June..

01/06/09
A quiet day really, monitoring price movements on Betfair all day. The gym is closed at the moment and not open until Thursday so my regular system has been put out for a couple of days, but hey, I’m not drinking even through boredom.

02/06/09
Another uneventful day really, I ordered a load of Thai ingredients that arrived this morning so I made a red curry paste and done a curry this evening, So much better than buying the crappy stuff you can get in a supermarket in jars, and I made enough to last and it keeps in the fridge.

I am getting so used to not drinking it’s becoming the norm really, I just don’t do it anymore, I don’t crave it, desire it, miss it or anything really, all those years of thinking I was doomed and was going to die an alcoholic, then along came baclofen and BAM, all over! Although I often wonder how much damage I did to my body through all those years of addiction to alcohol?

03/06/09
Many thanks for your advice anonymous Dr. I must mention my nausea has passed since I have stabilised on this dose and I feel much better and the somnolence is nowhere near as intense although still present. So to be honest I am a lot more confident and happier to stay on this dose as it has kept me totally abstinent.

I may discuss with my Dr. about taking more frequent doses as I can see the logic in this. I currently take 10 tablets three times a day. I can understand also about one of your patients feeling depressed! As I had the odd day feeling low but as you said all of a sudden your whole life changes and you need to adjust very quickly, a 16 year habit [as mine was] kicked in to check in 60 days is one thing people may have a problem dealing with.

04/06/09
I went to the gym today but the pool is still not open so I had a steam and a nice shower and hopefully it should all be back to normal by tomorrow. Also I weighed myself, I’ve lost half a stone and that’s not doing a diet and I haven’t been exercising so god only knows what’s going on with my metabolism? In fact I have eaten a load of rubbish including Kentucky’s, pot noodles, and lots of brown bread sandwiches.

No beer again obviously, but I felt a bit down in the dumps all day, occasionally I do feel like that, it just comes and goes. Normally if I felt moody a few beers sorted me out but I don’t have that vice any more so I need to find something else to lift my mood when I’m feeling blue! The question is what can I do?

This is going to sound ridiculous but it’s depressing knowing that I can’t have the jolly up when I’m feeling ****** off! But that is how it all starts isn’t it, depression and anxiety or you can’t sleep so you drink, start the vicious cycle and before you know it you’re an alcoholic.

I need some sort of excitement though! Something to get the old endorphins going and buzzing. Alcohol steals your identity but you don’t realise it until you have stopped! So when you abruptly stop drinking you have a void to fill, obviously don’t let that put you off, it’s the best thing that’s happened to me in years, but I am realising that I need to be doing something enjoyable in my void and I need to find something constructive to do now all the euphoria of not drinking has passed.

05/06/09
I still felt a bit low when I got up today, I had to go over and do some stuff at my old house and that never helps my mood. I did have a couple of bottles of beer this afternoon and I did actually feel a bit better, I wasn’t craving alcohol or anything like that, really just fancied a nice couple of cold beers.

I went swimming this evening and I do feel OK again this evening, as I said, the depression just comes and goes for no apparent reason but I did think that maybe I felt low because I hadn’t been going to the gym?

It’s strange now being in control of alcohol, I had a couple of beers this afternoon and that’s it, before I started taking baclofen there was no way I could do that, if I had beers at any time of day it meant a full blown session. Now I can have a beer like a normal drinker and to be honest I’m so pleased, it means I can go out and have a social life without worrying about a relapse. So that made me feel happier as I have been avoiding going out and that’s a bit stupid.

I may go out and not drink but if I had a couple and I enjoyed it is there any harm in doing so?

06/06/09
A strange day of enlightenment today, since I have been on the baclofen I realised I have been constantly trying to occupy myself! I am doing this system test using real money on making a tax free income, this includes sports bets and financial trading, the financial trading is using a dummy account [for fake money] the sports bets I am using real money, a small bank but I have noticed instead of having a day off and walking away when I’m in profit I tend to sit here all day when I don’t have to and shouldn’t really and I end up losing money!

This is because I don’t know what else to do with myself for the rest of the day. Now I know a lot of you may condemn what I’m doing but it is a test to see if I can make a tax free living a reality? I have got a few other things in the pipeline if all should fail but I am going through a huge transitional period in my life. I have given up drinking or at the very least being an alcoholic, I have started going to the gym again and exercising, my relationship has come to an end with my partner mainly due to the fact that I am sober and I can analyse things correctly, and I’m trying so hard at becoming financially secure again that it’s having the adverse effect and is making me lose money. I think it’s time to slow down and re-evaluate my situation; yes it’s excellent that baclofen has cured my addiction, but where do I go from here? I’m not sure right now but I’ll get there.

07/06/09
My partner came over this afternoon and we had a nice kiss and cuddle and it made us both feel a lot better, I think maybe that was why I was low as I hate us arguing and sulking. We went for a curry after and I had a couple of pints of cobra. We have also decided that we need a few days away so we are going to book a cruise I believe… Love is a funny thing.

I’ll be talking to my Dr. this week regarding my dosage and where I go from here with the baclofen. I have got used to this dosage of 300 mg now and it has kept me abstinent, I’ve had a couple of beers here and there and that’s it.

I forgot to mention I had a few San Miguel’s last night and a drop of wine and really enjoyed them; it is nice to know I can have a few beers without it becoming a problem and spiralling out of control. And I didn’t get any cravings today to drink, it just happened that we went out to eat and I had a couple of beers with my meal.

08/06/09
I had purchased a trading program today that helps you make money [apparently] on the exchanges like Betfair, so messing around with that most of the day. Went swimming in the evening, come back and played some poker. Spoke to my Dr. Today and I’m going to stay on 300 mg for another 4 to 6 weeks and then start to reduce it to around half. As usual no beers today, still felt moody first thing but that past throughout the day.

I went to the garage when I came out the gym and the guy at the counter said no alcohol? And I explained I rarely drink now and said it’s OK now and again, this guy then said he drinks a couple of nights a week but his big purple nose told a different story. Drinking affects so many people it’s unreal! And so many people have a problem with it but don’t admit it to themselves, I know because I was one of them and I was always trying to convince everyone else that I didn’t have a problem with alcohol! I genuinely feel sorry for alcoholics as I know how hard I struggled with alcoholism for so many years! I wonder if they’ll ever do an experiment and start adding baclofen to alcohol?

09/06/09
My partner and I booked our cruise today, so we go for a week in July. Quite a hectic day once we had booked, I had to film a video clip for YouTube, and then go and meet a Thai acquaintance of mine to discuss some business ventures.

I had a pint of bitter in the pub while exploring various options we had and once again nothing else after that 1 pint. And then back to the desk to practice using this trading program I bought yesterday, went swimming in the evening. Early night I think.

10/06/09
I woke up early today, checked my email and went to the post office. I then went swimming, practiced using this trading program [I’m no good at it at the moment though] and went swimming again in the evening.

I was going to have a beer this evening and watch the football highlights but I just didn’t fancy it. I ended up watching a film called “leaving Las Vegas” ironically it’s about an alcoholic that falls in love with a prostitute. It really did bring back some memories of the states I use to get in. And it still amazes me all those years struggling with alcohol addiction and a chance article that my partner noticed has changed my life for good it seems and forever I hope.

11/06/09
Very moody again today, from the minute I wake up I feel down in the dumps! I really can’t explain it but it’s just there! I’ve got a shit load to deal with at the moment but that’s never been a problem before! I’m a born fighter and I can normally shrug things off, but its not easy to do that feeling this depressed! fucking weird. I am so happy have come to the end of my alcoholism but now I’m faced with this! I hope it’s not forever? I don’t know what’s worse being drunk or being depressed???

12/06/09
I felt a bit better today, I had a couple of beers and a few glasses of wine last night, I can’t really say it done much for me but I did generally feel better this morning. My diet has been pretty crap lately so that maybe another cause of my moods? Also I’m definitely going to start spacing my dosage out as I’m taking 300 mg a day over a 16/18 hour period and I think flattened me also. I may take 60 mg five times a day and see how I go from there. I went to the gym in the evening although I didn’t really fancy it, I didn’t do too much though. Going to cook a nice curry for Sunday, a Vindaloo I think using my late nans recipe.

13/06/09
A bit better again today and I started to take 60 mg five times a day although as doing this blog entry I have only had 240 mg so far and I feel fine, so do I need to take the other 60 mg or do I leave it at 240 mgs? I had a couple of beers today one when I was in nandos having lunch and another when I come out the supermarket, nothing else though. It is such a relief to know I am not going to go into some sort of full scale relapse by having a beer.

The baclofen does keep everything regarding alcohol in check and my anxiety is much more stable, although I realise it can’t fix everything it i.e. the odd bout of the blues but it has done exactly what I wanted it to do and then some. Cooked the curry this evening in the slow cooker, and tested it as you do… it’s lovely.

14/06/09
A much better day today, my partner was working so I decided to do the same and practice using my trading application that I bought the other day. I am starting to get the hang of it so that made me happy, been scoffing curry alongside all day… Had a good session swimming in the gym and I think that taking 60 mg approximately 5 times a day has definitely helped as I do not feel low and lifeless, although yesterday I did not take the last 60 mg and I didn’t experience any alcohol cravings today and I had a lot more energy in general.

I don’t think baclofen is going to be a drug that suits everyone the same way ,in fact I’m sure of it. Everyone is obviously individual and therefore will react differently to the medication but even when I felt really low I didn’t doubt the positive effects that baclofen has given me. Maybe it was the baclofen that started making me feel low and lifeless? But maybe it wasn’t? Was it my diet? Was it a psychological reaction to the realisation that I no longer needed alcohol? Who knows? But I don’t that’s for sure! Now let’s see what I can put my energy into that can keep me occupied and Satisfied in what used to be my bingeing hours???

15/06/09
I stayed up late last night as there was a funny French film with subtitles on, surprisingly I had a craving also! I immediately took 3 more baclofen and it passed, but I was really surprised as it happened out of the blue. I felt really lethargic today and had a snooze in the afternoon, then I had to go up to a house I have rented out to move some stuff. Had a quick swim after came back and practiced my sports trading as I didn’t do any this afternoon. Quiet night tonight [as usual] no cravings.

16/06/09
Another day of practice regarding my sports trading, I did OK again. I went swimming in the early afternoon and then again in the evening. I have developed a really bad neck ache from all the breaststroke so I need to get that sorted as it is really giving me pain when I am at the desk.
Still spacing my dosage out and no beer again today or cravings although the somnolence has been present and ironically I couldn’t sleep last night. Apart from that no other side effects.

17/06/09
In the gym again today but I still haven’t lost any weight at all! I’m eating way less calories, I don’t drink anymore and that filled me with at least 1800 extra calories every day, and I exercise every day and I just cannot shift the excess! I can’t do any more than I’m really doing but I’m wondering whether a side effect of baclofen is weight gain and is it slowing down my metabolism? I am really trying hard to lose the weight but it’s just not happening. I don’t know what to do next or change in my diet or lifestyle that is going to make a difference? Another day of no beer and had no cravings.

18/06/09
I woke up a bit low again today, but I immediately had my mood food diet and I felt a lot better by the evening once I had come back from the gym. I was talking to my partner this evening and if I’m brutally honest there are quite a lot of side effects with baclofen. Although apart from the depression none of them are really that bad. I have had quite a few along my journey.

Sporadic Depression
Strange dreams
Somnolence
Occasional Headaches [higher dose]
Aching joints
Depleted libido [higher dose]
Breathlessness
Nausea [higher dose]
Numbness in arms
Weight gain.

But really once you get used to it it’s far from the end of the world and some of them are only evident at very high doses, so I imagine once I lower my dose again a lot of these will be rectified? But I am more than happy at the life changing gain baclofen has given me! I’m just pointing out some facts about baclofen, but remember stay with it and never give up even if some days you feel a bit rough, and you like me can be free from addiction to alcohol. Quitters never win and winners never quit. One of my favourite quotes and one I always try to use in my life in general.

19/06/09
I had a slight hint of being moody when I woke up this morning but I went to the gym and done some swimming and felt better. Good day sports trading today and increased my bank, swimming again in the evening. May do some trading on Saturday as my partner is working and Sunday we are going to a museum for the day. Absolutely no cravings and no beer, as it happens I cannot remember the last time I wanted to be drunk but it’s long long ago.

20/06/09
I actually finished early Saturday so we went to Bournemouth and got DVD out in the evening, had a couple of glasses of wine with my partner later.

21/06/09
As I have already said we went to the motor museum today, it’s OK considering we had complimentary tickets but there’s really not much there. Had a carvery after, no beer, and swimming in the evening. My partner said I didn’t even snore last night and that’s a huge bonus as during my alcoholism my snoring had become so ridiculous she had to sleep in the spare room. So it made a nice change.

I had not stayed there for around three months. As it happens the last time I stayed there was when I was recovering from a massive session on vodka that had put me in casualty as I had chest pains. How it’s all changed for me since! On that day that I went to the hospital we had to keep and in pulling over because I kept thinking I was going to have a panic attack, my poor partner! I had a beer in hand on my way there even though I was in immense pain I still had to have it there! My god! What a mess!

22/06/09
An uneventful day really, trading seemed difficult all day and only really made progress in the evening. I went swimming later on, my neck ache is giving me really bad headaches, I’m obviously not swimming properly and being in my chair all day only adds to the aggravation, so I need to sort my swimming stroke sharp as today I found it difficult to concentrate due to my neck aching.
Again no beer no cravings.

23/06/09
Had a quick swim in the morning and done some trading in the afternoon, then watched Wimbledon. I actually went in the gym this evening as my neck has been giving me pain so I went on the treadmill and done very fast paced walking.

I had really been putting it off as at one stage in my life I was super fit and done boxing, martial arts and running and to get on a treadmill and do walking was embarrassing to myself! I really want to do Muay Thai again but I am really conscious of being overweight so it puts me off.

That’s another thing you have to deal with when you give up alcohol! When you’re an alcoholic you give up caring and I didn’t give a shit really about how I looked in the final years of my alcoholism, as long as I had my alcohol I just didn’t care about anything else! But now I do care and I’m conscious of what people think, but there’s no way I’m going to drink to get over it and mask it. I’m just going to start looking after myself again like I used to do [I am trying]. I used to wear lovely clothes, all the top designer names. I still do buy designer clothes but they just don’t hang off me like they used to because of my weight. But I just thought it an idea to mention that you have to deal with yourself when you give up alcoholism for good.

24/06/09
A Crappy day today! I had some beers very late evening as I just couldn’t unwind, I must stress I had absolutely no craving at all! I had drunk as I think a normal drinker drinks? And to be honest I am pleased with my progress and I do not consider it a relapse at all, controlled drinking to me is OK but only thanks to baclofen, if I was not on baclofen and I had been abstinent I think you can safely say that it’s a relapse! If I thought it to be a problem I will just take emergency doses! Some people might agree, others that are seriously ill cannot afford to do that. There are some great comments going on from the anonymous Dr. and Jim so please don’t forget to read.

28/06/09
My sincere apologies for not doing the Posts, I’ve had a couple of days of real down in the dumps and drunk on all of them like an idiot. There were absolutely no cravings, I just drunk because I was feeling low and I thought it might help, but it didn’t and that’s not acceptable and I must learn to deal with things without the alcohol!

I really do hate the stuff! I stayed away at my partners as she always helps me when I feel depressed but I couldn’t update the blog from there because I was unable to remember the password or my frequent flyer number so once again my apologies.

I feel I have let everyone down and obviously myself but that’s what this blog is about, being honest and telling you how it is. I didn’t need to drink and I was stupid to do it but lesson learnt. I forgot also to take my last dose of baclofen one evening and I think that could have added to the semi relapse? So just remember even if you feel low on baclofen don’t even think about having a drink, it’s not going to make you feel any better and can cause a relapse.

Good luck to everyone out there considering using baclofen and thank you for reading. The posts shall resume as normal once again from today.

29/06/09
I had no alcohol yesterday although the depression was still looming and it seemed tempting but I didn’t. That brings me onto the anonymous doctor’s recent post June 2009 04;49, anyone considering using baclofen or is on baclofen is committed and obviously very committed to giving up the alcohol that in my case had been a 16 year curse. It’s not just Jim or the doctor’s anonymous patient that are committed, we all are surely? that in my opinion was a bit of a harsh comment to make!

I’m sorry anonymous Dr. but a lot of people may think that they are not committed and doomed to fail if they had had a craving that beat them or in my case depression amongst other things! But I have learnt from that and I will try to not use alcohol to treat my depression again. I myself do not consider failing an option but not everyone is me! So if you are using baclofen or considering using ignore that comment and it does not mean you are not committed, you’re all very brave as it’s no walk in the park in the beginning!

But I have found baclofen life changing and I am very committed as it has helped me so much and changed my views immensely in regard to my addiction to alcohol as I now know it’s beatable! So if you struggle with the side effects and alcohol in the beginning, it’s OK! There is a lot to learn about baclofen yet as it is very personal and different to every user; this is why I started this blog to share my experiences and to help others; and yes I have read Dr. Ameisen book and I reread different chapters for reference regularly; in fact I made a reference to it in some of the very first updates in April. You have a enormous amount to offer this blog anonymous Dr. but I feel all users and people trying to get prescriptions or considering using are committed to the cause.

30/06/09
I actually got some sleep last night, not a lot but better than nothing. I slept really bad during the binge and slept worse after! No beer and no cravings! I have noticed that drinking on baclofen gives me a very very groggy feeling from my neck into my head, and it lasts even when you have stopped drinking. It’s like a tension that starts from my shoulder blades into my neck and then into my head and you know it’s there! and whenever I take a dose it seems to make me just incredibly lethargic and foggy! And having only happened since the binge.

In fact when you drink on baclofen you by no way get the same effect as you used to, there is no happy euphoria feeling, it’s just a complete sedation of all senses and feelings and to be honest it’s quite unpleasant.

But I seem to be in a constant daze and its worse when I take the next dose! I have never had that before. I spoke to my Dr. Today and I’m going to start bringing the dose down and to be honest I am really happy. The side effects at a higher dose have been too much for me, he has recommended reduce the dose 30 milligrams every couple of days until I am on 150 mgs so let’s see how it goes?

For me personally, depression, the flatness, loss of sex drive and my personality have been the real issues. A higher dose stopped working as good as it did on a lower dose, so I’m reducing it and going to use around 50 mg if I get the craving and basically go from there?

Reading my back posts I did drink at some of these doses but that was really to see when the baclofen was really going to work, I know it does work but you need to put some additional effort in on the lower doses, but I’m happy to do that rather than feel like this.

68 replies
  1. anonymous Dr.
    anonymous Dr. says:

    Hi Chris,
    Olivier has just told me about your blog, so I had a look and skimmed through some of your last entries. Well done on staying abstinent for so long. I have a some patients on 300 mg as well (and a couple had higher doses on occasions). I don’t want to interfere with your Dr. (GP?) He is doing a very good job and is very brave as is everybody else who uses the drug “out of license” and at these high doses (3 times the nationally recommended doses). I do believe it is the right thing to do in people like you. I was wondering how frequent you take the medication? Baclofen acts very quickly (my patients tell me usually within 15 min – 30 min) but the action doesn’t last for very long. Therefore in my experience in many patients frequent dosing of lower doses is the trick to avoid side effects. I have for example a patient who is taking it every 2 hours (30 mg) – except for when she is sleeping obviously. I see that you plan to go down to 150 mg pretty soon. I would have thought that unless there are side effects that make you decrease it quickly, I would be very very (!!) careful. There are several reasons:
    1) What you describe (in medical terms “flattened affect”) which is as you say is part of the relaxedness with the baclofen disappears in my experience after some time on a stable dose. (By the way, one of my patients was actually found to be depressed and improved with antidepressants – There must be an awful lot going on in somebody whos life has just totally changed or is about to change – All this needs a lot of working through).
    2) As you are probably very aware, craving for alcohol depends a lot on availability and temptation… In my experience, for many patients it is good to have some baclofen on board. It just takes the power out of the willpower needed (i.e. you only need the will to not drink but don’t have to fight with yourself when tempted). Therefore, for the time being, it is probably better to be on a rather higher dose than really necessary in your daily life (another patient of mine recently had a lapse after being abstinent for 1 year – she didn’t enjoy the consequences (she does have some damage to her body from drinking for over 30 years). I have actually upped her dose slightly (from 20 mg to 25 mg 4 times per day).
    3) Although baclofen does not make you dependent on it (there are several good studies on that), when you stop it all in a sudden (and therefore I think that when you decrease the dose too quickly) you can get some severe symptoms which are a bit like going through cold turkey.
    4) Baclofen is cheap (much cheaper than what you would have paid on alcohol) and it is in the blood only for a few hours – therefore I am convinced that there are no long term problems with taking it.

    On a slightly different point, I noticed that you had some symptoms when your bed broke. This sounds very much like you have acid reflux coming from your stomach into your gullet. I suppose if you don’t want to sleep on a slopey bed your GP can give you some lifestyle advice (control your weight, avoid cigarettes, alcohol, too much coffee and tea (caffeine)) or prescribe you a drug to block the acid (PPI).

    Hope this was of help, I’ll follow your posts a bit to see how you are getting on…
    M

    Reply
  2. Jim
    Jim says:

    Went to 130mg today, and somnolence kicked in. Don't mind though because (1) it means I'm being treated, and (2) I'm geting sleep that I've been missing for years. The sleep is deeply appreciated. I slept 4 hours from 12 to 4AM, then 3 more from 7 to 10AM, then 3 more again from 6 to 9 PM. That's a lot of sleep. I had absolutely no cravings today, nor did I have any desire to use drink to alleviate boredom. I'm going to have to stay at 130 mg until my next batch arrives (a week from now) because I can't risk abrupt cessation. BTW, I have experienced no respiratory depression at all, yet. (The previous post was very helpful to read.)

    Reply
  3. anonymous Dr.
    anonymous Dr. says:

    A comment to Jims post (not sure whether it is allowed in this blog):
    It is probably a good idea to have enough baclofen around to make sure not to get any cravings. This is since in many people going back to drinking can be fatal. A good GP who gives repeat prescriptions without too much difficulties is a good idea (and many GPs can be convinced to do that now because they realize that it helps their patients). With regards to respiratory depression, in my experience patients don't really get it more than with alcohol (this is actually true for all the side effects I have seen except for a rash which is a sign of an allergy and allergy is an absolute contraindication to taking the baclofen unfortunately). As a rule of thumb: People who still have problems sleeping tolerate a higher dose. You only get respiratory depression if you increase baclofen too fast. More important than the total daily dose is probably the strength of a single dose. If one of my patients were on 130 mg they would for example be on 25 mg (2 1/2 tablets) 4 times during the day and a higher dose of 30 mg (3 tablets) at night. Then I would maybe increase the evening dose by 5 mg, ask them to take an extra dose (30 mg) if / when they wake up during the night or take an extra smaller dose (10 mg or 15 mg) during the day if they get cravings. I would then discuss the progress with them after a few days (usually a week or so because I am so busy) to see how the dose needs to be adjusted. Hope that helps… M

    Reply
  4. Jim
    Jim says:

    This is my second day at 130 mg/day. I'm not going to say that this is my maximum dosage because I can't see into the future, but my desire to drink, either out of craving or boredom, is no where to be found. I don't know where it went, but I don't think it's in me anymore. I mean, if I have to go to a higher dosage, I have absolutely no problem with that, and I am prepared. I will do that. But I have a sense I may have maxed out, though it is just a sense, not science.

    Somnolence endures. But I am enjoying the sleep. One of the worst effects of alcoholism on me was a total lack of deep sleep. During the day, if I stared into space for just a few seconds, I would begin to experience what I describe as waking sleep. That has begun to subside, thank God.

    Another benefit that baclofen has provided me is limber limbs. I am 57, and my legs were becoming stiff. I had to walk down a staircase slowly because my legs were so stiff. I literally fly down the stairs now. I mean, it's remarkable. I was beginning to walk like an old man. That's gone.

    Well, it will be interesting to see what happens during the next week. Though I have absolutely no fear that I might drink, I will definitely carry an emergency dosage of 40 mg, in case I need it. Best to you, Chris.

    If the anonymous doctor could elaborate on the dangers of a resumption of drinking while under treatment, that would be appreciated. As you know, Chris was drinking at 250 mg. Or did you mean a resumption of drinking following a prolonged abstinence?

    Reply
  5. anonymous Dr.
    anonymous Dr. says:

    Sorry, if I have confused you. I suppose you mean the phrase: "This is since in many people going back to drinking can be fatal." What I mean is that in patients who have caused much damage to their bodies over years (e.g. scarring of the liver) going back to drinking after a long time of abstinence is a bit like pouring petrol on a smouldering: you immediately get a bad fire (liver inflammation in this case). In her case this was at a time when the liver still tried to regenerate to make good the damage caused over years. I have only spoken to her over the phone, but it has probably set her back a few months…
    Hope that helps.
    M

    Reply
  6. Jim
    Jim says:

    I have stopped drinking. My alcoholism is cured, provided I take Baclofen. I guess I'll be taking this medication the same way a diabetic has to take insulin, which is no problem.

    I even tried to test myself by summoning the desire to drink. I couldn't. It's been completely extinguished.

    I'm surprised it took only 130 mg. And I'm surprised it all happened in just two weeks. I guess I was lucky.

    Two things to report: (1) I did experience respiratory depression, and (2) I experienced low blood pressure.

    I have chronic bronchitis from smoking, which is being treated with Combivent. When I lay down to sleep, I experience a sudden gasping for air. I have to take two quick, deep breaths, and then I'm okay. I had this before, but it became much more pronounced after taking Baclofen. I suspect this will subside. Also, I have hypertension, which is being treated with 50 mg of Atenolol and 25 mg of Hydrochlorothiazide. I knew, from doing my research, that Baclofen would lower my blood pressure. I just didn't know when it would happen. Well, it happened last night. I took my blood pressure yesterday afternoon, and it was 120/80. It's usually between 130/90 and 165/200, even with the BP medication. Then I went home and took my BP meds, and, 3 hours later, my blood pressure fell precipitously. I am going to stop taking the BP meds. I see my doctor on Tuesday, and I will monitor my BP several times a day in the meanwhile. But I can't take the BP meds anymore. The experience yesterday was scary.

    To the skeptics and critics, I would like to say that this treatment was effortless. I took a pill, and my 30-year bout with alcoholism was cured in two weeks. Yes, it really is that simple. Or it was for me.

    To Dr. Ameisen, I thank you from the bottom of my heart. You are, in the truest sense of the word, a physician, a healer. Countless lives and countless souls will be saved as a result of your healing.

    I will continue to post.

    "Free at last, free at last; thank God Almighty, [I'm] free at last." – Martin Luther King

    Reply
  7. Jim
    Jim says:

    Quote: "It's usually between 130/90 and 165/200." I meant to say "between 130/90 and 165/100." Also, when I said, upon reclining, I had to take two quick, deep breaths, I did not mean two Combivent puffs. I mean just two deep breaths of air. I actually use the Combivent rarely. I am going to start taking an antacid today, following the anonymous doctor's advice. I'll let you know if it helps.

    Reply
  8. Jim
    Jim says:

    As before, my desire to drink has been completely vanquished. It is no longer something with which I struggle.

    The most important goal for me right now is trying to restore a traditional sleep pattern, which was destroyed by my excessive drinking. Night before last, I slept only two hours, then numerous naps all day long, which, of course, is no way to live. (9 mg. of melatonin that night did not help.) My plan is to begin altering my extremely sedentary lifestyle. I've begun taking 1-mile walks, once a day. I could easily get them up to twice a day. Last night, I slept a solid 5 hours. What a relief. Now I don't have to sleep all day long. This is my most important goal right now.

    The gasping for air has been partly relieved by taking a daily antacid. The antacid takes a full 4 days to totally kick in, so I'll report more on that later. A big thanks to the anonymous doctor for that tip, as I would never have guessed that was the problem, instead of respiratory depression, because I felt no heartburn whatsoever.

    Constipation has become a problem, so I'm also taking a laxative, twice daily, per instruction.

    I continue to deal with lethargy and a feeling of being "spaced out" and some wobbliness. I'm confident all of this will subside.

    Lastly, I forgot to mention that I saw a liver specialist in April. He ordered extensive blood tests and a sonogram, all of which showed normal results. So I had no liver damage. However, I do have peripheral neuropathy, which I suspect is permanent. I feel it in my lips, my fingers, and my toes, most prominently in my toes.

    I have half of my original 3000 mg shipment remaining, and I am expecting my next shipment of 6000 mg on Thursday. So I planned well, which was extremely important.

    I do have an experiment in the works, which I have not yet decided to carry out. When I decide to go through with it, then I will tell you about it.

    I remain at 130 mg, but I have stretched out my dosage times from every 5 hours to every six hours.

    Reply
  9. Jim
    Jim says:

    Great news! I walked 1 1/2 miles yesterday and slept a full 5 hours last night, which is acceptable. So walking is the trick. Also, the "spaced out" feeling and the wobbliness are gone. I'm back to normal and still at 130 mg.

    Now the experiment: it's really not an experiment. At the beginning of my posts, I told Chris that I predicted baclofen would cure my chain smoking as well. I remain convinced of this. But I'm going to have to increase my dosage. And that is what I'm going to do. I'll go to 270 mg, maybe 300, but no more. And I'm going to do it much more slowly than the previous titration. But I'm going to do it. If I can stop smoking, the rewards would be even greater than the rewards I've achieved through alcohol abstinence – because my lungs are shot.

    One last thing: I don't know if anyone is following my posts, but, if there are any doctors out there, please tell me what blood tests I should ask my doctor to order when I see her tomorrow. Obviously, I will ask her to test my kidney and liver functions because I know that baclofen is partially metabolized by the liver and excreted by the kidneys. But, if there are any other tests, I'd like to get those done as well. Any suggestions?

    Reply
  10. Jim
    Jim says:

    Got 6 full hours of sleep last night. Walked 3 miles. Gasping for air has been completely resolved by the antacid. Blood pressure yesterday was 145/95, too high. I see my doctor today.

    Reply
  11. anonymous Dr.
    anonymous Dr. says:

    Hi Jim,
    I thought I'd write some comments on your recent blogs (I was away a couple of days). Glad to hear that your reflux type symptoms are better (it is always risky to make a diagnosis with only limited information).
    With regards to your blood tests you could get checked with regards to the baclofen (I am aware that it is too late for you, but might help in the future / others): One of the nice things about baclofen is that it has a very short half life (on average about 3 to 5 hours). This means that it can be dosed as required (pill in the pocket) without a risk of accumulating in the system. It seems to be very safe even in severe liver disease (I have several patients on it with impaired liver function). I don't think that it can make liver inflammation worse. To check for kidney problems is justified before starting baclofen (although kidney disease as such is not very common in the general population or patients with an alcohol problem). In that case the baclofen would need to be dosed very (!!) carefully (I wouldn't regard decreased kidney function or even dialysis as an absolute contraindication for baclofen, but probably many GPs would find it quite risky to start somebody like this on baclofen).
    I am not aware of any problems that baclofen would cause that could be picked up by blood tests. I personally therefore check the kidney function (urea & creatinine) and the liver tests (for liver inflammation AST & ALT and for liver function albumin, clotting and bilirubin) before start of baclofen, but don't do any repeat tests during treatment (unless there are other reasons).
    With regards to the smoking, interestingly, the patients with whom I have discussed this also seem to need a higher dose to block craving for cigarettes. I would be interested in hearing what sort of doses you need…
    One note of caution: I read that you have neuropathy, probably due to the alcohol. When that is the case then I have seen patients develop incontinence of urine when baclofen doses were increased very rapidly (I felt that rapid increase was necessary in some of my patients since some of my alcoholics were keen to stop but maybe not as keen as you to try something that might take weeks to make a noticeable difference). As a rule of thumb I would try to not increase the dose by more than 10 mg / day. With regards to you feeling "spaced out" I am surprised that you increased the intervals. In my experience patients feel less spaced out if they take smaller doses more often during the day (an obvious thing is to half the interval (e.g. from 6 hourly to 3 hourly) and to half the dose (e.g. from 40 mg to 20 mg). This means that they get less fluctuations in the baclofen blood levels which seems to be better to tolerate (less sleepiness during the day, no / less craving before the next dose and less respiratory depression). I would also expect less fluctuations in blood pressure during the day. An interesting experiment would be to take baclofen and measure your blood pressure before you take it and then every 15 minutes or so. I would expect to see a drop in blood pressure after some time which then goes back to roughly the original level a bit later… (I would be interesting in your readings, maybe you have discovered a way to predict at what intervals the baclofen should be given). I feel that such a dosing might help you to be more awake during the day and get a better sleep pattern. In the evenings, obviously, you could take higher doses or take two doses closer to each other (+ some baclofen if you wake up during the night). This is because you probably need higher doses to keep some of the baclofen in your system. It seems like the mechanism to get rid of baclofen (mainly via the kidneys) gets saturated and higher doses stay longer in the system (for example for 6 or 8 hours rather than the 4 hours). Obviously, with your breathing problems you need to be careful not to increase doses in the evenings too quickly.

    I hope the information helps.
    M

    Reply
  12. anonymous Dr.
    anonymous Dr. says:

    A quick comment to Chris,
    Congratulations to your hard work. You mention something I was wondering about for a long time. What do people do when they don't have alcohol in their life anymore. I have several patients who have been drinking for over 4 decades and I suppose that it might be too late to start a new life. Therefore, if people don't have anything else to live for, the effect of baclofen might be limited and putting it into tap water or the beer directly might not be very effective in this. Any hints I could hand on to my patients would be appreciated (a cruise is probably a good idea if you can afford it, but I suppose it is all about lifestyle changes in the long term…).
    M

    Reply
  13. Jim
    Jim says:

    Dear Doctor, thank you very much for your comments. They are invaluable to me. RE dosage intervals – I am about to implement smaller doses at more frequent intervals. I'll definitely let you know how that works out. I saw my doc. She says the lower blood pressure (it was 136/86 at her office, with no BP meds) is probably due to my abstinence, not the baclofen, though I thought I read that baclofen does indeed lower BP. She asked me to resume taking atenolol but not HZT, which I have done. When she asked me who was prescribing baclofen for me and I told her no one, that I had to use my own means to obtain it, she was literally speechless, to which I said, "I really wanted to stop drinking." She said she was very proud of me.

    As for kidney and liver tests and any existing disease, to those others who may be reading this, I was thoroughly tested for both immediately prior to my self-administering this regimen, and I knew I had no disease; I knew my kidney and liver functions were normal. I would have found this self-treatment very risky otherwise.

    As for my smoking, I am desperate. I am experiencing bronchial spasms (and the resultant, developing wheeze) nearly constantly the past several days. I have nicotine inhalers, and I will try them tomorrow morning. I must stop smoking immediately. My nicotine addiction is far worse than my alcohol addiction was. But I am convinced that the baclofen will kill the nicotine cravings just as it stopped the alcohol cravings. Baclofen is my savior; I know this. So, I feel my course of action is set in stone. I must increase my dosage. I'm just waiting for my next shipment to arrive, which should be anytime beginning tomorrow. I will definitely follow your guidelines, for which I am grateful.

    My sleep pattern has become very good. I continue to walk 1 1/2 to 3 miles every day, and I am sleeping 5 to 6 hours, which is normal at my age.

    Reply
  14. Jim
    Jim says:

    Interestingly, I experienced my first craving today. It wasn't really a threat, but it was definitely stronger than before. I felt it getting a grip, which scared me. And it was my old witching hour, the exact time of the day when I previously experienced uncontrollable cravings. I was two hours away from my next dose, and I immediately went and took it straightaway. Then, BAM! Gone! Carrying an emergency dose of 40 mg AT ALL TIMES is now mandatory. And I know I'll only have to wait an hour or less before it kicks in. I can do that. My drinking days are definitely over, and I DON'T MISS IT ONE MINUTE. Actually, that's incorrect. I did miss it, twice, over the last few days. I was remembering how much fun I had when I drank. At the time, it was not a threatening craving, just a fond remembering. I used alcohol like a drug. I remember that soothing, mellow oh-so-sweet assuaging of my soul, deeply. That was why I drank. Unfortunately, the drink produced cravings, and that's why it became a problem.

    Anyway, to finish up, as for new things to do, this has become a matter of serious attention. Fortunately, I am a writer with a brilliant career ahead of me. I don't want to reveal too much because I wish to preserve my anonymity, but let's just say I have cracked a code which many others before me attempted and failed to do. I don't want to sound immodest, but the world awaits me. I know this. I have, hopefully, at least another 20 years left, maybe more, which I intend to use right down to the last moment. I have already resumed my writing, which stopped five years ago, when my drinking became intense. The depressive effects of my drinking are noticeably abating each day, partly because I don't have to spend the first 6 to 8 hours of EVERY SINGLE day dealing with a hangover. I now arise to write and write and write, and I am so grateful to have my life back. My eyes well up when I think about the opportunity I have been given here. So, as for finding things to do, each day, I adopt a new goal, another task, and I begin working on it. My days are becoming filled with very meaningful work. I am experiencing some difficulty with concentration, but I believe that, with hard work, I will prevail over that too.

    As always, I hope my posts will help others, and I hope you continue to post as well, Doctor. Best to you, Chris, my buddy.

    Reply
  15. anonymous Dr.
    anonymous Dr. says:

    Hi Jim,

    I think there are probably many reasons for baclofen to lower high blood pressure (I don't really think it would lower it to lower than normal except in an overdose). The main one is probably because it makes people relaxed and helps with anxiety.
    Re your first craving: This is very normal at about your stage (I think you are on the drug for about 2 weeks or so). As I said, craving depends very much on the situation and temptation and this is why I think in the beginning (maybe first 2 months or so) the dose has to be rather higher to account for this. In some patients the craving can become overwhelming or they don't have any baclofen available and go back to square 1 which in your case dosen't seem to be an option. However, I think that you have just proven to yourself that the medication works. Some people say that every alcoholic manages to stay abstinent for a few weeks or so, but it is these descriptions by patients that make me believe in baclofen. I think you are doing the right thing by taking some baclofen with you. The other thing to do is probably take the extra dose at your difficult time (whitch hour) on a daily basis, you wanted to increase the dose anyway.
    Now re: smoking. I think you are right in that you can come off it with baclofen. From the limited information I have on you I can imagine that the following could work (I don't have terribly much experience with baclofen and smoking but would be interested in hearing how it goes): Try and increase every single dose you take during the day by half a tablet (they should be easy to break and you can even quarter them with a knife if needed). If you get any side effects with that depending on the severity go back to the previous dose or just stay on the dose until your body got used to it (eg. tiredness…). Some of my patients did the same for alcohol and increased the single doses by half a tablet or so every 2 to 3 days which seems to be safe. If there are particular times when you crave for cigarettes, you might need to increase the dose at those times (and obviously try to cut down the smoking as much as possible while you do this).

    In general, it would probably be good to get your GP on board. She seems to see that baclofen helps you and might be prepared to prescribe it now? If she needs more information or support, I am sure this can be provided (e.g. via Olivier). I think the more GPs are prepared to prescribe baclofen the better.

    By the way, the post I read about the symptoms helped by antacids were in response to Chris (30/4/09) when he got better as his bed broke (but maybe I got mixed up). I am wondering how he is getting on. I have just seen that he posted he is on a dose of 100 mg 3 times / day (8 hourly?). This is certainly a very high single dose and I have never prescribed such a high single dose. I would have thought that he too would probably feel better on a lower dose more frequently. Depending on peak time of craving something like 50 mg every 4 hours, but maybe less during the day and more in the evening. I can imagine that the drinking Chris describes is at the times when the action weans off before his next dose. I am not sure whether medically complete abstinence is desirable for him, but taking more frequent doses might be a way of achieving this.

    Hope this helps,

    M

    Reply
  16. Jim
    Jim says:

    Thanks, doctor. RE increased dosage regimen, will do. I was going to do smaller dosages at more frequent intervals beginning today, but decided to do it instead when I begin increasing dosages for tobacco. Your comments are very helpful. RE my doctor writing my prescription, that's a firm NO GO. ("We physicians have laws to abide." And frankly, I don't care. I know how to obtain my medication. Plus, I spent a lot of time trying to find a physician to help me. Most of them lacked the courage to take a risk. I found one who wanted $2000 (which I would have paid if I could), and I found an excellent psychiatrist who did actually consider it, but, in the end, was also too scared. I'm planning to go back to him once I have more results to show (e.g., tobacco cessation). My plan is to obtain through my own means the baclofen I need to quit alcohol and tobacco, and then seek a maintenance prescription of 50 or so mg per day from a physician. I am confident my plan will succeed.

    Have a great day, everyone!

    Reply
  17. baclofenremedy
    baclofenremedy says:

    Yes I am fine Dr. M, apart from feeling depressed for no apparent reason, I still take Seroxat as I initially took that for the anxiety and panic but I believe it also increases serotonin, but why do I feel depressed? Also I never suffered from acid reflex as I take lozec. I have noticed something else, when I used to be drifting off to sleep during my alcoholism I always jumped and flinched before I fell asleep and that seems to have stopped.

    Reply
  18. anonymous Dr.
    anonymous Dr. says:

    Jim,
    I have seen that before in patients. I'm affraid, I don't have a quick fix. The antidepressant did work with my patient(s). There is mainly one I can remember and she also had flattened affect to begin with. This is difficult because on one hand one could think that maybe it is a side effect of the baclofen, but on the other hand one could think that increasing the baclofen dose could make you sleepy and less bothered. I do believe that taking smaller regular doses of baclofen might help. In my experience if you have something that changes how your brain experiences things you get into trouble & can get depressed. This is probably true for fluctuating female hormones (PMS) but also for other drugs (e.g. interferon). The main thing is probably, don't give up. It will get better and there are people thinking of you…
    M

    Reply
  19. anonymous Dr.
    anonymous Dr. says:

    Chris,

    yes, Jim was right, the post was meant for you. I am glad you are better now. I was thinking of you (also about one of my baclofen patients who was just admitted to ICU – I have some very very sick patients who have caused a lot of damage to their bodies with the alcohol). Well done for going out and doing something and enjoy your curry.
    M

    Reply
  20. Jim
    Jim says:

    Chris, RE the last 60 mg dosage – I'm sure you already know this, so let me just remind you. If you lower your dosage too quickly, you can instigate withdrawal symptoms, which can be severe. I'm sure the doctor would confirm this, right?

    Reply
  21. Jim
    Jim says:

    Okay, I have news. My second shipment arrived, right on time. My source turns out to be very reliable, which is good.

    I'm going for 300 mg. I've been at 170 for two days now, and tomorrow I go to 190. I added a dose at bedtime, so I'm taking the additional 20 mg then. Tomorrow, I'll take 40 mg at bedtime, so all my other doses will be the same amount that they've been the last week or so. I'll add 20 mg every 3 days, and I'll stop at 300 mg. I'm also going to change the intervals at which I take my pills to every 3 hours, instead of every 6 hours. So, tomorrow, instead of taking 40 mg at 6AM, I'll take 30 mg every 3 hours (that's 6, 9, 12, 3, 6 and lastly at 9 PM.) We'll see what difference that makes.

    I noticed the extra 20 mg on the second day, very pronounced. I actually welcome the “spaciness” and wobbliness because it means I'm being treated. That's how I look at it. Of course, I look forward to when I can titrate down after 6 weeks at 300 mg. then I can look forward to a monthly savings of $1000. Yes, that’s what I used to spend on booze and cigarettes.

    Most notably, I'm dealing with missing "my friend." This has become a daily occurrence now. I do view it as a threat. I've had 8 beers in my fridge since the day I stopped drinking, and I do find myself wanting one, just one (really), more and more. BUT I WON'T DO IT! I don't want to drink anymore, at all. I know that I can have just one, and I LOVE the taste of a cold beer, actually just the first few sips. But I'm not going there.

    The way I see it, what's required here is a final farewell and a determined severance. It's over. Goodbye.

    I pray that this next round will extinguish my craving for tobacco – because the tobacco is doing far more damage than the alcohol did.

    And lastly, here's one for the doctor. I'd appreciate your comments, as always. When I stare into space for just a moment, my eyes cross. I thought this was due to sleep deprivation, but I'm not sure it's improving with the deep sleep I am now getting. I'm concerned that it's permanent damage. I sure as hell hope not. By the way, the reason I'm taking a dose at bedtime is because, as I said, my main goal is to establish a regular sleep pattern and it seems plausible that a lull in my medication would cause a sleep disturbance. So that possibility should be eliminated. We'll see what effect it has.

    Reply
  22. anonymous Dr.
    anonymous Dr. says:

    Jim,
    You are right that you can get symptoms if you reduce the dose very suddenly. Also, when you reduce the dose you can get the experiences you have where you notice some cravings even if they are very weak (thinking of your bottles in the fridge / remembering the smell / taste of the first sips…). Therefore, a "pill in the pocket" is a good thing. Obviously, you don't want these to become too strong because then you may be back to square 1. As a rule of thumb, people who still have these thoughts or who don't have a normal sleep pattern still need higher / different dosing. Thinking aloud, it depends a bit on the times when people get the cravings, but say, a patient of mine on a similar daily dose as you (180 mg) would probably take something like:

    6 am: 40 mg straight on getting up (blood levels on getting up must be virtually 0 – blocks any cravings in the bud)

    9 am: 20 mg (is busy doing other things, so not much risk of thoughts of alcohol) except for Saturdays when he goes to the shops and takes 40 mg because of the temptation looking at the shelves full of alcohol – he had similar thoughts like you with your fridge

    noon: 20 mg (again usually a very busy time for him, doesn't need much)

    3 pm: 20 mg (same)

    4:30 pm: 15 mg (is on his way home from work and wants to make sure that when he gets home the first thing that comes to his mind isn't his fridge (that's when he used to start drinking).

    6 pm: 35 mg wants to wind down and relax and found that the extra 5 mg (1/2/ tablet) suits him most days, but sometimes tops up with an extra half tablet some time later.

    9 pm: 40 mg to get more relaxed

    11 pm: 20 mg that's the time he wants to go to bed & sleep…

    3 am: he sometimes wakes up at that time and then takes an extra 20 to 30 mg (if he wakes up with dreams of alcohol or drinking he takes a higher dose).

    Reply
  23. anonymous Dr.
    anonymous Dr. says:

    What I wanted to demonstrate with this is that for this chap 1 baclofen tablet is about equivalent to a couple of drinks. He didn't drink 1/4 whisky every 3 hours, but he drank the equivalent over the day. Also, he didn't drink the same every day of the week. So, why should he take the same amount of baclofen every day on the dot? The way baclofen works is that it attaches to some receptor in the brain to which alcohol would otherwise attach to and in that sense (and only in that one) replaces alcohol. So, if you know you pass your favorite pub on a monday at 4 pm take an extra dose at 3:30. If you know that on your wifes birthday you are going out for a big meal and everybody is going to dring, you got to take an extra dose beforehand (and of course take a pill in the pocket – I can't emphasize that enough).

    Now, with regards to your eye symptoms. These suggest to me:
    1) unless you have them when you are very sleepy with the baclofen I would have thought that you have some beginning nerve damage due to the alcohol. This is since in my experience these things only happen in people with underlying nerve damage. I believe the baclofen only unmasks the damage rather than causes damage. This is like a squint that can appear in people who are sleep deprived and just haven't got the energy to keep them streight.
    2) In all my patients who had these the neurological side effects (double vision, incontinence) they disappeared after some time. Some patients tolerated them very well "I'd rather wet myself than have this craving again…". They disapear after around half a week to a week on the same dose. In a couple of patients I decreased the dose for the symptoms to improve and a week later or so increased the dose again (but slower) because the craving wasn't controlled with the lower dose. In people who were very keen to deal with the cravings we have slowly increased the dose despite this type of symptoms. But then one has to be very careful, especially when out and about (this can be done easier in patients in hospital). Of course, driving, operating heavy machinery is a no no then (but I suppose you wouldn't do that after a handful of drinks either).
    Did you manage to cut down your smoking with the higher doses? My guess is that to optimize the effect on the alcohol thoughts/urge/cravings you need some more pills per day / 24 hours and probably more for the cigarettes.
    I was interested to hear about your savings of $1000. I suppose you live in the US? Is that net saving (costs for baclofen deducted)?
    All the best,
    M

    Reply
  24. Jim
    Jim says:

    Hi, doctor. I'm in the US. RE savings: I drank a pint of whiskey every night. That's 14 bucks X 30 days, or $420. I've spent about $300 on my Baclofen so far (a one month plus supply). I smoke premium cigarettes, American Spirit (natural, no chemicals, slow burning). I smoke 2 packs a day, which is the equivalent of 3 packs of a regular-burning cigarette. They cost $8 X 2 (packs) X 30 (days). My booze budget covers my Baclofen budget at this point. If I quit smoking, that would be pure savings, about $480. Obviously though, the real savings is my health and the freedom I gain by eliminating these two addictions.

    As for the cross-eyed syndrome, before I began taking Baclofen, I was able to quit drinking for four days at a time. Once, on Chantix, I quit for 9 days. (Chantix caused me severe vertigo, the worst I've ever had, really frightening.) I noticed the crossing of the eyes abated significantly during those times. I was convinced it was a sleep deprivation effect. At its worse, my eyes would cross broadly. Actually, today, just now, if I stare into space, they are crossing much less. So, maybe I'm going to be okay. I use this test as a measure of my recovery. The other test I use is the severity of my Restless Leg Syndrome. The liver specialist who I saw asked me if I had RLS, so he knew about some correlation between alcoholism and RLS. My RLS is GONE, pretty much. Previously, when I went to bed (always inebriated), I would shake my leg vigorously. And people told me I did it in my sleep, too. ("You're like a dog when you sleep.") While alcohol soothed me, afterward, when my drinking was done, it induced a deeply rooted pain, and shaking my leg relieved that pain.

    I remember an incident 30 years ago, with my girlfriend, after a night of drinking Jack Daniels. We were lying in bed. I had this incredible pain in my legs, like in the bones, real deep. I bent my legs at the knee and asked her to push as hard as she could against my shins, and that relieved the pain. So I have always been aware of this alcohol-induced pain in my legs. During the last four years, when I began drinking every single night (my drinking had been only occasional, but excessive, before then), I had a sense that I wasn't getting REM sleep and that it was because of this alcohol-induced pain. And that was the reason my eyes would cross. It's actually better today. I hope it goes away.

    On a side note, I know a lot of people are reading these posts. I wish they'd chime in with their thoughts and questions. It's okay to post anonymously. I'm posting anonymously. The idea here is to generate some controversy about Baclofen, with the hope of getting physicians to start using Baclofen to treat alcoholics. Alcoholism is an evil, atrocious, destructive disorder. I find it mind-boggling that there is now a cure, which is not being implemented world-wide. I don't think it's a good idea for people to treat themselves, so we really need to get the physicians on board. When I went looking for a physician to help me, I couldn't find one. But I did find one who was inclined, but still hesitant. Those are the physicians I wish to persuade, the ones who are sitting on the fence. People will be helped, saved; whole lives will be reclaimed. Chris and I have proven that. Nothing bad, only extreme good, has come from our taking Baclofen. This is becoming a crusade for me. I feel no shame in having been an alcoholic, nor do most professionals treat me with shame. On the contrary, they seem to have some respect for me for having admitted my predicament to them. And I feel a glowing pride in having cured myself. I want the whole world to know about Baclofen. I want to end alcoholism. If you are a moral person, this is a moral imperative. Please chime in. At the very least, if you have questions, go ahead and ask them. Just one thing, please be helpful, as are we, not hurtful.

    Although this isn't my blog, I don't think Chris would object to my trying to make his blog more popular, while helping people at the same time.

    Reply
  25. Jim
    Jim says:

    I'm on Day 2 at 170 mg. Lethargy, somnolence, unsteadiness, and fogginess have all set in, again. But that's not a problem because, as I've said, it's Baclofen working its magic. However, something interesting did happen.

    Chris and Dr. Ameisen have both written about being incredibly relaxed under the effects of Baclofen. I never expereinced that at 130 mg. Now I have. It's a wonderful feeling.

    The other experience I've had is the lifting of the oppressively depressing effect of alcohol. It's difficut to describe. I notice it in the morning when I emerge for a walk at dawn, instead of crawling out from under a rock in the late afternoon with the bleakness of a hangover looming right behind me. And I noticed it this morning in the shower. It's less of a struggle just to live now.

    I've experienced some gasping for air. It occurs right at the moment that I am about to fall asleep. Thus, it's very annoying. But it was brief this time, passing in only a day. We'll see what happens as I approach 300 mg.

    For what it's worth, I had a sense (followed by elation) that this higher dosage was going to work, that it would extinguish my craving for tobacco. It was just a premonition, however.

    The cross-eyes syndrome has abated even more. It seems to be going away – yet another great relief in this new life of mine.

    I go to 190 mg tomorrow. And I'm spacing my doses out over 3-hour intervals.

    Reply
  26. anonymous Dr.
    anonymous Dr. says:

    Chris,

    I think you are right in that everybody needs a different dose and timing. The fact that you got some craving tells me that maybe you would benefit from a still slightly higher dose (or rather slightly more frequent dosing i.e. 6 doses / day?). In that sense, missing out the last dose the day before might have to do with your craving. It is good that you stayed in control though…
    Your feelings of low mood: I have seen that in patients before with baclofen. In these patients I felt that the baclofen took some of the numbness away they had created with alcohol. Now that they had stoped they felt low realizing what they had done. However, the few patients of my who had this got through it and managed (as you do) to look into the future…

    Jim,
    it seems like your body needs some time to get used to the baclofen. The most worrysome is possibly the gasping for air bit. Do you breathe shallow before then? Especially if your lungs aren't very good you should probably slow down your dose increases. How are you getting on with taking them 3 hourly? It is probably not a good idea to be fixed on the 300 mg. As you (and others) described, baclofen works in thresholds. You might notice an effect at much lower doses (or at higher doses or even never?). Craving for cigarettes seems to be different to craving for alcohol. and I think worldwide there is very little (if any) experience with baclofen for this. So you have to be very very careful.
    M

    Reply
  27. Jim
    Jim says:

    Well, folks, you ready for this? It's working!!! On the cigarettes!!!

    I took my last dose (on day 2 at 170 mg) last night at around 10 PM, and at 11:20, it hit me. I stopped smoking – but not finally. I didn’t smoke between then and bedtime, around 1 AM.

    Keep in mind, I'm a chain smoker. The intervals between which I light up are about 15 minutes. That means that, every 15 minutes, I am compelled to light a cigarette. I have absolutely no will power to stop this. I am helpless. And keep in mind also that I am not an individual who has no will power. I just don't have any will power when it comes to tobacco.

    But, at 11:20 PM last night, I KNEW the compulsion was gone. It was only beginning to abate, but I KNEW it was leaving me. Thank, God, and thank Dr. Olivier. As I go to 190 mg today, it will only get better. I'm hoping I can stop at 210 mg.

    Dr. M, the 270-300 mg is not a goal, just a shut off mark. In other words, I won't go any higher. Thank you for your input. As I told Chris in a private email, nothing accidental has ever happened to me. I will proceed very cautiously. The gasping for air lasted only one day, that first day when I went from 130 mg to 150 mg. And no, I do not breathe shallowly. I notice no change in my breathing OTHER THAN that one moment when I am about to fall into slumber, at that very moment. (And I did not have the problem at all yesterday.) It's a strange thing. But it doesn't really scare me. It's just an annoyance. However, I'm aware of the danger. I know that Dr. Olivier was concerned, when he began his treatment, that he might stop breathing while asleep. Nothing bad happened to him. And isn't it interesting that Chris' breathing problem occurred when he awoke and mine occurs when I go to sleep?

    RE the new dosage intervals, the increased titration seems to be going a little more smoothly than the initial one (at 6 hour intervals). I mean, I still experience SLUF (somnolence, lethargy, unsteadiness, and fogginess), but definitely not as badly as I did when I began treatment. I don't know if the difference is due to tolerance or the new regimen, however.

    Anyway, to finish up, when I awoke this morning, I immediately lit a cigarette. Mornings will definitely prove to be my testing ground. It's the most difficult time for me to resist having a cigarette. And I have since smoked at my regular intervals. But I just took my 9 AM dose, about 20 minutes ago, and, as I write this, I can feel the compulsion to smoke lifting.

    Reply
  28. anonymous Dr.
    anonymous Dr. says:

    Jim,
    it is good to hear that it has some effect on your smoking too. Well done and this is certainly something that needs further investigating. It is interesting that quite a few of my patients too said that the craving for smoking is stronger and that higher doses of baclofen seem to be needed.
    I am not too sure about when you take the first dose, but it seems like a higher dose first thing when you wake up (ready and at the bedside before you get up & dressed rather than the cigarettes) might help with the smoking. From my perspective, I would be happy for my patients to take more than 300 mg / day, although I think this would be very rare and I never had anybody who needed more than 300 mg to block craving for alcohol. With regards to smoking (and other addictions) it might be different. I believe that in few years time we will know more…
    Congratulations again,
    M

    Reply
  29. anonymous Dr.
    anonymous Dr. says:

    Chris,
    re your post on 17/6. I have seen patients eat better (more protein, not only calories as alcohol) because they stopped drinking with the baclofen. I haven't seen anybody gain weight other than that (previously malnourished patients). Do you crave for food?
    M

    Reply
  30. baclofenremedy
    baclofenremedy says:

    No not at all! I just don’t seem to be able to lose the weight, I am sure it is something to do with the baclofen as whenever I had stopped drinking for any period during my alcoholism the weight fell off me.

    Reply
  31. karljames
    karljames says:

    hi there, i have read all the blogs and everything. I have just orderd dr olivier`s book aswell. My name is karl from liverpool. I find i have same problems as the doctor and other people who have trid this drug. I have search for the doctors email adress, becuase i am looking for advice on how to get the out of liciense precscription. does any one have any advice for me??? thankyou karl

    Reply
  32. Jim
    Jim says:

    Here is my post from Friday, which I wrote offline.

    Hi, everyone. Much to report.

    I’m at 210 mg. I’ve had to deal with extensive SLUF (see above). RE Chris’ report of side effects, he’s right on. To reiterate them myself, I’ve experienced (the first week) severe, crippling arthritis in my left wrist. I was nearly unable to use my hand. That passed entirely. My gate has become much more agile and limber, although unsteadiness (part of the SLUF) has been a constant though minor problem.

    My dreams were initially much more vivid, but that passed also. I have not had any strange dreams, however. In contrast, many years ago, when I had a slipped lumbar disc, I was treated with Flexaril, another muscle relaxant. Flexaril caused me to have extremely violent dreams. It got so bad, waking up extremely upset and frightened, I had to stop taking the stuff. I have had nothing like that experience with Baclofen. The few vivid dreams I had were all very pleasant and normal.

    Baclofen definitely causes an extremely overactive libido. For me, the problem began immediately, at a low dose. I find myself overwhelmingly “in the mood” at very inappropriate times. This has been the most major difficulty caused by this medication, in my experience. The SLUF, which is intense, has been minor, compared to the libido problem. This is significant because those individuals who may undergo this treatment and who also are criminally inclined will most definitely require intense monitoring, no doubt about that. I hope the medical profession does not let this report go unnoticed. This is not a minor issue.

    My gasping for air, as previously reported, has passed entirely. Though the experience was a little scary, it only occurred at the exact moment I entered slumber, and I never feared that I would stop breathing in my sleep. I continue to take a daily antacid, but I do not know if it cured this side effect nor would I be willing to stop taking the antacid to find out.

    I have experienced no nausea whatsoever, but I also have not had a single drink. Nor have I noticed any numbness in any of my extremities. However, itching in my feet and hands is definitely a noticeable side effect, minor and intermittent but non-abating.

    Weight gain has been significant, due to a pre-existing craving for sugar, but I do not care. The elation that my abstinence has brought me far outweighs any disappointment that Baclofen has caused me, far and away.

    As for depression, this is a complicated matter for me to comment on.

    My alcoholism became a serious problem four years ago. I believe it was compounded by the fact that I am involved in plaintive litigation that is – and has been – ongoing for way too long. As a result of that litigation, I have been subjected to incredibly extensive and attritional surveillance. Consequently, I became depressed, to the point of becoming suicidal, at which point I said “no way!” and then found the strength to begin my long, difficult ascension toward the dawn. The first thing I resolved to do was to stop drinking, which led me to where I am today – totally abstinent. It took me two years to find my way out, but I succeeded.

    My point is this: when I began taking Baclofen, I was clinically depressed. The effect of Baclofen on my depressed state has been profoundly remedial. I am most definitely far better off, with regard to depression, after taking Baclofen than I was before taking it. Now, if I had not been depressed before taking Baclofen, might I have become depressed? I would think so. But there’s the conundrum. Being depressed, Baclofen had the exact opposite effect on me. It acted as an incredibly powerful anti-depressant, in my instance.

    As for my fond remembrances, the higher dosage has killed them as well. I feel I have most definitely broken the grip that alcohol had on me and that the entire issue is well behind me. I am completely free.

    Reply
  33. anonymous Dr.
    anonymous Dr. says:

    Dear Karl,
    I agree with Jim, I urge you to find a GP to prescribe you the baclofen. If your GP needs some help, I am sure Olivier Ameisen would help to get some support for your GP. Including myself there are at least a handfull of doctors in the UK who prescribe baclofen to several people. But be aware, GPs are not obliged to prescribe this and at present quite a few would feel uncomfortable doing this on their own.
    Hope that helps and good luck!
    M

    Reply
  34. anonymous Dr.
    anonymous Dr. says:

    Jim,

    Thanks for your interesting & open reports of your side effects.
    Re: pain: I have seen it in a small number of patients, in particular one who had a number accidents in the past and had pain at the sites of old injuries.
    re: unsteadiness: More common, in my experience mainly in patients who have drunk so much in the past that they have damaged their nerves through alcohol. Does also go away, when doses are stable and improves with staying off alcohol (can take months or years).
    re: vivid dreams: again relatively frequently (~ 10 %). In the experience of my patients are mostly pleasant. Baclofen can stop dreams about alcohol, but some patients experience strong vivid dreams (or re-living of past experiences). From your past medication you might have a predisposition for this.
    re: libido: this is interesting since one of my patient told me about pleasant dreams with a grim in his face, but didn't want to tell me more. I suppose these were sexual dreams. Some of my patients are probably too ill to experience the increased libido. Your warning is appreciated and I will probably ask patient about "problems with too much libido" before i start baclofen in the future. In a way I would have expected that if the libido is obsessive i.e. like a craving (e.g. in "criminally inclined") then I would have expected the baclofen to improve this? But maybe you can enlighten me on how you felt it made a difference? Did / do you think that the dosing regime (less frequent high dose vs. frequent lower dose) made / makes a difference?
    re: gasping for air: I am glad that is over. I would have thought that if you are on a stable dose or if you do not increase the dose by more than 10 mg per day there is no risk of that.
    re: itching in feet and hands: I would have thought this is related to nerve damage again (medical term: neuropathy). Should also get better as you are on a stable dose and as the nerves heal slowly.
    re: weight gain (craving for sugar): Again, a bit counter intuitive. I would have expected the craving for sugar rather to go down (although also here there might be a threshold effect as it seems to be for other cravings). Is it a substitute because you fill time you previously spent drinking with eating?
    re: depression: A difficult one as you say. I feel that baclofen decreases the numbness people induced by drinking (see the drinker in the book the little prince who drinks to forget that he drinks…). In that way it might make people realize for the first time (unmask) how bad / sad and almost hopeless their life was. This is an effect of the therapy and being off the alcohol. On the other side, there is probably a real effect on the mood in that baclofen seems to reduce very high and very low moods (flattened affect I referred to earlier). One carer told me that the patient is not as depressed as she was but she is also not as bouncy as she was. This improved a lot and got back to normal (from what I know – need to check next time I see them) with some antidepressants and after several months (5 or so) on baclofen.
    Hope this helps you and others understand how baclofen works. I would be interested on other experiences on this subject…
    M

    Reply
  35. Jim
    Jim says:

    Hi, Doctor. Hope you are well. You too, Chris.

    RE, “pain at the sites of old injuries,” THAT”S AMAZING! Your expertise really shines through. The only bone I ever broke in my entire life was that same, left wrist, when I was a boy.

    As for the libido issue, it was wearisome, really. As for my concern for the criminally inclined, I thought about it some more and wondered if the Baclofen might have some counter-effect on their impulsiveness. Hopefully, it will. But, if it doesn’t, in my opinion, the danger is very real. I see someone getting hurt as a result of someone else taking Baclofen and not being able to control themselves.

    I have not noticed any difference with the new regimen. Maybe the SLUF isn’t so intense. But when I increased my dosage (more on that in a minute), the libido issue, which had subsided, came roaring back, and there wasn’t any doubt in my mind what was causing it, at that point. Just to give you some practical measurement of this effect, as I write this, my loins ache. (LOL) I mean, I’m worn out. I don’t regret it; it was fun. What I regret is that I had no choice in the matter. And being on the train and wanting to literally jump not one but more like ten women was very disconcerting. I mean, I was a driven man, and I didn’t like that. Previously, my libido was totally under control and absolutely not excessive. Under Baclofen it became just the opposite.

    The weight gain is indeed due to my using food to alleviate my boredom. But I just don’t care. Once I quit smoking, then I’ll tackle the weight, which was already a problem before this. I normally eat a low carb diet because carbs have a noticeably depressive effect on me, but right now carbs are helpful, so I eat them.

    And now to the matter of my having increased my dosage beyond what was obviously my maximum, abstinence-inducing dosage. This was a mistake.

    Saturday afternoon, I began to experience what I believe was the onset of respiratory failure.

    Chris and I debated whether I should disclose this incident, and we think people who self-prescribe should be aware of the dangers. It is dangerous to go it alone. Do everything you can to find a willing physician.

    I was able to overcome what felt like an imminent shutdown of my lungs by breathing forcefully and deeply. The crisis lasted an hour. I immediately skipped my next dosage, and then reduced my daily dosage for that day from 210 to 150 mg. Of course, there was some risk in doing that as well, so I carried an emergency dosage while I carefully monitored myself for any symptoms indicating Baclofen withdrawal, which never happened.

    The lessons learned are several. The maximum dosage is entirely individual, so do not adopt and then aim for a theoretical dosage. Proceed very slowly. Immediately upon reaching abstinence, that is your maximum dosage. Do not exceed your maximum dosage, ever. And do not use Baclofen to treat your tobacco addiction.

    Anyway, I’m fine, despite feeling stupid. And to return to the libido issue, the very next day, having gone from 210 to 150 (which, again, is a dangerous move), my overactive libido was noticeably less so.

    Best to everyone.

    Oh, one last thing, Chris and I also discussed whether it was a good idea to refer aspiring self-prescribers to my reliable, cheap source for Baclofen, and we decided we didn’t want to assume any liability. There are plenty of non-prescription drug providers out there. So, if you just keep looking, you should be able to find generic Baclofen $0.28 for rx.

    Reply
  36. Jim
    Jim says:

    A question for Dr. M: is there a protocol for maintaining a maximum, abstinence-inducing dosage, as far as duration? I feel confident enough to begin titrating down. I know I'll be on Baclofen for the rest of my life. And I have no problem with that dependency. And I know I will continue to experience cravings, which I will treat with low, emergency doses. But I'd really like to reclaim some normalcy. Obviously, I presume no physician-patient relationship between us.

    Reply
  37. anonymous Dr.
    anonymous Dr. says:

    Dear Jim,

    That's a difficult one and of course I can't give specific advice. There are several reasons to want to cut down the baclofen:

    1) side effects
    2) you don't need it / costs.

    As for 1 (which I suppose is not the case for you): if side effects are bearable it is often worth waiting for a week or so because the body gets used to it.

    re 2: There is very little experience about this. I had a few patients who relapsed while on baclofen (forgot doses, got into situations where they developed breakthrough cravings) so I would be very very careful. I am here trying to summarize my "rules" when discussing this with patients:
    1) The patient has to experience his/her dose of complete symptom suppression: i.e. the dose / regime that completely blocks his/her cravings, thoughts about alcohol, urge to drink & dreams. This is important so that the patient is confident it works for him/her and it works completely & reliably. Some patients only noticed a reduction in craving intensity and then it is not a good idea to reduce.
    2) The patient has to be on a stable dose without any drinking / cravings: i.e. the patient has found his/her dosing regime and is on this regime for say 1 or 2 months. With this regime he/she manages complete symptom suppression virtually all the time. The dosing regime might included irregular "as needed" doses (examples are my patient who goes shopping on a monday morning and takes an extra dose. Another patient of mine now after >2 months of abstinence regularly visits an old friend who is an alcoholic who drinks bottles of vodka in front of him. This obviously requires extra doses preferably taken well before the temptation and the patient needs to know which doses he/she needs in these situations. By the way, this patient of mine on these days takes 380 mg which is the highest daily dose in my patients. Patients will then also know how long it takes for a dose to work and how long its effect lasts (this might vary between the number of pills taken and is different from patient to patient). If the patient hasn't had this experience over time with the background dose and extra doses needed then there is a risk of strong breakthrough craving and I am worried patients go back to drinking, don't take their medication and it is impossible to contact them…
    3) The patients sleep has to be back to normal: I do believe that having a normal sleep pattern (sleeping at night, being awake during the day) is a sign of a dosing regime that works for the patient. It shows that the patient knows what doses / regime they need to get proper sleep (which has in most cases been a problem). This might include 2 doses shortly after each other or a higher dose or an extra dose if / when they wake up in the middle of the night. I have been accused of using baclofen as a sleeping tablet, but since many of my patients have used alcohol to get some relaxation or sleep I think it is justified to use baclofen to help them. It seems to be much more effective than other drugs in doing that.
    4) The patients life has to be "normal': By this I mean they have found a routine and there are no expected "stresses" such as court hearings…
    5) Some patients had (long) spells without drinking even before they were on baclofen. If this is the case I want to be sure the patient understands what happened in these situations, what triggered the sudden drinking and they need to have strategies for these situations before I would consider reducing the dose. Especially for these patients support from community alcohol team, AA, relapse prevention courses, … are important. But since baclofen deals only with part of what makes people drink, the other issues need to be addressed.

    Reply
  38. anonymous Dr.
    anonymous Dr. says:


    6) Some patients find it difficult to do the "flexible dosing" & "pill in the pocket". They might lack the mental flexibility or understanding of this dosing. Typically they say something like "I do as I am told – you are the boss". In these patients I am extra cautious about reducing because they might not take an extra dose when needed.
    -> If I feel dose reduction is safe according to the points above, I would go very very slowly (as do the neurologists using baclofen for spasticity). For example I suggest reducing by 10 mg per day (1 tablet a day less) every month or so. I discuss which dose to first reduce (e.g. the mid morning dose if this is when a patient goes to an AA meeting and wants to be particularly alert for example) and I discuss a plan B i.e. "pill in the pocket" for when the slightest thought of alcohol / craving / urge re-occurs. If there is any problem or change in situation an increase in dose might be necessary. I have seen patients who needed an increase in dose after several months being stable on a dose (even more than 6 months). I suppose if you know how the pill works in you one could be a bit more adventurous, but there is an obvious risk and the stakes are very high. In the grand scheme of things if you get over a period of a year from a dose of say 200 mg to a dose of 100 mg than the pill burden would be much less and for as self funder like yourself it would have financial advantages. I think Olivier is now on around 50 mg / day and my gut feeling would be not to go lower than 50% of the highest dose ever taken in the first year or so. As patients change their life and learn to live & go through the stresses of life without alcohol, the craving in situations of temptation should get less, but even years after stopping drinking I suppose most people need some medication and should have some available (I have a patient who was abstinent for a while without any medication, but needed some baclofen over the Christmas festivities. Baclofen did the trick and he is off it again (but might need some again in winter…).
    I appreciate that these are very strict rules, designed for safety in patients who tolerate the drug well and don't experience side effects and said relates to the type of patient I have who have severe organ damage due to the alcohol and in whom any drop of alcohol leads to further damage (e.g. in liver inflammation and scarring the liver sometimes takes over a year to regenerate without a drop of alcohol and any alcohol can trigger the vicious circle of liver inflammation and damage). In patients in whom this is not the case and in whom "controlled drinking" is acceptable, the situation might be different.
    I hope this helps you and others who consider reducing the dose.
    Anyone knows what happened to Karl?
    All the best,
    M
    (sorry for the long post again)

    Reply
  39. Jim
    Jim says:

    Most appreciated. Read every word. Will re-read a few more times. I am at 120 in 6 doses. Would like to get below 100 with emergency doses. Will absolutely NOT take a single drink. Instead, I'll re-up my dosage. More later.

    Reply
  40. Jim
    Jim says:

    Actually, with it fresh in my mind, let me go through your most recent post now.

    It’s the side effects that are getting to me, though I still have some patience to bear with it, given my miraculous abstinence and my resolve never to drink again. Specifically, my patience is wearing thin RE the somnolence. And now I’m not so sure I OD on Baclofen as the apparent lungs-shutting-down may, in fact, be a worsening condition due to my smoking. At the moment, I am experiencing the same symptoms at a lower dosage. No doubt, if I would just start using the inhalers instead of a cigarette, these symptoms would subside. So, I’m not sure I OD.

    Breakthrough cravings would definitely be my biggest threat. But I could treat them with an emergency dosage, which would kick in within 15 to 60 minutes, invariably. I can wait that short amount of time. A resolve never to drink again, bolstered by Baclofen, is a huge asset.

    I believe I am at a stage where I am experiencing complete suppression. My last cravings were my “fond memories” on June 11. There has been absolutely nothing since then. I feel I have achieved a firm farewell. I would consider any dosage at which I experience any thoughts about alcohol to be insufficient, and I would raise my dosage slightly.

    I am still working on establishing a regular sleep pattern, which has proven to be impossible without exercise. If I exercise, my sleep pattern is normal. Otherwise, it’s not.

    As I go forward, I know that flexible dosing will be my routine. I am proceeding with a plan to implement it with finesse.

    Karl, please tell us how you are planning to proceed.

    Chris, have you noticed that the online pharmacies are using the title of your post, Baclofen Remedy, to optimize their search results on Google? You're famous.

    Reply
  41. anonymous Dr.
    anonymous Dr. says:

    Jim,
    Sorry, I did answer before, but somehow it didn't get sent off…
    From what you write, I do think you should see your Dr. This sounds like there is something going on in your lungs. I do not think it is related to the baclofen: a) I have never seen it (lungs shutting down) before with baclofen b) the type of breathing problem one would expect is rather the breathing muscles getting lazier / weaker as you get more and more sleepy / somnolent / stuporous / comatous. c) there is no mechanism of the GABA receptor on which baclofen acts which would explain that. d) dose reduction didn't help.
    I would worry whether there is something else going on (infection, COPD/emphysema, or something else with the lungs or heart). I would therefore think somebody needs to examine you, to tests (chest XR…) and find out what is going on. I would have thought it is safe to continue on the baclofen at the current levels while this is going on and your doctors might want to seek some advice on the type of dose you are on. With regards to your experiences, cravings… it seems like you are getting there; if there are clear times of the day e.g. where you rather get somnolene but not craving then you could reduce that particular dose (and you might have to half or quarter the tablet to get the required effect without the side effect). Alternatively, a few days on the same dose might get your body used to it (you seem to be on about 20 mg 6 x / day or so). This might make you also realize what is really due to the baclofen rather than just ups & downs of your lungs due to other things (as above).
    From what I see you have gone from 210 to 120 mg within a couple of days – I would have thought that in itself this is a lot your body has to cope with. Therefore some continuity in dosing might help.
    Hope that helps. I'd be interested in your flexible dosing (how do you split the doses during the day, when do you need extra doses…) this might help me giving my patients some hints.
    All the best
    M

    Reply
  42. Jim
    Jim says:

    Thanks. I actually called my doctor this afternoon, and I see her tomorrow. I think it is asthma coming on. I do regret mistakenly attributing my difficulty to the Baclofen because the critics might use that to argue against its use. But, let it be reported that I was previously diagnosed with COPD (in 2008), and, no doubt, it's worsening. The drastic titration in just a few days was not cool, but I was scared. I'm at 120 (20 mg X 6) and I have absolutely no cravings or even thoughts of drinking. And the bronchial spasms and labored breathing continue, despite the lower dosage. I no longer believe there was any correlation.

    Reply
  43. Jim
    Jim says:

    Well, here's some follow up. Atenolol, a blood pressure medication, interacts with Baclofen. I already knew this. Baclofen may not lower your blood pressure, but it will relieve anxiety and it will cure alcoholism, both of which will themselves lower your blood pressure. So, if, on top of that, you take a drug that lowers your blood pressure and your blood pressure has already returned to normal due to relaxation and abstinence, then you develop hypotension. By the way, atenolol will also cause airway restrictions. My doctor didn't know this, apparently. I had to explain it to her after doing some research and learning it myself. What do you think? Time to find a new doctor? Oh, and after kicking and screaming, I finally wrestled a script for Wellbutrin out of her. I start tomorrow, which means it should kick in on July 5th. It will be interesting to see how that figures in. I take it, Dr. M, you believe anti-depressants can be helpful while undergoing Baclofen treatment.

    Reply
  44. anonymous Dr.
    anonymous Dr. says:

    Jim,
    You are right about baclofen & blood pressure (see beginning of my post from 11/6) and you are also right about beta blockers and airway obstruction: "beta mimetics" (drugs that stimulate the beta receptors) are given for airway restrictions (the "blue" inhaler). Therefore they are rarely used together.
    Re: antidepressant and baclofen: I am not a psychiatrist, but a doctor who sees a lot of medically ill alcoholics, so my understanding is limited. But, the way I see it is that when people stop drinking after being on alcohol for a long time (with whatever method: willpower, baclofen,…) they will have serious changes to their life which can lead to changes in mood and the disorder depression. I would have thought that everybody will need some support in this difficult time, many will need psychological support and some will need antidepressants. So, I don't think it is specific to baclofen, but to the process of stopping drinking and the life changes associated with it. The only thing I have noticed as I said before is that baclofen can possibly flatten the emotions (positive ones as well as negative ones) but I might have wrongly attributed this to the baclofen?
    Hope this helps.
    M

    Reply
  45. Jim
    Jim says:

    I was in the shower today, and I thought, "Gee, wouldn't it be fun to get drunk?" Right out of the blue. That's the first, single thought about drinking I've had in a while. I suppose it's because I went down to 120 mg. So I added an extra 10 mg today, just for today. I'd like to taper down, but I know I'll probably never be able to get off this stuff entirely, and I have no problem with that.

    My cravings always occur in the afternoon, so I see no need to take any Baclofen in the morning. I see starting at noon with my first dose as a possibility.

    I started Wellbutrin today. It will be interesting to see how that adds to the mix.

    To Dr. M: I live in an American city that provides the world with some of the best doctors, both in education and training. If I were to look for help adjusting to a life that is now free of alcohol, could you tell me what I would look for? What would I go to the hospital and ask for? Or what would I ask my PCP (primary care physician) for? I have a sense you are referring to something that is very important, but I have absolutely no idea what you are talking about.

    I saw a psychiatrist when I was looking for a prescription for Baclofen. He was the only one who even considered it. Though I am strongly anti-psychiatry, I actually liked him. I think I'll ring him up, now that I'm abstinent. If I were to ask him for some help, what kind of help would I ask him for?

    Like I said, I think you have a good point. I just have no idea what you are referring to. Thanks for your help.

    Reply
  46. Thistle
    Thistle says:

    HI Jim, Chris, Dr M

    Been reading the posts and its great to here from folks that are all ready taking Baclofen, i have been taking it now for about 2 weeks and have to say im not enjoying it at all, i cant get over how foggy my thoughts are but i dont want to start going on about this just yet or tell my story so to speak as im finding thinking clearly very hard at this time, once it clears i'll talk more,

    Thanks very much for starting this Blogg and a BIG thank you to Dr M….

    Reply
  47. Thistle
    Thistle says:

    oh Jim here in scotland they have whats called the "addiction team" they offer couciling and possible refer you to a Physiologist where you would maybe talk about what i like to call "Alcohol anxiety" but realy its not my place to talk about this, so maybe in America you could look for similar
    T

    Reply
  48. Jim
    Jim says:

    Thistle, don't be shy. You're welcome to participate, especially being in treatment. When you feel better, I'd be curious at what dosage you stopped drinking. Also, what were the circumstances under which you began Baclofen? How did you hear about it? Just curious. Best of luck to you.

    Chris, I'm wondering if maybe you need to go to a higher dosage. Dr. M talks about a patient he took up to 380. Maybe you could talk to your doc.

    I'm titrating down. The sleepiness at 120 was just too much for me. I skipped my last dosage last night and my first dosage this morning. At 10 AM, I began to feel sick with a headache. So I took 20 mg. It looks like I'll finish the day with 80 mg total, and I feel much better, but still a little woozy. 120 > 80 is probably too steep a reduction. But I'm glad I did it because now I know what to expect (how I'll feel) when my body needs Baclofen. I feel good at 80 mg. We'll see what happens with the possibility of alcohol cravings returning. I'm not at all scared that I'll start drinking again. I feel very confident, especially because I feel I DID say a firm farewell to this horrible demon. But we'll see. And everyone will know, as I will continue to post.

    Reply
  49. Jim
    Jim says:

    Thistle, I know precisely how you feel.

    Hey, Everyone, just wanted to log back in before ending the day. I finished up at 100 mg, not 80. It's not cool to go too quickly, and that's what I'm trying to do. I don't want to appear to be advocating an unwise reduction in medication. Night!

    Reply
  50. anonymous Dr.
    anonymous Dr. says:

    Hi Chris,

    Sorry to hear about your relapse. Did you take some of your baclofen during the relapse? Baclofen + alcohol is said to make you very tired and people say that the drink less (shorter sessions and less at a time while on baclofen). This re-emphasizes my thoughts about risks in forgetting a dose / reducing the baclofen dose too early. I did write quite a bit about it on the day of your previous post. Hope you get back to your normal rhythm again.
    This highlights also what I meant to answer to Jim (but also had internet access problems over the last couple of days):
    People drink for all sorts of reasons, cravings is only one of them and therefore baclofen can only deal with part of the problem. Sometimes the start of a drinking session is triggered by something and then the viscious circle with craving… starts. Here in the UK the primary care physicians and psychiatrists work closely together with community alcohol teams, nurses, social workers set up to help people come off the alcohol and stay off the alcohol. In hospitals there are alcohol liaison teams linking in with these. There is a whole spectrum of what is on offer: counselling, group sessions (you must have heard about AA, but there are also other ones). All these are different, some patients find some groups or counsellers too prescriptive but often people find something that helps. The type of help that brings you forward probably depends on what makes you drink, your personality and what stage in the process you are. Depending on whether you are still drinking, just stopped or are off the stuff for several months and need consolidation you might have different needs. Did you read Olivier Ameisens book? It hints at some similar things, but the setup in NY might be different to other places in the States.

    Thistle: How's the craving / thoughts of alcohol / urge to drink / dreams about alcohol? If you don't have these then and especially if you are sleepy it seems like it might be worth trying a lower dose (during the day). I had a patient where I had to go down with the dose, some craving came back (she was very committed like Jim and stayed of drink despite some cravings) and after a while we could go slowly up with the dose again and there were no side effects at a later stage (and cravings blocked again).
    Hope that helps.
    M

    Reply
  51. Thistle
    Thistle says:

    Dr M, Jim

    I'm seeing a Doctor out with my GP, after being given advice from a sister at a hospital I have spent some time in due to abusing alcohol, and jumped at the chance to try this treatment. Now I have been taking it for a little over 2 weeks and im on 150-200mg, I have an equilibrium effect going on here, everything is dumbed down to an equal level of acceptable tolerance, I still have urges to consume alcohol, but not so much during the day, its always at night when I experience lack of sleep due to feeling boxed in, so during the day im going to take a lot less and increase my dose at night, thankfully I have never experienced dreaming of alcohol as yet and hope to god I don't 🙂 Dr M I was wondering if you could tell me (when you have enough time of course) how this drug works am I right in saying it floods your brain with serotonin and this is why we experience this flat feeling? I have not had the pleasure in reading Dr Ameisen's book as yet as im not working at the moment money is tight, do you think we would ever here from him??

    I personally don't see this as a cure and I feel its important to realise this, people have alcohol problems for many different reasons, different types of alcoholics, don't get me wrong here I think its great there is something that takes the cravings away but also I believe what Dr M has said in previous post about seeking other forms of help along with having Baclofen on board, do you take the red pill or the blue pill, we are alcoholics first and foremost and no pill will ever cure us of that fact, it will help us with out a doubt im sure of that fact…

    Reply
  52. Thistle
    Thistle says:

    jim, i stopped drinking about 1 week before i started taking baclofen, and upon starting i was on 50mg a day, well jim my circumstances were basicaly simpile, i would go on a binge untill i made myself ill and could drink no more (requiring hospital admission) i would stay off it for a few weeks to a few months but would always end up back on it due to not being able to sleep and all will power would go out the wondow at this point and i would be back where i started

    Reply
  53. baclofenremedy
    baclofenremedy says:

    Hi Thistle,
    Are you feeling any better? I can say from personal experience that on the lower doses the side effects do pass or at least I did for me, but on the higher doses they tended to stay and that’s why I am reducing my dose as the high doses were cancelling out the benefits.

    Reply
  54. Jim
    Jim says:

    Greetings, everyone. I'm down to 60 mg. Going for 0 mg with emergency doses only. The grip is broken, and I am free. Turning my attention now to other addictions, and I'm making headway there as well.

    By the way, the pulmonary difficulties I mentioned earlier are now confirmed to be due to something other than Baclofen. Baclofen never hurt me. Quite the contrary, Baclofen saved me.

    I feel I have contributed substantially to this blog. I tried to report my experiences with Baclofen accurately and thoroughly – for the benefit of others, and I believe I did.

    I think it is time to move on now. I'll post a few more times – in a few days. And of course, I'll stop by once in a while and chime in on whatever may be going on. Hope that's okay.

    Reply
  55. Thistle
    Thistle says:

    Jim, i think you should think very hard about what your doing, or you will end up back to the demon drink my friend, Dr O is stil (from what i reed)on 50mg a day and no doubt takes more if he feels the need, think about what your doing and why your doing it!! you have only been taking it for a few months, DO NOT THINK YOUR CURED GET REAL!!

    Reply
  56. Thistle
    Thistle says:

    hi Chris, feeling a little better, but im getting more urges to drink, getting worried now as i had a drink last night..hate myself for doing it

    Reply
  57. Jim
    Jim says:

    Thanks, Thistle. I'm also curious to see how bad the cravings get. But, when I get them, I'll simply take a couple pills. In an hour or less, the cravings will be gone. If they're not, I'll take one or two more. Simple as that.

    I'm still at 60 mg. I go to 40 tomorrow, two at 3 PM and another two at 6 PM, my old witching hour. I slept a full 8 hours last night. Cross-eyed syndrome is completely gone. My head is very clear. I have had absolutely no cravings or thoughts about alcohol. Feel very, very good – and very secure.

    Reply
  58. baclofenremedy
    baclofenremedy says:

    Oh that’s good Thistle, but the demon cravings not so good! As I’ve said before this is no walk in the park, you’re gonna have urges! I’ve been on quite a high dose for quite a while so I’m looking forward to coming down and hopefully the urges will be minimal and I am going to take emergency doses if the situation arises. If you get a craving take an extra dose of baclofen that really does work. I know you are having side effects I have had loads of them but don’t let that put you off they do get easier on the lower dose, on the higher dose side effects always seem to be with you most days.

    Reply
  59. anonymous Dr.
    anonymous Dr. says:

    Dear all,
    Sorry, was busy for some days – only just catching up. Blogging is blocked on work computers – only get comments by e-mail.

    Chris: I didn't feel upset and didn't want to upset anybody. The paragraph that refers to Oliviers book was the one for Jim trying to answer his questions about services available in the UK and what I feel is needed in addition to baclofen.

    Jim: I think it is courageous what you do. I have had patients relapse (not just a lapse but a proper relapse) after about 6 months or so on a stable dose. Not sure what triggered the relapse. On the other hand I had patients who felt they have "overcome their addiction" but it didn't last very long. Therefore want to emphasize the risks with rapid reduction. Clearly, side effects can be a problem, so it is a trade off which everybody has to decide with their Dr.

    Thistle: Your question about how baclofen works is a difficult one. It seems to attach to a receptor in different parts of the brain and does things that are in some ways similar to what alcohol does (but on the other hand doesn't do some other things which alcohol does). Although it is a very old medication there is not much knowledge about this but Oliviers publications and trials have triggered more interest in this and I am sure that in 5 years or so we will know more.
    Hope that helps.

    M

    Reply
  60. Jim
    Jim says:

    Had a good day yesterday and today. I've decided to stay at 40-50 mg for the next month and see how that goes. But I am not experiencing any difficulty or temptation. It's nice to be back to normal – and not drinking.

    Reply
  61. Jim
    Jim says:

    Today is the beginning of a national holiday here in the US, a traditional party time. I had some extremely faint urges at the usual time of the day. Rather than risk anything, I took an extra 20 mg (50 mg total for the day), and, BAM, back in control within minutes.

    Earlier when I said I was going down to 0 mg, I didn't mean next week (or, if I did, I quickly came to my senses). The way it's probably going to work is that I'm going to be on 30-50 mg/day until who knows when. But I would like to have some days when I don't need any at all. And then I would like to have more of those days. That's my goal.

    Right now, life is good. People have begun telling me "You look fantastic," and "you have this glow," and "did you shave or something?"

    Sunday is my scheduled day to quit cigarettes, as that is the day the Wellbutrin kicks in. I might take a little extra Baclofen that day. We'll see. Once the cigarettes are behind me, then I start working on the weight.

    Reply

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