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katallus

New to the Forum, not new toBaclofen

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katallus

Hi Everyone/Anyone,

 

I am pleased to have found this forum. I have been using Baclofen for 2 years with mixed results. Very concerned about the addiction/withdrawal side of being on Baclofen. I am in my early 50's and based in the south west of the UK. I will write my story here in due course, just wanted to see how active this place is as it looks like most of the posts are from several years ago. Is there anybody out there?

 

 

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guardian

Hi katallus,

This forum, as well as its predecessor – the medication section at mywayout – have certainly slowed down in traffic.

I wouldn’t let that deter you from sharing your experiences. People are checking in and will gladly offer feedback.

There are many – including myself – who have achieved success in achieving abstinence or indifference thanks to baclofen therapy who were once very active here (and at MWO) and will be of eager assistance and can be an invaluable resource with your journey.

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katallus

Thanks for the response Guardian, it's good to hear that there are people out there. Just got home after a long day so will try to put down more detailed thouhtd in the morning. Much appreciate you getting back to me.

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Otter

It was busier a few years ago when baclofen was new.  Now it's likely you can go to a doctor and get a prescription without having to order on-line and get advice from a handful of people on internet forums.

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guardian
1 hour ago, Otter said:

It was busier a few years ago when baclofen was new.  Now it's likely you can go to a doctor and get a prescription without having to order on-line and get advice from a handful of people on internet forums.

I was under the impression that, at least in the USA, there are only a handful of doctors that will prescribe it off-label for alcohol dependence. I have achieved what I intended with baclofen, but I would very much like to be supervised by a physician ongoing in case I need someone to speak to another physician or legal entity on my behalf. 

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katallus

Hi Otter, thanks for the message. I have found that Baclofen is not available here with UK doctors. I had a pretty miserable time last Christmas when I accidentally ran out of my supply and despite being in a terrible state (I was close to seizure and totally absorbed with suicide) they told me to 'purchase from the street', which was extremely unhelpful.

Luckily I found a strip of Russian benzos I had forgotten about and was able to use them for a week, otherwise I think I may have died. I do not write that haphazardly, the level of despair was beyond. The shock of going baclofen free suddenly after taking 125mg daily for 18 months was horrific, I had not expected it at all. I wish I had found this forum then. Thank god using the benzo, Phenazepam, I seemed to pull through quickly. I think I can get more of these but I am particularly uneasy about ordering them as they clearly are narcotic and I worry there could be problems if a package gets opened en route to me.

 

I see you are in Cyprus. I was in Turkey two years ago and found that it was easy to buy 10mg Novartis Lioresal at the pharmacy with no script. I bought several hundred tabs but obviously, they run out. At one point last year I was considering getting a cheap flight to Cyprus to nip into Northern Cyprus to stock up. What is the situation on the island, I guess you have a prescription? Can you purchase o.t.c.?

 

I want to start taking Baclofen again as I am really suffering from reactive anxiety at the moment. I have a difficult period to get through and I know the pills work and I have roughly a 3 month supply here but I am concerned about refills. I wish I could get the medicine prescribed but it seems impossible. Anyone reading this in the UK who knows different please let me know.

 

I am uneasy about ordering from online pharmacies as I am concerned that were I to become dependent on them again and my supply ran out before I had time to taper I might get a repeat performance of last time. This is very scary.

I would be interested if anyone reading this might have any experience of taking the medicine for a period then getting off it.

Approximately 3 weeks ago I took 30-75mg a day over 3 days and then when I did not dose became pretty ill. The first symptom is a weird cold feeling on my forehead. This is followed with anxiety which gets worse hour by hour and dreadful sleep. I dealt with these symptoms by tapering strictly over a week going from 10mg to 5mg to 2.5 then clear. I found I was all over the place for six days in total and have not totally recovered.  I am unsure if this is unusual or normal, yet reading here I see that there seem to be a variety of 'normals'. People obviously process this stuff in different ways.

 

I would be very interested to hear from anyone who has done a successful taper though as the knowledge would be very valuable. I don't want to drink and I can't bear to carry on with the level of discomfort I am going through at the moment. I am confused as to whether my current uneasiness is a direct result of taking the medicine for a few days or if it is just my baseline anxiety. My experience tells me that Baclofen has something to do with it as the suicidal ideation that comes in waves, along with the feeling of electricity in my arms and head was present when I cold turkeyed at Christmas. 

 

This is all a bit garbled, forgive me but I am just going to type and send and see what comes back. Not in the right state to craft a fully formed post. Feeling uneasy, verging on panicky.  Anybody got any comments? 

 

Thanks

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katallus
 
 
 
15 minutes ago, guardian said:

I was under the impression that, at least in the USA, there are only a handful of doctors that will prescribe it off-label for alcohol dependence. I have achieved what I intended with baclofen, but I would very much like to be supervised by a physician ongoing in case I need someone to speak to another physician or legal entity on my behalf. 

My sentiments entirely. I just wish my doctor would even enter into the conversation but as the National Health Service is under so much pressure access to doctors is limited and there is no time to really discuss stuff. Tell them you have been ordering meds from the internet and they shut down. I can only conclude that there must be so many patients self-medicating that NHS policy is to say NO. 

I would be prepared to go to a private doctor but can't seem to find any signposts to anyone here. It is an expensive business going to a private doctor in the UK and I don't want to spend a minimum of £100.00 to be told to go away and they cannot help. 

 

 

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Tony

I found a US doctor who was willing to prescribe me 120 MG per day, but only temporarily. Basically, i am month-to-month. I also supplement with online orders. I've had no problem so far, but have wondered what would happen if they got shut down. 

When I reached 180 MG per day, I dropped to 1-2 drinks per day. I needed less sleep and had more energy. Then I upped my dose to 210 and took a trip to Amsterdam. The jet lag hit me hard, and since I got back to the US a month ago, I've suffered from insomnia. I go to sleep easily, but wake up every night around midnight. I've tried a variety of drugs under medical supervision. None has any effect. 

If I read long enough, I can eventually fall asleep.

Sadly, what really works is ... alcohol. So recently, in addition to my 1-2 drinks after work, I'm drinking 1-2 in the middle of the night.

My doctor knows everything I'm on (just not the dose of Baclofen I'm taking). I wish I could talk to a physician about this. I found a doctor in San Diego named Tom Horvath. He said he clinic will prescribe Baclofen. The clinic looks oriented towards people who want to reduce or quit drinking without embracing the 12-step approach. But I got the impression it might be expensive and they definitely would require at least one in-person meeting. I also never got an answer about how much of a dose they would prescribe.

Anyway, I'm really interested in people's experiences with tapering. When I was at 180 MG, I felt great. No symptoms. Lots of energy. At 200-plus, its a different story. Dr. Ameisen found "indifference" at 270 MG.

What does that feel like?

I am less interested in drinking, but I would not say I am indifferent. I no longer crave a certain level of buzz before I go to sleep. I am probably fine if I have only 2 drinks a night. I'd prefer to be only occasional.

One surprise to me was that I quit drinking caffeine when I hit 90 MG per day. I had reduce to 1 cup because anxiety. On New Year's Day I quit. I have no withdrawal symptoms, which I attribute to Balcofen. I went three months with no caffeine. Then I had a few cups in Amsterdam and thoroughly enjoyed them. Currently, I'm having a little caffeine on the weekends. 

That's what I'd like to achieve with alcohol.

Thoughts? Feedback?

 

 

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katallus

Thanks for your post, Tony.

I would be interested to know what time you take your final dose of Baclofen in the evenings before bed. I noticed that I might wake up suddenly in the middle of the night too, although usually about 3-5am, having taken 25mg usually around 10 or 11pm

I have, like you, noticed that somehow I seem to be somewhat impervious to other sleep medication when taking Baclofen. My experience suggests that I got on a cycle where I needed to dose every 4-6 hours around the clock. I also found that I began drinking again too but the effect of the alcohol wears off rapidly like the Baclofen is in charge.

I need to write a longer, more detailed post on this as I have a number of thoughts which are difficult to put straight down and need thinking through. I have to get to work and have found that because I am trying to write quickly I have not got what I wanted to say down in a cohesive way - just deleted a load of words as they were muddled. Hopefully, I can do write properly tonight when I get home. I am realising how important it may be to get this stuff written down.

Do you get any other symptoms? I found that between doses I can get a number of unpleasant manifestations usually starting with a cold sensation on my forehead. I can then get a strange electrical feeling in my extremities, generally my arms and fingers. My mind gets really busy and I start to feel a little panicky. Then comes he runny nose or the feeling of sinusitis, a bit like an allergy. All of this stuff can surface after 4-6 hours of not dosing and goes away within 15-20 minutes of taking a dose. I have also on occasion had night sweats.

Sorry that this is garbled - I just need to rush out the door now. Hope you have a good day.

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guardian
22 hours ago, katallus said:

My sentiments entirely. I just wish my doctor would even enter into the conversation but as the National Health Service is under so much pressure access to doctors is limited and there is no time to really discuss stuff. Tell them you have been ordering meds from the internet and they shut down. I can only conclude that there must be so many patients self-medicating that NHS policy is to say NO. 

I would be prepared to go to a private doctor but can't seem to find any signposts to anyone here. It is an expensive business going to a private doctor in the UK and I don't want to spend a minimum of £100.00 to be told to go away and they cannot help. 

 

 

I'm usually averse to being this bold, but I'm at the point where I'm going to start emailing every psychiatrist in my area and:

  • Informing them of my history of alcoholism.
  • Explaining that I have been self-prescribing baclofen, at what dose, and for how long, and
  • That I have achieved complete suppression of my alcoholism at my current dose (320-340mg).
  • Ask if they are willing to meet to discuss prescribing it and/or supervising my self-therapy.

At that point, I imagine a response from them will be a full-stop "no" or an invitation to a consultation to talk it over.

If the consultation is free or low-cost, I see no harm in meeting to discuss it further.

Barring unforeseen events, I plan on being on some dose of baclofen for the remainder of my life and I'll need a prescription and supervision at some point. You can only get on an airplane with several grams of an unlicensed prescription drug in a magnesium supplement bottle so many times before you run into trouble. Not to mention the danger of being incapacitated and going through withdrawal unbeknownst to the physicians providing my care at the time. 

 

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katallus

Way to go Guardian, I like your anger - it makes me feel good not to be alone. Just got back very late so no long post tonight but somehow I think there may be one in the morning. Onward and upward, I'm just about to get horizontal. Night night!

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Mom2JTx3

Hello! It’s nice to see some activity here. I was on a high dose of baclofen for quite a long time. I reached indifference at 320 mg. I stayed there for a while,  Maybe two years?    I started titrating down at the same rate that they recommend titrating up. 10 mg every three or four days (or 5 if I was experiencing SE). I did reach a point where the anxiety kicked in, so I stayed at the dosage for a while until it eased and then started titrating down again slowly.  I am now Baclofen free.  The most difficult part was the anxiety.  I took a lot of L-Theanine to help, but that has passed. 

I don’t use a maintenance dose because I can no longer drink without very bad side effects (DTs). It’s not difficult for me to be abstinent because I know what will happen if I’m not!  If I had continued to drink I would have kept taking it at a lower dose.

@terryk has an article on here about titrating down quickly if you’re running out.  It can be done in a relatively short amount of time.  I can’t put my finger on it atm.  Terry, can you help?  I wouldn’t let the fear of running out keep you from taking bac at all. Just be very careful about your supply and how long it’s going to last.   I know there are members here who have gotten off quickly.  I think @Jetsman32 was one.

I used to use Gold pharma successfully to supplement my prescription.  Did you check the section on prescribing doctors in the UK for information?  You will need register or log in to read this content. 

Welcome and I’m glad you found us :) 

Edited by Mom2JTx3

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katallus

Hi  Mom2JTx3,

 

Thanks for writing and discussing your experience and passing on tips and signposts. I must try getting some L-Theanine if it truly does work for the anxiety. I have had several Melatonin preparations which contained L-T but I have never tried it on its own. I think that I am perhaps in a similar place to you with alcohol, not that I have ever had DT's to my knowledge. I just have reached a point where I know that drinking would be catastrophic and my brain seems to have quietened down so that I am seemingly no longer incapacitated or overwhelmed by the desire to drink. I know that I simply cannot imbibe as I am fully aware where it leads so I just use logic to tell myself I cannot drink. I am not sure how sustainable this is as sometimes I might crave alcohol and at the moment I just tell myself I cannot have it and I ride it out. I guess it would be better if I could manage my drinking but I don't trust myself. 

 

The effect of this is that my social life has suffered as I isolate and don't attend social functions at all. I am divorced and live alone and I get mighty lonely at times and the loneliness seems to exaggerate my anxiety. Instead of drinking to take away my anxiety I have started thinking about using Baclofen again as a way of managing my state of mind, which can sometimes be a little dark with intrusive thoughts and unpleasant feelings. I sometimes go to AA meetings but if I am honest the reason for this is mainly for human contact. With the greatest respect to the good people of AA this is not the most ideal social club for a lonely person. 

 

Four days ago I gave in again and I tried taking some Baclofen to see if it helped manage the anxiety. I took a single 25mg tablet in the morning and I did feel, along with dry mouth and a little dizziness, some respite from the tyranny of the feelings. I took 25mgs the next day and yesterday I took two pills, one morning the other afternoon. Today I have had a pill in the morning and will probably take another in a few hours.

 

What concerns me here is that I can see that I am leading myself back into the cycle of addiction. Do you ever crave Baclofen or do you feel it is behind you? May I also ask how long did the end of your taper (the bit where you got the anxiety back) last? Do you take anything now to cope with feelings/anxiety? 

 

Obviously, I know that exercise is the best way to deal with my generalised feelings but I have zero motivation. I spend long periods alone watching videos or reading, procrastinating and generally feeling isolated. I guess I just need to force myself to get out more and to mix with people, manage my expectations and stop beating myself up. At the moment this is easier said than done.

 

I would love to hear more about your coping strategies.

 

Wishing you a productive, tranquil and fulfilling Sunday. I am going to finally get dressed (it's 3.00pm!) and head off to the supermarket as a way of occupying some time.

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Tony
On 5/10/2019 at 12:29 AM, katallus said:

Thanks for your post, Tony.

I would be interested to know what time you take your final dose of Baclofen in the evenings before bed. I noticed that I might wake up suddenly in the middle of the night too, although usually about 3-5am, having taken 25mg usually around 10 or 11pm

I have, like you, noticed that somehow I seem to be somewhat impervious to other sleep medication when taking Baclofen. My experience suggests that I got on a cycle where I needed to dose every 4-6 hours around the clock. I also found that I began drinking again too but the effect of the alcohol wears off rapidly like the Baclofen is in charge.

I need to write a longer, more detailed post on this as I have a number of thoughts which are difficult to put straight down and need thinking through. I have to get to work and have found that because I am trying to write quickly I have not got what I wanted to say down in a cohesive way - just deleted a load of words as they were muddled. Hopefully, I can do write properly tonight when I get home. I am realising how important it may be to get this stuff written down.

Do you get any other symptoms? I found that between doses I can get a number of unpleasant manifestations usually starting with a cold sensation on my forehead. I can then get a strange electrical feeling in my extremities, generally my arms and fingers. My mind gets really busy and I start to feel a little panicky. Then comes he runny nose or the feeling of sinusitis, a bit like an allergy. All of this stuff can surface after 4-6 hours of not dosing and goes away within 15-20 minutes of taking a dose. I have also on occasion had night sweats.

Sorry that this is garbled - I just need to rush out the door now. Hope you have a good day.

My last dose is between 4 and 5 pm. No matter what, though, I wake up around midnight. Last night, I stayed up reading for 3 hours. I'm enjoying the reading, but am a little sleepy during the day. 

I similarly feel like the effects of drinking seem wear off quickly. I almost go to bed now feeling fairly clear-headed.

My insomnia has abated over the last few days. I think the medical advice I got to be patient was good. If I can start getting good sleep again, I will be in an excellent place. 

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