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  • How Did You Get Here?   141 members have voted

    1. 1. Simple Question. How did you get here? Answers are anonymous but feedback welcome


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  • Latest Posts

    • Otter
      Baclofen is used to treat muscle spasm.  It loosens off the spasm so it's more likely that if you get stiffness in your leg at night, it's because the baclofen is wearing off.  That's my guess.  I find I tense up from stress a lot and that baclofen eases it off.  
    • guardian
      Tony, During my 1st run-up in baclofen dose (many years ago) I experienced extreme tension in my lower trapezius. This coincided with a significant bout of hypomania and associated sleep deprivation. I think it was more related to the "always on" nature of mania than that of baclofen. 
    • Felina
      Hi @soulfine99, I take both baclofen and gabapentin. I am currently on 100 mg baclofen and 400 mg gabapentin per day, with zero side effects. I was previously on a much higher dose of baclofen, but have tapered down over the years. The baclofen keeps the alcohol cravings at bay, and the gabapentin helps me to stay asleep throughout the night (I used to have horrible early morning insomnia). I have zero side effects from the combo, and have never had any problems with it. I think I added the gabapentin around 8 months ago.  The baclofen is prescribed by a doctor, but I ordered the gabapentin online to escape the headache of trying to negotiate it with the same doctor.     
    • Tony
      Hi --  I'm wondering if anyone has any experience with tight muscles. I've recently developed a super tight left hamstring that causes me to wake up in the middle of the night. I am getting a poor night's sleep as a result. I'm not sure if it is connected, but I wanted to know if anyone else had the same experience.
    • Otter
      Hi MJM Yes, our lives are good.  We've had some difficult times but who hasn't. Our life now is entirely due to baclofen.  It's unlikely my wife would be alive without it.  Life was unimaginably bad without baclofen.  It treated/cured her.  Without that, nothing else was possible.   Before my wife began treatment with baclofen we were under supervision by the social services for several years because of her long-standing alcoholism, previous marriage breakdown and loss of her children from that marriage,  and we were eventually taken to court to have our son taken away from us as well.  That didn't happen until shortly after my wife found baclofen and started her treatment.  She got baclofen by telling her doctor she needed it for stroke.   At the time, 2009, there were no doctors in the NHS prescribing baclofen for alcoholism.   We were taken to court, not because my wife had done anything in relation to our son, but because of an incident where she was going through severe DTs because she had not taken her baclofen for a few days and I, therefore, had her admitted to hospital.  While in hospital, she went into a kind of manic, hallucinatory state and grabbed hold of a nurse which resulted in  the police being called and, instead of my wife receiving treatment, she ended up in court...the court where I worked as a prosecutor.  One thing led to another and that incident was reported to the social services, who then assigned a social worker to come to our house to observe my wife's behaviour.   After the hospital incident, my wife was in a terrible state, going through withdrawals and totally devastated by being taken into police custody with inevitable consequences.   Since I had instigated her admission to hospital, and she was suffering from having neither baclofen or alcohol for several days, she was in an extremely volatile and depressed mood.  On top of it all, the social services took the position that they were going to insist that my wife and I separate and that my wife have no further involvement in my son's upbringing. They told me to organize getting my wife out of the house, or they would.   Effectively, at that point, our family was finished. That was in 2010.  When we got home after all of this, my wife was very upset.  I had to explain the whole situation to her. By way of background, my wife had been having problems with taking baclofen from when she started taking it in the spring of 2009, because she did not like the side effects.  I was trying to get her up to the dosage which I'd figured out was correct based on Dr. Ameisen's own experience and I was trying to get her to take 270 mg in a few doses a day.  That was too much for her and she wasn't taking it and relapsed frequently into drinking.  As a result, I got Dr Chick involved, and then a local gastroenterologist, and then started essentially forcing my wife to take small doses regularly until she stopped drinking within a few days.  I took time off work to oversee this regime.  Her condition at that point was so bad that she had relapsed into daily drinking of about 1.5 litres of vodka a day.  She was so drunk she was like a zombie and I had to put the pills in her mouth.  It was impossible if she was out with the count, difficult if she was awake but very drunk and more difficult as she sobered up because she resisted my giving her pills every few hours.  When she did stop drinking completely, on the weekend, I couldn't get her to take any baclofen at all, because she hadn't been dealing with the doctors, I had, and she did not realize she was supposed to take small divided doses throughout the day. She'd been too "out of it" to understand what was going on.  By the Monday, she was in a terrible state of mind because by the she was withdrawing from baclofen, as well as alcohol and she went into a total meltdown, the end result of which is that I had to have her taken off to hospital in an ambulance.  There's more, I've skipped over about a week of horrors.  So, there I was in a desperate situation, facing my marriage ending and with no idea of what was ahead.  I remember being in our bedroom and my wife being in a rage.  My only thought was to phone Phil Thomas, who is a former doctor and alcoholic who runs his own baclofen rehab business.  I phoned on my mobile and handed it to my wife.  She at least agreed to speak to him.  After a few minutes she calmed down and then she started to laugh and joke with him.  That initially calmed the situation down and, after the advice and support she got from Phil, she started taking baclofen on her own, without my forcing her.  That was the first time she'd really taken the treatment seriously.  She'd been on the drug for over a year but she constantly used "side effects" as a reason for not taking it, and constantly relapsed.  The relapses would then make her say "see, it doesn't work".  It was a viscous circle. Because of this incident, the social services sent a social worker to supervise us. They probably thought they could get the evidence they needed to split us up by having someone in our house and confirming that my wife was a full-on alcoholic.  The social worker came once a week for a period of three months for a few hours at a time, to our house, to watch my wife.  Instead of finding a falling down drunk, incapable of caring for her family, she found my wife was not drinking at all and was able to discuss parenting.  They became good friends.  After three months, the social worker wrote to us saying she was going to stop visiting because there were no problems and the social services had no further interest in us.   However, the policy of social services is not to just give up.  Instead, while the social worker was visiting us, the lawyers who oversee child protection filed an application with the court, called a "Childrens Panel",  to have our parental rights as parents taken away. It took several months before we received a hearing date.  The day of the hearing it was raining very heavily and we parked at the far end of the car park, up a bit of a hill.  As we walked through the car park, my wife slipped in the rain and went down very heavily.  She grabbed hold of me and I went down too, landing on her leg.  The result was that she fractured her ankle.  She had to have a plate inserted and was in a wheelchair for six months so at that point she actaully was incapable of looking after out son. Needless to say, the lawyers for the social services would have said her fall was due to alcohol.  I defended the case against us and filed a court application to stop the whole procedure.   That hearing was adjourned by a judge who was annoyed that I should have the impudence to try to delay a child hearing.  After the hearing I spoke to the lawyer for  the social services and realized she hadn't even seen the letter from the social services.   I realized then that she had no case so I decided to just let the process come to a final hearing.  As we left the court I turned to her and said "you'll never get an order against us" and turned away and walked off.  What was most disturbing about this particular hearing, with that lawyer, is that she had been at the hearing when my wife broke her ankle and when we spoke, at the time, she knew about baclofen.  In fact, her own mother was taking it for MS.  She'd read all my submissions about baclofen treatment as well. She just had no interest in it or in whether anything I was saying was true. I decided not to pursue the court hearing and let the case go forward  to a final hearing, where the Chidrens Panel was being asked to take away my and my wife's rights as parents.  When I got to the final hearing, in front of a the panel of three people, the same lawyer attended and asked the social worker who attended to give evidence what she felt should happen.  I knew what was coming. The social worker said that she had no concerns about my wife, because she was receiving treatment under supervision of her doctor, on baclofen, and as far as they were concerned, her treatment was working, and she was a fit to look after our son.  She said they had nothing they could offer in addition to that, nor could they point to anything which had been detrimental to our son.  In other words, they had no role to play in supervising us and could not criticize my wife as a parent since they had been to our house every week for three months and my wife was not drinking at all and was a devoted mother.  What this meant was that they had no evidence at all.  At that point, the lawyer started trying to persuade the Panel to keep us under a supervision order, which we had lived under for about 9 years or so, purely on the basis that it was "too soon" to leave us alone.  One of the Panel said she agreed with the lawyer and, almost mockingly towards me, said something to the effect that "we don't usually let alcoholics off a supervision order this soon".  In other words, she had no interest in the evidence and if my wife was an "alcoholic" that was good enough for her.  The other two members of the Panel then proceeded to throw out the case, since there was no evidence in front of them to make any order.  The lawyer was left sputtering. One Panel member said she had been there on the previous occasion when my wife broke her leg.   Maybe she realized that the social services had caused my wife to fall in a slippery, rainy car park just to go to a hearing which should never have taken place, and made our lives massively worse. Had we not discovered baclofen, had it not worked, had it not been prescribed by a pre-eminent doctor and had  it not been supervised by two local doctors, a GP and a gastroenterologist at the local hospital to the court,  there's no chance we would have won that hearing.  If we had lost, we would have lost parental rights to our son. If we had decided to leave the country, which we later did, we could not have taken our son and if we did so without permission, we would have had an arrest warrant issued.  That's how serious this was to us.  Without baclofen nothing we have done have would have been possible.  We're now living in a beautiful house, on the Mediterranean, and my wife's two daughters, who were taken away from her when they were aged 12 and 8, are now living here too with their partners and our grandchildren.              
    • soulfine99
      Hello, hope everyone is doing well. Newbie here - family member perspective. Advocating for my loved one as am his primary agent. Current doctor is indicating that you cannot mix Gabapentin and Baclofen -- he has to choose to be on one or the other. Another psychiatrist indicates that they indeed can be used in combo effectively? This is for a person who has been on Gabapentin and Campral (has previouslytried Naltrexone), and continues to suffer greatly despite  therapy etc. Any advice overall and/or on a regimen/dosages that worked for you? Already has cirrhosis so that's a factor too. Thank you so much in advance for sharing your experiences. 
    • MJM
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