Leg Spasms - Drugs - Massage

[Guest guest]

I seek your help for discussions with my medical team.I have SCA - probably OPCA - possibly MSA. Main problem walking (ataxia).About six weeks ago I started taking Baclofen tablets for severe and verypainful night spasms in my left leg on which I wear an AFO (brace) duringthe day. For three weeks I have been up to a dose of 3x10 mg a day which is theminimum the drug manuals and doctors consider effective.Since then there has been a marked progressive decline in my ability to walkcaused perhaps, in part, by increased fatigue,especially in the evening, but also by such things as reduced musclestrength. Even my arms feel heavier and less responsive.There's also shortness of breath, particularly when I exercise, and at nightafter I have retired.1. Has anybody else had these side-effects, and, what have you done aboutit? I take no other drugs, but do take vitamins, NAC (N Acetyl L-Cysteine)and Co-enzyme Q10. It is known Baclofen can have these side-effects, but they usuallydisappear after "several weeks". How do you define several weeks - from when you first start Baclofen orfrom the time you reach your maximum dose? Breathing problems can be caused by an overdose, but you would hardlynormally call 30 mgs an overdose!2 I still get spasms, but Baclofen has taken the edge off them, and I canlive with them now. Is there another drug that will do the same but without side-effects?The following drugs are not available here: Baclofen Gel Zanaflex Soma Propranalol Robaxin Some drugs that have been suggested are: Clonazepam epam Neurontin I have already tried Quinine Sulphate which didn't work. I get enoughwater, use heat, ointments and exercises/stretching, but it is not enough.3. I know the symptoms I have can be caused by a general deterioration ofOPCA/MSA but when I reduced the dose to 20 mg the problems diminished and the spasms return with a vengence.This would tend to indicate a link with the Baclofen. There are no indications the spasms are caused by somethingelse like an infection.4. I have considered taking 20 mg at night and 10 mg late afternoon butyou are supposed to take it in equal doses through- out the day and what would 20mg at night do to my breathing?5. With the spasms I get severe pain so I use a pain-killer - at the momentCataflam (diclofenac) which dulls the pain but may not be suitable longterm. Without a pain-killer even the reducedspasms will keep me awake or wake me up with twitch- ing of my leg and pain. Any suggestions for an alternative pain-killer?6. An apparent peculiarity with my condition is that I only get the spasms (and sometimes associated cramps) when lying down for half an hour or more. The time of day doesn't matter. The spasms come much more frequently when my leg is bent which it invariably will be sometime during my sleep. Does anyone know why this is? My neurologist doesn't know. Can this knowledge somehow be used to find a solution to the spasm problem? I have raised the head of the bed by 15 cm. It makes no difference and I don't want to stand up and sleep :)7. On a related subject I am interested in non-drug remedies for my ataxia/movement problems and pain. Two possible treatments I have heard of: A) Meir Schneider's self-healing programme. Run from San Francisco. Best known for treatment of vision problems, muscular dystrophy and multiple sclerosis. Author of a couple of books, videos and audio tapes

Website: http://www.self-healing.org I know somebody with Sca 3 who has received his treatment with some success. Basically it is a combination of exercises, massage, breathing exercises and visualization. I am communicating with Meir Schneider who has never worked with anybody with my condition but says that he is almost sure that his work can beof help. He believes the cerebrum can assume control when the lower parts of thebrain and the spinal cord do not work as well as they should. [JBF - any thoughts on this?] Has anybody tried his methods? All comments invited. The Bowen Technique also known as Bowen Therapy is simply put a type of massage used to alleviate chronic pain. It involves stimulation ofthe autonomic nervous system and is practised a fair bit in the U.K. and elsewhere.

See: http://www.thebowentechnique.com/ Any comments?Sorry about the length of this message. Thank you in advance for your help.Fred Seeker

[Guest guest]

I seek your help for discussions with my medical team.I have SCA - probably OPCA - possibly MSA. Main problem walking (ataxia).About six weeks ago I started taking Baclofen tablets for severe and verypainful night spasms in my left leg on which I wear an AFO (brace) duringthe day. For three weeks I have been up to a dose of 3x10 mg a day which is theminimum the drug manuals and doctors consider effective.Since then there has been a marked progressive decline in my ability to walkcaused perhaps, in part, by increased fatigue,especially in the evening, but also by such things as reduced musclestrength. Even my arms feel heavier and less responsive.There's also shortness of breath, particularly when I exercise, and at nightafter I have retired.1. Has anybody else had these side-effects, and, what have you done aboutit? I take no other drugs, but do take vitamins, NAC (N Acetyl L-Cysteine)and Co-enzyme Q10. It is known Baclofen can have these side-effects, but they usuallydisappear after "several weeks". How do you define several weeks - from when you first start Baclofen orfrom the time you reach your maximum dose? Breathing problems can be caused by an overdose, but you would hardlynormally call 30 mgs an overdose!2 I still get spasms, but Baclofen has taken the edge off them, and I canlive with them now. Is there another drug that will do the same but without side-effects?The following drugs are not available here: Baclofen Gel Zanaflex Soma Propranalol Robaxin Some drugs that have been suggested are: Clonazepam epam Neurontin I have already tried Quinine Sulphate which didn't work. I get enoughwater, use heat, ointments and exercises/stretching, but it is not enough.3. I know the symptoms I have can be caused by a general deterioration ofOPCA/MSA but when I reduced the dose to 20 mg the problems diminished and the spasms return with a vengence.This would tend to indicate a link with the Baclofen. There are no indications the spasms are caused by somethingelse like an infection.4. I have considered taking 20 mg at night and 10 mg late afternoon butyou are supposed to take it in equal doses through- out the day and what would 20mg at night do to my breathing?5. With the spasms I get severe pain so I use a pain-killer - at the momentCataflam (diclofenac) which dulls the pain but may not be suitable longterm. Without a pain-killer even the reducedspasms will keep me awake or wake me up with twitch- ing of my leg and pain. Any suggestions for an alternative pain-killer?6. An apparent peculiarity with my condition is that I only get the spasms (and sometimes associated cramps) when lying down for half an hour or more. The time of day doesn't matter. The spasms come much more frequently when my leg is bent which it invariably will be sometime during my sleep. Does anyone know why this is? My neurologist doesn't know. Can this knowledge somehow be used to find a solution to the spasm problem? I have raised the head of the bed by 15 cm. It makes no difference and I don't want to stand up and sleep :)7. On a related subject I am interested in non-drug remedies for my ataxia/movement problems and pain. Two possible treatments I have heard of: A) Meir Schneider's self-healing programme. Run from San Francisco. Best known for treatment of vision problems, muscular dystrophy and multiple sclerosis. Author of a couple of books, videos and audio tapes

Website: http://www.self-healing.org I know somebody with Sca 3 who has received his treatment with some success. Basically it is a combination of exercises, massage, breathing exercises and visualization. I am communicating with Meir Schneider who has never worked with anybody with my condition but says that he is almost sure that his work can beof help. He believes the cerebrum can assume control when the lower parts of thebrain and the spinal cord do not work as well as they should. [JBF - any thoughts on this?] Has anybody tried his methods? All comments invited. The Bowen Technique also known as Bowen Therapy is simply put a type of massage used to alleviate chronic pain. It involves stimulation ofthe autonomic nervous system and is practised a fair bit in the U.K. and elsewhere.

See: http://www.thebowentechnique.com/ Any comments?Sorry about the length of this message. Thank you in advance for your help.Fred Seeker