Re: Leg Spasms - Drugs - Massage

[Guest guest]

Fred,

I will try to answer somewhat and miy answers are in normal - yours are in

italics.

1. Has anybody else had these side-effects,

and, what have you done about

it?

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 usually

disappear after "several weeks".

How do you define several weeks - from when you first start Baclofen

or

from the time you reach your maximum dose?

Breathing problems can be

caused by an overdose, but you would hardly

normally call 30 mgs an overdose!

What does your neurologist have to say about this? Other medicines may help

- such as the ones you mention ( Clonazepam,

epam,

Neurontin), so talk it over with your neuro or family doctor. I am

not sure about how long it should take for the Baclofen to stop causing side

effects, your doctor should be your guide there. Amantadine has also helped

a few people with this type of problem, although no one knows why.

3. I know the symptoms I have

can be caused by a general deterioration of

OPCA/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 something

else like an infection.

I would also suspect infection as a cause. Have you been checked for all

types of infection?

4. I have considered taking

20 mg at night and 10 mg late afternoon but

you are supposed to take it in equal doses through-

out the day and what would 20mg at night do to my breathing?

Here again talk to your doctor.

5. With the spasms I get

severe pain so I use a pain-killer - at the moment

Cataflam (diclofenac) which dulls the pain but may

not be suitable longterm. Without a pain-killer even the reduced

spasms will keep me awake or wake me up with twitch-

ing of my leg and pain.

Any suggestions for an alternative pain-killer?

If you have OPCA or MSA, pain killers are more likely to cause side effects

that make the symptoms even worse than the side effects of Baclofen. Especially

heart problems.

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

Raising the head of the bed helps orthostatic hypotension, but if you do

not have problems with high BP while laying down, I would see no advantage

to raising it. The position of the leg can cause more cramping. My wife

HAD to have her legs bent slightly to keep from having spasms. She slept

on her back with a single pillow under both knees to alleviate the problem.

My suggestion is to experiment with pillows to try to find a comfortable

position.

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

be

of help. He

believes the cerebrum can assume control when the lower parts of the

brain 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.

Exercise, massage and breathing exercises have helped many MSA patients.

Range of motion exercise and deep breathing exercises do help somewhat,

and maintain muscle tone for a longer period. Note that you should not exercise

too much (certainly not to the point of pain) and 20 minutes three times

a day are better than one hour all at once.

The Bowen Technique

also known as Bowen Therapy is simply put a type

of massage used to alleviate chronic pain. It involves stimulation of

the autonomic nervous system

and is practised a fair bit in the U.K. and elsewhere.

See:

http://www.thebowentechnique.com/

Any comments?

Massage has helped many people, BUT it is short term relief only. Accupuncture

has also helped a few people - BUT it is also short term relief only. Has

your doctor suggested an aspirin a day for your heart? If you took it at

night, maybe it could help with your pain and heart problem - ask your doctor.

Sorry I can not help you more. You do sound like you are having typical

MSA type problems. Experimentation helped us as much as anything, keep a

log and talk it over with your doctors.

Take care, Bill Werre

[Guest guest]

Fred,

I will try to answer somewhat and miy answers are in normal - yours are in

italics.

1. Has anybody else had these side-effects,

and, what have you done about

it?

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 usually

disappear after "several weeks".

How do you define several weeks - from when you first start Baclofen

or

from the time you reach your maximum dose?

Breathing problems can be

caused by an overdose, but you would hardly

normally call 30 mgs an overdose!

What does your neurologist have to say about this? Other medicines may help

- such as the ones you mention ( Clonazepam,

epam,

Neurontin), so talk it over with your neuro or family doctor. I am

not sure about how long it should take for the Baclofen to stop causing side

effects, your doctor should be your guide there. Amantadine has also helped

a few people with this type of problem, although no one knows why.

3. I know the symptoms I have

can be caused by a general deterioration of

OPCA/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 something

else like an infection.

I would also suspect infection as a cause. Have you been checked for all

types of infection?

4. I have considered taking

20 mg at night and 10 mg late afternoon but

you are supposed to take it in equal doses through-

out the day and what would 20mg at night do to my breathing?

Here again talk to your doctor.

5. With the spasms I get

severe pain so I use a pain-killer - at the moment

Cataflam (diclofenac) which dulls the pain but may

not be suitable longterm. Without a pain-killer even the reduced

spasms will keep me awake or wake me up with twitch-

ing of my leg and pain.

Any suggestions for an alternative pain-killer?

If you have OPCA or MSA, pain killers are more likely to cause side effects

that make the symptoms even worse than the side effects of Baclofen. Especially

heart problems.

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

Raising the head of the bed helps orthostatic hypotension, but if you do

not have problems with high BP while laying down, I would see no advantage

to raising it. The position of the leg can cause more cramping. My wife

HAD to have her legs bent slightly to keep from having spasms. She slept

on her back with a single pillow under both knees to alleviate the problem.

My suggestion is to experiment with pillows to try to find a comfortable

position.

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

be

of help. He

believes the cerebrum can assume control when the lower parts of the

brain 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.

Exercise, massage and breathing exercises have helped many MSA patients.

Range of motion exercise and deep breathing exercises do help somewhat,

and maintain muscle tone for a longer period. Note that you should not exercise

too much (certainly not to the point of pain) and 20 minutes three times

a day are better than one hour all at once.

The Bowen Technique

also known as Bowen Therapy is simply put a type

of massage used to alleviate chronic pain. It involves stimulation of

the autonomic nervous system

and is practised a fair bit in the U.K. and elsewhere.

See:

http://www.thebowentechnique.com/

Any comments?

Massage has helped many people, BUT it is short term relief only. Accupuncture

has also helped a few people - BUT it is also short term relief only. Has

your doctor suggested an aspirin a day for your heart? If you took it at

night, maybe it could help with your pain and heart problem - ask your doctor.

Sorry I can not help you more. You do sound like you are having typical

MSA type problems. Experimentation helped us as much as anything, keep a

log and talk it over with your doctors.

Take care, Bill Werre