doom and gloom

[auntiesally]

Is baclafen helpful to anyone? I still shake when I walk, don t have any speech problems, have sca 2 and am frightened what else will happen? I use to be able to walk a distance now I am lucky if I can walk 10 steps

[february]

Baclofen has been helpful to me, as it's a muscle relaxer. I've had ataxia 20+ years due to late/adult onset Niemann Pick C (NPC) disease. I'm not taking it currently because I had surgery recently (total knee replacement, as I had severe arthritis and a bone on bone situation in my left knee). Anyway, one side-effect I noticed was that it made me really tired (this was on-top of the tiredness I already have from ataxia). My neurologist said the tiredness should get better in time! My ataxia has progressed over the years and will continue to do so. My ataxia affects my gait/ balance, dexterity, speech, swallowing and vision. I use a cane (stick) or rollator when I leave my home and can walk further (especially with my rollator). I use my rollator in the house to prevent falls. My best to you..., ;o)

[Brommie]

Ataxia is scary, it doesn’t seem to progress and then suddenly it seems to have progressed a lot. I personally don’t get on with Baclofen but I’m not a Doctor and so I would suggest that you see your Doctor and have a chat. Write down the problems that you are having because it is really difficult to think of everything when you are on the spot. I use Youtube for exercises because I believe that you need to stay as strong as you can and try to maintain as much stamina as you can.

[benning]

I PERSONALLY DON'T LIKE TAKING MEDICATION AS I AM AFRAID OF THE SIDE EFFECTS..

[FFNick]

I take Baclofen instead of Quinine Sulphate to relax the muscles, because I get muscle cramp which on a scale of 1 -10 was 11 now with Baclofen it still occurs but is manageable. Health professionals were concerned that the Baclofen was causing more falling down. Baclofen was not. No falling down at all. I use walkers and a stair lift. Have a wet room and a ramp filling the back yard.

Baclofen has side effects. Many I now exhibit.

[sunvox]

You might find this report interesting. I take 2 g per day of thiamine and believe it is a powerful piece of my regimen. The patient in the report was given thiamine by IV, but recent research has shown that taking thiamine orally has the same result as taking it by IV.

-

Thiamine and spinocerebellar ataxia type 2

ncbi.nlm.nih.gov/pmc/articl...

The report is only of one patient, but that patient showed significant improvement in all symptoms that lasted for years, and most importantly thiamine is simply vitamin B1 which has extensive human research showing it has no ill effects even at very high doses, and furthermore B1 taken orally is just as effective in raising levels of free thiamine in the blood as when it is taken intravenously.

-

-

-

Pharmacokinetics of high-dose oral thiamine hydrochloride in healthy subjects

ncbi.nlm.nih.gov/pmc/articl...

-

"oral thiamine hydrochloride when given over a 1-week period produce blood levels that approach those obtained by intramuscular and intravenous administration"

. . .

"In a separate experiment, subjects were titrated up to 8000 mg per day over a 1-year period. The only side effects reported were nausea and indigestion in 2 subjects when they reached 7000 and 7500 mg per day."

-

This was a study in a journal that suggests best practices for Emergency Rooms:

Oral or intravenous thiamine in the emergency department - emj.bmj.com/content/21/4/501

here is a quote taken from that report:

"CLINICAL BOTTOM LINE

Oral thiamine administration is as effective as parenteral administration after five days."

Joe in NY

[Cubsfan]

I've taken 5-10mgs 4x/day for last 4 years. Just increased to 20mgs 4x/day. No side effects, much less shaking and cramps. I much prefer baclofen to gabapentin or neurontin. Always try to look on the sunny side of life

[auntiesally]

Thanks to all the replies I have stopped taking it for now