Saw my neuro today and supports trying stuff...she mentioned Buspar, Riluzole, and Chantix. I've tried Amantadine and didn't care for. Which have you found helpful for ataxia symptoms, what are pros and cons, how long for effectiveness. i would like opinions please.
Well I'll be also interested in the replies because I haven't heard of any helpful drugs specifically designed for helping those of us with any type of Ataxia symptoms ie;balance,speech,swallowing,walking etc.etc..I know UCLA are reporting interest in this matter
and research is out there..It is just a difficult disease to isolate individual medical/drug procedures that will work effectively and give some kind of RESOLVE..I also would be interested in others experience with various remedies for Ataxia..
Thank-you NM- Myra for this discussion...
I take Busparine for anxiety and depression.
As my Ataxia has reached it fifth yr my pain is intense when I try to walk I wooble and have to catch myself , I have no swallow problems but eyesight dropping items cannot really go shopping because I am afraid someone will get to close and I will lose my balance even if holding on to cart I have been taking Valium gabetidine and zanaflex all help to relax my muscle, we have just had to increase dose as my legs go stiff and I cannot hold my body up These help me relax enough to move and takes the pain away somewhat I pray you find something to help you ,
I took Chantix for about a year. It helped a tiny bit, particularly speech. I’ve recently had some cardiac issues which are most likely unrelated to the Chantix but my doctor had me stop taking it “just in case”.
I thought Chantix was terminated for use to treat ataxia because as a result of safety and interoperability,are they trying that again? Has anyone found anything that helps with the balance or nystagmas?
I have MSA as the underlying cause of my ataxia. I am on Riquip. It helps with cognition but not balance.
Actually I think there's really NOTHING out there. Only filling pockets of the mighty pharmaceuticals who can use us as guinea pigs. NO, thank you. Not in my book. They have a whole other interest.
NOT before scientists/researchers of the cerebellum find something that is proven to be REAL.
The Chantix thing has been dead and ineffective for years now. ATAXIA neurologists know that.. You need one, at a University....a regular neuro won't do...
I think some Italian dr. received research funds for CA and Riluzole. My neuro just "recommended" me to take also something that sounds like"ritoxicin" Read my comments on the discussion pages... N
I have been taking Riluzole for about 3 years. I was off of it for a few months to see if there was a big difference. I felt there was a difference and it made me feel less "off" when I was taking it. It's not a cure by any means, but it makes me feel a little more stable than without. They were doing research for certain ataxia's (I have SCA3) at Beth Isreal in Boston, MA called TMS (Transcranial Magnetic Stimulation) which seemed interesting and had some positive benefits for a friend of mine (also with SCA3) who received the full treatment, not the placebo. Gives me some hope that there is something on the horizon to help.
Actually, it’s an ataxia-focused University neurologist who had me taking Chantix. And it DID help somewhat.
Jonas Cepkauskas said:
The Chantix thing has been dead and ineffective for years now. ATAXIA neurologists know that… You need one, at a University…a regular neuro won’t do…
I don't know of any drugs that will help. I'm currently in occupational therapy and physical therapy (they focus on neuro conditions, not orthopedic). These are working GREAT! I love them. They are giving me a lot of things to work at to keep me up and walking as long as possible and not just giving me canes/walkers/wheelchairs. I have CSA2 hereditary. I can tel l you from the short time that I have been doing this I've learned a lot about my condition and how my body works and what I need to work on, If you want my opinion the OT and PT therapists know more about ataxia than the doctors.
Be careful about Chantix! It's been shown to cause crazy side effects like hallucinations, suicidal thoughts, and suicide. I would stay away from that stuff at all costs.
Buggar all helps. I take multi vitamins as I was low in some and anti depressants cos thats worse than the Ataxia.
According to my " top" neurologist we don’t have any other symptoms other than balance and coordination,
" Boll*** s" is my answer to that and anyone who says different is a big FIBBER…,
Rant over. Toodle pip.