I am interested to learn what prescription others take,. Personally, I am on amantadine but it dries my mouth out
iām trying Flunarizine, itās said to help with dizziness.
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Nothing relating to Atxia although my neurologist told me to take B12 even though it was in the normal range. I took it for a while and it drove my B12ās levels significantly higher than the normal range and had no beneficial effect on my Ataxia so I stopped taking it.
That said B!2 deficiency is linked to Ataxia, but not apparently in my case.
Iām am on Cyclobenzaprine for chest and abdominal muscle pain. It is a muscle relaxant. I take it twice a day. I seems to help.
Itās good to know Medication helps, how are you otherwise, managing O.K. 
Iām doing ok. I am in a power chair full time. Just waiting for the second dose
Jesse
Iāve already had my 2nd vaccine (I live in the UK), and hopefully weāll see an end to restrictions on 21 June 
Jesseš if you didnāt already know, weāre advised not to put private information (telephone number or email) on the site. Posts can be seen by anyone, and there could undesirables getting in touch, you should delete the number.
Neurologist said that nothing was available for the ataxia directly but did suggest taking a bunch of vitamins (Complex B, D & E) and coenzyme Q10. Canāt say that they have had much of an effect but I take them regardless. Really how bad can a bunch of vitamins be? : )
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I take multi vitamin and mineral every other day and B complex every day. My prescribed tablets are for high blood pressure and reflux [omeprozole]. myneurologist prescribed pregabalin for low level pain but also helps with anxiety. when I broke my wrist I had bone deensity scan and then prescribed calcium with vitamin D. I also take casteroil capsule daily.
Hello Gary, The neurologist I went to asked for me to try Acetazolamide because he feels I have EA type 2 (genetic testing results due any day now) and it has helped reduce the frequency of attacks. What has helped me the most is actually CoQ10 because it has reduced the tremors a lot. Itās always best to refer to your provider first before taking any supplements recommended by me or anyone else, just to be safe. I hope you find relief!
Hi Cirrusš Welcome.
Lots of us take CoQ10ā¦but this is the first time I recall someone saying itās helps with tremors. Interesting
Hi Gary
I take baclofen 20mg daily, plus magnesium in the morning to help reduce fatigue and also vitamin D3 as advised by my neurologist. I think Iāve got the baclofen dosage about right, as I did try uping it to 30mg for a while but it made my legs like jelly.
Martin
Thank you so much for the welcome, Beryl! It has truly been wonderful being able to hear from people who are navigating this ataxia journey day by day, with tips and stories that give us hope! With the CoQ10, I started taking it several weeks before I was even prescribed the acetazolamide and within 2 days my tremors had reduced between 70-80%. My husband and son both couldnāt believe the differenceāperhaps I was deficient in CoQ10 but all I know is that it works. We found out in the early part of taking it that when I forgot to take it, my tremors came back full forceā¦so after a few times of that happening, we realized there was definitely a strong connection, at least in my case. I am so grateful for that āside effectā that we werenāt expectingāit has made such a wonderful difference!
It really is wonderful that youāve experienced such good results from CoQ10.
I realise you might already know what type you have, but if you didnāt already knowā¦there is an ataxia that is actually CoQ10 deficientā¦and symptoms can improve when supplements are taken.
I have Oscillopsia myselfā¦and I find it very challengingā¦there is a medication Iām going to speak to my Neurologist aboutā¦
3,4-Diaminopyridine.
Downbeat nystagmus (DBN) is often seen in patients with pure cerebellar type of spinocerebellar ataxia (SCA) like spinocerebellar ataxia type 6 (SCA6). DBN frequently presents with other cerebellar symptoms such as postural imbalance or ataxia. A potassium channel blocker 3,4-diaminopyridine (3,4-DAP) has been reported to reduce DBN by increasing the excitability of Purkinje cells. The objective of this study is to determine whether 3,4-DAP has a beneficial effect on DBN along with postural imbalance and ataxic symptoms in 10 patients with SCA6 and five patients with chromosome 16q22.1-linked autosomal dominant cerebellar ataxia (16q-ADCA). The patients took 20mg of 3,4-DAP twice a day for a week. DBN was observed in seven patients with SCA6 and two with 16q-ADCA. Although 3,4-DAP significantly reduced DBN (P<0.05), other ataxic symptoms did not improved.
However, 3,4-DAP showed benefit in two patients with oscillopsia. 3,4-DAP may be effective on DBN and oscillopsia, although it was not proved to be effective on other symptoms of ataxia in SCA patients.
Copied from www.researchgate.net
Hi Beryl, That is such great info that you shared about the CoQ10 and the DBNāthank you!
I have been trying for months to get treatment for the oscillopsia with no success so far but I am still hopeful. The neurologist at OHSU thinks I have EA2, and I should be finding out my results from genetic testing any day now. I think having an official diagnosis after all this time will actually be a huge relief. I have been referred from one provider to the next since August of 2020 and because most didnāt witness ataxia at the time, they basically were saying I was fine, until I was ataxic in front of a PA-C and finally got diagnosed. He was the only one who truly listened.
So far I think the neuroās game plan is to test for the SCAs if it isnāt EA2. I heard that EA2 and SCA6 can have some overlapping features, and I do have nystagmus as well (although it isnāt as bothersome as the oscillopsia) but I can certainly tell things have been progressing in general. While the CoQ10 and Acetazolamide are helping, Iāve been getting some attacks that are quite vicious in the past few weeks, with feeling ānot quite there but still aware,ā heavy speech slurring, arms/hands lifting up just a few inches āfreezingā then dropping, very stiff neck, almost impossible to walk, and feeling like tons of electrical circuits are going off in my brain when it happens (it actually hurts), so Iām wondering if these are partial seizures? After telling my husband that they feel like an āawake seizure,ā I started researching and found a connection between these and EA2. These feel very different from the other ataxic episodes so Iāll be discussing it with the neuro next week at our appt. Iām hoping for an EEG. Overall, my husband and I are hanging in there and I can hardly wait to get the results of the genetic testing. Thank you again, Berylāplease keep me posted on how the Diaminopyridine works for you, if they agree. Iām really curious if it will work for you and it sounds promising! Hope you have a wonderful weekend!
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Beryl, have you had any improvement in the dizziness from the Flunarazine yet?
let me know how you get on because i am dizzy from time to time
I was prescribed this primarily for BPPV (Benign Paroxysmal Posterior Vertigo). I was advised to take half a 10mg tablet for 6wks at bedtime, and then start on 10mg at bedtime.
For 6wks I noticed no discernible difference to dizziness, and no feeling of disorientation etcā¦then I upped the dose to 10mgā¦
The first time I took 10mg I felt ādisorientatedā, another 50mg had made a huge difference and I didnāt like the sensationā¦so I didnāt continueā¦
But, itās possible this wonāt happen to everyone, we know that reactions to medications can be variable, and it can take a while for medications to be tolerated and achieve the desired effect.
At the same time I was coping with excessive painā¦I wanted to try CBD Oil and was concerned about mixing the twoā¦
There are a few medās that could be considered by your Neurologistā¦
Dizziness/Vertigo: Acetazolamide (Diamox), 4-aminopyridine, Baclofen, Clonazepam, Flunarizine, Gabapentin (Neurontin), Meclizine, Memantine, Ondansetron (Zofran), Scopolamine (eg. Transderm Scop Patch for motion sickness)
Copied from www.ataxia.org Medication for Ataxia Symptoms
I take chlorzoxazone three times daily and baclofen twice daily. The chlozoxazone can potentially damage the liver so I get my blood tested every 6 months to make sure my levels are fine. I find that the combination of the two prescriptions helps my balance.