I am interested to learn what prescription others take,. Personally, I am on amantadine but it dries my mouth out

:slightly_smiling_face: i’m trying Flunarizine, it’s 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 B12’s 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.

I’m am on Cyclobenzaprine for chest and abdominal muscle pain. It is a muscle relaxant. I take it twice a day. I seems to help.

:slightly_smiling_face: It’s good to know Medication helps, how are you otherwise, managing O.K. :thinking:

I’m doing ok. I am in a power chair full time. Just waiting for the second dose


:slightly_smiling_face: I’ve already had my 2nd vaccine (I live in the UK), and hopefully we’ll see an end to restrictions on 21 June :crossed_fingers:

Jesse🙂 if you didn’t already know, we’re 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. Can’t 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. It’s 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 Cirrus🙂 Welcome.
Lots of us take CoQ10…but this is the first time I recall someone saying it’s helps with tremors. Interesting :slightly_smiling_face:

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 I’ve got the baclofen dosage about right, as I did try uping it to 30mg for a while but it made my legs like jelly.

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 couldn’t believe the difference–perhaps 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 force…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 “side effect” that we weren’t expecting–it has made such a wonderful difference!

:slightly_smiling_face: It really is wonderful that you’ve experienced such good results from CoQ10.
I realise you might already know what type you have, but if you didn’t already know…there is an ataxia that is actually CoQ10 deficient…and symptoms can improve when supplements are taken.

I have Oscillopsia myself…and I find it very challenging…there is a medication I’m going to speak to my Neurologist about…

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.

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Hi Beryl, That is such great info that you shared about the CoQ10 and the DBN–thank 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 didn’t 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 neuro’s game plan is to test for the SCAs if it isn’t EA2. I heard that EA2 and SCA6 can have some overlapping features, and I do have nystagmus as well (although it isn’t as bothersome as the oscillopsia) but I can certainly tell things have been progressing in general. While the CoQ10 and Acetazolamide are helping, I’ve been getting some attacks that are quite vicious in the past few weeks, with feeling ‘not quite there but still aware,’ heavy speech slurring, arms/hands lifting up just a few inches ‘freezing’ 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 I’m wondering if these are partial seizures? After telling my husband that they feel like an “awake seizure,” I started researching and found a connection between these and EA2. These feel very different from the other ataxic episodes so I’ll be discussing it with the neuro next week at our appt. I’m 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, Beryl–please keep me posted on how the Diaminopyridine works for you, if they agree. I’m 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

:slightly_smiling_face: 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 etc…then I upped the dose to 10mg…
The first time I took 10mg I felt ‘disorientated’, another 50mg had made a huge difference and I didn’t like the sensation…so I didn’t continue…

:slightly_smiling_face: But, it’s possible this won’t 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 pain…I wanted to try CBD Oil and was concerned about mixing the two…

:slightly_smiling_face: There are a few med’s that could be considered by your Neurologist…

Dizziness/Vertigo: Acetazolamide (Diamox), 4-aminopyridine, Baclofen, Clonazepam, Flunarizine, Gabapentin (Neurontin), Meclizine, Memantine, Ondansetron (Zofran), Scopolamine (eg. Transderm Scop Patch for motion sickness)

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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.