SCA6 Tremors in hands

[SharonPS]

Hello, I apologize if this has been asked before but I have not found anything in previous posts that apply to me.

The tremor in my hands I believe is Intention tremor, also known as cerebellar tremor and it has been getting worse. I cannot write much; it takes all my effort to sign documents and my signature is almost unreadable.

Does anyone know of an effective medication?

[jules51]

My partner has SCA5 he doesn't have tremors but can sometimes kind of I can only describe it as a jump like movement in his hands and arms like if someone burns themselves they jump back does that make sense? He can drop things so can no longer cook and has to have drinks in a cup with a lid on so he doesn't get burnt.

I'm trying to find someone else with SCA5 to see what their going through.

[simon111]

Hi my 13 year old son has Friedrich 's ataxia,and had the tremors in his hands. I am on a parent support group and I found out about Thiamine B1.I started him on it and within a few weeks his writing etc improved

With B1 you have to take a high dose he's on 1200mg a day..

I will later on try to send some links so you can read up on it

I would definitely recommend it as it helped my son immensely

[Litty]

Just starting - on and off when stressed (worse). So annoying.

I try to practise writing but my signature has always been hard to do.

I do not think any meds. Hoping turmeric I try to remember to take will help x

Oh have SCA1

[Rankin63]

I have difficulty signing my name but found Nationwide B S very helpful. They produced a stamp with my signature when I told them of my illness. Mina

[wobblybee in reply to Rankin63]

🙂 My Uncle had this arranged at his Building Society too🙂xB

[FFNick]

My hand writing is illegible to me. Signature worse. SCA1. Limbs also jump, have done for years. Physio said twitch was brain checking limb still there.

[simon111]

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Original Communication

Journal of Neurology

November 2016, Volume 263, Issue 11, pp 2170-2178

First online: 03 August 2016

Long-term treatment with thiamine as possible medical therapy for Friedreich ataxia

Antonio Costantini, Tiziana Laureti, Maria Immacolata Pala,Marco Colangeli, Simona Cavalieri, Elisa Pozzi,Alfredo Brusco, Sandro Salvarani, Carlo Serrati and 1 more

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Abstract

Thiamine (vitamin B1) is a cofactor of fundamental enzymes of cell energetic metabolism; its deficiency causes disorders affecting both the peripheral and central nervous system. Previous studies reported low thiamine levels in cerebrospinal fluid and pyruvate dehydrogenase dysfunction in Friedreich ataxia (FRDA). We investigated the effect of long-term treatment with thiamine in FRDA, evaluating changes in neurological symptoms, echocardiographic parameters, and plasma FXN mRNA levels. Thirty-four consecutive FRDA patients have been continuously treated with intramuscular thiamine 100 mg twice a week and have been assessed with the Scale for the Assessment and Rating of Ataxia (SARA) at baseline, after 1 month, and then every 3 months during treatment. Thiamine administration ranged from 80 to 930 days and was effective in improving total SARA scores from 26.6 ± 7.7 to 21.5 ± 6.2 (p < 0.02). Moreover, deep tendon reflexes reappeared in 57 % of patients with areflexia at baseline, and swallowing improved in 63 % of dysphagic patients. Clinical improvement was stable in all patients, who did not show worsening even after 2 years of treatment. In a subgroup of 13 patients who performed echocardiogram before and during treatment, interventricular septum thickness reduced significantly (p < 0.02). Frataxin mRNA blood levels were modestly increased in one-half of treated patients. We suppose that a focal thiamine deficiency may contribute to a selective neuronal damage in the areas involved in FRDA. Further studies are mandatory to evaluate thiamine role onFXN regulation, to exclude placebo effect, to verify our clinical results, and to confirm restorative and neuroprotective action of thiamine in FRDA.

KeywordsThiamine Spinocerebellar ataxia Triplet expansion diseases Friedreich ataxia

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[simon111]

Sorry not very good at copying and pasting

Check it out online

[HarryB Administrator]

Dear SharonPS

There are a number of treatments that can be effective in treating tremor but it is impossible to tell if a particular medication will be helpful for one individual. What is helpful in one person may not be helpful in another. My advice would be to speak about different treatment options with your neurologist. You could direct them to the document 'Management of the ataxias' which has a dedicated section on 'Tremor'. I have included the link to the full document below.

ataxia.org.uk/Handlers/Down...

The following link allows you to search the section for medical interventions of particular symptoms of the ataxia.

ataxia.org.uk/news/symptoma...

Best wishes

Harriet

[wobblybee in reply to HarryB]

🙂 It was especially interesting to read about Acetazolamide. My Neurologist suggested I try it. I wasn't aware of needing to stay hydrated, urinary problems have plagued me in the past😏 Unfortunately one of the side effects (pins &needles) was so excessive, I'm unable to take the recommended dose. But, it was definitely worth trying the medication🙂xB

[KennyH]

Some interesting replies.

I have cerebellar ataxia (cause unknown at present). I have intention tremor which is quite bad. My writing is awful, looks like a spider has trod in ink and crawled across the page and you wouldn't want me to carry your drink.

I asked my neurologist if there w as any medication I could take for the tremor and he said no, nothing at all.

[SharonPS]

I have been put on Beta Blockers by my GP after a visit to him on Friday and will review in 28 days so we'll see if they're any good.

[KennyH in reply to SharonPS]

Sharon, I used to work with someone who was on Beta Blockers, he had parkinsons. When I mentioned it to my neurologist he said that parkinsons is a different part of the brain and they would be no good for my tremors.

Interesting that you have been prescribed them, please let us know how you get on with them, good luck.

[Veteran250 in reply to KennyH]

I'm not sure what I have but my hands have had tremors since I was a small boy, and they still do, I have balance problems, quite often fall over, and I have numerous other medical problems...... when I sign official documents, I do so with great difficulty and no two signatures are alike.... my writing is so bad I have to write in block capitals, I was never ever able to join my letters together but I thought that was just me, I have been embarrassed by it all of my life and I'm 73 now.

[winch in reply to KennyH]

KennyH I have CA and have intention tremors which make me shake badly when standing, I have difficulty with preparing meals i.e. using saucepans, using the oven etc, making drinks, carrying anything liquid. My GP prescribed me Beta Blockers. I have been on them for about 18 months, I am not sure if they help but continue to take them in case the tremor is worse if I stopped. I had a Botulinum injection for my head tremor but had a nasty reaction to it.

[bevvick1964]

My consultant suggested Pregablin xx

[SharonPS in reply to bevvick1964]

Thank you. My Doctor has put me on Propranolol and it appears to have taken the edge of the tremors in my hands.