Occasional tremors - experience and "treatment" would be highly appreciated

[thenwg]

Hello.

I'm 26, I was diagnosed SCA14 when I was 16. My disease has evolved over the years and my symptoms get worse.

Some years ago I experienced tremors in my whole body, they were annoying and made me even more uncomfortable going out and doing everyday stuff. I can remember they lasted for a week or so, they were only active at resting, specially standing still and doing work in the kitchen etc, they were also active while sitting. But when I layed down they stop.

The time passed on and I had them again for a short period. Now I experience tremors more frequent, more intense they even make my neck hurt and also last for a longer period.

Some days ago they came back, gradually worsening day by day. Now I'm getting afraid they are coming to stay.

Have any of you fellow people had similar experience? is there any treatment that is effective? I seriously feel like I cant live with such intense tremors, last time I had them I was sent to a neurologist 3 month later when my tremor dissapered and they couldn't do anything about them.

Edit: no reports exist that anyone related to my family with the same disease reported similar tremors. Which makes me think and hope they can be caused by anxiety or stress, any input on this thought would be highly apperciated as well

[rankin1st]

Hi not sure if your tremors or muscle spasms but found this on NHS website on help with ataxia might be useful also someone a few posts ago said they had been prescribed Parkinson's medication by their Neurologist no idea if it's helpful but worth asking your health professionals.

Muscle problems

If you're experiencing muscle spasms, cramps and stiffness, muscle relaxant medication such as baclofen or tizanidine may be used to control these symptoms.

If these aren't effective, an injection of botulinum toxin (Botox) may be given. This works by blocking the signals from your brain to the affected muscles. The effects of the injection will usually last for up to three months.

All the best

[thenwg]

Thank you very much.

Those are tremors, the are getting pretty intense throughout the day while they are not very visible for the first hour or two after waking up.

My head and neck are most affected which make them also pretty painful.

It does not seem normal to have such tremors from ataxia from what I found out. I hope my doctor can help me

[wobblybee]

Hi 🙂 Did your Neurologist mention the possibility of Dystonia? Have a look at the following link, it might be useful 🙂xB

nhs.uk

Search 'dystonia'

[Ginger1]

Have a look at dystonia website under tremors. Might be useful?

[Ginger1]

Also turmeric works for me for cramp -it's the CURCUMIN apparently. Tonic water & bananas are also good for cramp too - it's quinine in tonic & potassium in bananas so I understand. No drugs either! Bonus!

[thenwg]

Thank you very much. It might be it, I will ask my doctor =)

[thenwg in reply to thenwg]

Hi, I searched it up on youtube and it seems similiar.

I hope to find an efficient treatment, it feels like the cup is about to spill.

Thank you for all of your inputs.

For those of you who suffer from dystonia, is it periodical? can I aswell digest that this will follow my for my entire life or will it come and go like it has until now?

[Missile]

I definitely have dystonia that comes and goes, it doesn't seem to get worse I find clonazepam helpful when it's bad. I don't have my ataxia symptoms all the time either though. My diagnosis is still unknown. Hope it's helpful. Good luck, Michelle

[thenwg in reply to Missile]

Thank you very much dear. Reading this gives me hope that I can still enjoy life. It seems like when i learn to coop my symptoms get worse.

[thenwg]

Hi.

I was prescribed relaxants which almost completely takes my shakings away.

[Ginger1]

I have cervical dystonia & thus Botox injections every 3 months. They work for me. Doesn't stop the tremors all the time but my head was twisting to the left of its own accord and now (8 years on) people wouldn't know I have a problem. Yes my head shakes sometimes but not constantly. That's why i suggested looking at the website. I realise it isn't for everyone but it helps me. I've also had a lycra vest made for tremors at my local hospital. It's like a cycling top with a zip up the front. It isn't tight either. Certainly works for my ataxia tremors. Hope you are successful.

[Ginger1]

Forgot to say. Exercise really helps me too. I circle my neck & look from side to side also. Stops it stiffening up!

[suzie44na]

Hello thenwg, I am new to this site. I have all the same symptoms as you do. I also have twitching muscles, but like you my tremors stop on lying down apart from my twitching muscles, which are visible under the skin. Stress and anxiety make mine worse also but this is not the cause. I have dystonia in my neck and used to have botox injections which help keep my neck straighter, i gave it up as it did not make me feel good, gave me flu like symptoms. I was offered Baclofen but was not sure about this, my body reacts to most tablets. Neurologists are not sure what I have wrong with me, but i did think about SCA14 myself. I find diazepam helps me the most, but i only take it now and then.

Best wishes