Itchy skin and SCA 6

[Mneutz]

Hi ataxia Friends

I wanted to know if anyone experiences itchy skin? Recently it feels like a little pin prick that makes me itchy. It happens everywhere, arms, legs hands, face, head.

What do you do that helps it?

Thanks Tina

[Hidden]

Hi Tina

I have inherited SCA6 and I have the same problem but mainly on my back arms and chest, no visible marks just a pin prick feeling then really itchy but only for a few minutes.

It only started about 3 or 4 weeks ago so not looked into it too much. It’s always difficult to know what part of SCA6 and what is some other medical problem, think I just blame everything on SCA6 Lol.

Take Care my friend.

[Mneutz in reply to Hidden]

Thank you. It doesn’t happen every day. I’m going to write down when it happens again and see if it’s food related.

Take care too

[ninotchka in reply to Hidden]

I have itchy and/or overly sensitive skin all the time! I believe it has to do with the central nervous system which ataxia disrupts. I have "idiopathic" cerebellar atrophy late onset. I also have problems with heat/cold awareness.

[pinjem in reply to ninotchka]

I have some of those too, with cerebellar ataxia. My 'burning feet', aching legs and pain in my legs at bedtime and some evenings was stopped with gabapentin. That made me dizzy (ha ha!) so I have something else now. the relief is great, I had no idea just how uncomfortable my skin was-no more uncomfortable skin, I take just before bed and then sleep well which means I function better, much better. Worth asking your specialist if they can give you something,

[ninotchka in reply to pinjem]

I am afraid of drugs in general. I have heard there can be side effects with gabapentin. Also my nervous system disruption doesn't seem prevalent with others.

[pinjem in reply to ninotchka]

It is worth trying. Sleeping well has improved the quality of my life hugely. Therefore I am much happier, calmer, able to do more. A bad sleep/infection, doing too much, it all returns. The benefit to me is huge, ATM. If it doesn't agree with you, there are other drugs. I only take mine shortly before going to bed. I also didn't always know when I was cold.

[ninotchka in reply to pinjem]

Dear pinjem,

Thank you for your reply. I just went onto Wikipedia to look up Gabapentin. The side effects lists include many of the problems I already have. It even stated "ataxia" as one of them! so now I am truly afraid to take it. I do keep extremely well...too well, in fact as I dearly love to sleep. I don't really have paining general. Just soimnetimes random stabbing pain in various areas/nerves. Also, I am quite strong and healthy otherwise and never get sick. I then emailed my neurologist with a photo of my red and swollen left foot and asked her for ideas. So far over the years, she has not been much help, because she is not all that familiar with ataxia. The search continues!

[Mneutz in reply to ninotchka]

Hi Ninochtka I am not a fan of Gabapentin either. I drink 1-2 ounces of a Flora Sleep Tea. Helps a lot. Good Luck 😴😴😴

florahealth.com/us/products...

[ninotchka in reply to Mneutz]

Thank you! I have issues all day but not in bed when I sleep soundly. Go figure.

[pinjem in reply to ninotchka]

It did not suit me either, I was offered another drug by specialist at Sheffield, UK that works beautifully. I cannot make any other suggestions, maybe try the tea suggested? A wrapped ice block on my feet at night helped me too for some of the feet burning feeling.

[ninotchka in reply to pinjem]

Thanks... can you share the name of the drug offered? I do a lot of research but I haven't come across anything viable yet. If you don't want to share publicly, I think there is a private reply mechanism (never used it).