SCA type 6

[Frank11]

I have SCA type 6. I feel so tired most of the time. If there is anyone who has or had the same, please could you tell me the way to go. Either vitamins or exercise or whatever

Thanks Frank

[Ihatespastics]

Ask your neurologist about a drug called modafinal.

[Frank11 in reply to Ihatespastics]

Thanks, will do

[Sharontower]

Hi Frank. My husband has SCA6. He spends most days lying on his bed as he’s so tired. However just returned from a cruise where he only spent the afternoons resting. His slurring worsens when he’s tired. We met a neurologist while on ship who told us to bombard him with B12 and vitamin E

[pammyann]

Hi Frank - I have SCA6 and following tests I need to have B12 injections every 3 months. As it gets closer to the next injection I begin to tire easily. It was decided that I need injections for effectiveness rather than tablets. Having the injections make me feel much more like doing things. Hope this helps. Best wishes, Pam

[cocoa in reply to pammyann]

I agree that B2 injections work and so does my neurologist.

He is unable to prescribe them to me, so I go to a private GP. I have just had a top-up today after a month gap. The difference is pronounced - I keep a diary and try to work out what suits me but will definitely not be leaving it as long next time.

[Mneutz in reply to pammyann]

Hello pammyann, what is the mg you get of Vit. B12 injections? Is it based on weight? I’m going to ask my neuro doc to try for me.

Thank you

Mneutz

[hsilverman1]

Frank,

You also probably have Episodic Ataxia also. They usually run together.

I have these conditions, and migraines on top of it.

You need a go for physical therapy, take multi vitamins.

Unfortunately the conditions are progressive. Find a Neurologist who specializes in Ataxia, or an Ataxia Center.

Good luck my friend.

Always,

Howard S from Las Vegas, Nevada USA

[claire01 in reply to hsilverman1]

Sorry Frank for jumping in on your post but hsilverman 1 I also have Eposodic Ataxia and my migraines are getting bad is there any sort of medication which would help 😊 thank you

[wobblybee in reply to claire01]

🙂Claire, I was given a trial of Flunarizine (Sibelium). In my case this was specifically to see if it helped BPPV. But I was told Flunarizine is primarily prescribed for Migraine.

[hsilverman1]

Try acetazolimide, immetrex, Fioresett.

Good luck!