Episodic ataxia

[Tottenham0102]

Hi I have episodic ataxia type 2 and I was seeing if anyone else suffered with it and if you do if you had any tips for me to help deal with it?

[BlanketTime1]

my neuro diagnosed me with ataxia and left it at that *sigh. i don't know which type i have, but i do know it comes and goes. it worsens in hot months. sorry i can't help more.

[Tottenham0102 in reply to BlanketTime1]

No worries thanks anyway

[aburt449]

I am diagnosed with episodic ataxia but dunno which type. For over a year now I’m having reflexology every 3/4 weeks and it works really good for me. Tbh without it I wouldn’t be able to control my balance at all. I think it’s a worth try. Hope that’s helps.

[Arlo20 in reply to aburt449]

Hi where could i find out more about reflexology,i live in sunny suffolk thanks in advance.

[aburt449 in reply to Arlo20]

Sorry for late reply 🤦🏻‍♀️I’m sure u can find locally as I did … try to look online for starters? Or ask gp’ … hoe that’s helps

[Pacitto]

Hi there I have episodic ataxia type 2 what can I help you with? I am under Sheffield.I am on acetazolamide to help with tremors, more control of the severity of the episodes.

Please let me know if I can help .

[Tottenham0102 in reply to Pacitto]

Do you find you've had to cut certain things out of your diet otherwise you feel worse?

[littlelegs914]

Hi .👊its not so episodic anymore its more permanent now.but i take it as it comes,ive had this all my life so its no biggie to me anymore. What ever you want to know i will try to help this does not stop me doing what i want to do. Im at Manchester seeing erasure this weekend with my family.standing.

[Tottenham0102 in reply to littlelegs914]

Hi thanks for your reply. How are you able to carry on doing what you like? I struggle in crowds since I've been diagnosed. I really want to enjoy my life but I struggle with certain things because I go dizzy

[EireAtaxic in reply to Tottenham0102]

I struggle in crowds because of noise. It will be my sons 5th birthday on Saturday. I have the ear plugs ready.

[littlelegs914]

Gary my husband has been by my side for the last 30 years hes my crutch if i need one. If im dizzy then im dizzy it passes , i dont take anything for ataxia or the hemiphlegic migraine i have because side affects from tablets. I have taken in the past affect me. I have 4 grown kids 2 suffer 2 dont . I laugh, cry,pull myself up and deal with it because i have to. No one is responsible for my life only me .if i can do it today i will keep doing it everyday until i can.ive been accused of being half cut taking my kids to school, followed by security 💂 in shops but ive accepted i cant change anything or people’s opinions so i speak my mind and carry on,if i let this controll me it will.

[SueMillman Partner Ataxia UK]

There are lots more comments about EA2 in this thread healthunlocked.com/ataxia-u....

[BlanketTime1 in reply to SueMillman]

thx!

[Ginger1]

Hi Tottenham 0102. I've had Cerebellar Ataxia all my life - I was born with it but they don't know which rogue gene is the problem. Anyway I was always falling & had terrible balance but didn't know til I was in my 30s. I'm on Gabapentin prescribed by neurologist. This is mainly for pain management. I take Coq10, vitamin d3+ b12 alongside other vitamins. Do you know Stephen Hawking took lots of supplements (about 40 I think) - this is a bit much because there are interactions - he survived a lot of years though - yes he was extremely intelligent + had carers but he survived under very difficult circumstances for many years - so perhaps there's something in it?! I personally think they've helped me over the years. Look into what's best for you + take advice. The other thing is exercise within your capabilities. Listen to your body + don't overdo it cause you'll suffer! Be safe at all times though - you don't want owt else to contend with 😜. Hope these tips help.

Stay safe and as well as you can.