anybody here living in ireland and suffering with episodic ataxia. i have just been diagnosed with episodic ataxia 2

[ringabel]

would love to hear from somebody living in ireland who could advise me on what help/treatment is available here

[HarryB Administrator]

Hi ringabel

I live in England so am afraid I don't really know about the services in Ireland. Do you live in Northern or Southern Ireland? Have you been in contact with Ataxia Ireland or Ataxia UK?

Harriet

[ringabel in reply to HarryB]

thanks for reply, i live in southern ireland, and have not been in touch with anyone, was basically diagnosed and sent home on diamox which really did not agree with me, now on trial of topomax, any advice on what to do after diagnosis would be appreciated, thanks in advance.x

[HarryB Administrator in reply to ringabel]

Hi again

Ataxia UK, the patient organisation in the UK, produces a number of publications. I have enclosed a couple of links below, the first a more general publication about ataxia and the second a publication specifically on Episodic Ataxia Type 2 (EA2). I hope you find these helpful.

ataxia.org.uk/data/files/in...

ataxia.org.uk/data/files/in...

The patient organisation covering Southern Ireland is Ataxia Ireland, formerly the Friedreich's ataxia society in Ireland or FASI. I have enclosed the link to their website below which includes details of how to contact them. I would very strongly recommend you contact them. All the people who work there are absolutely lovely and they will be sure to advise you what you could do next.

ataxia.ie/contact

I have an ataxia but it is not EA2 and and much as I would like to advise you, I would hate to give you any wrong information. A diagnosis of any of the ataxias is extremely hard and I wish you the best of luck. If you have any questions at all, please do not hesitate to ask them. I might not know the answer but I can hopefully point you towards someone who is in a better position to help.

Best Wishes

Harriet

[ringabel in reply to HarryB]

thank you so much will contact them asap. x

[february]

I'm unable to advise you as I live in the States. Although I have ataxia, I don't have EA2. Just wanted to wish you the best in finding help! ;o)

[ringabel in reply to february]

thank you.x

[Missile]

Hi there, I'm not quite sure which sort of ataxia I have yet as am awaiting my genetic testing but I know eA2's a possibility. Have you tried a trial of acetazolamide ( Diamox), meds which can help reduce attacks significantly? I don't know what's about in Ireland, but it's what I'm on at the moment and does seem to be helping.

Best wishes,

Missile

[Missile]

so sorry, just read full thread and realised that you have tried Diamox already, good luck with Topamax, sorry it's been a long day! Mx

[ringabel in reply to Missile]

ya was on diamox for 4 days only and in that 4 days i was vomiting continously and every time i stood up i had the most severe pain i ever experienced which started in my spine and felt like it went out through the top of my head, i was so weak, my gp told me to stop it. just completed 5 days of topomax and although not in pain it increased my vertigo symptoms by 100 which left me bed bound, the neuro wants me to try tegretol bul i will wait a few weeks first i think. how did you feel on diamox.?

[Missile in reply to ringabel]

started it really slowly 250mg twice daily, it changed my sense of taste and got pins and needles a lot, and felt tired, but have managed to get it up to 500mg twice daily now(took me 6 weeks) and it is reducing my episodes but not stopped them altogether, but it has really helped involuntary movements and speech slurring, but not until I was on the max dose for about 2 weeks. I still have bad days but they are less bad than they were.I am going to see my GP to get my liver function tests and full blood count done as Diamox can cause problems with these long term. I would have a rest for a bit and then try low dose tegretol. Am so sorry to hear you have had such bad reactions, I know some people can be very sensitive to these drugs. I'll keep my fingers crossed for you with the tegretol. Mxx

[ringabel in reply to Missile]

thanks for your reply, i also started on 250 mgs of diamox daily , but i suppose will give the tegretol a try in a week or so, glad diamox is doing the trick for u .x