Hi my name is Debbie

I haven't been Diagnosed with Acquired Ataxia I've had 2 strokes and a TIA my GP arranged for me to see an ENT specialist which i did and he said that my problems are caused by the Stroke/TIA not vertigo I am also waiting to see another specialist that specialises with Stroke/ TIA Damage to the Brain.

After reading different articles on this website it sounds exactly like the symptoms im getting i.e Dizziness, Loss of Balance ,Memory problems ,Vision problems and poor coordination.

My legs and body sometimes feel heavy and i find it difficult to turn over in bed.

The only time the dizziness stops is either when im sat down for a while or i lay down.

I have been trying to find some information that i could read to try and make sense of my symptoms I don't know if i have Ataxia or not but this is the first website that Doesn't mention Vertigo because i know i Dont have Vertigo.

Thank you so much in advance for having some where to find out more information.

22 Replies

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  • You sound so much like me. I've had several strokes and mini (TIA) strokes. I kept going to the doctor saying I couldn't walk down the road in a straight line and kept veering to the right side. No response so I looked up 'balance' and 'coordination' and diagnosed myself! Then I went back and told the doc what I had found out. From there I've seen a neurologist, had my blood checked and doc has set me up for neurophysiotherapy.

  • Hi Springlove

    My GP Has been really good regarding Stoke/TIA I must admit but as for the Dizziness etc its been a different story, maybe I just didn't explain myself well enough I don't know ?

    For many years the Dizziness hasn't caused to many problems I was taking Betahistine and they worked great as long as I didn't forget to take them on time but a few weeks ago it got a whole lot worse, the tablets stopped working so I went back to see the GP, He said to try stopping different Tablets to see if it helped but it didn't .

    I haven't been back since it got worse but now im thinking maybe i should as things are starting to get worse again with balance becoming more unsteady even when im sat down.

    I started searching the Internet as you did to try and find some information on balance etc but until yesterday could only find out about Vertigo which was very frustrating because I know it isn't vertigo.

    I am really looking forward to seeing the specialist and hoping that I will be able to get the answers to my questions at last.

  • Hi my name is Jim I have got cerebellum ataxia

  • Hi Jim its great to finally be able to read about symptoms other than vertigo Thank you for your reply.

  • hi i have aquired ataxia from a massive stroke 4 yrs ago, i am now under the ataxia clinic in sheffield, i do not get dizziness but cannot walk as major balance issues as my bleed was in the balance area of the brain stem, i have major co-ordinatio problems cannot write no longr struggle to read and when i stand upit looks like i am dancing as my hole body gose and shakes, a have major tremors from head to toe which can be constant at times and is very frustrating.hope you get sorted.

  • Hi I have been extremely lucky with the after effects of the stroke /Tia the only problems i had where double vision and some weakness the double vision was corrected last year but after that i noticed my vision was still not right and that it was caused by my brain having trouble working out what my eyes saw, at least that's what the specialist told me.

    I had Dizziness then but only what i would call mild compared to how it is now with the balance problems becoming difficult and the memory problems such as forgetting what i was going to do or say if distracted , reading and writing now getting difficult so if i write some thing and it doesn't make sense its because i was distracted so sorry in advance :)

    I'm now having issues when i sit i feel as though im wobbling but im not sure if i really am or just feel as though i am ?

    Its nice to finally speak to people in the same sort of experiences so Thank you for your reply.

  • Hi Xray25

    I was interested to read that you have major tremors.  I have CA and over the last 3 or 4 years have suffered tremors which have increased considerably.   When I mentioned it to my Neurologist he just said I probably have a rogue gene!  I mentioned it to my doctor who prescribed Betablockers but they have not helped.  I know of other CA sufferers who are not affected by tremors.  Mine have got worse as time goes on and I now find it very difficult when cooking - dangerously so some times - and people stare when I am out.  Have you questioned them or know of any reason for them or treatment?

  • hi winch my head and left arm are affected by severe tremors i am not aload to cook as my left side is mt dominate side,  which is the side effected by stroke which was in the balance part of the brian stem i cannot even open an egg, when i stand it looks like i am dancing,  have only been diagnosed 12 months and only go every 6 months for check up, as far as i am aware there is not anything that can help this but your neurologist will now best, i am on betablockers for stroke reasons, but some people say amytroptaline help or gabapentin but we are all differant as is ataxia.

  • have you joined differant strokes a lot of those people have alot of dizziness and it is a great group also kicking strokes ass both really great groups where you can general chat rant or rave or just get advice then there is ataxia uk group. and i agree its great o talk to someone who understands.

  • No I didn't know about those Groups so Thank you I shall take a look.

    Until yesterday I thought all this was in my mind so im pleased to find out it isn't.

  • i know that feeling it took e 18 months to get referred to ataxia clinic i had my stroke and within 12 weeks just left it was hard did get to see stroke consultant 8 months after stroke just said you got ataxia and signed me of again no explaination of what it was,then another 8 months to see neurologist who eventually got me in the ataxia clinic been under them a year.

  • I don't think the Doctors realise the impact that ,that sort of information can have on people I know I was devastated when I was told and I didn't have a bad one.

    Its been 8 or 9 years since this all started "not sure sorry" but its been really difficult to get the information from the Doctors they just Dont realise the impact on people.

    There Rant over :)

  • the other thing off coarse is a lot of people just have not heeard of ataxia health professionals included as it is speciealised

  • True, I didn't know about it until yesterday but im so glad I do now.

  • are you getting referred to an ataxia clinic to try and help you manage it, there is not alot of stroke survivors get aquired ataxia

  • Hi , as I said yesterday I haven't been diagnosed but all the symptoms sound like Ataxia so until I see the specialist at the end of Next month I don't know ?

    I think acquired ataxia is a loose term for people that have had Brain Damage im not sure ?

    Apparently there is a lot of different names from what I have read so far I've been reading about ataxia on the NHS website , that's how I found this site.

  • go onto ataxiauk.gov that has lots of imformation on ataxia is the name used for lack of control who is your specialist a neurologist there are 4 ataxia clinics in the country that specialize in it, also look at MS  as the symptoms are similar as well

  • Thank You I shall take a look now.

    I must admit reading this information is scary but it is good to have an insight at last.

    Specialists Name is Dr Bella Lucy Richard I have tried to find out some more information on here back ground but don't know where to look ?

  • Dear Debbie, First of all, I'm, so sorry you have suffered with strokes and a TIA. I have Sporadic Cerebellar Ataxia (unknown cause, symptoms 24/7, progressive), diagnosed twelve years ago, although I had very minor symptoms starting about eight years before diagnosis. Anyway, your symptoms sound just like some of mine, except I only get minor dizziness at times. One positive thing is if you do have ataxia due to your strokes and TIA it may not be progressive, have you been told that? I wish you the best in your journey...,;o)

  • Hi February

    I have been so lucky with the minor after effects of the Stroke/TIA  sadly unlike a lot of people in that situation.

    I also am sorry to hear about your Sporadic Cerebellar Ataxia and would like to wish you well too.

    No I haven't been told it isn't progressive My GP just said that this cannot be cured with a tablet so im not really sure what he meant by that ? :( .

    I think the best outlook is a positive one  so that is  what I aiming for.

    Best wishes 

    Deb

  • Hi Again Debbie, Your GP may be referring to the fact that there's no cure for most ataxia's, just a guess. The reason why In mentioned that yours may not be progressive as I use to correspond with a woman who had aguired ataxia caused by a stroke. She told me her's wasn't progressive. Of course, she had challenges with having a stroke and was constantly working to over-come them, on top of the challenges of ataxia! Yes, kudos to you for your positive outlook, as that's half the battle! My best to you..., ;o)

  • hi febuary my ataxia was caused by stroke and mine is progressive so we are all differant

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