New Diagnosis - Any help appreciated!

Hello everyone,

I'm 25 but I've had attacks of vertigo/no co-ordination/double vision/sickness every 4 months for 5 - 10 days ever since I was a child. Until recently I could plan for them like clockwork, and they went undiagnosed by my paediatric neurologist because of this, since that particular feature is an anomaly in ataxia diagnosis. Because I could plan for them and they didn't interrupt my life too greatly, after I was discharged at 16 I never went to see another doctor and just planned my 'normal' life around them.

A year ago I started feeling achey and a 'foggy' feeling, and had my first migraine-esque symptom where I slurred my words and lost the use of my left arm for a time. My left eye is constantly blurry and I get headaches constantly, and although my attacks still come at their usual time, in-between them now I am exhausted and achey, and I've developed a persistent tremor in my left hand.

My new neurologist has diagnosed me as suffering from 'a type of episodic ataxia', which he thinks at the moment is Type 2, but not all of the features quite fit, so I'm still waiting for that to be confirmed.

Anyway, I'm posting now because since March I have been off-balance constantly - very much like having Labyrinthitis. I've had some vertigo attacks outside of this, but at the moment I'm really struggling to do anything day-to-day because of this constant feeling of disequilibrium. My neurologist thinks the vestibular nerves have been damaged by the ataxia/migraines and that's why I'm constantly dizzy, but I'm really struggling to see a light at the end of the tunnel if I can't shake this dizziness. It just came out of no-where one day 7 months ago and hasn't left me since.

If any of you experience this symptom, or have any tips to improve it or cope with it day-to-day, I'd be incredibly grateful. Just before it started I'd been working two jobs and had finally finished saving up to spend 6 months travelling alone through India, and now I can barely walk down the road without being terrified that an attack will happen and the dizziness will leave me unable to make it home on my own without help.

I'm sure you all have had similar experiences of the early diagnosis, but if you have any help to give I'd really appreciate it! It feels very much like I'm on my own at the moment.

Thank you x

4 Replies

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  • There is a blood test that can check for 39 different types of ataxia now request this to be done. I'm type 1 ea and I don't follow what they thought the ' norm' was. Good luck

  • Thank you! I'll see if I can push for the blood test :)

  • Hi Little_Laura I am 51 and just recently diagnosed with EA2 with progressive atrophy. Fourteen years ago I became symptomatic but it was only diagnosed last year. I saw Dr Guinti in London last week who confirmed my diagnosis. I tried Acetezalomide but had bad side effects. She has just started me on Tegretol to see if that helps. GP has also give. Me Scopolomine tablets for travelling as that has become impossible. Get your GP to refer you to Dr Guinti and she will put you on 100,000 genome project. Do you have any family history or hemiplegic migraine in your family? x

  • Hello! Thanks for your reply - and sorry about the diagnosis, although like me, I imagine it's a relief to at least have a label after so long unconfirmed?! I'll definitely see about that referral, thank you.

    No history of hemiplegic migraine in my family, but my grandad suffered from vertigo attacks a lot when he was a child, which oddly seemed to lessen as he got older - although I'm only just learning from my grandma now (he died when I was 10, unfortunately) that he did suffer from low energy and headaches as well, and was often very 'clumsy', so I think I can assume he had something similar to me in some ways. What about you? Is there a history in your family? X

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