Question for Adam - Dr Halmagyi

Hi Adam

I was hoping I could get your opinion on something.

I recently posted a message about my exprience with ‘dizziness’. I have had chronic ‘dizziness’ since August 2005.

It involves daily rocking, swaying, horizon bobbing up and down, general feeling of my ‘head just not feeling right’, even when I’m sitting down. The symtpoms quite quickly then progressed to my legs feeling like they were rubber being pulled down into the ground; the lower half of my body feeling like it was moving in another direction to my top half. I then got the strangest symptom of all of my left left feeling like it is detached from my torso when walking.

I went to see Dr Halmagyi in August 2006 and after doing all the tests he said that I had Mal de Debarquement syndrome. He said that all these odd symptoms are consistenet with Mal de Debarquement syndrome.

I have since moved to the UK and have become worried about my symptoms again, not believing it’s mal de debarquement. So I went to a neuro here who told me I may be suffering with a vestibular disorder as a result of migraine.

I think I’m still searching for answers because Mal de Dabrquement syndrome sounds like such a rare and weird disorder and I just can’t believe it is what I have. Also, Dr Halmagyi prescribed Stugeron tabs and that didn’t work so I find myself momre disbelieving of the diagnosis as time goes on…

From what you were saying about Dr Halmagyi however, he sounds like he’s top of his field. Should I just start believing what his diagnosis?

I’m so confused…I just want to feel better, as I’m sure everybody on this forum does.

Thanks for your help.

Cat

Hi Cat

Dr Halmagyi is indeed at the top of the field. He has published quite a lot of papers relating to neurotology. You can see abstracts for them here ncbi.nlm.nih.gov/sites/entre … +Fields%5D

I don’t know him at all personally, but I have seen him myself and many others here have also seen him. My understanding is that he is quite rigorous when it comes to a diagnosis, and tries to match symptoms to a well defined disorder. When I spoke to him he was particularly interested in the fact that I had recurrent true vertigo episodes - as with these he was able to come to a diagnosis of migraine. He seemed less interested in the chronic dizziness, but one of his nurses said to me “we know you’re dizzy all the time, but we see this all the time, and noone really knows what it is for sure yet”. This was in 2002, and although its now 2007 there is still no useful diagnostic criteria for migrainous vertigo, particularly when it is the chronic form. I can only speculate that perhaps you fit better into the Mal de Debarquement diagnosis for some reason, although as others have mentioned MDDS is considered by many to be a migraine syndrome. Others believe it to be a more general motion/visual processing issue, but either way, that is a fairly apt description of what occurs in migraine - our response to various inputs appears to be defective.

I would suggest you could perhaps send him an e-mail. I imagine he would treat this the same as migraine, but this is just speculation. So he may suggest another migraine preventative (Cinnarizine [sturgeron] is a migraine preventative albeit not a very effective one).

My personal view is that you have nothing to lose by going ahead and treating it as if it were migraine, trying the diet, the natural preventatives, and the prescription drug treatments - and a lot to gain. For every doctor that will not abandon the approach of only diagnosing well defined disorders, you will find others who are different in their approach and will go on their own clinical suspicion and previous experience and suggest migraine treatment.

We still haven’t found what causes this but Baloh’s team is certainly racing ahead and I think they will have answers for all of us in the not too distant future. The recent discovery of a defective progesterone receptor gene is a huge step forward.

Adam

Hi Adam

Thank you very much for your response.

You’re completely right - I don’t have anything to lose by continuing with the migraine treatment in addition to changes in diet etc.

Hopefully I will start to see some results…!

Thanks again,

Cat