Professor Halmagyi and MdDS

I’ve posted on another board as well (you can tell I’m new)…just wondering if anyone here has had an appointment with Dr. Halmagyi at the Prince Alfred down in Sydney? I finally got an appointment to see him in July and am hoping he might have some answers to this MdDS. Hopefully, before I lose my marbles completely.

Kathryn

Hi Kathryn,

Doctor Halmagyi is my neurologist - he diagnosed migraine with vertigo about 18 months ago. He’s THE expert in Australia. Quite a few of us on this board from Sydney (and other parts of Australia) have seen him. He’s a busy busy man (as you obviously know as appt is not till July) so I’d suggest having a clear run down of your history/symptoms to take advantage of your consultation with him.

If things are really rotten for you he will probably see you “urgently”. That’s what happened for me 18 months ago - he told me to come in the next day to RPA and he’d fit me in among his other scheduled appointments - which he did. He’s a nice guy.

Good luck!
Victoria

Thanks, Victoria! I knew he was supposed to be the expert on all this.

He’s emailed me this last week, wanting faxes of all my results, including those from last year. I also told him that if he had a cancellation, I’d be on the next flight to Sydney (I live up in Queensland). I’m hoping the fact that he’s going through my papers means he’ll see me sooner.

Did he help you with your problem?

Kathryn

Hi Kathryn,

I’ve seen Halmagyi twice and as Victoria said he’s a good guy and knows his stuff. He also pinned mine down to migraine vertigo but couldn’t do much more for me than to suggest medication. Unfortunately for me I don’t do well on meds (or supplements or most foods) and so while I lead a pretty normal life, this thing is still a thorn in my side that I deal with. Vic, on the other hand, has all but eliminated her symptoms completely.

Let us know how it goes for you and what he has to say about your particular case.

All the best … Scott :slight_smile:

Thanks, Scott!

I’ve heard he’s the best. I realise MdDS is quite different from the vertigo that is discussed here, but I am hoping he’ll have a clue what to do, as opposed to the other gazillion doctors I’ve been to.

Unfortunately, my appointment isn’t till July.

I’ll stay in touch. Great discussion board!

Kathryn

I went down to Sydney from Brisbane to see him. It was worth the trip. Still there isn’t anything definitve, test wise, that says all my symptoms are caused by migraine but Dr Hamalygi was pretty certain that is what the trouble is. He suggested a med. and said to take it up with my GP. Of course GP’s have never heard of MAV but I’ve seen a neurologist in Bris. who has some clue. I’m just tossing up whether to try Topamax which he gave me a script for. I’m afraid of the fatigue and brain fog it can cause. Hope your appt. gets you a diagnosis of sorts.

I’m from Brisbane and went to see him. It took me about 4 months to get an appointment.
As he is the BEST in Australia i had the highest expectatations that he would FINALLY be the doctor that was able to help me.
My appointment was in Feb 2009 and I still haven’t made any progress.

He told me I MAY have MAV and prescribed 25mg Prothiaden and also said that anxiety is perpetuating the symptoms. That’s about it. The medication didn’t help at all so i stopped taking it. Then i went back to my specialist in Bris and am on topamax.

Hi again Team Halmagyi,

Dr Halmagyi prescribed me Prothiaden (Dothep) as well. It appears to be his med of choice, or at least first option. He had me start at 25mg, going up to 75mg over a few weeks. It did take a few weeks to see any result and it was quite gradual. Even then I’ve never been quite 100% but certainly up in the 90s. A while back my symptoms started to creep back in so he had me go up to 150mg which is the maximum dosage. Back up in the 90s again. I’m more than happy with that. Hits of Valium every now and then help too.

I did mention Topamax once (as I hear it suppresses appetite so my interest was primarily asthetic!) and he said I could sure try that if Prothiaden didn’t work out.

I guess the thing to remember is that even if he was THE BEST migraine doctor in the whole wide universe he’s not a magician and he doesn’t have the magic bullet.

I did mention this forum to him once or twice and he seemed interested. Don’t know if he’s ever had a look though. I think he would find it very interesting.

Vic

Thank you all for your input. I don’t expect miracles (well, that would be nice!). I know I have MdDS. Other things have already been ruled out.

The only thing that hasn’t been done is a CAT scan which I wouldn’t mind having, since it feels like my brain is going to jump out of my head at times.

Dr. Halmagyi appears to be the only person of note in Australia who can help with MdDS, or so I have been told. When he wrote to me, he did say there was no ‘accepted’ treatment for MdDS. I take that to mean he has a ‘different’ treatment.

Just to have a doctor talk to me about my changes of an early remission from this illness, and understand the dehabilitating effect it has on my life would be wonderful.

Thanks again for helping me out here - honest answers are the best answers.

Kathryn

Hi Kathryn,

I get that head feeling too - I describe it as feeling like my brain is expanding and my skull is shrinking. Very uncomfortable and kind of makes me want to jump out of my skin.

Will be very interesting to hear what Dr H has to say about you. Please keep us posted and good luck!

Vic

Hi Vic,

Just sent you some mail! :slight_smile:

Kathryn

Hi Vic,
Just tried sending you a PM again, but don’t know if you got it. Am I doing something wrong?!

Kathryn

Hi Kathryn,

It worked! And I’ve sent you one back so I hope that works too :slight_smile:

Vic

Hello once again,
My appointment with Dr. Halmagyi is now about a month away. I honestly thought I was making progress till recently.
I took a short plane flight to Canberra to see my new grand-daughter, and ended up with a middle ear infection. The infection has cleared, but the left ear is still blocked up, and with it, the MdDS symptoms seem worse.

Also - my doctor prescribed Dothep (25) to help me get a good night’s sleep. Now I find out they are anti-depressants?? Any opinions on either of these things would be appreciated. I’m just about at my wits end. And getting depressed, to say the least.

Kathryn

Hi Kathryn.
try a hot wash cloth on the effected ear, hold it to the ear letting the steam in the ear.
do it a few times, it might help unblock the ear.

Dothep is a good med for anxiety and sleep.
it might take a couple of weeks to kick in and help.
At least you’ll be getting a better nights sleep and that’s a bonus with any vestibular dissorder.

I find going with the flow and not fighting the rocking helps.
sorry you feel so wrecked.

jen

Hello all,

I’ve waited awhile to come back, as I wanted to make sure I had good news - and I do!
I never had to keep my appointment with Dr. Halmagyi.

After rocking for six months (MdDS), I woke up on June 27th, and it never came back. I had the lot: terrible rocking, bad tinnitus, horrible pressure in my head - you name it, I had it. The pressure in my head lasted another 10 days or so, but even that has gone.

I still have a few minor cognitive issues: supermarkets, and my speech gets a bit odd if I’m tired. But I know now I can be assured it will heal with time.

So for all those MdDS sufferers out there - there is hope! And I’m living proof. And I thank God every day. Anyone wanting to know more just contact me via this website.

Kathryn

Kathryn congratulations! Must be fantastic to feel normal again! What wouldn’t I do for that? :slight_smile:

I would advise you to travel with the help of a drug called clonazepam, it’s a benzodiasepine and it supresses the vestibular system so that you don’t (hopefully) experience mdds again. Take a small dose about 2 hours before going on a plane or whatever and then take another small dose every couple of hours if its a longer flight/journey.

This is at any rate what the leading expert Dr cha does with her patients as do many other doctors who know about mdds, or so I’m told. Please consider this advice as there are lots of people with relapses; apparently if you also have migraine you’re more prone to have relapses, so please be careful!

Good for you, Kathryn!!!

Did you do anything in particular or did the rocking just disappear?

Fingers crossed it never comes back.
Cheers, Sally

Mike and Sally…

I realize relapses can occur, and I am doing all I can to avoid situations where that might happen. No long trips, certainly no boat trips, taking meds if I have to fly, and getting lots of rest. I have a few cognitive issues still, which are getting better with time (i.e. I still hate walking in a supermarket).

Sally - my symptoms got progressively better. I would get a few hours of rocking-free time each day. Then on that day in June I waited for the rocking to come back - and it never did. I had a LOT of pressure in my head for about two weeks, but it subsided, too.

I honestly believe that the majority of people with MdDS do get better, but they never bother to come back and let people know. The ones you hear from are long-timers.

I just hope even one person reads this who is down in the dumps - and they can now know it DOES go away. I attribute a lot of my wellness to my practitioner who is both a chiropractor and a kineseologist. I saw him at least twice a week, and he was never going to give up.

Kathyrn

Hello all,

Just an update on my remission from MdDS. Yes, it IS a remission, and I"m still fine. I wake up every day grateful that I’m no longer rocking and on the cruise!

I still get tired very easily, and when I do, I REST. I watch for warning signs and do what my body says to do.

For those suffering with MdDS, it DOES go away. Keep banging down the door of doctors who will help, take meds if you need to - but the best thing you can possibly do for yourself is stay positive. Don’t let anyone tell you that you’ll have this forever. I’m living proof that healing happens.

Kathryn