Just back from a really good appt with Prof Halmagyi at Royal Prince Alfred Hospital here in Sydney. It's the first time I've ever left a specialist's office feeling good about all of this garbage - like I'm finally getting somewhere. My recent BPPV attack sealed the diagnosis for me and as much as I hated every minute of it, the silver lining has been the outcome. It's like the phantom finally screwed up and I nailed him. The most interesting thing Halmagyi told me was the following:
Migraine and BPPV are highly co-morbid (ie, existing simultaneously with and usually independently of another medical condition). He said that people with migraine + BPPV are the ones sitting in his office. Those without migraine rarely show up. For them it's just a crazy trip that they may even joke about and then it just blows over like a big night out on the booze ... but add migraine to the picture and it's a living hell on earth. He even seemed to sympathise with me (GASP). He said the non-migraineurs go out of their way to feel dizzy - they pay $$$ for it. It was tongue-in-cheek but he referred to those normal people out there who drink until they fall over and enjoy themselves in the process or those who pay to be dizzy on a ride in a fair ground. But would a migraineur pay for this? Never of course because it feels like dying.
I explained the BPPV attack I had and the nystagmus etc. He put me up on his table, then threw the goggles on and started flicking my head all over the place. There was nothing unusual happening. He then said I had cured myself of the BPPV using the MEP ... almost congratulating me on a job well done! After that he asked if I wanted to see some videos of people showing hard core BPPV symptoms. Bring it on I said. I saw some serious stuff there - tortional nystagmus and the usual back and forth stuff in three different patients. One guy's eyes were moving so much it was heart-wrenching to watch. He told me that based on the style of eye movement, he could predict how badly the world was spinning for them. Before he hooked me up he said "we'll do the moves with your head and then I'll show you the eye show". Luckily for me there was no more "show".
Anyway, he really agreed with me that I am a migraineur - especially with the latest BPPV attack which sealed it. So I said how about we start with Verapamil and he agreed. Then he said if that fails we can try the dreaded Flunarizine to which I said. "an 18 day half life is a bit much no?" and he said we could use Cinnarizine instead if I wanted (a much lower half life).
He said to start on a low dose of Verapamil and titrate it up (the usual) ... that I should see results in 3 months. I so hope I can handle the stuff without any nasty SEs.
I forgot to mention the damned herpes though. Couldn't believe I forgot that (I was too immersed in his videos!) but I suspect it is just another vestibular migraine trigger anyway.
So all good and I feel good that I have a dx and that the big H agrees with what I was thinking. He even took the July paper off of me looking at the epidemiology of BPPV.
Looks like I just have to calm down my head again now, get the anti-migraine thing happening, hit the VRT in due time, and I cannot see why this won't be the correct pathway out of this 4 year maze.
So glad you are feeling good after your visit. I know I have yet to walk out of the ENT's office without feeling like it was a waste of time. HE still thinks I just think I have BPPV because I too cured it myself with the MEP and there was no eye movements when he looked at me.
And how interesting is that, with the migrain association. It explains my two recurrences, and also explains the tension my head feels associated with it. I swear some days I have a vice around the back of my head, even my skin feels tight. At this point I feel like I can control my symptoms so I am going to keep doing what I am doing. the CBT is working wonders in other parts of my life so if that helps to keep the stress down then I will do my best to avoid the chocolate and wine and keep the migrains to a minimum.
Let us know how the V works out, how does that play out with the SSRI?
Keep me posted!!!! I feel like I have just entered a new era in this now thanks to you. I had been reading about Howie etc with the MAV but never considered I could have it. I always just thought it was classic post labs BPPV, but the connection to migrain is just too strong.
Lets keep the research up (okay, you keep it up, you're so darn good at it and where do you find that stuff anyway???)
I am so glad to hear that you had a good visit with Dr. H, and that you are happy with his suggestions. I hope this treatment will work for you. You really deserve a break after suffering so much, but trying to keep high spirits all along the way.
I have a question for you. I am over my parents, and my dad's LCD screen making me feel so bad, so this will be short. My mom just had a minor stroke, but the funny coincidence is that it apperently affected her vestibular center in the brain. During the stroke she was very dizzy and off balance. They are giving her Stunarone (Cinnarizine) 3 times a day. Now (3 day after the stroke) she feels fine and has no balance problems. Would you think that the Stunarone is masking some vestibular problems? I hope that when she stops taking it she will not have any balance problem. Enough one person in the family....How would you think that stroke in the vestibular center in the brain could affect her?
Scott, again, I am so happy with your great news, and am keeping my fingers crossed that you are on the road to recovery!
Last edited by edizzyna; 07-04-2007 at 04:38 AM.
I am relieved for you, Scott. It looks like all your hard work has brought you up onto the same page, same paragraph, even words as H. who is --I've read-- the very best in the V. field! Congratulations!
So very normal to completely forget a question that you wanted to ask when in the office. so many things happening at once. Remember our malady?--- doing two, three things at once is not the forte of a BPPV sufferer right now. The other day shooting off my mouth I put the milk carton into the microwave! the subc. couldn't distinguish it from the fridge :]
Update: MEPs for the last week, the first I've ever done them. Last 2 days spin-free. Yesterday tinn. disappeared totally (wow, a quiet world, what a treat). Today, dull headache, disoriented, tinnitis back at half strength. don't have your migr. meds, so I'll go out and hit tennis balls instead. The focusing, fresh air, oxygenation and aerobic helps, bec. today the pain is not too bad. I don't really feel like doing it, though. blip blip .
Scott, Scott, Scott -- Dude!! You da man!! That's awesome. I had migraines for years (mostly hormonal) and haven't nearly as much since I went off the pill almost 3 years ago. I'm convinced that it had something to do with complicating matters for me, and stemming the migraine tide has certainly helped me to retain 100% after BPV, but now you've sealed the deal. Remember ages ago when Hbep was talking about the MAV connection with this?? Seems she was right . . .
I hope the verapimil works wonders for you. Are you going to take it with the SSRI?
I'm curious and a little confused. So Halmagyi's new diagnosis of migraine playing a role is simply because of the BPPV episode and the BPPV was actually confirmed as the MEP cleared it up? So refresh my memory, why did he not think it was migraine the first time? Is he saying he's sees a higher incidence of BPPV in migraineurs or a higher incidence of migraine in BPPVers. I'm sorry for all the questions but just trying to understand the doctors sometimes as well as what I've learned and what others have learned and experienced from all theses bizarre symptoms. In other words, I'm just trying to connect the dots.
I seem to be pulling myself out of the rut I was in the past week or two. Seems to have been triggered slightly by stressing myself out. When I felt good, I committed to a July 4th party at my house (which I really haven't had much company in 2 1/2 years). Seems my symptoms spiked after I sent out invites. Maybe coincidental, may not, but I don't care as I seem to be having a better day despite the thorn in my side (tinnitus).
Please keep me posted on the verapamil progress. From my conversations with Howie, seems about three months on the verapmil for him is when he saw progress (am I right Howie?).
Hard to say how long but I would say the longest was 3 months. I was already at 85% to 90% on Zoloft and the Verapamil just brought me to 100% ....But I would say you will see some results with 4 to 6 weeks. This is a calcium channel blocker which is traditionally used for blood pressure so 3 months seems more than eneough time
P.S. I agree with Gloria I am a little confused as well to why your doctor needed to see BPPV to give you a diagnosis of MAV . You went in very prepared with research and analysis on MAV. From what I learned from my Specialist . MAV is totally independant and central in nature. It can slow down the recovery and signals cross as this is central and the inner ear messages still need to pass thru the same pathway. Thus VN and BPPV can be impacted but I still thought MAV was totally independant. None the less your instincts were correct. Just gave you some extra stress over the 2 appointments as well as symptoms
Yes the vestibular dysfunction in MAV as central, but as we have discussed previously from articles by leaders in the field, the vasospasm caused by migraine (or some other mechanism) also affects the inner ear. MAV'ers still get ear fullness, tinnitus and even sometimes hearing loss. The high association of BPPV and MAV could not purely be by chance. If you took 50 people from the normal population, and 50 with BPPV and questioned them about migraine, if the association were simply by chance you'd expect similar figures from each group. Yet they're not - migraine is significantly more common in BPPVers.
There must be some process occuring when blood supply is reduced to the inner ear, or ion channels are dysfunctioning, that causes the otoconia to enter the semicircular canals.
As it is yet not all to clear how Halmagyi related BPPV to MAV, even as adam's post mentions some interesting points about their probable link, another thing seems clear.
Most of the long time (2 years or more) vestibular troubled patients, without a clear progressive condition like Meniere´s, MS or Autoinmune Disease, probably have some MAV condition linked to their problems.
Obviously Anxiety could have a similarly morbid long time effect, but MAV seems much more difficult to confirm, unless a clear migraine headache is there.
As it might or might not be present as a symptom generator, I'm sure that it is at least the cause of a much more longer recovery when another kind of vestibular problem is present, BPPV, VN, Labs, complicating the normal healing course of those conditions.
Having experienced MAV like symptoms before, and being a past migraine attacks sufferer(with headaches and all), it seems clear to me that, when it's present as an underlying condition, and you add up the physical and mental stress of a vestibular problem(from BPPV to VN) and it's recovery process, it will surely show up triggered by this, starting a vicious co-morbid cycle which can give long lasting trouble to any person.
I'm not sure how and if "pure" MAV alone evolves from aura headaches to vertigo and vestibular like symptoms, because in the past the only thing associated to this for me, was some fogginess prior to the headache, and light/sound sensitivity, but I'm sure thas a migraine condotion can sure act both like a vestibular trigger or symptom enhancer, complicating the normal recovery path.
And even as the "one step forward to steps back" non-linear path of recovery is common for any vestibular condition, the(as I called it) "on-off" pattern, where you can feel as a 100% one day without any specific aid(VRT, pills), and back to misery the next morning, it's a sign of a migraine condition.
Last edited by stargrave; 07-06-2007 at 05:19 AM.
A belated congratulations to you! I am so glad that you finally got some answers;what a long hard road you have travelled. You so deserve it !
Your story makes me want to fly to Australia just to visit your awesome Dr.! God, it's about time someone knows what the *%#! is going on, AND is supportive AND compassionate! You're a lucky guy.
I have theory about the herpes connection: From what I know the herpes virus is somehow connected to our nervous system and travels along our nerves. A herpes outbreak can sometimes be triggered by stress, hormones and often by certain foods. Incidentally, so can migraines. So perhaps there is a link with those common factors. Just a thought.
Anyway, I am so happy for you and hope that the Verapimil works out.
P.S. I have that tooth extraction comming up on the 19th, I believe that you answered my post about the ? about Antivan. Anyway, I'll be letting you know how that goes. Still am horrendously nervous. Yikes!
I've been letting all of this sink in for the last week and working out my best course of action. All of the recent revelations have made me rethink the entire last 4 years under a new light. Migraine certainly explains a lot of it and has been, IMO, the root cause of nearly everything since early 2004, possibly even when I was only months into this. I recently stumbled across a thread on the headache board. Over there is a group of people who have displayed "tension" type headaches (with associated neck pain) with dizziness in one of them. Of course they haven't been able to see the link with a tension headache and dizziness and I can imagine that none of the doctors they've seen do either. But as far as I'm concerned, tension headaches ARE migraine. The interesting thing is that some of them have been on Cipramil and the headaches ended once they were on it for a while. I now believe that while the SSRI killed the anxiety component (necessary for compensation and obviously bad news for migraine) I had with this initially (and which pops up with relapses) it was the 15 mg dose of this SSRI that stopped the migraine activity. At every relapse, a dose increase gradually killed it within 6 weeks.
Two weeks ago after being on 15 mg again for a number of weeks, I suddenly had a solid week of clear days. But I dropped the dose back to 2/3 thinking I was out of the woods. Not so as within 3 days it all started again and has been lousy since I dropped back. Four days ago I bumped up the dose to 15 mg again. So I'm thinking this: Cipramil has worked every time at stopping migraine activity and, since I know this works, I'm going to do it again and stay at 15 mg until things settle down. Once there, I'm going to start Verapamil and see if I can replace the SSRI with it. I could throw Verapamil at it now but I don't want any curve balls just now with the present work load I'm under. Just can't have days off.
>>>the connection to migraine is just too strong
I agree with you there. I think it is much more likely migraine than some sort of post-VN thing given your headache history. In fact, I had a small BPPV event in May 2004. I thought it was a post-VN explanation ... and have always thought this. To think I've been missing the migraine target for years just annoys me no end even though, by chance, Cipramil did kill most of it.
>>>Would you think that the Stunarone is masking some vestibular problems?
So sorry to hear about your Mom having a stroke. Cinnarizine inhibits contractions of vascular smooth muscle cells by blocking calcium channels ... whether this is used for people who have had stroke I don't know but it is also a migraine treatment. I don't think it's masking the dizziness - it sounds like it's treating it and will hopefully prevent it completely. Halmagyi mentioned this to me as a possible med. Was there dizziness pre-stroke?
>>>Last 2 days spin-free.
Same thing happened to me. According to Halmagyi, you've cured yourself. All sorted! Now we just have to prevent it happening again.
>>>Remember ages ago when Hbep was talking about the MAV connection with this?? Seems she was right.
Yup - she was!
>>>So Halmagyi's new diagnosis of migraine playing a role is simply because of the BPPV episode and the BPPV was actually confirmed as the MEP cleared it up?
When I saw Halmagyi last time I wasn't very symptomatic when I finally got in there. My history with this garbage has not been very clear cut and even Halmagyi couldn't sink his teeth into anything then. But once the BPPV showed up like this after a cracking headache and those weird products the night before, he just said "migraine and BPPV are highly co-morbid" ... then there was the paper I found and it was all quite clear.
>>>Is he saying he's sees a higher incidence of BPPV in migraineurs
Yes - migraine appears to be the strongest predictor of BPPV in idiopathic cases (above age, high blood pressure etc), not the other way around.
>>>seems about three months on the verapmil for Howie is when he saw progress
Halmagyi said the same thing to me - will take 3 months once on it. Glad you're feeling better again after a crappy July 4 ... what a bummer.
My case just wasn't clear enough the last time I went in to see him. No IHS criteria migraine to speak of nor is there a family history. That's when he wandered down the MS path. He did give me a script for migraine though - Prothiaden. He must have thought migraine was a probable cause then but after taking amitryptiline and hating it, I gave Prothiaden a miss. I'm really hoping I end up in your shoes Howie, given that you also responded to the SSRI, perhaps in due time Verapamil will take me to 100%. Are you still feeling fine minus the Zoloft?
>>>perhaps there is a link with those common factors
I seriously think the herpes sends some sort of charge through my nervous system as it emerges, which in turn cranks up the migraine mechanism. I'm totally wired at the moment and so almost anything triggers it - food, bad sleep, herpes - you name it. But I've seen that given time, as things abate, even herpes has almost no effect. I can get there again.
Star - I reckon you should hit a migraine med dude. You have all the tell-tale signs. Sinus stuff, headaches, dizziness - it's all there. Time to take that monster down.