Hi all! So I saw Dr Cremer today… And he diagnosed me with MAV! After 15 years of no answers, he didn’t really even question it. He said there’s no way it’s hydrops without ringing in my ears or consistent fullness or hearing loss ( after 15 years of all this junk.) He did hearing test again, Vemp. Eng without caloric and did a head shake test with goggles that he said is instead of caloric and all was A ok. He was really quite friendly and listened to everything I had to say. The menstural cyle link was a real clue he said and he said most people don’t realise they are migrainers. I questioned that as i have only ever had one true or obvious migraine ( visual only.) With ‘annoying’ headaches inbetween. That didnt seem to confuse the diagnosis though. He thinks my flying issues are more anxiety which he said is to be expected when you are suffering from vertigo for so long. What gets me is the tests . I did them today ( on a day i am relatively symptom free) they say the results are good, yet i know i couldnt do the tests on a bad day. I assume if i had menieres, hydrops etc the tests would be ‘off’ even inbetween attacks. I have to trust the specialists knowledge! I still find it hard to believe that what I feel on a plane is anxiety based but he said the MAV may also cause some of my motion intolerance. I told him I am on sandomigran but he said it isn’t overly effective in his opinion under 3 mg a day for migraine vertigo. He also said on the required amount the weight gain isnt good. He wants me to start Topomax and he will keep in touch with my ENT here as I try it. He said it can be very effective. I am trying to not read all the scary stories as i want to try it and give myself a chance to get out of this nightmare! I still go to see dr Granot tomorrow. Guess I better start believing its MAV though!! I couldn’t ask for a better Xmas present than a diagnosis… Finally! thank you for all of your ongoing support. xx
Fantastic outcome. Glad to hear Cremer saw it immediately for what it is. You’re a textbook case if you ask me. It goes off with periods and the strong genetic link is there. Those are rock solid indicators. Onward to Granot for another treatment plan. At the end of the day it’s hard to know what will work. It’s trial and error.
First of all, congrats, you finally have a diagnosis! Cremer performed all those tests on me as well and I got a diagnosis of psycho- physiological dizziness. I disagree with Cremer about the dizziness increasing on the plane being related to anxiety only. I am sure anxiety exacerbates the symptoms but I don;t think anxiety is the only reason behind it . In fact this was one of my first symptoms that occurred when MAV hit me. I had no idea what it was. I would feel fine on the plane but as soon as I would land I would start to feel unsteady and imbalanced. It was just plain confusing to me. I believe Granot also found it weird that I would get this sense of disequilibrium after landing. But the 1-2-3 Heal your headaches book by Buccholz confirms that barometric pressure changes can increase migraine symptoms and recently my VRT specialist said the same thing.
Regarding topamax, yes its a wonder drug for many but can have a high side effect profile. Therefore Granot starts people off with the easier to tolerate drugs sandomigran, periactin etc and then moves on to topamax if his first line meds don’t work. sandomigran def. has a weight gain side effect which can be offset if you eat well. Chances are that since you have not been on sandomigran on the full dose yet and you have not been on it that long, Granot will get you to continue the sandomigran until you reach 1.50mg and make you stay on that dose to see if you feel any benefits. There is plenty of room to increase the sandomigran if you start to feel the benefits and it has been around for ages so its known to be extremely safe. If sandomigran does not work for you, Granot will get you to start the topamax I think. I say since you are already on the sandomigran, you should continue it for a couple of months and that way you won;t have any regrets later (in case the topamax does not work). You will be happy to tick off these 2 drugs and go on to the next one. Otherwise you may keep questioning yourself “what if I had continued the sandomigran, maybe it would have worked etc”. I’ve done this mistake and it feels like crap to think “oh shit, I have to start that same drug again and give it a fair trial”.
Anyway the above is just my thoughts. Let us know what Granot says tomorrow. Good luck
Sounds like a really productive appointment with Dr Cremer - good to hear! And today you’re off to Dr Granot, hope that goes well too (which I’m sure it will).
I know it’s hard getting your head around the idea that this is all caused by migraine, but, given that by your own description you have had one migraine - that makes you a migraineur. The frequency of attacks doesn’t matter. My brother had a year or so of shocking migraines early in his teens and NOTHING since (he’s now 44). That still means he’s a migraineur. In your case however, all the other symptoms you’ve listed as being chronic SCREAM migraine. Migraine, migraine, migraine!
Hopefully you’re on your way to wellness
So glad you got a diagnosis over 15years Now recovery, (or an educated attempt at it) can begin x
Thanks for sharing! Im on Topamax and although there have been some side effects along the way, but it has not been bad at all!
WHAT did granot say?
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WHAT did granot say?
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Yes! We’re all on the edge of our seats!!
Thank you! Well Granot said MAV too! He said it’s not as clear cut as they normally like as I have only had one migraine with obvious aura and I don’t get light sensitivity with my bad headaches. Although they are sometimes pounding etc. he said the cycle bit is typical of migraine and it’s more of a diagnosis of elimination.
All my ear tests are good and the symptoms haven’t changed after 15 years so migraine is most likely with recurring vertigo. Neither Cremer nor Granot thought it was hydrops so I need to let that go. Thank goodness. To be honest, Cremer got to the diagnosis quicker but Dr Granot took more time to talk to me. Both were very good. I guess I’d hoped they’d say “it is absolutely, without a doubt, migraine” but neither seemed to think it could be anything else really. So that has to be enough.
Granot said I should stay on the Sandomigrain and go up 1.5 mg (which I have) and stay there for 6 weeks before throwing it away and trying the Topamax. He also gave me a Topamax script with much slower instructions re increasing the dose than Dr Cremer. – which I will follow if need be. Granot said many people don’t gain weight on Sando if we eat well. So I’ll keep trying it! Granot also said that the motion issues on the plane could be migraine related and the tablets may offer some relief, whereas Cremer thought my flying issues must be anxiety. Overall it was MAV from both and now I need to focus on getting better Thanks again all!!! Appreciate your support so much. xx
Great to hear you’re on the right track now. Re the plane and feeling worse. This is really common for a lot of people with this crap. When I got on a plane from Toronto to LA 2 years ago, I was absolutely fine heading to the airport and had been days before. I have no fear of flying and actually almost have a private pilot’s license. BUT, as soon as that jet took off my head went mental and my heart was pounding like mad for no apparent reason. And because the MAV was creating really uncomfortable feelings in the jet, I did start to freak a little bit because I had no idea how I’d survive another 20 hours in a jet to Sydney. Long story short, I took a bucket load of valium in LA, passed out in the plane and felt great when I woke up.
hahaha Right on Scott. the Valium is like gold on the plane
Well done AG. You are now on the correct road to recovery
You will learn more as you continue to do more research and with time you will be able to find all your triggers and learn to manage this crap and maybe one day it will go away.
Excellent result Aussiegirl! So pleased you have got the same diagnosis from two of the best Mav specialists in Oz - now you can let all the other stuff go & focus on getting well again. After 15 years of searching for answers you must have had a huge weight taken off your shoulders so hope you can now relax and enjoy Christmas with family.
Dr Granot has been a huge ongoing support for me - only need to email him and he replies the same day! My GP is amazed that any specialist would provide this support. Did you mention the forum to him?
Good luck with your med trials.