had a terrible appointment today… very un-Swiss in so many ways (being the land of efficiency and perfect timing)
The goal today was to have a 30 min consultation with a neuro otologist followed by 1 hour gait anaylsis with the neuro again and a balance specialised physio.
I turned up promptly on time and the doctor called me in 20 mins later than expected. They then proceeded to tell me they thought I had cancelled my appointment… I was furious as I have been waiting nearly a month for this so I explained how that would definitely not be the case!
There was no chance of seeing the physio and neuro due to them having a full schedule but instead had the first consultation with the neuro oto.
Its being arranged for me to have every vestibular test known to man… which is likely to take between half a day and a day, so i may be waiting a few weeks but at least it will be thoroughly analysed.
I asked the neuro about the likelihood of my condition being migraine, having now had the same disequilibrium for 3 months, not getting better or worse. I have tried migraine diet, magnesium and vit b2 supplements without any change in symptoms, so she advised that this is unlikely to be migraine but cant be sure before the tests have been completed.
Her argument for it likely not being migraine is the lack of headaches. Its a real struggle that we are constantly having to train the doctors who are treating us… but i was not suprised…
Yes, very frustrating Rich. Your issues may or may not end up being migraines in the end, but as many of us are well aware, the lack of actual headaches is certainly not a clear deciding factor in that determination. Being thwarted by a clerical error is incredibly frustrating, but then to double that up with a doc not familiar with migraines that can produce vertigo without actual painful headaches is just maddening.
Hopefully the tests they set you up with will give you some useful information to go off of. All of the waiting just to even start trying to get better becomes interminable after a while.
So sorry for the disappointment! There is nothing more frustrating than waiting. Waiting for an appointment, waiting for a medication trial, waiting for withdrawal, or just waiting it out. Hang in there!
Sarah
Her argument for it likely not being migraine is the lack of headaches.
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Oh dear, oh dear, oh dear. How many times must we see this same thing, trotted out time and time again - it’s enough to activate my migraine mechanism and worsen the dizziness every time I read it!! :evil:
So sorry to hear about your bad appt Richy. Hang in there - you will get the answers you seek, because I can tell that that’s the type of person you are. But please, please - don’t waste time with consultants who aren’t educated - I speak from actual experience on this. Just move on, and do whatever it takes to find one that is properly educated, and go see them - else you’ll be getting misdiagnosed, and given less-than-optimal meds at best.
I, too, am sorry you had to go through all that. I have had that experience with a few Dr’s, that have “never heard of MAV” or smile at me and ask " who ever told you THAT?" Just makes me sooooo mad. Also, with friends, people, that never heard of migraine being anything but a headache. Everyone has a friend that has migraine, don’t they? Well, sometimes we have to travel to get to the best, most educated Dr’s . I had to go to Chicago to see Dr. Hain ( who is just fabulous), and I finally got an appt with Dr. Terry Fife in Phoenix for next Dec., while I am in Arizona. I also found an excellent Dr. in Orange County, Calif. Irvine, named Dr. Djillilian at the University of Calif. Irvine. He actually diagnoised me first with MAV. He put me on Verapamil first and I am still on it and it helped me hugely. So, if you have a bad Dr., then search the world for one that understands MAV. It’s worth the trouble. Good luck to you and hope all your tests come out clear. Meredith
I am also really sorry. This illness is bad enough to deal with let alone wasting our times with doctors that don’t know anything about it. But it’s good that you are getting all the tests done as MAV is a diagnosis of exclusion. And the fact that a neuro otologist would not know anything about MAV is baffling and frustrating. They are supposed to be the experts on this. They should know that a headache is just one of a migraine symptom. Therefore, migraine does not equal headache. I am one of those that don’t get headaches and therefore never even thought of my problems being migraine related. I was fortunate to have a really fantastic neurologist in Dr. Seth Kaufman who performed many tests and finally referred me to Dr Terry Fife who is an Oto neurologist and considered one of the top doctors in the world. He looked at records of all my tests, asked me a bunch of questions and without any doubt, he diagnosed me with MAV and told me it can be treated. I cried so hard as I couldn’t believe someone finally knew exactly what I was going through and told me he can treat me.
So what I’m trying to say is just because you don’t get headaches, doesn’t mean your symptoms are not migraine related. If they rule out everything by doing all the brain scans, MRIs and ear testing than there is a very good chance it’s MAV. But it’s best to see a specialist in this to be sure. Do you have problems driving or any motion intolerance? Do you have any sensitivity to light? Has any one in your family had headaches?
Again I’m sorry but the good thing is that you are getting all the right tests. It’s such a pain to wait but keep on pushing forward and never give up unil you are comfortable with your dx and get started on a treatment plan.
Do you have problems driving or any motion intolerance? Do you have any sensitivity to light? Has any one in your family had headaches?
Again I’m sorry but the good thing is that you are getting all the right tests. It’s such a pain to wait but keep on pushing forward and never give up unil you are comfortable with your dx and get started on a treatment plan.
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Hi Mavprincess,
He sounds like a great doctor
I have no motion intolerance at all, I feel better when in motion. I also don’t have sensitivity to light but I did used to suffer from the classic migraines when I was younger.
Glad to hear you are doing well, hope it continues for you
The migraines when you were younger is genrally a big tipoff to this stuff. The most common profile for MAV is a long-time migraine sufferer who just suddenly develops unexplained vertigo.
The big problem in diagnosing me was that I had NO history of migraine. It was only after careful examination of my history that we realized I had been “suffering” silent migraines for about 12-15 years without realizing it.
