Hello, everyone. Iāve found your forum from the Meniereās forum - been reading both to give me some sort of direction for where to go for diagnosis/treatment.
Here are some symptoms:
perpetual headache
ear pain in right side
ear fullness/pressure in right side
head fullness/pressure all over
dull hearing; feels like possible loss, with some fluctuation
difficulty concentrating and grasping info
difficulty focusing on print when reading, both with books and (even more) with computer
very short, mild and sudden episodes of dizziness/room slanting or spinning (sort of)
buzzingā in my head occasionally
sensitive scalp
perpetual feeling of impending dizziness - have to turn carefully so as not to bring actual dizziness
occasional sinus pain with no subsequent sinus illness
unrestful sleep
stiff and painful neck and upper back
tiredness
ābugged outā feeling in eyes and head when at computer screen
sensitivity to light
joint pain
And probably a few things I missed . Oh, yes! Hereās one - if I look down at steps when going up them, I feel unsteady and like Iām going to miss the step.
Anyway, Iām looking to get an appointment at the Balance Center in Fort Wayne (Boismierās).
Try a neurologist or better a neuro-otologist. Read our wikis. You sound like one of us. Half of people presenting with balance issues have some sort of migraine variant. The others have a variety of issues, many related to the ears. A neurologist can point you in the right direction, particularly one whoās dealt with migraine variant balance disorder. Also, check out the vestibular migraine page on VEDAās website.
Helen (@Onandon03), can you throw up that PDF link from the other day? Thanks.
I have a consultation scheduled with a doctor from the ENTās office for November 7. This will determine if they think I should be referred to Tom Boismierās Balance Center.
I had my appointment today with Dr. Rao at ENT Associates of Fort Wayne. Hearing in both ears was normal. No pressure behind ear drums. He had me schedule balance testing at The Balance Center, which will be tomorrow - just happened to have an opening then; otherwise woudāve been in late November or mid December. Follow up appointment is November 28.
He indicated that, in general, there are possible inner ear/balance issues related to migraine. He didnāt say that I was in that category . . . yet. If needed, heāll refer me to a neuroligist. It sounded like the only recommended treatment (from him) for balance issues was therapy (VRT, Iām assuming).
Overall, I am underimpressed with the visit. I arrived late because I had trouble finding the office within a labyrinth of hospital hallways. Then the rooms were upstairs and smallish, and I tend to be claustrophic (anyone else have this?). I felt pressured to list my symptoms quickly (which meant that my brain froze and I couldnāt think properly). The doctor interrupted several times, which made me nervous. I think he was trying to pay attention but had limited time with me. He did take the time to read the one-page list of symptoms and health timeline which Iād prepared in advance. The support staff were all friendly and competent.
I had my balance testing. I donāt know the names of the tests, but it took 2.5 hours to complete.
A technician performed the tests, and I found out that Tom Boismier was remotely monitoring the testing the entire time. He not only observes all the testing, but he reviews the results and gives recommendations to the ENT doctors who meet with the patients. I will get my results on November 28.
Before I left they gave me papers to read: a few articles by Dr. Hain, some Veda articles by those who have headaches and/or dizziness, a paper on VRT, etc. I also have a headache/head pressure diary to fill out.
If they gave you articles written by Dr. Hain, thatās a really good sign that they know what theyāre doing. It sounds like you found a good facility and I hope theyāre able to provide you with a plan of attack.
Dr. Rao spent more time with me and was more personable than during the initial ENT visit. I suspected that he truly wanted to help but had been pressed for time (initially), and the follow up visit confirmed this.
My balance test results did not show any inner ear problems, so I am being referred to a neurologist to deal with the headaches. I am awaiting a call from Dr. Raoās phone nurse to talk to me about scheduling. I have no clue who the neuro will be. Dr. R advised me to go to the neuro and focus on the headache, as many neuros donāt believe thereās a connection between headache and dizziness, and bringing up dizziness as a main focus from the start would quite possibly turn them off from wanting to help me. I appreciated his honesty. I do believe that my headaches and dizziness are related, but I am content to deal with one and see how it goes with the other. Currently both have been better for a few weeks.
I think you should tell the neurologist about both (headaches and dizziness). You could even print out this thread (or at least your first post, where you list your symptoms) so that he has that for his records. Then you can say that you want to focus on the headaches first.
You never know what the neurologist might think or what his background might be. At the first visit with my neurologist, he told me that his wife has vestibular migraine. I was relieved that he had at least heard of the condition!
Quite right! I plan to bring up both, because they are related, but I will initially lean toward headache control, until I have a better idea of where this doctor is coming from.
Yeah, depends on the Neuro. My first Neuro was turned off by it and basically said I was Neurologically fine My second Neuro wasnāt turned off by it but was more interested in getting the headaches under control first to see if it had an effect on the dizziness. And yes, so far this relationship (headache ā dizziness) seems to hold true for me. Slowly, as my headaches (or rather headpressure) go down, so does the dizziness.
Anyways, seems like you are getting good progress towards a treatment plan, nice work!
The neuro-otologist who first diagnosed me with MAV shocked me. Iād had it 12 and more years without a clue it might be Migraine variant. I donāt get headaches. At the time of diagnosis he wasnāt completely sure that was what I had but what he was completely sure of was āMigraine causes vertigoā, and he made his diagnosis based on the type of vertigo I was experiencing. He was top guy at largest teaching hospital in my area so presumably quite knowledgeable. Unfortunately for me he wouldnāt take up management of my case because migraine is outside his field of interest. Bit too prima donna like these experts for me!
From subsequent developments I can only say, as a sufferer whatever happens to be root cause, with MAV, headache/dizziness - itās all the same condition. I have no argument with that at all. Helen
Well, just to balance this discussion, there is certainly an association between migraines and vertigo (hence āMAVā) because they are often comorbid, but I donāt believe (with others) that vertigo (specifically) is caused by āmigrainesā: the fact that you can often switch vertigo (and nystagmus!) on and off by moving into and out of certain position makes me satisfied that it is not a āmini-migraineā.
The aetiology of MAV has not been determined, and itās probably fairly complex. It may even relate to issues with maintenance of homeostasis within the inner ear due to either in an internal or external influence and the impact that has on your brainās allostatic load.
True, but I think the plural form āaetiologiesā is warranted here to allow for multiple causes, including migraines AND ear trouble. And not saying migraine activity canāt effect the inner ear - if migraines effect blood supply (vasoconstriction) to different parts of the brain of course it can.
I have read quite a bit about how cabin crew suffer very similar symptoms - headache, dizziness, nausea, ear pressure and pain etc during flights (as a child I would literally scream for the last 15 mins of a flight). In most cases, on examination, these folks did not have any discoverable abnormalities in their ears or sinuses yet changes in pressure would regularly cause debilitating symptoms for them so for me it highlights how any disruption to the ears and sinus can have a dramatic effect.
Mav
. Oh, yes! Hereās one - if I look down at steps when going up them, I feel unsteady and like Iām going to miss the step.