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Tampa Bay Hearing and Balance center Appt update

so I just got home and I don’t know how to feel …I guess my mistake was expecting too much out of my first visit, here goes the details

as soon as I got there I signed in and was called in to start with the hearing loss test (that I asked for because of ear pressure even though I had one back in December) after just a few minutes, that part didn’t take long and I was told by the audiologist I have perfect hearing.
I went back to the waiting room and then was called by the nurse who took my vitals and then asked a few questions related to the dizziness, then took me to another room where I was greeted by the nurse practitioner, im sure the poor girl ended up with sore fingers with all the typing she had to do, her job was to go over all my symptoms and dates including migraines which go back to 2015, she asked about the details, how and when, what makes it worse, what helps …to be honest I was very impressed, with her questioning she helped me remember things that im sure I would have forgotten other wise, she then made me get up and did some balance testing like making me stand on one foot, walk back and forward moving my head up and down, side to side and so on, she then walked me to another room and told me dr Allen would be in shortly

after about 10 min of waiting in the room Dr Allen came in, he went over my symptoms again, accessed my MRI and VNG results and went over them with me, explained what the imaging meant and what the look for, said my brain is beautiful (LOL) and that everything seems good and normal, no tumors or blockages (which I already knew since this was ordered by neurologist a few months back) then explained that my VNG came back almost normal except for the gaze stabilization part which means problems with the central part of the brain, he said this usually happens when there are brain tumors or MS lesions but that since my mri is good it makes me harder to know what’s wrong, he said “we know there’s something wrong but there’s no actual explanation for it” (Great news sarcasm inserted) but that it helps him believe that my problem is definitely neurological and migraine related.

at this point in my head I was like ok just said the words, say vestibular migraine and at least ill know but then he went on to explain that sometimes there are viruses inside the ear and that they affect something in there and that can be the cause of the dizziness, he showed me in his diagram the little things that get affect by viruses but to be honest I forgot the name already.

so the plan is to stay on the aimovig for at least 3 months (even tho im not feeling any difference on migraine pain) before I try something else but told me to see my neurologist asap so he can make notes and know that if aimovig doesn’t help I need to try something else asap, he prescribed more valtrex for the virus theory but in a lower dosage than the other ent (on my original post I mentioned how she game 10 days of high dose valtrex) and for 6 weeks, this is when he reminded me that this will be a long process and then even tho easier said than done I need to be patient because he won’t try other medications until his patients have tried the current one for 6-8 weeks the least, he gave me a list of supplements to try (its a copy of the list from the article from dr John carey, Johns Hopkins otolaryngology) and a list of possible food triggers to avoid, he recommended to start a diary and told me he’ll see me in 6 weeks for a valtrex follow up.

so yeah, he never said the VESTIBULAR MIGRAINE words, he just talked about migraines but I figure it’s almost the same thing, ohhh and he reassured me that I don’t have menieres, he said he’s 100% sure I don’t have it and to just focus on my migraines for now.

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Thanks so much for feeling that you were able to share your medical experience with us. Much appreciated.

As vestibular conditions are generally diagnosed by symptoms/lack of symptoms, a very detailed and specific history is often key. Sounds as if you met just the right person to do it.

The ‘no actual explanation for it’ is pretty common with VM/MAV. All I ever received was a ‘probable MAV’ diagnosis the results for which were ‘probably multifactoral. So don’t feel too let down.

Best to know straight off. Some don’t mention it then you’d get disillusioned when they don’t appear to work after a week or two.

Sounds as if overall it went pretty well. Good luck with the meds, Helen

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I’m glad to hear that it’s definitely not Meniere’s disease.

I’m sure it must be frustrating at this point in time, but just do everything the doctors tell you to. And, vent, post updates and ask questions here. :slight_smile:

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Thank you @Heliotrope …I’ll sure be venting cause at this point it seems that’s all I can to do and who better to understand me that the nice people in this forum lol.

I do feel thankful about being able to see a neurotologist so soon into my journey, I know it’s taken way longer for most

Same with my Neurologist - never said the words. We just treat the migraine symptoms (head/nose pressure) and hope dizziness goes by the wayside (and it does).

That’s where I find the Cefaly device particularly helpful. I would encourage you to discuss it with your Dr because it can be used as a parallel path to treating migraines. Waiting 3 months for a drug to do something is the pits, especially when it doesn’t work and then you gotta titrate down and go on something else. That said, it is nice to know which treatment is working.

Anyways, sounds like your visit was fruitful, good luck and keep us posted!

Erik

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Neither I saw did either. Neuro-otologist said ‘Migraine causes Vertigo’. In their written reports they referred to ‘probably Migraine Associated Vertigo’, and ‘having migraineous’ symtoms, ie rear head pressure was ‘migraineous’. That was as good as it got. Helen

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