Oh my gosh. This is why i donāt want to go for therapy. Iāve heard all sorts of ātechniquesā that just seem pstronising to me. I donāt want to console my inner child every day, or write a lettrr a letter to my depression. I donāt want to personify my condition, i donāt see how that helps. I donāt want to paint a picture of how I feel, Edvard Munsch already did that with The Scream.
Not related to mav, but i thought i had a yeast infection although my symptoms werenāt textbook. The doctor told me āit canāt be yeast. If i could put money on it, iād say itās not yeastā. I sent off a test to the lab and guess what? It was yeast. I still had doctors saying ādoesnāt sound like it to meā and had 3 lab tests report it before they accepted it.
ENT, one said āYou shouldnāt be this ill with what youāve got wrong with you!ā, same guy āWell youāve got funny eyes (light sensitive he meant cos I was squinting against the bright sunlight pouring straight into my eyes as I lay on his couch) so you shouldnāt expect to have good balance like normal peopleā!
Years ago in hospital for gynaecological op, the consultant on his rounds with his entourage of students at the end of the bed mentioned my condition by a name Iād not heard of so I asked what it meant to which he replied āBe quiet. Nothing to do with you. I was talking about you, not to you!ā Helen
My ARNP Neurologist who works for the Headache Clinic of a Neuorsciences Institute from a major college told me the head MD wanted her to patient dump me because I didnāt fit the mold of their regular case. (I refused and educated her instead.)
Yes, well you were about to interfere adversely with their success statistics so One can see it from their point of view, I think not! One neuro and my own GP both said I was āa complicated caseā which, in the reserved atmosphere of the UK medical consulting room, is a polite way of saying ājust go away and cease to bother us pleaseā.
Great if you can find a consultant prepared to co-operate. All the UK ones Iāve ever come across seem to have some (totally unfounded) belief they are all knowing and omnipotent. One said to my sister-in-law only last month ācome in, sit - there - and remember I ask the questionsā. Iāve a feeling any attempt made by a patient to āeducateā them would be met with very short shrift unfortunately. I thought the migraine specialist neurologist might have much more approachable but once Iād queried her choice of a possible add in drug for me referring to medical evidence from Dr Hainās site I received no reply to my email and when eventually I spoke to her secretary asking if sheād received my email, I was told she had but Iāve never heard from her since. Possibly a cultural thing I thought. Helen
First GP I saw with MAV said it was āall in my womans headā but I could try to cure the ear fullness by āfinding some way to get steam into my earsā
ENT consultant told me that I was a āworry wartā MAVāer and that giving up caffeine and adopting a positive attitude to life were all that was needed. He also castigated me for wasting an appointment when he had āpeople with REAL ear problems to seeā and as a parting shot told me that āIF I had half the symptoms I said I had that I would long since have killed myself as no one could live like thatā.
I went to a very well respected ENT and had an awful experience. He did get rid of the Vertigo I had but when I went back to see him about 6 months later for ear pain. He looked at my left ear and didnāt see anything. I continued with my symptoms. He just looked at me and said, āYou know, you are oldā, and said loudly.
Well ā¦ to be fair to this person it is a leading hypothesis as to what causes this illness (and causes them to remain sick) and if theyāve observed patients recovering after getting their stress under control then perhaps that is in part why theyāve come to this conclusion. I believe stress is very likely to have caused my issues. For more on that read: https://mvertigo.org/t/anti-diuretic-hormone-does-it-play-a-role-in-mav/21692?u=turnitaround (TL2 required).
Not for MAV. For Ehlers Danlos and (now) Fibromyalgia. After my shoulder dislocated itself in May my chiropractor said itās time I get an MRI and see an orthopedic surgeon. As I was telling the surgeon what she said and that I suspect EDS because I have about 18 screwed up joints with stenosis, bursitis, tendinitis, edema, bone spurs, etc he said, āYouāre using all the right words, whoās feeding you these terms?ā Usually my brain engages before my mouth. Not this time. My response, which surprised both of us, was, āJust how stupid do you think I am, dude?! Iām quoting MRI resultsā. Man literally deflated in front of me. Went very well after that. Still didnāt get the MRI. My neurologist took over from there.
Donāt get intimidated or sad; get mad. Advocate for yourself like you would for your kid.
My GP diagnosed me almost immediately with vestibular migraine when I told him I had auras and felt dizzy. He offered preventatives, but I declined because, at that time, I felt it I could manage the condition. When I had to go to hospital last year, the neurologist also diagnosed me immediately with vestibular migraine. So no bad experience there.
However, a few years back I went to a surgeon for an unrelated problem and I had written down four questions. He reluctantly answered two of the questions and then said āyou ask too many questions. I will tell you what you need to know when you need to know itā. My answer was āI have two more questions and I want you to answer themā. He looked at me very surprised, then he did answer them. When I left he put his arm around my shoulder in a very paternalistic way.
I did not see him again and I also changed my GP because he was the one who had referred me. I agree wholeheartedly with @flutters:
