Im on another forum and well anyway when I told a few my symptoms they told me they think it sounds like Menieres disease esp to the ear symptoms I have too. I feel dizzy everyday with some moments of clarity and suffer dizzy spells , head jolts and tinnitus which is usally mild but can vary in intensity.
I wouldnt mind if it was MD but hate doubting my diagnosis off my specialist and think maybe I have got MD and it will get worse ? or Im not on the right drugs etc etc.
Thought I was done looking for causes and just look at it as MAV and some kind of vest disorder. Does anyone else do this ? Dont want to be treating the wrong thing (Sigh)!
PS I suffer from a lot of head and face numbness also
Don’t feel bad, and never stop looking for answers and making sense of it all. Most people diagnosed with meniere’s really have migraine instead. There are ways to investigate for yourself, I recommend starting with these books…
Heal Your Headache, by David Buchholz
The Migraine Brain, by Caroline Bernstein
They explain migraine so well and reveal the sad truth of misdiagnosis, which is rampant, and how one can take care of themselves often successfully without medications. Meniere’s is a guess, so is migraine, and once anything obvious is ruled out with appropriate testing, the best that a person can do is to take charge of the diagnosis. Meniere’s does not cause chronic dizziness, numbness, or so many other manifestations of migraine many aren’t even aware is migraine. Please get the books. They break the migraine myths that so many doctors, including specialists, don’t truly understand. Many are treated for the wrong things and have even been harmed by procedures meant for something they do not have. When it comes to migraine, the best offense is often without the risks of medications, and the books explain when medications are necessary and what they can do, good and bad.
Is it a Meniere’s forum? Because they will probably think you have Meniere’s. Here on a migraine forum we’ll think you have migraine. If you go to a Panic Attack forum they’ll probably say you have that. See where I’m going with this?
The best you can do is satisfy yourself that you’ve had thorough testing and got a second or even third medical opinion who concur with a diagnosis - whatever it is. Endlessly second guessing yourself and your medical team based on what people on a forum (any forum) say is just going to mess with your head.
One thing to keep in mind is that Meniere’s is actually very rare and migraine is really really common. Treatment for Meniere’s can be invasive (surgery), permanent and irreversible. Treatment for migraine is not. If it were me I would be going with what is most likely and what is least invasively treated before chasing rabbits down holes.
I was diagnosed with MD, treated unsuccessfully with diet and had bad effects form customer pills, and advised I needed an operation. I asked my neuro for a referral to a second surgeon before accepting the operation, and he looked at my records and referred me to John Carey, who told me I have MAV. His treatment has worked pretty well, except when weather and stress gang up on me. End of MD story.
Thankyou guys for replying ! Its so confusing isnt it all this stuff sometime :? Its not an MD forum its an open forum for vest disorder but someone with MAV actually told me she doesnt get room jolts etc and that mine sounds like MD .
But I do get migraine and have no hearing loss . Wish I could look inside my brain lol
Thankyou guess I will keep trying the meds maybe that will give me the answer x
Blondie by room jolts is it kinda like the room is a carpet and someone picks up the corners of the rug and gives it a shake/snap - a bit like you might shake /flick the washing before hanging it on the line? Makes your stomach turn over as well a bit like you’ve just crested a big hill on say a rollercoaster? If so then I have had that experience quite a bit - it only lasts a second/split second, but it’s very disconcerting - sometimes I almost feel like I thump back don into my chair (which of course I don’t). Once my meds kicked in that stopped happening
Gabrielle’s description of ‘room jolts’ fits right in with what I get too. I sudden lurch like I’m in a lift that has dropped. Also ‘brain & body zaps’ where it feels like a jolt of electrickery has zapped me.
I wouldn’t be too concerned that another migraineur doesn’t get exactly the same symptoms as you do. We have commonalities but also many variations and differences in symptoms. Given that it’s a brain condition that isn’t too surprising - the brain being the engine room and all.
You explained my roon Jolts perfectly its exactly that! they are weird like Victoria says like electricity . I wonder what causes them :? Do any of you work with this condition? Thanks x
