Newly diagnosed but still wondering!?

Hi everyone,
I’d love to hear your opinions. So after suffering since i was 12 (im now 24) with episodes of vertigo, ive been diagnosed with a ‘migraine varient balance disorder’. I saw a great consultant who explained everything perfectly and everything seemed to fit perfectly.(i think hes been mentioned on the boards)
As stupid as it probably is, now that i am home i find myself questioning the diagnosis - after searching for years for answers, it just seemed too simple.
I wanted to ask a couple of questions to fellow sufferers of these migraines to find your experiences:
Does anyone else, during an attack of vertigo, only get the spinning sensation when the head is moved? I can sit perfectly still during an attack with no vertigo happenning but as soon as i move my head pow!, room starts to spin. Ive always assumed this is a BPV symptom, not the MAV one?
Im currently still suffering after the last attack afew months ago, not with that initial vertigo, but with a feeling of motion/ rocking feeling - like im on a boat. I notice it most when im reading - anyone else suffer similar?
Can you get ear related symptoms from the migraines? My occasional muffled hearing and tinnitus has always leaned me towards more inner ear related disorders.
All advice and views would be greatly appreciated!!
Thanks for reading! :smiley:

Hi there,

Yes, MAV, can definitely cause both tinnitus and sensations in the ears, fullness, and muffled hearing are some of them. My tinnitus will increase with an attack and I get all manner of ear symptoms.

It certainly sounds like you’re a very likely MAV candidate with how long this has been going on and the fact it started when you were a child. Is there any history of migraine in your family? Did your doc explore the BBPV angle? Have you tried the epley manouvre?

H

Yes, when I get the severe vertigo attacks, if I sit propped up, completely still on the bed, it will stop rotating, but move my head a fraction of an inch and it will start up again. On a daily basis, I have tinnitus, ear popping, ear flooding on and off.

Christine

Thanks for your replies, its very reassuring!
I havent had the epley manouver tried, altho when i saw an ENT doc recently he tried to spark off the vertigo with a certain manuver, the name i forget, however this was negative.
Im glad ive found this forum - im going to enjoy having a look around!

I had all kind of ear related issues when this all started, daily ringing and popping, ear fullness (like i’m hearing under water) preceded the dizziness/disoriented feeling… and yes, like I’m walking on a boat… or feeling like I’m drunk without all the happy feelings. Have you gone to the doctor? My only advice would be is to push the issue with your doctor, you are not imagining it. I was dismissed several times by my GP and made me feel like it was all in my head. It’s a very hard thing to explain to people that have no idea and can’t even imagine feeling that way 24/7 for weeks/months with no end in sight.

I’d have to agree with what others have said… My ears have been ringing constantly since last February when this all started (for a 2nd time). I’ve also had constant ear pressure in one ear and a good bit of popping here and there. It took many visits to my GP to even end up at the right doc who could figure it out. Partly because I had so many “random” symptoms that didn’t seem to be the least bit connected - ear stuff, sinus stuff, hormonal stuff, IBS, feet tingling, insomnia… I was first sent to an ENT for allergies. Then an endocrinologist. Then an allergist. Lots of other docs as well, but was pretty much told - and I was prone to agree b/c of the ear issues - that it was likely an allergy thing. And stress. (Nice.) Finally, after I went to a different ENT who really took the time to listen and think through ALL my symptoms, I was told the symptoms were either “classic” Meniere’s or MAV issues. I was sent to a neurologist and yet another ENT for vestibular testing. The vestibular testing came back “normal” despite the fact that when I close my eyes and march in place I go forward and to the left. Go figure. Like you, I had been sure of the ear/allergy thing. And here I am with a migraine issue? (I’ve never even had the stabbing pain kind of migraines…) I know it’s hard to believe that a “migraine brain” can cause so many non-headache issues, but if you think about it, your brain controls everything - and there’s a lot packed up in there in your head! :wink:

Hi

Even though I’ve never had the true spinning vertigo, I get half spins when my brain goes mental and it’s coupled with the electric shock from hell!!

The motion/rocking was one of my worst symptoms. It was torture. Now 16 months later it has diminished quite a bit but has never truly left me but I only get it when I lay down to go to sleep now and I’m perfectly still.

Also my left ear got crucifed by MAV. It gets blocked, muffled, ringing… I can relate to Van Gogh!!!

Did your doc prescribe you any meds to tackle this BS?

Mup