New Here...need some answers

Hi Everyone,

I am a work at home mom to 4 kids…I have suffered from classic migraines since I was in my early twenties, I am now 36 years old…I have been able to manage my migraines with diet…most of them are from food triggers…until recently…

I had my first bout of vertigo in April of 2010, it was followed by dysequilbrium, I got severly nauseated…went to an ENT, they looked at my ears and cleaned them out, and sent me on my way…since the vertigo was not present at the time…

For the past several months I have had chronic dysequilibrium and nausea…recently, on October 20, I once again woke up with vertigo and severe nausea…and this horrible feeling of constantly moving…like things are floating…I ended up seeing a doctor who did the Epley Maneuver and diagnosed me with BPPV…after that I got worse and ended up spending several days confined to bed…about 4 days after the vertigo episode I got a horrible migraine…once the migraine let up I started to feel somewhat normal…I have good days and bad days…moer bad than good it seems…

I have seen an ENT, who has scheduled a VNG, which I will have done on November 1st…no one seems to know why this is happening…I dont see my Regualr doctor until November 8th…

This has become something that has left me confined to my house and my bed…

Does this sound like MAV to anyone?

Hi there,

Yes, it absolutely does ring of MAV. Presuming you did not have BPPV (which seems unlikely given the result of the Epley) and your history with migraine, you sound like a textbook case. Of course make sure you have your situation reviewed by a neurologist and print out some of the information here if necessary – especially the info sheet from Nicholas Silver. Hopefully your neurologist will spot the problem quickly, however, there are still some out there who do not identify it or are unaware of migraine being the most common root cause of dizziness and vertigo.

Good luck and post here any time you need to ask questions.

Scott 8)

hi there, the same thing happened to me, i had two bouts of BPPV spanning over two months, i went and had the Epley Maneuver done. i immediately started having headaches. then i was watching tv one night when everything started moving. ive had an inner movement like a pendulum, i was stuck in bed for a long long time trying all sorts of medication. the one that helped the most was epilim. although i am on 3 medications, epilim, sandomigran and lexapro. mainly because i was so bad at the time i couldnt stand or do anything for so long. ENT’s are useless for this (from my experience). stick with a good neurologist who knows about vestibular migraines.

michelle

It’s worth noting that a BPPV attack is just the sort of thing that can constitute a “Big Bang” which kicks off a chronic migrainous state. It may also be that the BPPV attack (if that is in fact what happened) is simply the result of being a migraineur. BPPV occurs at a rate 3x higher than that seen in the non-migraine population.

S

hi mommy2abcd,

One of the features that differentiates between the vertigo from bppv and mav is the length of the vertigo attack. Vertigo with bppv is shortlived, a minute or two and usually comes on when the head is turned in a certain way. MAV can make you feel terrible for days, weeks, years. BPPV shouldn’t do that to you.

I’ve never had the Epley but just reading what it is like is enough to make me feel sick, ugh!!

What you describe certainly sounds very much like MAV. A good doctor is one of the keys to beating this disease. I’ve been to many and all seem to say something different. Right now I’m under the care of my PCP only for treating this. A neurotologist is the best type of doctor to see for this. Any chance you are near a large city, which is where they usually are?

book

One side note loosely related to Epley. . . on my last visit to the MAV otologist, they did these sudden jerks of my head, confirming that my eyes track a little slowly. Apparently a way to demonstrate that I haven’t fully compensated for vestibular deficit that came with my MAV onset.

Hi everyone

After reading this forum for months now, i have now come to accept the fact that I also have MAV. I was diagnosed last April 2010. I decided to join this forum in particular because I saw the title new here. This is my first time writing and I feel at this point I am helpless. I have now been living with MAV for over a year and a half, seen every doctor out there and still have no relief. I have times when I do feel a bit better, but the disequillibrium never really goes away.

I tried apo amitriptyline with other blockers on the onset of my migraines, but no relief. I have been taking a lot of Tylenol migraine and after reading many threads realised that it is most probably causing onset migraines to come about. However, I feel that the Tylenol or Attasol 8 with codeine is the only relief I can get right now. For the past 2 weeks I have been feeling horrible and for the past 4 days have not really been able to get out of bed. I keep going on short and long term disability at work but it is running out since every MRI I have had and every other test shows up normal and so there is no reason for the insurance company to keep paying me to miss work.

I live in Montreal, Quebec. Does anybody out there know of any good neuro’s that are experienced with MAV? My neuro I have now keeps saying to be positive and things will eventually get better. But I do not know what to do any more for my dizzy spells? Need advice please.

Thank you

Hi guys,
I haven’t had this condition long at all but it has become my obsession over the past week to find out what I have. I recently moved to France after finishing my degree to live with my girlfriend. I started at a rugby club here as I played in Australia and needed to find some friends. I ended up going out with them over a week ago and took poppers with them. It was my first time using it and my girlfriend later informed me what it is used for. I woke up the next morning and my legs fell from underneath me… I was very sick and spent the rest of the day in bed. The following day I was a bit better but over the next few days I developed a vicious migraine that has not left me with a day of peace since.
I have read many articles on the importance of helping the brain to recompensate with the vestibular nerve, however, I also feel that my movements are causing me to have these migraines and all I want to do is sleep. The doctor prescribed me with antivertigo medication, however, it has been noted that due to the supressing effect this drug has on the vestubular system it can impair the process of recallibrating… Due to reading this I stoped the medication as i didn’t feel it was helping me anyway.
I have blurry vision when I move my head, however this has gotten slightly better over the past few days and an unrelenting headache that makes me want to cut off my head. I feel as though keeping active (trying to help the vestibular damage) is causing my migraines and i feel that if i rest (to help the migraines) i will not get my full balance back and eliminate the dizziness…I feel it is a double edged sword.
Does this sound like MAV? And should I wait a few weeks before seeking help from a neurologist? Thankyou so much in advance.

PS. I am a 23year old male. Have had a few migraines, the first being in 2003. I was dizzy one time before after a big night on tequila, although it only lasted 2 days. And I’m sure it’s not BPPV as i do not have a particular side that makes me more dizzy. After a shower I also feel alot better, as though the pressure has released. Thanks guys!

you know you are getting old and out of touch when you have to ask what poppers are :lol:

if this is what you mean http://www.justaskus.org.au/browse/drugs/inhalants-amyl-nitrite-poppers then the extra kick of systemic vasodilation type effect from them might have tipped you over if you were already migraine susceptible. They do also seem to have an impact on vision

however 5 mins of googling doesn’t make me an expert :smiley:

Yes, that is exactly what i took. Does this ever get better though? Does it usually get better after the initial onset? I’m very worried!

I was advised to take them before exercise, by a respiratory expert, because I have “early stage lung disease.” Helped a little with shortness of breath. But this is before the MAV kicked in. Haven’t taken them in a few years, and don’t know that I’ll risk it. If I want to breathe better, I’ll just take more time to build up my butterflies, keep mixing in sidestroke.