The Vestibular Migraine Community

How do you know?


#1

About two months ago I started to feel off balance. Like my brain was moving at a different pace than my head. Its every day. Some days better some days worse but every day. I also feel like a have a vice like grip around the back of my head and my ears are often plugged. I have had an MRI and catscan and nothing untoward.

My question is how do I know if this is migraine related. I have always been a headachy person but not sure if I have had migraines or not… I especially got headachy around my periods and coincidentally I am now per-menopausal. I do get headaches now but they can be helped with advil. But a couple of times a week I get this weird pressure on one side of my head which I can feel in my hands and feet (weird). I don’t know if this is a silent migraine or something else? Is there any way to know if your dizziness is attributable to MAV or should I just start the diet and see how it goes?

Jen


#2

People are going to get REALLY BORED of me saying this, but IMHO, 24/7 chronic dizziness IS NOT caused by migraine. There is some absolutely counter-productive dogma in the medical community right now that this condition is caused by migraine. As far as I’m concerned it is ABSOLUTELY NOT.

There appears to be no proof either way, but far more compelling an explanation to me is that inner ear issues cause migraines and some people are more susceptible to migraines than others, but DON’T BLAME THE BRAIN, a migraine is almost certainly a completely natural response to a mess of sensory signals that no longer make sense and confuse the brain.

I’m in a particularly interesting position because my ‘MAV’ came a few months after an initial 5 week spell of dizziness and imbalance caused by me pointing my shower into my ear. I am CONVINCED mine has a physical pathology and cause, yet I have all the same symptoms that make up MAV.

I think its FAR MORE likely that MAV is simply a form of inner ear ‘upset’ or ‘injury’ that isn’t as extreme as, say Meniere’s, but nonetheless causes enough upset to give the sufferer regular migraines. Even Dr. Hain documents that BPPV, fistula’s and Menieres can give the sufferer migraines, so why not some other inner ear issue?

I’d go further and speculate that one day it may turn out that many migraine sufferers probably have some issue with their eyes or ears, however slight.

MRI scans are woefully inadequate to resolve the kind of detail we are talking about in the inner ear. They can rule out tumours on the nerve, but cannot resolve blood or air in the labyrinth, for example, both of which would probably upset the smooth working of the sense. A cone beam CT scan is probably better, but even then I don’t think there has been any medical literature that sheds additional light on what’s going on in the inner ear during dizziness and vertigo attacks. And lets not get started on how you accurately measure fluid pressure in the ear …

The diet is still a good idea as it can decrease the chance of a migraine reaction to the sensory upset, and “migraine prophylaxis” with meds seems to dampen the dizziness feelings as well as the attacks.

Hope you feel better.


#3

Yeah, I am not tied to this being MAV but the doctor’s have pretty much left me alone with this so I am trying to figure things out myself as far as I can until my next appointment. The only things I have ruled out are brain tumour and MS pretty much. Don’t think it’s Meneire’s or BPPV as I don’t really have attacks or spinning vertigo. Other than that all else is up for grabs. MAV, LABS, Anxiety, hormones, neck…really no idea at all. Thought that starting the Migraine diet certainly couldn’t hurt…?


#4

Correct, the migraine diet should reduce the migraines. But it doesn’t improve the dizzies, imho, for that you need medication and/or time …


#5

By medications do you mean migraine medications?


#6

well, the medication prescribed for ‘MAV’:

http://www.dizziness-and-balance.com/disorders/central/migraine/mav.html


#7

I agree completely! I had 24/7 lightheadedness for years before the migraines kicked in! Definitely stemming from an inner ear issue, but not a single test has found anything wrong with my ears. My ENT who is super smart admitted that most test can’t really see what’s going on in there. Sounds more like a guessing game after hearing patients symptoms.


#8

So did you take anything for it before trying ( I assume migraine meds)? Its really hard to deal with. Just did a 30 minute cardio workout and now feel more dizzy and nauseous.


#9

My neurologist said that you never really no for sure if it’s mav. You have to rule out all the other possibilities and then, if you want to, try a ssri and see if that makes you better. If it does makes you better, then it is probably mav. That’s his theory…but he had to Google MAV in the first place when I asked him if that could be it so hahahaha.
But I guess he is right…I am on that track now. Just had my mri, ct scan was clear, I denied the vng test (because my balance is perfect, knock on wood) and started Effexor 4 weeks ago…will see if and how I will heal.


#10

James, on a Facebook group I saw this post http://www.ctvnews.ca/mobile/health/meniere-s-disease-and-blood-flow-could-there-be-a-link-1.3312503 and that is totally what I am thinking. For me it’s for sure blood flow related…although my rocking sensation is. The minute I took betahistine (a drug that stimulates the blood flow in your inner ear) my rocking stopped. Unfortunately I had nasty side effects but from that moment I knew it has something to do with the blood flow.
Also before this big attack happend a nature doc prescribed me Vitamine D with Vit K. The vitamine K was a way too high dose (2500 times the daily advice). Vitamine K is well known for bloodthicking. I took that six weeks and BAM the big vertigo started. I do not know for sure but for me it feels like blood flow problems…and maybe even thickening the inner ear fluid as well.

Does that makes any sense?


#11

I’m totally with you on the blood flow theory as well! Ever since mine started 11 years ago I’ve told anyone that would listen that it seems like my brain isn’t getting the blood or oxygen it needs. I tried Betahistine as well, but didn’t really notice a difference.


#12

I’ve had multiple MRI’s though and mine are not clear. I have “white spots”…never remember the technical name…on my brain and they appear to be growing in number over the last 11 years. I was checked for MS at the very beginning of all of this…spinal tap, etc…but that was ruled out. Some say migraines leave white spots, so I choose to go with that theory. The other theories out there don’t sound to pleasant or promising to me at 40 years old, so for now I’m rolling with that.


#13

The blood flow theory sounds interesting. It seems like a lot of people with vestibular issues also have neck issues (including me). My ears are often plugged and my head feels like there is a bowling ball in it…


#14

Neck stiffness is a sign your brain is trying to compensate with your eyes. You can combat that with a vestibular suppressant. Amitriptyline is good at eliminating it.


#15

I find the blood flow theory interesting, as I have suffered with a stiff neck without known cause on and off for years. All my life I have suffered with cold hands and feet…although no actual problem, such as Reynards’ disease, exists.

What you say, James, also makes sense.

Interestingly… both Ginko and Feverfew, which are advised for ‘vertigo’ in general, are meant to help increase blood circulation.


#16

Would Lexipro be considered a vestibular suppressant? I am only on 5 mg and its only been about 3 weeks or so. Does feverfew seem to work for anyone?


#17

Hello there!

Can I please ask how the Effexor worked out for you?

My doctor is going to start me on not next week and was hoping for your feedback.