Hi All

thanks for the feedback on my previous post.

I have been reading some of the other posts and feel like I am getting more and more confused. (Just when I thought I understood some of this vestibular stuff.) What is really going on when you have MAV? What causes the Migraine? What does it do to the brain, and the vestibular system? How can a migraine cause damage to vestibular system (I saw mentioned in a post from gloria to Adam) And how can you not have a headache? Confused on what the mechanism of action is, I read that is was restricted blood flow and then was on a western site that said this was not the cause?

I am beginning to think I may have MAV after years of thinking it was LABS which turned into BPPV and doing VRT. The light sensitivty is caused by MAV? I feel like a light hits my eyes and thats when i get dizzy?

My other question is what are the preventive meds designed to do? How do they work? Has anyone recieved relief by any other means?

THANK YOU FOR ANY FEEDBACK THAT HELPS ME UNDERSTAND THE MAV BETTER :angel:
JAde

Boy, that's a tough one to answer in a short amount of space. Adam is really knowledgeable on migraines in general so hopefully he can summarize for you.

If I understand it correctly, in a nutshell, if you have migraine disease, the blood vessels in your head (which means around your brain to cause headaches, around your inner ears to cause dizziness, around your eyes to cause visual wierdness, etc.) constrict during an attack and cause all kinds of HELL (our gazillion symptoms on this board - dizziness, headaches (sometimes), weird sensations, fatigue, sore neck, anxiety, etc....)

If you have migraine disease, the best way to avoid the "breakouts" or "attacks" is to reduce your triggers, exercise (to open up your blood vessels for better circulation), and you can take preventive medication if those don't work. Some people also prefer to NOT take preventive medication because of the side effects, but rather take abortive medication (treat the problems when they arise). I am doing the abortive route right now because of fear of side effects from preventives. Seems to be working OK for me, BUT not good enough. I think my main problem is reducing my MAIN trigger which is hormonal fluctuation, which is the cause of migraines for many, many women.

Thank you Missy. That was pretty good explanation. Gave me a better visual. i agree with you on the hormonal. The only time I really get Headaches is around my period and the eye stufff gets even worse. I definately feel better when i exercise but if I push it I feel worse, like after an hour of walking my system has had enough. Lately I have had so much anxiety with even walking, I feel like a wimp scarred to go out in the world alone.

I am going to see a naturalpathic doctor who deals with a lot of hormonal stufff. I'll let you know what I find out. This stuff is weird. Even talking to him on the phone he said, I help a lot of people with vertigo. And I am like, i don't have vertigo, it's different. I think the only people who understand are the ones who have experienced it. I could not have imagined how bad this would be even if someone had described it.

Thanks ffor your feedback

Hi Jade,

A really good book to read is "Heal Your Headache" by Dr. Buccholtz. He is a doctor at John Hopkins who specializes in migraines. He explains the whole migraine phenom really well and makes some non-medicative suggestions to improve your condition.

He also talks about vestibular migraines causing problems in your inner ear from damage to blood vessels.

I myself am really torn on this whole issue of migraine versus VN vesus what ever else out there is causing this whole dizzy nightmare for all of us. I think really the only way to know if a migraine preventative would help is exactly what Adam says, is try it.

If you can get a copy of that book, it is really worth the read.

Take care,
Gloria

I understand Jade, believe me! I have an appointment with a Nurse Practioner who I heard is great with helping with hormone hell. My OB/GYN just "didn't get it"! I think the docs are too busy - the nurses have more patience and understand better.

Anyway, please YES, let me know what the naturopath says. I will try anything natural. This has DEFINITELY been a major cramp in my life. Seriously, I get really bad mid-cycle, and also during cycle. So when does that leave me feeling normal? Only about 4 days out of the month where I feel decent. It is no way to live I tell you. I am so fed up with feeling like a feeble, weak, 90 year old lady. I know what you mean about not being able to exercise. Believe me, I haven't started yet because I never feel WELL enough to do it! :mad:

I had a really good streak last month, and this month has been very tough starting from my period 3 weeks ago. I have literally had a headache ever single day ever since - sometimes dull, sometimes harsh. I am going insane!!

Missy I will share with you what I learn. It is all going to be ok.:angel:
Have you tried EFT for your headaches? May get some relief in the imbetweens

Gloria: i just went to Amazon and got the book on Headaches. I am going to give the diet a try and see if that has something to do with it. Cause this light sensitivity must go away.

I had never heard of EFT so I just checked it out and sure, why not? I'll give it a go. Thanks! :)

I also have that book and have been following the diet for 3 months or so and it has definitely helped me with the dizziness. And I also haven't had a "10" migraine since I started it, so that's good. It is very tough though - the diet. You have to basically eat all natural, no preservative foods, read labels thoroughly and you don't get to go out and eat anything you want at restaurants because you don't know what ingredients they use. Even if they say they don't use MSG, it doesn't mean that some of the pre-packaged food they use doesn't have it. It's tough...but do-able.

Think of the brain as the central processing unit for everything (which is really what it is). Vision, touch, smell, hearing, balance.. everything. Your eyes, inner ear, skin etc. is not much more than just a simple sensor. It is then responsible for relaying this to your brain which is where it gets turned into something meaningful.

If you have migraine (notice I never say A migraine - because its a disease, not a periodic headache), there is all sorts of activity going on in your brain that shouldn't be. The constricting and expanding of blood vessels is really only one thing that occurs amongst a whole host of things (release of neurotransmitters, increased activity in some areas of the brain, reduced in other areas). It is so complex that the whole process is certainly not understood. But there are parallels between migraine and other disorders like episodic ataxia - which, if you have a read about it, shares some stunning similarities. Episodes of ataxia (inability to coordinate muscle movement) that can occur after being startled, physical activity, and particularly times of stress. It also responds to similar drugs. Hemiplegic migraine - in which half the body feels paralysed during an episode. Both these conditions can also come in forms like migraine where the symptoms become continual, and weakness and ataxia becomes more permanent (like those of us who have chronic dizziness instead of rotational vertigo). They know what causes both hemiplegic migraine and episodic ataxia - gene mutations in genes that code for ion channels. So they are looking at these as the cause of migraine as well, but it is such a common disease that it is no doubt very diverse and there would no doubt be literally hundreds or thousands of inherited gene mutations or spontaneous gene mutations which cause it. MAV is a smaller subset and I believe they'll know many of the causative genes within the next 5 years.

I wouldn't get caught up thinking blood vessel spasm is the cause.. its just one of the things that happens in a migraineur and may just be a small part of it. What makes this interesting though is that the inner ear of MAV patients can certainly be damaged by migraine. The inner ear is very close to the brain and there are blood vessels that supply the vestibular system that run through or adjacent to the brain. Reduced blood flow may be the cause for the peripheral damage in those with MAV that also have a peripheral vestibular lesion. It is not necessary at all that dizziness comes from the inner ear, and probably doesn't. It is probably localised to the vestibulocerebellum in the brain, which is where input from the inner ear is received. If migraine is messing with this part of the brain, there is no chance it can process signals appropriately and leaves you dizzy and unbalanced.

Thank you Adam!! That was very clear. I guess it does not hurt in my case to assume potential MAV and do the headache diet.
Missy: If you do the EFT, tap on the emotional aspect as well as the physical and if you have any questions let me know.
I'll let you know how the diet works.

thanks!
jade:angel:

adamw.....is it possible, i'm assuming, that doing the diet may not even touch my vision related symptoms??? my doc wanted me to try it first, but i just don't see any difference, and in my case with a limited schedule between college, work, and family--i don't really have the time and effort to make sure i follow it correctly every waking moment...plus from the beginning of all this i have lost weight-and was underweight--and trying to get back to my previous weight--which i'm almost there. so, essentially, i don't want to cut a lot of the things i need to gain weight back. i am also assuming from your previous post that this junk can be mimicking inner ear issues, such as fullness, constant popping, some ringing?????
thanks again for your wealth of info on this!!!:angel:

Yah - that's what really trips me out about this MAV is all of the ear stuff. I definitely have ear fullness, popping, clicking, eustation tubes staying closed after I yawn, etc. That sounds like inflammation somewhere - like the blood vessels around that area? I don't know, but the ear fullness definitely goes hand in hand with the dizziness. It seems when my ears aren't so bad, my dizziness isn't either.

Yah - that's what really trips me out about this MAV is all of the ear stuff. I definitely have ear fullness, popping, clicking, eustation tubes staying closed after I yawn, etc. That sounds like inflammation somewhere - like the blood vessels around that area? I don't know, but the ear fullness definitely goes hand in hand with the dizziness. It seems when my ears aren't so bad, my dizziness isn't either.

Well adding to this post, I just say that you can have MAV and some vestibular dysfunction added, complicating things further, as yo u need to control the migraine which surely is going to tamper the vestibular recovery, and the vestibular injury itself.

So it could be possible that some of your ear symptoms are really coming from it, VN, BPPB, TMJ, ETD, and on top you got migraine, so you're into years of symptoms.

And even as the migraine can be related directly to some vestibular damage caused by troubled blood vessels, it's more the mayhem that this condition causes in your brain(your compensation central)processing the cause of our woes, than any direct damage it could cause to the vestibular systems.

I think that migraine is as common as it is overlooked by the doctors(even some neurotologysts like mine) in long term dizzy patients, much more probable than tumors, Meniere's, MS, and all those less probable conditions that some Phd's like to put up front as a first diagnosis.

Finally, as good news as migraine is quite controllable when diagnosed, it's treatment is a trial and error one, so what helps someone might not do anything for other people, that's why is advisable to start with a general approach(diet, lower stress, some vitamins), and just go into medication under proper medical supervision.

I agree with what you are saying about the MAV and vestibular function ect. Personally I have never had good circulation, since I was young my ears get cold very easily and my jaw and sinus feel tight in just limted amounts of weather. When i look back prior to the inner ear really becoming an issue, I think I have had vision issues and motion sickness, so it was somewhere lingering in the background, perhaps my achilles heal, if you know what i mean. Anyone have this experience as well?

I also have a very sensitive nervous system, so it is just aggravted by this inner ear stuff. This thing about anxiety versus inner ear anxiety I have noticed is this, say I am in a restraunt when I used to be "nervous" eventually I could relax and feel comfortable, wih this inner ear, I feel like the longer I am in the busy restraunt the worse it gets, I am reaching a threshold. Kind of a tanget from the subject of this thread but thought I would share as I was in a very busy restraunt last night.;)

I am going to concentrate on the Migraine diet and improved circulation and VRT. Wow. This stuff is consuming. I am so sorry you all have to deal with this, but thanksful to have people out there who understand.

Jade:angel:

Good points, Stargrave - very well said. It's just GOT to be the case - the fact that the migraine beast awoke in conjunction with some inner ear thing. I've been thinking that all along because of the ear weirdness. That brings good news too, in that it will continue to "clear up" and get better as the vestibular damage heals.

Which brings me to your point Jade, about things getting worse and worse. I TOTALLY agree and the last time I TRIED to go out to dinner, that happened to me. I wasn't feeling so great in the beginning, and as every minute went by I seriously felt worse and worse. Yes, the anxiety was there, but I REALLY think that the reason why it keeps escallating is because of the overload on the vestibular system. Noise, lights, busy objects and people moving, a lot of talking, flashing lights, plate scraping, glass clinking, etc... I think it just overloads the already weakened vestibular systems so it keeps getting worse. When that happened to me, as soon as I got OUT of the restaurant I felt better. I know this is tell-tale anxiety, but I really think it was more to do with too much stuff going on for the brain to ingest.