Hi all, Greg here,
I found this post on healthboards. Pretty good at explaining what’s going on here with us. It makes sense to me. Here it is:
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.
Thanks…it is a clusterf*** to say the least!!
I really, REALLY hope they can figure this stuff out…it’s amazing how many people suffer from something I never even knew existed before I got it.
Thanks for sharing!
I know, me too. I’d have never thought in my life something like migraine would ever cross my path. I’ve always known people with migraine and it was always headache related and I never thought anything else further until I was diagnosed with MAV. I couldn’t believe it when the specialist I saw told me I was having migraines. I just hopes it goes into remission. How are you doing anyway? I was doing good with the intramax, but it seems to be not doing anything for me now. I was feeling so good a few weeks ago and now I’ve been feeling quite dizzy all the time again. I just can’t understand why it was helping so much before and now I’ve had a setback for about 2 weeks or so with no sign of getting any better. Soooo confusing. That stuff brought me closer to normal than I’ve been since my dizziness started. I’m still taking it in hopes that it’ll bring me there again. Hoping for the best but expecting much of the same now. I just don’t know what to do now. Maybe I’ll start Nort again and give it a proper trial or maybe try verapamil. That’s one I haven’t tried yet. Or maybe I just keep trying the intramax longer. I don’t know. What do you think I should do at this point? I’m kind of lost.
I really feel like I have some kind of permanent damage to the right inner ear and I’ll forever be off balance. Even if my migraine went into remission I wonder if my inner ear is just damaged to the point that it wouldn’t matter and I’ll still be dizzy, migraine or no migraine. Although I do pass all balance tests. But personally I think that my right ear is done for. Sounds depressing but at this point I really should stop hoping for anything good to happen because it gets me excited and I bring myself up so high just to fall down hard when something doesn’t work out like I was hoping. Like my first trial with nort, peri and now the intramax that is failing me now.
I was so happy and excited just a few weeks ago and made the mistake of posting my most recent success here without waiting a little longer, now I look like such a fool cause it’s all been downhill since then and I’m feeling shitty again. I just jumped the gun and I shouldn’t have. Sorry for rambling on.
Greg, don’t feel bad. We’ve all been there. All you’ve done is to honestly report your experienc and feelings. Nothing wrong with at all. That’s what this forum is here for. No experience is ever wasted - both poster and readers will learn something from what is written. Learning to live with MAV and getting a handle on its twists and turns, let alone knowing what to do next or how to interpret all its contradictions is enough to challenge anyone, so give yourself some slack.
Be philosophical - you tried something, you thought it had worked, unfortunately it seems not to have done after all, no shame in that, so let it go. Credit to you for at least trying. You win some you lose some. Of course I understand how you must be feeling now and I’m not able to be too much help as to what you do next - meds are not my thing - but until you decide on your next course of action, try to be gentler with yourself, take it easy and concentarte on what you know does work for most - a good diet, good sleep patterns, as little stress as possible, maybe gentle exercise. And I’m sure very soon, you’ll feel more upbeat about the next step.
It’s peaks and troughs with MAV Greg. Sometimes there’s not much time between the two, at other times there can be weeks, months or even years of relative normality with no symptoms. What I have learnt over the years is that things come and go, ebb and flow, so it’s fairy safe to tell yourself that tomorrow will be different, hopefully better.
Wishing you all the best…
thanks, that helps a lot. Meds aren’t really my thing either. I mean I’ve had MAV for 1 1/2 years now and have only tried 2 meds only because I get to a point where I just can’t take this dizziness anymore and I give in. But I may be putting it wrongly when I say I shouldn’t hope to get better. It’s not that I have no hope at all. But it’s more of an accepting what I have and not to get discouraged anymore when things don’t work. Just to keep trying to make symptoms lesser and not to expect 100% full recovery anymore. I feel like I get close sometimes then bam. And if something does work in the future, I’ll take that as a bonus. Thanks again!
Yes, I understand where you’re coming from. I was so totally against meds and FEARFUL of them, too. But getting worn down day in and day out, my anxiety and depression over it creeping up…I finally succumbed. I’m glad I did because no amount of good clean migraine living was helping. Nor was any other type of “healing” procedures, from chiro, to accupuncture, to energy work, meditation, yoga etc…I gave it a long go. Many people on this board might think i am pro drugs because I post a lot about them…not true. I just know in the end what worked for me. I still hate that I have to take them to feel well. I just felt that my only options were to live a half life (if that), or try the meds. I finally tried it for my family more than myself, because I felt I was failing them. Now I’m a lot better, but not 100%, and I fear I will never be. I also worry the meds will poop out on me. It’s not easy.
So when I say try another med, it’s not without a heavy heart that I suggest it…
Whether it’s Verapamil or NOri, you will kow when you’re ready to get back on that wagon. I wish the INtramax was your lucky charm, but it is probably just a good healthy vitamin supplement. I would keep taking it because it’s full of lots of things we probably don’t get in an average diet.
thanks. I just hope this thing doesn’t progress and get worse on me. I know I won’t mind trying some meds as much as I used to, but I have been trying to do it without them for the most part. We’ll see. I’m sure I’ll let everyone know if I’m going to try a med. Thanks again for your support.
Hi Greg, I, for one really appreciate your including forum viewers in your process of trying to figure this whole MAV thing out. I can’t help, but think that you were on to something when you had such a vast improvement in your symptoms once getting on that supplement Intramax. I don’t think it was just a coincident or just a placebo effect. The change was too dramatic. What is interesting about that supplement is that it has everything in there, but the kitchen sink— everything from anti-parasitic, anti-fungal to digestive enzymes. They are all in small amounts, less than in regular supplements, but I am wondering if there isn’t some clue in there for you. These are just speculations, but I read a while back that one of the reasons for migraines is that there is a buildup of calcium and sodium within the cells due to an energy production deficit. The brain cells have difficulty pushing these ions back out of their interiors, thus leading to the hyper-excitability in the cells. Why the energy deficit is occurring is anybody’s guess. It could be a genetic time bomb set off by poor digestion, allergies, hormone imbalance, a latent bug or parasite of some kind, or scarring and chronic inflammation somewhere along the vestibular apparatus. Maybe your supplement was giving your cells a temporary boost in energy, so that the whole process of electrical activity in your brain was working more efficiently with less of the frenetic rapid firing. Just a thought. Hope you return to your former “Intramax glory” soon!
Sorry to hear that you’ve had a set back, but I also want to echo the statements of being easy on yourself. You tried something and was hoping for it to work, and there is no shame in that at all!! I’m like Kelley, I don’t like drugs, but I tried a lot to get this all to stop, and drugs have been the only thing to work for me.
I have two young boys and I can’t afford to go back to how I was 2.5 years ago when this all started for me. I’ve come to the realization that I may be on meds for the rest of my life, and while I really don’t like it, I REALLY don’t want to go back to how I felt when this all came crashing down on me.
I hope you find some relief soon Greg, and until then, be good to yourself, you are trying your best!!
I just hope for all of us that there comes a day that we “grow out” of this MAV craziness!!! :lol:
My name is Roxie and this is my first post. HAVE TO thank Greg for the ‘info’; what you wrote made extra sense to me! It took 1.5 years and many doc appointments before I was diagnosed with Meniere’s and MAV. The doc told me to think of the MAV as migraine/vasospasm in my ear pressing on nerves without a headache. The year after my diagnosis I called my frequent off and on ‘dizzy’ (mostly on) Meniere’s. And in my PollyAnna way, knew it would just take time and all go away and I’d be fine! WRONG!
Last month I had another ‘acute attack’ of Meniere’s (I believe I’ve only had 4 of these attacks in the last 2.5 years) and became very clear that there is indeed a difference between the two diagnoses! And this might sound a bit crazy but when the Meniere’s hits I know the ‘general pattern’ it takes for me…sudden, BOOM, out of nowhere, vertigo and stumbling so bad I think I’m going down accompanied by start raving fear and heart pounding in my chest that lasts max 3-4 minutes followed by 45 minutes to an hour of sitting or lying down before I will try walking again. Then, still a little off balance for the next 3-4 days.
The MAV on the other hand feels more ‘chronic’…it’s what I feel more often than not on a daily basis. High humidity and sudden barometric pressure changes even trigger the off-balance and dizzy. (For the first year, I thought I was going crazy and maybe what I really needed was a Psychiatrist!) At this stage I’m pretty clear it’s affected by sugar and salt (which I still go wild on every once in a while knowing full well what’s gonna happen…). I’ve reduced caffeine intake to 1cup/day and on the days I have to go to work, take Medlizine. That helps (does not totally get rid of ‘off-balance’) but makes me very drowsy. Also take Rx ‘water pill’ for high blood pressure and that makes significant difference in the fullness feeling in my ear.
I’ve seen in the Success Stories about Verapamil (beta-blocker) working for a lot of folks in terms of reducing the dizzy, off-balance, brain fog, confusion, etc
Any experience, strength or hope with that? It’s really, really good for me to hear other folks talking about this MAV and in turn putting in words how I feel!
Thanx to you all…Roxie
To Greg and Kelly and Brenda from Roxie
Me too…what is it about not wanting to take medicine? I even fought taking Meclizine for the first two years! Now I’m finally ready to try some beta-blockers. Figure that can’t hurt too much because I have some high BP that I’ve been addressing with Rx water pill and diet changes. My doc says that ‘we could get aggressive’ and add a high BP med to get it really down and figure what if the Verapamil would do that AND help the MAV? I might finally be willing…maybe? And from the sounds of it, it might take more than one try to get a med that works… Thanx you three!
Really sorry to hear you’ve not been feeling so great again. I really love Kelley’s post. I think we’ve all been at a stage where we have wanted to avoid taking meds (except Victoria :lol: ). The GREAT news is that you did have a remission and were running 5 km etc. No reason you won’t get that again. And no reason to think you’d get worse if you’ve already been feeling better.
Baloh makes a strong point in his interview that this condition can wax and wane for no reason whatsoever. Intramax probably did not affect the migraine much, given what we know about general VMS and migraine but no harm in keeping your nutrient levels at optimal levels and def staying with B2, CoQ10 and magnesium.
Any idea what your next move will be at the mo?
Right now, I’m not really sure what I’m going to dive into next. For the moment I’m going to just stay active and move about as best I can. Do some exercise, keep the water levels up. I don’t know if this is appropriate here but, I have quite the sexual drive right now for some reason and I’m having a lot of fun with that at the moment, and I know if I start nort again it’ll take that away. So lately I’ve been wanting to go back to Nort cause I think it’ll be a good med for me as it did seem to help last year (even though it didn’t take me to 100%)but at the same time, I’d rather have some sex. The wife and I are trying for another child too, so maybe when she gets pregnant, I’ll jump on Nort.
But right now, I’m having too much fun and don’t want to change anything quite yet. Surprisingly I do notice that when my sex drive is up, I feel better-less dizzy and just more energetic. Maybe it’s because when I’m feeling horned up, my minds basically only on trying to get laid and I forget about the dizziness :lol: .