Haven't posted in a while; I've been doing pretty well, but ran into a blip again around the 21st of November, which took me a couple weeks to crawl out from under. This seems to happen to me periodically throughout this whole ordeal (2 years now), so I'm doing some poking around and have been discussing it with hbep a bit. I think I may be onto a MAV issue for me ultimately.
I'm writing to let some of the oldies but goodies know (crazylab, willsmom, Scott, Subs, scant5). This is a new development for me, and I'm also hoping that by posting I can help someone else who may be feeling the same. Kathy, especially you. Didn't you say you had headaches too? Since you were ultimately undiagnosed, I'm wondering about you now too.
I have about a 15-year history of hormonal migraines, and my wise ENT (you won't often hear those two words used together ) even asked me about my headaches right up front when I first saw him with massive brain fog, because he knew there was a connection or at least that there was continuing study going on in that area. My new GP also just asked me 3 weeks ago how my headaches were when I told her I'd had a relapse of the dizzies. She said dizzyness was sometimes an aura for migraine, and low and behold, the very next day after I had the dizzy spell I got a headache. So now I'm on this trail. . .
Appears through my research that people with migraines have about a 50% higher chance than others of developing some type of inner ear problem. Possibly has something to do with the vasospasms that happen with migraines (Scott, since you're the scientist here, could you define "vasospasm" for me??) With me it ended up being BPPV, and now instead of thinking this was some fluke that just happened to me, I'm thinking the BPPV was a result of the migraine irritation that had been going on for years. It sort of explains why I was able to compensate from the BPPV damage after about a year, but that I kept experiencing these relapses every 2-3 months. Just when I'd think I was joining Subs on the 100% bench, some fog would hit or some trampoline walk would ensue, well, you get the picture. Anyway, because of its cyclical nature, I'm just thinking it's got to be related to the headaches, which are cyclical entirely because they are related to hormonal fluctuations.
I had even been taking birth control pills nonstop to counter the headache that would always come if I'd stop during the placebo week, but decided to stop taking the pills all together at the end of October. Then whammo, in November the day before I started my period and got a headache, the dizzies hit like I'd never really experienced them before. By that I mean that before they were just related to BPPV and happened when I turned my head in a certain way. Now, it was just a spacey dizzy feeling for what appeared to be no apparent reason.
Anyway, long, long story and I apologize for being redundant for those of you who already know about all these connections between BPPV and MAV. I'm in uncharted territory on this one.
Anyone else had these experiences???
Subs, I also think it may have something to do with those weird sensations I have in my legs that I asked you about a few months back. Sometimes I have them independently, but more often than not they accompany these relapses. Also, the weird eye flicking when I'm trying to concentrate on something. I can't imagine it's related to anything else, because otherwise I'm fine.
Treefarmer:
Yes, I am a big time sufferer of Migraines. I get them so often, I can't really say they are hormonal. I have had Migraines for about 20 years. I also can't say when I get a migraine that I get more unbalanced. But I will say that when I was initially hit with this, I was just finishing up with an intense bout of headaches for about 1 month. They seem to be a daily occurance with me in the spring when things are just starting to grow and also in the fall when the leaves are falling and we haven't had a killing frost yet. I was put on zyrtec to see if this would help alleviate some of the headaches but did not notice any difference. I can almost be guaranteed a migraine when there is a big atmosphere change.
When I was told by a neurotologist that he felt is was MAV....I just blew him off because it just wasn't the diagnosis I wanted to hear. Now after about another year of being on these boards and reading all the info on MAV....it certainly could be a possibility. I am on Nortiptyline and I don't feel it really helps to much. I gave some serious consideration to taking Sandomigran, but am leary of the side affects. Also, it just never seems to be the right time to test a new drug. I have also reached my 2 year mark and although I experience many 100% days I still get periods of just not being right.
You mention BirthControl pills and oddly enough I was prescribed these about 7 months ago because I am getting old and needed to straighten out my system. It took 3 different types before I wasn't experiences excruciating headaches just before I got my period. Coincidental or not, I did seem to notice some improvement with my balance after I started taking the B.C. Pills.
Like I said, it could be coincidental....because who really knows for sure.
I had seen an advertisement on these boards for a natural Migraine treatment and of course I read up on it and it does mention how important it is to have your hormonal levels in sinc. I didn't purchase their miracle potion but did feel it made sense to be hormonaly balanced. I don't know how old you are but I am 43 right now and would imagine by now that my hormones are going a little bonkers. I would love to find something that would minimize the amount of migraines that I get, but I also do not want to deal with unpleasant side effects. I know that I continue to get better because I continue to want to do more and more with my life. When I am having a particularly off week and question why I feel so unbalanced I just look at what I can do now compared to even 6 months ago. For instance....we have a floor made from an old wooden silo and it is unfinished so the only way to clean it is with a bristle brush and scrub it as if I were back in the 1800's. That was not a care nor a thought about one year ago but I scrubbed that floor a couple weeks ago and sweated my butt off but it felt so good just to be able to do it. Yipeeeeee, I can scrub my floor. Anyway, if you have any other questions, feel free.....................
Hi treefarmer,
I've been wondering about this because I too have those nasty monthly migraines. It surely must all be connected but it is so maddeningly vague when you try to explain it. The only migraine diagnosis I got was from an ER physician who based his diagnosis on a few questions he asked me (which was about 2 years ago.) And then this ear thing started with me a few months ago, first the dizziness and then the ear pain which at first I didn't even recognize as an earache; it felt much like my usual migraine, same side. I guess I should push for a CT scan or MRI to find out if there is something strange in my brain, but it sure would be frustrating or maybe a relief to put it all down to hormones! And the eye thing seems to be what bothers me most lately, motion of driving or even watching television. Maybe if I just cut off my whole head I'd feel better?...Thanks for your post, I've been reading all I can on MAV.
God Bless,
Elisabeth
....ran into a blip again around the 21st of November, which took me a couple weeks to crawl out from under....
Hi Terrie...really sorry to hear about this. I wasn't aware you were hit with another round of this stuff again. Not good at all. Do you think you have managed to pull out of it quickly though? Are you back to where you were or not quite?...just relentless this garbage!
Quote:
...possibly has something to do with the vasospasms that happen with migraines (Scott, since you're the scientist here, could you define "vasospasm" for me??)..
A vasospasm occurs (so they think) when there is a sudden lack of nitric oxide (NO) in that part of the vessel. NO production in the vessel causes relaxation in the smooth muscle surrounding it normally. The topic usually comes up when the med people discuss aneurysms and strokes but hadn't heard it in reference to a migraine but don't doubt such an occurence would bring on or be part of a migraine headache. Was the headache you had that occurred with the latest dizziness an actual migraine? You mentioned headache so wasn't sure - the two are different are they not? I've never had a migraine as people describe just headaches that an aspirin or two usually kills so don't know the difference.
Good to hear from you Scant - know what you mean about the joy of being able to clean your floor. Apologies this will be long winded, but I'm sure Terri's post will be so helpful to people, I thought I'd chuck in my headache/ MAV diagnosis experience.
I wanted to chip in here re your question Scott about headaches. A lot of the recent work done on MAV, but also just pure migraine, points to a headache spectrum. Namely that many of the headaches that do not fall in to the typical classification of migraine - one sided - preceeded by aura - are indeed migraine. The best description of this is in Buchollz's book, 'Heal Your Headache. I think I am a good example of this. For the first yr and a half at least of this junk, headaches weren't such a big problem. Although along with 24/7 unremitting dizziness and vertigo, I did experience lots of migranous symptoms - increases and decreases in hearing, periods of increased tinnitus - fullness in my ears - light sensitivity - but not the classic migraine headaches. For a period of time I thought there was something wrong with a partially impacted wisdom tooth I have, as occasionally it would give me hellish pain - I checked it out, it's fine - no decay - now realise it was probably migrainous pain - which can travel to your teeth/jaw. Anyway, later on I developed headaches - real head pounders, but again not classic one sided migraine pain. The point - really late on in the day - where it became obvious I must be experiencing migrainous activity, was when I developed true migrainous auraus - scinitillating scotomas - once a crazy space ship type object flying around in my right eye for five minutes - the second time, lighting flashes in front of my eyes. This only happened over two yrs in to this whole ordeal. That, combined with a vast improvement in my dizziness, which then devolved in to a recovery/attack pattern, where I experience about a week to ten days of vertigo and dizziness around my period firmed up a probable MAV diagnosis. The fact that I could now see how my menstrual cycle acted as a trigger for the dizziness made the presence of migrainous activity more obvious. When I was dizzy 24/7 this was harder to ascertain, although I did always get worse around my period even when my dizziness was 24/7.
One other pertinent point is that I had a prior history of facial pain. A number of yrs ago I went through about 2 yrs of recurrent hellish facial pain in and around my sinuses. I also experienced vasomotor rhinitis, inflammation inside my nose not due to allergy. The ENTs (as usual) were completely baffled by me. My sinus X ray checked out fine - they were perfectly healthy. One ENT even accused me of exaggerating the pain. He's the same horrible piece of work who told me this time round I definitely didn't have an inner ear disorder or migraine. I lived off pain killers and nasal sprays trying to get the pain under control. Anyway, when I got ill with this, I read a lot on migraine, and was amazed to read that non typical manifestations of migraine could be vasomotor rhinitis - during a migraine, inflammatory agents are released which can cause swelling in your nose, and also sinus pain not due to an infection in the sinuses. I realised I had almost certainly had a 2 yr period of migraine attacks - undiagnosed, which explained the excruciating severity of the pain I experienced. I also previously experienced a two week period of spaceyness, that went as suddenly as it came, and also another 2 ish week period of mild dizzy spells.
The one other piece of the jigsaw is that I was diagnosed during this stint of illness with tmjd - or, more precisely, myofacial pain. I clench my teeth whilst sleeping, causing muscular spasm in and around my jaw, face and ears. MPD is believed to be a migraine trigger. I'm afraid I don't know the science, but Scott mentioned muscular contractions (or something like that) around the veins during a vasospasm - (forgive my bad grasp of science) this might explain why tmjd (or MPD) are linked to migraine. I've also read that this is why some people are treated with intra muscular magnesium for migraine. A deficiency in magnesium can cause muscular spasm.
Anyway, I am in a horrible phase at the moment. At the end of my period I got hit again, it's been a week now. Thought I'd kicked it a couple of day ago, but it's still with me with a vengeance. I've also had a head pounding headache for 2 days. Guessing, but the severity of the attack this time is probably down to the drugs I'm taking for my digestive problems. H2 blockers (stomach acid suppressors) are a known migraine trigger - and the other drug I take, domperidone, also lists headaches as a side effect. It's a classic rock/hard place scenario. I desperately need the drugs for my stomach but am equally desperate about being horribly dizzy again with a headache from hell. Haven't quite worked out that conundrum yet.
Apologies that this is so long , but when I first got ill, it was posts like Terri's, Scant's etc and the one I've just written, which outline possible connections etc...that were so helpful in finding out info and making possible connections to my own situation. Of course I will probably never know for sure what's going on. I half expect to get diagnosed with thryoid probs or Lyme disease one day, and realise I was wrong about all of this and there was another explanation altogether. Or alternatively it's possible I did get hit with a virus which caused VN, which then triggered a dormant migraine problem. Whatever, at the moment my gut tells me the MAV diagnosis is probably the correct one.
It's also worth mentioning once again, for the record, that I am at least the sixth person I know of diagnosed with MAV who experienced unremitting dizziness. The basic info that MAV follows an attack - remission pattern is nonsense. It's as true as the standard info given out on Lab - which is that it only lasts for 3 wks to 3 months - which we all know is rubbish. I do feel a lot of people don't get the MAV diagnosis that might cure them until v. late in the day because of this misconception. Unfortunately the first neurotologist I saw had bought in to this theory. I spoke to him about MAV over 2 yrs ago - he told me it didn't cause 24/7 dizziness. He was quite young and, I'm guessing, inexperienced. The next 2 I saw (I'm in a neurotology deparment where you often get to see different people when you go) were really good. They debunked this theory entirely and said there is no typical pattern - with vestibular disorders there are very few definitives - it's a question of listening carefully to someone's history and trying things out to see if they work.
) even asked me about my headaches right up front when I first saw him with massive brain fog, because he knew there was a connection or at least that there was continuing study going on in that area. My new GP also just asked me 3 weeks ago how my headaches were when I told her I'd had a relapse of the dizzies. She said dizzyness was sometimes an aura for migraine, and low and behold, the very next day after I had the dizzy spell I got a headache. So now I'm on this trail. . .
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