Hi there everyone,

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 :D ) 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.

Input anyone??

Cheers,
T

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..................... :D

all the best,
Kathy

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!

...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.

Sure hope you bounce back fast Terrie.

Take care....Scott

Hello there All,

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.

best,

hbep

Hi Terri/Hbep/Scant

Sorry to hear you do not have this junk----behind you!!

Not up on the "MAV" curve but----Looks like the medical types are now recognizing that MAV---is a big player---in the dizziness world----

..."The second major cause for chronic disorders of dizziness involve other disorders of a chronic nature that can manifest their symptoms in the form of vertigo or lightheadedness or imbalance. The two most common of these would be migraine-associated vertigo and a primary anxiety disorder with or without panic.".....

..."Migraine-associated vertigo is becoming increasingly recognized. The vestibular symptoms can take many forms, from vague dizziness to spinning vertigo. The duration of symptoms can also range from brief spells to episodes lasting for days. Headache often does not accompany the dizziness, although a clear history of vascular headache should be present in order to entertain this etiology. Motion sickness susceptibility, food triggers for headache, caffeine-withdrawal headache, relief with sleep, and family history of migraine all suggest the diagnosis of migraine-associated vertigo, though it should remain a diagnosis of exclusion. ".......

From the article/paper in the "sticky" info post

"Chronic Dizziness" David Solomon, MD and Neil T. Shepard, MD(Directory Univ of Penn Balance Center)

Terrie

That article goes on to say:

...." Use of specific medications for disorders related to migraine headache [2, Class III; 3, Class I] is often successful in treating chronic dizziness in patients with vascular headache. The treatment is similar to headache patients in general; a migraine diet should be given to identify triggers, triptans may be effective abortants, and prophylactic agents (beta-blockers, tricyclic antidepressants, and acetazolamide) are usually effective."....

Know from prior posting that Hbep & Scant(it think) are trying that/those medications----are you??

...."I can't imagine it's related to anything else"....

Yep---given the evidence---prob so.

...."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"....

That's pretty pronounced symptom---plus--"15-year history of hormonal migraines"----- sounds convincing to me---be interesting to see what the Doc recommends.

Terrie/Scant/Hbep/CL, etc...

Well----I'm gon'a---sit out here on the 100% bench---continue to pray/keep fingers crossed/burn incense/bow to the sun/chant/smile at passersby(will be careful on that one)---do VRT's(with MEP's)---and wait--for ya---cause I just have a feeling your going to join me(and Scott)!!

Hey Scant---bring your "cycle"---will need a ride---be worn out :cool:

Thanks Subs.

Boy do I want that seat next to you Subs...

Must say this MAV is confusing me somewhat and I cant help but think it is a little over diagnosed - after all there are no tests to prove it? I just think that with me, I want definitive answers - in the tests - as to why I am dizzy. Perhaps I am looking for something I wont get? Eeek.

10 days to go...I pray I get some answers and hope for recovery.

Hugs to all xxx

Hi guys...Here is a great website with lots of useful info on MAV. I guess I should post it with info archive as well.

http://www.emedicine.com/ent/topic727.htm

Elisabeth

Great website..thanks for the link!

Great website..thanks for the link!
It can now be found in the archive (approved by mod1) ! S :cool:

HI Subs,

Thanks for that - re 'smile at passersby(will be careful on that one')'- lol, you really made me smile. And yes, I am taking the drugs - pizotifen - it's v. early days - you taper up the dose - starting low - to avoid side effects - so I won't know if they've done any good until I get a high enough dose in me.

CL - re - Perhaps I am looking for something I won't get.' Based on my and others experience, I do think a definitive diagnosis is an impossibility. Dizzy blonde was diagnosed with VN by LL initially. She showed a deficit in one ear on her tests. After 7 or 8 months VRT she saw a different neurooto at London, who tried her on migraine drugs - she responded very fast and basically got better, which pretty much firmed up her MAV diagnosis. The neurotologist said, if it is migraine, and you're symptomatic, namely there's migrainous activity going on, on the day of the test, you can show a vestibular loss.

As one neurotologist I saw put it to me - they have patients who have visual vertigo, for example - they get dizzier in relation to visual stimulus - shops, crowds, which looks more like VN or lab, but then they respond to migraine drugs. He said that often it's often guess work, what's a more likely diagnosis, and then a try it and see approach. Like you , I am desperate for definite answers, but he basically laid it on the line and told me there aren't any. I think, in the first instance, they will often try VRT, if you don't get better they start trying other things.

Once I'd gone past the 2 yr mark I was actively pushing to try the drugs because I have nothing to lose and everything to gain. They might not work, but without trying I won't know.

Re - overdiagnosis - I only know of 7 people I've seen on this board diagnosed with MAV - 3 have got better on migraine drugs and are no longer on the board - Wowweee tried the drugs, her symptoms improved, but she suffered side effects so came off them. And there are questions marks over Dodologist, Scant and myself. I haven't included Treefarmer in the list as her original diagnosis was BPPV, and she is now exploring the possible connection to migraine. (If I've forgotten any MAVers, apologies) I'd have the opposite concern, I think MAV is under diagnosed and a lot of people needlessly suffer for months before getting the drugs that cure their condition. I think they are only recently wising up to MAV as a diagnosis - I think it's still a diagnosis that many doctors are unaware of - or are fairly ignorant about.

best,

hbep

Hi Hbep.

One thing I do think is the drugs used for MAV are also (like AMI) antidepressants so if people improve, who's to say its because it's MAV or because the antidepressants have speeded up compensation like in the examples of Scott and Will on here?

7 people on here seems a lot to have MAV to me...perhaps it is a recent avenue that specialists have become aware of - I just dont necessarily think response to the drugs equals MAV as the drugs are used for a few things.

Also, I am told that about 20% of people with VN dont actually respond to VRT - so those who dont respond may be that % but not necessarily have MAV?

I think history is important. Perhaps more than test results though I think (like ilia's ) if the tests show vestibular damage and mild hearing loss then this is pretty definitive of labs/VN?

Sorry, I just have a hard time fathoming MAV as a diagnosis - just hope they dont diagnose me with it! I think its perhaps fine if youve had a hisotry of migraines but not if you havent.

As it stands, LL said "absolutely not" when I proposed MAV to her in March - will let you all know!

xxx

Right on guys!! Glad to see everyone come out of the woodwork on this one. I was off having a good weekend at 100% (knock wood), so sorry for the delay in responding here.

Scott, thanks for the definition of vasospasm. Like I mentioned above, I'm back to "normal" now, and maybe my pattern is going to fall like hbep's. I'll wait and see later this month when the timing of my cycle will tell me whether last month was a fluke or not. My deal is that after being on birth control pills for so many years, my body is trying to find its level just now, I'd guess. Maybe the dizziness last month (the first "real" cycle I'd had in years) was just the ironing out of the hormone levels. The dizziness just took me by surprise and hence I started looking at the migraine connection again. We'll see.

Kathy -- I'm 41, so we are pretty close in the whole hormone/age/birth control pills thing. I remember when you posted that you'd been put on them. Your history of migraine would certainly make me think about MAV. Isn't this crap fun? I think what you said about reading about things being better if your hormones are balanced is right on. I mean, why wouldn't that be right? It just seems natural, and like I wrote above to Scott, maybe my whole deal now is just my body working out the kinks after being on BCPs for so darn long (about 20 years). I LOVE your floor cleaning story. Hbep and I have pondered the attitude shift that needs to happen with this stuff, regardless of diagnosis, and that is that perhaps this stuff blips and all is just part of who we are now on some level, and we need to adjust our mode of living/thinking to accept that. I'm glad you're doing well. Are you gearing up for ski season?

Elisabeth -- I'm sure lots of us here have pondered cutting off our heads!! LOL. Also, thanks for the link. I think I've seen it, but I'm going to check it out again.


Hbep -- thanks for including all the great info. It's what I had hoped for in this post (besides a little moral support), namely that people would contribute and inform those who may be feeling the same and frustrated to boot because of lack of info. Your friendship has been a godsend with this stuff. I'm so glad we connected in London . . .

Subs -- glad to hear from you!! do you have snow there in Penn yet? I haven't thought of trying MAV meds yet. I'm just beginning to think about this connection, and as I mentioned above, maybe there's not much to it and my body is just straightening itself out (hormonally-speaking) after all these years on birth control pills. I'm eager to see what happens later this month (and of course hoping it's not a repeat of last month!). I'm doing just fine now, so I'll take it. Love the comments about that much-sought-after bench! I'm sitting there with you today, and am thankful for every day that I get to sit with you. Good ones come and go; it's just the nature of life, 'eh?

CL -- I understand your wanting a definitive answer to this stuff. Don't we all. I think for lots of people it's just a matter of realizing that maybe you won't ever know for sure, and it's a matter of managing your life as best you can. Most of us are still searching for answers and support in those answers, or we probably wouldn't be lurking here so much. As for the MAV meds, I don't know much about them, though I'm thinking if it offers relief for some people then what the heck. Sort of like Scott and his situation. If you realize you can't get a handle on your symptoms and, more importantly, the way you respond to them letting them run amuck with your life, then why not try something to see if it works, because if it does then it can make a world of difference. I think you're right on the history being important part, and my clear 15-year history of migraine (and the fact that 2 docs have asked me about that connection) just made me start to wonder. And that's all I'm doing at this point is just wondering, asking my friends here on the boards for input, and trying to educate myself as best I can. We'll see what happens. Good luck in London next week!! I hope you get your answers.

Thank you thank you thank you everyone!!! You are all THE BEST. I'll keep you posted . . .

T

Maybe if I just cut off my whole head I'd feel better?...T

You and me both, Elisabeth! My standard answer to peopel who ask me how I am is 'fine from the neck down'!

This has been such a useful thread, especially the bit about the sinus and nasal inflammation, which I get a lot. Didn't realise that could be migraine.

Ann

Hi Terri,

Good to hear from you - just got your mail also - let's hope it was just a post pill dizzy spell and things clear up from here on in.

CL, TBH - most of the people I know, including those on this board got better with pizotifen. It's a serotonin antagonist - the opposite of an anti depressant - which increases serotonin, and it's only used to treat migraine, it will do nothing for anxiety or depression. It has no other function or use other than as a migraine suppressant.

I think if Ilia hadn't got well with VRT, they would have looked at her diagnosis again. Even with hearing loss and a vestibular deficit, this doesn't rule out MAV - which can cause both those things. As I said above, the key is the response to treatment.

I basically tend to be thinking along Terri's lines - if, after a long haul with this, and let's face it, over 2 yrs is long, you aren't better, then most people want to try whatever might work. Migraine drugs is one of the only other options aside from VRT. I think most people aren't heavily invested in having a lab or VN diagnosis. Mainly because if it does turn out to be MAV, and you respond to drugs, it's possible to kick this thing entirely. I would recommend any of the 20% of people you mention who don't respond to VRT to try migraine therapy, let's face it, they'd have nothing to lose. What's the alternative - unrelenting symptoms for an indefinite period of time with no cure. I don't know that I have MAV, but I do know I'm not better, and I won't rest until I've tried every avenue to kick this junk.

With regard to what LL says, Dizzyblonde was initially told she definitely had lab by LL, she didn't. Initially the diagnosis is educated guess work, that can change as your ilness progresses and if you don't recover. Had she never tried the migraine drugs she'd probably still be ill.

I hope all goes well for you in London, but I wouldn't close your mind to migraine as a possibility, as it's an avenue you haven't explored yet, and who knows, it could prove to be the solution,

best,

hbep

Hi Hbep - yep I wont close my mind to it but its up to london - their decision really whether they want to try me with it or not - but from my history, MAV does not fit like it does with you and Terri etc.

I did find some research suggesting pizotifen could be used for "light to moderate depression". The conclusion was that "Pizotifen seems to possess certain antidepressive effects".

I find it v disheartening in a way that much of this is guesswork - if thats the case- maybe we should all plump with the average ENT?!!!! Just joking, am being silly, but it does sadden me that I may nt be able to trust any specialist.

To be honest if they diagnose me with Lab next wk - I could drive myself insane coming away and then thinking aghhh maybe theyve got it wrong, maybe it's mav, so I will trust their judgement and go from there. After all, nothing in life is certain but if we had no faith, we wouldn't get anywhere.

Hugs xxxx

Hi ya all,

Wow that al made for very interesting reading, gosh!

I just wanted to add that really it was not VRT that got me better so to speak, it really was just getting mobile again, to put it mildly (no exageration) my dizzies were very disbaling and I would not go out alone mon-fri when my dh was working away. i also had a peculiar pattern of getting better, regressing and so on. I think some how the prego made me really de-comp I just am not sure????? Touch wood I stay as I am! I do remeber lol......LL saying to me that I would also be put onto ami (or similiar) if I did not get better with VRT pretty quickly as sometimes migraines although not the primary cause can interfere with compensation. I dont think that there was any doubt that Labs was my original and fundemental problem, it was not ever MAV. BUT when I have had a migraine attack since this problem then YES it does make me dizzy and in fact that alone can be a the predrome to a migraine.

To add to this my son now 6 also has a MAV varient which causes acute and short vertigo symptoms, he was on Pitzotofen for several months with absolutely NO success. They still insist MAV as a cause but seemingly there really is no other help out there other than - lets wait this thing out.

CL - dont freet about London, I took the decsiion before going that this was gonna be the end of the line in terms of searching for an answer. I think that you should voice your concerns about your fear of misdiagnosis to whom ever u see. Then keep an open mind, get the tests and wait and see what they say. Don't loose any sleep over is it this......or is it that......frankly stress and worry is like giving the dizzies a feeding frenzy. Try to remeber and I am sur they will reiterate this that if the dizzies are not central in nature then they do tend to get better sooner or later, thats the nature of it. For some its a long haul. I also think that they try the meds as a method of ruling out a possible MAV component AND as they told me they DO NOT fully understand why Pizotofen works on this type of a problem, other than the suposition that a suffer had excess levels of seratonin, but again this is not proven. I really pray that you get what you are looking for form London. You know above all else you will be some where thats sees dizzies in their droves, to them its all normal and nothing you say will be anything new. You will get the reasurance and continuing support that to me was undoubtably crucial in relieveing my fear of serious illness (I must be dying...right..I cannot function!) and the fear that I was forever trapped with the dizzies and trampline walk. I left there reasured of my recovery and really believed it would get better! Will be thinking of ya. Ilia xxxx

Thanks Ili - much appreciated...I AM fretting as you have prob guessed! :rolleyes: xxx

Thanks Ili - much appreciated...I AM fretting as you have prob guessed! :rolleyes: xxx

Wow C/L just read Ilia's post/advise " CL - don't fret about London"

---usually don't see that kind of wisdom often ( & from someone so young :cool: ) and when you do it usually comes from one who has been there and back---ought to "frame" that one.

Best advise I think I've seen---on dealing with this junk---you got it together Ilia---good on ya!!

"E" ur up---next

-----you fought to get here---just keep doing your thing---your "dance card" is full-----L/L & her crowd gon'a have this junk "leave the dance floor"--&---"roll it off the floor and out of the building"!

:cool:

Thx subs - you're so very fab :)

xxxx

Oh and Subs - agree with you about Ilia's post - but she is a v wise person -a real gem :)

xxxx

hbep:
I am curious about pizotifen and other migraine drugs like it. I guess my worst fear is that if I ever get a diagnosis of MAV (Which right now from where I sit sounds a lot like what is going on with me) and they prescribe a similar drug for the migraine/dizziness, it will send me into the blackness...since I have always been prone to depression/anxiety (also linked to hormones and aggravated by the ear thing) Before all this ear business even started and I was dealing with the panic stuff several years ago the doc suggested anti-depressant meds but I have always been reluctant to try drugs, especially when it comes to fooling around with brain chem. I never did any drugs in high school because the thought of being out of control terrified me...(what fun could that be?)
Anyway I have always struggled to keep seratonin levels high, especially in the winter since I think the seasonal thing affects me a lot...So, do you have to make a choice between migraine/dizziness relief and anxiety with these drugs? Just curious if anyone might have a perspective on this?

Wow C/L just read Ilia's post/advise " CL - don't fret about London"

---usually don't see that kind of wisdom often ( & from someone so young :cool: ) and when you do it usually comes from one who has been there and back---ought to "frame" that one.

Best advise I think I've seen---on dealing with this junk---you got it together Ilia---good on ya!!

"E" ur up---next

-----you fought to get here---just keep doing your thing---your "dance card" is full-----L/L & her crowd gon'a have this junk "leave the dance floor"--&---"roll it off the floor and out of the building"!

:cool:

Hi Subs ((((hugs)))) bless your heart for being so sweet that made my night!! Thank you, I think we also need to pay homage to both your efforts and constant reassurance when I was suffering and scared, it still remains with me, thank you my friend. :angel:

CL - you know exactly what a tower of strength you are!! and this as subs says ..............is your dance.............go for it girl!! :D

Amen, Ilia!!!

T

hbep:
I am curious about pizotifen and other migraine drugs like it. I guess my worst fear is that if I ever get a diagnosis of MAV (Which right now from where I sit sounds a lot like what is going on with me) and they prescribe a similar drug for the migraine/dizziness, it will send me into the blackness...since I have always been prone to depression/anxiety (also linked to hormones and aggravated by the ear thing) Before all this ear business even started and I was dealing with the panic stuff several years ago the doc suggested anti-depressant meds but I have always been reluctant to try drugs, especially when it comes to fooling around with brain chem. I never did any drugs in high school because the thought of being out of control terrified me...(what fun could that be?)
Anyway I have always struggled to keep seratonin levels high, especially in the winter since I think the seasonal thing affects me a lot...So, do you have to make a choice between migraine/dizziness relief and anxiety with these drugs? Just curious if anyone might have a perspective on this?

Hi - just a quick one here, but i do remeber that the Gp told me that the most common side effects from pizotofen where actually dizzness (like we needed that, weight gain, constipation (sorry TMI), sleepiness,a whopping appetite and occasionally depression. My son had the increase appetite, really sleepy and rather TMI, no actual dizzyness or depression. The sleepiness actually wore off with taking the drug for a while, I guess as your body tolerates it.

I understand your apprehension at taking the drugs, I can really relate at to your comments about fearing being out of control. I guess it may be worth while considering the side effect profile versus the potential benefit of being symptom free. Also if you were to find you reacted to the meds you could just taper them off and stop them.

I too have suffered with aniety issues prior to the onset of the dizzies so again I can really appreciate your concerns on that front. I had some really great CBT and so feel that I have that aspect well under control, it really does not scare me as I know the tricks to cope/control/stop it.

I hope that you get better v soon, Good Luck :)

Amen, Ilia!!!

T

Oops ((hugs))) sorry forgot to mention you! xxxxxx V V glad to read that you had not been on as you are 100% - yeeehaaa. :)