Anyone headache-less?, & docs don't believe MAV?

Specific Illnesses & Conditions VM/MAV
1

Anyone else NOT get headaches, or only get insignificant ones?

I KNOW I’m a migraineur because of past visual auras, and after having spent many years seeing ENT and neurology with NO DIAGNOSIS OF ANYTHING, no specific ear or neurological problem found, everything ruled out, and having done a lot of my own reading and connecting with people on dizziness forums, I am convinced my dizziness is due to migraine.

But try getting any doctor to believe that! I brought it up at one point or another with probably every GP and specialist I saw. They would not say anything in reply, or they’d say they didn’t think migraine was causing my dizziness. (Even the otoneurologist who studied under Baloh said this.) But of course they didn’t say what they DID think was causing it.

EVERYTHING else has been ruled out, and the only tentative diagnoses I ever got–perilymph fistula and MS–were sooner or later ruled out, too. NO OTHER CAUSE has ever been given for my dizziness. I’ve tried various classes of meds (prednisone, diuretics, anti-anxiety drugs, vestibular suppressants, etc.) and nothing has worked, except that stimulant-type meds (Provigil, Ritalin, and now Strattera) have helped my concentration greatly, although not the dizziness itself.

And yet… STILL I cannot get any doctor to consider that I have MAV. The otoneurologist even said that for migraine, “we treat the pain, not the dizziness.” I cannot get this taken seriously without having headaches–which I don’t. Just sometimes a slight one, but mostly just a pressure-y, slightly headachy sensation in the front of my head.

Anyone else have this problem?

I recently read somewhere on this board that Dr. Hain does phone consults, and I thought I might try that. If I could get SOME expert to say that migraine might be the cause of my dizziness, maybe the local docs would believe me!?

(My GP did, at my persistent request, prescribe nortriptyline today–see my other thread–but I know he was still unconvinced.)

I feel VERY LUCKY not to have headaches, but it’s kind of like all those poor dizzy people I’ve “met” over the years who cannot get their dizziness investigated seriously, are told it’s just anxiety, etc.; I believe that only because I was “lucky” enough to have a hearing loss was I taken seriously (at least initially) on the dizziness. (I was never taken very seriously on the neuro stuff, though). The doctors wanna see something dramatic like that.

Thoughts? Any other non-headache migraineurs out there?

Nancy

2

HI
I never had a headache in my life…when I got dizzy, my neuro said it was migraine…I thought he was nuts…as it turns out, I do have the mechanism, since I got 2 subsequent auras while going through the agony of trying to figure out wth was wrong with me!!
No family history…
no headaches…
trying to convince ME was the challenge! I still wonder sometimes…stupid auras …lol
Kelley

3

Kelley-- If you got the auras, you got migraine, I’m pretty darn sure!

What are your auras like? I had 3 instances only, in 1999-2000, when perimenopause hit hard, but I got the classic one–the little blank spot which turned into a block-letter “C” filled with flashing facets of light which slowly moved upward and outward as it dissipated over half an hour.

My sister has the EXACT same aura (as I found out when I breathlessly reported mine to her). My kids both described theirs differently, but all involved flashing lights. My mother and 3 of my 4 siblings also have a history of migraine to a greater or lesser extent.

Nancy

4

I DID have very frequent headaches, maybe almost daily at times, when I was in junior high or high school, but not terribly bad ones. I never told anyone about them because my mom got so many headaches, I assumed it was NORMAL to have headaches!

In my twenties, I don’t remember having headaches, but started having a few dizzy spells (first one a few months after my first child was born), and later on a very, very slowly increasing dizzy-wooziness always present and worsened by movement such as walking or exercise.

At 42 the auras and worse dizziness hit.

I’m sure all these were connected with hormone shifts (adolescence, giving birth, then perimenopause).

5

Hi Nancy,
I’ve been a 24/7 dizzy MAVVer for almost 3 years now, and I have never had to take a pain-killer for a headache! The most I started getting was mild headaches and a kind of ‘tingling’ which would signify a ramping up of the MAV activity. I actually decided to part company with a very well respected specilaist, when he doubted migraine as being the cause, and I (and my VRT physio) became convinced that migraine was in fact the culprit!

After 2 1/4 years with this, I finally had my first (and only!!) visual aura, in January this year whilst at work - a blind spot that grew and grew until I couldn’t read my computer monitor properly - completly freaked me out, because I thought it might be a Topamax side-effect! But it finally confirmed the MAV that I had suspected all along…
Tony.

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Nancy - I completely understand your frustrations. After too many futile trips to the ENT, I went to a neurologist yesterday… who told me that “only children get MAV”… well then how does that account for the HUNDREDS of adults on message boards on the Internet who seem to have it?

My neuro thinks that my dizziness is causing me to be stressed which is causing the migraines -__- But my dizziness is completely separate from my headaches too. And everyone from my doctor to my husband and my parents think I am doing “too much research on the internet”, but if I don’t take charge of my own health… then who will?!

7

Suki,
I agree about getting an education about this stuff…doctors know very little, and they certainly don’t know how it FEELS to have this condition. I have been able to help other people, as well as myself, by the research I’ve done on my own. My doctors are always impressed when I can speak with them from the point of knowledge…my internist just shakes her head and says talk to the other doctors, because she doesn’t know what the heck I’m talking about.
Nancy,
I never had headaches in my whole life, but this all happened at 42 (the peri age?) and I started getting morning trembling (waking with my insides trembling) and daily headaches…mostly behind my eyes. That all went away with the medications, and I am happy they are gone. I still get it every once in a while (trembling) and it reminds me of a very bad time in my life.
The ami is what took away the headaches, but I’m guessing it was the serotonin that did it, since the other meds I’ve taken since then have that effect as well.
Stress and low sero…a sure fire way to exacerbate migraine.
My auras were a blind spot in the middle of my vision, with the flashing lights coming down from right to left. And Yes, my Dr. (Dr. Hain) said yep, you have the mechanism for migraine, when I told him about the auras. I’ve only had 2 and they have lasted about 15 minutes each. freaky stuff!
Kelley

8

Hi
I never had headaches with my MAV, which I’ve had my entire adult life, until menopause hit. Now, when I have a MAV event the headache starts about 3 days into it making the whole thing even more debilitating, and it takes me much longer to get back on my feet now.

9

I don’t get headaches either - or certainly not the classic migraine type headaches. But I’ve had 4 aura experiences ( “waterfall” where it looks like I’m looking through water) and 3 of the zig zag of flashing lights. Lasts 15-20 mins, never followed by a headache. In spite of all the times I’ve explained this my GP still asks about my headaches. Waterston was fine that it was migraine (v strong maternal family history of migraine traced back at least 3 generations and we have suspicions about the 4th generation as well). I was v lucky in that my country based neuro diagnosed migraine almost straight away based on the aura and the family history. He wasn’t that worried that I didn’t get the headaches, and diagnosed me with vestibular migraine. In fact I think I’m one of the few lucky ones whose first diagnosis is actually migraine, and it only took 3.5 months to get that (2 months was waiting for the neuro appointment :shock: )

Very frustrating for you - I hope you get to see someone who can diagnose you

10

Yes - hardly ever get headache as a migraine symptom.
I am lucky that I was seen by a clue-ey opthamologist at age 14 when I first started getting scintillating scotomas and he correctly diagnosed me with migraine. Frustratingly - even my own family still ask about my ‘headaches’. :roll:

11

I get a headache everyday but it’s the very mild niggling type - have always had them. But never a classic migraine headache. Mum suffers classic migraine horribly but touch wood hasnt had one in a few years.

People always used to comment and say ‘Carrie, you’ve ALWAYS got a headache’ because I always did but I never really thought anymore of it.

Now I feel I’m living one constant 24/7 headache!

Good luck to you.

12

there is plenty of articles that suggest migrane can be silent which i pressume is no pain. I have headaches every day with a migrane or two thrown in. I was told its mav, i also have ear issues, ringing,feedback and nerve dysfunction, my eyes were giigling so i couldnt see for about 5 mins. I saw a few idiots manly gps but you need someone who has an interest in vertigo not just neurologoical probs etc. Ive learnt theres no quick answer and vertigo specialists are few and far misdiagnoses is common…keep pushing some here havent had migrane either so its not far fetched

13

Thanks, everyone, for all the interesting replies. It is quite surprising how many doctors do not know about the migraine-dizziness connection. There is so much that docs DON’T know–have never even heard of–except the super-specialists. For example, when I lost my left-ear hearing suddenly, the first two doctors I saw did not even test my hearing in any way, so it was a month before my hearing loss was diagnosed, when in fact a sudden hearing loss is supposed to be a medical emergency and treated within 24-48 hours! Most doctors just ASSUME they know what is and isn’t wrong with you on the spot, and anything unusual about your case they just dismiss as unimportant.

Tony: despite the freaking-out feeling with that first aura (which I sure got! I panicked!), it IS nice to have that indisputable confirmation that you are a migraineur. :slight_smile:

Suki: isn’t it shocking, and demoralizing, to find out that even a neurologist, who should know better, can make such a statement as “only children get MAV”? I know there is some migraine syndrome called “benign recurrent vertigo of childhood” or something like that, but apparently the neuro assumed that because that’s the only one he ever heard of, that’s all that exists… the assumptions they make are sometimes breathtaking in their arrogance. And you are right, if you don’t do the research, no one else will, and more often than not, you cannot count on your (non-super-specialist) doctors to know or figure out what’s wrong.

Kelley: your morning trembling is weird. I know the auras can differ; my adolescent son described his visual aura as “traveling” from the opposite direction as mine. He also would get the tingling numbness “marching” from his fingers up his arm, on alternate weeks from his headaches. I thought he was imagining things or confused (just like a doctor–LOL!), until one day I read about that exact syndrome on the Internet! I feel a little conflicted about telling doctors (such as my GP) too much of what I’ve learned on the Internet, because most of them tend to be suspicious of it rather than encouraging it, esp. if it’s about something they’ve never heard of. I can understand that suspicion, as there are all sorts of fringe theories, doctors, treatments, etc. out there, but I know MAV and Dr. Hain are mainstream, and I intend to send my GP some links at some point.

SarahAnne: sorry you have got the opposite deal… headaches later in life rather than earlier. But they will probably go away. My mother had awful headaches in midlife, but they disappeared.

Gabrielle: glad you got diagnosed quickly, even without headaches. I don’t think I will get any doctor to diagnose the cause of my dizziness unless maybe I can do it through a phone consult with Hain… there is an otoneurologist here in town, but he dismissed me long ago and did not seem interested in my migraine theory.

Victoria: isn’t it frustrating when you just can’t get things through your family’s heads, no matter how hard you try!? I’ve had that problem with docs, too, regarding muscle strain in my legs/hips when walking–they always ask about my “pain,” and I don’t know how many times I’ve almost shouted back to them, “it’s STRAIN, not PAIN!” They are all focused on pain, pain, pain, as if nothing else could be significant or worth their attention.

Carrie, sorry you have the daily headaches, even if mild ones. I very, very often have just a slight headachy feeling in the front of my head, but it almost never turns into a real headache.

Becd: Did you get an explanation for your ear issues, ringing, etc.? What kind of nerve dysfunction did/do you have, and how was it diagnosed? Just curious… I have had a lot of ear and nerve issues, too.

Thanks again everyone for the replies; glad to know I’m not the only one with doubtful doctors! :slight_smile:

Nancy

14

hi nancy i had vestibular testing, the bang something on my head to check where my eyes go,caloric testing and some other test. They did it after 2 years of chronic vertigo. They cant explain a massive explosion in my ear like a gun went off but thats the ear that has nerve dysfunction. It may have permant damage but interestingly the ringing in that is less than the other ear. Migraine can cause ringing etc in ears, mine is better than it was but i still have it especially i notice when its quite but isnt as loud as it was :?

15

I have no headaches, but my ENT suspects MAV. I had a VNG performed by an audiologist today and she said almost all the MAV patients she has seen have migraine headaches. She said that in their experience, it is rare to see an MAV patient without migraine headache.

16

— Begin quote from “ichbindarren”

I have no headaches, but my ENT suspects MAV. I had a VNG performed by an audiologist today and she said almost all the MAV patients she has seen have migraine headaches. She said that in their experience, it is rare to see an MAV patient without migraine headache.

— End quote

but rare doesn’t mean never, as this forum proves :smiley:

17

I rarely get headaches and they are rarely crippling. 10% of migraineurs get ‘classical’ migraine, which is what I get - aura but no headache.

Let’s just try and get past the headache thing, OK? Migraine does not = headache.

18

hi there victoria, this headache thing is a problem with me and understanding mav, i used to get killer migraine lasting 24 hours only injections would help, havent had this in years. theres a massive jump between migraine v headache. i would say now i have headache 2 aura things maybe??? (just recent weeks) but never in 2 years whilst i had vertigo or before. ive also had close to 2 migranes the whole time but still 24/7 vertigo and i bout of severe ngstamug, daily headaches too :?

19

Just reading this and how I wish I had the headache-less version. I’m currently in a phase of non-stop head pain. Been constant now for 5 weeks waxing and waning. Just driving me bonkers. No idea what the hell has triggered this apart from a slight drop in Paxil (0.5 mg). Hard to believe I’d still be in the shitter after 5 weeks. Neck is not jammed up either. Relentless. GRRRRRRRR :roll:

20

Here’s a paragraph from the e-medicine article on MAV:

“Patients may or may not have a history of concurrent migraine headaches. In fact, most patients have dizziness symptoms during headache-free intervals or even numerous years following their last migraine headache.[8] Some patients with migraine-associated vertigo have never experienced a migraine headache but have a family history of migraine.”

Family history can be a tricky thing: my mother never knew she was a migraineur as she thought she had “sinus headaches” - I had headaches too, and thought I had sinus headaches - but it turns out we were both wrong. I didn’t find out that our headaches were migraines until after she’d passed away and the dizziness started and I began seeing a neurologist.

If someone in your family thinks they have “sinus” headaches, you may in fact have a family history of migraine.