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MAV and THEN classic migraine develops?


#1

Hi All-
I’d greatly appreciate some input here. All of my experience with this condition started with dizziness and then headaches dispersed here and there, sometimes going away for months at a time then coming back having a few a week for a few weeks in a row. But they have run their course, so to speak, either going away after about 48 hours or less, or getting reduced pain or stopped with NSAIDs or sleep.

LAST NIGHT, however, I had a headache, 2nd worst pain ever, for about 9 hours then got a shower. When I got out I had a great bit of dizziness, which is normal for showers for me sometimes, and I remember feeling frustrated but not anxious.

I then got really dizzy, sweaty, nauseated really bad (got up to grab a Tums as my ginger mints were doing nothing), breathing hard, and overall just felt “weird.” At first I thought it was a panic attack…but then after trying to relax and with time, 1 hr later my breathing returned to normal and my head pain just “melted” away. I was then able to go to bed, feeling exhausted, but felt really “strange” still in bed. I can’t describe it, maybe an all over body numbness/sensitivity, like a bubble was around me? This AM I still feel “weird” and a little nauseated but knock on wood the pain has stayed away. I realize most migraine sufferers would be elated that the pain just vanished, but I’d rather not have the nausea and all the weird symptoms that came with that experience.

Is that how a classic/normal/episodic migraine ends for most “regular” migraine sufferers? I’ve never had such an episodic experience and I have no idea what I just went through! It could have been a panic attack too, but would a panic attack have just “melted” the head pain away??

Any insight on what may have happened to be last night would be greatly appreciated!!! Right now I’m terrified of my next headache.


#2

Not sure what happened to you, but something you said jumped out… That you sometimes get dizzy after showers. My daughter who is 14 started having symptoms after hot showers. We also noticed her pulse was elevated. Took her to Dr, who referred her to cardiologist. Heart was normal but she has dysautonomia, specifically POTS. I’m not at all trying to say u have that… But ck it out online, see if your symptoms fit. She is to take cool showers, drink more water, consume salt. She also suffers migraines.


#3

Not related but FWIW…Dr.S mentioned a sign of recovery is migraines with zero dizziness and after a long time you should just be left with classic migraines with zero vestibular symptoms.


#4

Classic migraine would be welcome at this point.


#5

Whoa… I’ve never seen this mentioned before. This is VERY interesting. I would love to know if you’ve also found any reference to this? Or if other Dr’s have noted thus? The reason I ask is that when I started estrogen to try to help things, I got my first classic migraine with aura that I hadn’t had in years. My Dr and I took that as a bad sign and discontinued estrogen. Now I’m wondering…


#6

I am (hopefully) a long way down the recovery road (no more vertigo for example, finally!), and also to got my first a ‘normal’ migraine the other day. In my case no pain, just the visual disturbance.


#7

Did Dr. S. say this to you, or did you see it somewhere in writing? If so, do you remember where? This is the first time I’ve seen a statement like this. I don’t recall seeing a similar statement in any of the articles that I’ve read about vestibular migraine.


#8

That statement makes sense. Compensation and stabilisation to the point where allostatic load drops but not quite as low as when you started out so you are still susceptible.

Though, why would it stop there?


#9

Hi Anna, I am in the US, seeing Dr.S would be a stretch. I read this on the appointment notes from a VEDA ambassador.


#10

Ha, ha, that’s what I thought, but I thought that maybe you had previously been in the UK. :slight_smile:


#11

I’ve read that the type of MAV that starts in childhood with abdominal migraine and headaches, and then disappears usually for years, then to return as headache-free dizziness often after n years returns as straight headache without the dizzies but that seemed its pattern and not as a result of treatment.


#12

So then the rest of us are out of luck on hoping to get to ‘just’ classic migraine if we were ok as kids. :confused: I’d be happy to get to episodic migraine with or without headache and/or aura, though I’d prefer to never have another brainstem aura in my life. Even when you know what’s coming and in what order, that experience is rattling every time. If a bad MAV day is a hurricane surge, that is a tsunami.


#13

Please don’t take on so and feel upset. I didn’t read anything neither positive nor negative about a final outcome for sufferers of classic migraine just that sometimes those who had headaches etc in childhood and who then had a long break from any sort of migraine were more likely to be the ones where it would come back as vertigo but that eventually, in some cases, it settles back to be classic migraines. A pattern which certainly made me think “hormones’.


#14

Helen,

Don’t worry. I’m not upset. I honestly don’t think my MAV is hormone related. I’m sure it’s a component, but it’s just too 24/7 and was too linearly progressive over too many years to make me think hormones. I’ve found no detectable patterns with respect to cycles, though I admit that’s a lot harder to track since the hysterectomy. I kept my ovaries. My hormones test peri-menopausal, same as they have for years. I’ve had MAV symptoms since my 20s. I do think MAV has major metabolic and endocrine components.

I became a lot happier when I accepted I could live with it for the duration. If it gets better, great. If not, then it’s a feature of me that I will work with.

Thanks, Emily


#15

Word !


#16

Did he say anything about the prognosis for the tinnitus element?


#17

No mention of tinnitus in the piece I read.


#18

Flutters, can you describe your brainstem auras? The Neuro calls some of my attacks basilar migraine, and the aura for me is tinnitus (can vary with both low/high tones, mild hearing reduction, dizziness, jelly legs like seasick on ship, trouble finding words, and sometimes tingling in face.


#19

Suppose it depends on what tinnitus really is. Do the medical folks really know or is it, like MAV, conjecture.
If it’s a vestibular symptom, it should go. If not guess it stays.

Had tinnitus for what seems like ever but don’t know anything about it. Checked out the Vestibular.Org website. Very interesting. Perhaps, as forum mediator (slave?) you might want to mark up their tinnitus page as well on ‘keysites’.

Really fascinating. Apparently incidence of hearing loss and tinnitus (the two seem to go together) is very high in certain Aborigine communities but it doesn’t cause them distress because of their positive response to it. Just goes to show positivity pays. They believe that if you get tinnitus it means somebody is saying nice things about you. What a lovely thought.


#20

Haha. Yes that’s a lovely thought!

Those pages are Wiki’s. Be my guest.