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MAV and THEN classic migraine develops?


#21

Your experience certainly sounds like mine. I get minor variations of the following with every migraine but rarely the whole experience (thank God).

The day or two before a major migraine, my neck will become immobile and I’ll have extremely blurry vision with blind spots. My shoulders and back will feel like I have the flu.

The day of it starts with an aura that rolls thru each of my cortexes in sequence. It starts visually, often with scintillating scotoma, but always with halos, refractions, stars, visual snow and colored dots that vibrate. The room slowly revolves clockwise on a vertical axis at the edge of my vision. Sometimes it looks like birds are flitting by. My eyes hurt from the back forward. Every light, sound, motion or odor feels like an attack. My skin hurts. Most of those symptoms remain for the duration and through postdrome, if you can call it a postdrome rather than chronic MAV after a few days.

Almost always this phase is accompanied by visual vertigo, motion sickness, diarrhea and violent nausea. All of these will stay elevated beyond my baseline for days, provided the whole thing doesn’t start up again.

My vision partially clears and the world stops heaving, then my ears stuff up and everything sounds both super loud and very far away at the same time. Sometimes with tinnitus, though I always have that, so it’s less remarkable. Sounds are distorted and I have trouble understanding words.

I start feeling like I’m being pulled out of myself as my hands, shoulders, face and tongue go numb. I have absolutely no idea where my body is in space. I feel like an astronaut on the end of a tether.

Then I lose the ability to think. Sort of. I’m aware that I can’t think. I can’t put sentences together in my head. I can’t verbalize what’s happening, even to myself. I feel trapped and claustrophobic, as if I was stuck inside my own head. That is a point of raw, animal panic. Language is impossible, even to scream a silent prayer. Experience hasn’t dulled that response.

I lose time for a while.

The first coherent thought comes with the onset of another round of violent vertigo, nausea and then, usually, pain.

Last time it was that bad, the cycle repeated itself for five days before I reported to the ER. They knocked the pain down to tolerable, but the MAV symptoms never left. That was September. I’ve had many a migraine with aura since then, but none as severe or prolonged.


#22

Wow. That sounds kinda like a hemiplegic migraine. 5 days of that sounds horrible. I experience some of that, but mine only lasts a short time- usually close to an hour. Then I also get longer lasting, milder dizziness that still interferes with my life. I also have fibromyalgia, diagnosed when I was 20ish. I’m now 50, and it’s back worse than ever. Oftentimes it will be after a long fibro flare that the dizziness starts up. And migraine. My neck is a mess!


#23

The five days wasn’t all at that top level. It repeated the cycle three times, twice in two days with MAV ramped to 12 in between. It was definitely not confined to an hour like most aura are supposed to be per the official definitions. I am pretty certain I don’t have hemiplegic migraine because the pain is always moderate. The pain didn’t get severe until I’d been fighting it for almost a week and was simply exhausted. I’m not sure how many times I passed out in the ER. The dizziness became 24/7 at that point and remains that way, unless I’m medicated. If mine is in fact basilar aura, it certainly sounds like yours are, too. It has to do with how many cortexes are affected, I think.


#24

Flutters, do they know why our migraines go basilar after years of normal ones?

My mom had stroke symptoms pretty bad, no headache or pain. Numbness tingling loss of use of one arm, dysphagia. She went to ER and was told migraine. Neuro told her hemiplegic migraine. We also both have those white matter hyperintensities on brain mri- common with aura migraines. We also both have fibromyalgia, positive ANA tests, but no further positive tests or signs of autoimmune disease. Steroids help us both. I am so suspicious of an autoimmune source considering all of this.


#25

I was tested for all the autoimmune. Except for the hypothyroidism I knew about, they came back negative. I also have PCOS, which is metabolic and hormonal, so who knows?

And no, I don’t know why, it went that way for me, too. @Manatee @GetBetter Vigs and Anna, thoughts for @napagirl?

Thanks, Emily


#26

I’m sorry but I don’t know. I think we’ve heard a lot of people on here say that their symptoms have “morphed” over time. It makes sense that hormones could play a role. If migraine is affected by the chemicals in the brain, and if those chemical levels are affected by hormones… well, we females know that our hormone levels have changed throughout our lives. But they change for men, too, so hormones might play a role with some men.

And then there are all sorts of things in our environment today and who knows how they’re affecting us… Parabens in lotions and cosmetics. The ingredients in some sunscreens. The nanoparticles in some sunscreens and cosmetics. BPA in the liners of canned goods. Plastics and nanoparticles in our drinking water. And so on…


#27

My guess is brainstem is involved with VM and my migraines start in the base of the skull as well. I don’t know if this is enough to call my migraine basilar.


#28

Gosh, Anna, go scaring me out of my shower! :wink:


#29

Personally, I think that primitive part of the brain can be implicated in much of MAV.


#30

Assume you are familiar with Dr Silver’s presentation ‘non headache presentations of migraine’, elsewhere on this site. He presented it to UK fibromyalgia. Sure you must be, but just in case.


#31

No, but I will look for it. I’ve been off this site for 3yrs- was in remission. Just recently back. Thanks for that info.


#32

Sorry you had to come back. We’re glad to have you.


#33

First, thank you ALL for your help and input on my thread. Sorry I was MIA for a bit, I had some laptop overheating issues, migraine issues, then this forum didn’t fully load for me for 2 days but only on my laptop. I read along with the responses on my phone but can’t stand typing on my phone as it increases my dizziness 10 fold (at least!)

@napagirl Thank you for your thoughts about the showering. I have since had another similar attack out of the shower but it wasn’t as bad. A few doctors have tested me for POTS but just by having me lay down then stand up fast and checking changes in blood pressure. The blood pressure remained the same and so no doctor ever suspected POTS. I’ve never gotten the tilt table test. I do know my heart rate gets elevated when I stand up and do anything, especially for the length of a shower, as I have been housebound for a long time and my muscles are de-conditioned. My heart rate goes up when I do just about anything standing or walking, and my guess is that unless there is underlying POTS happening that it’s a combination of the hot water and increased amount of time standing with poorly conditioned muscles. I am working on making the water cooler but find, especially when I have headaches, that I raise the temperature without thinking about it in efforts to thwart the head and neck pain. Showers used to help that pain, but lately they haven’t.

@GetBetter Wow, I wish this were a sign of recovery. I do think it has become a sign of yet more ever changing symptoms for me. After this attack, I have gotten 3 more “episodic” migraine headache attacks with more “regular” migraine like symptoms. The dizziness has remained the same and constant except the first day or 2 of a bad headache the dizziness now seems to increase to almost intolerable levels, whereas before when I got headaches I used to not be as dizzy. Maybe this is a step in the recovery direction but i will still feel dizziness in my case because my vestibular system won’t compensate while I’m still on the Xanax. Just a thought. I asked my doctor about the compensation thing but the question was ignored via the messaging system, will have to tackle it again in an appointment.

@flutters One would think so, but out of the past 18 days I have had 10 days of headaches and have felt dizzy the entire time too. Honestly these headache attacks are scaring me more than the dizziness. I just got over one that lasted 4 days, the longest yet. They aren’t responding to over the counter pain meds anymore. I think living in fear of the next bad painful headache attack could be almost worse than constant dizziness, especially since I’ve been getting headaches so frequently.

@Onandon03 I never had migraines as a child, nor did I have any classic migraine episodes until recently. The dizziness started first, headaches off and on which I’m not sure were even migraines at first. Now I know I’ve had migraines at least in the past few years. I have also heard about the pattern you mentioned though, it’s interesting.


#34

@jess09- my daughter at age 13 was diagnosed with POTS by a cardiologist. It was the rapid heart rate upon standing, not blood pressure change, that sealed her diagnosis. Then she wore a holter monitor for 24hrs that tracked her tachycardia. I think drop in bp on standing is just orthostatic hypotension. POTS is tachycardia after standing or other triggers (like hot showers).

That said, a POTS like syndrome can come on from deconditioning alone. If someone becomes deconditioned from any reason, they can get those same symptoms…


#35

Jess where is the pain with your migraine attacks?


#36

I found the link here for this presentation, but it no longer works. Would you have an idea where I could find it?


#37

Try Www.ukfibromyalgia.com. You might also appreciate www.thewaltoncentre.nhs.uk.
Check the net. Meanwhile I suspect our ‘magician’, aka @turnitaround, will probably jump in and fix the problem for us with the link to this presentation.


#38

Helen, that’s tricky, without knowing which presentation you are referring to. Can you view the presentation in a browser? If so, can you copy the link from the address bar and paste into your post?


#39

This was the link on here:

http://ukfibromyalgia.com/conditions-mistaken-for-fm/migraine.html

I had to put quotes as it was redirecting to main site.


#40

Forget it… I found it via the main site. Getting ready to read…