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MAV and THEN classic migraine develops?


@napagirl So sorry I get so behind on these posts. Many days I have blurred vision and can’t participate much. Yes I do have tachycardia when standing for sure, I guess the doctors I’ve seen have said POTS was blood pressure related. I have been checked by a cardiologist and wore a 2 week heart monitor patch, and she was okay with the results and said everything is normal. However, I am housebound and sedentary so a lot of that time was spent sitting down, although I was doing daily walks back then. I’m guessing mine is from deconditioning but who’s to say.

Most of the time the pain is on the back of my head, base of the skull and lately higher up on the back of the head too. More on the left side than right but sometimes entire base. Then it quickly spreads to around my entire left eye. Sometimes after hours of headache also the top of my head/scalp but that’s not as frequent.


@Jess09 sorry for delay. I haven’t been on in awhile. Fwiw, POTS (postural orthostatic tachycardia syndrome) does not have to involve hypotension upon standing. Some have this, but some do not. All have tachycardia at times, upon changing to an upright position, after hot showers, etc. There are different subset types of pots that respond better to different meds. My daughter has it. She was diagnosed by a pediatric cardiologist who also specializes in POTS, and he gave me an informational packet on all of this. Not saying that you have this, just clarifying.

Have you had an MRI on your cervical spine in the neck? I’m asking because I have had head neck shoulder pain for many years. I was told fibromyalgia. My migraines have always been left sided. My tinnitus left sided, face pain, etc etc. My left tmj was blamed, as well as migraine. I recently started seeing an upper cervical chiropractor who helped me tremendously. Thing is, the adjustments don’t last or hold, and the pain comes back. The time between improvement has shortened, so I asked my Neuro for neck mri. I got results last week, and it turns out that I have severe multilevel facet degeneration with nerve compression/stenosis. All on the left side! She was surprised, as I am only 50. Also said that all to most of my symptoms including dizziness could be coming from this. I am being referred to spine Dr who will hopefully be able to do injections, or I may need surgery she said. I had planned to post an update of all of this after that appt. I’m hoping that he can help without surgery. I’ve been having the left sided facial pain with stuffy nose, eye twitching, brain fog, head pressure, tinnitus, disequilibrium, imbalance for almost 6yrs now. Always told vestibular migraine and fibromyalgia. In hoping this may be my answer…finally.


Good luck. It’s a relief to be able to definitively label it, but it’s also a frightening thing you’re facing.


I do hope it is your answer at last. It seems alot of MAVers have recently discovered some other underlying condition which may well prove to be their answer. Their answer to why they have migraine and all these associated symptoms. Might rather prove the theory that MAV truly is a bucket diagnosis anybody with such unexplained symptoms gets chucked into to clear the decks so to speak. I’m sure migraine exists and migraine-associated dizziness too. Don’t doubt it but I’ve thought more and more since joining there must be something else behind this most particularly in the non-responders. As @flutters says it’s quite something to have to face but maybe a diagnosis can lead to a proven remedy which long-term might just be better in swimming around in the never-ending murky waters of the MAV puddle. All the very best with your ongoing treatment. I’m sure everybody’s routing for you and looking forward to your next update. Helen


Thanks @flutters. My Neuro seems to think injections are reasonable in my case- we’ll see. The last thing I want is surgery!

@Onandon03… I agree with you. I do believe in migraines and migraine related dizziness. But I also think it should respond to treatment. I also have been told that issues in the neck can trigger actual migraine activity, so it seems to go hand in hand. But when these things keep hanging on, or go away and come back with no obvious reason, I suppose it makes the most sense to investigate further. The thing that’s ALWAYS bothered me about my case, is how all my symptoms are on the left. With migraine being a neurological disorder, I’d expect a more global presentation, at least occasionally. I even asked my Dr’s how could fibromyalgia be all on the left!!! Crazy. Will update in new thread after seeing spine specialist.


I said a prayer for you. :heart: