@napagirl So sorry I get so behind on these posts. Many days I have blurred vision and canāt participate much. Yes I do have tachycardia when standing for sure, I guess the doctors Iāve 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. Iām guessing mine is from deconditioning but whoās 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 thatās not as frequent.
@Jess09 sorry for delay. I havenāt 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? Iām 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 donāt 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. Iām hoping that he can help without surgery. Iāve 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 answerā¦finally.
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. Iām sure migraine exists and migraine-associated dizziness too. Donāt doubt it but Iāve thought more and more since joining mvertigo.org there must be something else behind this most particularly in the non-responders. As @flutters says itās 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. Iām sure everybodyās routing for you and looking forward to your next update. Helen
Thanks @flutters. My Neuro seems to think injections are reasonable in my case- weāll see. The last thing I want is surgery!
@Onandon03ā¦ 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 thatās ALWAYS bothered me about my case, is how all my symptoms are on the left. With migraine being a neurological disorder, Iād expect a more global presentation, at least occasionally. I even asked my Drās how could fibromyalgia be all on the left!!! Crazy. Will update in new thread after seeing spine specialist.
@napagirl Thanks for the clarification on POTS. Interesting that it doesnāt have to involve blood pressure changes.
How is it going with your neck? Is that the cause and not MAV? I did have a neck MRI done last year and it was all normal, thankfully. Although sometimes I think finding an actual cause would make things easier for treatment!
Well I just had an epidural steroid injection of C5 and C6 vertebrae last Wed. I had immediate pain relief from the lidocaine, but that wears off, and the steroid is supposed to kick in within 2wks. Fri I had a major migraine/cluster headache along with neck shoulder pain that was worse than baseline. That got better, but still getting weird pains and electric shock feelings. Plus, Iām having the nasty side effects of the steroid itself- sweating, anxiety, and a bit off balance. So Iām keeping fingers crossed that it will work. The 2 days I had of no pain immediately after the injection were absolute heaven. I do believe the neck issue is at least triggering the dizzy migrainesā¦ But no one knows for sure. We shall seeā¦
@napagirl Interesting, I hope you can eventually find relief with it. I have those side effects you mentioned from the steroid frequently just from MAV itself, they are no fun. I know how annoying it is to have someone suggest something for you to try, and I hate to do it, but you mentioned how much the lidocane helped. There are lidocane patches out there, and probably creams too. Have you tried putting them on your neck? I know some are available prescription only but Iām sure there are over the counter products too. I agree with you about the neck issues, I think neck pain can definitely trigger dizziness. I can feel it in my case, a certain type of dizziness/imbalance occurs on days where I have increased neck pain. And today for example, I have bad neck pain that is now creeping up into the back of my head and turning into a headache. Best of luck, I hope this works for you!
@Onandon03 I saw the paper but have too much blurred vision now to take it in properly, but I will look at it later. Thanks for sharing it.
My doctors currently arenāt allowing me to try Propranolol or any beta blocker/calcium channel blocker because my blood pressure is ānormalā and they think itāll make it go too low. I know Iāve read and some headache experts even say the low doses of the BP meds for migraine donāt even touch blood pressure anyway. Itās frustrating.
Sorry, my mistake. I thought you were on Propranolol already. Itās frustrating indeed not to be allowed to even try it. My BP is verging on high but the Propranolol hasnāt reduced it at all. Pulse has dropped however so I cannot go any higher. Perhaps with gene therapy theyāll eventually come up with migraine specific drugs that donāt have these aggravating side effects. Trouble is Many of us will be too old to benefit I fear. They donāt seem to be in any hurry to get started even. Helen
Youād think there would be huge money thrown at research to create effective, easy-to-use migraine drugs. The potential consumer base would be hugeāa giant moneymaker for all involved! Just when capitalism could have come in handy, it disappointsā¦
Well yes, I am sure Iām far from the first person to voice this, but funny how a number of the poorly understood, supposedly āmysteriousā but highly debilitating chronic illnesses are ones that disproportionately affect women: fibromyalgia, migraine, endometriosisā¦ Said w/much respect and gratitude to the loyal and true male migraine co-sufferers of course. But just sayinā.
As a combo platter kind of girl myself (PCOS, TMJD, endometriosis, MAV), I stopped just short of pointing out the capitalist patriarchy. Doesnāt mean I wasnāt thinking it.
And yes, I love and respect all my MAVerick friends. Weāre all in this crappy spot together.
