I only had a couple of these acute episodes in my 20ās and always recovered and felt normal the rest of the time, but now in my late 30ās I have chronic everyday symptoms of vertigo, photophobia and general not quite right disequilibrium feeling, sometimes a headache but not that often more the vestibular symptoms.
I think your mother may struggle to differentiate until her symptoms settle a bit. Whilst my acute attacks start suddenly and all-in. They donāt gradually work to a crescendo. Virtually all the symptoms kick in together all at once Iāve always been able to distinguish an increased ferocity in the everyday 24/7 vestibular symptoms from an acute attack because, since the attack duration extended to eight days, they have always knocked my balance out completely - an obvious clue. However now on meds with reduced symptom intensity I couldnāt be so certain. However this latest episode of increased intensity in July, I have designated an attack because I was really off my food and feeling grumpy and irritable days before, not my norm at all, shivery, slightly light sensitivity and I experienced very brief bits of vertigo/visual vertigo which, the way things are going, seem to be becoming my āsafety auraā - an indication that ā Itās on its way - time to get to that safe placeā. So after more than fifteen years perhaps Iām now beginning to see all this predrome/postdrome stuff that years ago quite fascinated me about the migraineurs with whom I worked. So maybe for me the āassociatedā bit of the Migraine Associated Vertigo diagnosis has at last found the migraine with which to become associated. Trust me to get it backwards. Helen
After my lovely attack yesterday, Iāve entered the just as lovely postdrome phase. Ew my stomach is all I have to say. How long does yours typically last? I feel like mine varies from days to weeks then I get a week off and then another attack (thanks lady hormones ).
My pattern went from episodic to 24/7 to 7-10 days of complete incapacitation followed by about the same of much reduced symptoms to lately running at about 80-95% most of the time.
Hooray for the 95%. Thatās good. By the way, is that your pup?
Metformin is surprising me all the time. I just adjusted the brightness of my screen. Iāve had it at the lowest setting for two years. Today, that seems really dim. There was a time I looked at it on the darkest possible setting with sunglasses on, then indoor Theraspecs, now just naked eyes. Not too bad.
And no, not my pup. Sheās more like a spirit animal. I always wanted to have a cooler avatar, but in the end Iām just sort of a scruffy labradoodle.
This is my pup - a 9 year old Pug-a-Poo named Izzy.
The metformin is intriguing me, really is. Iāll see what my doc says next time I see her.
Your pup is adorable.
I had to drag that little monster out of bed this morning to go outside. Weāre under flood warnings here in the Seattle area. Weāre supposed to get 2 inches of rain today and lazy bones dog wanted to sleep thru the only dry period forecasted for the next week.
Iām one of the long timers. I was diagnosed with PCOS in my early 20ās (about 25 years ago). Iāve had MAV symptoms the whole time. My first hospital visit for a brain stem aura came when I was maybe 24. I had a grand mal (tonic clonic) seizure in 2006.
This is my third stint at high doses of Metformin. Iām at 2000 mg/day. Thatās the PCOS max dose. Iāve only been at max for a couple of weeks. Itās not an easy drug, though itās not as bad as the others Iāve tried (triptans, topirimate, amitriptyline, effexor, nitroglycerin, propranolol and a smattering of rescue drugs including meclizine, compazine and fioricet).
My first round was 21-22 years ago to treat primarily infertility. It took long enough that when I eventually got pregnant it was a surprise. Weād long given up. That was 18 years ago. I quit metformin during the pregnancy.
The second round was 12 years ago. I was looking to treat Metabolic Syndrome and obesity. I gave it up when my weight decreased to still obese but better and my labs dropped out of the danger zone for Metabolic Syndrome. I found I could maintain with a low carb diet.
This time around is all MAV related. Amitriptyline, Effexor and Propranolol gave me 35 pounds of extra blubber I didnāt need on an already PCOS chubby frame. My BP soared. Iām firmly back in the Metabolic Syndrome camp. 6-8 weeks in to metformin, I havenāt shifted the weight but have been really surprised at the MAV effects.
I havenāt needed my Cefaly in a month. It was daily. I have had just one afternoon crash and Iām pretty sure I could have worked thru it. I was cycling with 7-10 days of MAV light (which is still enough to send most people to bed) and then 7-10 days of being incapacitated almost completely. That stopped cold. I noticed my rescue meds kit hasnāt come out of the cabinet in weeks, which is new and good.
Lately Iām reliably clear headed maybe 90% of the time. Iām much less dizzy. Photosensitivity is way down as is motion intolerance. Iām not where I think I can go back to my prior busy professional life in an office with 40-60 hour weeks, but I am starting to think maybe I could get back to 30 hours. I own my own firm, so itās scalable and I can work from home. Thereās just enough residual dizziness and fatigue to give me pause. Iām waiting to see where it goes. Iāve felt worse than this and maintained a high stress full time plus job before. Iām wiser now.
Iām starting to think metformin was treating MAV for years and I didnāt know it. Iām thinking always slightly nauseous, slightly dizzy and never straying too far from a bathroom might be worth it. At this point I honestly donāt know if Iām regularly feeling MAV or just metformin side effects. Iām definitely going to stick to the metformin and I donāt have any plans for trying any more migraine prophylactics.
Emily
Wow, you have been through it. I really feel for you. My PCOS is mild. Some hair issues and regularity in my cycle, but still a pain being a female and losing hair. Itās not fun. The slight dizziness/nausea could be a prolonged side effect of a high dose metformin. Definitely possible. I have Sumatriptan, I havenāt used it. I canāt catch my onset of symptoms in time because they keep changing. Such a pain in the butt.
And youāre in Seattle. Nice, minus the rain part. Iām in Ohio near the Great Lakes. Had lake effect snow squalls yesterday and itās quite blustery and cold today. Hoping the snow melts before I take my trip north to see the doc. And dogs love to pick the worst times for everything I swear haha.
There are four basic PCOS presentations (phenotypes) ranging from mild to severe. Iām on the severe end. Thereās a thread here from last month or so with a link to an article that suggests researchers are starting to think of Alzheimerās as Diabetes Type 3. MAV is so obviously a metabolic disorder to me. Using metformin to treat it makes a lot of sense.
Yeah, it sure seems that way. All this stuff is interconnected. Where is the link they havenāt found yet? I shouldāve gone into scientific research, Iām telling you. Would love to find cures for these things.
I often think of how proud my college organic chemistry teacher would be of me now.
Dr. Grove, I know you gifted me that D- so I could graduate. Thank you. I have a better understanding now of biochemistry than I ever would have guessed possible.
Haha maybe ought to look him up and tell him whatās up.