migraines and POTS

[Pistol]

Recently I have heard of several POTS sufferers that initially were diagnosed with silent migraines, my sister being one of them. I am very unfamiliar with this diagnosis and would welcome anyone's experience with this.

Does anyone have this diagnosis? How do the symptoms overlap with POTS symptoms? What is the mechanism behind these attacks? 

I would welcome anyones Input. Thanks in advance!!!!!!

[POTSie78]

My diagnosis of dysautonomia came after I had stroke like symptoms in 2020 and spent 3 days in the hospital.  I had kaleidoscope vision, slurred speech and weakness.  After my vision returned I then had a headache set in.  After getting out of the hospital I was sent to an ophthalmologist who diagnosed me with occular migraines that can occur without pain.  I was told by the ophthalmologist that these are neurological.  I was also told by my PCP that there is recent research that migraines could be TIAs that don't leave permanent marks like usual TIAs.  So to me it sounds like there's various causes. I was also sent to a cardiologist who then sent me to an electrophysiologist that diagnosed me with dysautonomia and then eventually said that I have POTS.  My EP has been treating me with propranolol and Gatorade.  I also take amitryptiline, topirimate, Singulair, loratidine, aspirin and crestor.  I also take imatrex and 800 mg ibuprofen to break my migraines.  My symptoms are not well controlled so my EP implanted a loop recorder becausw i have an arrhythmia and my PCP has me wear compression socks.  I also went to a specialist at Mayo last month but he's not sure I have POTS because he did a poor man's ttt and didn't see the response you usually get with POTS.  However I was being treated for it at the time and have to go back for a hole bunch of their tests off all my meds.  I have bp and hr thats all over the place, presyncope, severe sleep apnea, lots of gi issues and now skin problems and trouble walking. From 5th grade and all the way through high school I actually lost consciousness several times. I have 20+ years of migraines and gi issues since birth.  I don't have much for answers but I am hoping to soon and will keep you posted.

[dancer65]

Yes I have ocular migraine diagnosed at eye hospital which I believe is classed as silent migraine . I loose my vision in one eye , or part of what I would  normally see in one eye . Usually lasts about half an hour if I rest . I also have migraines that lasts for days not found anything that really controls them every time . I take sumatriptan , co codomol or aspirin .

I believe ocular migraine is caused by constriction of blood vessels . 

[CJ65]

@Pistolthis is very interesting. In addition to my regular POTS dizziness I get waves of vertigo lasting a few days at a time. When I mentioned it to my autonomic neurologist on Zoom he said “vestibular migraine” and just like that it was in my chart in my list of diagnoses. I’m so glad you brought this up because I want to know more about migraines with  POTS, too

[Pistol]

@POTSie78 and @dancer65 thank you both for sharing your Input. 

5 hours ago, POTSie78 said:

I don't have much for answers but I am hoping to soon and will keep you posted.

I sincerely hope they will be able to find a solution for you. Best of luck!

 

2 hours ago, dancer65 said:

I believe ocular migraine is caused by constriction of blood vessels .

That would make sense in my sisters case, since HPOTS runs rampant in my family! 

[CDNPortGrl]

Interesting observation and answers too! I had vestibular migraines (most of the time no headache) prior to developing POTS. I was in a permanent postdrome phase that never lifted and very rarely had a migraine. I was told I have migraines though because my mother had them. My mother had the standard - lights off, dark room, style migraines; whereas mine were not that at all.