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Hemiplegic Migraines, POTS, and potential Epilepsy?

So for the past two years I have experienced episodes that are near-fainting. I have been in the hospital four times for them, about 7 weeks in total. Lots of ER visits, too.

It started really badly back in February of 2014. I experienced an episode of dizziness where my limbs tingled, my heart raced, I got really weak and could not move from the chair I was in. I was on Skype with my SO and he said that he could see my face get really tired and flushed before it happened, and I couldn't talk to him once it started. I kind of slumped into my chair and got really dizzy, I guess. Afterwards, I got extremely tired and fell asleep on the couch.

I continued to have episodes like that and was hospitalized because of POTS and these episodes. In the hospital, I confused the doctors with my episodes.
The one episode I can describe fully happened like this, and most happen exactly like this.
I felt off, like something was wrong. My heart started to race, and the room started to "pulse" around me, then my chest and limbs got tight. I felt like I was going to pass out, like I wasn't in the room with my body. I felt dizzy and like my head and heart were going to just stop or explode. I was really weak and could not form words properly, my sentences were staggered and slow. At times I could yell out words, but it was always in a panic like "help". My breathing got really fast, and I couldn't slow it. Near the middle I began to shake, like I had been out in the cold. Violent shivering that I couldn't stop. It lasted about 10 minutes, then afterwards I was really weak and dizzy. I wanted a popsicle, but fell asleep while eating it. The nurse had to shake me awake and take it from me. I slept for a few hours then woke up feeling a lot better.

Most of these episodes happened the same way, with the extreme weakness and fatigue right after.

I was diagnosed with multiple things, but never tested with EEG or anything. I was tested for adrenaline disorders, pheochromocytoma, amongst others. But nothing came up. No MS, no anything on an MRI. Normal heart 100%, barring the tachycardia.

The reason I am asking about these, is because I was recently diagnosed with hemiplegic migraine that is most likely familial hemiplegic migraine, as my mother gets similar headaches. I personally got severe stroke-like symptoms. As I was reading up, I found out that complex partial seizures can happen with this migraine disorder.

I would like to know if anyone has experience with these and could shed some light on whether they think these "episodes" could be seizures?
2 Responses
Avatar universal
It could definitely be migraine. Have you tried any good migraine meds?
SNRI drugs are quite good both for migraine and POTS so that might be worth a try. Usually pretty hard side effects though. But other migraine meds might work too.
Avatar universal
I am currently on two medications used to treat migraine because of the POTS, yeah.

I have another question, I have been having a restless but weak feeling on my left side after the migraine, like my muscles have to twitch but are too fatigued to. Does anyone have experience with that feeling? Is it still migraine?
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