I’m new to this forum, I stumbled onto it while trying to do some research. All the posts I’ve read are several years old, but seems like a really helpful group of people here. I was hoping someone here might have a similar experience to mine.
In August, I had a really weird “episode” and my husband took me to the ER, convinced I was having a stroke. I could barely stand, my balance was so off (not like the room is spinning, but more like I was on a boat and couldn’t get my feet under me right), my left side went numb (face, arm, leg, etc) so that I couldn’t swallow properly and while I could see out of it, my eye felt numb as well. I was so nauseous I threw up. And I was twitching in my left arm, leg, eye, and lip. And somewhat disoriented, I knew where I was and everything, but had to really concentrate to find simple words. You could practically draw a line down the middle: my right side was perfectly normal. The ER also jumped to the conclusion I had a stroke, and I was given a CT Scan, MRI, and EKG. They brought in a speech therapist to make sure I could breathe and swallow properly, the whole deal. Everything said normal. So, the ER doc said it was probably just a freak migraine (I don’t typically get migraines), probably brought on by stress and it wouldn’t happen again. The majority of the symptoms went away within a couple hours, but the numbness of that episode lasted 2 ½ days.
A week or two went by, and I was fine. I was driving, and had to pull off the road as another of these episodes hit me, and I couldn’t grip the steering wheel or focus, etc. My husband had to get a neighbor to bring him to drive me home. We called my primary care doctor, and she couldn’t make an appointment for me for anything sooner than 3 weeks out. So, we went to Urgent Care. They documented it, and sent me home. When it happened again, we went back to UC, and that doc sent me to Neurology. It took a couple weeks to get in for that appointment, and by then we’re in early October, and the episodes are happening weekly-ish. Some are as bad as that first one, some are milder with just the numbness and loss of balance, and I can work through them. Neurology did a full exam, and she sent me for a whole myriad of tests: MRI/MRA of head and neck with and without contrast, an EEG, and labs with 11 vials of blood drawn (I felt very much like a pin-cushion that day). I got all of that done, and went back to see her last week, and she said everything came back completely normal, except one of the blood tests showed an elevated clotting agent in my blood, but she wants to redo that test at the end of January. By now, the episodes are every day/every other day. We’ve ruled out Stroke, TIA, Seizures, and a whole list of other things I had no idea she was even testing for and she is tentatively calling it a very strange form of migraine.
Now, she has me taking B-2(Riboflavin), B-12, and Nortriptyline (25mg/day for a week, then stepping up to 50mg/day) for migraine plus the baby aspirin for the clotting. The B-2 and B-12 she started me on back in October, and it didn’t ever seem to make a difference one way or the other. I’ve only been on the Nortriptyline for 3 days, so I think it’s too early to say yet whether it works or not,(Still having daily episodes) but I’ve gotten a major headache since I started taking it that just won’t quit. It has made it easier to sleep (I have had a hard time staying asleep at night since these episodes started, as sometimes they happen when I sleep and it wakes me up).
So, not really sure what I’m asking here, except…is there anyone else here that is diagnosed with migraines as strange as this? Even the Neurologist is hesitant with the diagnosis, not just because of the lack of headache, migraines without headache happen, but the amount of time these episodes last-anywhere from 4-5 hours up to 2 or 3 days. And the fact that everything is always left-sided.