I've started having some possible seizure-like episodes about 2 months ago, which have occurred in the midst of flare-ups of what I think may be very early rheumatic and/or autoimmune issues, so I've been have been seeing quite a few doctors, including now a neurologist. I have a history of migraines that I've managed to control, until these episodes, but other than that I know NOTHING about neurological issues. So after doing some reading I've realized that what happens to me is similar to myoclonus - my episodes usually involve sudden, brief jerks/spasms of my entire body, and they often occur either as I'm about to fall asleep or as I'm awakening. My question is that everything I read says myoclonus is "normal", but is it always really normal, if it happens very frequently, and if it happens in the context of a certain pattern?
It dawned on me that while I do think I have true myoclonus, jerks that just happen out of nowhere, and that keep me from falling asleep, I also have actual episodes in which I have a pre-seizure like aura, a series of several myoclonic jerks, and then an aftermath in which I ALWAYS have a migraine headache. The thing is, I've never experienced myoclonus before, except until this past year, which also coincides with when I first started developing attacks of inflammation, that preceded all of this other neurological stuff. So I have those, but over the past 2 months I've had about 4 or 5 distinct episodes in which I had some sort of aura: sudden fatigue, weird heat sensation radiating through my body, rapid heartbeat, blurry vision, occasional spots in my right field of vision, and this sensation as though my body needed to shake from the inside. Then I would need to lay down, and my heart would continue to beat fast, my breathing would get really heavy, and then I would have a full body spasm. Then 2 - 3 more spasms. And then it would be over, and my heart rate would go down, my breathing would go back down, and I would feel "normal" again. I would feel a little disoriented, but I wouldn't lose consciousness. And about an hour later, the migraine aura would start and I'd get a migraine headache - after every single episode. I'd sometimes get this after a series of myoclonic jerks, mainly if they really interrupted my sleep - and lately I've been having up to 10 - 15 a night and some nights I can't stay asleep for more than an hour without a Klonopin (which I'm supposed to take for my severe PMDD, but it's the only thing that calms my brain down at night). Again, I just don't get how that is "normal".
I've had one incident that was more like what I consider a true "seizure", but it was so odd because I felt like I was half awake and half asleep! This time I had a lot of visual aura, a hallucination, I couldn't move, and my body did a slow tremor for about 2 minutes. Then I rolled over and went back to sleep. Woke up a little while later with my absolute worst migraine ever. Part of me is still trying to delude myself into believing that was a dream, but I know it wasn't.
The other thing, with ALL of these episodes - the myoclonic jerks and seizure-like episodes - is that they seem to be triggered by hormones. Whenever my hormones are changing, and during the second half of my cycle, are when ALL of these events occur. This is also the time when I get my most severe fatigue, muscle/joint pain, and other symptom flare-ups, in addition to my severe PMDD symptoms - enough to make you hate being a woman.
After my initial visit and exam with the neuro last month, I was scheduled for a sleep study, MRI, sleep-deprived EEG and some kind of doppler study to look at the blood flow around my brain. I was prescribed 50 mg of Topamax a day, because she says that helps both migraines and seizures, so she's hopeful this med can work for me - although I realize this low of dose is NOT going to help any seizure-like activity, but I suppose she could still up the dose at my follow-up appointment in 2 weeks. I've had everything done except the doppler study, but the only thing I know now is that I don't have sleep apnea (which I didn't think I had anyhow) and that my EEG was normal, which was a little disappointing. I haven't heard anything about the MRI, but I'd imagine they would have contacted me if something was horribly wrong.
I know a lot of people with neurological issues have normal EEGs unless you're having a seizure at the time, but I was hoping for something - especially considering these episodes are not what I would normally think of when I think of a seizure. My husband, who witnessed my first episode and had epilepsy as a teenager, is the one who first told me he thought I had a seizure. If he hadn't been there, I don't know what I would have thought happened.
I guess I'm just wanting someone's opinions about this, who knows more about seizures than I do - would you consider these episodes normal? How much should I push with my neurologist towards getting some medication to getting this under control? Or is this something I just have to deal with? The good thing is that I actually like my neurologist and she really seems to listen to me (unlike my rheumatologist) so if I have a reason to be concerned, I think she will listen. I am concerned, but when you read about myoclonus being "normal", I don't know what to think. And the fact that I am having early signs of autoimmune issues (elevated bloodwork indicating inflammation, prolonged anemia, elevated rheumatoid factor) doesn't help either. Sigh.
Thanks for reading!