8 months ago I woke up after attending wedding and had what I can only describe as a conscious seizure: I remained awake but the muscles in my stomach started spasming, I started grunting and drooling, my arms and legs shook and kicked, and my eyes alternately closed tight or opened. I thought it was just a weird incident. Later that day I went on a walk and my legs went out under me, my eyes closed and I couldn't get them open for about 10 min. Decided not to go to ER. About a week later I had a similar incident. Seemed to be precipitated by tingling in hands and bad pain in chest. No anxiety, no racing thoughts that might otherwise indicate a panic disorder.
Over the next few months I start to develop cognitive problems - memory gets worse, I drool a lot, I get intermittent "wiggles" in my hands, chest, and head, and my speaking is affected. Fits still continue. I have started to see a doctor who goes through the process of referring me to cardiologist and neurologist. I have a bad fit and go to ER, CT comes back normal. Go to cardiologist, EKG and echo come back normal. Go to neurologist who sets me up for a 1 hour EEG. I'm sleep deprived and during the hyperventilation I get a small fit - same feeling with stomach contracting, legs kicking, grunting, drooling, and strange shock like sensation behind eyes. I am conscious and able to respond during it. They capture it on video, EEG is normal and it is suggested I have PNES. Before leaving the EEG technician tells me that I am doing too much yoga and I have been possessed by demons -- WTF??
I see the neuro who tells me definitively I have PNES. I say we have only met twice and he has not mentioned anything about the other symptoms. I say I really don't think that it is purely psychogenic as I have noticed triggers and none of them seem to be dependent on mental state - I have no history of trauma and haven't had problems with anxiety or depression for some time. He tells me to get a second opinion. I spend a lot of money to see a psychiatrist who tells me most of the symptoms I'm presenting seem neurological. I try a couple antidepressants and antianxiety meds to no effect. MRI is ordered and it comes back normal. Eventually she puts me on a minute dose of lamictal (25 mg) which seems to help with a lot with some problems- drooling, memory, and balance but when I try to increase I get massive mood swings. Fits still continue.
Here are the triggers I have noticed:
-Any continued manipulation of diaphragm where the spasms happen: deep breathing, laughing too much, projecting voice
-Physical activity - lifting (worst trigger), walking, standing for too long, sex
-Deep relaxation: meditation, waking up and falling asleep
-Extended concentration: trying to multitask or think with shapes and numbers, speaking in other languages
After each fit I feel seriously disoriented. I see yellow spots and little "flashes" during the day before and after they occur (afaik you don't see spots AFTER a seizure), ophthalmologist says eyes are normal. Just tired all the time.
I am seeing a new neuro who ordered a CFS but it has been delayed to to virus outbreak. I'm also going in for psychological testing although the clinical psychologist I spoke to also says she thinks it is neurological. Any insight would be appreciated, my life has been put on hold for 8 months and I'm constantly vigilant about having fits, especially out in public.
Thank you in advance