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8 months of unexplained fits - please help

Sat, 03/14/2020 - 21:08
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


Thank you so much for the

Submitted by raydot93 on Mon, 2020-03-16 - 12:51
Thank you so much for the reply. I will do what you have suggested. Thank you also for the link to the epilepsy imitators, that is very helpful. This info plus the number and links you've provided have helped me a lot. I appreciate all the info that this foundation has provided either through its articles or forums, even if I don't have epilepsy I have learned a lot about fits and seizure-like episodes in general.

Hi Rachel. I definitely

Submitted by Patriotrehab on Mon, 2020-03-16 - 20:56
Hi Rachel. I definitely understand your frustration and lack of trust with doctors because my epilepsy started as a result of medical negligence. Without consulting with your psychiatrist as another professional who has reviewed your records and examined you, it’s impossible for me to direct you adequately about what to do in the meantime. However, based on my experience as a person with epilepsy and my experience as a certified rehabilitation counselor (an additional credential that I hold along with my clinical social work license), I would suggest that you begin talking with your psychiatrist about their willingness to help you apply for disability if you are not showing improvement in treatment. Getting approved for disability can be hard for some people, but if you do lose your job and cannot work and the medical evidence supports that you are not benefiting from treatment and unlikely to improve within a year, you may qualify. There are programs after you are on disability to help you return to work. You may even want to talk to your state vocational rehabilitation office now to see if they can help you maintain your current job before you lose it. 

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