I have a question.

Hello. I am new here. I started to have grand mal seizures only while I am sleeping starting 6 years ago in 2009. I had all the tests done, CT Scan, MRI, and EEG. All the tests came back negative showing no seizure activity. I was put on Dilantin 100 mg 2xaday. The minute I started taking this seizure med., it caused me to be sick every day and throw up every day. It was like I had a stomach flu 5-20 times a month. But the med. stopped the seizures I had while sleeping. Then because of insurance from work, the med was changed to Phenytoin 100 mg 2xaday. This med also caused me to be sick every day with stomach flu like symptoms. Then one week I was throwing up for 5 days straight. I went to see another dr. He put me on Tegretol XR 1 tab every 12 hours. I took that med for a week. I was going to get a refill, and then I started to realize this med was making me angry and mean. I found out a rare but serious side effect of this med is rage and anger. So I decided to get off it and go back on the Phenytoin. I took the med. for a year and a half. Then I started to notice I was losing my memory. I could not remember things like my aunt's last name or my cell phone number. I found out a side effect of seizure meds is memory loss. I could not live with that, so I slowly weaned myself off my seizure med over a 3 month period. Right now I take no seizure meds. for my seizures. I still have them, I have 1 maybe 2 a month, still only while I am sleeping. Dr.s have not been able to find out WHY I have seizures. There is no seizure disorder or epilepsy in my family. Last year I went to see a dr. who diagnosed me with grand mal seizures based on what my boyfriend told him about my seizures I have while I am sleeping. My boyfriend wakes up whenever I have seizures during sleep and when he turns on the light, he sees me stopping breathing and my face and lips turning blue. Also the meds the dr. prescribed me for my seizures were for grand mal seizures, and the meds stopped the seizures. Well on another dr. visit, this same dr. now thinks my seizures are Psychosomatic seizures. I went home and looked up info. on this seizure type, and I can honestly say this dr. is WRONG in his diagnosis. People who have Psychosomatic seizures can have the seizures while awake or asleep. They have them around people. They move their head from side to side. They cry or laugh during the seizure. Their eyes are tightly closed. They bite the tip of their tongue. When I have my seizures only while sleeping, my boyfriend witnesses them. He says my body gets really tight and rigid, then I start to seize. My eyes are open wide and blinking rapidly. The black pupils are really large and big as well. My face and lips are blue and I stop breathing. I always bite the right side of my tongue during my seizure. My legs are really sore after the seizure and I have a bad headache and I am very nauseated. Since I started to have seizures I have headaches 5-20 times a month. The headaches hurt above my eyes and down the bridge of my nose. I also get this sharp pain on the left side of my head 2 to 3 times a month between seizures. I know the headaches and the pain in my head are connected to my seizures. When I was a child, I had a wood tick on me two times. But I don't know if the ticks had Lyme disease. I never had any tests done to test for it. I looked at a list on the Net about the side effects of Lyme disease, and I have many of the symptoms. So I don't know if I do have Lyme disease. The next time I go to the dr. I will have the dr. do that test for it. So what does every one think? Thank you for your time.

Ramge, I am sorry to hear that you have to live with these seizures. People with Lyme do sometimes suffer from seizures. Can this be the reason why you suffer from them? It could be. It can also be something else such as mold, a virus, a parasite or something else.

You mention that there were other items on the list that you matched, do you mind sharing with us what they were? It will give us a better idea of the kind of infection that might be affecting you.

By the way, there are over 200 strains of Lyme and Lyme tests only test for one. If you are infected, it is possible for the test to come back negative and still have Lyme, so don't rely too much on the test.

It is a good thing that you are doing your homework because it will give you the knowledge to find the right path to follow. If it is indeed Lyme, this forum will be very helpful in helping you deal with it while you get better.

My daughter has epilepsy and I have studied seizures for years. I have a lot of insight into what is going wrong with you but it probably needs to go through an email. Send me an email and we'll talk about what direction you need to go. I'm also a pharmacist and could give you some direction with meds as well.