Hi Carly,

I hope I'm wrong but I'm beginning to wonder if you aren't having complex partial sz. I've had this type of sz. for 37 yrs. I will start to see the colors flashing back and forth in my eyes and I'm totally concsious then the next thing I know I find myself in a different room and I don't remember walking to the room or anything that happened since I had the colors in my eyes. This type of sz. is a hard type to control and many times a person will get up and wander around not realizing what they have done but they will continue to talk to people, and if I am cooking or doing some type of work I will do all of this correctly I just don't remember anything. The best way to explain this type of sz. is a person who went out and had a few drinks and they don't remember anything the next morning when they wake up.
If you are having a rapid heartbeat this can very much connect to possible seizures. You might want to have your Dr. check your heart and make sure you are getting enough blood flow and oxygen in your body. I'm very glad that you didn't go on neurontin that is a dangerous drug for many people. I was on the drug for about 1 yr. and my sz. became very dangerous I would be out of it for 40 min. to 3 hrs. then I found out that the drug co. making this drug has $240 million in lawsuits because the drug has caused people to start having seizures that never had them, the drug increases seizures very bad in many cases, and 72 people took their life because the drug causes severe depression. I saw all of this on NBC DATELINE a few yrs. ago and it was one employee who worked for the drug co. who turned them in for selling this drug illegally by doing off market sales of the drug and knowing it could hurt people. Here's wishing you well and May God Bless You!

Sue

Porkette, the more I read about partials, the more confident I am that this could be whats going on and may have been since I was a child, just exacerbated now for whatever reason, stress probably.

I have read that with simple partial seizures, you remain aware and can have just physical symptoms, like the fingers and toes twitching. Also, how symptoms can arise at night or while asleep and although I haven't had problems recently, I used to frequently have "sleep paralysis" where I'd wake myself up but not be able to move or speak for a few minutes, I could only control my breathing- which my doctor said was normal. But maybe it wasn't. Something could be going on causing me to clench my teeth so badly too- as that has worsened these past few years. I have to pry my jaw open some mornings. My heart doesn't race, but sometimes feels like it's going to beat out of my chest. I get bad "adrenaline dump" in times of stress and get light headed, blurred vision and shake really bad. I hate confrontations because of these and I have to deal with the public all day and get like that when a patient yells at me.

I have been especially moody lately too, with really bad rage. I have been attributing that to stress, but who knows?

I just hope this neuro I'm seeing Monday is very attentive. I don't know that I can wait a few months to see the next guy, and I don't know that my insurance will pay for me to go to the specific epileptologist without an official diagnosis. I'm also a little ticked off that I knew it was weird to see the flashing only with certain colors (what I'm now thinking is an aura) and if this does turn out to be epilepsy, they are going to hear it from me because they should know that that is a symptom and follow up on it, not just dismiss it.

Thanks for all your help and support, without you I wouldn't have even known about photosensitivity seizures. I knew that flashing lights and patterns could cause them, but not colors. I'll keep you posted!

Hi Carly,

One thing you might want to ask the neuro to do is a sleep study on you if you haven't had one done. If you have a sleep disorder like sleep apnea for example this can cause a person to sometimes have a sz. I hope I'm wrong but it sounds like you are having sz. in your sleep that might be waking you up. If you notice a pattern where you have sz. in the morning when you first wake up or when you go to bed these are known as myoclonic sz. Also if you use a cell phone to much it can trigger sz. for some people. I know that I'm cell phone sensitive which means if a few people around me are using cell phone even if they are texting it triggers sz. for me. If you get any warning that you are having any aura or any type of sz. put a cold wash cloth on your face and neck. This will stop the neurons from firing up and lead into a sz. I was in a medical study a couple of yrs. ago and they found out that before I had any sz. my temperature would be higher than normal so I was told to put a cold washcloth on my face and neck each time before the aura started and it stopped many of my sz. You might want to call the Epilepsy Foundation of America they are located in Maryland. There phone number is 1-800-332-1000 they can send you info. on sz. and also let you know if there's any Epileptologist in you area, they do all this for free. You can also ask them questions and they can help you out. Here's wishing You Well and May God Bless You!

Sue

Sue, you are such a godsend. Thank you so much for your help. My appt. is tomorrow and we'll see what the neurologist is thinking, I'll keep you posted.

I know there are good epileptologists at the hospital I'm seeing this doctor at in Philadelphia. I'm going to Thomas Jefferson University Hospital, it's the best in the area. From the doctor I'm seeing's profile, looks like she's more of a migraine specialist, but at least she will be familiar with other doctors within the hospital if I need to see someone else.

Thanks again!

Carly

Hi Carly,

How did things go for you? I hope the Dr. found out what was going on with you. I used to go to a private school not far from Philly back in the late 1970's.
The school was in Berwyn, PA. I loved taking the train to Philly and NYC when I was there. Here's wishing You Well and May God Bless You!

Sue

"Working diagnosis" of Focal Dystonia. Could be focal epilepsy causing the dystonia, she didn't rule that out yet because I have to get an EEG to find that out.

I also have to get an MRI of C-spine to rule out anything going on there, as the EMG showed degenerative changes there. Massive headache after EMG, but what sucks is the EMG couldn't differentiate between the existing nerve damage from my spinal problems and anything new. The hand came up normal of course, so I showed her the videos I made and she was happy I made them so she could see for herself. The doctor was great, really caring and thorough. She was very concerned about the neck spasm thing and the flashing in my eyes. She did say that with my chronically high C-reactive protein, I am already in an inflammatory state, so any little damage or irritation could just cause a very extreme response. She wanted to do some more research on that and ask a couple of rheumatologists about it, get their perpective as to a. why it's so high all the time and b. if that could be causing these symptoms.

So I will be scheduling the EEG and MRI as soon as I can and keep you posted!

I lived in Philly up until 3 years ago, but in NE Philly (sort of like a suburb). Now I'm just over the Walt Whitman Bridge, sort of across the river from Center City Philly. Where do you live now Sue?

Hi Carly,

Check your private messages.

Sue