Is there anyone out there that has the same things?

[justnotsure]

HI Everyone! I am new here. Well this is my first posting and I guess I am just looking for some answers, that can make me feel less insane.
I have been having these symptoms since I was 5 and now about to turn 27 in a week. The doctors can't figure it out, but all they can tell me is, that they believe it is some type of seizure.

Things usually start with this odd feeling that I just can't explain. I just don't feel good and I can't explain it. I sometimes get a weird knot feeling in my stomach like I haven't eaten in a really long time. Then my vision fades to white. I mean everything just turns white to the point that all I see is white. Then I feel like I have to lay down. I have never fallen. My mother has said that my face turns a whitish color and I try to talk but my words are just mumbled. I know that when this happens, I feel like my hearing is muffled too, I can hear but it feels like there is cotton balls or something in my ears. According to those around me I don't shake. I have in the past lost consciousness a couple times, but that is not a usual occurrence. Sometimes I get a heated feeling in my stomach area. My mother has said sometimes it does get hot to the touch but not usually. After this all happens, my vision returns and the rest of the symptoms go back to normal but I am really tired and usually sleep for hours after. I am currently on Gabapentin. Which I have to say I hate, makes me so foggy headed and have a hard time concentrating. School and work have suffered. My doctor has said that I had a type of sensory seizures. I just don't want to keep jumping from med to med and dosage to higher dosage if this isn't even seizures. So all in all can anyone tell me if they have had similar seizures? Sorry this posting is so long. Sorry about that. Will try to be better about it in the future. Thank you so much for listening.

 

[Nakamova]

Hi justnotsure, welcome to CWE!

Your symptoms do sound like absence seizures or simple partials that others on this site have described (and I'm sure they will chime in to confirm). I'm very sympathetic to the unpleasantness of the medication merry-go-round. Most of us here have taken a few rides on it. Unfortunately, because responses are idiosyncratic it's tough to know in advance which med at which dosage will do the trick. If Gabapentin isn't working for you, and is making you feel lousy, then it's worth looking for something else. There are quite a few meds out there now, and others here have had some success as well using neurofeedback and/or nutritional changes.

By the way, don't worry, your posting wasn't long!

Best,
Nakamova

 

[Nakamova]

This thread might be helpful, given the symptims you describe. It lists some of the unusual sensations that can be auras/simple partials:

http://www.coping-with-epilepsy.com/forums/f23/auras-10254/

 

[dragonlady1978]

I can't be very helpful with the question of whether or what type of seizures you might be having (there are so many different types), but the losing consciousness and being extremely tired afterwards are common for seizures. Many types do not involve actual shaking, during most of my son's seizures he makes repetetive movements like a pinching motion with his hand and clicking/grinding/sucking movements with his mouth.

Something you said caught my attention though.....I used to take 900 mg a day of gabapentin for nerve pain and the side effects made me stop taking it.

Were all of your symptoms present before you began taking the gabapentin? I would have bouts several times a day where it felt like my head was full of cotton, the room would sorta swim and it sounded like everything was far away or like an echo-I couldn't shake that feeling or think clearly. Had difficulty remembering simple things and focusing on simple tasks, coordination was off. Also, it caused severe anxiety.

You hadn't really said whether or not it was helping to control your episodes. You should know that most seizure meds have uncomfortable side effects, but you have to find balance in something that both works well for control AND that the side effects are tolerable enough as not to alter your quality of life.

I have gone through the seizure med roller coaster with my son, and it isn't fun but it's pretty much to be expected that most people have to try several meds, and even several combinations of meds, to find what works. It's trial and error unfortunately.

If your episodes aren't controlled, the point is moot....you should definitely try something else.