MelindaDawn
09-14-2005, 01:02 AM
I have been going through months of testing with doctors, trying to figure out what is wrong with me. I am a 29 year old female.
Finally, I was sent to a Neurologist. I had a full work up. The EEG, was pretty crazy, when they flashed the lights, my whole Right side of my body started jerking! I just thought it was odd. NEVER did I think she was going to come back and tell me that my brain waves were really off and I was had reflex epilepsy! I didn't really ask her many questions because I was so shocked! She said it was on both sides of my brain, but the MRI was clear and that I had no tumors or trama to my head. She said I MUST take medication or I could suffer a severe seizure. Started me on Depakote 500 and uping it till I get to 1000. So far, no side effects, but it doesn't seem to be helping much.
Symptoms that I have:
Tingling in my head, ear pain, loss of balance, nausea, dizziness and blackout, weird kind of feeling throughout. Then loss of memory.
My first really wierd episode was in a store when I was trying to calculate a % off something. I couldn't remember ANYTHING that delt with numbers!! Even the YEAR! It was freaky!! Then I had a few different ones dealing with phone numbers and names. With all the symptoms listed above, not just like a forgetful moment.
My big question is: Does anyone else get sick RIGHT before they eat? I get so nausious (sp?) right before I start eating or after the first few bites, then i just don't eat. I get dizzy, sick feeling. I will have a few episodes of absense seizures. This has caused me to loose 22 pounds in 6 months! Anyone else have this problem?
Oh, ONe more question? (sorry for this being so long) Anyone have them while they sleep? I will wake up with the "strange" feeling and notice that my checks and tongue are bite and chewed, I actually grinded the enamel off my lower teeth one night!!
It seems that when I do have the feeling on one come on, it is my RIGHT side, anyone else like this?
My doctor says that she would suspect that my EEG would be off only on my LEFT side of the brain then, but she said BOTH sides were heavily irratic.
Lights in stores, bright neon lights, etc. have always bothered me, loud noises and such, but never did I think I could have epilepsy! This is such a shock!
Well, I am just looking for someone else that relates! I kinda feel like I am all alone!! And I KNOW I am not.
Any answers would be appreciated!! Thanks!
Melinda
Finally, I was sent to a Neurologist. I had a full work up. The EEG, was pretty crazy, when they flashed the lights, my whole Right side of my body started jerking! I just thought it was odd. NEVER did I think she was going to come back and tell me that my brain waves were really off and I was had reflex epilepsy! I didn't really ask her many questions because I was so shocked! She said it was on both sides of my brain, but the MRI was clear and that I had no tumors or trama to my head. She said I MUST take medication or I could suffer a severe seizure. Started me on Depakote 500 and uping it till I get to 1000. So far, no side effects, but it doesn't seem to be helping much.
Symptoms that I have:
Tingling in my head, ear pain, loss of balance, nausea, dizziness and blackout, weird kind of feeling throughout. Then loss of memory.
My first really wierd episode was in a store when I was trying to calculate a % off something. I couldn't remember ANYTHING that delt with numbers!! Even the YEAR! It was freaky!! Then I had a few different ones dealing with phone numbers and names. With all the symptoms listed above, not just like a forgetful moment.
My big question is: Does anyone else get sick RIGHT before they eat? I get so nausious (sp?) right before I start eating or after the first few bites, then i just don't eat. I get dizzy, sick feeling. I will have a few episodes of absense seizures. This has caused me to loose 22 pounds in 6 months! Anyone else have this problem?
Oh, ONe more question? (sorry for this being so long) Anyone have them while they sleep? I will wake up with the "strange" feeling and notice that my checks and tongue are bite and chewed, I actually grinded the enamel off my lower teeth one night!!
It seems that when I do have the feeling on one come on, it is my RIGHT side, anyone else like this?
My doctor says that she would suspect that my EEG would be off only on my LEFT side of the brain then, but she said BOTH sides were heavily irratic.
Lights in stores, bright neon lights, etc. have always bothered me, loud noises and such, but never did I think I could have epilepsy! This is such a shock!
Well, I am just looking for someone else that relates! I kinda feel like I am all alone!! And I KNOW I am not.
Any answers would be appreciated!! Thanks!
Melinda
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kayakmom
09-14-2005, 02:08 PM
Sometimes dark polarized lenses can help fight the effects of the lights in stores and things. Also if you have any warning, try covering ONE eye completely with your hand. I have READ that it can help stop the progression if caught early....
You can do a search for Anoxic or Reflex epilepsy and get a lot of information.
My son has most of his seizures in sleep. My dd had problems for awhile with having subclinical seizures iwth flickering lights. She still has migraines and uses sunglasses a lot.
You can do a search for Anoxic or Reflex epilepsy and get a lot of information.
My son has most of his seizures in sleep. My dd had problems for awhile with having subclinical seizures iwth flickering lights. She still has migraines and uses sunglasses a lot.
narnian
09-16-2005, 11:57 PM
Just wanted to let you know that my daughter was diagnosed with epilepsy last year at the age of 26. It was a shock to us also. She has found relief from seizure activity with Keppra. She also is bothered by bright light and has to avoid certain offices in her
building because of it. You are NOT alone.
building because of it. You are NOT alone.
EthanF
09-17-2005, 01:45 AM
I just want you to know there are more of us out here than you can imagine. I have had epilepsy since I was less than a year old. To give you an idea of the emotional harm my epilepsy has had on my family let me tell you my first seizure was on my mom's first mother's day whis was also her birthday. I spilled all me feelings on my first post on this sight. You can read about it here http://www.healthboards.com/boards/showthread.php?t=238198 if you want.
By the way you describe your seizures are origionating on the left side of your brain because a lot of the activity you explain is happenning on the right side. You might want to ask your neurologist about doing what is called long term monitoring if you haven't done it already. As you mentioned I have also had many seisures in my sleep as well during which I have bit my tongue hard enough to leave some bad marks on it. If you go to the E.R. they can give you some liquid persription medication to help the marks on the tongue go away. It tastes horrible though. When I have seizures in my sleep I usually wet the bed as well. I have never gotten sick right before I ate but when I was on trileptol it made me so sick that 5-10 minutes after I ate someting I would throw it up. I haven't had issues with lights at all but that could be determined by what type of seizures you have. I wish you the best and hang in there.
Best of luck
Ethan
By the way you describe your seizures are origionating on the left side of your brain because a lot of the activity you explain is happenning on the right side. You might want to ask your neurologist about doing what is called long term monitoring if you haven't done it already. As you mentioned I have also had many seisures in my sleep as well during which I have bit my tongue hard enough to leave some bad marks on it. If you go to the E.R. they can give you some liquid persription medication to help the marks on the tongue go away. It tastes horrible though. When I have seizures in my sleep I usually wet the bed as well. I have never gotten sick right before I ate but when I was on trileptol it made me so sick that 5-10 minutes after I ate someting I would throw it up. I haven't had issues with lights at all but that could be determined by what type of seizures you have. I wish you the best and hang in there.
Best of luck
Ethan
ScorpionArt
09-19-2005, 01:41 PM
Yes there is a lot of us out here with the samethings going on. I am a 43yr man that I have the samethings that you do but my Doctor ( as domb as he is ) told me that I'm not haveing Epilepsy seizures but they are Psuedo seizures with mean ( Psuedo or fake ) just becuse he is lazy and don't what to work to help me.