eightballgal
08-31-2006, 04:41 AM
Hi I am new to this, have been reading but cant seem to find anyone with similar problems to me. I have grand mals that I am conscious through, does anybody else. My epilepsy was caused by staph and scaring after removal of a meningioma. They tell me this is focal epilepsy? I am on Trileptal, Dilantin, Frisium and Rivotril. I am very anxious and have read this is a side effect of Trileptal though my neuro disagrees. I have been seizure free for 2 months and am averaging around 1/month. Can anybody help me, I am so depressed nothing seems to be working and I cant stand the anxiety I am feeling since being on Trileptal. My hands shake all the time and I feel like my whole body is shaking under my skin and am having problems with my memory. Will this go away, am I on the wrong meds or is it something I have to learn to live with?
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bettyst
08-31-2006, 09:51 AM
I would seek out a new doc that understands what you are going through. I hope you find something that works. Tripp has been on several meds that caused some side effects...one Lamictal caused sever headaches when telling his former neuro he would tell me that it did not cause the headaches after talking to people here and looking it up on the internet I found out that it can!! I changed to another neuro, she is wonderful and I think any doctor that takes your call when you call(she does this) is fab!!! Good luck...sounds like you take an awful lot of meds.
Travis from MN
08-31-2006, 06:46 PM
Oftentimes it is the scars, not the tumor itself that will cause seizures.
As for being conscious through GM's, most likely it is a CP (complex partial) you mentioned. GM's you will black out, or have a loss of consciousness that could be brief to longer. Then many have a state of confussion (post seizure) where some can see and hear (some may not have both senses) while the brain is starting to recover from the seizure.
I had an astrocytoma (star shaped tumor) removed when I was a child from the brain. Prior to the pressure in the skull by the tumor and the first hour long seizure (or series of seizures; hard to say what it was) I had never had a seizure.
It was removed and I have been on meds since. A followup MRI years later showed that the portions that they could not remove were no longer there.
It is believed that it is the scars from the operation why I still have seizures.
I also have a (I think this is the correct term) Optic Glioma (a tumor that surrounds the optic nerve) which may slowly cause loss of vision. Benign, possibly slow growing, possibly it could stay the same size.
As for the meds, do NOT, I repeat DO NOT let the *possible* effects listed scare you. They are required to print that information. Take your meds, IF you experience problems or symptoms with any medication call your Dr and tell them what your symptoms are, how long after administering the med and they will let you know what to do.
If your Dr ignors you keep pestering them until you get a response. You are the best judge for what is going on in your body.
--Travis
As for being conscious through GM's, most likely it is a CP (complex partial) you mentioned. GM's you will black out, or have a loss of consciousness that could be brief to longer. Then many have a state of confussion (post seizure) where some can see and hear (some may not have both senses) while the brain is starting to recover from the seizure.
I had an astrocytoma (star shaped tumor) removed when I was a child from the brain. Prior to the pressure in the skull by the tumor and the first hour long seizure (or series of seizures; hard to say what it was) I had never had a seizure.
It was removed and I have been on meds since. A followup MRI years later showed that the portions that they could not remove were no longer there.
It is believed that it is the scars from the operation why I still have seizures.
I also have a (I think this is the correct term) Optic Glioma (a tumor that surrounds the optic nerve) which may slowly cause loss of vision. Benign, possibly slow growing, possibly it could stay the same size.
As for the meds, do NOT, I repeat DO NOT let the *possible* effects listed scare you. They are required to print that information. Take your meds, IF you experience problems or symptoms with any medication call your Dr and tell them what your symptoms are, how long after administering the med and they will let you know what to do.
If your Dr ignors you keep pestering them until you get a response. You are the best judge for what is going on in your body.
--Travis
neurowreck
08-31-2006, 09:09 PM
The surgery to remove the tumor, depending on where it was located, had to also go through healthy brain tissue. And, almost all post-tumor patients are put on seizure meds for a period of time because of this- it's very common to have seizures after tumor surgery. The type of seizures vary, but it's one of the most common reasons (I said one,for those reading, and freaking out !!) for adult onset seizures.
Yes, scarring does cause seizures.
Yes, scarring does cause seizures.
Colleen04
08-31-2006, 11:34 PM
Originally posted by Susan E M Kelly
Hi I am new to this, have been reading but cant seem to find anyone with similar problems to me. I have grand mals that I am conscious through, does anybody else.
I am consious during my grand mals now. I haven't had one in about 3-4 years. But when I hit puberty they started waking me up in my sleep vs sleeping through them. I know they're GM's because I have partial seizures as well and I am able to distinguish the difference now. I have both partial and GM in my sleep and they both wake me up. I have to say though, being consious during a GM is very frightening. I have friends who ask me to describe it and it's undescribable. Not being able to stop yourself from shaking and drooling, or not being able to speak is hard to explain to someone. But yes, I am also consious during my GM's. Well 3-4 years ago anyway.
Hi I am new to this, have been reading but cant seem to find anyone with similar problems to me. I have grand mals that I am conscious through, does anybody else.
I am consious during my grand mals now. I haven't had one in about 3-4 years. But when I hit puberty they started waking me up in my sleep vs sleeping through them. I know they're GM's because I have partial seizures as well and I am able to distinguish the difference now. I have both partial and GM in my sleep and they both wake me up. I have to say though, being consious during a GM is very frightening. I have friends who ask me to describe it and it's undescribable. Not being able to stop yourself from shaking and drooling, or not being able to speak is hard to explain to someone. But yes, I am also consious during my GM's. Well 3-4 years ago anyway.
eightballgal
09-01-2006, 02:22 AM
Thank you to all who responded. I am glad to hear I am not alone, though sorry for all of you. I guess I am blessed compared to alot of other people out there. Unfortunately they are GMs while conscious. I started having grand mals while I had staph unconscious. Then one day I suddenly started to get an aura and was totally aware of what was going on during a grand mal which followed. I can tell you what every one in the room has said as soon as I am able to talk again. It starts off with the left side of my face pulling down, then I lose control of my head and arms. I know to get to the lounge as quickly as possible before my whole body becomes stiff and uncontrollable. The worst part of all is when you can feel yourself biting your tounge followed by the drooling and then the horrible noises you make while frothing at the mouth. I also now have what seems to be OCD like symptoms. Where my mind seems to get stuck on something and I get a horrible feeling that I cant stop. Does this happen to others? Sorry to rattle on but does anyone else take trileptal no-one seems to know anything about it
SentenceDoing
09-02-2006, 11:48 PM
I have grand mals that I am conscious through, does anybody else.
YES! I'm not alone!!!
The one gran mal I had, I was conscious through a lot of it, and my doctor actually came out and told me I was wrong, because that's not possible. I got so mad! He was trying to tell me what I remembered!
I was conscious through enough of it that I remember my whole body clenching up and hurting and buzzing, and not being able to move or breathe for about 30 seconds. Then I woke up a half hour later. so I must have gone unconscious, but I remember a lot more of it than most people do, I guess. And that's why I was in a depression and scared to death for 4 months after that. I was so scared that I was going to go through that again. It was the scariest thing that ever hapened to me. It actually took me about 4 years before I would even talk about the fact that I have Epilepsy because I was so deathly afraid of it.
YES! I'm not alone!!!
The one gran mal I had, I was conscious through a lot of it, and my doctor actually came out and told me I was wrong, because that's not possible. I got so mad! He was trying to tell me what I remembered!
I was conscious through enough of it that I remember my whole body clenching up and hurting and buzzing, and not being able to move or breathe for about 30 seconds. Then I woke up a half hour later. so I must have gone unconscious, but I remember a lot more of it than most people do, I guess. And that's why I was in a depression and scared to death for 4 months after that. I was so scared that I was going to go through that again. It was the scariest thing that ever hapened to me. It actually took me about 4 years before I would even talk about the fact that I have Epilepsy because I was so deathly afraid of it.
eightballgal
09-09-2006, 07:25 AM
Thankyou Sentencedoing,
I was having those things at least once a month and the only reason anyone will believe me is because my children and partner were in the room for most of them. I could tell them exactly what each of them had said and done while it was all happening. Im pretty sure the doctors all think Im having myself on, but yes its all real. Thankyou for letting me know Im not the only one. I am now seeing a psych because I am too scared to leave the house and even when Im home I am horrified all the time anyway. If it ever does happen again just try to relax and tell yourself it will be over soon, that seems to help a little. That is if you remember while your scared to death. Its been 2and 1/2 months free for me now. Hope neither of us experience it again.
Thankyou so much
I was having those things at least once a month and the only reason anyone will believe me is because my children and partner were in the room for most of them. I could tell them exactly what each of them had said and done while it was all happening. Im pretty sure the doctors all think Im having myself on, but yes its all real. Thankyou for letting me know Im not the only one. I am now seeing a psych because I am too scared to leave the house and even when Im home I am horrified all the time anyway. If it ever does happen again just try to relax and tell yourself it will be over soon, that seems to help a little. That is if you remember while your scared to death. Its been 2and 1/2 months free for me now. Hope neither of us experience it again.
Thankyou so much