Epilepsy & Seizures Support Group
Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...
Hey all! I am fairly new to this group, but wanted to get some input!
In 2009, I started to have really bad pain behind my left eye. Four days later, I had my first seizure. After the pain built, became debilitating, and going through a ton of crazy stuff seizure wise, it had been discovered that I have a brain disease. I had my first brain surgery (to implant a shunt to drain fluid, I have increased fluid normally). I did not get well from it, but I had no seizures...until April 2011. Then I had one and it was FAR worse than the ones before. In May 2011, I had the next one. These were becoming dangerous. I had pink eye so I was cleaning out my eyes in the bathroom at my mom's sink and I went into a seizure and fell into the sink and literally pulled the sink out of the wall...they had to turn off the water supply to the house in order to put the sink back into the wall. I was obviously admitted to the hospital (that one hurt...way bad!) They then saw seizure activity on my EEG and I was started on Tegretol. I was doing pretty well until October 2011. I went into a seizure in the middle of CVS - the drugstore. I was then taken to the hospital via ambulance and admitted into the ICU. I could not breathe, my oxygen was low and I was seizing often...they were very, very close to putting me on a ventilator. My Tegretol was increased. I then had my next surgery, to add another device to my shunt catheter to stop malfunctioning/over-drainage and that pretty much took care of that issue!) In May of this year, I had the first seizure since October 2011 - which was a fantastic and welcomed break! However, now when I have them, my left shoulder comes out of place...that is SO painful. It still has not healed. In June, I had another and my neurologist said it was because my Tegretol level was on the very low side of normal...so it was increased. I had one in July, but not as bad...just the shoulder dislocation. I have been feeling really well and all despite the seizures. The Tegretol REALLY helps.
Anyhow, my question is that I do not yet have an actual name for these. My mom says she was told they are grand mal and when we read about the phases of a grand mal seizure, she said it explains me exactly! I am waiting to have a new EEG done by my new neurologist (that I started seeing in May, all of my neuro doctors are at Johns Hopkins...dream team!)
She said I have really no warning, I go into it, I make a grunting or groaning noise, I am like grinding my teeth and biting my tongue, foaming out of the mouth, eyes roll up, I tense up and bend my arms up really tightly (that is where my shoulder dislocates), then I convulse. and sometimes loss my bladder. This goes on for about five-seven minutes. Then I go to sleep for at least a half hour and when I wake up, I have no memory what-so-ever of the seizure. I come out of it and am thinking, "My God, why am I suddenly SO sore?!" and they will have to tell me a few times that I had a seizure.
Anyone else think they sound like grand mal??
Opinions are appreciated. :) Thanks!
Heather
In 2009, I started to have really bad pain behind my left eye. Four days later, I had my first seizure. After the pain built, became debilitating, and going through a ton of crazy stuff seizure wise, it had been discovered that I have a brain disease. I had my first brain surgery (to implant a shunt to drain fluid, I have increased fluid normally). I did not get well from it, but I had no seizures...until April 2011. Then I had one and it was FAR worse than the ones before. In May 2011, I had the next one. These were becoming dangerous. I had pink eye so I was cleaning out my eyes in the bathroom at my mom's sink and I went into a seizure and fell into the sink and literally pulled the sink out of the wall...they had to turn off the water supply to the house in order to put the sink back into the wall. I was obviously admitted to the hospital (that one hurt...way bad!) They then saw seizure activity on my EEG and I was started on Tegretol. I was doing pretty well until October 2011. I went into a seizure in the middle of CVS - the drugstore. I was then taken to the hospital via ambulance and admitted into the ICU. I could not breathe, my oxygen was low and I was seizing often...they were very, very close to putting me on a ventilator. My Tegretol was increased. I then had my next surgery, to add another device to my shunt catheter to stop malfunctioning/over-drainage and that pretty much took care of that issue!) In May of this year, I had the first seizure since October 2011 - which was a fantastic and welcomed break! However, now when I have them, my left shoulder comes out of place...that is SO painful. It still has not healed. In June, I had another and my neurologist said it was because my Tegretol level was on the very low side of normal...so it was increased. I had one in July, but not as bad...just the shoulder dislocation. I have been feeling really well and all despite the seizures. The Tegretol REALLY helps.
Anyhow, my question is that I do not yet have an actual name for these. My mom says she was told they are grand mal and when we read about the phases of a grand mal seizure, she said it explains me exactly! I am waiting to have a new EEG done by my new neurologist (that I started seeing in May, all of my neuro doctors are at Johns Hopkins...dream team!)
She said I have really no warning, I go into it, I make a grunting or groaning noise, I am like grinding my teeth and biting my tongue, foaming out of the mouth, eyes roll up, I tense up and bend my arms up really tightly (that is where my shoulder dislocates), then I convulse. and sometimes loss my bladder. This goes on for about five-seven minutes. Then I go to sleep for at least a half hour and when I wake up, I have no memory what-so-ever of the seizure. I come out of it and am thinking, "My God, why am I suddenly SO sore?!" and they will have to tell me a few times that I had a seizure.
Anyone else think they sound like grand mal??
Opinions are appreciated. :) Thanks!
Heather
My doc put me on a new form of Tegretal, it is called Trileptal. You might talk to your new neurologist about it. It is supposed to be 'new and improved'. But you know, it might not work for everyone.
Jenn
Jason
I do not have the actual diagnosis of what kind or where they are from yet! I had to switch neurologists in May. I did not actually have one before that, I have no insurance, as my primary doctor was managing my Tegretol since I was not having seizures for a bit of time, and since seeing him in May, he has needed to address my issues from the brain disease BEFORE addressing the seizures.
We are in the process of getting another EEG taken so I am sure he will find out. He is determined. Got to love Johns Hopkins doctors! They are very thorough!
Thanks for your opinion!
I have dislocated my shoulder a few times already. Falling on it is the most common way. I am double cursed. I have epilepsy and legally blind with tunnel vision. I sometimes walk into door frames. Have dislocated it that way too.
Jason
Anyway, I am writting to tell you about the kind of seizures I have. When I have a siezure I can hear and see everthing around me, but I cannot move. It is like I am frozen in time while everyone else keeps moving. It can be really scary. People tell me that I turn really pale when this is about to happen.
When my left arm curls up or starts jerking around I turn red in the face.
Now my siezures are caused by brain damage caused by an accident. When I was ten I was hit by a car and landed on my head. They had to do brain surgery to save me, by drilling a hole in my head around my right temporal lobe to relieve the pressure. Unfortunatlywhen they did the surgery it caused a cyst to form on my brain, and when under stress or just too tired, the cyst swells and causes pressure there that causes my siezures. I hope this helps.. Oh and I had a stroke that damaged 35% of my brain.
Jenn
I know there is not really much they can do for the stroke stuff, but is there anything they can do for the cyst? And if so, is it just too complicated? I am not sure I would try anything with what you have been through...the worst I got after anything brain related was that I got meningitis after my second brain surgery. Two days after I was discharged, so four days after my surgery, my mom found me lying on the floor, delirious, and with no memory of how I got there (and I still have absolutely no memory of this stuff). I also had what they call "drop wrist." My left wrist was stuck in a position as if it had been broken and fallen down. Anytime I, or someone else, lifted my wrist back to how it should have been and then let go, it feel right back down. I was taken to the ER and they found I had a 103 degree fever and so a lumbar puncture was performed and they found infection in my fluid...so I was admitted and people had to wear gowns when coming in to see me! It took me about two months to get function back in my wrist correctly. It was because, at some point, during my brain surgery, my fluid picked up an infection and as it grew and effected me, it did not just effect my state of mind, my temperature, my memory, it effected my ability to use my left wrist! Scary...I can handle brain surgery...but not getting sick FROM it!
I am going to add you as a friend!
Heather
It sounds like you have been through way more than me! I did ask if they could remove the cyst and they told me they could; but of course it would come back within a year or two. After all surgery did cause it. So there is no option there. I have lived with this for almost four-fifths of my life, so I guess I am used to my unusual happenings. ;) Through God all things are possible.
Jenn
I would not say I have been through MORE than you; it just all came at once. All of the stuff I have gone through has been within the last three years. I was hit with my brain disease in 2009 and my first brain surgery was in 2010. So all the surgeries (there have been four) have been within the last 2 years.
God and prayer help so much! And, it is crazy to know this, all of the things we have gone through have definitely made us stronger. I know people say that, but until you truly go through stuff, you never know. I am such a strong person because of all of that! It amazes me!
The Lord is good!
Jenn