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I Have Epilepsy

Sat, 07/26/2008 - 20:11
Enough said.

Comments

Re: I Have Epilepsy and I Hate My Life...

Submitted by grhyink on Thu, 2008-09-18 - 02:03

I can relate. I've been rescued all over Manhattan, since 1996.

I encourage you to read my article and take my last paragraph to heart (:Life is hard..."):

 

I ran across your article while doing a Google search on:

"I've had a stroke and have epilepsy. Why do I have strange sensations in my head after having had a stroke and now being epieptic.?"

I was writing my neurologist about the seizure that I had earlier today. It's difficult to describe briefly the feelings that I have in my head. I generally, I say, "My brain feels like..." to which the reply is "You can't feel your brain".

Just in case you wonder here's the email I just sent my neurologist (Dr. Luciano - associate professor of NYU epilepsy center in Manhattan):

Hi Dr. Luciano,

I would say yes, no or I don't know. Since short emails are best for you that's my simplified answer. I could discuss it fully, but you're much too busy for that. I'm sure the answer is discussed fully somewhere in a medical textbook

Obviously my seizures and the weakness are directly caused by the stroke-damaged area of my brain or the damaged nerves that I've felt and complained about, and or mentioned and discussed with Dr. Rutkovsky for the last nine years. (1999-2008). I'm sure I've mentioned it before to you. The simplest way to pinpoint it is to say"the problem area is the top-center of my head over and into the area of my left temple."

 

As I'm typing and thinking about this, I realize that my thoughts are in the exact place or area that I'm referring to when I say "the top of my head where I feel...". That's obviously something I would have noticed in the past. I don't know if I've ever said, "that's the same area where I feel my thoughts.There is obviously a blood vessel, capillaries or whever there, because I can feel a pulse right there at "the top-center of my head. It's pulsing at the same speed of my heart. Sit up straight and breathe regularly. You should be able to feel your heartbeat. It's the same rate. Do you feel the pulsing in your head? I do.

 

I think that the seizure that I had on the subway car earlier this year was caused by some form of stress. I was standing by the doors on the left side of the train. I looked over into the eyes of of a girl and that triggered an awareness that focused on the area of my left temple. It stimulated that area of my brain so strongly that I put my hand (rt., of course) against my temple and said "uh oh". Then I began having a grand mal seizure seizure that lasted about 45 min. That's the time from the start on the train, through the passengers taking me out of the train and laying me on the platform, then the stretcher to the ambulance, into the ambulance up until the time the dr. injected me with muscle relaxers. (?) I was only aware of the start of the seizure.

 

That seizure was caused by the stress of looking someone in the eyes, so that would be a yes as far as stress goes, I guess.

 

I, of course can give you several examples of what I would consider a seizure caused by what I would consider a stressless environment.

_______________________________________________

 

I read your email this afternoon. Everything above the line is the reply that I started. It's now 12:12 a.m. Everything below the line is where I'm picking up to tell you what happened up to and after "take". The center part of my head, which I described above, really began to bother me in a way that is typical. As I began and continued to focus on that part of my brain, or head or whatever you want to call it, and to focus on my thoughts and the pressure or the feeling of the density of that area and the feeling of blood pulsing through it This feeling and the pressure that I felt increased and got so strong that I thought that I should lay down, which I did. Debbie and I were going to a play at 8 p,m.Wed. evening. I started the upper portion of this email Wed. afternoon. Debbie came home around 6 p.m. I got up and went into the living room to talk to her. While talking to her, I went over to look out the window.

 

Fortunately I put my hand on the frame of the window which goes across the middle of the window. The one that has the lock on it and houses the lower glass panel. I say fortunately, because I started to have a mild seizure. I was shaking, was aware of it, but was able to hold myself up enough, so that I could turn and lean backward and to the right so I could land and sit in my recliner, which is right there in front of the window.

 

I should have stayed home, because my head was really bothering me, but I didn't want Debbie to go alone. I knew she wanted to go, so I said I was okay and went in spite of the fact that she didn't want me to go and my I was thinking that I shouldn't go, because my head was bothering me. I probably shouldn't have. Well... fortuately we made it there and back. She told me that I had a mild (compared to my dramatic grand mals) seizure while we were watching the play . She was sitting next to me. I wasn't aware of that one.

 

I didn't really want to tell you this, but I can see that I need something along with the Lamictal. Please make it cheap!

 

Well, so much for writing a short email :-)

 

I'll see you soon,

 

Gary

 

(edited by epi_help - please don't post other people's emails or information. refer to terms of use for the site)

I can relate. I've been rescued all over Manhattan, since 1996.

I encourage you to read my article and take my last paragraph to heart (:Life is hard..."):

 

I ran across your article while doing a Google search on:

"I've had a stroke and have epilepsy. Why do I have strange sensations in my head after having had a stroke and now being epieptic.?"

I was writing my neurologist about the seizure that I had earlier today. It's difficult to describe briefly the feelings that I have in my head. I generally, I say, "My brain feels like..." to which the reply is "You can't feel your brain".

Just in case you wonder here's the email I just sent my neurologist (Dr. Luciano - associate professor of NYU epilepsy center in Manhattan):

Hi Dr. Luciano,

I would say yes, no or I don't know. Since short emails are best for you that's my simplified answer. I could discuss it fully, but you're much too busy for that. I'm sure the answer is discussed fully somewhere in a medical textbook

Obviously my seizures and the weakness are directly caused by the stroke-damaged area of my brain or the damaged nerves that I've felt and complained about, and or mentioned and discussed with Dr. Rutkovsky for the last nine years. (1999-2008). I'm sure I've mentioned it before to you. The simplest way to pinpoint it is to say"the problem area is the top-center of my head over and into the area of my left temple."

 

As I'm typing and thinking about this, I realize that my thoughts are in the exact place or area that I'm referring to when I say "the top of my head where I feel...". That's obviously something I would have noticed in the past. I don't know if I've ever said, "that's the same area where I feel my thoughts.There is obviously a blood vessel, capillaries or whever there, because I can feel a pulse right there at "the top-center of my head. It's pulsing at the same speed of my heart. Sit up straight and breathe regularly. You should be able to feel your heartbeat. It's the same rate. Do you feel the pulsing in your head? I do.

 

I think that the seizure that I had on the subway car earlier this year was caused by some form of stress. I was standing by the doors on the left side of the train. I looked over into the eyes of of a girl and that triggered an awareness that focused on the area of my left temple. It stimulated that area of my brain so strongly that I put my hand (rt., of course) against my temple and said "uh oh". Then I began having a grand mal seizure seizure that lasted about 45 min. That's the time from the start on the train, through the passengers taking me out of the train and laying me on the platform, then the stretcher to the ambulance, into the ambulance up until the time the dr. injected me with muscle relaxers. (?) I was only aware of the start of the seizure.

 

That seizure was caused by the stress of looking someone in the eyes, so that would be a yes as far as stress goes, I guess.

 

I, of course can give you several examples of what I would consider a seizure caused by what I would consider a stressless environment.

_______________________________________________

 

I read your email this afternoon. Everything above the line is the reply that I started. It's now 12:12 a.m. Everything below the line is where I'm picking up to tell you what happened up to and after "take". The center part of my head, which I described above, really began to bother me in a way that is typical. As I began and continued to focus on that part of my brain, or head or whatever you want to call it, and to focus on my thoughts and the pressure or the feeling of the density of that area and the feeling of blood pulsing through it This feeling and the pressure that I felt increased and got so strong that I thought that I should lay down, which I did. Debbie and I were going to a play at 8 p,m.Wed. evening. I started the upper portion of this email Wed. afternoon. Debbie came home around 6 p.m. I got up and went into the living room to talk to her. While talking to her, I went over to look out the window.

 

Fortunately I put my hand on the frame of the window which goes across the middle of the window. The one that has the lock on it and houses the lower glass panel. I say fortunately, because I started to have a mild seizure. I was shaking, was aware of it, but was able to hold myself up enough, so that I could turn and lean backward and to the right so I could land and sit in my recliner, which is right there in front of the window.

 

I should have stayed home, because my head was really bothering me, but I didn't want Debbie to go alone. I knew she wanted to go, so I said I was okay and went in spite of the fact that she didn't want me to go and my I was thinking that I shouldn't go, because my head was bothering me. I probably shouldn't have. Well... fortuately we made it there and back. She told me that I had a mild (compared to my dramatic grand mals) seizure while we were watching the play . She was sitting next to me. I wasn't aware of that one.

 

I didn't really want to tell you this, but I can see that I need something along with the Lamictal. Please make it cheap!

 

Well, so much for writing a short email :-)

 

I'll see you soon,

 

Gary

 

(edited by epi_help - please don't post other people's emails or information. refer to terms of use for the site)

Re: I Have Epilepsy and I Hate My Life...

Submitted by castiel81 on Sun, 2008-10-05 - 21:20

 

I was diagnosed with gran mal epilepsy (juvenile myoclonic) at age 13 and I know what it is to resent something you have no control over.

You may have epilepsy but epilepsy does not have to own you. It take at least a year to become stabilized on the right medication for seizure control but that does not eliminate that you won't randomly have a seizure in the future.

Before I was diagnosed with this neurological disorder, I knew exactly what field (career) I wanted to go after but with epilepsy ruled that out - but it opened me up to a new exciting possibility now that I'm in my mid-twenties. I now have a Bachelor's in Forensic Psychology and am pursuing the Master's program.

Epilepsy may be a part of my routine in taking pills but I've learned to accept it. There are times when I myself get angry for being afflicted with this disorder but I realize that there are others who have worse diseases and afflictions than me. 

There are even times that I forget I have it - like maybe it went away. That was until last year. The day after my college graduation, I had a gran mal seizure and didn't even know it had occured. I had what my nuerologist called as retrograde amnesia which followed with what I was told was a 'violent seizure'.

Seizures are scary because I use to be conscious during them and now I'm not.

Please know that you can still have a full life with friends and family who care deeply about you and know what you have. As long as you have a good outlook on epilepsy and are comfortable with the topic, so will everyone else be. 

 

 

 

 

I was diagnosed with gran mal epilepsy (juvenile myoclonic) at age 13 and I know what it is to resent something you have no control over.

You may have epilepsy but epilepsy does not have to own you. It take at least a year to become stabilized on the right medication for seizure control but that does not eliminate that you won't randomly have a seizure in the future.

Before I was diagnosed with this neurological disorder, I knew exactly what field (career) I wanted to go after but with epilepsy ruled that out - but it opened me up to a new exciting possibility now that I'm in my mid-twenties. I now have a Bachelor's in Forensic Psychology and am pursuing the Master's program.

Epilepsy may be a part of my routine in taking pills but I've learned to accept it. There are times when I myself get angry for being afflicted with this disorder but I realize that there are others who have worse diseases and afflictions than me. 

There are even times that I forget I have it - like maybe it went away. That was until last year. The day after my college graduation, I had a gran mal seizure and didn't even know it had occured. I had what my nuerologist called as retrograde amnesia which followed with what I was told was a 'violent seizure'.

Seizures are scary because I use to be conscious during them and now I'm not.

Please know that you can still have a full life with friends and family who care deeply about you and know what you have. As long as you have a good outlook on epilepsy and are comfortable with the topic, so will everyone else be. 

 

 

 

Re: I Have Epilepsy and I Hate My Life...

Submitted by huachucamtn on Mon, 2009-05-04 - 16:28
good post.  what you over look is you are one of the few who are controlled by meds.  many are never controlled by meds.  those people never have a life that has no promis, future or fulfillment in. your just very lucky.  i am glad for you.

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