A seizure after so many years!

Four days ago I had a seizure after 13 years seizure free, plus the last 3 years have been Dilantin free. Has anyone else had a similar experience? The seizure happened while I was sleeping, I don’t remember anything except waking up in the ambulance, plus my back hurts and my left cheek is partially numb.

Hey Brian,

I can’t speak specifically to this topic, but thought I could at least offer you some info on connecting with others who have experienced something like this. Sometimes you will get more hits if you post a blog. They stay on the home page longer than the discussions do. (The discussions though do get “bumped back” to the home page each time someone posts!

Also, search the blogs and forums for “seizure” or “Dilantin” and you will find people that will be good resources for you. Then you can post a message on their page directly and see if you connect that way.

Good luck!!!

btw- we are neighbors! I’m up in El Dorado Hills. :slight_smile:
Shalon

Thank you Neighbor! I was not at work yesterday because of neurology appointments and MRI so I have some catching up to do, hopefully I can get to the blog later today.

Shalon said:

Hey Brian,


I can’t speak specifically to this topic, but thought I could at least offer you some info on connecting with others who have experienced something like this. Sometimes you will get more hits if you post a blog. They stay on the home page longer than the discussions do. (The discussions though do get “bumped back” to the home page each time someone posts!



Also, search the blogs and forums for “seizure” or “Dilantin” and you will find people that will be good resources for you. Then you can post a message on their page directly and see if you connect that way.



Good luck!!!



btw- we are neighbors! I’m up in El Dorado Hills. :slight_smile:

Shalon

WOW! Did you ever experience any seizures while on Dilantin? I’ve only had 1 seizure (about 1 1/2 yrs after my surgery) and have been on Depakote ever since (my sugery was in 1995)… Let me know what the doc says!!

Scott

Hi Scott, I don’t really remember having any seizures while on Dilantin; its been a good 13-14 years since I’ve had to deal with any of this. The last time I had one was because I had practically stayed up 2 nights in a row so was really sleepy, I may have been on Dilantin then but it was so close to the time when they switched me from Tegretol to Dilantin I could be mistaken.

Scott said:

WOW! Did you ever experience any seizures while on Dilantin? I’ve only had 1 seizure (about 1 1/2 yrs after my surgery) and have been on Depakote ever since (my sugery was in 1995)… Let me know what the doc says!!


Scott

Scott, I almost forgot… I had an MRI and the doc said it was normal so there is no new problems. The reason for the seizure is not clear but basically he said that whenever there is any tinkering around in the brain, you are susceptible to seizures; whether it be from the actual work inside the brain or from scar tissue. I took a chance 3 years ago by getting off the Dilantin and well… here I am with another seizure. My biggest concern is that the seizure left me with partial numbness of my left cheek, the doc says it may go away or it may not. Usually stuff like that goes away fairly quickly but it just may need more time to repair. Also I’ve been having severe pain half way through the night that hasn’t gotten any better. It originates in my upper back and kind of radiates around my rib cage. I had an xray yesterday but no word yet from my doc, he seems to think it will heal after taking 3 weeks of anti-inflammatory Naprosyn, but he also suggested physical therapy.

So we both had our surgeries fairly close together, mine was in January 1994. Are you still on Depakote? I’m thinking of switching to Keppra for the benefit of not being so zombie-like. Have you had any issues since your last seizure?

Brian Brosseau said:

Hi Scott, I don’t really remember having any seizures while on Dilantin; its been a good 13-14 years since I’ve had to deal with any of this. The last time I had one was because I had practically stayed up 2 nights in a row so was really sleepy, I may have been on Dilantin then but it was so close to the time when they switched me from Tegretol to Dilantin I could be mistaken.


Scott said:
WOW! Did you ever experience any seizures while on Dilantin? I’ve only had 1 seizure (about 1 1/2 yrs after my surgery) and have been on Depakote ever since (my sugery was in 1995)… Let me know what the doc says!!

Scott

Wow Irene, you really went a long time between. When you go so long you tend to forget about it and think you’re perfectly healthy then BAM it knocks you down a few notches. I hope you weren’t doing anything dangerous when it happened. Take care:)
Irene C said:

yes, I was free of seizures from 9 years old until I was 34. Then I had another one about 10 years ago. I am 59 and still take Tegretol.


beans

Irene, thank you for sharing about your history. It was so strange for me because I was really feeling great, not much stress, I was sleeping good (heck I was asleep at the time!) and bam!! Anyway, the doctor said it most likely wouldn’t have happened had I stayed on the Dilantin those 4 years so I have decided to stay on it. This thing could have happened at any time and could have literally killed me had I been doing the things I love to do like traveling, snorkeling, hiking, driving etc. I’m not sure when you replied either as I have not been logging in as much lately with so much life happening. Thanks again for sharing.

Irene C said:

Brian, I don’t come to this site often, so I did not see your response until tonight. I am older than most here, it’s been 50 years since AVM and I don’t have a lot in common with people just now going through this.
I never had a seizure on dilantin, but I was put back on dilantin after the second big seizure and was allergic to it. Now I take Tegretol. No, I wasn’t doing anything dangerous at the time of the 2nd seizure, but I was in a garage and hit my head on the concrete floor. No one found me for hours because it was night. I hope I never have another. Seems to me it was connected to so much stress and no sleep. I was a mess because my husband had just been told he had an incurable (except by transplant) heart disease. He died 10 years later when he was 46.



beans