My name is Selina. In December of 2004 I fell down 20 set of concrete steps and seized non-stop for nine days. After this time my neurologist came into my room and told me that they were going to put me in a Psych ward.
I am still having horrible seizures with really bad memory loss. I do not know what to do anymore. I can not drive, work or just about anything else. I have become a recluse in my home and all I want are answers as to what is wrong with me.
I fell in the local Wal-mart last week and broke my nose from a seizure, and I have no recollection of that whole day.
I am so confused and frustrated with this whole situation. I really would like some insight on what to do.
I have made an appointment to see an epileptologist in Memphis TN because it is not too far away from me, but if they come up empty handed I am going to be very confused.
If any of you know of a different avenue to help me I sure would appreciate it. I have been on every seizure medication there is and nothing is working.
First of all, I give you a ton of credit for putting all this out there on your very first post on these boards. Gosh, you've been through so much! A disclaimer first...I do not have any medical background whatsoever, I'm just a person who has epilepsy (and other medical problems) that frequents this board.
Seeing an epileptologist is a great start. I do NOT think you belong in a psych ward; you have an epileptic condition. Are you currently on any seizure meds?
Sometimes people need to be on the right combinations of medication to have the right seizure control. Sometimes that doesn't work and surgery is necessary.
I hear your frustration, but I really think you're going in the right direction by seeing this specialist. Try to bring copies of your records, if you have them. Write down your questions in advance, so you're prepared. Make a list of your concerns...seizures, migraines, and memory loss (mention that you lost an entire day when you fell). Memory problems are notorious in people with epilepsy. If you can bring someone to be an extra "ear" to help you remember what was said during the visit, that would be great...otherwise tape record it or take notes. Be sure to mention your migraines to this doctor, he doesn't only treat seizures. He may even suggest Topamax, as an adjunct medication to other seizure meds, as it's supposed to be good for migraines.
If it's any consolation, my driver's license was suspended due to seizures and I literally just had it reinstated this week after I appealed it. I was only without it for 6 months, but I know what it's like to have your independence taken away and have to rely on others for everything. It is downright crushing - I do understand.
Anyway, I hope your nose feels better soon. Hang in there and keep pressing for answers. You're really on the right track now. When is your appt. with this dr.? I'd love to hear how it went. Please keep us posted.
Last edited by life_is_good; 12-02-2007 at 06:44 AM.
Ouch. Sorry to hear thats how you started having seizures.
As one who started it as a child with another odd situation (brain tumor) I know the helpless feeling.
Speaking as another epileptic (PATIENT ONLY, no training) it sounds like the head trauma is a likely cause that started your situation. Scans can help the Dr's further their diagnosis into that. What meds may help you the best comes next.
Answers are not something they can give us quickly Try to be a little patient with them. It's not like setting a broken bone. The treatments differ from patient A to patient B to patient C. What works for one person may not work the same way for another. There is no real black and white when it comes to the medications. It can be a lot of trial and error depending how well the first med goes.
I was lucky that my first meds worked very well as a child. After school ended something changed in my body and the meds no longer held, so they needed to find something that would work... Thus a few years of trial and error.
If you know of anything that causes you problems make notes of it. You mentioned a store you had seizures at. Do you know if it was the "long tube" lights that caused problems? They CAN cause problems for some epileptics.
This is where starting a journal comes in handy; and a "month at a glance" calendar can be helpful to log seizures and medication changes.
I *think* it was you who mentioned this "month at a glance" thing once before when I mentioned difficulty with organizational stuff since my small stroke and subsequent seizures. The calendar I've been using just wasn't working for me. Just wanted to jump in here (since you just brought up the topic again) and thank you for the suggestion. If it wasn't you, I just wanted to thank whomever suggested it. It's been working wonders!
Sorry for the interruption, didn't mean to get off topic.
It may or may not have been me at first; but I often repeat it.
I find it useful so If you can come up with a system to use letters for (G) grandmal (A) aura or whatever types you wish to use for a coding based on your case. As long as you know and write down what your system is. Write down the Time (approx. length) of the seizure on the Day IF you can.
Also note med changes when they occur. You will be amazed when looking back how this can help you and the Doc see if there has been an improvement or not. I also found making a note or total seizures in bold at the top/bottom of the month makes it easy to see at a glance when visiting the Doc.
It's just one of the many things we come across. I came on it very late in my years of having seizures when the hospital started providing freebie calendar's at the clinic. Since then I purchased annual ones to do the same.