New to the forum

Hi, everyone. My name is Chris and I am 24 years old. I started having seizures when I was 18 years old. I guess I'm here because I need to vent. The position I am in right now I find very frustrating and depressing.

As I said, this started when I was 18. I had several seizures. After some tests, I was diagnosed with epilepsy and given Valproic Acid to help with the effects. The seizures went away but I was left with constant exhaustion and terrible headaches. After a year of this and further tests, the doctors decided that it was not epilepsy after all, just migraine headaches. Since I was no longer having the seizures I left it at that. Then last year it all started again. I had one seizure last May and then another in August. Since then, the seizures have become more frequent, about one every week now.

I always have gotten a warning about 10 minutes before. Weak muscles and an upset stomach.

During the seizure, which I do remember, I get muscle spasms and paralysis over most of my body. Sometimes I am

able to speak, but quite often I don't have the motor control to do even that. After the seizure it is usually a couple days before I recover my strength completely. The seizures last between 2 minutes and 8 minutes in length, which I think has something to do with how tired I am when it happens. I retain my memories from the seizure which is how I am able to describe the symptoms.

Right now I have had 3 sleep deprived eegs done with no results, worn a holter monitor for 24 hours. I was even in a hospital when the seizure took place and had an mri scan done 5 minutes after the seizure. The only test that showed up any kind of abnormality was the holter and that was just 2 minor 'blips' in the data readout and most likely nothing at all.

For me, the worst of it isn't even having these seizure. I'm learning to work around that. I even drove in the time that I had been having the seizures with no problems. My 10 minute warning sign, which is something that never has failed allows me the time to pull over and put the car in park before anything happens. The hardest part for me is the fact that I cannot drive now, the neurologist gave me strict warnings against it and if I got into an accident, I'd probably be in serious trouble then. I am living with my parents right now because the unpredictable nature of what is happening doesn't allow me to hold a regular job, though I do have a part time job. I want to go back to work desperately. I was training to be an automotive mechanic, and since driving is an important part of the job, I couldn't go back to it even if I could work right after a seizure. My parents are out in the country while all my friends live in the city, which makes things worse even. I miss my old job and I am depressed and I hardly get to see my friends because I can't drive. How do people survive like this?

I guess this isn't the best possible introduction of myself...but thanx for reading this anyway. I just needed to let some of this out. Perhaps some of you have an idea of what might be going on?

-Chris

Well, thanks for the support. I really appreciate this...just having someone who will listen. I didn't realize how much I just needed to be heard. I don't know if that makes any sense really. lol Last night was kind of a rough night too actually. I didn't have a seizure or anything, but it was one of those depressing nights where I couldn't sleep and all I could think of was how much I just wanted to have my life back! I'm sure that I'm not the only one to feel this way either. I got just over an hour sleep last night.

I've been doing some research too, and the symptoms I have in a lot of ways closely resemble a partial simple seizure. The advanced warning that I get about 10 minutes before is probably not right and possibly the fact that the after effects on my muscles last for a couple days afterwards. My seizures cause muscle jerking over most of my body and paralysis as well and sometimes blurred vision but I remember them and I am mentally normal. That seems very similar to the descriptions I've read of partial simple seizures. I see my neurologist on Wednesday, so thats something I will be asking him about as well as the possibility of trying various medications to control, and I'm hoping to stop the seizures. Perhaps if these seizures can be stopped, I can go back to work.

-Chris

Chris, I sure hope they can stop these seizures! In one way it is good if you are having simple partials since you get warning to sit or get to a safer place! I hope the neuro gets things controlled very soon. I have one kid who has simples. The other has generalized seizures.


hang in there and keep working with the doc to find good answers. Many with seizures can still work and lead full lives!

I am actually excited to see the doctor. Maybe I have unrealistic expectations for things. Its just that its been more than 6 months with no real results yet. And since he had this appointment set up just last week, I would hope that he is now going to do something other than just more tests. I'm well aware of the long process that it sometimes is to identify the problem and prescribe treatments. I just feel like I'm going crazy waiting. Being in the auto service industry, a big part of life was driving and I can't wait to get behind the wheel again! Thanx for your support! It makes me feel better just to know that I'm not alone here.

-Chris

Chris,

Sorry I can't offer any suggestions but only tons of my own experiences, some very similar to yours.  As a result I recently lost my job to medical retirement, then disability and had my drivers licence suspended.

 

I was diagnosed with epilepsy in 1979 and now my seizures are controlled by meds.

 

Randy

For those of you interested, so far I have had blood tests done to eliminate diabetes. I've had 2 sleep deprived eeg tests done within the last month. I wore a holter monitor for 24 hours in December and I had an mri scan done as well. By some fluke chance I had a seizure in the hospital the day of the mri and they scanned me 5 minutes after the seizure was over. It came up 'normal', which according to the emergency room doc I saw that day, is perfectly normal for this kind of thing. I had a cat scan done when this thing first started, almost 7 years ago, and I had a sleep deprived eeg then too. At that time I saw a neurologist who said it was migraines. He wasn't very useful and didn't seem to want to really dig into what was happening. It just sorta went away for about 4 years, the came back last year. Since it has been back I have seen 2 neurologists. The one I am seeing right now is the one who is having all these tests done. He is actually trying to find a cause instead of just chalking it up to migraines.

I am up in Alberta, Canada. Free health care...but I think we wait longer for some things.

I really hope they start doing something fairly quickly though. I had another seizure today...its only been 4 days since my last one, so its possible that they are becoming more frequent. I guess I'll see when I have my next one. The muscle spasms lasted for about 5 minutes and the paralysis lasted a couple minutes after that. Its normally not any longer than a couple minutes, but I haven't been sleeping well for the past few nights so that probably has a bit to do with it. They usually are worse when I'm tired already.

-Chris

Thanx for the advice. I am definitely trying to take care of my health before I go back to work. I know that the way it is right now, I wouldn't have a hope of getting through even a week of work in my trade. I think that sometimes I want it so bad that I convince myself that if I just go back to work, things might happen to work themselves out or something. Like maybe if I had a seizure, I would have lost that 15 minutes that it takes and jump right back into whatever work it is I happened to be doing. I had lost some patience, but since the doctor has prescribed some medication, I think I've found enough patience to hold out a bit longer. It'll really help if the medication actually starts working too. Then I'll know, its just a matter of time and I can have my life back!

-Chris

The numerous tests we go thru with normal results can make you want to scream. PCP's don't have a clue when it comes to seizures (at least that's what I've found) finding the right neuro that will listen can amke all the difference when it comes to treating you. In the intital phases before I was dx I started to keep a journal of events, foods, activities, emotional and stress levels. It proved to be very helpful in my dx and my neuro appreciated the record (since we all have a tendency to forget things at times).
I can relate...I am fully aware fo my surroundings and hear and feel everything...just trapped inside my body convulsing and not able to speak. After about 10 min I'm in the recovery phase...which can last minutes to days depending on how severe. Total mental clarity usually takes about a day. The lifestyle changes are very difficult, but they do get better...you won't always be where you are today.
Here's a thought...you may have migraines that are throwing you into a seizure, I have both and I can tell you that it's happened to me before. I have an aura as well so I can generally figure out if it's a migraine and/or if it will turn into a seizure. Since you have aura's as well, keep in tune with your body...sometimes we're our own best dr. (then of course we take that info to the professionals).
It does get better...so give your self time to heal and by the way ask your friends to come out to you for a visit.

cm

Hi Chris, I was reading your post and it brought back alot of memories for me. I started having seizures when I was in elementry school, was dignosed at age 11 and I had sezures for over 28 years. On June 11,2002 I had epilepsy brain surgery for my complex partial seizures, since the surgery I haven't had any seizures, and I now know what it feels like to be free! But for years Chris I couldn't work due to I would start having seizures and I would have to leave my job, and I didn't have transportation. When I was in high school I never told my friends, which was very hard and lonely not having anyone to talk to. But the great news now is I am a H.O.P.E. mentor for the Epilepsy Foundation here in Northeast Tn, I have a presentation to due on March 16th at my daughters high school and the high school that I attended many, many years ago, lol. I will be doing Epilepsy Awareness and trying to educate teachers on what to look for and how to help someone having a seizure.
I was wondering could you explain for me how you feel when you have a simple partial seizure? I wish you the best and I hope that your neurologist will help you get the seizures undercontro. My prayers are with you.

Many Blessings,

Mercyme/Cindy

41/brain surgery
seizure free
Lamictal
northeast tn