New, confused and learning to cope w/seizures

[Suburbanmom]

Hi, my name is Misty. I am a 38 year old and mom to three kids. I had my first seizure about 3 weeks ago while out shopping. Have never had anything like this ever happen to me. Was admitted to the hospital and after performing an EEG was put on 1000 mg of keppra. Suffered another seizure a couple of days later while still in hospital so dr. Doubled my keppra. Have been seizure free until Friday night when I suffered another seize while we were outof town. Paramedics came but, I opted to not go to the hospital. Still feel really out of it and have slept a ton all weekend. How do you know when to go to the hospital and does anyone else have seizures and have no idea why? Thanks so much for any feedback you may have.

 

[epileric]

Welcome Suburbanmom

I"m starting to think most epileptics don't know why they have seizures. I was born with mine it wasn't until I was 39 that they finally figured out why (lesion on the hypothalamus of the brain).

As far as treatment goes it really doesn't make a difference whether they know what causes the seizures or not, you're treated according to what kind of seizures & symptoms you have so don't think that finding out why will help that way. I'd had seizures for so long that by the time I found out I really didn't get much (if any) satisfaction from knowing the cause.

Hopefully though the doctor is going to send you for an EEG, MRI & all the other fun tests to try to learn as much as possible about your seizures.

Here's a page that might help you figure a few things out. Any questions or comments to add please feel free to ask our comment.http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

 

[sbncmo]

Hi Misty. Welcome to CWE. How are you handling the Keppra? Any side effects? It seems that it is not working for you yet. You may need an increase or a different med.

What type of seizure did you have? I'm assuming that you had tonic clonic since you were hospitalized, but again, that is an assumption. I had grand mal & absence seizures as a small child, but these stopped by the time I started school. Then when I started college, I started having other type. I now have 7-8 different types of seizures.

It can be very difficult to know when to go to the hospital. The general rule is if your actual seizure lasts more than 5 minutes, get medical help.

Sometimes it is had to differentiate the pre-seizure, the seizure & the post-seizure (I know those phrases aren't correct, but I'm still learning too). A few weeks ago I had my sis take me to the ER because I started feeling really strange, not thinking clearly. She arrived about 20 minutes after I started feeling that way. By the time we reached the ER 10 minutes later, I was in a full-blown CPS - I couldn't talk, I couldn't comprehend the questions the staff was asking, they had me changed into a gown without me knowing it. Then I had an autonomic SPS. About an hour after I was admitted to the ER, I started getting my thinking back, only to have a motor SPS. This was the first time I've gone to te ER for seizures even though I've had days of having myoclonics every 1-2 minutes all day long. Sleeping after bad seizures is very normal. It took me 3 days to recover from the seizures that sent me to the ER.

I have no idea why I have seizures. The simple fact is that epileptic seizures are caused from the brain misfiring. For some people, head trauma or genetics may cause seizures. Others have no idea why they have them.

There are many AED's out there. There are AED's used to treat specific types of seizures. I strongly recommend that you do lots of research on seizure types & treatments. This will help you work with your doctor to get the best treatment for you.

I hope this helps. Let us know how things go.

Shelia

 

[Cint]

Hi Suburbanmom and welcome to CWE,

I started having seizures when I was 23 years old and we don't know why. I've had SP, CP, and TC seizures and have tried many AED's. The only time(s) I've been to the the ER due to epilepsy is when I had my 1st TC seizure and was seriously injured from it and one other time when I went status (seizure lasting more than 5 minutes). Usually, there is no reason to go to the ER unless you are injured or you don't come out of the seizure in a minute or two.

I'm currently taking Keppra- 3000 mgs/day, along with a small dosage of Topamax, and have had some breakthrough seizures. None of the drugs have worked 100% for me. Initially, all AED's will make one very tired, sleepy, etc. and they all DO have side effects. You can check out this website:www.drugs.com for info on your specific medication. And as Eric has said, hopefully your dr. is sending you for an MRI and more testing if needed to find out what is going on.

Hang in there!

 

[dfwtexas]

Hi and welcome to our group. It's a great way to learn about E and get a lot of supportive feedback. I got diagnosed at age 47 with E, I have simple and complex seizures. There is no proof positive reason for it, but a few years prior to my seizures, I had a severe trauma to my arm. It resulted in multiple infections, had port line with 24/7 meds for two years. Doc feel either infections, meds or combination did neurologic damage to start seizures. But they also said that 80 percent of people diagnosed never know the cause. I have been on Keppra since my diagnosis. I was started at 500 mg twice a day but my amount has been slowly increased so I have been on 1250mg twice a day for over a year now. I also have been seizure free for 14 months....my longest period!
As much as you may want to know why, focus on learning your E, your triggers and learning about what you need to know from your doctors.

 

[Endless]

Hi, Misty,

Welcome to the forum!

We don't know why my seizures happen, either. I have simple and complex partials. They started when I was young, but they were only a couple a year so I ignored it. A few years ago they just took off and started happening several times a day. Who knows why.

I have some guesses - we think my father had seizures, and I have a bunch of mild head injuries. But who really knows? I figure since my CT scan and MRI are fine (no tumors or other fixable problems), and all the cardiac, diet, metabolism tests came out fine, then I guess it really doesn't matter why they happen. I'd still be on these darn medications.

 

[RobinN]

Welcome Misty -
Using your intuition, was there anything that you might consider out of the ordinary prior to the first seizure? Any other medical considerations?