Many Questions

I am new here and I need some answers if possible. I am 23 years old and had my first seizure 3 weeks ago. I was sleeping, and I understand brain functioning changes in our sleep. Well, what confuses me about that is the next morning I got up around 8 am, was up and moving around, then decided to go back to sleep for an hour (had church). Shortly after, I had a seizure! I am wondering if I had stayed awake would I have had a seizure or not?? Both times I went to the hospital and the tests all showed nothing. I went to a neurologist, had a 2 hour MRI- with and without contrast. The results are that I am as healthy as humanly possibly! I was started on Dilantin at  the hospital, then switched to Triliptal by my neuro. I took that this past Sat. and was fine until late afternoon. I felt like I was having a seizure, but I think I scared myself when I starting feeling the natural 'adjustments' so I must have had a panic attack. Well, the neuro. said to take the Dilantin until Mon. I did, and yesterday, (monday) I saw him again. He asked me if I had a rash. I said no..but got to thinking I have been itching like CRAZY and my legs have had bumps all over. I thought it was razor burn...then I got home and decided to take a bath before starting the new meds, Keppra. As I was sitting in the tub, I saw a rash ALL over my body!!!  I freaked out but told myself it was the hot water. It went down and I took my first dose of Keppra and went to bed. Today, took my morning dose....fine. Then I went outside and I saw ther rash- which was worse!!! I guess my question is this...could the rash be from the dilantin? I do not believe it is from the Keppra since I had not taken it last night when I noticed it. OR could it be the one does of Triliptal...OR is it a weird reaction to heat, (bath, TX weather) mixed with the meds?? I called a pharmacy and she said go to the ER b/c a 'rash' is not common. well, it has gone down so i am not going to the ER!! PLEASE help me! I am so sad to not drive, I am in college, an assistant teacher and I live in the middle of my job and school; 45 minutes to each!! I am sooo scared of having a seizure while awake and having it be painful. I am giving myself panic attacks by thinking of 'possibilities' that might happen.... I feel paranoid that every twitch and jumpy movement is a seizure!! I'm sorry this is so long...thanks for reading!

Thank you for the replies...I finally talked with my doc about the rash and he said to take an antihistimine and wait a day or so to see how it goes. The rash is off and on, I mean you can see it at all times, but sometimes it is very light and not as itchy. The doc thinks it was the Dilantin and to wait for it to get out of my system. Has anyone disliked Keppra...any weight gain?? I asked him for something that does not have this as a side effect, so he better not be lying! (I am barely 5 feet so I do NOT  want to get any bigger, I am at 110 right now). Please reply just to let me know your own experiences and opinions. This is very scary and new. Today was SOOO much better mood-wise; the Keppra is better than the Dilantin as far as that goes...anyone agree, disagree?? Thanks guys, hope all is well...

Dimples,

Glad to hear the Keppra seems to be working. I've been on it for ages with no noticeable benefit but drugs work differently for different people. No weight gain in my case, which was rather a shame; I'm as thin as a promise and have had people calling me 'lanky bones' for my entire 32 years. It did make me feel very drowsy for the first few days but that soon went away.

I totally sympathise with your constant anxiety about having an attack. It's very understandable when you have something which, by and large, seems able to strike any time without much warning. All you can do is try not to focus on it too much. For most people at least, epilepsy only takes over our lives if we let it and the worst thing we can do is be constantly worrying about it. Which is, of course, easy advice to give out. I know all this and I'm still forever brooding about my next attack myself.

Take care,

Andrew

Thank you- you are right...I am trying to calm down about the seizure thing, but with this rash, it is hard to forget about due to the constant itching! What has your situation been like? When you said the Keppra has had 'no noticeable benefit', what do you mean exactly? You still have seizures regularly? So am I considered 'epileptic' now? I went to 3 of my 5 classes today and it was ok, just been awhile since I went to school. I miss being there and interacting with people! (I go to Sam Houston State)...it was nice to be in the 'world' again

Have a good one!

How long have you had the Rash????

How long ago did you quit taking Dilantin????

Weren't you on another med also??And how long ago did you stop taking that????

You may want to keep a journal on this---or just mark your calendar anytime you change or have to UP/LOWER your meds....

At first, my allergic reaction was severely itchy eyes & sneezing, which started the day after I started the new meds.......1 week & 2 days of being miserable, I noticed a rash on both of my upper arms....I called my neuro the next day--he said I was definately having an allergic reaction & to stop taking those new meds & start taking benedryl immediately!!!!!!!!

The rash got worse before it got better, but was totally gone within 7-9 days....

Sorry   I talk too much!!!!!! -----Jennifer

Hi everyone,

WOW, thank you all for the replies! My brother came into town so I have been 'checking in', but haven't had time to sit down and respond. Obviously this is for everyone to read, but I like to respond to ppl, so I wrote your names...this is just a 'side-note' that I am not trying to exclude anyone!!!

Jennifer, Thank you for your responses, you always bring insight to what I am going through. I think it was the Dilantin that I was 'allergic' to. The rash seems to be going away. Are you seizure free now? My doc said epilepsy and having a seizure is the same thing..I just thought some people were born with it and others experience trauma to the head so it was a permanent thing....I hope you are doing well! Oh, I had already tried 3 meds in the course of 3 weeks or so...that's why the rash was/is so hard to pin-point! I had the rash for about 2 days while on Benidryl...I was thinking it would cease after a few hours! When you told me 7-9 days, that helped me calm down and I was like, ok, I can wait it out! So it seems to be better ! I LOVE your 'signature', that Bible verse is beautiful....thank you.

Hi Gina, my 2 seizures were about 1 minute from what I am told, (since I was sleeping). I think I was more like a frozen person, my muscles were tight and my eyes rolled back and stuff came out of my mouth, but no loss of bowels, thankfully. I think they are called partial seizures or something like that. You are completely right about being in the sun! That is when I started to notice I was itchy and I could SEE the rash. I was laying out by the pool studying and I was itching like crazy, but i didn't think to actually look for a rash- I was unaware of that side effect until the doctor ASKED me if I had one...then I started to notice it! Duh   So then I was going to work and taking the class out for 'recess' and the sun was making it worse. So thank you for pointing that out. Yesterday I didn't take any Benidryl and I was in the sun but my rash was not bad- I have little 'bumps' that are like 'leftover' I guess but not the splotchy itchy stuff! But you have helped me, thank you!

Hi Tracy, I am on 500 mg in the morning and 500 at night. (Keppra) How do you like it? Any side effects? Have you always had seizures or is it fairly new to you as well? Have you had any 'breakthrough' seizures? What kind of seizures do you have? I have heard Keppra should be used in conjunction with another med, but since I have only had 2 seizures, (one night after the other) they think it should be fine for me...my MRI results were basically perfect they told me so we'll see! I could use any info you want to provide! Thank you!!!