Many Questions

Diseases & Conditions Epilepsy
1
Hello,
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!

"I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm"
Casting Crowns, Praise You In This Storm

Post Edited (dimples83) : 4/4/2006 5:02:02 PM (GMT-6)

2
I started having seizures at the age of  25 and they have know idea what is  causing them.  Now 32 and still no answers to why.  Have they same problems that you are having
3
Hello guys,
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...
 

"I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm"
Casting Crowns, Praise You In This Storm

Post Edited (dimples83) : 4/5/2006 8:11:05 PM (GMT-6)

4
Dimples,
 Hi! I'm Jennifer....I just had my 1st seizure in Jan this yr....The ER doc put me on Dilantin Then my neurologist wanted to put me on Tegretol (carbamezapine)as he said Dilantin causes unusual hair growth in women.... Started the new med while still on the Dilantin.... Anyways---the I had allergic reaction to the new med--which I ended up with a pretty good rash all over my body & face....Now I'm only taking Dilantin---which doesn't "mess" with my head!!!! ALL meds work differently on ALL people!!!!
 
Are you on 3 meds or have you already tried 3 different meds in the last few weeks????
 
By the way, I know how you feel about the whole driving thing--I was so upset when the ER doc said I couldn't drive for 1yr...Thankfully my neurologist corrected him --said I'd only have to wait 6mo....That's still bad though!!!
 
Hope you get the answers you are looking for!!! Take care!!!  ------Jennifer

 Therefore if any man is in Christ, he is a new creature; the old things passed away; behold, new things have come. (NASB)
2Corinthians 5:17

Post Edited (Jennyo) : 4/6/2006 12:36:21 PM (GMT-6)

5

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

6
Hi Jennifer,
I am so glad someone else had a reaction! I am only on one med- Keppra. The rash started while ON Dilantin, but now it is worse....not sure if there is just a 'build up' Of the Dilantin in my system. I am taking the Benidryl but there is no 'relief'. The rash goes 'down', then 'up'. I am confused. about how long does it take for a rash to go away? Anyone??
Thanks guys...other than this, the Keppra is good.

"I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm"
Casting Crowns, Praise You In This Storm

7
Hi 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 tongue
Have a good one!

"I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm"
Casting Crowns, Praise You In This Storm

8
what kind of siezures are you experiencing??? are they full-out long siezures..or are they quick, jumpy, jittery twitchy bolts (usually in ur arms and upper body)? Because I have epilepsy and I have those twitchy kind of jumpy siezures. I got medicine (LAMICTAL) and the same thing happened to me with the rash. It was from going in the usn too much, because i love to go to the beach so i guess it reacted in a bad way. But if you are having my kind of siezures, then it is important to get PLEANTY of rest! I know its hard when you're a teacher and you have to wake up early, but I am 16 so i feel your pain...it sucks, especially when all of your friends want to go out all night and party, then stay up all night long. Also, a lot of things can be controlled by the mind. You mentioned you didnt realize you has a rash untill AFTER you started to think about it. ..jus relax and im sure everything will  be okay...keep me posted..g0od luck best of wishes ..x0xo *gina
9
Dimples,
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 sad   I talk too much!!!!!! tongue -----Jennifer

 Therefore if any man is in Christ, he is a new creature; the old things passed away; behold, new things have come. (NASB)
2Corinthians 5:17

10
I would be concerned about a rash that is still on and off with the benadryl. There are alot of different meds you can try. I would wait a while until the dilantin is out of your system. Dilantin is strond and has alot of side effects so just wait that out a little. I myself am on Keppra alone. I have been on it for about a year and a half now. I am 25 years old. If you have any questions please feel free to ask. WHat dosage do they have you on. Take care, Tracy

 
 

11

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 yeah ! 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 tongue   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!!! scool

"I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm"
Casting Crowns, Praise You In This Storm

12
Hello. I had a Grand Mal seizure that is what helped diagnose me. The neuro and EEG showed I was having some seizure activity in my sleep. Since I started treatment I haven't had any daytime Grand Mals (thank god) but I do believe I have had some nocturnal activity along with alot of spasms during the day on and off. I also read Keppra should be used in conjunction with another drug, but I am only on the Keppra and it worked for me. When I started having alot more of the muscle twitching during stressful times, my neuro tried to up my Keppra but it made me to sleepy in school and could get up there. So I had a hard time adjusting to some of the side effects of the med but in the long run I am okay and and glad this works for me. I am for the most part new to epilepsy and am lucky to have such mild symptoms. Take care and best of luck to you. Tracy