why me??? - Epilepsy Message Board

huntermeg · 07-03-2003, 05:32 PM

Hi All,

My name is Meg and I'm 22.This is my fist time on the board.I had my first grand mal about 4 months ago. I spent 3 days in the hospital while they ran tests. The lower back part off my brain works slower than the rest of my brain. I've had it all my life but never knew it. When I was little I got in trouble for not paying attension but could never do anything about it.I've always had headaches as long as I can remeber, I guess they were warning signs. I've had about 4 more grand mals since my hospital visit. They have me on Keppra it makes me very weak. My doctor keeps highering and lowering my dose so I haven't been able to work in almost a month.I'm afraid I'm going to loose my job. I'm always tired, weak, I can hardly walk and I'm always dizzy. I hope they get my dose right soon so I can hopefully get over the side addfects. I also dont like my doctor she's cold and not vert patient. She pushes me off on who evers closes to the phone, I think. I fell so alone, I've cut my self off from my friends and family. I'm a very independent person and I have trouble relying on people. I look out my window its so nice out side, on a day like this I would be out side walking my dog, going for a drive, or hiking in the woods. Instead I'm stuck on the couch and can bearly walk to the bathroom. This has been very hard on me. Thank go for my husband. He does everything for me and always checks on me 3 or 4 times when he's at work. I feel bad for him, I've made him my only out side contact and my only friend for right now. He deserves to have a life to, but I'm scared and don't know what to do. He never complains! please give me some advice or hope... I've never been so scared in my life

huntermeg

curse · 07-03-2003, 06:55 PM

Hi Meg-

Was anything found in these test? How much Keppra are you on?
I hope that this Dr. you are talking of is indeed a neuro. The max dose is 3000mg, but I have read other board members take more than that. Dr.s like to stay @ 2000mg though. Personally, if I had a Dr. like it sounds you have I would drop her like a hot potato.
I have been on Keppra for over a year. Prior I had been on dilantin & neurontin. I averaged 5-6 seizers a year. Since on Keppra I have only had 2-3 minor auras. I can legally get my drivers license back. I lost it in 90' with my first seizure & never got seizure free until now.
If I were you, I would spend that free time you have scouting all the info. you can about the seizures & your type, harp on that Dr. until she starts helping or dump her. Get a copy of all those tests they did, so you know what you're looking @ & should expect.
Did they say what caused your seizure? Don't let them shove you in the back seat. Make them earn their pay.
Keppra can cause depression & make you tired. It had me sleeping for the first few months. It will take time for your body to adjust. Make sure you are eating too. You will only get weaker & tired w/o food. Handy peanut butter is quick & full of protein.

violarose · 07-03-2003, 06:56 PM

I think we have all said 'why me' before. it just doesnt seem fair. u dont have to be as helpless as you feel. 1st you can change doctors. a compassionate doctor -hard to find, lol, can make this process easier. I know that u are 22, and at this age independance is very important, but if your friends are able to help you, let them. they dont have to do much, just listen to you. its hard, espicially the first month, oh my gosh, the meds make u feel like a zombie. your body should soon start getting used to them, i wont say u wont be tired, but u will be getting some relief soon i hope. (()))

Jodebra · 07-04-2003, 01:51 AM

Hiya,

I do know how you feel,only a yr ago I found out that My front right part of my brain is badly damaged and wont be able to work as well as it should.my neurologist put me on some med and I had lots of side effects with it,she changed me over to keppra and I found it a whole lot better to what i was on before. The thing is I know that you may think your doctor is messing you around but everyone is different with Epilepsy and I think your doctors trying to find you the right dose,i know it can be very tiering as I began on 25mg and in 2 months ended up with 750mg every couple of weeks I'd had to higher my dose i got tired and moody because I'd feel weak and tired but i had to force myself to go to work. Now I'm on 3000mg a day and my body's getting used to it. why don't you talk to you doctor or neurologist about how you feel about the way the change of med is giving you side effects they will notice that its not doing you anygood so they will find a way that would help you alot better then before.Your Job, they should understand what your going through so don't be to hard on yourself thinking that your going to lose your Job.As for your MAN, I'd wouldn't worry about that either as he doesn't seem to mind doing things for you if he did he would've told you.He seems to know what your going through and just wants you to feel better and help you out.At the end of the day don't stress yourself out,things will get better I promise it may just take time.Take care