new to site

[jamesmills]

Hello all ,
My name is james and have suffered from epilepsy for nearly 22 years due to being run over at the age of 6 that caused a serious head injury ,

i have been diagnosed with various different types of epilesy over the years and have spent a lot of time in and out of hospital , finally about 4 months ago i saw a nurologist and was diagnosed with complex partial seizure, non convulsive epilepsy .

I have had various EEG's, MRI's and others i can not remember due to memory loss and all come back clear

I am currently having 50 + aura seizures a day plus 3/4 major seizures which involve me going uncontious,

i have caused myself injuries in the past due to colapsing down stairs or on to solid floors, recently my seizures have become more frequent and serviour which is starting to cause problems as i have 2 children aged 2 and 9 and have had several seizures while i have been looking after them alone at home .

My partner is my rock and has helped me through a lot as she attends all my appointments with me as i struggle to remember details the doctor gives me ,
I have found that i can retain usless information but struggle to remember important things like appointments, birthdays, conversations etc.....

All though i have the support of my partner it is very difficult for me to explain how it feels when i have a seizure as i do not remember anything that happens when i seizure, I recover with headache and confusion and feel physically and mentally tired.

I am struggling at the moment due to changing medications again
i have joined the site to hopefully meet people that understand how difficult it can be at times to deal with the condition ,

Sometimes i feel very angry , frustrated and upset that i am unable to control my condition .

James

(sorry about the spelling )

 

[Nakamova]

Hi James, welcome to CWE!

You've come to the right place, folks here truly "get it" about epilepsy -- the anxieties, the injuries, and all the frustrations with seizures, meds, and the health care establishment. I hope you can explore all the forums here and feel free to post and chat.

Best,
Nakamova

 

[valeriedl]

You'll be glad you joined this web site. There are alot of people here that can relate to what you are going through and give alot of helpful advice.

Alot of my seizures are similar to yours. When I am seizing I'll blank out and not remember anything that happens during it. When I come out of it I'll have a horrible headache and just sleep for the rest of the day and alot of times the following day also.

My husband is very supportave of me. He also comes to all my neroulogist appointments with me. You are seeing a neurologist, right? If you feel that the treatment he is giving you may not be right then you might consider seeing another neurologist.

I've had epilepsy for about 8 years now. At first I was having seizures like crazy. I went through many different medicine changes. Lately I've been doing pretty good. I'm still on alot of medicine and I also have a vagus nerve stimulator which has helped with the seizures very much. I'm only having around 4 a month now, give or take.

Most of my seizures recently I haven't been completely blanking out during, however I don't realize that I had the seizure until after it's over. I'll either have a headache or see what I was doing at the time of the seizure and find out that I had done it completly all wrong.

I have horrible memory loss also. My long term memory, usually something 3 months or longer is about gone, but my short term is alot better than it was. I find if I keep a sort of diary it helps. Use a pocket calander or something like that and write down things that you've done that day and also you can keep track of up coming events in it also.

Keep track of your seizures in it also. Write down how long they lasted, what they were like and any other type of info that you may feel important regarding it and talk to your dr about them. This could help alot with trying to figure out the best was to be treated.

Ask lots of questions on here and you'll be sure to get some great answers, and I'm sure you'll probably beable to give other people some help too.

Good to meet you!

 

[jamesmills]

Its a pleasure to meet u too Valeriedl,


may i ask what medications u take at the moment , at the moment i'm on 14 tablets a day,
i take 1,500 mg a day of keppra and am also taking 200 mg of lamotrogine, 20mg of fluoxatine to help fight the side affects of depression, the only problem is that fluoxatine lowers the threshold of my seizures which is difficult to handle but my doctor is unwilling to try anything else due to my condition and thinks i may end up with worse side affects ,

not sure if i am the only one that feels like a guniea pig , after 22 years of tests and medication and i still feel like i'm at the start

 

[valeriedl]

I take:

Depakote 500mg - 4 pills a day (2am and 2pm)
Tegretol 400mg - 4 pills a day (2am and 2pm)
Keppra 750mg - 4 pills a day (2am and 2pm)
Lamictal 150mg - 4 pills a day (2am and 2pm)
Lamictal 25mg - 2 pills a day (1am and 1pm)
Plus I have the vagus nerve stimulator.

It hasn't even close to 22 years like you have gone through, but it took forever before the neuro stopped changing medicines and dosages around. It's been about a year and a half now that the meds have stayed the same. The vagus nerve stimulator is the only thing that is being messed around with now.

 

[Cint]

not sure if i am the only one that feels like a guniea pig , after 22 years of tests and medication and i still feel like i'm at the start

Hi James,

I've had epilepsy now for 30 years and have been through tests, medications, brain surgery, more medications and now have the VNS with medication. I also was on a drug study back in the '90's, so I, too, have felt like a "guinea pig". My seizures are refractory, complex partial with secondary generalized tonic- clonic seizures, so I will probably not ever have them fully controlled, but at least they are now better controlled than they once were. I have them now maybe once every 6-8 months instead of 4-5 a day.

 

[Crash]

Hi James
We aint to far apart in the old miles department,its great u found CWE im sure u will settle in well here.I think this is a great site,as Nakamova said you wil find everything on this site,all the best.

 

[Endless]

Hi, James,

Welcome to the forum!

 

[marlena23]

Hi James,
Welcome to the site. I think you will like it here. It feels good to talk to other people who have epilepsy and "get it".
Everyone is so friendly and helpful.

 

[Chel]

Hi James

Welcome to CWE. I've been here less than a year (diagnosed at the end of Sept last year) and this is a wonderful community!

cheers