How do you deal with your epilepsy? What medication are you on?

[nataliejx]

Hey everyone, just a little bit about me..my name is Natalie I'm currently 21 and was diagnosed with epilepsy in November 2013. It all started when I went out for a friends birthday on 22nd September 2012, I'm not a big drinker so only had a few glasses of rose when I started to feel really strange, I was randomly dropping my drinks after re-buying three times and not taking a sip. I stopped attempting to buy more but we stayed in the bar. When I went outside to wait for my lift home I felt sick, I collapsed on the street, fitting, foaming from my mouth, hyperventilating and my eyes were rolling (so I've been told). I was taken to hospital in an ambulance, still fitting etc., I was treated really badly by the nurses, while I understand they must get fed up with the very drunk people who turn up on a Saturday night, I think the way they treated me was unacceptable. My parents turned up and the nurses just told them I was 'very drunk', which we all believed, I thought I might have been spiked. If only they'd picked up on epilepsy then! For the next year or so I was experiencing some funny turns, I would get really intense deja vu, feel sick and dizzy, have strange hallucinations, smell things which no one else could, it was an out of body experience..like I wasn't there. I started googling my symptoms and come across seizures and epilepsy. The thought scared me a little so I took no further action and just carried on. It just got worse and worse and started happening 3-5 times every day. I kept a diary and went to my GP who referred me to a neurologist, I had an MRI (all clear), EEG which picked up unusual electrical activity on my temporal lobe. I started my medication soon after and was put on Lamatical, 50mg per day..the seizures did not subside and I was sick and heavy headed. I moved on to Keppra, 250mg per day for 10 days then upped the dose to 500mg per day, I couldn't keep any food down for 2 weeks, I lost 1 and a half stone, I felt severely depressed and had horrible thoughts and wished hard that I wouldn't wake up in the morning. I went to my GP, she has put me back down to 250mg per day and prescribed me Omeprazole. The vomiting continues although not after everything I eat and I still have periods of really intense depression, I don't feel like the same happy person I used to be, I'm miserable, I have no self esteem, I have no energy and want to shut everything and everybody out of my life. I find it hard to tell people how I'm feeling, I don't want them to get fed up of hearing it and try to act like everything is okay. It's far from that. I just don't know what to do!? I have an appointment scheduled with an epileptic nurse in the next couple of weeks and a neurologist in October, it seems too far away to wait with the way I'm feeling at the moment.

 

[Belinda5000]

Hello Nataliejx
I've had the same neurologist going on 24 years in SeptemberI went to quite a few epileptologist epilepsy docs but hey didn't seem to keep up to date with what was going on with me and I always went back to my neuro who's brilliant and will spend as much time with you as he needs to.I've sent away ambulances because of my seizures and if I've hurt and bleeding and need stitiches I'll go to the E/R but I'm not going topay just becaus eI had a seizure.

Life goes on and if I have a seizure in public so be it.I'm not controlled and I refuse to sit at home and wait for my next seizureI just had someone tell me I needed to get life alert because of my seizureI won't pay $40.00 a month which is what I was told it would cost me.I have a life and I'll live it.I was diagnosed when I was 2 and it's been 50 years and and I've had brain surgery it didn't stop my seizures. I've had VNS had three batteries replaced before I gave up on it.My VNS is turned off now and can't be removed.I've taken twenty three different AEDs and now . I'm on Tegretol 300mg3x day Topamax 200mg 2xday
phenobarbitol 90MGbedtime

This is my life and know one else is going to tell me what I should do.I'll take public transit to get around and if I seize so be it. I'm just like anyonre else except when I have a seizure for the few minutes.I'll live my life.

 

[nataliejx]

Hi Belinda
Thank you for your reply! It sounds like your epilepsy is a lot more severe than mine and the way you have described how you are dealing with it is an inspiration! I imagine people without epilepsy don't understand what we're going through and might not have any patience. Like when I explain the deja vu part of the seizure, they always come back with 'I've had deja vu loads of times', trying to explain to them it's no ordinary deja vu, and that it makes you feel rotten is really difficult. But thank you again for your reply. I just need to get on with it. Hopefully the neurologist can sort my medication out and I'll feel normal again.

 

[marika853]

Welcome Natalie!
I was diagnosed in 2006. My neuro had me on Keppra. which I am still taking. I started with auras, deja-vu, nocturnal seizures. All of this was happening when I was under a lot of stress from working full time, going back to school, expecting a grandchild, dealing with bipolar son. My husband was still with me so he would tell me all that I was doing during the nights. Unfortunately, he passed in 2008. Then it went from bad to worse. Also, during this time was dealing with (our friend) Menopause. I was living in a home that my husband and I had built on one acre in rural Fl. My sons were 2 hrs away. Tough time.
Today I am in Clearwater, where my family lives. 3 wonderful grandkids. I'm on 1000mgs generic Keppra daily and 1mg. Ativan to sleep.
Have come a long way but am doing the best I can. I try to stay positive for the grandkids and busy for myself.
Good Luck to You!
M

 

[Belinda5000]

Natalie,
Thank you for the compliment and I hope the best for you.
I wasn't trying to say my epilepsy was worse than anyone else's I know there are a lot of ppl a lot worse off than me


Belinda

 

[Ruth]

I couldn't keep any food down for 2 weeks, I lost 1 and a half stone, I felt severely depressed and had horrible thoughts and wished hard that I wouldn't wake up in the morning. I went to my GP, she has put me back down to 250mg per day and prescribed me Omeprazole. The vomiting continues although not after everything I eat and I still have periods of really intense depression,

Hi Nataleljx, Welcome to CWE. This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.

Sometimes, I have had problems with keeping food down. When I am on a medication that gives me that problem, I wait an hour after I eat and then I take my medicine. Then I am all right. If it continues take some Pedialyte, only 1/4th of a cup, no more. That works for me.

Depression, horrible thoughts and not wanting to wake up in the morning are side effects of the medicines you are on. Be sure and tell your doctor about these symptoms. I look up the side effects of a medicine on the internet or ask my pharmacist. Get information on all of your meds.

It sounds like you are going to have to quit drinking alcohol. I hope you do, that can make the symptoms worse.

Keep us updated so we can try to support you. We are not doctors so we cannot give out medical advise. Medical information, yes. :e:

 

[valeriedl]

I don't think anyone is trying to say their epilepsy is worse than yours, they just want to let you know what has happened to them and how they deal with it.

I had my first seizure in 2003. Mine are usually semi partials (auras) and complex partials. I have around 7 complex and I'm really not sure how many semi because I don't realize they are going on at times. I may have one tonic clonic a year.

I've gone through several different meds and dosages through the years. Some caused more seizures, some worked but I couldn't handle the side effects and some didn't help at all. It takes time to figure out what meds and dosages that you should be on.

Try keeping a diary of what's happening. When the seizure is, how long it lasted and what you did during it. This helps the dr see what's going on.

It's great that you are going to see a dr that deals with epilepsy, GP can only do so much because they may not completely understand what's going on and know the best way to help. It might be a good idea to call the neuro's office and see if they have any appts sooner, do it every week if you want. Or ask them if they get one if they could call you so you can take it, sometimes they forget to do that though.

Having a supportive family and friends helps a ton! All my family is around but some of my friends have left, if you want to put it that way. I don't know if it's because of the epilepsy or if it's because I don't drive (they all live around an hour away) and they don't want to make an effort to get together. I know it's the ones that are still around are my true friends. We don't get together every week but they call or text me that much.

You'll beable to talk to people on here that are going through the same things you are. You can ask questions and give answers. It's a great place.

Nice to meet you!

 

[nataliejx]

Thank you for your helpful replies everyone! Symptoms still persist but I'm seeing my GP tomorrow so will keep you posted.