My rant!!!!!

[kirsty1327]

Hi everyone,new on here and I'm having a rant because I'm so sick of people asking "how are you?" and I always say "good thanks " but I really want to say "well I feel like crap,how about you?".
I am 36 years old mother of two.
When I was about 13 I can remember a period of time where every morning I would be standing in my bedroom and I would feel like I was standing outside of my body watching myself,everything would be in slow motion,I could hear music sometimes dogs barking.....then it would stop!!!!! That was weird I would think.oh well things to do,never told my mum,just went to school,hung with my friends.
fast forward 20 years and they started again.every morning for six months before work I would be standing in my bedroom and it would hit me.
I was so tired,that when it came to Xmas holidays I was so excited.my husband and kids got in the car and we hit the road for our 2800km car trip.2 hours in and I wake up and we are on the side of the road with my kids screaming as I've just had a seizure(thank god I wasn't driving).we were in the middle of nowhere(Australian bush) so we decided to continue driving.I slept for 10 hrs straight and the next morning I woke up feeling great.we started driving again (we had 10 hrs to get to our destination) and within half and hr I had another seizure and then another.
That was the end of my nice normal life!!!!!!
The country town we were staying at could only do a ct scan to rule out tumors.I had to wait two weeks until I got back to Brisbane to have all the tests done.
So I was diagnosed with TLE with secondary generalised seizures.
Tegretol was first along with insomnia,the feeling of bugs crawlling all over me,irritable bowel,auras continuing then more seizures

Next was keppra which has changed me from a very cruisey person to a bloody mad woman who will snap at you for talking.......IF you can catch me when I'm awake which isn't very often(which I think my family are thankful for given my moods)

Now I'm on topamax and I just feel down right stoned!!!!!!! TOTALLY WASTED!!! And I know a lot of people pay good money to feel like this but I BLOODY HATE IT!!!!!!
Like someone is putting weed in the little amount of food that I am able to eat,because I have no appetite.AND I LOVE FOOD
And another thing........I can handle not drinking alcohol but now I'm on topamax I can't even drink soft drink- it tastes flat!!!!!!!!
RIGHT,THANKS IM DONE.
I'm off to the shops and when someone asks me how I am, I'll be be able to say "good thanks" because this site just let me explode!!!!!!

 

[rich956]

Indeed well you can always give them a fake sob story just to see their emotions.lol.Good Day.!!!!

 

[kirsty1327]

Sorry but I don't actually know how to take your post????? I thought this site was a place for people with epilepsy to come and let their feelings out or ask questions to people who are experiencing the same thing.

 

[epileric]

Welcome kirsty1327

I know how it feels to not only get tired of people asking how I am when they really don't want to know but also having others say "fine" when I really want to know.

I'm originally from Ontario (above NY state) and like N.Y. the people here are pretty direct & honest. That's what I missed when I lived on Canadas West coast.

I was born with my seizures so having them always was my normal life. In my teens I used to wish that I had a "normal" life just so I could see how it'd be different but Seeing how many people here have started having seizures when much older & the stress/anxiety and changes that need to be made I've become grateful to be born with it (at least if I had to have it).

A lot of people need to rant so we even have a padded room here for doing just that, though thanks for introducing yourself in the foyer. I'm sure more people will post & give you the official CWE Welcome.

 

[rich956]

sorry didnt mean any thing negative,please forgive me...sometimes when i talk or type it just seems to come out all wrong....my bad ...I am on Keppra also about 3000 mg daily and prozac for depression ,once again sorry for having it come out the way it did....

 

[kirsty1327]

A padded room- think I'll be needing that from time to time!!!!
And rich956 if my brain worked properly I would have not seen it as negative straight away,sorry.I'll blame it on being stoned (topamax) and angry (keppra)

 

[CQ:)]

Hi Kirsty,

Welcome to CWE & feel free to rant. As Eric has already said the Padded Room is a great place to let of some steam.

I was on Topamax from 2006 - 2008, I found for the 1st 2 weeks I was on the Topmax I had a little trouble concentrating & felt like I was in my own little planet. After those side effects went away the only other side effect I had was that I didn't have much of an appetite which was probably a good thing because before I was put on the Topamax I was a little overweight. I went from approx 90 kg - 70kg (size 18-20 - size 12).
I am currently on Tegretol & Keppra, I haven't had any major side effects from either of those meds & I'm lucky as I have never had any problems with Keppra rage. I have just started to slowly be taken off Tegretol but it is being done very slowly.

Good luck with the medication change & hope the side effects from the Topamax don't last too long.

 

[jgeekie]

I hear you Kirsty. The emotional side effects of some of the meds are a pain in the arse. I found that the the fits of rage and other emotional effects in my case have a different "taste" (only word I have, inadequacy of language) and it took me a few months, but I learned to identify when these things were chemical and when they were me. I also watch the clock after taking meds because at a given interval, I find the side effects spike. I find my fuze much, much shorter 45 minutes after taking my zarontin.

I found some basic mineral supplements helped with this end of things.

Jay