hello from me

[xxspellsxx]

hello folks, my name is ella, and I have recently been diagnosed with epilepsy. I am both confused and frustrated and feel as though my life has been taken from me. I started have seizures about 8 months ago, completely out of the blue, never had them before. I was taken in to hospital and started on lamotrigine. This made things a lot worse, and i suffered a lot of tonic clonic seizures. i stayed in hospital for a week and they did an MRI and EEG. the MRI was clear but the EEG showed when i was having seizures. so they changed me on to Keppra. they have been increasing this since then, and it seems to be working mostly. I have tonic clonic and complex partial seizures, which for the most part seem to be under control now. I seem to go a few weeks with nothing, then i have a terrible time for a few days. I keep a diary of how Im feeling and when I have a seizure which we seem to think is stress/anxiety and sleep deprivation related. I have been reading a lot on this forum but have not been brave enough to join as i have no clue about epilepsy and feel i couldn't offer much advice. but now this is just going on and on i feel that i need some help and support from people going through a similar situation. I have two young children, and we as a family are trying our best to cope with this, and put up a happy and upbeat front, but I'm screaming inside. i hate it, i lost my driving license and car, and my freedom. please tell me it gets better with time. thank you for reading if you got this far. ella

 

[alice123]

Welcome to the forum. Everyone here knows what your going through, I for one cant give much advice as I have not been diagnosed yet.

 

[CQ:)]

Hi Ella,
Welcome to CWE. Feel free to have a look around some of the other threads.
There are a lot of people here with some great advice & we are all here to support each other because after all we all have epilepsy in common (some of us have epilepsy, others are carers or loved ones to people with epilepsy).

Do your dr/neurologist have any idea why you suddenly started having seizures?
I think that in some cases some people with epilepsy never know why they started having seizures.

 

[xxspellsxx]

they have no idea, the first one i was falling asleep and had a tonic clonic. my husband thought i was dying. we had not had anything to do with epilepsy before. he called an ambulance and i was taken to hospital. they thought it would be a one off, and i went home. then a week later i had a tonic clonic in the day time, and from then on they started happening daily, sometimes i would have lots, others one or two. thats when i had to go and stay in hospital and the started the keppra. then they stopped happening as often, and now i can go for a few weeks with nothing. its so so bizarre, and we have no idea why this has started happening to me. I healthy and fit and very active, i eat a good diet, i don't smoke, iv not drank since before we had the children. the only thing that has remained consistent is they happen following sleeplessness, stress/anxiety. all a little hard to avoid with two babies, and worrying about having a seizure all the time. sorry to be so down about all this, but it literally has ruined my life.

 

[CQ:)]

they have no idea, the first one i was falling asleep and had a tonic clonic. my husband thought i was dying.

Seeing us have seizure must be so scary for our loved ones, especially if it is the 1st time they witness a seizure.
I had my very 1st seizure when I was 9 months old & it was a grandmal (tonic clonic). I think I was in my cot at the time & it was my big sister who noticed something was wrong & she went to get my Mum. I can only imagine how scared my family was.

.the only thing that has remained consistent is they happen following sleeplessness, stress/anxiety.

Stress & fatigue are 2 common seizure triggers for a lot of people.

sorry to be so down about all this, but it literally has ruined my life.

No need to be sorry, it's ok to feel pissed off about having epilepsy.
I am currently seizure free but when I couldn't get my seizures under control I tried not to let the epilepsy affect my life too much but I still have the odd days where it got me down.

 

[xxspellsxx]

thats fantastic yours are under control! mine are starting to be, and i know in the grand scheme of things, my situation is very new, and my neuro is a wonderful lady and very supportive. she is also very hopeful the AEDs will control me. just about finding the right dose of the right one. I'm having an ambulatory EEG tomorrow, for the week, but i can come home in it, just have to go to the hospital each day to get it checked. she seems to think i have two types of seizures, and wants to record a weeks worth of EEG. lets put it this way christmas shopping will be interesting! I'm hoping a hat will cover it up!

 

[alice123]

I dont have time to be investigated right now. I'm glad you are getting it sorted! I just have too much going on and after Christmas I start a 5 week work experience. which will stress me up big time.

I need to go back to the doctors and say this is what I think I have and I'm worried about driving. so hopefully they can do some simple tests to begin with.

 

[xxspellsxx]

if i was you i would go to the doctor, even if its just for a talk and to get the ball rolling. sometimes appointments and such like take a while to come through, and you might be looking at after christmas any ways. I had to give my driving license back to the DVLA and must be seizure free for over a year till i can drive again. at current I'm still having seizures so its a long ways off. Its actually not as bad as i thought it would be, not having the car, my family have been fantastic support and i can get a lift if needs be. at the moment i cant be on my own, as i have two young children and its just not safe. iv smashed my head soooo many times now everyone is paranoid and on "fit watch" 24 hours a day. so frustrating!

 

[CQ:)]

thats fantastic yours are under control!

Thankyou .
I 1st started having seizures as a baby & took tonic clonics from 9 months until I was 3. I had no more seizures until 2002 when I was 24, after that I mainly had auras (or simple partial seizures) & complex partials.
The MRIs I had found that I had scarring my left front temporal lobe (most likely from the tonic clonics I had as a baby but no one knows why I went so long in between seizures).

My neurologist tried me on 5 different Anti Epilepsy meds (since 2004 I have been on at less 2 meds at a time) but none completely controlled my partial seizures. After putting me on the 5th med my neuro said there wasn't much more he can do for me, suggested I think of having brain surgery.
After seeing an epitiologist (neurologist who specialises in epilepsy) I went through the pre surgery tests & had my surgery in March 2011 where the neurosurgeons removed the scarring.
I have been seizure free since my surgery & I hope to remain seizure free but I know there is always a chance I could have another seizure so I am happy with every day I go seizure free .

 

[xxspellsxx]

now that is fantastic! you must feel like a new person!

 

[CQ:)]

my neuro is a wonderful lady and very supportive. she is also very hopeful the AEDs will control me. just about finding the right dose of the right one.

It is always great if you have a good neuro who is very supportive & helpful.
I am lucky I have 2 great neurologists, the neuro I see in my home town I have been seeing since my seizures returned in 2002. He is very nice, listens to what I say (although there have bee maybe 1 or 2 times I didn't agree with him lol) but has a good sense of humor.

At the moment I am seeing a neurologist through an epilepsy clinic at the hospital where I had my surgery. I go see him for regular checkups. He is really great, he is a younger neuro (in his early 40s), is really down to earth with a good sense of humor

When it comes to the AEDs we are sometimes like 'guinea pigs' & it is all trial & error until we hopefully find the right one to control the seizures.

I'm having an ambulatory EEG tomorrow, for the week, but i can come home in it, just have to go to the hospital each day to get it checked. she seems to think i have two types of seizures, and wants to record a weeks worth of EEG. lets put it this way christmas shopping will be interesting! I'm hoping a hat will cover it up!

Good luck with your ambulatory EEG, there are other forum members who have had ambulatory EEGs so they may be able to give you some tips.
I have only had regular EEGs at my local neuros clinic & a Video EEG at the hospital where I had my surgery.

 

[xxspellsxx]

just having a look through the site for some others that have had the ambulatory EEG. I think it'll be fine, so long as the kids don't pull the thing off!

 

[CQ:)]

now that is fantastic! you must feel like a new person!

I was lucky enough to have a good recovery . Apart from the seizures one of my main issues I had before surgery was tiredness. Before my surgery I would quite often get tired which was a combination of meds & seizures so it affected my work & I had trouble doing FT work. I am not working at the moment but do alot of voluntary work & I don't get as tired as I used to.

Before my surgery I didn't drive, in fact I never had an interest in driving. Even now that I am currently seizure free & my neurologist could sign me of to get my learners I still have no interest in driving. I live in a pretty central area where I can walk to most places & there is usually buses available for the places I can't get to by foot.

 

[CQ:)]

just having a look through the site for some others that have had the ambulatory EEG. I think it'll be fine, so long as the kids don't pull the thing off!

Here are some similar posts which may help .

http://www.coping-with-epilepsy.com/forums/f20/ambulatory-eeg-advice-18652/
http://www.coping-with-epilepsy.com/forums/f20/24-hr-ambulatory-eeg-17487/
http://www.coping-with-epilepsy.com/forums/f23/ambulatory-eeg-13312/

 

[xxspellsxx]

thank you! just read through theses. people tend to stare at me any how. so nothing new

 

[Cardones]

Hi
That is odd and very bad luck seizures have started out of the blue seemingly frequently. How old are you do you mind me asking?

I think everyone here understands the anxiety and stress you are going through. Just to say that modern drugs are very good and you stand a good chance of being fully controlled and it's a very good start to have a neruologist you like.

 

[xxspellsxx]

not at all, I'm 30 very independant befor all this. now I have someone with me all the time as we just dont know what the heck will happen day to day. saying that, I'v not had anything now for 4 days. I just hate the feeling of not knowing, could it be possible i never have one again? or will they keep on coming. such a frustrating thing to have!

 

[CQ:)]

I just hate the feeling of not knowing, could it be possible i never have one again? or will they keep on coming. such a frustrating thing to have!

Do you get an aura before your seizures?
Unfortunately epilepsy is a very unpredictable medical condition as we never know when we will have a seizure.
Only time will tell how well you are able to keep your seizures under control.

 

[xxspellsxx]

I'm still not sure, I think I know. when I wake up in the morning some days I feel "normal" other days my head is my own private hell, i feel sick, keep repeating myself, struggle to get words out and I forget everything. on thoses days I'm very likely to have a seizure. so I guess thats a bit like an aura, but just befor the seizures I have no idea. my husband and my mum say my mouth twitches and eyes roll befor going stiff and hitting the floor. so they both know when it'll happen, if there looking at me. most of the time they just hear the thud of me falling and a groaning noise I do. I am black and blue with bruises where I smash down. I'm sure people think my husband whacks me one!