Stress and epilepsy

Hello,

I have no idea which section to start writing in. I thought since this section i feel mostly relates to me, it would be a great place to start!!

Im 20 years old, 21 in april yet i feel like im in a downward spiral, struggling for air.
I thought i had everything i ever wanted, or needed, i had a great job, with great prospects, good wage, i paid for my car, i have a full motorbike and car license, im engaged to a great person, my future seemed to be set. I was a very independant person, and i loved it! im a typical Aries, i worked in the purchasing department, i loved the thrill in the job, i loved the stress, i loved the fact 9-5 seemed like nothing. Things got worse when the company employed a new manager, one which thought everyone owed him something, every company has to have a twat i suppose, anyway i didnt get on with him, so i stressed more and more, to the extent where i cried every night, anxiety pains in my chest (having asthma doesnt help) and pains in my head constantly in the end the decision was to move me into admin, or stay where i was, so obviously i moved, now still faced with a twat in my sight all day mon-fri, i am doing a job i dont enjoy as much as i did, but its better for my health, while all this was going on, i was having tests to see whether i was epileptic, recently i found out i was, again, adding more fuel to the fire, i had a beloved pet rabbit who would have been 9yrs this month passed away on 27th december 08 i had him the best part of my teen years. on saturday i had another fit, first one since 2003 while on lemotrigine, since then i have been off of work, i've lost my appetite, my body aches, i have flu like symtoms, headaches, i feel like my legs are going to go from beneath me etc, the neurologist said to carry on, so i carry on, i now feel disabled as i cant be as independant as i was, i have been told, there are worser people out there than me, who have no legs, or have no arms, who cant think for themselves, etc

some times i have thought of taking an overdose, but id leave my family and my fiance behind, i cannot be that selfish, i am not as strong as people think i am.

i dont know what i need right now, or what to do, i have never felt so ill before, i just want it all to stop, i want to feel the way i used to feel, i want to get out of this horrible spiral i just dont know how.

HELP!!!

i have just read your stories and it is dreadful that you have epilepsy at such a young age,i had my first seizure when i was pregnant with my last baby at the grand old age of 39,you can only understand how epilepsy affects your life unless you have it.everything from being alone with a baby or child to going to work,dealing with the side effects of tablets,finding the right tablets,for the last few years i have been on lamotrogine which suited me well until my gp decided it was time i gave them up.and of course i had another seizure,so if you get this advice from your gp think carefully,i have been on other tablets before that didnt work for me,so carry on until you find the tablet that suits you.i think having epilepsy leaves a mark on your life,you never feel like you can relax if your going out or holidays or working,plus you always wonder what other people think about you having it and simple things like will they leave their children come to play at your house,
but on a brighter note im doing well and i managed to buy my house,started several business's etc,nothing is impossible as long as you believe you can do it. all the best.sadie

I was diagnosed with epilepsy at the age of 13 but I believe I was having seizures well before this age. I am now 30. During this time I have been diagnosed with many different types of epilepsy, including not having epilepsy. I had a seizure recently where i felt an aura before hand. Infact 4 years ago I mentioned this strange rapid blinking in my eye to my neurologist, who dismissed it as tiredness. I have been getting these small seizures approximately 3-6 times a day for over four years, despite taking Epilim and Keppra. It does anger me that it has been misdiagnosed. I have a new specialist now and he believes it to be frontal lobe seizures.

I completely understand how you guys feel. My family irritate me the most. They don't realise the upset it can cause, then get annoyed with me, then I stress out and they get annoyed further. I guess this is just sheer ignorance, but despite my asking them to learn about it, they don't.

Even now when I have discovered that I am having regualr seizures a day, they fob it off as 'just a phase' after 17 years of the diagnosis I can't see its just a phase.

Employment causes stresses for me also. I have been sacked from two jobs and a colleague has been sacked from my current job for sticking up for my rights in the work place, so I suspect they will attempt to get rid of me also.

I think on the upside, people with epilepsy are alot stronger minded than people give us credit for, alot more determined, and alot more prepared. I think we are unique in a good way and very brave people.

chins up
x

HI I am Joni Bertelle

I was born with Epilepsy and i am a twin .Out of both of us I am the youngest but not in the house hold. I am number three out of four.after my sister and I just turned one years old I and a seizure and I had a full grandma seizure and life stat Jon Caveyky had me in the ambulance for a half hour and the other one told him to discontinue after an hour working in me i came back and we went to Latrobe Hospital and the i was taken bye a helicopter to children s hospital and they had me on oxygen. Then I cam around and my mom and dad where happy to see me alive. On my moms birthday a year later I had another one . Back to children s and they had me on seven or eight pills that never been tested on people only animals.know later I am in sixth grade Getting closer to the end of the year. On a Monday Gym class at the end of the day I told him I needed to sit down I did not feel right. He said you will be alright. My vision went blurry and I blacked out. When I came around The Principle was there. They picked me up and over to the nurses office called my parents and then the ambulance my dad was mad he went into the principle's office and mad I could here him in the nurses office.went to the hospital it was a seizure.She can go back to school on Friday. Went back to school that Friday sharpening pencils my job my vision went blurry and I blacked out again. When I came around there was my teacher Mr.Smith and the Principle was there again. None of my class mates where nowhere to be seen all out in the hall. They picked me up and down two or three flits of stairs and to the nurses office called my parent and then 911 this time.Went to the hospital I did have a seizure. The Doctor came in and said she has to be home schooled.Many many years later still no wheelchair and I am know had taken my self off of my medicine and in 11th grade nothing summer vacation ding ding ding came home from work at a farm I had on in my sleep. Then one in November Doctors put me back on my medicine . The beginning of March of 2009 Had another and now in stage two . On March 24th of 2009 I told my mom it will not me long before i am a wheelchair . And I give up fighting the epilepsy. I am going to be 20 years old on August 11th . And she is upset she wants me to keep on fighting it I cant my legs are stiffing up all of my joint are popping out of place . I have all of the animals I ask for all but one and that is a horse. Should I give up or stay fighting the epilepsy? Please help
Bye Joni L Bertelle

Oh my god, I feel like your talking for me! Can you please e-mail me? It would be wonderful to speak to someone who knows what I'm going through.

I'm 25yrs old, on Lamotogine, have constant headaches, loose the use of my limbs (like a drunk person!) after an attack and find it extreamely hard to deal with stress - even though I now have the life I've always wanted. I'm also engaged, and I'm getting married in August!

The difference is that even though I'm being treated for epelepsi (since they started when I was 13yrs old), my neurologist and the many other doctor's I've seen still can't find the reason for my blackouts.

I know what you're going through. I have been where you are now soooo many times - where I wanted to end my life (I actually did try when I was younger!).

Hope to hear from you soon xx

hi emma,
i have just read your story and it made me so sad. Firstly, whoever tells you that there are a lot more people worse off than you, tell them where to go! because what is happeniong is happening to YOU!! you are not other people you are you and more importantly it is you that matters the most. secondly i am so sorry about your rabbit. if i could give you a cuddle i would. sometimes it is so very hard to carry on, get on with it, get over it blah blah blah whatever else everyone says who thinks they are helping. you are a woman, you WILL keep going, because it is who we are and how we were made. believe me i know!! the reason i am so sick now is that i have spent the last week looking afetr my 20 month old twin boys and husband who all have the flu, all the while feeling bad myself but unlike my husband not having the luxury of spending 3 days in bed, just the task of running around tending to all of their needs.do i sound a little bitter? feeling as i do right now i am a little but we get over that as well. i have jst been told i have a chest infection and pnuemonia. i was waiting at the doctors, crying quietly to myself because i felt so sick, then a man who was severely mentally and physically disabled came in and it made me wipe my tears and "carry on" as they say.
i was diagnosed with Temporal Lobe Epilepsy when i was 19. i probably had it lurking there in the grey matter since i was a little kid. i found it Extremely hred to understand and deal with. you see when i have a fit, i get very VERY violent. to an onlooker it looks like i am having the tantrum of the century, but inside me it is like there is a volcano going balistic. i have never hurt anyone, but i have broken bones in my hand from hitting walls. there is so much angst and energy inside me that if i dont let it out i believe that i will explode.
i lost most of my friends in the early stages because of what was happening to me. not even my family understood it. my brother has grand mal epilepsy and that is what they are aware of not this different type that they have never heard of before. i had to go to the city archive and library to research about this thing i was told that i would have for the rest of my life. i was prescibed carbamazapime that in the beginning made me feel like i was stoned and not in a good way. it slowed my brain activity down that much that it felt like i had a lobotomy. i am 37 now and still taking the carb and very rarely do i feel an aura let alone a fit coming on. it does get better honey beleive me. but dont just "get on with " etc, talk to someone, cry, scream, DO WHAT MAKES YOU FEEL BETTER. i am here to talk privately if you like. you dont know me so i will not judge you, but i would like to help. hang in there emma and i feel for you x :o) x

hi chantelle,
Im alan,I don't have epilipsy but my wife dose very badly and yes she gets so down some days that she thinks if she was to leave she would'nt be such a burden to me and our son.
you see I am my wifes fulltime carer and belevie me some days are alot worse than others , its worse for her at the moment because she has'nt long been told she has epilepsy. only 6 months ago and only definate 3 weeks ago.
I really don't now what is worse having epilepsy or watching a loved one go through it and can't do anything to help , its bloody horrid, makes me cry sometimes.
but there is hope love, understanding and plenty of patients from the people who love you and are around you makes all the differents, just make sure your not trying to deal with this on your own , it's much easier with help

hope this helps

p.s you have to try and smile

I am 30 years old and have been coping with epilepsy for 13 years. I am now on the "proper" Lamotrigine of GlaxoSmithKline Lamictal. After having a succession of GPs and Neurologists who didn't understand what I was going through and dismissed most of what I said, after a period of anxiety they finally referred me to an Epilepsy Nurse Specialist. She has been the best thing that has happened to me since this started.

My issue now is intermittent anxiety caused by winding myself up in certain situations. I had a fit last in May 2006 although I was on Lamotrigine, but I had experienced some food poisoning at the time. At this time, I was on a different type of Lamotrigine as GlaxoSmithKline's sole patent had run out, and the Pharmacy I used gave me a cheaper version of the drug from a different company. When I told my Nurse what had happened she was very angry as similar things had happened to her other patients who had also been switched unknowingly to this other brand and she had found out that the levels of active ingredients in the drugs were not the same as the GlaxoSmithKline brand. I would recommend to any of you who have found that your Lamotrigine is not working to check your brand because I have always found that the GSK Lamictal has worked well for me.

As I mentioned, I have not had a fit for almost three years but I still find that I can upset myself into feeling that I might have one. I stopped going to yoga a few years ago because our teacher was changed, the new one was very new age and wanted us to meditate for 15 minutes. I seriously thought I was going to faint and that this was going to cause a fit. I tried to go to a new class last night with a different teacher. I did enjoy it and he was very good but I found myself shaking a little and getting clammy palms, especially when the relaxation was going on at the end of the class. I love yoga and I do intend to try going again but I get very angry at myself because I know that my feelings of anxiety are irrational.

I have taken transatlantic holidays with long delays and overnight travel over the last few years, and nothing untoward has occurred so again this tells me that my reactions are irrational and that my medication works well for me. I do know that my triggers are fatigue and stress so winding myself up does no good.

I feel that my husband doesn't understand because he is the type of person that can't cope with anyone being ill. My parents are good, but they sometimes smother me. My friends have never had anything like this so they can't offer much valuable support aside from letting me vent sometimes. I can feel very much isolated. The only person I know who has any understanding of what I go through is my father-in-law who has had epilepsy for almost 30 years following a brain hemorrhage. His epilepsy has been controlled for decades, though, and I'm not sure that he could appreciate my feelings of anxiety in quite the same way, but he has talked to me before and tried to make me feel better when I had the last fit in 2006.

This disorder is sometimes very lonely, when you feel that nobody around you understands, and I thank my lucky stars that at least I can see my Nurse every few months. I hate feeling sorry for myself and being illogical, but it can be a vicious cycle.

Does anybody have any mechanisms that they use to deal with anxiety, aside from deep breathing, which is always recommended but for me can actually make it worse?!

Hi after reading your story i had to write to you as my husband as been suffering blackouts for the last 5 years i had to give up work to look after him and my children as i worked not him.He was having these blackouts every day at first some days 3 times a day he's had every test going some twice and only thing they have found is a small brain abnormallty but they did'nt think it was epilepsy,the doctor reckened it was stress,because he was getting them mainly when stressed he never fitted but is one arm twitched, he use to be out for hours if he was on is own.Its got to the point he won't do anything to scared and for a few months he'll be all happy to live with and then he gets really depressed again and bang he'll have another blackout.Our doctor thinks its epilepsy but the nuro doc really does'nt listen to us when we explain to him whats happening they do seem further apart now as like i said he does'nt do nothing so he can't have them but he can't live like this for ever i'm pretty sure after reading some of these stories that he has it because the symptoms are the same he blacks out some time he knows some thing is going to happen but not always is one arm shakes and after i've got him round he does'nt remember anything feels sick for a couple of days with a bad head ache am i right in thinking it is epilepsy and push our doctor into seeing him again.

I think i can relate to this most, so far to ones i have read.
Get him tested, because i used to call mine blackouts, or daydreams, until i had a test, and found out i have absent sezuires, which is a form of epilepsy.
I used to have about 5 a day, it was really bad as a child, and i never got tested for about 3 years, because people thought i was doing it for attention, until i fell down my school stairs, was the time we knew it wasen't normal. I am now 16 years old, and i still have it.
Please make sure, that if anyone you know have it, make sure they take their medication, because before, i wouldn't take it properly, which caused to have a proper fit on the floor.
it made me very ill for weeks, and i was pretty much a wreck.

It really upsets me, because i cannot do the things in which i love to do, or always dreamt of doing for my 17 or 18 birthday.

I'm still a teenager you know, and i want to have fun. I shouldn't be around strobe lights of course, but i'm into rock music, i want to go to gigs, so i do, but i make sure im careful and wear black glasses.
it just really upsets me, im so low about it.

So, if you know anyone who may have it, if they are low and depressive, its not their fault.
people without it, will never understand what it puts people through, but it must be awful knowing someone you love have it too.

Its just such a weight on my shoulder.
I dont need this right now, it stops me from the things i love, and that hurts me the most.

This band manager, who i care for very much, is saying to me to be positive and that there is a chance for it to grow out. But, ive been told im on medication for the rest of my life. so whats the point for positivity? I'm finally out of denial.

Make sure, they take their medication.
I will always wonder what it is like to drive......

I am 39 and I have grand Mal status epilepsy. Was diagnosed 5 years ago, but am certain I've been suffering since my childhood. First it was migraines, unable to concentrate and blanking out. This was all through my teens and gradually became worse through the years. I regularly went to doctors with complaints but they always told me I was suffering from depression. I tried to have a family between the ages of 24 to 32 but miscarried seven times. My body just kept having contractions and no matter how much bed rest I was on, I would lose the baby. I am now seeing that the epilepsy was an underlying cause compounded with the fact that I have a bi-cornuate uterus. I have suffered, greatly. I have felt so alone in my struggle with this illness. Even today, I struggled to pick up groceries and go to the hospital lab to have my Dilantin and Carbamazepine levels checked. I take 400 mg of Dilantin and 600 Carbamazepine ( also 40 Citalopram and 30 Mirtazapine for depression). The constant pain in my head, the confusion, the small, sharp bursts of crying, the uncontrollable head twisting and twitching, arms and legs shaking, my diaphragm muscles being contracted and finally releasing causing me to gasp suddenly for air. This goes on and on for hours at a time. I've had one and a half days good out of the last 7 or 8. I have felt so alone. So utterly... and completely... alone. Then I found this site. I found stories from all of you people here. I understand you. I cry with you. I hear and feel your struggle. I am not alone. I have my faith in God, our Heavenly Father, and I know nothing ever happens by coincidence. I thank God for each and every one of you. I am sorry if I may come across as selfish, but believe me I am only trying to help you feel better today. I am not alone with this illness, and I guess that means that you are not alone with this illness as well. So, my friends, I am a bit better, no...I am much better now. My soul has been rested a while and I feel stronger. I will remember and be grateful for each of you the next time I start to feel like crying and throwing in the towel. You are all my angels. Bless your hearts, and thank you for sharing your stories with me. I love you all.

Dorothy,
from Newfoundland.

Hiya everyone,
Firstly I wish I has found this site earlier because now I know I’m really not alone, My epilepsy started when I was 10 years old, the first medication I was put on worked for 2 years but after that my seizures came back, I tried many medications after that to cure it but none worked and my seizures just got worse. Luckily for me on one appointment at the hospital I had a different consultant that said would I consider brain surgery (but would have to do many tests to see if I was an eligible patient) , at this point I was 17, nearly hitting 18, I didn’t think twice, just said yes. I was moved to a different hospital, which were going to perform all the tests on me and then operate. I 'passed' all the tests so was able to have the operation and had the surgery in December 2008. Since, I have found many shocks, I wasn’t told everything by all the consultants about the operation and the after effects, 7 months down the line I haven’t yet had a seizure, but that is about the only good thing, I’ve had quite a few seizure 'scares', and they made out I would be quite well 3 months after the operation, however I’m still very ill, been to A&E a few times since, I’ve had to leave uni, I also never went back to my part time job since my op so I’ve quit that too, I’m in intense pain every day, I’ve never slept properly since the op, and a few months after the op I started to suffer from severe anxiety and so find it hard to leave the house. They have now told me that it will take more so around a year for a proper recoverment. But i'll have to work on the anxiety, but the worse part is, is that I have lost many friends since the op, and have been quite useless since – unable to do what many 19 year olds can do, so regret it in a way – feels like I’m loosing a year of my life. My family don’t understand and have given up on me, there are many times now when I just feel like I want to just give up. But after reading the stories on here I know I am not alone and I would say to everyone out there never give up, always try and make sure your family and friends understand what you are going through, I always do think in a way…someone out there is worse off then me - I find that does help and to always look to the future. ALWAYS THINK POSITIVE. If anyone has been offered surgery and would like to talk to me I would be happy to tell them all the information I have. On my final note, I’d say and have always thought…the technology today is becoming so advanced that soon epilepsy WILL be something in the PAST.

Natalie 

hello to all,

i have just read all the stories posted and agree they are very sad,i had epilepsy when i was a child but after the age of 7 the seizures stopped although i had one in my mid twenties i thought that was it but earlier this year in february i had a seizure at work and i was taken into hospital where i was advised to see a neurologist which was organised for me i spent the next couple of days weak and confused but then i started to feel a little better.
my family were worried obviously and kept in constant contact as i lived on my own, my girlfriend did not live near me and was very concerned as a friend of hers has epilepsy too so the next weekend she came up to visit because she knew i was alone(i usually had my children with me but could not look after them due to my seizure) she arrived on the saturday morning with her two girls i was very pleased. so she took me out shopping as i could no longer drive, but as we was walking around the supermarket i had a partial seizure she rushed me back home worried i might have another fit. we spent the rest of the day relaxing and thought that was that, however during the night i woke up in absolute agony with my girlfriend staring at me i had just had another seizure.
i was in so much pain i cried for over an hour i did not have any idea where i was or what had happened.
the next day she had to go home i was on my own again in a complete daze not really sure what i was doing.
during the rest of the month i had a few more partial seizures but was seen quite quickly by the neurologist and was put on keppra my dosage was increased gradually and i have not had a seizure since, i feel so lucky i had people around me that cared and helped me.
it is now july i am still having pyhsio for my back and muscle pain but things are getting better.
i think stress was a big factor in this as so far this year i have lost my job, moved areas and getting divorced with added problems with access to my children.
life always has a habit of sorting itself out so always keep your chin up and talk to people about how you feel.

gary age 39

my name is Ginabowie i am 18 years old i hate having epilepsy,i get people thinking im stupid all the time and people saying theirs no such thing as epilepsy

I really feel for Emma and for all of the other people who people who are replied and many if not all who have suffered at the "hands" of this strange condition.

It is odd that more than a few cannot put their finger on exactly when they began to have seizures, as I myself cannot. I had a black-out, as it was then described when I was 15, which was the day after an all-day cricket match in very hot conditions, doctors then said it was some form of heat stroke even though I "blacked out" for a full 20 minutes. My next, "black-out", but confirmed as a Grand-Mal seizure was 3.5 years later, and this was more or less 40 years ago (shortly 58 yrs old).

At first I was given various medications by my GP (note no Specialist brought in yet) even though I quite a prominent semi-pro sports man, the net effect of nearly all of the drugs which were then used was to dull everything down. It was only when I met people that I hadn't seen for a year or two who always asked questions like "where has the sparkle in your life gone?" and said comments like "you're are like a permanently quarter charged battery!!!" Eventually the penny dropped and fortunately I moved house, changed GP and he then set about castigating my previous GP and then after the usual months of trial and error - the mixture of Epilim and Tegratol worked (strange as I am now told that this mixture is)... It did take many months, and there were times when I did feel like a test tube dog, but I knew that I had to beat it, and then success for many many years....... but.

I had never previously experienced any Auras, so these were new to me, and I had no idea what they were. By this I also had been seizure free for a long time. Even when the auras developed into a mild seizure, I was fully aware of what was happening around me, but totally lost the ability to communicate - couldn't say a word for between 2 or 3 upto 30 mins (usually the the former). Couldn't read or write, but perfectly understood every word and action going on around me. It was ever so frustrating as everybody other than my family treated me either like crystal glass or an invalid, whereas my family hardly took any notice which is exactly what I needed at that stage.

I have been very fortunate to have had a very successful business career and retired early, but the irony is that when all of my pressure of works subsides, my epilepsy returned and is now so much worse than it has ever been (I though the reverse happened). No major seizures, but in the last 6 months many throughout the night (for the time ever), and also lots of minor seizures (petit mals) in the daytime. On a very bad day I can have 6 or 7 petit mals, most unnoticed apart from myself, on an average day maybe 1, and then I can have 2 or 3 weeks without any. So at the moment things aren't too good.
Nevertheless, watch the 10.00 o'clock news most nights. There's always somebody worse off than us, it just doesn't appear that way on a bad day... And yes do latch on to the specialist Epilepsy Nurses at whichever health authority you have because they are a fountain of knowledge.....

I had my first seizure completely out of the blue when I was 41. Over the next 6 months I had 3 full-blown seizures until my medication settled. I'm now on 200mg of Lamotrigine twice a day and apart from the occasional 'absence' I have been pretty good. Surrendering my driving licence for 12 months was a real downer and I felt like a second-class citizen.

Anyhow, all has been well for the last 7 years until last Saturday night when I had a massive seizure without any warning. My family dialled the emergency services and the paramedics took almost an hour to bring me round before taking me to hospital.

I am writing this three days later and I am feeling absolutely devastated, as I thought seizures were a thing of the past for me.

I work in a business which has really struggled due to the recession and my wages have been cut by 30%. Consequently, I have been planning on working for myself for some time and have gone a long way towards launching my business. I have customers in place and I was 100% confident of it being a success. However, my new business involves a lot of travel and it has all gone up in smoke now I will have to surrender my driving licence again. I was due to travel to Dorset from my home in Milton Keynes next week. That's not going to happen now. I know it isn't anyone's fault, but I feel very, very bitter.

I am generally a very positive person, but this is a real kick in the teeth. I can't stay with the job I have (as it isn't paying enough to cover my bills) and my own business can't get off the ground if I can't drive. Who wants to employ a 50 year old epileptic. The answer is... nobody!

Well, where to begin really. On the 5th of October i had a type of blackout and i went to th doctors that day and he said that it could be epilepsy, so the tests were started. EEG, MRI end ECG. Mind this was before my 17th birthday so i was obviously upset aswel as worried because my boyfriend of 3 years had a parent that suffers frm epilepsy. so yesterday i went for my resuts and everything was normal, i dont have epilepsy but i have something similar but they dont know what it is or what causes it.
I hope that your all ok though and that there will be an answer for my ''blackouts'' one day.
Fern x

I don't really know where to begin. To cut a long story short my husband is 37 years old and has been ill for the last 22 months, symptoms: vomitting, diahorrea, cold sweats and severe exhaustion, most days hes so sick he can't even make it out of bed. He has been in hospital for 9 months in total over this 22 month period with every test under the sun and nothing major being diagnosed then on August 9th ' 09 he collapsed in the garden and was taking to hospital only to be discharged and told to rest with no explanation. He then collapsed again 7 weeks later and we were told he could have Epilepsy ( which we knew nothing about) and put on Lamotrogine, 7 days later another seizure and 16 days later another seizure and every time his fits lasted between 4 and 5 mins, he was hospitalised again and given an EEG which picked up that he has a weakness in the left side of his brain so it was diagnosed hes suffering from Tonic Clonic Seizures which are the most awful things to witness. So we have taken things day by day and we got to ten weeks seizure free and then yesterday he took another seizure which was the worst of all resulting in him having 2 fits one after the other. We have an 11 year old son and he has been there every time his dad fits and as i sit here writing this my husband is sleeping as hes hardly been able to stay awake since his fit. As a family we are falling apart you see my husband is an HGV lorry driver or i should say he was, he has lost the job he loved for 14 years and can't drive our car either, I can't drive so we r having to rely on his elderly parents. Ive had to give up my job to care for him and we are hardly receiving any benefits which is a major strain as family are payng our bills and mortgage, he's been refused DLA which we r appealing against but apart from everything else the man I have loved since i was 14 years old has gone, he's a shadow of his former self, confidence has gone, he feels a failure that he can't provide for us anymore and blames himself for having Epilepsy, he constantly talks about ending his life as he can't accept Epilepsy. I can't accept it either and I don't know the effect this is having on our son, hes turning into an angry little boy. The life we have shared for 21 years has now been destroyed through Epilepsy. Everything is so raw right now and I don't know if we can make it through this as a family. We have had no support from GP and are still waiting to have an appointment with The Epilepsy Nurse 5 months down the line. My one wish would be to have our life back to normal but it will never be.

Hi my names Jo. I'm 22 and I have temporal lobe epilepsy. I was 17 when I was diagnosed with epilepsy. Which was the worst possible time as I was about to start my A levels and at the time was taking driving lessons. I was just about to take my theory test when I started having my first seizures. It was a difficult time. I was trying to pass my A levels, cope with the constant seizures and had to try loads of drugs before we found one that worked enough that I stopped collapsing all the time. Also had to deal with my family reactions. My father didn't believe me at first until he saw me have a seizure. My Grandma went to pieces and thought I was going to die. I also had to notify my sixth form and explain my condition to all the lecturers. At first I felt like I had to worry about everyone elses reactions before my own. There was also lots of tests and the wait to find out if my epilepsy was caused by a tumour was nerve wrecking. Luckily it wasn't but even to this day I have no idea why I have epilepsy. I'm the first person in my family to have it and I've had no major injuries to my head. Just came from nowhere and basically ruined my life. I was quite bitter about it for a long time because it now means im restricted on things I can do and for ages I didn't feel safe been on my own anywhere. It did make me very depressed but my friends and family got me through it and to be honest I have a friend whose little sister has full blown grand mal seizures and i've never once heard her complain about it. She is quite an inspiration. So everytime I start feeling down and sorry for myself. I think of her and the many other people who are suffering more then me. I've now decided I won't let it beat me. I'm not going to let it dictate what I do with my life. It's just one of lifes many challenges. When I first got it. I didn't think I would be able to move away and go to University. I didn't think I'd even get into a Uni because my A level grades weren't great because amount of time I had to take off. But after a year of trying new drugs and doseages they found carbamezpine controlled most of seizures. I then decided to apply for University and got accepted. I'm now currently a 3rd year and doing well at University.

Gosh reading these has reminded me of how I've felt in the past. I started having fits when I was 21 and I'm 55 now. The worst things at first were getting the drug/dose sorted out and that took ages. It then took another age for me to realise that stress was a trigger so eventually I had to make some major life changes. Of course that leads to feelings of depression and that you can't cope with things but in the end I decided to do my best and stop doing what I couldn't do. I changed my job completely to something that's less stressful and in my current job no-one even knows I'm epileptic. I use lots of tricks to help my memory which I know is bad and I have to cope with the side-effects of Epilim, in particular a tremor which is quite bad some days. I think the main thing that helped me earlier on was being referred to a v good doc (now retired!) who sorted out my meds so if your doc isn't sympathetic/helpful get referred somewhere else if you can. I've been free of fits now for years but actually the fear of epilepsy never goes away. However, it is possible to lead a normal life and even pretend you're as well as anyone else. That's what I find I can do most of the time. Then, though, sometimes you have to remind your family you're not as fit as the fiddle they think you are so don't overdo it! After some years of not driving I was able to get my licence back so these things are possible in the longer term. At the beginning of the illness it's all v depressing but things do get sorted out as time passes if you make the right adjustments...

Good luck everybody x

You people who have 1or 2 fit a year: 1or2 may seem terrible to you but -come on - do they really matter. Many of us couldn't afford a car even if we were given one, to ride a pedal 'bike is dangerous and with arthritus no. Start having 1or2 tonic-clonic seizures a day and look after a house, garden and family. No time for holidays,or takeing it easy, except anytime at church and Holy Days. Every day I thank God I am no worse and I thank God that my husband is blind so that the seizures don't frighten as much and he looks after me so v.well.

hello i have been reading through this site because my 19 year old daughter started to have seizures.The past few weeks they have been more frequent and have been getting worse.I try to be supportive but like many of you she feels frustrated and the doctors have no answers and until she is diagnosed wont give her any medication only sleeping tablets. She works in a old peoples home and has collapsed there, in just a matter of months she has changed so much, tired all the time,whereas before always active and sporty.Her main love in life is football and has been told not to play. Yesterday she had a seizure at my parents but could remember nothing and did not want to goto hospital, after she appeared confused,couldn t walk properly as if she had been drinking but obviously she hadn t.I took her to the doctors 2day and it was a total waste of time,a locum marked her as seen when she hadn t been then after an hour of waiting we were seen. He had no results from any tests could tell her nothing and was totally unhelpful. She did not want to go in any case, and came home crying and angry. After reading more about epilepsy and reading these comments i now realise how many other people go through the process of being diagno sed or not and how it turns your life upside down.Some people they never find a cause for so i wonder how long it will be before they help her.3 months may not seem long but to us its an eternity especially as they getting worse.I dont know where to turn