Epilepsy: trials, tribulations & triumphs

LegacyUser

I think it would be helpful if we had a thread for people to talk about their experiences of having epilepsy or about family and friends they care for who have it. I know that when I went through my darkest days there was nothing like an internet forum available to let me know that I was not alone.

Feel free to share your stories, hopes, fears, trials, consolations and advice with others here.

LegacyUser

My story.

I was diagnosed with epilepsy at seven years of age following an accident. I had collapsed and fallen unconscious one morning while looking for my schoolbag, an ambulance was called and I was brought to the Richmond hospital in Dublin. About ten days later they released me with a diagnosis of epilepsy. My initial fascination with all the attention quickly dissipated when I was given a list of foods I was no longer allowed to have, drinks I was no longer allowed to drink and, of course, a bike which I was no longer allowed to use. I was more hurt that I couldn't eat/drink/do these things when everybody else could than anything else: I didn't want to be different. From that time on I was the different kid in school, the kid who had twelve attacks per day, slept through most of school and then, most fatally for my future, disrupted the class as I felt so behind. I rebelled against everything from that early age, and I comforted myself by eating junk food.

Fast forward ten years and I was firmly behind every kid in the class, and was merely appearing in school everyday. I held out no hope of ever catching up with them. This was long before "resource teachers" and SNAs (Special Needs Assistants) made an appearance in Irish classrooms. That extra help would have saved me and changed all the fundamentals of my life. At any rate, I sat the Leaving Cert and got, I think, an honour and a pass. That was it. Seventeen years of age with nothing. The seizures continued although their pattern changed over the years. No longer was I falling to the ground but the damage to my education had been well and truly done.

After school I went into a succession of jobs; retail work and bar work mainly. At 21 years of age and on 1500mg of medication per day my seizures persisted unabated. And I lost that succession of jobs. It was after one employer let me go that I couldn't take it anymore. He was really, really nice about it. That mattered. He found out where I lived, drove out and spoke with my mother and was there when I arrived home. I had an attack at work earlier that day and all the glasses on my tray collapsed so I had to tell them then that I had epilepsy (usually I had a warning and could go somewhere private to have my attack). His kindness made my situation all the more poignant. At that point I had long since stopped visiting my consultant and lived in a state of underlying hopelessness. After that incident, and at the insistence of my despairing then girlfriend, I went back to my consultant with a very, very clear agenda: I wanted to be considered for brain surgery.

My surgery

For the first time ever, I told the consultant I couldn't take it anymore. I had never been so serious. I did not want to live a life of this standard anymore. He booked me into the Blackrock Clinic (I was a public patient) for an MRI the following week. I was astonished at the speed he moved at on that day; prior to that I just went for the standard EEG so this was the first development in my fifteen years of having epilepsy. I felt I could fight and win this. After that, and with the attacks continuing, I went to the consultant more often and instead of waiting outside the door for the usual 1.5 - 2 hours I knocked on it when an attack was coming on so that he could see me having an attack and understand better what I was going through. I was alive with hope and resolute with determination. In one of those meetings he told me that I had temporal lobe epilepsy on my right side and that he and the neurosurgeon believed it could be operated on successfully as it was localised scar tissue. I couldn't believe it. A few months later I was in Beaumont where they withdrew my medication, hooked me up to a machine and video recorded me for a night or two to see what I was like when I had seizures. I subsequently attended a series of meetings with a clinical psychologist who assessed various parts of my intelligence and, finally, a psychiatrist specialising in epilepsy was brought in from Britain to assess if I was mentally fit to be operated on.
The following year I underwent brain surgery on my right temporal lobe. Prior to the surgery I had been told that I had a 70% chance of the surgery being successful and I did it because I arrived at the belief that having a better standard of life was more important to me than continuing with the life I had. That may sound melodramatic to the outsider: it wasn't. It was raw despair and hopelessness shaped by experience.
Five days after surgery later I walked out the door and in the subsequent weeks the strangest, most unexpected feeling of all happened; rather than delight or even relief, I was afraid. Before the surgery I had hope that I could be cured. In the weeks following it, it really dawned on me that if it didn't work I had nothing: all my cards had been played. Never before or since have I felt that fear and loneliness. It had been totally unexpected and nothing had been said to me about post operative care. The latter amounted to a single visit to my surgeon some months after and a repeat of those tests with the clinical psychologist. ‘Clinical’ being the operative word. Aside from that the neurosurgery team were superb. Words couldn’t do justice to them.
A few weeks after the surgery I had an ‘aura’, that usually nice feeling that signals an attack (and which, oddly perhaps, I missed). I rang the consultant, who suggested I take more medication. And that was it. I have never had an attack since the day of my surgery. I sat my Leaving Cert four months after my surgery and did all honours papers, passing them all (getting the honour in three). I never thought my life could change so dramatically. I wanted to go to university but didn’t have enough points for my course. However, somebody told me about an Access program where people with serious illness can apply and get into university. I applied that way and got accepted. That allowed me to change my life beyond the wildest dreams of the kid who was behind everybody in school, finally leaving university with a doctorate to my name.

tbh

thanks for posting. Much respect.

Giggles1982

Wow many congratulations, I hope you continue to have many years of seizure-free-ness ahead of you ! Thank you for starting the thread, I had been looking back through pages & pages of threads and found nothing on Epilepsy .
My own story is very different I guess, diagnosed around 13 years old, grand mal seizures , a few fractures along the way as a result , CT & MRI are clear so surgery not indicated but a significant abnormailty on my EEG .
Currently I'm doing very well thankfully . (almost) 8 years free , On 600mg 0f Epilim Chrono, and have told I'll be on meds for life. As i'm female I will eventually have to change off the Epilim to something else if I want to have a child. Epilim has been linked to neuro/spinal defects and is not recommended during pregnancy . Then again the doctors dont seem to be sure which ones are ?
Epilepsy has not had a huge affect on my life , although during my many OPD appointments in Beaumont seeing different doctors ( I have never met my ACTUAL consultant in person ) my parents were told I couldnt bathe alone, lock doors, etc . Another genius doctor announced they werent seizures at all but panic attacks , and sent me home with a referral to an Adolescent Psychiatrist .....
Nowadays my biggest problem with my condition is how it affects my career , I can never work in my preferred field , no matter how well controlled and seizure free i remain, but this is a small complaint in the grand scheme of things.

Can i ask specifically of epileptic woman, how pregnancy went with meds etc ? And also is anybody attending a good consultant ? Even privately ?
Cheers.

LegacyUser

I had a grand mal seizure when I was 18, and stressed over exams. I didn't know what it was at the time and the doctor put it down to over-working.

Following that every now and then, particularly when tired, I had (what I know now) petit mals where I'd get that "aura" and temporarily lose control of my limbs - limbs would jerk and I'd drop what I was holding (as well as feeling like I blacked out for a second). I again put this down to being tired and/or not eating right.

Two more grand mal incidents happened on holidays. The first time my friends called an ambulance (not knowing what it was) and I put it down to heat/drink (which was merely a trigger). The next time I was on holiday in Rome and one moment I'm feeling a bit funny and the next I'm waking up in hospital without a clue where I am. I was told afterwards that I had been slurring my words prior to my attack and then in a highly-agitated stage afterwards. I had been repeating things over and over, forgetting them instantly. I don't recall any of that and it scared the hell out of me. Despite all that, when I saw a doctor when I got back, he put it (again) down to tiredness / heat.

Finally, after a near grand mal, I made the appropriate appointments. The doctor I went to this time immediately spotted the symptoms. I was referred to a private consultant (expensive!) who, upon hearing my story, recommended me for an EEG. He fully believed, before the results came, that I had developed adult on-set epilepsy. He was right.

Since early this year I've been on Lamictal. I haven't suffered any attack but then again my attacks were very intermittent before. I don't believe it had a big effect on my life before and I haven't drastically altered my life style now. I'm more cautious with alcohol, avoid strobing lights and try and get my sleep but it's not a major life changer. In some ways it's good to have an answer to the attacks before. It's not severe (my dosage is low) and it's not held me back in any way in my life. Sure insurance premiums will rise for me but, as something that qualifies as a long-term illness, I don't really find it too debilitating.

KiLLeR CoUCh

I started noticing something was not quite right with me when I was 14. Whenever I was around strobe lighting or any sort of flickering pattern I started to feel very odd and detatched. I knew nothing about epilespy at the time and thought nothing of these episodes till I collapsed at a concert two years later. I took myself to the doctor who referred me to a neurologist in Beaumont for two years time (not out of choice =P as a non emergency case I was put to the very end of the public waiting list), that appointment was put back twice by the hospital and in the end I never went. I was busy with exams at that stage and by and large I'd been fine since.

When I started college I collapsed again in a nightclub, and again at a concert. The last time friends told me I was twitching. I was checked over by paramedics and allowed to go on my way but I decided to actually do something about it this time. I took myself back to my doctor and got a referral to a consultant. I went privately this time and was seen within three weeks of contacting my doctor. It's cost my a fortune but it was worth it. Three appointmens, one EEG and one MRI later I was diagnosed with epilepsy, suffering from probable complex partial seizues and was sent home with a prescription for Keppra.

Things have been up and down since I started meds. I'm still learning how to balance having a life and looking after myself. No more driving, nightclubs, concerts or gigs, all of which I adored. Oddly enough since starting meds my photosensitivity has all but dissapeared, now my biggest trigger is not getting enough sleep, so on the bright side of everything, I'll always have an excuse to sleep as long as I want.

Giggles1982

Killer couch - would u be able to pm me with your private consultants details please ?
I'm not going back to beaumont public , its crazy .
Thanks !

orlanemo

I was in a car accident when I was 19. Within the month I remember sitting on the couch in my Mam’s house. I was trying to read a line from the Sunday newspaper. Three times I tried to read the same line and just couldn’t understand it. Then I collapsed onto the couch and lay there staring out the window for probably 30s. When I came to, I struggled to get up feeling light-headed. This marked the start of my experiences of epilepsy, though obviously I didn’t realise what it was at the time.

Over the course of the next few years, there were different incidents. Sleep could become a problem at times. Sometimes I used to wake up with a start feeling really strange. As I would nod off I would often feel this weird feeling – like I was being sucked back into myself. There were incidents that others saw where I my eyes would flick back in my head and they could only see the whites of eyes.

None of this really became a big issue for me until I started college at 20. That summer I had been diagnosed with Crohn’s Disease so I suppose I had more pertinent health issues on my mind. While in class one day I was trying to take down notes and like the first experience, tried to write one line three times, I let a shout, threw down the pen, curled over into a ball and began shaking. The lecturer got everyone out of the room and I was okay after a few minutes. Went home to the doctor who told me I had a “temperature fit”.

From that Christmas onwards I had begun to suffer very badly with headaches. My GP began to treat me for migraine. So not only did I have really bad headaches but I also had a dry mouth and walked around like a zombie. I had really bad dizziness, and would get head-rushes and black-out moments where I would be fully conscious but everything around me went black. I remember at 21 looking for eye-creams that would tackle dark-circles. I had stopped attending classes at this stage. I went into see my Department head and one of my lecturers spotted me waiting. He was shocked by how much I had deteriorated and organised my deferrals for me.

I kept going back to the GP and he finally organised an EEG in Tallaght. At last I felt like I was getting somewhere. They did it in March and it came back as abnormal but not epilepsy specific. Then I received my outpatient’s letter. It had April 1st as the date but it was already past that date. I rang my mam distraught. “Mam – I’ve missed my appointment” and as I said the words out loud I realised that the date was for next year – nearly one year from that date. I just didn’t know how I could go on like this. By now my day involved lying on the couch because any form of movement caused me to collapse. In order to get up I would have to do so by degrees, easing myself up slowly or else I would black-out. The headaches were so severe that the slightest noise would grate on me. On several occasions I can remember screaming myself to sleep. Even now I have difficulty thinking about this time.

The date of April 1st seemed like a sick joke. But this highlighted my ignorance of how few neurologists there were here in Ireland. I sat in for the long wait. My mam at this point couldn’t take it and went over to my GP and begged him to get the date brought forward. I got in for July. I spent a few minutes with a SHO and she diagnosed epilepsy straight away. I began on Tegretol and the change was amazing. Gradually it was increased until I was at therapeutic levels and gradually the worst of the epilepsy began to subside. Unfortunately the stress of the previous six months had caused the Crohn’s to get a lot worse.

With the addition of the meds my quality of life returned to an acceptable level. However from then on the nature of my seizures changed. I now developed grand mal type seizures, all the time with almost full consciousness. They were usually triggered by tiredness. Never did any serious damage but my speech would be affected for about a week after. Other people’s ignorance of what to do if someone is having a seizure is bloody scary. Imagine being conscious but fitting and hearing people debating about whether to stick a spoon down your mouth! Or having a bunch of guys holding you down. That happened once, and wow, was I in pain for long time after that.

So then after 8 or so years of seizures, no driving, always taking my meds and being careful about sleep – the epilepsy disappeared! Its gone! I’m now seizure free for over 2 years and medication free for over a year and a half. Don’t ask me how this could have happened or why me. I have been warned that I may develop it again later in life. I still avoid strobe lighting and niteclubs in general. I still maintain really good sleep habits. I never drink to excess.

I don’t know if this is an unusual experience. I had expected to be in for the long haul with epilepsy meds (as I am with the Crohn’s meds). I’m sure if I did an EEG again it would still be abnormal. But I don’t get any aura, I sleep fine, not one headache. I do live with the fear it will return but so far so good.

KiLLeR CoUCh

Ah Orlanemo, you give me hope! I'd love to able to be med free one day

Novella

I have a quick question.

Any epilepsy sufferers take Tegretol Retard??

LegacyUser

Reading all your stories here, thought I'd give you mine too!

I had my first seizure, full on grand mal seizure at the age of 12. Luckily enough it was in front of my family and my sister who's a nurse recognised it as an epileptic seizure. I was taken away in an ambulance(apparently-I remember nothing!), but I wasn't kept in hospital as my mum insisted they didn't. I got an appointment shortly after with a consultant Dr. Webb in Crumlin Childrens Hospital. Meanwhile I'd had quite a few seizures,approximately once a week. Anyone with epilepsy will know that once you have a seizure you may as well be sleep walking through life for 2 days after a seizure - You remember nothing! I was diagnosed with epilepsy and was put on various medications throughout the years, none of which seemed to stablise me - Lamictal, Tegretol, Topamax, Epilim, you name it, I tried it. I had countless EEG's, none of which ever showed up anything. This was throughout my teenage years which you can imagine was fairly rough. Lack of sleep and stress triggered my seizures and I could go nowhere on my own plus had to be in bed by half 10! I moved consultant when I turned 18 to Dr. Tubridy in St. Vincents, he decided first port of call was an MRI seen as I'd never been given one. As usual this showed up nothing. He put me on Keppra but at this stage I was beyond hope, I thought the seizures would never end.

However, here I am 5 years seizure free at 24. I have my full driving licence and live a totally normal life. To top it all off, I've been drug free for 2 months now! And so far, so good. I'm absolutely THRILLED!! There is hope for people out there, never give up!

orlanemo

Hey Novella,
I was on Tegretol. There was talk of putting me on Retard because I was having periods where the Tegretol was not working throughout the day. It was thought that the slow-release effect would cut down on my absences. From what i understand though Retard is higher in carbamazapine than Tegretol. I was within therapeutic levels on the dose i was on so it was decided to space out my Tegretol regular throughout the day.

Are you on it? And if so how are you getting on?

orlanemo

KiLLeR CoUCh wrote: »

Ah Orlanemo, you give me hope! I'd love to able to be med free one day

Hey KC,
I remember one of the many doctors I saw at the public outpatients clinic talking to me a little while after I was diagnosed. He said that for some people it does go away - it gave me hope but tbh i never really believed it.

Its depressing being on meds for life but thank god we have them. Every time I've had a seizure I have had difficulty speaking and even now friends laugh at my memory loss (good natured laughter). But i hate to think how bad I'd be by now if I didn't have the meds.

Do you have any side-effects with yours?

LegacyUser

I was told that there's generally two types of epilepsy - one you get during childhood and it often disappears in adulthood. My own - onset adulthood - means that I'm less likely to ever get rid of it (although my neurologist did suggest I could eventually be weaned off the medication).

Actually we're "lucky" in that our medication is free (for now). That's a big help. One thing that bugged me was that I found out the standard VHI package doesn't cover EEGs. It covers baby aerobics (or some such) but not an EEG? They're very expensive! As are the neurologists themselves.

How has everybody else here adjusted their lifestyle? I've made sure that, if I'm out with friends, I go home to get enough sleep even though it's very tempting to just stay on drinking with them.
Do people cut back on their drink?

I'm guessing the big one is tiredness - do you sleep more these days? I haven't adjusted my weekly pattern (6 hours or so on a weeknight, more at weekends) but it seems to work for me unless something interrupts my sleep pattern (warmth, noise outside, just difficulty sleeping). I find myself nervous at times if I haven't gotten sleep.

Also: have you told everyone? My friends and family know, but only one person at work does.

Novella

orlanemo wrote: »

Hey Novella,
I was on Tegretol. There was talk of putting me on Retard because I was having periods where the Tegretol was not working throughout the day. It was thought that the slow-release effect would cut down on my absences. From what i understand though Retard is higher in carbamazapine than Tegretol. I was within therapeutic levels on the dose i was on so it was decided to space out my Tegretol regular throughout the day.

Are you on it? And if so how are you getting on?

My dad is on it actually and he has been finding lately that his vision is blurry and night driving is more difficult. However, he went for an eye exam and they found his vision to be perfect.
I was just doing some research and found that a possible side effect of his medication is blurry vision and was wondering if anyone else had experienced the same!?

He has been on it for quite a while now though and is doing pretty well. Since diagnosis, he has had at least one seizure a year but he has been some time seizure free now

KiLLeR CoUCh

orlanemo wrote: »

Hey KC,
Do you have any side-effects with yours?

Ah side-effects, don't get me started. When I picked up my meds I made the mistake of reading the list-as-long-as-my-arm of very common and common side effects of Keppra. I wish I didn't because I think some of what I think are side effects are just psycosomatic, I'm a bit of a worrier :rolleyes:

Tiredness and lack of concentration are the big ones. I've just gone up a dose and I'm falling asleep anywhere and everywhere. Thankfully these are time dependant and dissappear after about a month after starting the new dose... I'm counting the days

LegacyUser

Drugfreeeeee!!;
Your story is similar to my little bros. Its coming up to 6 years since he had his first seizure. His first happened on Christmas Eve, we will always remember that Christmas! We had our Christmas tree up until March 3rd and he came out of hospital around 10th March where we finally had out Christmas turkey! He was in Crumlin hospital from Christmas day until March as he was having lots and lots of severe seizures, at the start it was up to 50/60 a day. He was 11 at the time, big into sports and youngest of a family of six so was tough as nails. I see drugfree mentioned Dr Webb in Crumlin, that name rings a bell as he did some consultant work, but the bro is under Prof MacManiman in Crumlin, this is due to change shortly as he is coming to the age of 18 and I’m not sure what hospital he is changing too.
So how has it affected the family, well my sister was doing her leaving cert the year this happened and it definitely made her pick nursing! My father never returned to work after Christmas and took early retirement to look after him on a constant basis. It is really tough on him the most as we live in the country, all of the children are living in the cities for work etc so it’s mostly just mam/dad and the bro at home. I’m not sure what drugs his on at the minute, the father has been keeping a strict record of all his seizures and medication aver the past 6 years and has quite an impressive record kept. He has got a VNS fitted, we are unsure if its working as we haven’t seen much benefit to it, so on the last visit to the consultant he told us to turn it off over some weekend were all there and see what he's like without it, so we will try that soon. At the minute he is down to about 15/16 seizures a month from about a year ago where it was in the 30/40's. He can’t feel a seizure coming on but there are times when we can know by how he is reacting that there may be one shortly. One of the toughest things is the fact that he's after missing out on his childhood and especially the sports he loved so much. ive in a big hurling area so he can’t play on the team, yet he wants so much to play or be part of the team. Last year he was part of the U16 hurling panel but even that was difficult as they were preparing for a match he could get a seizure at the warm up or one incident he was brining in water during the game and he had a seizure on the field. Holding play up. We don’t mind, the players don’t mind, the small community we live in don’t mind but I've noticed recently that his confidence is shattered and doesn’t want to go to as many matches or public activities as he used to. We feel that excitement brings on some of his seizures, it’s a pity all good things cause excitement! He was in mainstream school up to last year where he struggled through his junior cert and went to a more suitable school this years and seems to be a new guy in that regard. he has had 2 MRI scans and nothing showed up and the latest were looking to get done is a 3d brain scan. I suppose this is to look into the possibility of getting surgery if possible in a few years, we feel its very unfair on him to struggle through the way he is now. But the thing is he’s not complaining, in fact he’s gone very quiet within himself but you can see he’s determined to fight on and there are times when he has a seizure, (would be asleep for about 10/15 min) and he’s try jump up and continue on what he was doing and it must take some strength to do that. I suppose there has been a big improvement since his time in Crumlin to now, but the parent being close to the action don’t see it that way at times. It’s so long and drawn out to see an improvement or big changes which is the toughest on the parents. Thanks to the OP for starting this as it does give hope that one day he will be able to live his life and do things he always wanted to. I’d say the happiest day will be the day he will be allowed and able to tog out and play in a hurling match, I know that would be his All-Ireland no matter what it would be.

joa00001

Does anyone take epilium and frisium? I take both but still have seizures although I am awake throughout them? Also does anyone know of a medicine I can ask my doctor about that works immediately. I usually can tell the day I am going to have one as I feel "off"!

emzolita

yeah i took tegratol, i was allergic to it though, cause my epilepsy was Refractry, it just gave me a rash, and rapid weight loss.

emzolita

joa00001 wrote: »

Does anyone take epilium and frisium? I take both but still have seizures although I am awake throughout them? Also does anyone know of a medicine I can ask my doctor about that works immediately. I usually can tell the day I am going to have one as I feel "off"!

i was allergic to epillum too, but only took frisium, on top of my tablets if i had more than 4 seizures in a day.
i took complex partial seizures, so i dunno if its the same with Grand mal, but on the day u feel "off" you might be able to take a tablet form of Diazepam, (what they usually give you in the hosp to prevent seizures)
i dunno, but it might be worth asking, hope you get somewhere.
emma

joa00001

thanks Emzolita, I am going to my doctor this week and I'll ask him about it. I feel so close to being seizure free if I can just take control of my medication when I feel I need it!
Joanne

emzolita

joa00001 wrote: »

thanks Emzolita, I am going to my doctor this week and I'll ask him about it. I feel so close to being seizure free if I can just take control of my medication when I feel I need it!
Joanne

Joanne, sorry i told you Diazepam was the drug they put me on if i had a few seizures in the one day. but it was Ativan, I told you the wrong drug. sorry!
It knocks you out for a couple of hours, but you more than likely wont have a seizure that day!

maupat

Hi,

Just thought I’d add my story to the list.

I had a grand mal seizure at the age of 26. In town that day I told my friend I’d sit down for a while and she (sensing something wasn’t right) went to buy me a bottle of water. Next thing I knew I was lying on the ground gazing up into a crowd of onlookers – I was unable to communicate. The words were all jumbled in my mind and I could not speak - what came out was slurred. I’ve been told I was salivating at the side of the mouth too. I was taken by ambulance to the Mater ER. Fell in and out of sleep for most of day after that, felt washed out and wasn’t too bothered about eating. (I should add here that a year previous to this I had a strange episode where I couldn’t read the words on my screen at work, I felt naueous and was unable to articulate my thoughts. I left work early that day). After an EEG 2-3 days later I was diagnosed with epilepsy. Lamictal was prescribed and I returned home (I live in the West of Ireland). The following two years were something of a rollercoaster.

- understandably and as is normal protocol I was not allowed to drive for a year. I also gave up alcohol.

- I felt constantly tired and sapped of any energy. A typical day for me would be forcing myself to get up at 9.30 a.m. (this was a major effort – my mind wanted so much to be healthy but my body just wasn’t willing) and tried to eat some porridge. As I felt so exhausted and lacked any energy whatsoever I would retreat to bed at 11.00 and would probably sleep again for a while. I would get up during the afternoon (again forcing myself) and would try to walk 100 metres from my house. I would become so exhausted after this that I would have to sit down for while. During the afternoon an overwhelming sense of tiredness would wash over me.

- my appetite was non-existant – something which really worried me as I am not very heavy at the best of times and did not want to lose any more weight. Despite my best efforts and intentions I would feel extremely nauseous when trying to eat any proper food. I lived on (quite literally) 7up and sweets for a long time. I would just like to reiterate here that I knew these were no good for me and only provided temporary energy bursts but, as I said, I couldn’t stomach anything else.

- during this time also I had headaches everyday.

- another symptom I had was aching feet every morning upon waking (I’d be v. interested to hear if anybody else has had a similar experience?).

- dizziness and lightheaded – if I had to go into town (typically for my meds) I always hoped I wouldn’t be standing too long as I would feel dizzy and weak and felt like my legs would go from under me quite literally. I remember asking whoever was driving me at the time to park as close to the chemist as possible. Indeed I remember having to return to the car one day desperately needing to sit down and try and focus so I wouldn’t have an “episode”. I would frequently have episodes where I would have to rush to my bed to lie down as a blackness would overcome me and it took all in my power to keep myself from the brink of losing consciousness. Frightening times.

- loss of memory and concentration – I found myself forgetting things (again a worrying symptom for me as, prior to this, I would’ve prided myslef on having a good memory) and found that I wasn’t reading as much as I would often read the same line 3 or 4 times and not be able to take it in even then.

Needless to say my work life suffered during this time too. About 2 mths (approx) after the seizure full time but this didn’t work. Thankfully I had a v understanding boss and I did half days – 9.00 – 1.00 Mon to Fri although this required extreme effort. I often felt very hot and dizzy and would have to go outside in order to try and recover from the dizziness. I did not have the energy to walk down town – again only a 70 metre stroll away.

In Oct/Nov my medication was changed to Keppra. Over the next year the above symptoms remained the same until I had another major episode in Sept with severe headaches, nausea, loss of appetite, pallor I felt like I was on the verge of blacking out. My legs were completely aching. I returned to my GP (not for the first time over the previous year and a half) and he prescibed Sanomigran for my headaches.

The good news is that they worked after a month or so ;-) My headaches were less and less frequent. Over the next six mths my energy began to return. Gradually over time I began to reduce my dosage of Keppra. I should add that my decision to reduce Keppra was a personal decision and not one I made lightly. As any epilepsy sufferer will know and will have been warned by their Consultant and GP you always run the risk of having another seizure while changing from one drug to the other (you have to gradually go one the new drug while weaning yourself off the old).

I was able to return to work for 4 full days every week. Gradually my appetite began to return too! (something I was delighted about). I was still off alcohol and I still made sure to maintain good sleeping patterns esp. in advance of having something extra on the day after. Gradually I was able to walk further than 100 metres.

At the moment (two and a half years later) I am on 250mg of Keppra per day and 1.5 mg Sanomigran per day. Given that my headaches dissipated greatly since going on Sanomigran it has been suggested that I may have Migra-lepsy. Again as any visitor to a neuralogist will know they are reluctant to give a definite diagnosis.

At the moment I am glad to say that I have got my life back and appreciate things much more. I still have to make sure I get enough sleep, eat regularly and try not to miss meals if at all possible, keep alcohol intake to a manageable level, rest when my body tells me (even though my mind may say otherwise!). If I do not take these steps it is ultimately myslef who will suffer in the end bu becoming compltely depleted and wil then have to rest for longer. Routine is v important. I find, that when I have my period I am more tired and I would be a lot more forgetful and would not be able to concentrate as much. In order not to exacerbate these symptoms further I would try not to take alcohol around this time.

I have returned to a full-time work pattern. I even go to the swimming pool once a week (if possible) and try and get in a couple of strolls during the week (dependent on how I’m feeling). I try not to get too stressed about things (easier said than done though!) as I know this can also quicken the onset of the above symptoms.

When I look back over the last two and a half years I find it hard to believe that I felt so bad and although it took a while for me to get htings back on track I hope that my story will inspire other people with epilepsy not to give up. Things can get better. Try and take the medical opinions on board but listen to your own body as well. It’s about finding a balance that suits you personally. Don’t give up! Hope this helps.

cassid

My little man was diagnosed at 2 with epilepsy, he had bacterial meningitis when just a few weeks old and infantile meningitis can cause epilepsy in up to 5% of patients. After we got the results of the eeg and mri , I just thought we have been given this horric condition for our son to deal with but I realise now that for now he is one of the lucky ones, his seizures have stopped thanks to his meds, it did take some time for him to adjust and its strange to see a 2 yr old who has no energy to do anything but sleep but we are behind that bit now. He is big 3 now and doing well, a few behavioural issues but he is getting the support he needs for that.

pops

I developed epilepsy as a teenager probably as a result of having had meningitis as a kid. Only recently was I rediagnosed as having juvenile myoclonic epilepsy and was changed to Epilum which was terrible, and then to Keppra which is far better for me.

I am now driving for the first time and although I still have to watch stress levels, tiredness, eating properly etc. my life is so much better.

Great thread by the way.

annieobrien8

For a few years I had suspected I had photsensitive epilepsy but never did anything about it because I thought testing for it could be painful! Couldn't have been more wrong! But anyway... sunlight shining through trees as I drove (well, as I was a passenger) past would cause me to have absences i.e. petit mal seizures. Some absences felt like I'd blacked out for a few seconds, others were just like long blinks. I couldn't hear or see during the absences. I'd also feel the muscles in my limbs, mainly in my arms, relaxing when I opened my eyes again after the absence. I don't think I was ever aware of them tightening in the first place so I must have lost awareness by that time. Over the years that I had the untreated epilepsy I'd say I had hundreds of absences, but when I was too young to drive the only bad thing about them was that it was a bit scary.

I've tried to trace it back and I'd say I might have been about 14 when I started getting the absences, although I do remember that a flash in a Mortal Kombat game 'did something funny to my head' when I was younger so I probably had it earlier.

Life continued as normal with the absences until I was 18. The Saturday before I was due to start my 1st year summer exams in college I collapsed outside a church. I had travelled in in the car with my family. I felt a bit dizzy when I got out of the car and that was the last really that I knew until I came round in the ambulance. Apparently, when I got out of the car I started walking backwards with my head turned back towards a tree. My mother was watching me and thought I was looking up into the tree. Then I fell and started seizing. My brother tried to catch my tongue with his fingers to stop me swallowing it, not a good idea! Later that night I saw the bite marks on his fingers! A doctor happened to be there and he stuck his car keys in my mouth. It seems that I had two grand mal seizures in that one bout because I woke up after one wondering why there were two priests looking down at me laughing! I've been told that after the first seizure I tried to straighten up and said "I'd better go to mass anyway"! I don't remember saying or hearing anything, just seeing the priests and briefly wondering what was happening. Next I knew I was in an ambulance on the way to the hospital. I remember very little of the night despite the fact that I was answering questions and talking. I do remember when the paramedic was asking me questions I was thinking why won't she let me sleep!

That was a Saturday and I was released from hospital on the Tuesday. I was put on 50mg of Lamictal originally but that really didn't do much. I'm now on 400mg a day. I've never had a grand mal seizure other than that Saturday but until I hit the high doses of Lamictal I was still getting absences. I requested the last dosage increase in hopes that I could get seizure free and be cleared for driving. And, fingers crossed, it has worked. I would warn though that while the higher dose has pretty much stopped the absences triggered by photosensitivity I have felt more twitchy ever since starting on it. I suppose that's the trade off though!

In terms of lifestyle, I'm lucky enough that I hadn't developed a taste for alcohol and clubbing so epilepsy isn't affecting my life too much! That said, I was never actually advised to stay away from alcohol, I just don't like it! Photosensitivity is very annoying though. Things that others don't even notice make me leave places e.g. a flickering bulb. There is a surprising amount of flickering lights out there! I take sunglasses everywhere with me as they can help a bit. Asides from the obvious of clubs, there's the cinema, the flashing lights on emergency vehicles, some cars indicators but that depends on how fast they flash, camera flashes...

I never tried to keep my epilepsy a secret. Given where the big seizures happened the news probably would have spread anyway but it's far safer for friends, family and work colleagues to know what I have in case I ever have a seizure in their presence. I also wear an Epi Alert bracelet.

Sleep is definitely massively important. I stayed out one night last March til about 5 am and I really did think I was going to have a seizure before I got home. Thankfully, though I didn't!

My nuerosurgeon is Dr Michael Henessy in Galway. I have never had a problem with him. He organised an EEG when I requested it (cost about €150) and increased my Lamictal when I asked for it.

I can't think of any more to say, except I wish nightclubs would stop using strobe lights! They're pointless!

Overall, I am quite lucky. Yes, I have epilepsy, but it's well managed as long as I'm not reckless.

Hope what I've written makes sense but it's so long I haven't read over it!

annieobrien8

Also, does anyone else get lots of static shocks?? I get them from people, animals, walls, coat stands, water, clothes...!

Giggles1982

annieobrien8 wrote: »

Also, does anyone else get lots of static shocks?? I get them from people, animals, walls, coat stands, water, clothes...!

Haha yes ! Suffer terrible with them !

annieobrien8

I wonder if it's an epilepsy thing?! Although, my mother does get them a lot too! But if my epilepsy is in any way genetic it's probably from her side of the family!

This may make me sound crazy, my first consultant thought so anyway... but did anyone else have some hairs on their head that were like they had been singed?? In about the first two months after I had the grand mal seizures I found such hairs and I never used a hair dryer or straighteners on my hair at the time! My consultant's suggestion was that I prayed too close to the candles!

andreab

Great thread guys!

My "episodes" began when I was 11. I was getting a fillng and had a seizure in the dentists chair. Although they didn't think it was a seizure they said it was an allergic reaction to the local anesthetic. (so from that day any filling I needed was done in hospital under general) Next one I had was 9 months after that, I had cut my finger and ended up on the floor with a group looking down on me. They put that one down to the sight of bolood. BTW I have no fear of blood, I love medical shows and such.

Another one a year after that this time I was at school walking along a corridor. I had a few like this over the next few years. Then in my leaving cert year a week before the mocks I had another seizure, my dad collected me from school and I went home to sleep it off. I always ened up in bed for 2-3 days after each turn, couldn't do anything but sleep. That afternoon at home I had another seizure so my dad brought me to casualty where I had another seizure in front of a doctor. He told my parents he thought it looked like epilepsy but my consultant thought differently. The next day on rounds in the ward he told me that I was a moody teenage girl and that "fainting" was normal. I cried for about an hour after he left. I knew it wasn't normal, I went to an all girls school with 800 pupils. It wasn't just fainting when I lost consciousness completely, I always wet myself, bit my lip/tongue and my whole body would either go completely limp or stiff.

On my parents orders he sent me for an EEG, it did show up abnormalities but he said they did not warrent any medication.

So I continued on. Until last August. I had been out with friends and got up the next morning. Made a cup of tea and told my friend I wanted to sit down cause I didn't feel well. I didn't make it to the couch. Instead I collapsed to the floor and cracked my head on tiles in the procerss. I woke up in a complete daze couldn't understand what had happened. This was the wrost one. It took me ages to come around and realise what happened. My brother and my friend managed to clean me up a bit and then brought me to ER. where they made me wait to be seen. I had another seizure in the waiting room so they seen me striaght away then. 5 stitches and 2 days in hospital later they had ruled out my heart (my mam had just had a heart attack so they thought I could have had an underlying heart condition) but it was normal so they discharged me and told me to come back as an outpatient. A week later I went to my GP to get my stitches out and also to get a sick cert as I was still getting dizzy spells whcih they said was from the concussion. She said enough was enough and there and then rang a private nuerologist in the heritage clinic in Lucan. Dr Murray. Got to see him within a month and 6 weeks after that, after an MRI and EEG he diagnosed me with generalised epilepsy. He also looked at my older EEG and said my consultant was wrong not to put me on tablets when I was 13.

In November I started on Lacmictal and so far so good. Had a few bad weeks where I was a bit depressed and had nausea that would not go away and also slept like a baby - 8 hours at night weren't enough, But these days I'm great, I'm a bit pissed off at no drining but I go back to see my consultant on Aug 10th where he said he will sign me off if I haven't had a seizure, so fingers crossed

Was a bit worried about telling my work at first and then I was interviewing for a new job so I was confused as to what to do. But I said nothing and after I got the new job I told my manager and he didn't care in the least.

I have to say looking at your stories above I feel lucky that mine isn't as severe as others. At 24 now I am just concerned about what happens next I don't mind taking my tablets but would love some advice on pregnancy and children not for now but as my consultant told me I have to be aware and plan ahead as much as I can.

Anybody have any advice in this?

sporina

Hi there,

My mate has epilepsy and is also an Alcoholic.. I was hanging out with him at the weekend and he had a seizure - I do not know a lot about it but he had symptoms before the actual seizure - he could not hear me and I think he was grinding his teeth and just staring into space. During the seizure he bit his tongue - he also shouted before he started shaking.. the seizure lasted about 2 minutes. He is ok now but I am worried now as I know he should not be drinking when he is on his meds... i cannot remember the name of them sorry.. something like Epiisum?? Anyway he only has Epilepsy for the past 6 years and is having attacks now about every 6 months or the past 3 years... Is the fact that he drinks on his meds really making him worse? Thanks in advance...

maupat

sporina wrote: »

Hi there,

Is the fact that he drinks on his meds really making him worse? ...

Chances are all the alcohol combined with the meds he is taking are making him more prone to seizures.

andreab

It seems people have differrent triggers but one of mine is def alcohol. So he could be the same. My doctor has recommended I don't drink.

twiglet

Could someone PM me with the details of where to get an EEG done privately ? My dad is on the waiting list for Beaumont and i dont have any confidence in him being seem this year.

sporina

thanks for the replies.. yeah I assume he should not drink as it probably has a counter effect on this meds.. i guess he knows this himself though... not sure if I can persuade this otherwise..

azezil

I first started taking seizures last year, almost a year after I had a brain tumor removed.

I started off on 1000mg of Keppra last April (09) but wasn't really that bothered to take it as I only had seizures while asleep and tbh I didn't want to give up drinking. May 4th 09, I had my first waking seizure at work (great fun flapping around on the floor and peeing yourself in front of colleagues >_<) and was rushed to Connolly Hospital in Blanch.

I only have brief images from that day, I recall the onset of the seizure, the loss of control, blank, waking up with someone from security and the occupational health nurse saying an ambulance was on the way, blank, hospital, lots more blanks...

Just being in that hospital was an ordeal in itself. They put me in an isolated room because they didn't know what was wrong with me, nurses would only see me wearing facemasks! Eventually when my family arrived they explained that I was on anti-seizure medication, they brought it from home and after a week of taking my meds regularly I was released.

The following night while at a friend's place I had another seizure, I was more lucid this time but still couldn't control my body. Arms going ridged, neck forcefully snapping to the right. I insisted he bring me home and I just take a pill, I was about due to take one anyway so figured that's what had brought it on.

Got home, took my Keppra, my mate had just left and within about 5mins I started having another seizure, I tried to call him but my speech was slurred. He came running back and called an ambulance.

Back to Connolly feckin hospital! >_<
They had no Keppra, and ran all manner of tests on my heart... I was left in A&E taking multiple seizures for 3 days. During my brief periods of lucidness I pleaded with them to just send me to Beaumont, but they refused. On the 4th day they finally got in contact with my doc's over at Beaumont and increased my dosage of Keppra up to 2000mg. They also insisted on me seeing a consultant at the hospital about my heart. I saw him and he couldn't understand why those MORONS had reffered me to see him. He looked at the results of all the tests and saw nothing wrong. He explained that heart conditions can sometimes bring on seizures but that Keppra has no effect on those types of conditions and appologised for wasting my time.

Released again and all was seemed to be fine. I had a couple of mild to moderate episodes but they were only after a sleepless night or if I'd had even a small amount of alcohol. I had to give up alcohol completely. Which I have to admit I really hate, my social life completely died since

It took me almost a month to get used to the Keppra. I had lots of mood swings, very short tempered, constantly feeling tired and yet couldn't sleep. That past in time.

About 3 / 4 months ago I noticed I was having infrequent minor episodes which passed quickly enough. Usually proceeded by blurred vision, a feeling of pressure building in my brain, intense pain then back to normal. Those minor episodes became more frequent as time went on, starting at about once per month, to once or twice a week, to daily.

I had my first appointment with the epilepsy clinic last month (March), I went through my case history (seriously, why can't these people just share one freakin file, I've gone through it with 3 or 4 different departments now!?!) and told them about my recent minor episodes. They increased my dosage to 2500mg of Keppra. For a week I felt incredible, healthier than I'd felt in years. But alas the headaches are starting to come back now.

Next appointment is with my neuro surgeon in June, I'll mention it to him then. The whole thing just pisses me off, but my lack of understanding is probably the worst part, I'm having to figure most of this stuff out on my own, it's incredibly frustrating.

sineadgy

I developed epilepsy when i was 14 coming back from the airport i had a seizure in the back of the car big shock to my parents, next thing i remember is waking up in naas hospital.
A week later after all the tests mri/cat/eegs i was diagnosed with myclonic/photosensitive epilepsy. Firstly i was put on Tegretol which didnt agree with me at all then went Lacmictal which didnt agree with me either finally i was put on epilim which so far so good seizure free for nearly 8 years.

Joey the lips

This thread is interesting. However I would caution the description of medicine... Everyone with epilipsey might not realise that medicines that work on one dont work on another. Some medicines as we all know make the child very dopey as they are quite strong...

Anyway our story...

We had a child he was a very difficult delivery. They type that should apear in the horrific delivery thread on the womens forum. 2 weeks after he was born he gave these real intense stairs and stiffioned. His mother did not like it. It happened again a day later. She brought him to the community nurse and she told us to go to our doctor. He did not like it so sent us to the hospital. The hospital did not believe us. Reckoned it was "infentile spasims" It happened again so we brought our child in and refused to remove from the hospital knowing it would happen again in about 4 hours. It did.

They were happy they were fits. we were happy they noticed. For the next few weeks there was test after test and results inconclusive. To this day our childs brain shows no activity or scareing but he is still having these attracks.

Anyway 4 combinations of medicine over a couple of years were tried until the latest one was a success. He is doing well now but every six months we have to administer a stetsolid if he has a bathch of fits which he tends to get.

The hardest thing to do as a parent is to see your child going through this. Our child has severe intellectual disability (mentally handicapped) so it makes it harder for him to understand what is happening.

From reading books and stories people going through this handle it quite well. As the op shows very well.. However the general public dont. As a parent it hurts me to see my family fearful of looking after my child. This is not a disease they will not catch it. In most cases the child comes around themselves and has a long sleep.

I am thankful of my childs doctor. He is brian Lynch in temple street. In fact I think temple street is the most amazing hospital ever.

sam34

Joey the lips wrote: »

From reading books and stories people going through this handle it quite well. As the op shows very well.. However the general public dont. As a parent it hurts me to see my family fearful of looking after my child. This is not a disease they will not catch it. In most cases the child comes around themselves and has a long sleep.

hi joey, i just had to pick up on this point

obviously i dont know, as i havent spoken to your family, but from my own experience i'd imagine people are reluctant to mind your child because they are fearful that they wont know what to do/will do the wrong thing if your child had a seizure, and might thus end up creating a worse outcome for your child than if you had been minding him. i doubt they are fearful they will "catch" seizures from him.

LegacyUser

sam34 wrote: »

i'd imagine people are reluctant to mind your child because they are fearful that they wont know what to do/will do the wrong thing if your child had a seizure, and might thus end up creating a worse outcome for your child.

This is probably true, but it is indefensible for anybody, never mind an adult, to be so utterly ignorant about epilepsy. I can empathise heart and soul with Joey the Lips's comment that 'it hurts me to see my family fearful of looking after my child.' I have heard an educated person tell me, unaware of my own history, about a child with epilepsy in her class and how she was "afraid" that the child might have an attack and wanted to have him moved to another one just in case something happened. Needless to say I've never looked at that person the same. I have had many similar conversations through the years with people who don't know my own background.

And as a kid I was often on the receiving end of that ignorance. One event sticks in my mind as if it happened yesterday. I was 12 years old and I was supposed to be going into Dublin with a friend. However, he rang me the day before saying he couldn't go. I found out later, from a very reliable source, that his father refused to allow him go to Dublin with me in case I had an attack and then he would be unable to find his way home. 12 years of age and I knew for a fact that age brought neither wisdom nor enlightenment. Such bigotry, such primitive, backward ignorant fearful little minds. Trying to make a child feel like a pariah, to exclude a child who was doing everything in his power to live a "normal" life. I wanted neither sympathy nor fear. I just wanted the personal dignity and the privacy which this far too public illness denied me. Dignity. Privacy. Silence. Normality.

I agree with you that the above fear and ignorance of a large number of people in this society probably does not derive from malice or badness on their part - but the ignorance is deeply, deeply hurtful, ineffably so.

LegacyUser

Joey the lips wrote: »

This thread is interesting. However I would caution the description of medicine... Everyone with epilipsey might not realise that medicines that work on one dont work on another. Some medicines as we all know make the child very dopey as they are quite strong...

Anyway our story...

We had a child he was a very difficult delivery. They type that should apear in the horrific delivery thread on the womens forum. 2 weeks after he was born he gave these real intense stairs and stiffioned. His mother did not like it. It happened again a day later. She brought him to the community nurse and she told us to go to our doctor. He did not like it so sent us to the hospital. The hospital did not believe us. Reckoned it was "infentile spasims" It happened again so we brought our child in and refused to remove from the hospital knowing it would happen again in about 4 hours. It did.

They were happy they were fits. we were happy they noticed. For the next few weeks there was test after test and results inconclusive. To this day our childs brain shows no activity or scareing but he is still having these attracks.

Anyway 4 combinations of medicine over a couple of years were tried until the latest one was a success. He is doing well now but every six months we have to administer a stetsolid if he has a bathch of fits which he tends to get.

The hardest thing to do as a parent is to see your child going through this. Our child has severe intellectual disability (mentally handicapped) so it makes it harder for him to understand what is happening.

From reading books and stories people going through this handle it quite well. As the op shows very well.. However the general public dont. As a parent it hurts me to see my family fearful of looking after my child. This is not a disease they will not catch it. In most cases the child comes around themselves and has a long sleep.

I am thankful of my childs doctor. He is brian Lynch in temple street. In fact I think temple street is the most amazing hospital ever.

My heart goes out to you, Joey. I remember reading my Dad's old business diaries when I was a child. At the start of every page during the really bad times he had written 'pray for Soirbhíoch'. I was never aware of that side to my Dad and it was a great feeling to come across that.

It took years for the medical people to tell me the precise form of epilepsy which I had. I had right temporal lobe epilepsy. This is the same type of epilepsy which the Russian writer Dostoevsky had. His diaries have been published and in them he talks in detail about how he felt prior to an attack, in the 'aura' period. I could have written it myself. It was absolutely amazing to find somebody else who knew this feeling, the ecstasy or as I described it to my consultant when I was a young child: "it feels like I'm in heaven".

Ultimately they could operate on me because the source of my seizures was localised (in the right temporal lobe), because all the combinations of medicine had failed to control my seizures, because the seizures were having a substantial negative impact on my life; because I was young (22 when I finally underwent it); because I was willing to take the risk of surgery.

There's a lot more information available on the different types of epilepsy now so if you know the precise type of epilepsy you might be able to understand somewhat better, or at least enhance your perspective and awareness of possible solutions. But privacy, personal dignity and normality were what I wanted above all else. I detested the stigma and I think it's cool that you refuse to accept your son being treated like that.

Joey the lips

sam34 wrote: »

hi joey, i just had to pick up on this point

obviously i dont know, as i havent spoken to your family, but from my own experience i'd imagine people are reluctant to mind your child because they are fearful that they wont know what to do/will do the wrong thing if your child had a seizure, and might thus end up creating a worse outcome for your child than if you had been minding him. i doubt they are fearful they will "catch" seizures from him.

It has been explained to them and they have been present when they see what we do.... We actually do nothing. Just keep him safe from objects around and check he is breathing afterwords...

Not really difficult.

LegacyUser

Had to go anonymous for this one

Bit of a bump but it's 2:00 in the morning and I'm fairly freaked out right now. Tomorrow, I'm due to be admitted for an operation to remove brain matter to treat epilepsy and I've started to get anxious today.

I've spoken to consultants and my surgeon and everyone seems to be confident the procedure will go OK and will do what it says on the tin but I can't shake the doubt. I have good practice in focusing myself on the positive but no matter how hard I try I can't shake the negatives about this. I'm in no doubt of the scope of this procedure, both personally and in the "grander" scheme of things, but as mentioned, I can't stop thinking of what may go wrong.

Thanks to all the boardsies I've PM'd over the last few weeks who have gone through or are close to others who have gone through similar procedures. If anything, it's given me an insider's view of what risks are involved that I couldn't truly get from a surgeon or specialist.

So this is 12 years of my life in a nutshell. Pure hell. "Managing" the illness has been next to impossible no matter what I tried. It has lead me through bouts of alcoholism and drug abuse, both of which I have overcome, thank god i.e. They're now things I don't really need to cope anymore

I guess what I'm trying to say is that the challenges I've met over the years were always things I knew I could eventually control but this procedure tomorrow proves something I've not encountered before and can only pray things go OK. Means the world to me to be honest.

/Vent

Thanks for reading

LegacyUser

Early days yet but I'm post-op and seizure free since although there was an episode afterwards which, although not seizure-like, was scary enough. I was told these things are expected after such surgeries whether it be directly related to an actual seizure or due to trauma caused by the brain surgery itself so no major worries there. The main thing is that I have not had a seizure exactly as I had before the operation and am suffering little in the way of memory loss, cognitive function or speech problems.

I was having seizures at least twice weekly and were, each and every one, the scariest experiences of my life so far - hence the freaker of a post above pre-op

So, I'm optimistic about the future, once again! I have a massive scar on ma heed but hair will grow as I do from now on!

Onwards and upwards and I hope all works out in similar fashion for all posters on this thread. Your stories have been very helpful as have some of the posters I have contacted directly. Thanks to one and all and god bless.

sam34

great to hear things are going well A9

positron

I haven't been checking this thread in a while - and wow, I am trilled to read a success story. Many congratulations for getting thru the procedure A-9-AT-MOST, and I really hope it works out for you.

Dionysus

A-9-AT-MOST wrote: »

Early days yet but I'm post-op and seizure free since although there was an episode afterwards which, although not seizure-like, was scary enough. I was told these things are expected after such surgeries whether it be directly related to an actual seizure or due to trauma caused by the brain surgery itself so no major worries there. The main thing is that I have not had a seizure exactly as I had before the operation and am suffering little in the way of memory loss, cognitive function or speech problems.

I was having seizures at least twice weekly and were, each and every one, the scariest experiences of my life so far - hence the freaker of a post above pre-op

So, I'm optimistic about the future, once again! I have a massive scar on ma heed but hair will grow as I do from now on!

Onwards and upwards and I hope all works out in similar fashion for all posters on this thread. Your stories have been very helpful as have some of the posters I have contacted directly. Thanks to one and all and god bless.

Superb news, A-9-AT-MOST. How have things been since?

Joey the lips

I will be back later in the week to share our story but for the moment I will just read yours and thank you for shareing your thoughts.

emzolita

A-9-AT-MOST wrote: »

Early days yet but I'm post-op and seizure free since although there was an episode afterwards which, although not seizure-like, was scary enough. I was told these things are expected after such surgeries whether it be directly related to an actual seizure or due to trauma caused by the brain surgery itself so no major worries there. The main thing is that I have not had a seizure exactly as I had before the operation and am suffering little in the way of memory loss, cognitive function or speech problems.

I was having seizures at least twice weekly and were, each and every one, the scariest experiences of my life so far - hence the freaker of a post above pre-op

So, I'm optimistic about the future, once again! I have a massive scar on ma heed but hair will grow as I do from now on!

Onwards and upwards and I hope all works out in similar fashion for all posters on this thread. Your stories have been very helpful as have some of the posters I have contacted directly. Thanks to one and all and god bless.

I had that surgery, your hair will grow right over your scar and you cant see it at all. and the bit thats down on your face over your ear goes invisible with healing. hope your doing well, and getting loads of rest.

Emzolita

LegacyUser

Dionysus wrote: »

Superb news, A-9-AT-MOST. How have things been since?

I haven't checked this thread in a while but all is going good. I'm due back in work shortly and have had one absence episode since the surgery 3 months ago. Thankfully it wasn't like the seizures I used to have prior to the operation and really down to my own mismanagement of the illness (i.e. I was quite tired, dehydrated, overly warm, placing unneccessary stress on myself, etc..) which triggered an absence of about 60 - 90 seconds about 6 weeks ago. I'm starting to be much more aware of these triggers than I was prior to the operation and am dealing with them as they arise with no auras since.

Overall I'm very happy with how things are going and I am much more confident in myself. If you offered me my current situation prior to the operation I would have taken your hand off!

Adamantium

Soirbhíoch wrote: »

My story.

I was diagnosed with epilepsy at seven years of age following an accident. I had collapsed and fallen unconscious one morning while looking for my schoolbag, an ambulance was called and I was brought to the Richmond hospital in Dublin. About ten days later they released me with a diagnosis of epilepsy. My initial fascination with all the attention quickly dissipated when I was given a list of foods I was no longer allowed to have, drinks I was no longer allowed to drink and, of course, a bike which I was no longer allowed to use. I was more hurt that I couldn't eat/drink/do these things when everybody else could than anything else: I didn't want to be different. From that time on I was the different kid in school, the kid who had twelve attacks per day, slept through most of school and then, most fatally for my future, disrupted the class as I felt so behind. I rebelled against everything from that early age, and I comforted myself by eating junk food.

Fast forward ten years and I was firmly behind every kid in the class, and was merely appearing in school everyday. I held out no hope of ever catching up with them. This was long before "resource teachers" and SNAs (Special Needs Assistants) made an appearance in Irish classrooms. That extra help would have saved me and changed all the fundamentals of my life. At any rate, I sat the Leaving Cert and got, I think, an honour and a pass. That was it. Seventeen years of age with nothing. The seizures continued although their pattern changed over the years. No longer was I falling to the ground but the damage to my education had been well and truly done.

After school I went into a succession of jobs; retail work and bar work mainly. At 21 years of age and on 1500mg of medication per day my seizures persisted unabated. And I lost that succession of jobs. It was after one employer let me go that I couldn't take it anymore. He was really, really nice about it. That mattered. He found out where I lived, drove out and spoke with my mother and was there when I arrived home. I had an attack at work earlier that day and all the glasses on my tray collapsed so I had to tell them then that I had epilepsy (usually I had a warning and could go somewhere private to have my attack). His kindness made my situation all the more poignant. At that point I had long since stopped visiting my consultant and lived in a state of underlying hopelessness. After that incident, and at the insistence of my despairing then girlfriend, I went back to my consultant with a very, very clear agenda: I wanted to be considered for brain surgery.

My surgery

For the first time ever, I told the consultant I couldn't take it anymore. I had never been so serious. I did not want to live a life of this standard anymore. He booked me into the Blackrock Clinic (I was a public patient) for an MRI the following week. I was astonished at the speed he moved at on that day; prior to that I just went for the standard EEG so this was the first development in my fifteen years of having epilepsy. I felt I could fight and win this. After that, and with the attacks continuing, I went to the consultant more often and instead of waiting outside the door for the usual 1.5 - 2 hours I knocked on it when an attack was coming on so that he could see me having an attack and understand better what I was going through. I was alive with hope and resolute with determination. In one of those meetings he told me that I had temporal lobe epilepsy on my right side and that he and the neurosurgeon believed it could be operated on successfully as it was localised scar tissue. I couldn't believe it. A few months later I was in Beaumont where they withdrew my medication, hooked me up to a machine and video recorded me for a night or two to see what I was like when I had seizures. I subsequently attended a series of meetings with a clinical psychologist who assessed various parts of my intelligence and, finally, a psychiatrist specialising in epilepsy was brought in from Britain to assess if I was mentally fit to be operated on.
The following year I underwent brain surgery on my right temporal lobe. Prior to the surgery I had been told that I had a 70% chance of the surgery being successful and I did it because I arrived at the belief that having a better standard of life was more important to me than continuing with the life I had. That may sound melodramatic to the outsider: it wasn't. It was raw despair and hopelessness shaped by experience.
Five days after surgery later I walked out the door and in the subsequent weeks the strangest, most unexpected feeling of all happened; rather than delight or even relief, I was afraid. Before the surgery I had hope that I could be cured. In the weeks following it, it really dawned on me that if it didn't work I had nothing: all my cards had been played. Never before or since have I felt that fear and loneliness. It had been totally unexpected and nothing had been said to me about post operative care. The latter amounted to a single visit to my surgeon some months after and a repeat of those tests with the clinical psychologist. ‘Clinical’ being the operative word. Aside from that the neurosurgery team were superb. Words couldn’t do justice to them.
A few weeks after the surgery I had an ‘aura’, that usually nice feeling that signals an attack (and which, oddly perhaps, I missed). I rang the consultant, who suggested I take more medication. And that was it. I have never had an attack since the day of my surgery. I sat my Leaving Cert four months after my surgery and did all honours papers, passing them all (getting the honour in three). I never thought my life could change so dramatically. I wanted to go to university but didn’t have enough points for my course. However, somebody told me about an Access program where people with serious illness can apply and get into university. I applied that way and got accepted. That allowed me to change my life beyond the wildest dreams of the kid who was behind everybody in school, finally leaving university with a doctorate to my name.

going through chronic pain of my own and that situation is very similar to mine especially in regards to college education, really inspiring!