Describing seizure types

My daughter experienced what she described as de ja vu and episodes of feeling strange, but couldn't explain what was happening to her. She would have these episodes just before her menstral cycle and could have as many as seven over the space of a couple of days. On one particular occasion she had one of her episodes and actually wet herself. After these episodes she becomes very tired and just sleeps, she also has difficulty remembering things prior to these attacks, which is becoming a problem at school as she forgets work projects she had learned prior to her attack.

Our GP arranged for her to see a consultant to try and diagnose if her symptoms are epilepsy or migraines. The consultant asked us to keep a diary of when these attacks occurred and what happens, whilst MRI scans and eeg tests were carried out. The results came back normal occording to the consultant who telephoned me at home, although failed to provide a follow up appointment.

I have studied the internet for advice on epilepsy and I believe my daughter has Temporal Lobe Epilepsy, but the consultant who dealt with my daughter didn't seem to take my concerns seriously and treated me as if I was being over the top. My daughter continues to have these episodes which is extreemely distressing as I can not do anything to help her, I have been advised to go back to the consultant we originally went to by our GP, but when we last spoke he said that if the tests failed to find anything , then we would have to go down the psycological route! I know my daughter as I live with her every single day, I have a dad that has extreemely violent epileptic fits and I've seen enough of his to know there are certain similarities in the way my daughter behaves during these episodes.

As anything I have written about my daughter's symptoms given you any idea what the problem could be and is it worth going back to my GP and requesting a second opinion with another consultant.

In response to Julie Bartlets last comment, my mother and I experienced a similar situation nearly 10 years ago in Wellington, New Zealand. I was 10 years old and started to experience what my mother thought were seizures-semi conscious convulsive movements, in which I could hear, but not respond, or stop movement. As we had no history or understanding of epilepsy this was very hard to deal with, as I was young and scared, and mum felt helpless. We went to our local GP, who was well respected in the community, but who insisted that mum was being dramatic and I was craving attention. She said that I was too healthy and intelligent to be having seizures. Like you, mum did as much research as possible and went back to her several times, requesting the referral to a specialist. She said, quote "you would be wasting their time, and we would have to wait 3 months anyway." Mum ended up taking matters into her own hands and took me straight to a paediatrician who diagnosed epilepsy and started trying to find an appropriate treatment. My MRI and eeg came back inconclusive like your daughters, but I still received medication, the diagnosis had been made prior. Within 2 months I was seizure free and getting back on track at school.
Our message to you is to trust your instincts. like you said, you know your daughter best of all and if need be, do all you can to see a specialist. If they don't listen, insist, or try somewhere else.

Hi Julie,
I just wanted to say my daughter, now 10 has been having "funny turns" since she was about 1 or 2 yrs old. At first the Drs said it was temperature related, even though her temp; taken by their nurses was 37.7max at the time. They wouldn't do any test. There isn't one to check for epilepsy! They then died down when she was 5yrs old. So after numerous turns over those years just as quickly as it started it stopped. I then calmed down and took on their idea of it all been temperature related.
Now after a futher 4 yr battle with countless nurses, G.P.'s, Peads, and neurologists she has now been diagnosed with "Probable Focal Epilepsy Syndrome".

Let me just clarify a few things though.

1. My mum like your dad has epilepsy.
2. My daughter is very sleepy and sleeps for upto 2hrs after each event.
3. Like most she has no memory of it afterwards.

My daughter's "funny turns" at first would consist of the Tonic Clonic which every Neurologist has agreed on for the past 2 yrs. Then at the age of 5 when we thought they had gone, they hadn't, just taken on a different type. Her turn results in her feeling funny, dizzy, faint, then been unable to move any part of her body except for the odd kick, eventually she would be sick, say within 15mins from the onset. Whilst all this happened, although she would look to be concious, to our dismay she can't remember anything.
She was treated as though she was attention seeking for sometime. It took for her to be admitted into our main hospital(Southampton) for video telemetry and then be discharged at the end of the week with migraine tablets and diagnosed as suffering with migraine, only to be found face down in a field of mud having had one of her turns, less than 6hrs after being discharged. The person who found her was my husband.
On the back of that and a witness statement from my neighbour they gave her the diagnoses of epilepsy in May this year. Luckily they had just got the results back of the video telemetry. All EEG's and MRI scans are normal apparently.They are slow. However on the video test, they found what they needed. To get that test I had to ask for it. I also argued with them and said that i would never accept the migraine diagnoses. It's over to quickly etc, and I googled the type of migraine that they thought it was. They couldn't diagnose that type unless they could rule out Epilepsy, which they couldn't. They then let us have this test.
If this helps and gives you the determination to go on and argue for your daughter then writing this has helped. One thing I have learnt through all this is NEVER give up and ALWAYS ask to see someone else if your not happy with the current Drs, neurologists etc. I have my first appointment with the peads dr who said my daughter was attention seeking, and tried to make me feel like I was neurotic, on the 4th November. I am so looking forward to that for personal reasons!!!! However I must stress, the knock on effect to this is my daughter is now performing at a level more fitting with that of a year2/3 pupil not that of a year 6 pupil.
Take care, keep going......

hi julie
i have a 17 month old daughter whos been having funny turns for the last 2 months shes been admitted to hospital twice due to losing conciousness i really dont think were getting the service we deserve from the doctor me and my partner had an appointment today at the hospital and was told hes going to do a eeg again as it wasnt done properly the first time and an appointment has been booked for an mri late december i was told from the doc today that weve got to wait for all the results to come back before he do anything about it so i know exactly how you feel and i was in two minds wheather to ask for a second opinion and after today i definatly am

thanks caroline

Hi
My daughter began having seizures 23 months ago whilst in hospital having her appendix removed. Due to her being 15yrs she was immediately diagnosed as having psuedo-seizures and attention seeking by the consultant and discharged. She continued to have seizures and we were advised by our GP to keep a daily diary. At this time her periods were all over the place but after a few months by keeping the diary we noticed that the seizures occurred at the same time as her period. She has been admitted to hospital on numerous occassions and various Dr's stated that they believed she had epilepsy, until the same consultant that had labelled her a fake would come round and would then send her home.
She is totally unconscious during a seizure and for a considerable amount of time after. Just prior to a seizure her colour drains from her face and she goes very pale, during the seizure she is incontinent, her whole body jerks, she often foams at the mouth and sometimes vomits during the seizure. She is very confused and disorientated when she comes round and always complains of a bad head, she normally sleeps for hours afterwards. She has been on life support 3 times for 4 and 5 days at a time and whilst very heavily sedated and ventilated her body continued to convulse and they noticed that before the seizure her heart races.
Some nursing staff have been fantastic but others have treated her appaulingly.
She was put on to anti epileptic medication for 3 months and she had her periods and didn't have a single seizure. The same consultant then said she didnt need AED and took her off of them. She now continues to have seizures around her periods.

Hi Julie.
A few weeks before Christmas i was having the same Deja vu feelings. I was scared as i didn't know why but i ignored it.
Christmas day night i had the same feelings but more intense.
Boxing day i actually had a seizure which led to me loosing consciousness. (this has only happened once)
i had partial seizures everyday for the next 4 days, then every few days after that. This is having the same deja vu feelings but my whole sense of smell changes and i feel like i am in a dream like state. I am always with my partner so he speaks to me and makes sure i don't loose consciousness like before. I haven't wet my self like your daughter has which concerns me they didn't take you serious.
We paid private and went to a specialist, i had MRI scan and EEG which came back normal but with my symptoms he diagnosed the epilepsy as partial seizures.
You need to get another appointment if you haven't done so already.
Hope if you haven't already you get this sorted.
Thanks
Kriztianne

Hia,

When I was 7 I was diagnosed with partial seizures, including absences, which a GP had said it was flu for several years. I have just come out of hospital after having my first tonic clonic seizure. I have found mostly all my seizures are caused by stress.

I think it is terrible that some GP's, nurses & specialists are still not realising when someone has had a epileptic seizure of any type. I also think it is bad when a doctor calls a parent/guardian of being over protective over their child, even though they live with their child every day and mostly all day and know when a behavior is not 'normal'.
Annabelle x

hi julie

I've suffered de ja vu symtoms for 10 years, since i was 27, for the 1st 5 years i've had about 1 to 2 a month they last 5-10 seconds and i'm fully aware, with just a headache or nausea afterwards, i didnt even relize i had epilepsy or anthing wrong with me as i just thought it was hormones! Until i was 14 weeks pregnant and had a complex partial fit whilst asleep, so was admited to hospital by my husband...........and that was 5 years ago and since then i just get 1 or 2 De Ja Vu fits a month that don't really worry me as i'm fully aware of it..........i had an MRI which showed nothing, and a sleep EEG at Kings that did show something up 5 years ago..........and am having another sleep EEG soon as i've had one more fit this last week that i do not remember whilst asleep, hormones no dought!
i've been offered AEDs but have never taken anything as never really had the need to control my fits as they are so short and i'm aware of what is going on, but have seen a brilliant consultant this week at my local hospital and am now considering taking Keppra for my fits. It is so hard to understand epilepsy as there are so many diferent seziures u can encounter........and i've never been given any advice, or a name for the fits i have, or recomended treatment or even advice on driving, up until this week with a fab nuerologist at my local hospital, were i go every year for a check up and he is the first one to spend time answering my questions..............

So it is a very very hard condition i think to understand, and did u know taking evening primrose oil , star flower oil and st johns wort can all make the symptoms of epilepsy worse, and they are the most common thing taken for us women with mood swings, PMT etc..............

sarah

I am acounsellor and have been treating a female in her mid forties for "panic attacks" There is no family history of epilepsy, she has been seen by a neurologist -all test have come back clear -has had CT, EEG, ECG. However the symptoms she describes don`t fit easily into a definition of panic attack. I actually witnessed one of her "episodes" in session -she went rigid, did not respond to my questions, her arms went into spasms and her left hand seized up in to, how i can only describe as a claw like position. The episode was transitory -lasting no more than 15 seconds, my client was conscious but not aware of her surroundings, see looked vacant with a mask like expression. On coming "around" she could not recall what had happened. her Gp and neurologist have not witnessed an episode. I am in the process of informing her Gp about this. Can anybody help me with what might be going on here

Hi Nick,

I have just read your letter concerning a patient of yours who seems to be having the same symptons as my 24 year old daughter. Whilst i cannot help at all with your situation i would just like to let you know of our dilema, my daughter started with these 'episodes' last year and after a visit to her GP was referred to a neurologist who then after a lengthy examination decided it was not epilepsy but arranged for an EEG and MRI scan along with numerous blood tests. All these tests were clear and the doctor was quite abrupt in his diangnosis (or non diagnosis of her problem. We then decided to go privately and although she was happier with this doctor he still has not been able to give her any more help other than suggesting further lengthy monitoring ie a stay in hospital or having electrodes placed on her for a week and finally a visit to a counsellor was mentioned. We have not carried out any of the recomendations yet and feel very frustrated and at a loss what to do next, she is still having these episodes but feels reluctant to return to the doctors as they have very dismissive and our own GP actually told her she should be feel happy in the knowledge she did not have epilepsy !

hi Julie
My husband suffers from grand mal seizures and has since he was about 5 years old, his mother, sister had epilepsy as does his son but not grand mal. My husband has no warning usually I know something is about when he begans acting out of character..shortly thereafter he will have a seizure which last anywhere from 2 to 5 minutes... any longer than that I will call the hospital. He twitches.. and moves his arms and legs about, sometimes wildly and has one the odd occasion wet himself... once he wakes he says he doesn't remember these seizures or some things that he did or that happened prior to the seizure, only that he has a "sore" head... sometimes these headaches are almost as bad as the seizures and always he sleeps afterwards. He has injured himself from time to time mostly when I have been unable to reach him before his seizure is full blown and has had to go to the hospital for stitches and once a few days after having a bad seizure just outside our flat and breaking his jaw in three places... another time he was speaking to me and moments later he fell to the floor and hit his head againest our tv table injuring himself and spent a night in the hospital for that and this is a man who hates hospitals, no wonder. In the past year and half his seizures have all but one taken place in bed while he had been sleeping, these seizures wake me and I simply make sure he is on his side, thankfully with these he has not injured himself.
On a last note- after every seizure I play his favorite music.. not too loud but slightly more than medium noise level..and instead of the usual day..two days sleeping he is up and about within a couple of hours or maybe three hours, he is still very tired and has a headache but he is happy that he isn't spending so much time sleeping. This works in almost every instance but there have been the odd seizure that just seems to really take it out of him and he will then sleep the usual day or two.. I'll play the music because I know that deep down he hears and gets the rest he needs at that time. I hope that writing this might help others.. his doctor when I spoke to him about it brushed it aside as it not really making a difference but I am there with him and I KNOW it DOES make a difference and anything that I can do to help him I shall however small. Oh yes, his favorite music? Jim Reeves and Katherine Jenkins, what a combination- country and opera!

Hi Kelly,
I am very sorry to here about the distress that you and your family are going through at the moment. My advice to you is hang on in there, try your best to get the tests done that you feel are necessary. I have previously written on this site about my son Jack who late last year suddenly had a bad seizure completly out of nowhere and then continued having the seizures with no explanation. It was only by chance that the doctor deceided to give him an mri and it was found that he had damage to his brain , which they are now saying could be a stroke that he may have had when he was just a few days old, he is now 11. When i think back over the past years i realise that jack was never quite right but there was nothing substantial that i could go to a doctor with. Please trust your mothers instinct, hopefully the doctors will be right and there won't be anything to worry about, but as i have said before sometimes your mothering instinct knows best and it's good to trust it more than anyone or anything else. Good luck, i hope you get some answers soon.

I have just this week been told I have an unusual form of epilepsy after 40 years of growing up all my life telling my family ' Oh no I'm having one of those funny feelings again! ' No one new what I was talking about or understood, and believe it or not I thought I was all alone in the world! My Mother infact brought me up to think I was in touch with the spirit world! From as early as I can remember I would stop playing and be very still, my Mother would speak to me and I would not answer her for a few minutes and then would say ' I've had a funny feeling mummy ' My Mother took me to the doctor but 40 years ago the doctor did not know what it was. And that is where it stayed, I have grown up with these funny feelings all of my life, never thinking that I had any condition or even encouraged to see a doctor, I have just lived with it as being part of me untill by accident it has now come to light!

I had one of my funny feelings while driving to the doctors for just a repeat prescription 2 weeks ago, I always think now when I feel one arriving ' Oh here we go again... like a wave comming over me and bosh, im in a dream, in this dream type of feeling I see things, not physically but in my head, almost as if I am in a dream, my breathing becomes very heavy and my heart rate becomes very fast, this lasts for probably a few minuites and then I have learnt to my despair what follows is just horrible. I become very nauseous, my head feels like I have the biggest hang over and the bit I hate the most is the feeling of disorientation, nothing feels familar, I know where I am but I dont if that makes sence. This feeling can last up to 4 to 5 hours later I feel very ill and when they are very bad ones I have to go to bed and hope that when I wake up I feel normal again! Over my life I have never analysied them as to when or where, all I know is that they arrive any time, no warning, just arrive.

So when arriving at the doctors I am still feeling this way, my doctor asks am I alright to which I reply ' Oh don't worry I've just had one of these things I have ' my doctor then asks 'What things? ' so I reply ' Don't worry I have had them all my life ' 'Explain what these things are ' As I discribe what happens it accures to me that he knows what I'm talking about! Now at the time I'm feeling quite excited! For the first time in my life someone understands what I'm talking about!!!! I couldn't belive it !

I have been to see a consultant at the hospital this week, It has answered alot of questions for me in the respect that I have struggled with my memory, where as other people at school or at work have picked something up so quick, I have to ask over and over again even though it maybe the same thing I have been shown to do earlier on in the day, It takes me to repeat things over and over again before it will sink in! I have my children asking ' Do you remember when ? And I wont remember. Now I have been discribed medication I am hoping that this will improve! And do you know the best thing ever? Now I have been diognosed with epilepsy and am now on medication the thought that I may not have another one is like a dream to me!!! If you have a child who tells you anything that I have described, please please go to the doctor with them, Its very difficult to descibe when you are very young, so listen very carefully to how they are feeling. And now, as strange as it sounds after all these years its like I am saying good bye to an old friend!
This is my story and I would love to be able to talk to someone who is like me after all these years its like a revelation!!

ALI X

hi , i was wondering if any body could gie me advice , about two months aho i started having , sezures , or what many people are calling them , fits , spasms , they have ranged from one , to fourteen in a day , and at the beggining they were happening lots , sometimes they go away for a week and then come bck again - i get a very sore head , and my glands , neck feel swollen , i then feel dizzy or in another world , and my neck loses control , fall back , and my whole body convulses , and jerks , sometimes i lose control of water and i cry , but im not upset , also i stop breathing sometimes - after having these in hosptakl , the docs said i just had stress , and literaly threw me out of hospitalk , even whilst having one in teh waitin room , and having one whil leaving ! i was told i would get a neurology appointment in April , 3 months a way !
i went back to my city with my home/ job lost as i worked with kids and my employer fired me when she found out i had this ...i then had many in public , and a friend nearby called an emergency doctor who effered me to a neurologist in my city , howvere he treated me like i jsut wnated attanetion , and have me an egg scan ....it came back normal , despite having 7 fits while hooked up to the machine ...he siad he anticipated this result and no futher action would be taken , as he does not knwo what it is , or how it can be treated , and he think its will ...disappear ....at somepoint ! ive had my whole world tunred upside down by this , and i can honestly say i dont know what to do now , because i still have them , but no one will help me

Hi to all.

I must say that what a wondeful site this is! :-)

I am a 33 year old male in Leeds, England.

Last year I was diagnosed with a brain tumour after taking what I'd call a 'black-out-' fit and falling down the stairs and cutting my head open. I had been having, as my GP described it, 'funny turns' for a number of years, but they just wouldn't listen to me. Kept blaming it on my lifestyle, etc, as GP's do...

Anyways, I went to see the nerosurgeon that removed my tumor again today. He's referred me for another MRI again as says there's something sinister at work causing the epilepsy. I'd had it a while and the fits are getting worse again now - happening about every other day. Sick of the sight of Casualty by now, but, we need to push-on. :-)

Anyway, not sure about the Epilim my GP originally prescribed - made me ill and down in the dumps. Now my Dr prescribed Prochlorperazine for vertigo. That has a known side-effect of epileptic activity, but my Dr, again wouldn't listen when I asked him about this. Been told by emergency staff to stop taking it at once.

My final words... Good look to everyone on here and just make sure you know what any drugs the Dr will give you will do.

I am 51 years old and had epilepsy between the age of 5 until I was 12 I was discharged from the hospital at 14yrs. Assuming the last few years I have been in the menopause I have had some very weird and odd feelings that remind me of how I used to feel in my childhood. I was aware that I was going to have a fit as a child as I would get a funny feeling come over me, and although these feelings that I get now are not the same, I feel there are some similarities. A few years ago I was prescribed medication for depression which I took for about 3yrs and since coming off this medication these feelings have come about. I have spoken to my GP on many occasions about this but I am constantly told its panic attacks or anxiety. I saw a neurologist privately and had MRI and CT scans and was advised all was ok but I wonder if this has anything to do with hormones and the menopause. Also unfortunately my son who is 25 is having fits and I cant help but feel I have passed this onto him. He is on Keppra and topiramate medication but unfortunately after being free of seizures for 16months has just had 2! He is obviously very depressed about this, he has lost his driving licence, unable to find work etc and its all so depressing!

Like many of the other comments posted, we have had some difficulty in getting people to listen to us. My son is 4 and is also autistic, he has had every type of seizure including clusters of tonic clonic fits (5 in a row without gaining consciousness), drops to the ground, absences, tonic seizures and complex partial seizures, but we were told we were anxious parents who were overreacting by calling an ambulance. We have tried to get our son referred to a neurologist but keep getting told there is no need, and were also told there is no need for an EEG, but now they suddenly tell us there is a need for one. Our son is having several seizures a day and we still have not been told what type of epilepsy he has or if he has a certain syndrome. I wonder if any other parents are having the same problems or experiences and can give any advice. My son is also having episodes every evening when sleeping, his eyes roll up, he goes completely limp and cannot be woken. Is this a seizure? There are so many thing we do not know the answer to, we feel like we are living on a timebomb all the time, we never know when the next thing is going to happen. Thanks for reading this.

Hi,
This website is absolutely Amazing and has answered a lot of questions for me.
For the past 5 years, I've been having little "episodes", that are like zips of electricity and I can honestly say I feel amazing after wards, I seem to be the reversal of many other individuals. It starts off with an intense feeling of deja-vu which then leads to electricity flowing through my veins and intense heat starting from my head flowing down through my body. At the beginning, I get visions along with the deja-vu. Some of the them are incredibly real. But the main thing that baffled me was the immense feeling of happiness and joy! My brain seems to emit a happy drug that keeps me high for many hours after. It's almost like I see things for the first time, and everything is wonderful. Colours are brighter and everything is crystal clear, like watching a Blu-ray movie. I feel empowered and could take on the world. Very different to what I've read about epilepsy.

I visited my doctor, who was absolutely amazing, and she admitted to never hearing anything like this before, so she referred me to a neurologist. On my first meeting with him, he informed me I had epilepsy. He performed neurological tests on me, and booked me in for an MRI and EEG, but with no test results to back his diagnosis I was a little baffled by his boldness! He then continued to inform me that I was no longer allowed to drive and by law, he would be at liberty to release my notes to the police and DVLA if I was to have an accident. He also discussed putting me on medication. I sat there in compete shock! I couldn't believe what I was hearing. When I challenged him and questioned his prognosis, stating that the test results may come back normal, he still stated I had epilepsy. I have had the tests and I am now awaiting the results.

I have an appointment with my doctor in the next couple of days where I hope to file an official complaint against the neurologist. Reading the stories, where doctors don't take the patients seriously, it seems mine is far too eager to label and file away another patient into the vault...another good job done!

These people have to be challenged, for the greater good of us all. Good luck to everyone having to fight the archaic, dark ages of the NHS. You're not alone in this.

heyy
my name is cassie and my bro has epilepsy he hates it he cant move out coz he needs mum be with him all the time hes 19 hes out of school he wood be havin about 9-15 fits a mothe i get so upset 4 him he wants to live hes life like a 19 year old boy does he startr fitin at the age of 2 thats what i got told by our mum coz i was not boen the im 16 and i love my bro i want take it of him put it on me then he can live like a 19 yera old boy does but he likes hes life (thats what he tell us) my bro mark* gos in to a stare fit and every one tess him when he went to school and now they do the same to me coz hes my bro and i hate it when they call him name i get in to fights coz of it but i dont care i love him who he is not what he got or what ever
cassie xx

My son had a serious RTA just over 3yrs ago, he goes in these trance like states, where he has no facial expression, doesn't respond when you talk to him,i thought it was just adolescence, but when he does respond its like you've just woken up, he's eyes remain open, he remains standing, could this be some form of epilepsy, he is awaiting a date for neuropschometric testing, as they aren't sure if he has frontal lobe damage due to his accident, have explained this to my GP and he's trying to push for an appointment for these tests asap,

I would definetly go back for a second opinion here is my story

I have just recently (may 09 ) with temporal lope epilepsy

On Feb 16 09 I was at work all was normal then all of a sudden i felt a strange sensation undescribable and then my right cheek stated twitching and next thing I know i woke up on the floor with everone in my dept above me comporting me very embaressed i was and scared well since this was my first seizer ever I was tranported to the ER I remember all of this until I got to ER I took a turn for the worst I started have grand mal seizer up to 20 to 30 a day I was in ICU for 3 weeks In very bad shape they were preparing my family that i may not survive this and if i did they were not sure of the brain damage i would have I did not eat or drink for 16 straint days they had my on a wide variety of seizer meds called a cocktail seizers slowed some but was still haveing alot they were going to put me in a med induced coma and on life support and opted not to for fear the would not be able to bring me out of in my condition was so bad they were trying to get me into ucla and with them having no beds they were going to med vac me to conneticut but i became to unstable to transport all test they could possibley do was done first eeg showed abnormal brain waves on right side and it would slowly trasfer to left next 2 eeg were norm and all mri and blood work were done so as time went by the were baffled so the final diagnoses was they were psudo seizers and to see a phycologist i was so confused and baffled i lost 3 weeks in ICU to be told nothing is wrong so the weaned me off my meds within a week my seizers were back not as bad at all so went and got a second opinion done the Dr did his own eeg and stated to me will get back to me with results in a mo well eeg was done and as i was leaving nurse told me the dr wants me in the next day and he told my i have temporal lope epilepsy and the reason for the 2 eegs done that came back normal was due to the fact I was heavely sedated on anit Seizer meds and if i even had a seizer it would not of showed that is why the first was abnormal due to not being on any meds so go go and follow your gut and good luck