I found my own symptoms by web also. My mom died on 2005 and I got TLS. I smack my lips, pick invisible lint from my clothes , bang my hands on surfaces, clap my hands so I'm told, but before all this is the aura which is when the room seems to becomes brighter. If someone is around that knows of my gift I yell episode to make them aware because if there is something in my hand I drop it on the floor , on the street etc... I can not take the medications as I ended in hosp. from tegretol & dilatin. My episodes after all this time are still every other month w/ no meds.I live in NY so I don't drive I cross the streets only when I have the light and wait up against the wall for the subway and wear handbags that loop around my shoulder. I fear now I'm about to be a grandma and I want to keep my grandbabies lots. Yes grandbabies TWINs for the first time. GOD BE WITH ME FOR THE FIRST TIME IN FIVE YEARS MY TLS SCARE THE HELL OUT OF ME. The side affects were worst than the episodes.

DON'T GIVE UP! It took the doctors I was seeing 3 years to diagnose me properly. During which I was called a liar,attention seeker, One Psychologist even decided I was being abused which I wasn't. Eventually I was referred to a specialist who knew what he was talking about and I have had surgery for my epilepsy. It is much better. That all happened when I was a child I am now 33. Try getting a second opinion from another neurologist.

This morning is the start of the rest of my life. Better get used to it.
My husband flew to New Zealand yesterday for two weeks, so thank you for being here. Don't feel quite so alone.
Saw the neurologist yesterday. Probably simple partial seizures. 2 years of 100 random deja vu with nausea and whooziness. MRI clear, EEG on Monday. Not so simple though is it? Came to this site and read some of the comments. Not alone am I?
My (very nice) GP wasn't interested in my symptoms "Deja vu is a universal condition and I won't waste NHS money on getting it investigated." But a life insurance company persisted.
I'm 61 next week and in general good health and not on any meds. Loathed to take meds, I always seem to have side effects. But if it means I can drive and reassure my children that I'm safe with my grandchildren, then that's what I'll have to do.
i already write two blogs, so will start one on this new stage of my life. I think it will help me.
The consultant didn't think stress has anything to do with it - I do. A dying father 200 miles away who, at 92, is hanging on to life three and half years after a six month prognosis.

Hi Darren

I've had similar symptoms to you and have never had a full fit, but have had a number of simple partial seizures whilst at work - about 7 yesterday! Fortunately my company have been really supportive and my boss is very understanding and adjusts my duties if she knows I am having a bad day. I realise I am very lucky (especially as I come to the end of my probation period this month). One thing I would say is that I believe Epilepsy is covered under the Disability Discrimination Act, which would apply irrespective of your length of service ( I believe). I realise it's not the best solution but maybe something to think about if you feel up to it. Good luck!

Got my diagnosis today. Have experienced deja vu occasionally but nothing too strong. Then 2 weeks ago I had a wave of deja vu engulf me and then lost consciousness for 20 secs and landed flat on my face in the office. Have an MRI booked in 3 days and am waiting for an appointment for an EEG. In some ways I feel lucky that I have Bupa coverage but all this seems to have done is bring the inevitable consequence forward. My lifestyle and career are very similar to that of Nigel and I am so concerned about the DVLA reaction. Without the ability to drive I will feel very vulnerable and helpless. I have been prescribed tegretol but have yet to get the drug as I have a natural reluctance to start the ball rolling. How is it possible to get your license back within the 12 month timeframe? What actions are required? My previous deja vu experiences were very light and I had no taste/smell indications. Also I show no physical signs of seizure or fitting. Really feel at a crossroads at the moment not knowing what to do for the best Feel like maybe I should not have sought any medical advice as it will have such a negative impact on my career, mobility and social life once the DVLA treat me as an outcast. Any advice from someone with experience will be appreciated.

thanks Nigel, and humor always helps...i was diagnosed w/ temporal lobe epilepsy at age 15. now that im 42 and going thru menopause...i have complex partial sezuires where my right leg just jerks on its own..like its not part of my body??...hormone related im convinced..but yes, stress plays a HUGE part in any epileptics life, as well as enough rest, good diet. and all my eegs', MRI, EMG scans all have been normal. i started out taking tegretol..at 15 but when i was prego..switched to phenobarbitol..now added, topamax, depaokote>>>>> UGH
thanks for sharing your story.

Hi i have recently been diagnosed with temporal lobe epilepsy, i was very shockd as i did not expect this... all my life i have felt different almost weird and afraid for no apparent reason. i get an awful taste and smell of leather like a glade air freshner is plugged in at the back of my nose.
i have also had 3 jerking seizures i never remember these, but i feel so consious about going out as i nearlly fell into the road and was lucky i had a friend with me this happened just before i had my jerky episode during which i am concious but unaware and tears stream down my face afterwards i am either sick of feel ity and i am very exhausted even after having de ja vu or vaccent episodes as they are all so frequent.. i feel a let down to my family as i have a husband and four children. i am a very independent person and having to rely on others is hard as most days i am too exhausted to do normal day to day tasks.. my youngest is 16months old and when he was 13 months i had an abscent episode and never realised he was on the bookshelf as i was so confused after.. so at the moment i constantly need someone around me for the sake of my children is this normal or am i just strange.. if anyone else had this please let me know.. i am on lamitrigine 100mg i am still getting episodes frequently. i am also having the ,most awful dreams of cartoon charecters and whiches trying to get me and often find myself sitting up not knowing why during the night.

hello mike my ten year old son connor has just been told by our local hospital after a mobile eeg that hes got temple lobe epilepys since my son was 10 mouths old hes sufferd with fedberall convolsions hes had a total of 47 times hes been rushed to hospital ,i found your letter very helpfull to me and my wife as you say you sometimes get this over whelming feelings these are what my son calls dreams and the things you do like upset and holding your head hes the same and its very helpfull for us to read of other people suffering with the same things thanks, dated 5/3/2010

Hi Michael - sorry it's a long one, not good at brief answers!

I was finally diagnosed with TLE (Temporal Lobe Epilepsy) in 2004 at the age of 39 after I started having simple partial and complex partial seizures - what used to be known as petit mal seizures - you can find more info on this website. If you lost consciousness you may have had a complex partial seizure. Your message rang a bell with me about how I have experienced seizures both before and after diagnosis.

I'm one of the more awkward ones in medical terms as there is no apparent cause for my seizures - I've had EEGs, brain scans etc, but nothing physical was found. Luckily for the medical profession my seizure pattern and symptoms are pretty classical...

However I can sympathise with how you are feeling. I've talked a lot to my current neuro and epilepsy nurse about my past, how I'd had terrible emotional problems that didn't dissipate with drug treatment such as anti depressants all my life, that caused me low self esteem, difficulty in getting on with others, hard to control emotions and mood swings, etc and they both felt that these were symptoms of my epilepsy.

Recently, because of a high Tegretol (a drug used to treat certain kinds of epilepsy, commonly Temporal Lobe Epilepsy) count on a blood test I was advised to reduce how much Tegretol I took daily: I duly did this until one day on the bus (yes, had to hand in licence, hooray for free bus passes!) I was suddenly overtaken by all the old fears flooding back and felt very upset and panicky - I was glad to get off. I realised that I'd reduced the Tegretol too much and so upped my dose slightly again. Result? I feel more "normal" (whatever that is!), calm and not on the emotional roller coaster that dragged me down before... I still have awful days where I have a terrible feeling of doom, panic and it will root me to the spot. It's a type of seizure aura, and it is most commonly experienced by people with TLE.

When I have a simple partial seizure it will go a bit like this - feeling of doom, deja vu, dizzy weird indescribable seizure feeling and then a terrible tiredness where I need to sleep for several hours and may feel knocked out for days after. I need a lot more sleep in general. I forget/mix up words most of the time now (the Tegretol may be mostly to blame), but it's especially bad after a seizure. After a seizure I also get spelling mixed up and find it hard to do simple tasks. Some (lucky?) people will experience euphoria instead of doom. I also get a rising in my stomach feeling sometimes; weird smells or hearing things like a radio just out of earshot; visual disturbances and occasional hallucinations - flying mice was a "good" one! I also have problems answering direct questions, I need a bit of time to think about them. All that and more, plus emotional turmoil...

I'm not saying that my experience is similar to the reason why you are feeling like this, but I think you should get your GP to send you to the Neurologist again and tell them how you have been feeling in depth, don't leave anything out as it could be important. The extreme tiredness could be that you are having seizures in your sleep, or it could be something else. Either way I feel it sounds like you need further investigation. Some neuros are better than others (pers. experience!), so try and find out if there is an adult epilepsy specialist at any of your local hospitals and ask for referral there. It could also be stress related - did you get much support after your diagnosis? You need a professional medical opinion as there are many causes.

Good luck and hold on in there, you are not alone!

Joanne you must stop driving immediatly.
I have had epilepsy since I was 11 and have been fully controlled since I was 20 with no seizures since then. When I was in my late teens and rebelling against the 'unfairness' of having epilepsy I stopped taking my medication regulary. At the same time my favourite aunt started to have the same symptoms as yourself. She was a company director in a large engineering firm and even though she was told that the liklihood was a diagnoes of epilepsy, she decided to continue as before and not be medicated. She had her first grandmal (or stage 3 in your terminology), while driving 6wks later and she and the driver of the car that she swerved into were both killed and a child in the other car was crippled.
I started taking my medication immediatly and have not stopped since. I realise I have been lucky to become stabilsed but as I appraoch the age of my aunt and my children are my age when my aunt died I realise how much she paid for the decision.

You may also find your licence will be revoked by your consultant contacting the DVLA, and it will be much more diffucult to get back if you did not voluntarily surrender it - and you may not be covered by your insurance. they will check recent hospital and medical referals if you are involved in an accident . even if you are the innocent party.

Please reconsider your decision not to medicate and to drive. Not medicating properly is also a red flag for SUDEP

I am a 55 year old male, and was diagnosed with TLE 10 years ago, though it seems now I have suffered it all my life. Because I didn't have full blown seizures it never entered my head I had this condition? My seizures would start by deja vu, or a smell, a sound, light flickering through trees etc. I would then feel sick, unlike any sickness you could imagine, I would go dizzy and my left arm would hurt so much I would hold it, if I was standing I would sink to a squatting position until it passed, usually a few minutes. After this I would be very tired and sometimes fell asleep for half an hour or so. After all this I had a feeling of disgust.

I was scared but eventually went to see my doctor, thinking I was having heart trouble because of my arm hurting? I went through all the usual tests, but couldn't have an MRI because I have a piece of steel in my right eye, so had a cat scan instead. There was nothing to see but the EEG showed TLE. After a few sessions with the neurologist it turns out I have had this since about 7 years old. I was given Tegretol (Carbamzepine), but they made me ill (I felt like I was floating above the bed). I am now on Lamictal and the seizures have stopped, but all the other effects of epilepsy are still there emotional, smells, hearing etc. I was in engineering, and naturally I lost my job within two weeks of being diagnosed, I haven't worked since, and just to make things more easy for me the DWP decided after an interview, even though I now have autoimune thyroiditis, tinnitus, high blood pressure, cholesterol (because of my thyroid), and a worn spine which gives me considerable pain, I am fit for work! Who would employ me? I had my money stopped straight away, and they never got in touch again! Thank God we live in a caring country.

Although I wouldn't keep it a secret I had epilepsy, I can see now why some people do! The stigma that goes with this condition is there. I have had people actually step back when I have told them, as if it was catching? Some people just avoided me. It's like no other illness I can imagine. Now, I don't mention it.

It has been extremely interesting reading your comments. I started having 'funny turns' about 4 years ago. I was terrified when it started happening as i didn't know what it was or what to do about it. I got embarassed. There's no pattern, just different strenghts. For me, I like to descibe my 'funny turns' in 3 stages.

Stage 1 - AURA a strange feeling difficult to explain, a sinking in yr stomach, you know stage 2 is coming. As soon as i get stage 1 i try and go somewhere else where i am alone
Stage 2 - Complete confusion you don't know how you got where you are, you feel like you are going to pass out. the room is spinning, you feel u can't hear anything but u can, you know where you are but it feels strange and you don;t know how to work anything (e.g. in work i try and go to the toilet out of the way, i lock myself in the cubicle but not sure how to close the lock)
Stage 3 - Complete blackout (only happened to me once, a terrifying experience)

I also have mini ones. The deja-vu thing, it's also called jamis-vu (this is where something familiar to you e.g. driving your car becomes unfamiliar).

My boss thinks it becasue i got up too quick, my friend thinks its panick attacks. No one seems to take it serious. I have had an EEG and MRI and they are normal, i thought this was great until i was told that in more than 50% of complex partial seizures have a perfectly normal MRI & EEG.

My consultant is 'almost 100% that these are not panick attacks' and the only way to prove this is to take medication but this means i cannot drive for 1 year, I have decided not to take the medication. I have approx 10-12 stage 2's over a 12month period, and more frequest mini ones. I don't know whether i am doing the right thing. I guess time will tell.

Hi Nigel,

I need some advice... For about 2.5 months now my partner has been suffering regular episodes of deja vu, with a sick feeling in his stomach. There's no pattern to them, but they seem to occur every few days. He said he remembers having a couple when he was about 13, and then again when he just started his new job about three years ago..then nothing until now. I eventually managed to convince him to go to the doctor, i'd done some research and come accross simple partial seizures. Everyone laughed at me and said it was rubbish and that everyone gets deja vu from time to time, but i'm convinced this is what he has. The doctor did bloods and an ECG, all completely normal, and said he wasn't going to refer him to a neurologist based on a 'funny feeling'. I'm sick with worry as i know there's the possibility of it causing grand mal seizures, and also how it can be a symptom of a brain tumour. My partner is happy with what the doctor said and isn't going to go back and insist on being referred, he's told me to stop worrying as it's nothing. I just don't know what to do next, I can't force him to go back to the doctor! But i feel like i'm just waiting for the moment something bad will happen like a grand mal fit in order for people to take me seriously. Obviously i'd give anything to be proved wrong! Please help! Rachel

Hi Julie,

I have temporal lobe epilepsy and can relate to some of what your daughter is going through.

Obviously I don't know all the medical facts of the case but it seems to me that you are not being treated appropriately by either the consultant or your doctor. At the very beginning of my epilepsy I had an appalling doctor. Luckily for me, I was able to register at a different surgery where my new doctor immediately got the ball rolling in the right direction.

Have a look here regarding your rights:

http://www.adviceguide.org.uk/index/family_parent/health/nhs_patients_ri...

Perhaps a visit by you to your M.P. would help to focus the minds of all those concerned.

Good Luck

Graham Proctor

I have recently been diagnosed with Epilepsy after 2 years of badgering my doctor. I first went to my doctor complaining of light headed spells and having the sensation of falling even though I was in the same position (Sitting, Standing etc). I was sent for blood tests as he thought I was enimic.

These came back negative and I was told it was because of my diet. It continued for a few more months and eventually resulted in me having a "turn" and feeling extremely drained and losing consciousness and having to sleep for hours afterwards. When I would wake up, I felt drained and my body ached. I went back to the doctors and he told me I had Vertigo and sent me away with medication. Months went by and there had been no change. By this time I had started to constantly feel as if I was almost in a dream like state, as if I was looking though someone elses eyes. With that and the occassional turn, I continued to go to the doctors, just to be given more blood tests and told there is nothing wrong with me.

The "turns" began to become more and more of a regular occurance. I wnt to my GP and was seen by a new doctor who said straight away that it sounded like a form of epilepsy and gave me lamotrigine there on the spot (which I'm not sure if that was the best thing for him to do) and reffered me to a consultant. After 2 weeks of taking the lamotrigine my "turns" worsened and I had 4 in the space of a week. This concerned me as I was due to double my dosage that week. I went to my GP and he referred me to EAU @ the hospital. They decided to keep me in for a few days to observe and perform some tests. I had my CT and thankfully that was clear, My EEG showed epileptic tendencies and I had my MRI a few days ago but havent received word as of yet.

The worst of it is.. I have recently started a new job and I'm in my probational period. I was in hospital for a total of 4 days and because of that, I am being given a final written warning for having 4 days off sick!!!! I had what I believed to be a semi partial seizure at work yesterday (luckily didnt lead onto a complex seizure) but I was that worried I would lose my job if I left, I stayed at work feeling like crap.

I feel compelled to share my experiences of TLE as it isn't common and undiagnosed can be very frightening. I am a 34 year old male.

Around the time I went through puberty, I started having feelings of detachment and deja vu, which would happen several times a day, several times a week and then disappear for months, before returning repeating roughly the same pattern. Explaining these sensations as any sufferer knows is rather difficult, making diagnosis by GPs who at that time may not have even heard of TLE rather unlikely. Too much caffeine was the best reason anyone ever came up with. I didn't drink much coffee when I was 10.

It was generally the aura I experienced through my teens rather that seizures, until when I was 24 and I had a seizure which caused me to blackout whilst driving. Thankfully nobody was hurt, but this incident did at least lead me to being referred to a neurologist. He asked if I would mind being the subject of a Q&A with some of his students due to the unusual nature of TLE. I accepted and probably learned as much as they did.

The upshot was that i was put on Tegretol (carbamazapine), the dosage of which has been increased over the years. With one notable exception, the seizures and auras when awake have been erradicated, but the seizures when I am sleeping have got worse, to the extent that my back seizes up so much I am immobile for several days after and taking painkillers for weeks.

I have now been put onto Keppra as well as Tegretol within the last few weeks, so it is too early to tell how well it's working.

I was concerned that perhaps the Tegretol was affecting my moods for the worse. The GP I saw (not my usual) agreed as this drug is used as a depressant for treating Bi-Polar patients. The neurologist told me it is in fact used for completely the opposite.

What i have learned is that nobody really understands this condition properly yet, and as such it is certainly worthwhile asking for a second opinion.

I don't know if any of this will help anyone, I'd had it for about 14 years before I was diagnosed. It didn't change my condition, but I was just happy someone had given it a name and acknowledged it was real.

Matthew Hannigan

My daughter has ben experiencing de ja vu for over 2 years now, she also has problems with her memory. and when these smaller attacks occurred she said that they made her feel as if something horrible was going to happen to her. In January of this year about 6am she experienced her first full fit. She was jerjing around, bit her tongue, frothing at the mouth and making the most awful sounds. We have been under a consultant for 2 years and despite this he was reluctant to put her on medication. She had 5 large fits again in May all during the one night and finally he agreed to put her on Keppra as a trial as he STILL wasn't convinced it was epilepsy.

My daughter was on Keppra for less than a month and I have to say she was unbearable, She flew into rages, attacked her sister, locked herself away in her bedroom and wouldn't speak to anyone. Eventually after smashing our car up by kicking it to pieces she eventually broke down and said how depressed she was. I contacted the nurse at the hospital my daughter attends for epilepsy appointments and she told me she was to come off it immediately. We gradually weaned her off it over the course of 10 days, but I have to say despite being told by the nurse that the she wanter my daughter to try another drug, The Dr over ruled her and refused to put my daughter on anymore medication.

Within 3 days of coming off the drug my daughter had another massive fit and was seen to by a paramedic as she was on Holiday with her boyfriend and his parents at the time in wales and because her boyfriend was aware of what had happened with the Dr and my anger that they had once again left us to deal with it on our own, he told his parents that I was going to ring an ambulance in future should my daughter have a fit so that I could get proof of what we were going through. My daughter had the previous day experienced at least 9 episodes of de ja vu and feelings of terror which has previously happened before built up to a large full on epileptic fit during the early hours of the morning. All my daughters fits have occurred at night but from midnight onwards.

We now have yet another appointment with the neurolgist but I have given up hope that he is going to be of any help as the last time he blamed me for her fits.

If there is anyone out there who could help me to try and understand what is happening with my daughter, I would be most grateful as I seem to be the one chasing around trying to find out what's wrong with my daughter and the person who should be able to help me isint. This all started around the time my daughter first started her period by the way.

Thank you
Julie Bartlett

I was so scared of the feelings of not knowin what I was doin or where I was, it is really upsettin when it happens. I am glad at least I know what it is now, still dont make it any less upsettin tho...