hi, i am 23 and i have recently been diagnosed with epilepsy, i need help please!

i have an extremely rude specialist that doesn't like to answer my questions, and it seems like he just wants to get me out of his office each time i go there, for the past 8 months i have been having seizures daily ( 5 - 20 ) maybe even more, i haven't been told what type of epilepsy i have, and to be honest i haven't been told anything about epilepsy.

i was just given tablets and told to come back in 6 months time.

firstly he put me on sodium valproate 200mg tablets, which did nothing for a good few months.

then i went back.. and he basically shrugged his shoulders and put me on levetricetam accord tablets, which i have been taking for around 2 months now, and nothing has changed.

it has been 9 months now, having seizures everyday, iv had to quit my job, and i have no social life now.

literally everything triggers my seizures, emotions ( laughing, happiness, sadness, arguing, excitement ect. ) also adrenaline also triggers them, even doing usual daily tasks like making a cup of tea can cause them.

flashing lights do not effect me in anyway.

also i do not sleep, i cant sleep, i don't get tired, and my specialist told me '' sleep does not effect epilepsy '' ?!?!

yet when i dont sleep, the next day my seizures, last longer and i have twice as many..

when i have my seizures, its like all my strength just disaperes, yet im fully conscious of everything around me but cant move or speak, first my face will turn, then my knees give way, usually i can keep myself standing and make it to a chair, but cant move my arms at all.

lately my seizures are slowly getting worse, i have asked my GP to send me for a second opinion, but the waiting list is soo long its unreal! it makes it worse that its been 9 months and i still no nothing about whats wrong with me, and its just frustrating which leads to a seizure..

i feel lost and i don't know what to do about it.

i would appreciate if anyone could, leave me a message / reply with any information or even what you think it could be that i have, or if you have the same as me or feel the same as me.

thank you, Nathan.

31 Replies

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  • oh i was perfectly fine in December 2012.

  • Hi there "Mr epilepsy" - I don't know exactly wht you are going through because i was 56 years old when my seizures started - "late onset epilepsy" is how ir=t is classified. however, that doesn't change the seizures themselves. I never had to suffer as many seizures as you do - I had 4/5 major seizures a week at one point (over 4 years). Mine were full blown tonic/clonic seizures ( unconsciouness etc and I kept on ending up in A&E because I lived alone). I had a lousy consultant to start with who was a neurologist but didn't specialise in Epilesy and I was on various medications to no avail. He was one of those who gave me all of 10 minutes when I had an appointment; I felt as if I was just taking up his time!! I felt, like you, totally lost - I didn't understand what was happening to me and everything I knew about epilepsy came from searching on the internet, not from my doctors In total desperation,I finally decided on speaking to my GP, again about it and she suggested anther consultant. I know it takes time - luckily, I had only to wait 2 months - and my life was transformed. He was a neurologist who specialised in epilepsy - and this is INCREDIBLY important - and the first time I saw him, he spent TWO AND A HALF HOURS with me!!!!!!!!! He even rang my son on an oil rig in the North Sea to ask him questions (he had seen many of my seizures). I have now been free of daytime seizures for 3 years !! I still have night time ones from time ot time - usually when I am very tired, stressed, worried or, like you , even when I am very happy - it is almost always a reaction to emotions.

    I can't find you a sympathetic, epilepsy specialist, unfortunately, but try your best to keep on pushing for an appointment with an appropriate consultant - maybe if you "shout loudly" enough, someone will actually listen. Is there perhaps an Epilepsy Support group in your area - as you have realised, speaking to people with the same problems can be incredibly supportive.

    I don't know if there is anything else helpful I can say - just don't give up on yourself and your epilepsy - I am pretty certain that, even if it can't be totally controlled (and maybe it can, you know?!), it can be improved radically.

    Please feel able to come on here , even if it is just to "yell loudly", if nothing else!!! - there are lots of us in the same sort of boat.

    Take care

    Margaret

  • Hello. I don't know where you live but if you are in the UK, why not get in touch with Epilepsy Society? See link below. My 23 year old daughter has severe and unpredictable epilepsy and although she has good consultants, Epilepsy Society have always given us terrific advice.

    epilepsysociety.org.uk/

    I wish you all the best, Robert

  • I took drastic action and had neurosurgery done in dec 2013 best thing ever wld do it again if the need arose

  • Hi what actually happens when you have neurosurgery? my 27 year old daughter has epilepsy and her neurologist has suggested this but we felt it was a bit extreme.

  • Hiya you go through lots of scans test mri and videotelemtry thats where you have wires attached all over your head to a small box you carry with you for five days as they reduce your medication it picks up the seizures you are in hospital the whole time with all this info they can pin point exactly where they need to be in your head i have a c shape on my right side they shave your hair then you a scalpel to cut the shape then drill small holes to get into your scull then they go in and remove the affected part of your brain then put u back together then all you see is staples i had 36 and was bald in that area it was never ever sore my hair has grown in alot since the twelth of december it had been the best thing ever if she has been given this opportunitu i would certainly take it iv been seizure free since november it was a life line after surgery it takes months to get back to full fitness i am nearly there go for it :-)

  • Nathan,

    I just wanted to back up what Margaret said. Contact the various epilepsy societies. You may be able to find out from them, or from people on their forums, the name of a good consultant in your area who you could be referred to. We had to get a second opinion for my son and it has made all the difference in the world. (I have also found The Cerebra organisation very helpful - they are not specifically epilepsy focused but v knowledgeable and supportive).

    In our experience once my son found a medication which suited him (Sodium Valproate slow release tablets in his case) life became much easier. Unfortunately, this can take some time. It sounds to me as if not much thought has gone into your meds plan as 200 mg sounds like a very low dosage of SV. My son is on 1000mg and is only 10 years old! We had to slowly increase his dosage until his fits were controlled. It sounds as if you were stuck on a low dosage which was never changed. However, please note I am not a medial professional so there might have been a reason that you were given a low dose which was not increased.

    Finally, as Margaret says bang on as many doors as you can. Make regular apts at your GPs and tell him/ her how your condition is affecting you emotionally. Sometimes they can speed things up. It isn't fair that we have to make a nuisance of ourselves to get the right treatment but it's necessary I'm afraid.

    When you are first diagnosed and trying to find the right treatment it is a very bewildering and frustrating time but it will improve. There are many people ( outside of the NHS) who can help and guide, and, as Margaret said, just listen to you.

    Now go and bang on some doors!

  • Hi my daughter is on 2500 mg of sodium valproate and I agree it does take time to work. She is in her early twenties and was diagnosed about 5 years ago, she had to keep increasing her dose until the seizures were controlled. She has not had a seizure now for around 4 months. I get very anxious about her having them and worry all the time about it happening.

  • Hi Mr Epilepsy I have suffered with Epilepsy for near on 50 years now, having various types of seizures every day most of the bad ones are at night now. I have had quite a number of consultants due to my partner pushing to get answers to why nothing was improving, the one I have now has said there is no more he can do for me and be happy with the way the medication is controlling it. but 1 thing you will learn is you are lucky you found this web site I have learn't more about my condition since being on here than I knew before if I new you lived near me I would have spoken to you as some of the symptoms you are having are the same and speaking to someone with the same condition does help but as Margaret said you must bang on as many doors as you can you can't carry on like you are.

  • I had to go through my gp who put

    Me in touch wi sumone at the hosp as the consultant was extremely rude and not helpfull and i have tried all sorts of meds with no luck so now i have opted for surgery ask your gp they might be able to help

  • Hi Jules. My 34yr old so had the same problem as you with our loical Cardiff hospital. He then married and moved to Nottingham, where, with the help of his wife, who would not let it go, eventually after three yrs went to London for surgery, after many tests. He had the part of the brain taken out that was causing his seizures, and since the operation 3 yrs ago has been seiuzure free. Dont give up, and I wish you all the best. I have also had Epilepsy for 50 yrs, and a couple of other family members have too.

  • Hiya thanks for the reply wont be long now 14th dec i go for surgery i am nervous as hell but wot is drivin me forward is being free

  • What happens in this procedure as my daughter was offered this by her neurologist?

  • Hi Georgi04. My son had to go London for a battery of tests over a few months back and forth from Nottingham. The final test is where they put electrodes in yuour brain so they can tell which part the seizure is happening. They then wait, and record each fit you have over days, and once they are sure they go ahead with surgery if it is possible. They take out the part of the brain that's causing fits, then put you back together. 3yrs on and no seizures(hooray).. The hospital he went to in London was fantastic, right next door to Great Ormond Street Childrens Hospital. I wish you all the best and let me know what happens to you. Good Luck

  • Hi MrEpilepsy,

    I can relate with you on some accounts here!

    I have been to some specialists and doctors/GPs who were also extremely and unreasonably rude and dismissive, which annoyed me at the time as I felt it was something personal..., but then I found out why they are like that: they dont know the answers about epilepsy! And doctors hate to admit that they dont know, whatever it is, it is just beneath their god-like dignity that comes with being a "doctor" to admit that they do not know something.... And epilepsy is something that doctors, at the end of the day, do not really know all that much about. What causes it? They dont really know: maybe its genetic, maybe its this or that..., but they dont know anything for certain.

    Im not dissing them all completely on this matter, as I am grateful to have my epileptic seizures under control since well most of my life now. I was diagnosed at the age of 15 after suffering 3 separate incidents of fits with blackouts. The specialist then (well respected in his field) gave me a long list of advisory do's and dont's and prescribed my the correct medication, sodium valproate (Valpakine, Sanofi), which I have been taking ever since (I am now almost 40), and it has on the whole (except from some isolated incidents) had me under control and has allowed me to lead a normal life in almost every way.

    I am fortunate that my epilepsy was of a minor condition/level. I hear your account on the level of severity your epilepsy is, and I cant imagine how difficult life must be for you. But most important thing is not to feel this is the end of life as you know it, you must keep the faith and hopes up that you will find the way to control this condition and go back to leading a normal life. One particular piece of advice regarding the sleep element: your doctor that said sleep has nothing to do with epilepsy should be sued or something, because that is total and utterly false professional advice to give a patient. My specialist from the start, one of his pieces of advice was to always get a minimum of 8 hours sleep, and that if for any reason I wasnt able to get as much as 8 hours sleep on any occasion the I ought to try to find the time during the following day to make up for those lost hours of sleep, because sleep deprivation is a triggering element for epilepsy - fact, I can tell you that!

    Any other advice you need, you are more than welcome (edweb98@hotmail.com).

    All the best!

  • * (sorry, "Valpakine" is the name given in south american countries, "Epilim" in the UK).

  • Ask for an MRI. My epylepsies started all suddnly because of a tumour in my head.

  • Everyone has already given you plenty of advice I expect all I can say is I have had epilepsy for the whole of my 46 years and have tried an op 3 years ago nothing has helped you just need to find the best doctor yo can and believe me stress and over tiredness are the worst thing to cause epilepsy to be worse! Once you get into a routine you can get back out into the world and have fun!

  • I was diagnosed when I was 19 but they reckoned that I had been having nocturnal seizures after contracting meningitis when I was six. The first couple of 'specialists' did very little and the scant medication was of no use what so ever. I wasn't even told the medication was likely to be for life therefore I didn't reorder when a batch ran out!

    Fortunately after a move to Oxford I actually found someone who knew what they were talking about. Things took a step forward. After copious tests, one of which meant staying in hospital for a week having a continuos EEG another small step was taken.

    After the neurologist retired I went to his replacement - a woman who was an epilepsy specialist! We spent a lot of time discussing lifestyle, any possible trigger related fits etc.. After a bit of time closely monitoring patterns etc. we found a drug combination that didn't solve my fits but considerably reduced them - enough to allow me to get back to work. Of considerable help is the fact that you are allowed to be asked to be referred to a hospital of your choice even if it is out of your region. Find one with an epilepsy specialist and ask to be referred. It might be an opportunity to move things forward.

    Good luck

    J

  • hi mrepilepsy,

    I suffer with tonic clonic epilepsy and it sounds like that is what you have. I was on tablets but none of them worked so they gave me a vagus nerve stimulator ( vns ) which has reduced my fits from a 138 in 6 months to 10/15 every 3 months which I am so happy with. so see if you can get your doctor to get you one coz they are great.

  • Honestly I don't think he has given us enough information to say what kind of epilepsy he has. There are very many which are very similar.

  • Hi there,

    I'm so sorry for the situation you are in. I am 27 and I had seizures regularly from the age of 14 to 21. I have a type of epilepsy called "juvenile myoclonic epilepsy" which is probably not what you have, because it normally starts around puberty, but I had 3 types of seizure: tonic-clonic (classic falling to the floor and twitching type), myoclonic jerks (like when people are falling asleep and then jerk awake) and absence seizures (where I would "drift off" and wouldn't be able to pick up the thread of a conversation I had been having). You should check out some of the epilepsy charities websites and see of you can identify what kinds you are having. I always found Epilepsy Action really useful.

    Several worrying things about your post: SLEEP IS A MASSIVE TRIGGER!!!! It has always been my main trigger. Also, 200mg SV is a TINY dose. I took several kinds of meds before we found what that worked, but when we did it was SV in the form of Epilim Chrono. I took 1200mg per day for a long time and have recently reduced this to 800mg per day which I have been told is a very small dose. I don't understand how your doctor can call himself a "specialist" if he doesn't know these things.

    One of the reasons I was not put on a medicine that worked for so long was because I also had a rubbish consultant for a while. There was no neurology dept at my hospital so I was put with a paediatrician as I was still a child. Although he saw all the children with epilepsy, we realised after we'd stopped seeing him that he knew nothing about epilepsy. I didn't transfer to a proper neurologist until I was 19 or 20. Luckily when it first started I only had seizures once every few weeks so it didn't matter too much.

    At the moment I don't see a consultant, but I do see a GP every 12 months so they can sign off on my prescription and a specialist nurse, too. I would suggest you make an appt with your GP and talk to them about the concerns you have. It sounds like you are a reasonably serious case if you are having seizures every day and they need to be keeping a close eye on you. When I was first diagnosed I was given a brain scan and an EEG (where they attach wires to your head and measure your brainwaves). If you haven't had these you need to tell your GP. They need to check that it isn't something like a tumor that is causing your epilepsy (chances are it isn't - most of us have no idea what causes it, but they need to check). Hopefully your GP will be able to put you in touch with another specialist or at least contact your specialist and discuss the concerns with them.

    I wish you the best of luck. Please message me if you want to chat about anything.

    Amy

  • ERM DOCTORS, i well and truly understand the problem with docs at the moment i want to stick several docs head in a drawer and repeaably shut the drawer on said heads.

    My advice is try and get a hospital consultant. The reason for this is for nearly 10 years this condition by various doctors was in my head(i.e just imagining things) and i in no way suffer as much as you. I then got a consultant at a hospital and she diagnosed me with sub clinical epilepsy; and told me i had it for all the years the doctors had told me i was just nuts!

    After that after a few false starts on various drugs i am now on 200mg of epilim which seems to do the trick.Expect i avoid stress, can not even navigate my own town and now going through the term in england that there is no problem getting a job in england with epilepsy ( 53 no job on the dole nearly thirty years)

    So try and get a consultant, your life may not become perfect ; but its a good start. good luck

  • sorry to read this distressing story...........keep worrying your G.P to send you to a different neurologist and ask about having a VAGUS NERVE STIMULATOR (V,N,S) fitted. It is a bit like a pacemaker for heart problems. and is a day operation. Also contact Epilepsy Action on Freephone 0808 800 5050 or epilepsy.org.uk they can give brilliant advice and it is free. Good luck

  • Hi Nathan ask to see another Neuro immediately.....request Keppra as its working for me at the moment (touch wood)

  • I feel so sorry for you i wld go back to my gp and ask for help

  • Hi Nathan, I suggest you make a complaint to the NHS Chief Executive. I've had to do that a few times with different things, but i'm lucky that I have a good epilepsy doctor. You can also tell your doctor that you want to be referred to a Consultant Neurologist, they don't have any say in that, you can even put a complaint to PALS who work for the hospital, they can put you in the right direction. Let me know how you get on if this helps in any way.

    You take care

    Sandy

  • Hi Nathan, around a year ago that sounded like me so I would suggest first joining a sports team or something that'll nit you back into the social pipeline. Hopefully this'll calm the stress and give your mind something else to focus on.

    Second, the thing I used to do when I felt that I was maybe going into an episode, would be (it sounds stupid) to tap with my left hand once and then twice with my right as fast as I could. I guess it was just the nack of thinking about something else.

    Obviously everyones different but I hope this helps :D

    Good Luck

  • Hi Nathan, there is no need for a rude Neurologist or Doctor and if not happy, go through the internet and try and find one near you or close to your area. You are not bound to stay with the same doctor and sometimes when one has a happier doctor, it is so much easier to talk and find out more information. A lot of doctors just want the consultation fee, its 'in and out' so fast and another prescription! We are treated as 'guinea pigs'. Feel free to also report the doctor to a higher authority or have him investigated for his conduct to patients. I am under a local Govt. Hospital and have a great woman doctor, who spends much time with each Outpatient to investigate their problem further. You will find the right one... Have faith! Keep looking!

  • I tried all the medication going nothing worked but i met up with epileptologist and he changed my life i had neurosurgery in december 2013 and they are gone i havent had one last one was november last year jst before my surgery and it was a long haul but totally worth it and yes lack of sleep makes seizures worse much

    Worse i would get a second opinion if you are not happy and its your right to ask and for another doctor dont be put off :-)

  • I totally agree with Jules 1973. My 38 yr old son had surgery in London three years ago, after a battery of tests before they could do it, and no zeizures since, much to our delight. I have epilepsy sine 11yrs old, and now 63 and zeizure free for many, many years. I take Phenytoin and Lamotrogene which work for me. My father was a sufferer as is my 38yr old niece, so good luck with everything and let us all j know how you get on

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