I have had epilepsy since age 50 and have had many changes of medication none of which have worked for me.I find it really scary as the seisures are so erratic from once or twice a year to as many as 6 to ten a year including multiple seisures .I also never know when they are going to happen which is the scariest thing of all and never remember anything about them.My latest medication is lamotrigine which has been increased from 100mg to 450.I am just hoping this might work but have little hope it will after 19 years .I don't let it ruin my life but maybe its because I have lots of family to support me .I have grand mall epilepsy by the way .One thing I have found is I have become very emotional lately while discussing it at appointments and that really can be embarrassing.I wonder f others have the same or similar problems?
Epilepsy first entered into my life when I was five years old many moons ago.
The grand mals (now known as Tonic Clonic) returned every few years. However these days I do not have the tonic clonic or only after many years apart.
My epilepsy has changed many times of the years and at present I have Complex Partial Seizures in my left temporal lobe.
I usually receive an aura prior to the attack/s. My auras always scare the living daylights out of me and have always been of the same format.
The bad part to me is that my epilepsy can often be with me for days and nights with hardly any respite. In all that said time the 'sacredness' remains with me all the time.
You know that you have the right to ask your GP for a second opinion.
If you live in the UK and you want a good listening voice simply dial
Thank you for your reply Richard .I do know now its called Tonic Clonic as I looked it up earlier today due to curiosity .Unfortunately I am wary of talking personally to anyone about my emotional experiences .That's his probably due to things from my childhood unrelated to this subject .That was something I was very wary of discussing with anyone but did find the courage to do so and it did help up to a point.As to your experiences of (auras )i can have never come across that or your epilepsy changes .As for seeking a second opinion I totally trust my neurologist on the epilepsy part and just think its all about finding the right meds/dosage that will suit me I guess but have very little confidence as I said it will work .I think if it cut my seisures down a lot I would happily except that now.
I can only wish you well, but was saddened to read of the things that have steered you away from talking more openly to the experts (not myself I hasten to add) but the likes of Epilepsy Society.
Here's hoping that your epilepsy can be made to become kinder to you.
I really hope that you do as they are really wonderful people to talk to. They do not ask you lots of questions. Instead they listen to people, very therapeutic.
My tonic clonic epilepsy started with a TBI in 1985. The seizures happened a few each day . I was in a bad state . I had warning , a real awful sound in my right ear which was damaged and deaf . Weird , but I still get tinnitus in both ears . I first had phenatoin (allergic ) , and then carbamezapine (again allergic ). I was then put on Epilim , building up the dose to 2×500mg Epilim +50mg Lamotrigine a day in 1999. This didn't stop the seizures , but are milder . I can cope with that , I've got a neurologist involved . First one in years . Of course it's horses for courses , but there must be something to suit your needs . Good luck .
Hi daveeb you sound like you had a bad time from the start and different from my experience and also the tinnitus .Personally my first seizure happened on new years day aged 50 .I did damage my face but all I remember is lying in a bed in hospital .Amazingly my next one was the following new years day .Since then its been very erratic as I said in my original post .From 6 to 10 a year to once or twice a year and some in between.Also as I said no warning at whatever .I did take carbamezapine and quite a few others including tegretol the latest being Lamotrigine.Starting at 100mg and gradually working up to 450mg at the moment as I said.I have only been on the present dose for a month so don't know if it will improve anything but hopefully it will.I am glad your seisures have got milder and I am hoping mine will too.Good luck to you too.
Thanks for the reply Mike , it's always good to hear from someone albeit about something such as epilepsy . I have got a lot better since it starting . If anything it's just compounded by other things now , but as I say 'things can only get better '. Dave
It’s good you have come to our community to get support and advice from others. Living with the uncertainty of epilepsy can be very difficult.
I’m also pleased you have confidence in your epilepsy doctor.
It can take time to find the right epilepsy medicine and dosage. Especially when there are long gaps between seizures. As you are now on a high dosage of lamotrigine, if this doesn’t help it may be worth discussing with your epilepsy doctor if lamotrigine is right for you. They can review your treatment and they may suggest trying a different epilepsy medicine. There are many different epilepsy medicines available.
Like you, many people find their emotions and feelings can be affected due to living with epilepsy. How people deal with this is very individual. But I thought you might be interested to know of some ways we try to help with this.
We have our wellbeing information. Many people find that taking care of their wellbeing can help epilepsy.org.uk/info/wellbeing
If you feel it would help to talk or contact people who understand what you are experiencing, apart from our HU community, we also offer the following services; local groups, our forum4e online community, facebook and twitter. epilepsy.org.uk/info/suppor...
If we can be of any more help, please feel free to contact us again on this community. Or you can send us a private email to helpline@epilepsy.org.uk. Also Epilepsy Action Helpline freephone 0808 800 5050 is open Monday to Friday, 8.30am until 5.30pm if you want to talk.
Thank you Diane for your comments and they are appreciated .I do always discuss my medication with my epilepsy doctor and also the specialist epilepsy nurses I see.I actually have another appointment with my doctor in a few weeks so will discuss with him about a possible change of medication .Its only 6 weeks since my last seizure and I got another appointment within 2 weeks luckily and he did up my medication by 50 mg .But he did say if it doesn't not make any significant difference he would discuss some other medication .My problem is I have tried so many different medications none of which have made any difference .In fact my seisures have increased over the last few years but I am prepared to keep trying others as there is little choice to do otherwise .I don't do facebook or twitter as I just feel uncomfortable doing so.Also talking about it is something I find hard to do so except on these type of sites.Maybe because I did try counselling for this and childhood problems from the past and it felt really uncomfortable up to a point .I mean the lady I discussed it with was really understanding and helped a lot on a weekly basis for a year but then I just stopped seeing her as I couldnt deal with it any more especially the latter .But that's how I am .I may well try the email though .Thanks for your information
Mike.
My epilepsy wasn't diagnosed until 2008 but I have been "fainting" all my life. My earliest memory is when I was around 12 at school playing hop-scotch nxt thing I knew \i surrounded by my screaming mates and the school nurse who didn't even send me home or inform my mother. I was told I was too soft and fainted to get out of things and I believed them.
My epilepsy is SUDEP, my heart stops for 30 seconds (pacemaker fitted 2016) when I pass out I have no warning and no memory of them just lots of cut lips bruised eyes and general bodily parts bashed up, I even flooded the bathroom once when I smashed into the toilet.
I've lots of different meds over the years I was started on epilim now I take keppra and lamotrigine my doses have just been upped due to a serious seizure last month, I was out for over an hour and home alone and yes I am done in for the next 12-48 hrs. Takes me a long time to recover and I am always emotional during my recovery period afterwards. I find it very stressful but I have my ways of dealing with it.
good luck
in reply to
Its not surprising you got such negative comments when you were a child abra_cadabra as those days not many even knew such a thing as epilepsy .Hence their ignorant and unsympathic comments .Happily most people have a better understanding now .But there are still many ignorant people who see it as some sort of weird illness and avoid anyone suffering from it like its a plague .It seems you have gone through a lot and especially the heart problems and I wish you well on that .I too have had a few injuries to my face and legs quite a few times but not as serious as yours it seems .I have had seisures at some really unwelcome times though like during one of my daughters weddings actually when taking the vows .Also when at various vacations with my family even one at an anniversary of one of my other daughters 25 miles from a hospital and it was a really serious seizure .
I also had tonic clonic and partial seizures- couple a day when I was first diagnosed. It took me a long time to get the medication right ....partly down to lack of knowledge from the original doctor but I have been seizure free for over 20 years now. There is definitely hope that you will get more control. I'm still very much controlled as oppose to cured since I've had warning signs throughout that period. I don't generally talk about epilepsy to people I don't know very well because of the stigma but having people you trust to confide in is a good thing and helps normalise what can be a scary and sometimes lonely thing. I am also lucky to have had a supportive family in that respect. I could get emotional talking about it in the early days until I had accepted that epilepsy was now part of my life.
Good luck and I wish you a speedy journey to a treatment that limits your seizures 🙂
Thank you for your reply Slothlike .Its good you haven't had any seisures for so long and your right it can rarely be really cured and having control of is the best most can hope for .As for your doctor well I don't think any doctor including specialists really know what is the cause except it has something to do with part of the brain.The specialist doctor I have always been with is really good but has admitted there is still not enough known about the subject .I find that astounding really as so many have epilepsy and it seems not enough research has gone into it.Their is definitely a stigma to it but mostly from ignorant people who also think the same as any mental illness .Thank you for your good wishes and i too find it good to talk about it on sites like these .I never even mention my epilepsy even to most of my friends mostly because i don't want to possibly lose their friendship.
I also don't mention this to friends, mainly because I don't want to be disappointed by their reaction. I test periodically to see if attitudes have changed. Last time I did this was 4 years ago. I politely asked my work colleague to move a fan she had brought in on a hot day that was flickering in my line of sight on the desk opposite me. I quietly and in confidence told her of my condition and how flickering lights affected me.
This was met with derision and dismissal and she refused to move the desk fan despite there being air conditioning in the office. There then followed a lot of barbed comments such as "don't have an "epi" about it" in loud voices with her colleagues etc. which went on for at least 6 months after. I guess nothing has changed much since then. The stigma is real with a level of acceptance/permission in everyday life. I don't think this will change real soon so its better to keep this to ourselves and avoid the ridicule etc.
There are good people that are worth trusting but also a lot that are quite small minded and best avoided.
What an ignorant and also heartless person she is but hardly surprising as we both have experienced .I often wonder what their reaction would be if one of their own family members had epilepsy .Its sad really there are such people around .
That is absolutely disgusting & should be dealt with under your works bullying & harassment policy. I was embarrassed at first but now I tell everyone that I need to as it’s necessary as part of dealing with seizures safely. Luckily my colleagues have been kind & sympathetic (as far as I’m aware). It would be scary for someone who hadn’t dealt with a seizure before to do so without prior warning, so I personally think it’s necessary. You would hope people’s attitudes have moved on but unfortunately there are small minded ignorant people in the world that should be educated. It’s their failing as a human being to treat someone in such a way, so in a way we should feel sorry for them. To think at one time we would have been burned as witches!!
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