I've had epilepsy since a young age . Tried different medication when young till I was put on a high dosage combination of tablets .

[Funkylady1]

At 41 and two children later I'm no better and still on same medicine . The side affects damaged my kids and my self . My parents didn't no of the side affects nor myself ,nor did the consultants it seems medicine was untested back in the 60's . Is this medical naglargence .

[jules1973]

I am 40 and didnt get epilepsy till i was in my late twenties due to a brain virus and have been on a whole different kind of tablets if you are not happy with the tablet you are on go back to the neurologist and tell him/her that they are not suitable myself was epilem for ten yrs and it was like poppin pills for nothing i have found somethin that kinda works which is tegretol and zonisamide defo go back to the docs there are plenty more u cld try

[jules1973]

In a way no because everybody reacts different to different drugs i am allergic to lamatrogine while u might be ok with it

[Fifi74 in reply to jules1973]

Hi there. Can I ask how you knew you are allergic to Lamotrigine? I started taking it after a tonic clinic seizure when I was 36 weeks pregnant and in the last month have had more seizures than in my entire pregnancy. I am also feeling more irritable, sometimes aggressive and finding it very difficult to sleep. Any info on this medication would be great.

[jules1973 in reply to Fifi74]

Hiya i took it for a month with no problems and one day i saw a rash on my legs it was spreading as fast i was looking at my body i also had severe stomach craps very loose bowel movements and i felt ill i lost a stone in weight in a week when i came of it all those symptoms went away i have tried alot of different stuff and my body cant tolerate any of them even the ones i am on the now but i put up with it lol

[Chimbelina in reply to Fifi74]

Lamotrogine definitely didn't suit my son. He was 'racing' on it and completely out of character - it was scary. Whenever you experience something unusual like this, or more seizures than usual get straight back to your neurologist or their secretary and ask for advice, especially when pregnant.

Also be in touch with your doctor daily if necessary. your health and your baby's is of prime importance. Don't be afraid to get help. It's your doctors job to keep you as safe as possible.

Hope you are both doing well now.

[pezenas]

There are over 20 AED's and your epileptologist should be trying different tablets in an effort to control your epilepsy. Mine have changed 6 times because previous drugs had unpleasant side effects. As Jules said different drugs affect different people. I'm content with Lamotrigine which keeps me under control most of the time.

[Boating]

Hi

I have had Epilepsy since I was 18 months.i am now 54 Have been controlled since my early 20s. I take three different tablets phenytoin, clonazepam and mysoline. Have managed to hold a job down all these years but the anxiety I get is causing problems at work. My employers do not know I work in the Nhs and have been told to declare it how will i be treated if I do that

[AmyBadd in reply to Boating]

Sorry to hear about your anxiety. Unfortunately, not everyone reacts well when they are confronted with someone who has mental health problems, but they are very common (is it 1 in 4 or 1 in 3 people who have depression or anxiety at some point in their lives?). I think that people are starting to talk more openly about these issues than in the past, and more people are comfortable with them.

My husband has been suffering with depression and anxiety for about 18 months and his boss has been truly awful with him. I was very surprised because he works in HR and they are very pro-active when it comes to equal employment opportunities, etc, and I would have expected them to be very accepting. Again, working in the NHS I would have thought that your bosses (and remember no one else need know) would be very understanding, but like I said, you never know. Personally, if it is causing you problems, I really think you should declare it. If they do not act in an understanding way, there should be someone you can report them to. As an aside, my husband has told lots of his friends about his issues and they have all been wonderful about it.

I hope you get it sorted

[Boating in reply to AmyBadd]

Hi Amy

Wendy to occupational health yesterday and was advised to disclose this to my managers, I know feel a lot better but will not know the outcome just yet

[timsgirl in reply to Boating]

be careful telling NHS I got sacked from them in April due to epilepsy

[haydn74]

everyone reacts differently to certain tablets and I would see the doctor and explain to him. I am 62 and have had epilepsy since the age of 11. Hit and miss for many years, but have been seizure free for 10yrs. I take phenytoin and lamotrogine and they suit me very well. Good luck

[isherwoodjon]

Epilepsy developed about 5 years after a brain operation.

Started on phenytoin but changed to a strongish dose 400mg of Tegretol then Tegretol Retard.

This slows me down quite but being seizure-free is paramount.

Have held a job from 1 969 to retirement. What's more, have driven with DVLA acknowledgement too.

Medication is personal and most probably will not be right the first times.

Address your consultant he's there for you.

John Isherwood

[jules1973]

I am not seizure free and havent been since i had encephalitis i dont drive but i am working its getting harder and harder to keep going once i have had a seizure even though u dont see it i am tired afterwards the older i am getting the harder its becoming

[AmyBadd]

It seems you are not being very well looked after if you are taking medication that is not helping and that is causing you side effects. It took a while to find a medication that worked for me, but I did in the end, unfortunately not everyone can. What I don't understand is what is the point in taking it if it does not help? You are just putting chemicals into your body, and I think you've tried it for long enough to know that it's not going to help. You need to speak to your GP/neurologist/epilepsy nurse about coming off your medication and perhaps trying something new. There will definitely be medications you have not tried before and perhaps your doctors might now have a better idea what will work for your specific diagnosis than they did when you were first diagnosed (for example, I have a kind of epilepsy called Juvenile Myoclonic Epilepsy, and some AEDs are known not to work for this type).

Unfortunately, you can't change what has happened in the past, but you can try to get better now. I wish you the best of luck

[happy48]

Hi

AmyBadd has the right answer suggesting you go to your GP/ neurologist/ epilepsy nurse etc.

Staying on the same medication for a long period can make side effects worse and become toxic(as in my case with one medication). I am still not fully controlled after a period of 54 years but a lot better than I would be. You should be given a review or request one every 12 months.

All the best x