Help.

[Shorehampete]

HiI was diagnosed with sleep epilepsy around 5 years ago and since then my neurologist has tried me on 5 different medications and unfortunately none of them have really helped. I'm presently on 3 different tablets which means I'm taking 8 tablets a day and while this has reduced the severity of the seizures they are still happening regularly. The worst part is dealing with the side effects and whilst most of them are bearable the worst one is the extreme fatigue. It's got to the point now where I'm seriously thinking of coming of the tablets completely as my quality of life is not worth taking all these tablets for at the moment. Obviously I will discuss this with the specialist next time I see her but I was wondering if anybody has any suggestions of a more natural alternative I can try which may help me.

Thanks for reading and and replies.

Shoreham Pete

[boxgrove]

Hello , please don't stop taking your medication ! It really is trial and error. I've tried 9 or 10 different tablets and they finally got it down to two tablets twice a day. Suddenly after about 7 years I've just had another one. This one was during the day whereas all off my others have been whilst I'm asleep, whether it be day or night. The brain is very hard to sort out , I'd be amazed if they happened to stop for the rest of my life. I've even had brain surgery to cut down on the focal seizures.

[Shorehampete in reply to boxgrove]

Hi Boxgrove. Thanks for your reply. Sorry to hear of your on going struggle with this horrible condition. It's tough to live with.

[EpilepsyAction1 Partner Epilepsy Action]

Hi there

It sounds like things are really difficult for you at the moment. It can’t be easy dealing with the side effects you’re experiencing.

It’s good to hear that you are going to discuss this in more detail with your specialist. In the meantime, it's important keep taking your medication as prescribed.

If you’ve tried 2 or more medicines and you’re still having seizures, your specialist should refer you to a specialist epilepsy centre, if they haven't already. The centre should review your epilepsy and treatment to try to get you better seizure control.

They can also talk to you about other treatment options that may be available to you. epilepsy.org.uk/info/treatment

We also have some information about complementary treatments, which you may find helpful. epilepsy.org.uk/info/treatm...

Kind regards

Julie

Helpline Team  

[Shorehampete in reply to EpilepsyAction1]

Hi JulieThanks for your reply and recommendations. I will definitely ask my epilepsy nurse about this when I next speak to her.

I think I was feeling a bit sorry for myself last week when I wrote this email but after receiving some lovely replies and helpful comments I'm feeling a bit more positive.

Thanks again Shoreham Pete

[EpilepsyAction1 Partner Epilepsy Action in reply to Shorehampete]

You're very welcome. It's understandable that you are feeling low, but it's good to hear that you are going to arrange to speak to your epilepsy nurse.

You can call always call our Helpline too on freephone 0808 800 5050. It's open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm.

Regards

Julie

Helpline Team