honeymoon effect?

[I_hate_this]

Hi all, new here and kinda struggling at the minute so figured I would ask - has anyone else experienced a “honeymoon effect” with their meds? It appears this is what is happening to me. I don’t know how much longer I can cope with this condition to be honest, it’s taking over my life.

[EpilepsyAction1 Partner Epilepsy Action]

Hi I_hate_this

Sorry to hear you are struggling. Living with epilepsy is most definitely not easy. I hope you hear from others on here as sharing experiences with others can help.

If you don’t, as well as managing the HealthUnlocked community, Epilepsy Action has other ways for you to contact others. These are:

Facebook facebook.com/epilepsyaction

Twitter twitter.com/epilepsyaction

Talk and Support epilepsy.org.uk/talk-and-su...

From our experience, in most case people find it helpful to talk to or contact people who understand what they are experiencing.

Also, we have our befriending service. This service provides one-to-one support with a volunteer befriender either online or on the telephone.

epilepsy.org.uk/support-for...

As you are still having seizures, are you being seen by an epilepsy specialist so they can review your treatment and look at other possible reasons for your seizures to still be happening? They may suggest trying a different epilepsy medicine. If you have tried various types of epilepsy medicines, it may be the specialist could look into other treatment options for you.

epilepsy.org.uk/info/treatm...

epilepsy.org.uk/info/treatm...

If you are not under a specialist, you will need to ask your family doctor to refer you. This would usually be to a neurologist. The ideal would be to someone with a specialist interest in epilepsy, as there are many different neurological conditions, and neurologists tend to specialise in different ones.

If you wish to talk to our helpline team and you live in the UK please do phone our freephone helpline 0808 800 5050.

Our helpline is open Monday to Friday 8.30am until 5.00pm, and Saturday 10.00am until 4.00pm.

Regards

Diane

Helpline Team

[GillyA]

Hi I’m so sorry you are finding this difficult. I only started my epilepsy when I was around 30. I can remember what an awful shock it was and how devastating.

I very much agree with finding the right neurologist and one who if possible will give you long term care. I struggled at first because I move about a lot, including overseas. I now have a specialist in London who has been great about flexing appointments to help manage my complex life.

I feel so much for you. After spending a long period where my seizures were well controlled (about 1 a year). I’ve suddenly had one in December and two in May, all while I was away in Nigeria. It’s all really scary. I’m so worried it’s going to make my career unmanageable and that I’m suddenly going to move into my epilepsy having a major and life changing impact.

What im holding on to is that most epilepsy is manageable, with the right medication it can be controlled and that there may be other options. Also do be open with others if you can’t. I’ve certainly found much more support than you might expect (including from the various bosses who’ve been impacted over the years

Also worth trying to access some psychological support if you can and you think you need it. Many employers will have a confidential employee assistance plan which you can access, perhaps at university if you are there too.

I wish you all the very best.

[Shorehampete]

Hi.

I'm sorry to hear your struggling with the diagnosis of epilepsy. I was diagnosed about 5 years ago when I was 50. Like yourself it was a massive shock and it took me a good few years to get used to the diagnosis. I had some very dark days when I couldn't even get out of bed because I felt so low which is very unusual for me. But please stick with it and follow the advice from people who been through this because it does get easier with time and the right meds. You may have to try different tablets until they find the ones that works for you but it will get easier trust me.

Hope this helps.

[Msrble]

I have also very recently being diagnosed with Epilepsy and placed on medication, and I guess I also feel it's taking over my life. It's a hard thing to deal with.

I have had cancer twice and treatment and surgery both times, but this mentally is on an entire different level.

I have only recently come onto the forum and in a way it's nice butt odd to see other people are also and have struggled and I mean that in a good way, as when I got to see the medical team and people around me, I get really upset at the "what's wrong with you attitude".

All I can do is hope the medical team get the dosage correct. And go from there I guess.

But I agree "I hate this " it's not easy in anyway.