newly diagnosed.

[debradonut]

Hi,
My daughter who is 27 has recently been diagnosed with epilepsy (Feb 2014). We do not know what has caused this although she has had the eeg, mri scan etc . She has been prescribed with kepra, it is difficult to say if this has helped. She is having a seizure around the time of her period which leads us to think it could be somehow hormonal, but this has not been confirmed. She is really frustrated at the moment and can fly off the handle at the slightest thing which is so unlike her. She is so sorry afterwards and says she wished she hadn't woken up this morning. Unfortunately her GP has been no support, they have denied appointments have been made when she has visited the surgery to discuss her concerns, they provide her repeat prescription and that's it. This is the first time I have had any contact with epilepsy and I do not know what to do for her. We are waiting for another appointment with her neurologist but we do not know how long this will be. She is on the sick from work at the moment and this is adding to her frustration but she says she cant trust herself to be around people in case she loses control and that without the worry of the next seizure coming on. Can you give any advise on where we go from here.

Many thanks

debb

[Anthony Linklater]

I am sorry to hear about the tough time you daughter is having and that her GP has been unsupportive.

Firstly, it is quite common for women with epilepsy to find that their seizures can be affected by their menstrual cycle with seizures more likely to occur at a particular time in their cycle. For some women, it can be helpful to take an additional medication around this time in order to try to prevent these seizures although this is not always effective.

You also mentioned that your daughter is a bit short tempered. This may be a reaction to the frustration she feels with her situation and this would be very understandable as being diagnosed with epilepsy can be life changing. It can have a negative impact on mood and the unpredictability of not knowing when the next seizure is going to occur may increase anxiety levels. It may help for her to have someone to discuss her feelings with and the GP should be able to assess her mood and possibly set up some counselling as a first step to addressing this. It may also help to check out the Epilepsy Society ‘Just Diagnosed’ pack which may be helpful too. This can be ordered from here: http://epilepsysociety.org.uk/just-diagnosed

Your daughter’s short temper could also be an adverse effect of the Keppra (Levetiracetam) and this is sometimes seen with this medication. As the Keppra is also not managing to control her seizures adequately, I would suggest making contact with your daughter’s neurology/epilepsy service to review her treatment. If it is difficult to get an early appointment with the neurologist, they should be able to talk to your daughter by telephone. If there is an epilepsy nurse attached to the service, they can be an excellent source of advice and support in this situation and should be more accessible. However, your daughter should not make any changes to her medication without the advice of the neurology service that knows her.

I hope the situation improves soon.

Anthony

[Dr Hannah Cock]

Dear Debb,
just to say I completely endorse the advice Anthony has given - good luck
Hannah

[Andrew Kelso]

Dear Debb

You sound as if you're both having a really hard time at the moment - I'm very sorry to hear that.

Don't worry too much about not being able to find a cause for your daughter's epilepsy - around 50% of patients have normal test results. Funnily, some patients are more worried by normal test results than abnormal ones - they're concerned that "something's been missed". This is perfectly normal.

Also consider phoning the Epilepsy Society helpline (you can find the number on www.epilepsysociety.org.uk) - they'll be more than happy to have a chat about things and give you what advice they can.

Finally, consider going to an Epilepsy Action support group if there is one local to you/your daughter. They can be really useful, and they're for relatives and carers as well as patients, so you could go along on your own if you wanted. Again, find details of these on www.epilepsy.org.uk

Good luck, and best wishes

Andrew