seizures, getting worst

[Alicat47]

Hi was diagnosed a year ago with generalized chronic tonic seizure, they had been controlled apart from a fractured ankle, and spent 19 weeks of physio, it settled but then after a stressful couple of months with my daughter most of November was one seizure after another despite increase my lamortringe, have a good study teacher, but then 7 days before christmas had two seizures over twenty four hours, ambulance called,hospital have but me on kappa, but both myself and especially my fourteen year old asre feeling gloomy, my daughter feels that the medical service blame her for causing my fits,and not doing enough. I know I have to look at changing my life style, but how to support my daughter is also a concern as not much out there for children who have parents that are epileptic, any advice welcome

Happy christmas and a good new year

[samanthaash1993]

I have secondary generalised tonic clonic seizures. They are controlled by epilim Chrono.

[Alicat47 in reply to samanthaash1993]

I had epilim in the past twice cant tolerate it😧

[samanthaash1993]

do you have meds you can tolerate now?

[Alicat47]

yes lamtrogine, although that not working so on kappa at the moment

[Hidden]

Hi Alicat47,

Sorry to hear you are in distress over your seizures.

I have had epilepsy now for 42 years, and am well controlled after many years of finding the correct medication and correct dosages. I am currently on Carbamazapine and Phenytoin. I believe Keppra can cause behavioral changes but have never been on the drug so cannot give much other advice on it.

Stress is one of the biggest factors for seizures, as well as hormonal imbalances. The more depressed both you and your daughter, the more likely the chance you have of bringing on another seizure. Heat is another big factor, lighting, and many more other triggers. Your daughter at the age of 14 is going through hormonal changes, i.e. puberty and experiencing fear for you... She must be kept calm and the diagnosis and understanding of epilepsy should be fully explained to her for her to help you and not feel she is the cause. Anything can be the cause of your seizures, until further testing is done and they find out more.

Please remain strong and support your daughter also during this time... She naturally doesn't know who to turn to and is frightened of the whole procedure.

Hoping some of the above helps.

Regards,

Les

[Alicat47]

Hi les, I went to the doctor today, and the combination of the two drugs seems to be working, and the new dr at the surgery I'm now at is please, that its settling down, and that the care plan of keeping me safe, which will in turn mean she keeps content, I'm going through the menopause well started early, and yes she is hormonal as well and as you say 14 is an age when they think all parents are embarrassing, but in her case, she lost her father to ill health, and did realise that I had a health condition, which un balanced here we have a young carers body here in Hertfordshire, and they accessed some help, its sad that there isn't much info on children whose parents have epilepsy maybe some from the epliespy action could consider it. :0(

I have been epileptic on and off since I was 5 although always absence, mine now tend to be just as I'm falling asleep, or in my sleep, thank you for your support

[EpilepsyAction1 Partner Epilepsy Action]

Hi Alicat47

It sounds like things have been tough for you and your daughter. We agree, there isn’t enough information for children whose parents have epilepsy. But we have recently updated our information.

epilepsy.org.uk/info/parent...

The above link may however be too young for your daughter. So I wonder if your daughter would find the young people section of our website helpful. The information is aimed at young people with epilepsy but I feel it could still help you daughter understand epilepsy and living with the condition. epilepsy.org.uk/info/young-...

We do events and meetings in many parts of the UK. To see if there is anything near to you please use this link. You may wish to keep checking as we add new events throughout the year. epilepsy.org.uk/near-me?fro...

It’s good that you are trying to help your epilepsy with some life changes. Many people find that taking care of their wellbeing can help them to have as few seizures as possible. This can simply mean taking some steps to looking after your body and mind. We have a wellbeing section on our website that covers having a healthy diet, getting quality sleep, being active, and it includes mindfulness techniques to manage stress. epilepsy.org.uk/info/wellbeing.

We have an active presence on social media. This can be a good way to make contact with other in a similar situation. This could benefit both you and your daughter. epilepsy.org.uk/info/suppor...

Finally, if it will help, you and your daughter can always talk to our helpline team. Please feel free to contact us either by email [e-mail] or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

I hope all works out OK for you both.

Regards

Diane Wallace

Advice and Information Team