Seize Control - your route to better treatment

[EpilepsyAction1]

Our new campaign, Seize Control, aims to help people whose seizures are poorly controlled. Of the 600,000 people living with epilepsy in the UK, around 288,000 are still experiencing seizures. We estimate that with better treatment 108,000 more people could become seizure free. The campaign supports you to ask for better treatment if your seizures are not controlled.

epilepsy.org.uk/involved/ca...

[sporan]

Hi,

Is it possible or likely a different drug or therapy will help my seizures as they are being caused by a diffuse tumour in the left medial temporal lobe where I have been told even awake surgery would leave me incomplete.

I have unpredictable complex focal seizures at least twice a week and some simple focal seizure symptoms. More recently during break designed by my neuropsycholgist and at night I have been getting uncontrolled mild twitching, mainly right sided, and am unsure if this is related to ther epilepsy. I do have tumour related cognitive deficit, depression, anxiety and stress, all of which obviously has an impact on the epilepsy.

I am currently taking 1300 mg Keppra daily with 300 mg of lamotrigene daily.

Any advice as to what different treatment or therapy I could request from my neurologist would be greatly appreciated.

Incidentally the neurosurgeon I was refered to was not too happy that despite a dosage change in September 14 my neurologist had no plans for a review for 12 months. Is a 12 month review normal after dosage change or should it be sooner and if ao how much sooner. My GP has been supportive and also introduced a further increase which he informed neurologist about but I still have not recieved any follow up appointment from him.

[EpilepsyAction1 Partner Epilepsy Action in reply to sporan]

Hi Sporan

That sound like you’ve had a lot to cope with.

Everyone with epilepsy should get a yearly review, even if they have seizure control. If you don’t have seizure control, you should certainly be seen more regularly. And as your seizures are not under control, the NICE guideline on epilepsy says you should be referred to a team of specialists.

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

As we’re not medically trained, I’m not sure whether there is anything else that you could be offered. But you do need to be able to have that conversation with someone who is an epilepsy specialist.

Hopefully you have checked out whether there are any events related to Epilepsy Action’s Seizure Control campaign near you. epilepsy.org.uk/involved/ca...

And here are the contact details for the Brain Tumour charity, in case that could also be useful.

I really hope this helps to get you treatment where you at least feel that the options have been explored as fully as possible.

Cherry

Advice and Information Team

[sporan in reply to EpilepsyAction1]

Hi Cherry,

Thank you for your response. I have looked for Brain Tumour charity but unfortunately all their centres are awkward for me to get to without being able to drive. As my wife works full time and most sessions are during the working day it is difficult. Even headway locations are difficult for me.

How ever I do use the headway forum a lot and have had some good support and advice from them as well.

Whilst the neurosurgeons team are brilliant at what they do, organising tests, scans, assesments etc. their written comunication is non existant and I am currntly waiting for information from them as the neuropsychologist told me that my neurosurgeon was looking at referring me across to their epilepsy team.

The neurologist I am under closer to home I have lost faith in as the follow ups are never to schedule. The first six month review was at 8 months the second six month revies was at 10 months so at that shedual the twelve month review is likely to be at 18 months!

I concidering asking my GP for a referral to a different neurologist even if it's at a different hospital. Not sure how this would affect my treatment as worry that I might get marked on system as 'trouble maker leave well alone'.

As an aside one of my neighbours is a nurse that used to work on the neurology ward that my neuro covers and told me that nobody on staff like him as he is arrogant and treats all with contemp and as if they are ignorant, something that my own personal experience confirms.

In the mean time I do my best to follow the advice of the neuropsychologist in respect of fatigue management which also helps with the seizures.

One again many thanks for your reply and will follow the links in your response shortly.

Geoff