Epilepsy support

HWilkinson

Over the last 6 months, my seizures have become more regular. This has caused me to have increased stress levels. Does anyone have epilepsy who can relate to my issue?

thespiceman

Hello @HWilkinson   Pleased to meet you welcome.

Thank you for joining and sharing.

Sorry to hear this.

I am one of the team of community champions who guide advise and help new members.

There will be members of our community who can identify. What you are experiencing. They might be in touch.

Please can I ask have you spoken to your Doctor?  Is your Doctor aware of your stress levels.?

I would advise speak to your GP..

Please if we can help with anything. Please contact the forum happy to be help and be supportive. Either a member of our team or a member of our community.

Please take care.

@thespiceman

HWilkinson

I saw my consultant in May, he says "These things happen!" Trouble is he is like The Scarlett Pimpernel! You seek him here you seek him there. Hes never around. He is doing blood tests. I dobt really feel supported by him away from my 6 monthly appointments. This causes my stress levels to increase . It's a vicious circle 

thespiceman

Hello @HWilkinson   Thank you for reply. Sorry to hear this.

You mentioned your consultant.  I would have thought if your experiencing problems with your condition.

Go back to the Doctors.

I also found on line the Epilepsy Organisation they may advise you give some more information.

https://www.epilepsy.org.uk.

Helpline 0800 800 5050 

Monday to Thursday 8.30 am to 8pm.
Friday 8.30am to 4.30pm.
Saturday 10.00am to 4pm.

Hopes that helps.

Please if I can help with anything else please get in touch.

Please take care.

@thespiceman

HWilkinson

Doc won't help! He will just refer me to my consultant at The National Hospital.  When I see him in 2 weeks I am going to request better communication. At the end of the day , I'm not inviting him for coffee, I'm asking for medical assistance. 

Adrian_Scope

Hi @HWilkinson, I completely understand your frustration with the terrible communication. If you think it’s worth it, you might want to try PALS - https://www.nhs.uk/common-health-questions/nhs-services-and-treatments/what-is-pals-patient-advice-and-liaison-service/

They’re really good at getting things back on track.

Let us know how you get on!

Adrian

HWilkinson

Hi, I am seeing my consultant in 2 weeks, so we will discuss communication then! I'll definitely let you know

Chloe_Alumni

I hope your appointment goes okay @HWilkinson and please do keep us updated.

Adrian_Scope

Good to hear @HWilkinson. Hope it goes well.

HWilkinson

I have had a very tough week! 3 seizures in 3 days! My doc really has to start helping me when I see him next week 

Chloe_Alumni

Hi @HWilkinson, I'm sorry to hear this! Is this particularly unusual for you? Do you have an epilepsy nurse you could contact to inform them about the increase?

HWilkinson

Hi Chloe, thanks for the support, I informed my neurologist, and he had me have blood tests.  I don't have a designated nurse! Every 3 weeks is unusual, however every 6 weeks is normal! I want to know why the increase 

SaraC_Scope

Hi @HWilkinson

Sorry to hear you are going through a tough period.  I have Epilepsy and fortunately have been seizure free for a while, but for 30 years, I experienced regular seizures and didn't know when they would occur.  I was in the same situation as yourself and had little support apart from a twice yearly visit to the hospital.
Stress and anxiety can increase the seizures but has anything else happened like sleepless nights or family worries?

I now volunteer with Epilepsy Action and they are a great charity if you need some support, they can empathise with what you are experiencing.

Here if you have any concerns

Regards

Sara

Paul7210

Hi @HWilkinson ,
                   I'm sorry too you're having a tough time at the moment. My wifes epilepsy is refractory also, she was under The Epilepsy Society in Buckinghamshire and The National Hospital for Neurology & Neurosurgery in London for a number of years for surgery including for Vagal Nerve Stimulation which didn't help. She's been battling away for many years but in our case we've reached the end of the road with regards treatments, however we have a care package in place to make life as easy as possible and this also allows me to keep working. I wish you all the best and hopefully you soon return to your normal seizure pattern and one day they find that magic drug to control you.
 Best wishes
Paul

Paul7210

I'm really sorry to hear your story @woodbine , my wife has had uncontrolled epilepsy since the age of 7 and at 47 seizures are still a daily occurrence. I'm so glad you're not on your own your wife sounds wonderful and caring. My mother in law used to care for my wife but 15 years ago she passed and I had to ask for support, this was via a care needs assessment from Adult Social Care and to be honest we've been extremely lucky. Lisa has tried all the different drugs, some worse than others and like you she's felt depressed and suicidal at times, some neuros are indeed rude but since we got reffered to The Walton Centre in Liverpool they have been brilliant. Let off steam anytime @woodbine you must have been very young when you had your stroke? my Lisa's epilepsy started for no reason and over the years it has progressed.
Best Wishes
Paul

HWilkinson

I saw my neurologist in September,  I am on a new drug called Topiramate! Making me drowsy currently,  I am going to pursue with it however. 

Chloe_Alumni

Hi @HWilkinson, I hope the drowsiness doesn't persist!

mac1976

Hi I’ve been epileptic for 30 years. I can completely relate to you. I have fits that are not probably controlled Also have fits at night where I regularly lose bladder control. Its the not knowing when it’s going to happen. The is also the injury side of it. I’ve come round plenty of times with injury 2 years ago I was in hospital for a week due to a bad head bang. My forehead had doubled in side with swelling. I had 2 black eyes. I was in a shop. I went facedown on a concrete floor.