Double seizure, JME epilepsy, in Jan 2018, irreparable brain damage, one more seizure probably my last!

[Adlon57]

My brain seems to work faster than normal, find it very hard to get to sleep, is it due to damage! Am living on my own, but try to get to sleep, try about midnight, but whole body system far too alert, just pure fatigue, exhaustion eventually just drop off about 3-4am! Am single retired and live on my own, but routine getting up about noon, just not healthy? Do not like taking medication, have HPT, pain killers now immune to! Have diet but now seem to like, healthy looking now, probably off diabetes 2 in a couple of weeks, weight best in seven years! but want normal sleeping pattern, even tv not worth staying up for! Had epilepsy since 1970, 400+ seizures, am aged 67.

[EpilepsyAction1 Partner Epilepsy Action]

I hope you hear from others on this platform, as sharing information and experiences can be a good idea.

Can I just check you also know about our other services?

We have lots of information on our website, including information on epilepsy and sleep: epilepsy.org.uk/living/health/fatigue-and-tiredness

It may also be a good idea to speak to your GP about your sleep issues.

We have our Talk and Support groups (epilepsy.org.uk/support-for-you/talk-and-support-virtual-groups) and befriending service (epilepsy.org.uk/support-for-you/epilepsy-befriending).

We also have a membership offer which is designed to help people stay up-to-date with all the latest epilepsy news, views and research: epilepsy.org.uk/involved/join

Finally if you think it may be helpful to speak to one of our advisers in more detail you can contact us by live chat or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm: epilepsy.org.uk/support-for-you/the-epilepsy-action-helpline

Regards

Jess

Epilepsy Action Helpline Team

[yogastrength]

Hi Adlon, I am 65 this year and have had epilepsy for many years. 2 years ago I was diagnosed with ADHD (it seems that sometimes the 2 go together) My brain would not shut off ever, I thought it was the same for everybody, but many people have told me that they have a quiet brain, I did not know what that was. Sleep was an ongoing problem, I never had a good nights sleep

I went to a Nuffield hospital, private to get diagnosed by a ADHD Specialist and am on meds for ADHD now and.....my brain is quieter! I sleep like a log, 9.30 to 6am. I cannot tell you how the meds have changed my life. I am not suggesting you have ADHD but just telling my story. I would wake up numerous times in the night and my brain would be having conversations, answering itself and was never at peace. I have at least 1 seizure a month, sometimes 2, meds for that do not seem to work anymore (haven't for 4-5 years) but sleeping now and knowing why I was /felt different always has changed my life. Better late than never.

I used to take Amitriptyline 50mgs, for my arthritis and that knocked me out all night but was woozy all day so stopped that

I wish you all the luck in the world, I hope you find a way to sleep better, epilepsy is an ongoing nightmare of it's own but....could be worse!

Warm wishes, Cherry

[Adlon57 in reply to yogastrength]

Hi Cherry it is worse I have irreparable brain damage, double seizure in Jan 2018, next seizure probably my last, my medication Briviact and Vimpat seem to work, my neurologist agreed can't really do more for me, been through most of them, although never diagnosed ADHD taken for granted I have it, always a bad sleeper, but high IQ, have osteoarthritis but am retired so am able to go to bed late and wake up late, my laptop my only real companion. Try to stay on as small amount of medication as possible, never really any faith in medication as ALWAYS suffered from reactions or side effects from them over the years, turmeric for brain injury and vit d supplement pills for osteoporosis exceptions🤞

[Adlon57]

Dear Cherry as you can gather I have ADHD, what procedure did you go for that? Is there any natural health measures recommended, I am taking some medications for other conditions, and have recently honed down a diet which seems to help me generally from my diabetes 2 episode? My High pain threshold means my brain is sending me back wrong 🥴 signals, which does not help🙄 thus bad reactions from new medications! I have recently started up on my old exercise machine, not too much, as I smashed my rib cage, having a seizure in 2017, but do you think 'gentle' exercise would be of some benefit? My doctors, specialists have put me on a six week blood tests every six weeks, only!

[yogastrength]

Hi Adlon, I feel for you, but I'm glad your epilepsy meds are working. I take Briviact and a new one called Perampanel which they have to keep upping. I would recommend gentle exercise, I try and do 4.500 steps a day (my watch calculates for me) starting with a leisurely dog walk first thing in the morning. I have been put on Concerta XL for ADHD, 28mgs daily and it works. I still have conversations in my head (not at night) but they don't argue with themselves and I know it's just ADHD.

I have read that a Keto diet helps with epilepsy, but I don't like meat that much! I love to cook to and Keto would be so boring. I accept what I have to be fair, I had been losing 3 days a month due to epilepsy but the seizures are milder now and really only affect me for a day, apart from losing my taste for a few days.

Your Laptop is your friend and it can lead you down so many rabbit holes, I can easily immerse myself in mine for most of the day if I am not careful!

I really wish you well Adlon, (unusual name) Take it easy and do what you feel is good for you, life is so short.

Warm wishes, Cherry

[Adlon57 in reply to yogastrength]

Am used to epilepsy medication, been through most of them now, will not get cured of it, past it! Actually feeling fitter now, near my target weight, but it was always stress and anxiety that set the seizures off, always when I got up, but now retired ideally like to move from the area I have always lived in, I used to be a genealogist/historical researcher, thus the laptop/worktop vein! Love to move by the sea, but I can dream🤗

I have been registered disabled since leaving school aged 16, always part time jobs, then started night time education, degree, my own business....

I sorted out my own diet, after diabetes 2, then supposed PC treatment, lost near 2 half stone, but feeling good, the jury is still out? did I have PC in the first place, medical authorities certainly keeping low profile about that🙄 although the PC hormone injections reactions, life threatening conditions to my rib cage [osteoporosis ]🙄

luvely day outside going to enjoy it🌞😎

Shaun

[yogastrength]

Well done with the weight loss, amazing! Stress is top of my list for causing seizure.

Was born in Eastbourne and learned to swim in the sea, can highly recommend it. Moved to Suffolk from London 3 years ago, life is sweeter, slower and kinder.

Enjoy the sunshine 😉 Cherry