I’m very new to this whole seizure thing, I was officially diagnosed with Non-Epileptic Seizures on June 2nd of this year but my Neurologist recommended I find some Epilepsy groups to join.
The main thing I was hoping to get out of this post is some help with adjusting my lifestyle to my seizures. I would say about 70% of the time they are gran-mal style, while 30% is Clonic and Absence. I would say I have about 4 seizures a week, but they are starting to slow down in frequency.
Any tips or advice is appreciated and I am grateful for any help I can get. Thank you in advance.
Talking to others in a similar situation can help. So I hope you hear from others in this community soon.
If you haven’t already you may find some of the following services helpful for more information and support on living with non-epileptic seizures:
Website: non-epileptic attack disorder.org.uk
This website has been set up by people with non-epileptic attack disorder (NEAD) to provide information and support for those with NEAD/dissociative seizures and their family and friends. The medical information has been checked and approved by a medical advisor, Professor Markus Reuber, who specialises in non-epileptic attack disorder/dissociative seizures. It has a wide range of very useful information.
Website: nonepilepticattacks.info
As well as a wide range of information, the website includes a leaflet which you can download. You are also invited to send in your account of life with NEAD.
Website: neurosymptoms.org
Website: codestrial.org/dissociative-seizures
Website: fndaction.org.uk. The aim of this website is to raise awareness of functional neurological disorder (FND) and dissociative seizures
There are also a number of groups for people with non-epileptic seizures on Facebook
Hi 1st don't be afraid to tell people, it isn't anything to be ashamed about, I used to ware it as a badge of pride, 2nd if you get some warning, keep yourself safe.
3rd don't worry about it, with me worrying used to land me in hospital.
Thank you very much! I try my best to explain what’s going on to my close friends and family but it’s tough to do without telling an hour long story. The tips will help me though!
Have you found anything to help you with the non epileptic seizures, this is what my neuro believes I may have vs epilepsy.
37yrs with E. sprang from nowhere when I was 12. A lot to adjust to. It’s an evolving journey. For me fresh air and outdoor activities counter a lot of the symtoms. Good sleep hygiene is critically important. Steer clear of the booze or accept the consequences of it lowering your seizure threshold. Your choice. I partied in my 20’s a lot but was always juggling plus & minuses due to E and the meds.
Keep strong. I found a good strength training regime gives me good posture and stature. This helps counter my own version of E.
Aim for 2mins plank, 50 press-up, 5k run, 1mile swim, 60miles bike ride, 25 pull ups, 5 min daily stretch. Mix this up but these are real targets for an average to fit man. Eat good food. Keep a good mix of mates and keep sexually healthy and active. These are contribute positively to treating your E or PNES holistically alongside any meds.
It’s scary as hell and we know it. In the end you will win and you will be amazingly strong as a consequence.
Hi what are non epileptic seizures? What reason have they given for being non epileptic? How do they know its not epilepsy when eeg don't always give seizure readings unless your having one at the time sorry just very interested in this thanks 😬
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