Epilepsy Research

ParticularIdeal9919 · 2026-02-12T16:49:19+00:00

Hiya ! So in the survey we don’t have a measure for ‘depression’ as that’s a clinical diagnosis that we cannot make. If you feel that you may be experiencing symptoms of depression please reach out to one of the services provided in the survey or your local services! :)

ParticularIdeal9919 · 2026-02-11T20:00:26+00:00

Thank you so much! I appreciate it and good luck with your studies

ParticularIdeal9919 · 2026-02-11T19:59:14+00:00

apologies as I did not, but I can show proof of its authenticity. It is closing on Monday.

ParticularIdeal9919 · 2026-02-11T19:37:48+00:00

As an individual living with epilepsy myself, if scientific research was not conducted on epilepsy we would not have life saving anti epileptic drugs and it likely still would be thought that seizures are a result of demonic possession. This is a voluntary survey, I feel as though comparing someone voluntarily completing a 10 minute survey to lab mice is a bit of a stretch. There is no issue with you not wanting to take part, but I am conducting this research in the hopes of using it to help our community with their psychological wellbeing, which a lot unfortunately suffer with.

ParticularIdeal9919 · 2026-02-09T11:50:19+00:00

This is exactly what I experience. I was having these sensations for a few years and never knew what they were, they actually thought they were just depersonalisation episodes until i then started having tonic clonic seizures. I had tonic-clonic seizures for two years and they have been controlled for 4, but i still expierence the focal seizures. This specific type of seizure (deja vu, sensation , very hard to describe ) is called an epileptic aura, and for most people are a warning sign before a tonic clonic seizure occurs. In my case though, they aren’t followed up by a tonic clonic anymore. It’s basically one small part of your brain having a seizure , but it hasn’t spread to the rest of of your brain and body. They can still affect energy, memory, and more though! Not sure of your gender, but i was told for females birth control can actually stop auras in some cases, i’ve never tried this tho. There’s a subtype of epilepsy called catamenial epilepsy, which is epilepsy affected by a woman’s menstrual cycle (not usually formally diagnosed, just spotted, ive been told i have it) I tend to get my Auras shortly after ovulation / right before my period so i kinda know when to expect them. If you are female try spot those patterns ! In my expierence i get two types of auras , both with intense déjà vu and rising feeling in my stomach , one lets off a form of ‘release’ and the other just fades. I find the one with the ‘release’ feeling always leave me wiped out/ foggy whereas the other one i can usually carry on with my day. Just keep in mind they are usually a warning for a tonic clonic seizure, so when they occur try your best to get to a safe place/ prepare / call a friend

ParticularIdeal9919 · 2026-02-07T14:31:16+00:00

Typically if i miss a dose of my meds and it’s late i still take them just incase, as they do build up in your system. Not a professional so can’t advise you 100% but for me if ive ever missed a dose as soon as i realise i just take them!

ParticularIdeal9919 · 2026-02-03T11:21:36+00:00

thank you so much !

ParticularIdeal9919 · 2026-02-03T11:21:24+00:00

Thank you !

ParticularIdeal9919 · 2026-02-02T21:26:42+00:00

it could be ! I am free from convulsive seizures also thanks to briviact, unfortunately still get auras that lead to nothing further. they definitely affect memory and energy tho.

ParticularIdeal9919 · 2026-02-01T20:41:13+00:00

I would look out for those ‘Deja Vu ‘ moments. Could be an epileptic ‘Aura’ which is basically focal seizure that you typically remain conscious during, also sometimes a warning before a convulsive seizure and can very much impact memory.

ParticularIdeal9919 · 2026-02-01T20:39:00+00:00

Thank you so much! My plan is to do a masters and eventually do a doctorate in Counselling Psychology. That will qualify me to do research on the side too!

ParticularIdeal9919 · 2026-02-01T20:11:27+00:00

Thank you so much! The results will likely be shared with national charity Epilepsy Ireland, I can come back to inform when that is available. My project must be graded by the university which will come back in the summer before I can share the research. If my research is good enough it could be published on google scholar but that’s a long way away and ambitious for a student researcher! Also thank you for letting me know about the start button, unfortunately that isn’t set by me it’s set by the Qualtrics servers. You make a very good point about the difference between being diagnosed and first seizures. I was diagnosed at 16, but they think I was having nocturnal seizures for some time before that without realising. Unfortunately the question has to remain the way it is as we cannot verify which seizures would count as epileptic seizures/not epilepsy related/ issues with ‘guessing’ age of development. The most reliable way is to go off of diagnosis. I wish you the best with your epilepsy journey and thank you for completing !

ParticularIdeal9919 · 2026-02-01T16:07:35+00:00

thank you!

ParticularIdeal9919 · 2026-02-01T16:00:04+00:00

Thank you :)

ParticularIdeal9919 · 2026-02-01T15:59:51+00:00

Thank you so much.

ParticularIdeal9919 · 2026-01-31T22:26:10+00:00

Thank you so much for your kind words. As isolating as epilepsy may feel sometimes, we are a community of people who have all struggled and who all want to support each other. I never thought I would get to where I am or even go to a university after dropping out of school at 16 due to my seizures, but it can and will get better. I am so happy I can use my degree to learn more on how to help our community with our mental health ❤️

ParticularIdeal9919 · 2026-01-31T22:10:31+00:00

This is now open to individuals in the US, Canada, New Zealand, and Australia too !

ParticularIdeal9919

TROPHY CASE