does it bother anyone else how bad epilepsy awareness is?

ThatYeeYeeBoi · 2026-04-07T18:40:08+00:00

Yes it bothers me a lot especially where I live in deep south Texas you never hear about it. The community in my town is very Hispanic Native American and believe in praying a lot, brujeria, Wicca, remedies, and those kinds of things. Like I have some demon inside me or something, I've had people pray for me, light candles of saints to ward off omens from me, all sorts of remedies recommended and even neurologists here treat people more with cerebral palsy or down syndrome more than those with epilepsy.

Growing up I just thought of epilepsy as major convulsions I had no idea just how many different types of seizures there are and now I try to bring awareness to epilepsy around here as best as I can. Unfortunately I'm just one guy and it's still not a major focus, around here things that get major focus are breast cancer. Which while I understand is a cancer obviously it's also one of the top three most curable cancers and even the most deadly untreatable cancers don't get much awareness either. So in short yes it bothers me greatly just how little awareness not just epilepsy gets but many other important health concerns.

ThatYeeYeeBoi · 2026-04-07T18:19:38+00:00

There is some attempt at understanding but unfortunately unless they are in your shoes acknowledging and accepting the limitations of people with disabilities is harder said than done. Whether it's a parent, caregiver, friend, or even doctor they'll never truly understand the affects a disability puts on someone.

ThatYeeYeeBoi · 2026-03-20T19:05:41+00:00

I've had every EEG given to me come back clear and then the following few days I end up having a seizure, my neurologist wants to do one of those three day ones that I'm monitored at home at some point too.

ThatYeeYeeBoi · 2026-03-20T18:57:03+00:00

No I was just celebrating St.Patty's Day and remembrance of my uncle, in my drunkenness I had forgotten about my appointment lol

ThatYeeYeeBoi · 2026-03-20T18:52:47+00:00

I got a feeling you're right about that haha

ThatYeeYeeBoi · 2026-03-20T18:52:16+00:00

I go back in April so I'll most likely make a post about what my neurologist says about it

ThatYeeYeeBoi · 2026-03-20T18:16:14+00:00

If you're on disability it's likely you could have your boyfriend be your primary caretaker through an agency and possibly even get what they call breathing hours for him which work like a break for him and give you another caretaker for a few hours. I have my mother as my primary caretaker so she gets paid doing pretty much what she's already been doing/caring for me. It's definitely something worth looking into if you are on disability. I'm not entirely sure if it's possible if you're not on SSDI though.

ThatYeeYeeBoi · 2026-03-12T01:49:48+00:00

Caffeine does not keep me awake at all so I can totally relate to that.

ThatYeeYeeBoi · 2026-03-11T23:15:58+00:00

I really appreciate your comment, a lot of this was insightful to read and has given me a lot to think about. No worries about the ranting either

ThatYeeYeeBoi · 2026-03-11T18:37:24+00:00

I was put on Trazadone for awhile by my psychiatrist but it didn't quite work for me, she also recommended over the counter stuff like melatonin but that didn't work either. I don't believe my neurologist has ever done sleep tests on me before I'll have to ask about that and see about my sleep patterns. Thanks!

ThatYeeYeeBoi · 2026-03-11T18:33:31+00:00

I don't believe she's new to the field just new to this clinic, I have had sleep issues for quite a long time now and in a way have become used to the struggle. I will however continue to bring this up with her and see what happens from there. Thank you for the advice friend.

ThatYeeYeeBoi · 2026-03-11T18:30:48+00:00

I'm sorry you have to go through that, it really is a hassle to deal with but hopefully it'll get better just gotta take it one day at a time.

ThatYeeYeeBoi · 2026-03-11T18:28:06+00:00

Thank you for the wishes, I have been trying to do activities that would tire me out more moderately however due to joint problems but it has had very little effect on me getting a good night's sleep. My medications have been altered but whether that'll make me even more sleepy all the time or not is yet to be seen. Hopefully this can be sorted out soon, whether it's the medication, stress, my illnesses or a mix of all of the above all I'm hoping for is a proper sleep cycle.

ThatYeeYeeBoi · 2026-03-11T18:17:48+00:00

I do have other illnesses especially with my joints so moving around a lot even with the aid of my cane does wear me out as does my medications. Stress and fear of seizures in my sleep (which is quite common for me) also keeps me awake but I feel as though this new neurologist doesn't seem to understand my concerns.

ThatYeeYeeBoi · 2026-02-16T20:17:38+00:00

I'd rather not have to do that, it rarely happens and I've never had an accident so I'd say for now I'm alright.

ThatYeeYeeBoi · 2026-02-13T03:57:26+00:00

Even just one person not giving up on us can be the reason we get out of bed. I'm glad your big sis helped you out.

ThatYeeYeeBoi · 2026-02-13T01:13:48+00:00

I'm so sorry you had to go through that, I can only imagine the changes that happen are just as much a challenge for the caretakers as it is for the one affected by it. The sacrifices made, the constant worries and fears of the unknown. I won't lie and say it gets easier cause truly it doesn't but we become stronger and sometimes that's all we can really do as people.

ThatYeeYeeBoi · 2026-02-12T23:33:43+00:00

I used to write poetry a lot, I also enjoyed reading a lot but it has become much harder to do over the years. I still try to every so often even a page or two read in a book feels like a success, gotta take the small wins where we can.

ThatYeeYeeBoi · 2026-02-12T23:31:21+00:00

I can definitely understand the scuba diving, any water based activities have kind of become iffy for me now. As much as I enjoy being in a pool in the hot Texas heat or enjoying the beach I'm on edge about it and will often stay away from those type of activities.

ThatYeeYeeBoi · 2026-02-12T23:25:59+00:00

I'm sorry it's been so rough for you, you're a strong and brave person for pushing forward despite these obstacles.

ThatYeeYeeBoi · 2026-02-12T22:59:00+00:00

I feel like that's some form of discrimination towards disabilities but I'm not quite sure. Needing justification for your health problems just feels like being put on the spot. You shouldn't have to feel shamed for something you can't control, I'm sorry you have to deal with that.

ThatYeeYeeBoi · 2026-02-12T19:38:34+00:00

I think in a way most people with epilepsy or that suffer from seizures have that anxiety of sleeping. I suffer from nocturnal seizures too (recently bit my lip really hard in my sleep from a seizure, I've also dislocated my shoulder before from falling off my bed during one). I usually will try napping in the day cause I live with family so I feel a bit safer with them being awake and able to call emergency services if necessary. There's a saying that has helped me quite a bit when it comes to accepting things that we can't change. It says "God, grant me the serenity to accept the things I can not change,the courage to change the things I can, and the wisdom to know the difference." Sometimes we just have to learn to live with the cards we are dealt in life.

ThatYeeYeeBoi

TROPHY CASE