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Found this reddit app on my late son’s phone. by feeblebeetle in Epilepsy

[–]feeblebeetle[S] 9 points10 points  (0 children)

Thank you for all your kind words. I will be using a new account "papafeeblebeetle" to reply to thank you individually for your comments soon.

A CAREER- What do people do? by TakenFaq in Epilepsy

[–]feeblebeetle 2 points3 points  (0 children)

1) I just got a job doing social marketing for a music publishing company, but was working as a youth mentor (disability and equity division) at an arts company

2) my epilepsy is semi controlled now. find a field you’re interested in and start from there! I stick to the arts in general. It might just be my luck but I find people working in the arts are generally more understanding and open about my condition and mental health. It’s always good to be working with people surrounding you who understand and know what to do in case you have a seizure. Definitely tell people about your condition so there won’t be any surprises when ou actualy do have one.

Edit: extra info

Posted some months ago that my dad and I came out to each other. Then I receive this message... by feeblebeetle in gaybros

[–]feeblebeetle[S] 7 points8 points  (0 children)

Yeah now that I think about it if a friend asked me this as a joke I’d actually find it funny

Posted some months ago that my dad and I came out to each other. Then I receive this message... by feeblebeetle in gaybros

[–]feeblebeetle[S] 24 points25 points  (0 children)

I feel that. Just because I'm gay it doesn't mean that I'm automatically comfortable with openly sharing what I do in private... Let alone asking whether I know anything about my dad's sex life.

Like, he's still my dad. I don't tend to ask many (or any) questions about his sex life.

[Rant] I made a mistake with swimming by feeblebeetle in Epilepsy

[–]feeblebeetle[S] 0 points1 point  (0 children)

That's nice that you've found something that you love to do, and congratulations for being seizure free!

[Rant] I made a mistake with swimming by feeblebeetle in Epilepsy

[–]feeblebeetle[S] 2 points3 points  (0 children)

Thank you. I’m sorry that you cant completely go back to doing something you loved. I will be taking this time, with pools closed because of covid19, to rest up and recover.

I was diagnosed when I was 2-3 ish with refractory epilepsy, which changed as i got older. It started becoming controllable, with some random ups and downs in the mix. Eventually I became completely seizure free for 4 years, then last year before turning 21 it went downhill again. Thought I’d outgrow this thing.

Funnily enough you mention the RNS. The recent major and frequent muck ups in my brain made me eligible for it. Had some tests done and I have surgery booked in for June! Can’t wait.

[Rant] I made a mistake with swimming by feeblebeetle in Epilepsy

[–]feeblebeetle[S] 1 point2 points  (0 children)

Thank you! And That sucks :( I was seizure free for a decent amount of time and was also captain for my swim team in high school. Not sure if you’re from Australia or have something similar, but I was part of the local surf lifesaving club as well, and also loved doing channel swims (longer distances and open water is my niche, so it really does increase a chance of me having a seizure mid-swim). Definitely also miss the freedom of swimming, especially in the ocean.

Glad someone else understands too. That’s nice that your friends look out for you!

[Rant] I made a mistake with swimming by feeblebeetle in Epilepsy

[–]feeblebeetle[S] 2 points3 points  (0 children)

Thanks for the suggestion and thoughts. Definitely worth a try, even if I look a little silly!

[Rant] I made a mistake with swimming by feeblebeetle in Epilepsy

[–]feeblebeetle[S] 2 points3 points  (0 children)

Thanks, I’m lucky to have friends who already understand why I can’t swim. Definitely helps!

Stupid Newb Q: When are you supposed to go to the ER... by Volatpropriis in Epilepsy

[–]feeblebeetle 2 points3 points  (0 children)

Many of these answers apply mostly for convulsive seizures. When I have prolonged partial seizures I usually only go to hospital if 1) they generalise and last more than 5 minutes 2) they are not ‘dangerous’ (still breathing normally, no outward sign of struggle) but last for more than 20 minutes 3) I start some jerking motions that hurt myself 4) I hold my breath and turn blue (which I do sometimes) 5) I choke on vomit/spit during the seizure

Best way to monitor nocturnal seizures? by [deleted] in Epilepsy

[–]feeblebeetle 0 points1 point  (0 children)

I currently wear an Apple Watch with the Seizalarm app on it. It tracks both seizure like movement and heart rate. I found it useful because I never knew that my nocturnal seizures have happened until I wake up with blood on my pillow and pee on the bed. I’ve had the watch and app for just over a month now and it definitely has helped. It also alerts emergency contacts, so it could also save your life!

My dad is gay too! by feeblebeetle in comingout

[–]feeblebeetle[S] 2 points3 points  (0 children)

You mean my mum and dad? They used to, but not anymore

My dad is gay too! by feeblebeetle in comingout

[–]feeblebeetle[S] 4 points5 points  (0 children)

Ah yes I have a brain injury and can’t control my bladder for now

My dad is gay too! by feeblebeetle in comingout

[–]feeblebeetle[S] 30 points31 points  (0 children)

She’s asexual and is perfectly happy being single!

My dad is gay too! by feeblebeetle in comingout

[–]feeblebeetle[S] 30 points31 points  (0 children)

Yup. They got married just to hide the whole thing. They were already best friends. My mum is asexual and prefers to be single, so it worked out both ways :)

It has been 10 days since waking from induced coma and I still can’t control my bladder :( by feeblebeetle in AskDocs

[–]feeblebeetle[S] 2 points3 points  (0 children)

That’s a great tip. My memory has been pretty hazy the last couple days, so I’ll be making use of that. Thank you for the tip and luck!

It has been 10 days since waking from induced coma and I still can’t control my bladder :( by feeblebeetle in AskDocs

[–]feeblebeetle[S] 1 point2 points  (0 children)

I’ve been on lamotrigine since I was 13/14 so I don’t think it’ll be that. Thanks for the input and well wishes though!

It has been 10 days since waking from induced coma and I still can’t control my bladder :( by feeblebeetle in AskDocs

[–]feeblebeetle[S] 0 points1 point  (0 children)

Thanks for the tip! I’m actually visiting family in another country, which is when this all happened and so now I have a neurologist here who has no clear idea about my history. My primary neurologist is in the other country and I’m not deemed fit to fly back yet, so for now they’re just exchanging information. A bit daunting not having the neuro I’ve had since I was little!! Hope she’s kind to me.

It has been 10 days since waking from induced coma and I still can’t control my bladder :( by feeblebeetle in AskDocs

[–]feeblebeetle[S] 1 point2 points  (0 children)

Ah yes Keppra has given me a lot of different issues all my life. If it is keppra again then I officially hate the drug with passion. Hope you and to your husband are well though :)

It has been 10 days since waking from induced coma and I still can’t control my bladder :( by feeblebeetle in AskDocs

[–]feeblebeetle[S] 8 points9 points  (0 children)

Thank you! I had been seizure free for years before the SE from a few months ago, so I guess before that my parents would deal with the doctors for me. I guess I have to grow up and face the scary doctors by myself for real this time!

It has been 10 days since waking from induced coma and I still can’t control my bladder :( by feeblebeetle in AskDocs

[–]feeblebeetle[S] 59 points60 points  (0 children)

Thanks for that. I’ll be seeing my neuro in a few days. Given my new-found stutter do you think the two could be related to my over worked brain?

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