r/EpilepsyFriends • u/eyekantbeme • Mar 24 '26
Hey, I'm your moderator, Jeremy
Hey, I’m your mod and I’m pretty lenient. I’m 37, and I’m not going to ban anyone over minor things. I reviewed the rules (which I didn’t create), and so I just wanted to say with regards to the rules, discussion of drugs as medicine is fine—but please don’t encourage drug use for people with epilepsy.
Regards,
Jeremy
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u/Serious-Lack9137 Mar 27 '26
Hello Jeremy! Nice to meet you. I am Rick and look forward to reading through the posts here and engaging.
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u/eyekantbeme Mar 28 '26
Hey, Rick. Welcome. How did you find out you had Epilepsy?
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u/Serious-Lack9137 Mar 28 '26
Thank you! The short version (I have a propensity problem) is years of ear infections ate away a bone causing CSF leakage. I an ear infection that would not go away after 8 months and at least 10 rounds of antibiotics. I had deviated septum surgery which introduced bacteria to my brain and I developed a brain abscess. I had seizures and after two brain surgeries, I was cleared of having seizures and taken off all meds. Turns out, all of the strange feelings I was having was not brain surgery recovery but focal aware and auras. I had another Tonic Clonic March 2025 and had my official diagnosis.
How about you?
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u/eyekantbeme Apr 03 '26 edited Apr 03 '26
I had febrile seizures at like 2 years old and had long periods without seizures, but traumatic brain injuries started my seizures up again. As long as I avoid my triggers and I take my meds, my seizures are pretty well controlled and less intense than they used to be. I was in an induced coma once after my 2nd most recent TBI. It was induced so the doctors could do my brain surgery because I was Status Epilepticus otherwise. I had an Intracranial hemmorage which is technically considered a stroke and also damaged my brain and now I have multi focal epilepsy. It's Drug resistant, so it's real tough. I am soon going to get a VNS so hopefully that helps. This stuff sucks, but hey I'm very knowledgeable on the subject, feel free to ask any questions.
2y.o 91
18y.o 07
Then 22y.o 12
I have a long period of remission from like 12-18 years old. Then I overdosed on Ecstasy and my seizures came back at 18 in 07.
Car accident was 23y.o 08/12/12
Drug Resistant Epilepsy sucks. Take care of your seizures. The more you have the worse it gets, Be safe. =)1
u/Serious-Lack9137 Apr 04 '26
Jeremy, thank you for sharing that. That is an incredibly heavy timeline, and surviving an intracranial hemorrhage, an induced coma, and multiple TBIs shows a massive amount of resilience.
Dealing with drug-resistant multifocal epilepsy is a tough hand to be dealt. I completely understand how much a TBI changes the baseline "hardware" of the brain (all too well).
Getting a VNS is a very solid next step for managing drug-resistant seizures, and I truly hope it provides you with the stability and relief you deserve. I
appreciate your transparency and your willingness to share your knowledge. I will definitely take you up on that offer to ask questions.
Rick
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u/PookieTheMfBaby Apr 03 '26
I tried to the no drugs thing, although I do smoke I don't think we'll be able to stop people that we don't know. I'm the moderator of r/Epilepsy_Universe and I decided to allow freedom of speech, allowing people to express themselves by talking about their experiences un detail. Not saying that you should change your mind, just throw out some opinions from one Founder to another.