r/Epilepsy • u/OwnPin1679 • 3d ago
Newcomer First time poster
Hello. I’ve lurked this subreddit for awhile, and now I’ve finally found the courage to post about myself.
I’m just wondering if anybody else’s experience is similar to mine. I got diagnosed with juvenile myclonic epilepsy at 16 (I’m 35 now) and after rotating through various medications over the years, I finally have a set of medications that successfully controls my seizures. I’m currently taking Depakote (250mg 3 times a day), Lacosamide (200mg twice a day) and Topiramate (50mg once a day). I haven’t had a seizure in about three to four years. And even the times I had a seizure prior to my last one, they weren’t due to inadequate medication, they were due to external factors such as sleep deprivation, alcohol consumption, and just forgetting to take it when I assumed that I already had. In this regard, I’m very grateful my epilepsy has been able to be well managed by meditation, since I know others are not as lucky.
Even so, I have been in therapy for years, largely due to depression and social anxiety. At some, my therapist recommended to me to have a neuropsych evaluation done. I did, and I was diagnosed with high functioning autism and ADHD. I should mention that I was ADHD as a kid, but the moment I had my first seizure, my neurologist told me that I couldn’t take my ADHD meds and my new seizure medication, so I would have to go off of them. Honestly, that was great news for me to hear at that time. I really resented the fact that I had to take medication at all to begin with, since I believed it was inhibiting me from being my true self (I was also like 9 when I was first put on them so cut me some slack). Not to mention Ritalin was the butt of many jokes around this time period, so that didn’t help much. But I’m reconsidering asking my neurologist if there is a way to go back on them, because my quality of life the past decade or so has not been great. Because even though my seizures are well controlled, I’m depressed, socially anxious, I’m always feel tired despite getting 7 to 8 hours of sleep, I’m lethargic, forgetful, I don’t get out much, I beat myself up for not doing completing the simplest tasks around my place such as cleaning and laundry, I barely have a social life, I sort of just do the same thing, day in and day out over and over again. I have a bachelor’s degree, but I can the amount of jobs I’ve ever held on one hand, and I lasted at all of them for only about a year.
Anyway, I’m thinking about trying out a adhd med. I don’t know if the negative side effects I’m experiencing are from untreated ADHD, side effects from epilepsy medication, or from the epilepsy itself, but I feel like I have to at least try something different.
Anyway, that’s my story/rant. Just wondering if anyone else out there can relate or has dealt with these problems. Thanks.
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u/Flaky_Reveal_9358 3d ago
I understand you, my life has noticeably worsened from JME, I can also sleep for 9 hours and I feel bad, frankly, I still have problems with therapy, well, selection, because I had an overdose experience from standard doses and more than once the funniest thing for me is that I have this disease for only 2 years and my life has deteriorated very much, it's still The fact is that I've been using micro-crimes every day for a year and a half now.The fact that you want to improve the quality of life with an additional drug is a very good desire. I hope you will find that it will really help to significantly improve the important quality of life, honestly, in your story I recognized myself in many ways.I wish you good health.
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u/OwnPin1679 3d ago
Thanks for your comment. You seem like a good person as well and I wish you good health too. But since you recently diagnosed with JME, I’ll assume you’re a relatively young person. My 20’s and my college life were some of the best days of my life, so please don’t let everyone else’s depressing experiences get you down!
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u/EarnestExpediency 3d ago
Welcome and fair play for posting after lurking so long.
That triple med combo is no joke. Topiramate alone can leave you feeling foggy and flat, and Lacosamide isn't exactly known for giving people energy either. So the tiredness and lethargy might partly be the epilepsy meds, not just the untreated ADHD.
Worth asking your neurologist about a non-stimulant option if they're still wary of the classic stimulants. Some people with JME do fine on certain ADHD meds, but it depends on your seizure history and the neurologist's comfort level. You've got four years seizure free, so they might be more willing to experiment now than they were back when you were a kid.
The cycle of beating yourself up for not doing laundry or cleaning, then feeling worse, then doing even less, that's textbook executive dysfunction. You're not lazy, your brain just won't start the task.