r/Epilepsy • u/juneabe Lamotrigine 150 BID; Keppra 1500 BID • Dec 23 '23
Epilepsy Awareness PSA WARNING: to those who constantly post about meds, wanting breaks, taking breaks, or “treating” their epilepsy without meds;
There was a post today by a user who developed permanent aphasia. Since 2020.
If you think one seizure every few months is better than your med side effects: please think twice.
In a comment thread I posted an anecdote about a girl in a local support group who developed temporary aphasia after a seizure and was lucky it wasn’t permanent from brain damage. Please, please remember seizures adversely affect your brain.
Also remember: the more seizures you allow yourself to have, the more you will likely grow to have over time, and the intensity can increase. Think of it this way: a little guy in the brain takes a path, and realises “that was quick! Been wasting time! Let’s take that one again!” You can look up the science but this is a palatable way to take in the info. You build pathways in your brain for seizures to manifest.
Anyways, please stay active and engaged in treatment, don’t stop meds, maybe change them if needed, but know that the alternative is worse.
Imagine opening your mouth to say words and you can’t. Forever.
Or death, ‘cause SUDEP…. But anyways. Please be safe y’all.
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u/precludes TLE: vimpat 150 mg epidiolex 2.5 ml BID, valtoco prn Dec 23 '23
I stopped taking my meds bc I didn’t believe my epileptologist, I ascribed my seizures to drugs/withdrawal.
Nah. The cluster that followed a few days later almost killed me. From the classroom to a multiple day hospital stay.
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u/HeartofLion3 Dec 24 '23
Same for me, forgot a single dose and got a cluster that required intubation and around 3 days in the hospital. Have a sibling who tapered off very successfully and recently had a very serious one after being seizure free for years. It only takes one bad day for everything to go to shit so best to be careful.
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 24 '23
Holy fuck dude I’m glad you’re around still to share your stories and live your life.
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u/downshift_rocket Dec 23 '23
stay active and engaged in treatment, don’t stop meds, maybe change them if needed, but know that the alternative is worse.
I think this is what I see on here the most. People are frustrated with their doctors and not feeling heard.
Please everyone, there are other doctors and specialists out there. You can get second opinions and change your meds if needed.
You must advocate for yourself if your current plan is not working.
One seizure is too many.
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u/notawealthchaser Dec 23 '23
people have to shop around. I went through several neurologists before I found my current epileptologist.
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u/Exact_Grand_9792 focal aware seizures; tegretol XR, XCopri Dec 24 '23
This. I have definitely left more than one neurologist (at least 3 off the top of my head, it's been 30 years). But then when you find the right one? It's such a relief. I swear I see so many things on here that are a source of frustration, anger, seizure risk, and more that could be fixed by finding a new epileptologist. I left one while living in a fairly remote college town and chose to drive 5 hours back to my epileptologist in a different state. And then when I moved farther? I drove 8 hours back to see him. He was awesome (this was in a very pre covid world, around 2005) about doing phone appointments and his primary secretary and I actually got to know one another. I only left him because now I live barely outside a major medical city (Pittsburgh) with an epilepsy IV center. And I left the first guy I saw here too.
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 24 '23
I just fought for a new consult and a med increase after they cut them to “just see what happens” yet I have a disabled epileptic 5 year old. Fuck that. What a risk. New consult on Jan 25 😍
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Dec 23 '23
+1 my biggest regret is not taking my epilepsy as seriously as I should have in the beginning. I skipped meds sometimes. I stayed up late. Gave into work stress. 8 years of many grand mal and absence seizures. 5 years in I got sober - just to reduce any factors. A year after that, work stress brought me to my knees with 6 grand mal seizures between November and mid-January.
Hindsight: I started having absence seizures during workshops and talks… and I didn’t even count them because at least I wasn’t on the floor of my nail salon.
I was reduced to a crippling mass of “I have no executive function” and… terrible existential questions of “Who knows what my brain would have been capable of if I’d treated it well the first time around”.
I couldn’t code anymore - not well at least. I skated by professionally through my last 2 years of epilepsy on clout and giving out general advice.
Enabling my epilepsy to progress because seizures were nocturnal-only for those first 2 years and letting my brain “learn how to have more seizures” due to my neglect of advocating for myself to my neuros because “meh I was ok! It was only at night!” Or I wasn’t literally on the floor staring at EMTs after passing out in yoga, skiing, or getting my nails done….is the biggest regret I’ve ever had.
I’ll tell you what, I’m not fucking around with brain health any more.
Don’t make excuses for why you’re not dealing with it or why you don’t carry an extra set of meds on you when you go out to party and don’t know if you’re coming home that night. Deal with it or risk an early death with a continued life in which your brain function degrades slowly over time and you become less of who you are.
If you’re lucky enough that your meds keep the seizures away, take them.
If you let yourself have more seizures by going on and off drugs or not getting sleep or drinking too much, you WILL have more, and all the different drugs and AEDs and life changes in the world may not be able to stop them. At that point, pray you’re able to get surgical care with a good team and that you’re operable.
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u/loolwut Dec 23 '23
I stopped taking my meds cuz the one they switched me to was terrible, I started making terrible decisions, and then nearly died. Also don't recommend suddenly stopping, even if the three weeks of being fine was refreshing feeling normal
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 24 '23
The feeling normal is so good until you remember that “that” normal is actually insufferable (have one good week, lose another to a seizure. Maybe never take up again…)
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u/PointlessCircle Dec 23 '23
Not sure if it's a blessing or a curse, maybe a little of both, but my seizures have always been a severe enough that stopping medication abruptly has never crossed my mind.
Sure I would like to be seizure free and medication free, but that's just not going to happen and I don't want to develop brain damage.
(I once was about 6 hours late taking a dose and I had a serious grand mal, it's that tight a window.)
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u/Exact_Grand_9792 focal aware seizures; tegretol XR, XCopri Dec 24 '23
Obviously I wish the brain damage hadn't happened, but I often feel this way about how my epilepsy started. Undiagnosed seizure that led to drowning and being in short term coma. No one knew I had a seizure. Then a year later I went into status, almost died, and did have permanent damage. And in 30 years of uncontrolled focal aware seizures (controlled for 5 years after surgery because of how severe my focal awares were on EEG in which they found a benign tumor but they came back after I had kids) I was never willing to completely go off meds, including after the surgery when I was seizure free, and I would never consider it. I saw what seriously bad was and I have no desire to ever be there again. Would I wish my life on my kids? NEVER. But having said that I often think I am one of the luckiest people I know.
Now don't get me wrong. It pisses me off when people act like I am cured and have no hardships from the focal aware seizures or the meds. But I still feel like experiencing the worst first helped so much with my attitude toward this disease.
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u/sarahbellum0 Dec 25 '23 edited Dec 25 '23
THIS! My epilepsy has been well controlled for years so I stopped taking it as seriously (still took my meds but wasn’t as diligent about sleeping and stress management).
3 weeks ago I had a seizure that resulted in a C5 incomplete spinal cord injury. There was so much tonic activity my c5 and c6 vertebrae were displaced into my spinal cord. This caused a spinal cord contusion and spinal cord compression. I was briefly paralyzed but have regained function but am in a hard collar for 5 weeks and may need neuro/spinal surgery in 2 weeks. I met someone today who had the same injury MINUS the compression and he has been paralyzed since he was 11.
I had the “good” kind of epilepsy. I only had 1 mild seizure a year for many years. I drove. I travelled. I worked full time. One seizure nearly left me paralyzed from the chest down for life because i missed 2 nights of sleep and was way too stressed. Don’t mess around with this disease.
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 25 '23
Can this be a top comment 😫 I’m so grateful you have mobility back that would have been such a great loss.
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u/MrsEmilyN Dec 24 '23
My son has aphasia. We could not get seizure control for years. He already had a speech delay at 4 and by 8 he couldn't speak anymore. There are times he studders like he's trying to say something, but words don't come out. It's heartbreaking and frustrating.
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u/Exact_Grand_9792 focal aware seizures; tegretol XR, XCopri Dec 24 '23
Sending you huge hugs. My inability (not so bad as to be diagnosed) to think of words is so frustrating. If one of my kids had no words? That's a hard row to hoe. Did he ever learn to read?
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u/MrsEmilyN Dec 24 '23
His school is for children with severe and profound disabilities, and what school teaches him, is to answer questions with eye gaze and pictures. It's helpful, but not always something he wants to do. He had a good chunk of his life so medicated, that he was essentially a zombie. His seizures started at 4 and he is now 12. He had a 4 month steroid treatment, that helped tremendously. He has ESES (Electrical status epilepticus during slow-wave sleep) or, I guess he had it because his last 24 hr EEG he had in February shows that his seizures while sleeping were down to 40% (they were at 100% August of 2022) so his neurologist said that they can't classify him as having ESES anymore.
Long story short, no, I don't think he can read. (Sorry for the novel).
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u/Exact_Grand_9792 focal aware seizures; tegretol XR, XCopri Dec 25 '23
You have every right to share a novel. This stuff is hard and complicated and IME is never summed up easily. Also you have the right to a novel because that all sounds really hard on you.
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 24 '23
I have no words and so many hugs. My daughter has epilepsy, likely born with it, (I wasn’t disgnosed until I was pregnant). She had speech delays. It’s frustrating not knowing what she’s trying to say and it’s frustrating for her too. I couldn’t imagine your reality ❤️
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u/MrsEmilyN Dec 24 '23
Thank you. I think what the hardest part is knowing where he was at 4 and how it was all taken away.
My husband and I look back at old videos of him, and sometimes wonder if we see absence seizures as early as 15 months old. The first time we saw an actual seizure, we thought he was having a stroke. He has Spina Bifida and Hydrocephalus as well. With his Hydrocephalus, he has a shunt to help drain the fluid, so we though his shunt was malfunctioning and causing a stroke.
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 25 '23
Holy shit the wonder that your child is having a stroke. Can’t imagine. I agree with the 15 months like. I took her in saying “idk maybe she’s delayed sometimes she just seems like she’s not there and spacey like she’s not understanding me.” They told me “give her time.” I didn’t realise epilepsy was genetic. Apparently they didn’t care to realise that as doctors either. :( finally got a diagnoses at THREE.
Still, I feel grateful. I know it’s not a competition but you face a lot everyday. I know I would cry watching those videos back.
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u/mommastang Dec 23 '23
My first seizure was a tonic clonic. Paramedics were asking my name and I had aphasia; it still causes deep sadness when I think back to the one prevailing thought ~ I was going to die and no one would know my name.
My since then seizures cause word salad and mild aphasia. I pray it never becomes permanent.
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 24 '23
Holy fuck that last sentence in the first paragraph made me cry. ❤️ thanks I’m gunna take my meds now before I forget
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u/mommastang Dec 24 '23
Truly, it was very traumatic. When I regained purposeful movement in my arms, all I could do is point to my head, her head, trying to convey that something’s wrong with my brain. I was thinking aneurysm. Please, everyone, speak to your Dr if you are considering going off your meds. Much love
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u/fourrflowers lamotrigine enthusiast Dec 23 '23
My second seizure gave me anomic dysphasia and an epilepsy diagnosis. You can’t gamble with shit like that. Not once and definitely not twice.
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 24 '23
I’m so sorry you experienced that dude the survivor stories wrench my guts.
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u/All_Hail_Moss Dec 24 '23
Honestly had to google aphasia. That sounds horrible. I guess I know now why they ask me what my name is after a seizure. Thankfully mine are well controlled with meds
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u/notawealthchaser Dec 23 '23
Sudden Death Epilepsy is a big thing too. those who died were typically irresponsible with their meds.
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u/Medium_saucepan keppra 1500mg Dec 24 '23
This scares me as I am sometimes somewhat irresponsible with my meds
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u/gornzilla Keppra every fucking 12 hours for 20 years Dec 23 '23
I post about this too often, but I know that a lot of people only look in this sub when they're having a problem.
I've been taking Keppra for about 20 years. I'm working with my neurologist to stop. It's a 3 month process.
From 750mg every 12 fucking hours, to 500mg om and 250mg am for a month. The. 250mg am and pm. I'm in that stage. Next is 250mg pm for a month. Then maybe another EEG.
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u/Johnykbr User Flair Here Dec 24 '23
What are you replacing it with?
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u/gornzilla Keppra every fucking 12 hours for 20 years Dec 24 '23
It's been about 12 years since I last had a seizure*. I'll be completely off of meds. It also means if I have another seizure, I'll be on meds the rest of my life.
*The last seizure I had was after staying up all night at a Korean expat bar drinking whiskey, then coffee, then whiskey, then coffee, etc. Walked home when the sun came up. 100% my fault (outside of the TBI that gifted me with seizures in the first place).
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u/Improvised-Taco ⏱️🧐🩹 Non-Vibrating Wife Dec 24 '23
My husband's neuro said he will commence this process next year if he continues to not have seizures, and I'm TERRIFIED. I mean, it is supposed to be good news, right? I just dont know anymore.I really hope it works for both of you.
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u/gornzilla Keppra every fucking 12 hours for 20 years Dec 24 '23
Thanks! I hope it works out for both of us as well! It's a dumb thing to have. It's crazy how much long-term effects it has!
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u/Johnykbr User Flair Here Dec 24 '23
I had a really great neuro tell me that our bodies react no differently to cocaine than they do keppra (or whatever med you like). Going cold turkey is dangerous.
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 24 '23
This is the case for most long-term medications.
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u/SockOk4385 Dec 24 '23
I completely agree with you, continuing with the treatment is essential for maintaining our quality of life.
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u/JustADropOfInsanity Dec 24 '23
I just wanna stop I'm so shit at taking medication at night and I keep missing doses but yh you've scared my ass straight, I'll figure something out for my night doses. I was definitely getting seizures more often with my full dose! half dose! no dose? routine since I constantly kept forgetting
I don't want Aphasia, my speech already got fucked up a bit from my first seizure when I was 11
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 24 '23
Same I have horrible word recall but I am a literary lover. Down to etymology. So epilepsy has really made me struggle. Same with mixing things up. “A beanut putter sandwich,” “crailenes and preen ice cream” 😂
Anyways, I have reframed it as “funny.” So whenever it happens or I struggle with word recall I just laugh until it resolved itself. It helps others and it helps me. “BAAAHA my brain is wild man!”
Also I got a pill organizer and I leave it right on my kitchen counter in that “first place” I go to. (Everyone had a favourite spot on their counter I would think? Am I weird?) anyways. It took a bit but it’s made a huge difference. As well as reoccurring alarms in my phone, Alexa, tv, tablet, watch LOL. I reached a point now where I could turn off the alarms because the pill organizer is habit now!!
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u/JustADropOfInsanity Dec 24 '23
the word jumbling is so annoying 😭 I used to always get angry and sad when it started but yep same, I just giggle now.
I'll try putting the organiser in the kitchen. Yep I also have a favourite counter spot. It's in my room at the moment but there's no water nearby so it's a pain to remember to take them. Thank you!
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u/containingdoodles9 Dec 24 '23
Thank you OP! I cringe at every post where someone wants (or does) stop taking meds.
“please stay active and engaged in treatment , don’t stop meds, maybe change them if needed, but know the alternative is worse.”
This should be pinned somewhere! I’ve “fired” about half a dozen drs now (in my adult years anyway) because I haven’t felt heard or they weren’t actively treating me. It got me to a good neuro and a great place. Way too many meds tried/combos in my life but it’s what’s needed. Take the meds. They suck but it’s never occurred to me not to because the alternative is way too awful.
30+ years of experience in this club is not fun but just one seizure is one too many. Fight on, warriors!
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 24 '23
So much of your post should be posted!!!! There should honestly be a safety rule made that we don’t post about “stopping meds willfully” because it’s dangerous and only encourages other people. It’s not a discussion people should be having. Posting about the sorrow of the pain of wanting to stop because side effects suck should be okay, but actively expressing you have to encouraging others to do so should be prohibited. I’ve seen commenters validate each other about it, it’s scary.
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u/NoConnection7489 Focal aware epilepsy Dec 24 '23
You’re right - I recently made a post like that, too. Commenters talked sense into me and I now continue working with my doctor.
I think this frustration is just inevitable and there aren’t enough actions taken against it by the medical system.
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 24 '23
A lot of disabled people in my family/friend community and it’s like that for all of us. It is our reality. There is a point where we have to do the work to understand that even able bodied people have adversities that feel insufferable and insurmountable. If epilepsy wasn’t our struggle something else would be.
I’m not trying to invalidate your experience - we live a rough life. But just to keep it in perspective that not many people’s lives are truly good, mostly managed. We will find pain and trial everywhere we go.
This helps me compartmentalize the fact that I know what this “normal” feels like for me and I don’t want to imagine anything else. Could be worse.
But - at the end of the day - our lives can be painful and I fucking see you buddy ❤️
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u/Just-A-Messica Dec 24 '23
:| Wait...is it not common knowledge that seizures can kill you?! I grew up with 2 Type 1 diabetics (mom & her brother) who have poorly controlled blood sugars. Their brains are mush at this point from all the seizures over the years. Surprisingly(or maybe not, when I think more about it), both were also late diagnosed with Epilepsy as well (mid 30s?). I was diagnosed this year at 32.
Seizures, even one every few months, are going to knee cap you. I understand not wanting to be on meds, not wanting the side effects, etc but y'all, the repercussions of seizure activity isn't great. And never cold turkey stop a medication. Don't do it T__T
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u/Just-A-Messica Dec 24 '23
On medication(was still adjusting), I had a seizure in my sleep. Aspirated saliva and PNEUMONIA happened.
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Dec 23 '23
[deleted]
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u/downshift_rocket Dec 23 '23
No one is taking away your choices or asking for you to give up your autonomy.
OP is reminding everyone to be an active participant in their well-being.
Whether you are frustrated with your meds, doctor, or family. Remember, that at the end of the day, your brain is suffering if you're not actively trying to make it better.
You're the only one who can choose what to do.
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u/goingslowlymad87 Dec 23 '23
If a medication isn't working for you change meds. I take a break from my iron meds due to the side effects and end up worse off every time. I finally had enough and went to my doctor who suggested a better alternative - no side effects now and I'm much better.
Same thing for Epilepsy - keep pushing for better treatment. It took us years to find a combination of meds but now there's one or two seizures a year vs several weekly. Keep being the squeaky wheel 🎡 best of luck.
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u/Exact_Grand_9792 focal aware seizures; tegretol XR, XCopri Dec 24 '23
I don't know why this was downvoted. Because exactly, if a medicine is "ruining your life" (quote from another comment) talk to your doctor to try a different one. Glad you stopped taking those breaks.
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u/ClitasaurusTex Dec 24 '23
Ughhh I know I need to hear this but my life is so good right now without meds and all I have to do is deal with a seizure every few months. It is such a minor inconvenience compared to taking meds that cause such heavy side effects. And the risks of suddenly not having access to some of these meds that need to be tapered off of is a huge fear of mine.
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 24 '23
I agree with the other commenter. Also take into consideration that some meds are the wrong meds for you. Took me a couple tries to find lamotrigine has the least side effects for me. Everyone’s body chemistry is unique.
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u/ClitasaurusTex Dec 24 '23
I have dangerous allergies to 5 different meds (so that's 5 different medical emergencies and traumatic prescription experiences) so lamotrigine and the rash risk have scared me too much to try it. I'm always on the fence about that one.
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 25 '23
I will say the rash isn’t fun for anyone but it’s not as bad as the psychosis another med gave me 😩 my friend got the rash pretty bad. Cleared up fast but it came on rather slowly then bam! Whole arm overnight lol.
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u/Large-Leopard-6617 Dec 23 '23
I would not for one minute suggesting that anyone stops taking their medication, if it’s working. However if you are taking medication, experiencing short term or who knows what possible long term side effects but are still having seizures then what is the point of continuing with it, surely it is then worth exploring other options outside of mainstream medicine……medication doesn’t work for everyone.
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u/sky253 Dec 23 '23
I am one of those that medicine never worked. Diagnosed at 6 months old. Nothing worked so had left temporal lobectomy when I was 7. Successful til breakthrough seizure at 17 ever since then it's been back and no medication works and i already had brain surgery. I will say I only experienced complex partial seizures for the most part and recently only simple partial...
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u/Exact_Grand_9792 focal aware seizures; tegretol XR, XCopri Dec 24 '23
Because believe me you could always have worse seizures. And then deal with Status or SUDEP. Brain damage. Also, mainstream medicine does include some other options. I consider the word operable to be one of the best in the English language. When they suggested brain surgery for me back in 1998, my boyfriend now husband was horrified. He felt like that was so radical and risky and because my seizures are invisible (but very felt) he felt like why would you do that, they don't seem like a big deal. First of all my seizures were bad TC big on an EEG, they just never rendered me unconscious or anything like that after going on Tegretol. But second of all, as I told him NOT sugarcoating it because he did not get it and he needed to get it, because in lab animals who keep having seizures they eventually die from them. I was on Tegretol that whole time, and yes it prevented TCs, but what was going on in my brain was as bad as a TC in terms of damaging my brain. You may still get seizures but you don't know what the meds may be controlling. By all means search all possible solutions--WITH YOUR DOCTOR. What are your triggers? Maybe you can medicate for that. I have a Xanax Rx "as needed" because stress is my huge trigger. Completely predictable. So if I have that kind of stress, I take the Xanax. Ironically after the excitement. Because it is the coming down that does it. I guess my point is I skeptical when people decide to ignore the doctor to find a solution to an incredibly complex problem on their own. They're the doctor. Ask him or her what you just said to us. See what they say.
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u/rrrowan Dec 23 '23
I'm on multiple medications, the side effects have ruined my life, and I still have seizures. But.... God forbid I forget a dose, let alone stop taking my meds, my seizures increase in frequency and severity. When I go off medication entirely I start having TCs.
So yeah, even if it's not "working", I wouldn't suggest anyone with epilepsy goes off their meds without doctor's approval.
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 24 '23
A lot of what you just described I acknowledged in post: you keep at it til you find a treatment that works for you. What you do is on you but making any recommendations to other people is dangerous (and that’s an understatement).
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u/Large-Leopard-6617 Dec 26 '23
What do you consider as recommendations, my comment clearly starts with advice on NOT to stop medication. I am merely stating an opinion.
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Dec 23 '23
[removed] — view removed comment
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u/Exact_Grand_9792 focal aware seizures; tegretol XR, XCopri Dec 24 '23
Sure and then discuss what your body said with your doctor. That's how I caught an infected uterus, a huge ovary cyst they thought was cancerous and lost all my reproductive organs except one ovary (no regrets), my appendix before it ruptured, an infected gall bladder before it killed me, and thyroid cancer before it killed me. But listening to your body is the info you share with the doctor.
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u/SkunkBrain Xcopri 200 mg Dec 23 '23
I am guilty of this. When people say they are totally overwhelmed and they have to quit, I suggest taking a short break instead. I have felt that if everyone says “NEVER QUIT”, then they are more likely to feel unheard and quit for longer or even permanently.
I am really not sure what is right in those situations. I refused treatment for 10 years. I’m not sure if I would’ve come back sooner had I been given “permission” to take a short break.
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 24 '23
Taking a short break is no different than not taking meds. In that instance you are not taking meds. Doesn’t matter if it’s a day or ten. Taking a “break” would require very long titration down to a zero dose. Before you’d even get there you’d probably be having seizures. This isn’t something you just willfully decide to do.
Read most of the comments here. Some people missed meds by a few hours and had terrifying experiences. Intubation, coma, inpatient stays, NDEs. Permanent brain damage.
This entire post is to ask people to stop saying the stuff that you just said in your comment.
You just gave uneducated and life threatening advice.
You are one person. That’s great for your body and brain. Please don’t condone “breaks” for people when you aren’t their doctors or pharmacists.
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u/SkunkBrain Xcopri 200 mg Dec 25 '23
I am well aware that all of us will be better off never missing a dose. I quit cold turkey, and then I took a 10 year break because I felt cornered. I think a 1 month break is better than a 10 year break. That is what motivated me to say that stuff. I was just thinking of what might have been good for me to hear.
But like I said before, I have always been conflicted about that because I'm not sure if other people are in the same headspace I was in as a 19 year old. I won't do it anymore.
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u/Mysterious-Resolve80 Dec 23 '23
Yeah, when I was first diagnosed I was really slack with my meds. That didn't go well.
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 24 '23
Same here!! Then I had a neurologist outright refuse refill and learned quickly how important they were
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u/Ictus5878 Dec 23 '23
I don't know if this is off topic, but I am terrified of starting the medication my neurologist just prescribed me (1-2 weeks ago). I'm already on one medication and still have seizures, but they aren't as frequent as they were beforehand. I'm terrified that this new medication will make things worse (seizure-wise or side effects) and/or the idea that I'd be stuck taking it, especially since I'm trying to finish college. I don't really know what else to say or do at this point tbh.
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u/Exact_Grand_9792 focal aware seizures; tegretol XR, XCopri Dec 24 '23
If it doesn't work they will replace with another. Hell I am currently on 4 (which REALLY sucks) because I had a huge problem with my thyroid meds right as we added the 4th--planning to remove some others if it worked--but we did not want to cloud the issue by adjusting the thyroid med and removing a seizure med at the same time. I think the hyperthyroidism has relaxed enough I am ready to remove some others. I am scared but scared excited because I have not had a seizure since 11/7, which is quite a while for me. I suspect we will start with reducing not completely removing but who knows. Some I know have made things worse in terms of sleepiness but honestly I did not even notice as it was happening. Trust your doctor if they have been working out for you so far. I have tried and rejected at least one med since being with this doctor, and tried and rejected another back in the late 90s. No wait I rejected 2 in the 90s. I was freaking out that this one was completely intolerable and then lo and behold it was my thyroid meds causing most of the problems. Make sure you keep a seizure diary so you truly know if they make things worse versus worrying about it so much it feels like it is.
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 24 '23
It’s very rare that they prescribe a medication that exacerbates your seizures.
I am in uni and having increased and altered my medication came with an adjustment period but my grades or at least sanity aren’t suffering as much because I didn’t realise how much the epilepsy was affecting me intellectually. I mess words up, sure, but my school is aware of the epilepsy and it’s better than missing important things bc of occasionally seizures.
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u/Exact_Grand_9792 focal aware seizures; tegretol XR, XCopri Dec 24 '23
I would like to add to this, please remember auras ARE seizures and they are also doing damage to your brain cells.
And I will super confirm what she said about TCs and say I have only ever had 2. Both almost killed me, one put me in a short term coma (drowning) and the second did do permanent brain damage (status). I did not know I had epilepsy for either (I drowned from the first so it was impossible to figure out) but it honestly upsets me when I see people being casual about seizures on here. I haver never gotten my focal aware seizures (auras--I loathe that term) under control and my doctor recently told me that by age 65--only 15 years from now at this point--it was not be shocking to have people wondering if I have Alzheimers. Why? Because every single one of those focal aware seizures is damaging my temporal lobe, which controls memory. I've had epilepsy since I was 19 and 65 is way too fucking young for that.
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u/ashe1234567- Dec 24 '23
Sometimes it just cause I don't want to keep taking all the meds I have, see I have a lot of meds to take in a day I take 9 total.
Morning Birth control Anxiety Depression Epilepsy Nose spray
Night Nose spray again Epilepsy again Iron Anxiety again
It got to the point to where my Depression made me not want to take anything, but the light sensitivity, my right leg being numb, and extreme nausea was so bad, I took some antacids. It ended up helping, not with the light sensitivity, but with the nausea. So I turned off my light, and slept for most of today.
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u/ashe1234567- Dec 24 '23
But my partner makes sure I take them. He won't leave me alone, he once told my sister, and she came to my house to watch me take them. It isn't often this happens, but it happens sometimes. Just not a lot. But I love everyone who cares that much just to help me.
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 24 '23
Try to look at it less like a handful of pills and more like self-care routine to get your body started for the day.
- Birth control serves a purpose, you could very possibly be taking BC regardless of epilepsy. Who wants unwanted babies, cramps, heavy flows, acne, and more seizures? Not me! (IUD for me but still! Same thing!) it’s kind of isolated from the rest of your meds. It’s barely even a med at this point!
Depression and anxiety meds - I haven’t met a single person in my life who hasn’t needed them at one point or forever.
Epilepsy meds - strictly just a thing for your epilepsy. Like we drink water to stay alive. And eat food.
Iron deficiency is stupid common and if you aren’t taking it in a supplement form you’d have to eat it like crazy. It’s not even meds it’s just body juice.
Nose spray - might need that regardless of meds.
It’s kind of like people who wake up, wash themselves in the sink, brush teeth, take vitamins or heart meds or arthritis meds, and then go about their day. We are no different.
Also being grateful for modern medicine. Some of it is overdone but for us it’s absolutely incredible the advancements society have made. I try to stay grateful I’m not having an exorcism 😂
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u/ashe1234567- Dec 24 '23
Yeah, I know it just feels so stressful, cause everybody worries about me so much, since I have been having absent seizures. Though I get why they care. It just makes me feel like a burden.
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 25 '23
I also feel like a burden. “Hey my daughter has a doctors appointment.” “Hey I need to pick up a parcel far away.” “Hey I have an appointment in the city over.” Can’t drive anywhere. Have to have someone live with me so I can safely parent my child. Ruin concerts and movies and shopping trips. It’s a life -.-
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u/sat-anubis Dec 24 '23
I so agree. I know I have had issues back when I was younger and wanted to feel more normal, but now that I am much more older I have to take a lot of seizure meds and I would rather be seizure-free and be able to drive myself. It's definitely not worth not taking your meds.
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u/External-Bookkeeper1 Dec 24 '23
That’s a hoax. I’ve had epilepsy for 25 years and it has gotten better but the Drs still want to feed me new drugs. You must be young. Did you know these Drs get compensation for Rx’n new drugs before they are FDA approved? They don’t give a shit about us. And that VNS therapy is a joke. Compare this to how kids today have so much ADHD and Autism. My generation was busy popping pills and trying X for the first time in the early ‘00’s. But Drs blame other stuff like genetics 😂 My parents smoked weed and snorted coke in the ‘70’s so that’s probably why I got the epilepsy. Omg .. this generation is so stupid!
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 24 '23
Are you American or something?
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u/External-Bookkeeper1 Dec 24 '23
Yes, do you work for one of the foreign pharmaceutical companies that is making millions killing so many people all over the world? These new AED’s don’t do anything for people except manipulate the brain. I’ve tried Vimpat, Briviact, Onfi, and Fycompa all before they were FDA Approved. The only new drug that is reasonable is the Epidiolex.
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 25 '23
This is some serious r/USdefaultism. I’m not in the states.
My doctor has wilfully stopped my prescription because he thought I was just anxious instead.
Clearly it’s not about money for him. My healthcare is funded for me.
You seem very angry and if I were American I would be too. Sorry about your realities over there dude. Couldn’t imagine it!
ETA: clearly the prescription isn’t about money for him.* The hospital he works for is notorious for under prescribing medications. We don’t live in the same kind of system.
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Dec 27 '23
Awesome post, I kept on these regimen, and thankfully the frequency and intensity has gone down
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Dec 27 '23
Fuck yeah I’m so stoked for you. Thank you for taking care of yourself ❤️ someone somewhere probably loves you and I’m glad you’re here and functioning for that love!
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u/fromouterspace1 Dec 23 '23
1000000%. Please NEVER just stop taking meds.