Lamictal for siezures

So this happened I want to say when I was 26. I'm now a 31m. I have worked construction since I was 17 and never had an issue with injuries. By the time I was 26 my doc put me on Lamictal as I was still not fully detoxed from benzodiazipines. About 2 weeks into this had a grand maul seizure after stopping the Lamictal. When I came to it hurt so bad I was screaming in tears. I thought I would never be able to walk again during that moment I was lying on my back. I was told the siezure lasted 25 to 30 minutes. Fast forward the doctor gets my x ray results and calmly explains that the small muscles next to my spine which are not usedfor much. Were contracting, therefore rubbing my t6 and t7 vertebrae together and grinded them down. Now 31 still doing construction chopping wood etc. It's getting more extreme and I need some helpful advice (can't do surgery). Mornings are 10 out of 10 even if I didn't overwork the day prior. Please any help is appreciated I've ignored this for too long.

I started taking Adderall at 5yr when I was diagnosed with ADHD and was on 180 mlg by the time I was 18(they tried other AHDH meds, they didn't work) The siezures started when I turned 22.
My Psychiatrist started getting dementia the last year or so I was seeing him and retired right after I left highschool at 18. I hated being on the Adderall, and that was the only thing I saw him for so I started cutting down on it and was completely off of it by 19.
A few months before my 22nd Birthday, I started a new occupation that required me to focus and pay attention so I started seeing another Psychiatrist and taking the Adderall again (low dose 5mlg) but they also diagnosed me with BPD and put me on meds for that. Although I can't remember which one
My first ever seizure was two days after my 22nd birthday and they told me it was caused by alcohol withdrawal after binge drinking on my birthday weekend. I stopped drinking entirely after that, but then had a 2nd one 2 months later. The 2nd seizure was behind the wheel of my car, car was totaled and airbags got deployed but luckily I was on surface streets. I hit a parked car and was hit by the car behind me, the driver of the car behind me reported that I was having a seizure when they got out and went to approach my car.
I lost a good chunk of memory, lots of experiences from my younger years, things history related, second language, and chronological order. I still have memory issues.
I briefly remember seeing my dad(deceased 20yrs ago) then a flash of being in an ambulance and then waking up in the hospital. They told me my heart stopped for 6 seconds then I asked for a phone to call my mom.
They did all the tests, MRI, EEG, CAT, etc. But nothing came up. They put me on Keppra at first and then switched me to Lamictal because it treated the BPD and Epilepsy.
I was siezure free until last July, I was under a lot of stress and not really eating much or drinking enough water and I'm pretty sure that's what caused that one. Now I've been having them at least once a month and I've been taking care of my body. They were upping the Lamictal and then added keppra but since they put me back on the Keppra, I've just been really dizzy, feeling like I'm getting vertigo and sleeping a lot.
They keep adjusting the levels to try and get the right balance but I think I am still having the seizures, they mostly seem to happen in the middle of the night or early morning. It's been difficult getting appointments with neurologists though.
TDLR; on a lot of Adderall as a kid 5-18, stopped taking it for a few years 19-21, started again with an added medication for BPD, then developed late onset epilepsy. Any relation?

 I'm on Lamictal 100mg 2/day. I've been on this medication for 3 years now and it seems my body is finally adjusting to the point of nope. If I'm lucky enough to feel an episode bubbling up I'll take a 3rd and it helps. My Dr is old and stuck in his ways and there are none other in my area to deal with this problem so I had the thought if I knew some other meds and took a list into him maybe he'll see one he may want to try. I'm at the end of my rope here. If I woke up dead it wouldn't be the end of the world you know. I also have a kidney disorder where I pass stones on the regular (sitting on 9 of em right now) and I learned to deal with it but these progressively worse siezures is almost a bridge to far. I'm so far past being fed up and man it's rough knowing there is always an easy way out. For clarification I will not do anything to myself. I have people who love and depend on me and it would be so selfish to do something that foolish knowing I would be destroying some people's lives I love and love me. It's just how I feel sometimes. Siezures blow. Full body pain, lost memory, over emotional, usually come outta no where, can't drive they just fuqin suck. 

 Don't know how many this applies to but I'm sure there are a few. I've been having siezures going on 4-5 years now. I've given up driving because I cant go more that 3 months without having one and where I live the threshold is 6 months so that in it's self is aggravating. I used to be very athletic from Jr. High through College and after graduation I would still run 5-7 miles every morning. My 1st siezure I had no clue, just knew I went out bit tounge foam everywhere and every muscle feeling like I tore them (yes all of them.) Now o cant run because it's a trigger any more that 50yds my legs just disappear and I go down. It seems as though the siezures I've been having recently have a tone more emotion on the back end. Yesterday when I finally snapped back into life it's almost like my body forced a long hard cry for 20-30 minutes. I'm on lamictal for (controll) but I'm losing faith rapidly. Sure it helped at first but it seems as though it's falling off quick. The Dr I was seeing retired and the only other one in this field has an 9 month wait even if you were hospitalized. I just seem to become more emotionally troubled after each one and I'm also losing more time (just blanking out.) I don't know, I thought this may help but it feels like it's jibrish. Sorry for the waste of time. Hope all is well. 

My name is Zac 31 today. I was diagnosed with a brain cyst in my left temporal lobe. The type it is pretty common as brain cysts go but very few people who have ever get a symptom from them. She also explained it's very unusual for them to grow and she wanted to monitor for a while I prescribed topamas at first I dont that it actually helped at the point the cyst had not grown yet. Next time I saw I was take off topamaxe it was causing me to incapable producing thought. I mean thought I cant remember the term so she switched me keppra(I'm it's some people, I feel like is legit poison the pharma company paying neuro tons to prescribe. ) at this point I believe I was on it for less than 2 weeks. My mom, dad, and older all called about angry and of control I since the switch. I guess it was really common side effect of keppra. I am sorry it's long but it make sense. I cant remember the next one but I do that this is when she discovered the cyst had grown a little. At this point I was a bit older than 15. She explained what the cyst does as grows and why it has tentacles. It eats away my brain tissue and makes the parts it touches blank. She kept trying me on the safe meds I just had negative reactions.to pretty much everything she tried. Lamictal was found eventually but were still too frequent on a high dose of it. I remember her telling before she added the next med. That they tried really not to prescribe these often. It was only for people who did choices and since my reactions were bad. A lot of slowed my conigative function and pretty ugh stopped my reflexes. So she put me diazepam a low dose at the start 1 morning 2 at night and if I could tell I was to have one lay down. It dropped the amount of siezures I had. Then she upped the dose I think the 10 mg when I stopped having them. I took 1 in morning and 2 of them af night I'm pretty sure lamictal was 2 times a day it could of been 3. I also had enough extra diazepam like 3 or for times a week for rescue. I never really had to use it. So after my previous neuro retired got switched to another one. This guy is the only one in my area. He immediately put me on keppra and then depakote when I hit 2000mg keppra inning and night none of these meds help at my siezures are worse than they have ever been I'm luck if I only have 4 in a day. Before my neurologist retired I was 10 years siezure free. I'm sure angry and irate all of time which I'm sure is from keppra I'm normally relaxed and quite. I think having the depakote has reduced the number slightly from just keppra. As of two weeks it's been 3 years since my previous neuro retired.this dr really seems to just be making epilepsy worse. I found out my last appointments he hasn't listened to a word I said. He asked how siezures were and I said they out control. H

i didn't know that most seizures weren't painful. mine are very painful and getting worse. i'm really upset and the phrase "i can't live like this" keeps running through my head. first a long explanation, then some processing. content warnings for....despair. and descriptions of big pain? thanks for coming to my XXL post and reading my life story.
tl;dr: does anyone else have horrible pain with generalized seizures? how do you cope? does anyone else have atypical seizure disorders that makes their course of care unpredicatble? any anecdotes about being condescended to in the ER? tbh any supportive replies are welcome. also feel free to ask me any questions about my situation/atypical bullshit. i'm an open book.
my seizure disorder is the result of an AVM (arteriovenous malformation) that had caused focal onset aware seizures of the 'jacksonian march' type, always/only on the right half of my body, as my AVM is in my left parietal lobe. these seizures have come with soft tissue pain (pinching and squeezing in a pulsating rhythm). this pain is uncomfortable but manageable, never more than a 5 on the pain scale. and it passes in 2 mins or so. I had gamma knife radiation to treat the AVM in Jan 2020 and since then I've had complications that are atypical to most people who have this type of treatment. I have worsening edema and i had my first generalized seizure in feb of this year. i had my second one last week. the first one turned out the be the result of a microbleed (read: tiny hemorrhage). i lost consciousness and there's no way to know if it was because i ran out of oxygen (couldn't breathe for about 30 seconds) or if it was just a feature of the complex seizure, as i had post seizure cognitive issues as well. either way, it was very terrifying. i'm sure the fear and distress that comes with your first few generalized seizures is a familiar story to lots of you. this one was also really painful. both the regular soft tissue pain in several focal aware seizures in the hour leading up to the generalized one, and then during the seizure, muscle cramping pain that felt like the worst damn charley horse you've ever had and then some.
at this point, i was put on keppra and upped my lamictal dose (i was already on 300mg/day for psych issues) and i've still had my occasional "regular" seizures [focal aware, very mild ones] a handful of times since now and then. last week i had another focal aware siezure that escalated to generalized. this time it was primarily the muscle cramping pain and it was off the charts. i was literally screaming in pain, and yelled "make it stop" and was begging/pleading out loud for the EMS to come before the seizing hit my respiratory muscles and i couldn't breathe for about 15-20 seconds. i didn't lose consciousness or have any cognitive disruption at all this time. in the hospital my neurologist said that my edema was worse than my MRI from a month ago, and it could be petechial hemorrages from where the AVM is shrinking post-radiation but leaving bits behind. (think of a blood blister popping. but instead of under your skin its your brain tissue.) my experiences at the hospital sucked, and bc i have an abnormal seizure disorder the neuro team in the ER were kinda gaslighty, basically saying that this was "a regular seizure but more intense" and "did you just come here because you were freaked out?" like, no, last time something like this happened, i was having a brain hemorrhage. i've had very intense versions of my "regular" seizures and never escalate to generalized. but in the past week since i was discharged, i think i'm in a position where i might have to start thinking of my 'normal seizures' as auras to generalized ones. which i fucking hate. i don't accept that this will be my reality. i can't.
i'm on steroids for now to hopefully help with the edema but there's no way to know how long-term the edema will be. i'm weaning off them now since its a two week course and i'm through week one. i think i am having auras, or the tiniest hints of sensations of my "regular" seizures, and and i (and my epileptologist, and my neurologist) are a bit at a loss for what comes next.
i didn't know that most seizures aren't painful until i was speaking with my mom this weekend and she asked about it. i was so upset when i started doing the googling and speaking to my neuro team.
there isn't any way to control what is physiologically happening in my brain. the AEDs only work to a certain extent for my situation, and we'll just keep increasing them (hoping to switch to something else from keppra in a month or so...the usual story). and it seems like no one knows whether i will keep having these generalized ones. i know this is probably a grass-is-greener thing, but i would rather have cognitive-disruption or blackout seizures and be spared the pain than be conscious and constantly waiting for the other shoe to drop with sudden agony and no knowledge of how serious it is. i have to go to the ER every time i have a generalized seizure out of fear that it's another bleed. and then get lectured by people who think it's a more typical type of epilepsy and i'm overreacting. i don't know how to cope.
i've dealt with lots of psychological problems in my life, and i have good coping mechanisms for all the dumb shitty stuff that a depressed and anxious brain can do for no reason. i don't have good coping mechanisms for managing these feelings when there is a good reason that NOTHING CAN BE DONE TO FIX. besides that, before my seizure in feb, i was on a pretty good balance of psych meds and was on the upswing, and then keppra came in like a wrecking ball. i know that that's effecting my ability to cope and the steroids are elevating my anxiety too. i feel like i'm looking down a long dark tunnel and there's no light at the end. #sciencedoesntknow how to fix or treat my brain. does anyone else live on the cusp of intense physical pain as an epileptic? on the cusp of suffocating at any time?
i know this is ending on a bit of a dark note but this is the place where i feel like i can let some of this out. the AVM subreddit isn't that active bc there aren't that many of us with this type of brain lesion, and symptoms are hughly specific to each person, based on where in the brain the AVM is. i keep ending up being in the 1-5% groups of people with complications or unique symptoms. i feel lost and helpless.

EDIT: I am aware that by definition, an absence siezure is typically unnoticed by the sufferer. However, please read the post and understand why I think this is unlikely, and bear in mind that the neurologist agreed and was very surprised that I haven't experienced any consequences and that no one else notices anything.
EDIT 2: I saw an epilepsy specialist on referral from the original doctor and she confirmed that I did NOT have an absence seizure, and that my EEG reading was completely non-pathological. Don't be afraid to question your doctor if what they're saying really doesn't line up with your experience.
Hello,
I'm a 33-year-old male and a couple months ago I visited the doctor because of trouble sleeping and headaches. I was referred to a neurologist, who ordered some testing etc. but also referred me to a sleep doctor.
In summary, the sleep doc found that I have some breathing problems at night, not rising to the level of sleep apnea but clearly an obstruction, likely due to chronic sinusitis/deviated septum that I had surgery for at 17 and was warned might recur eventually. Referred to an ENT, appointment is in a week. This can potentially explain the headaches and sleep trouble.
Meanwhile, the neurologist ordered an MRI with contrast and EEG. I haven't had the MRI yet but the EEG showed a pattern indicating an absence siezure during the hyperventilation portion of the test.
The neurologist asked me if I'd ever had any attention problems, been accused of daydreaming mid-conversation, gotten into a car accident, etc. but I've never experienced anything like that. Nobody who knows me has ever witnessed that kind of event, and infact most people consider me to have a remarkably good memory and attention span; I'm very successful academically and currently working on a Ph.D. I was the same way as a child, no learning or attention problems whatsoever and no apparent absence siezures. I'm not often alone at home (married) and at work I frequently perform lab work as part of a team and attend meetings, give presentations, etc., where people would absolutely notice if I spaced out even for a few seconds. I also drive a car daily, and never experience any gaps there and have never had an accident.
So the neurologist wants me to start taking lamictal for 3 months and see if anything improves. His rationale is that even though I don't seem to be affected by absence siezures day-to-day, I might take the meds and realize that I feel a whole lot better. I asked him, since the headaches and sleep trouble could be caused by the sinus thing, if I get that fixed, how will I know what was the real cause? And he said I should avoid taking any action on the sinuses until after taking lamictal for 3 months. That way, if all the sudden I'm feeling great, I know the lamictal is fixing whatever the problem is. He was perplexed by my apparent lack of siezures in day-to-day life, and didn't really attempt to explain it; he just said the result of the EEG is clear and objective.
I'm hesitant to start taking this drug, and also delay fixing a known problem (the sinus thing), when the doctor can't provide a strong explanation for what's happening. He offered that I could get a second opinion, but at the time I said no, I'll take the meds. Honestly it was a lot to take in all at once, since I wasn't expecting anything remotely like this. In retrospect, I'm not so sure what to do.
Thanks!

Hello, I'm a 25 year old male, weight 115 pounds, caucasian. I don't drink or smoke (except medical marijuana through a vape pen).
My blood tests.
They're two separate tests, one I was fasting and the other I was not.
Medications: lamictal, levetiracetum. For epilepsy. Past Medications were acne meds.
I'm worried about a few different things:

1. I got a tattoo on my ankle about 3 years ago, and I noticed that it's not inflamed, and some of the black ink is leaking' to other areas around it. I went to a dermatologist today and he said that it's just my body reacting to it, and there's nothing to worry about. I think I'm going to get a second opinion. I don't want it to lead to cancer or some dangerous skin disease or blood disease. Around the tattoo is inflamed. It hurts occasionally. And my hair growth out of the tattoo has diminished. And I can barely flex the leg muscle on this leg.
   
2. I'm worried there may be something with my gut. I think it began when I took a hardcore acne drug called Accutane that's supposed to be really harsh on the stomach. I stopped taking the medication within a week. But ever since, I think I'm losing weight and getting bonier. I'm worried that I may not be able to metabolize certain nutrients and vitamins. Or may be lacking in a certain enzyme necessary to digest certain foods. I really noticed this when I ate a medical marijuana edible and it didn't get me high. Edibles are really potent and I found it odd that it didn't get me high. When I smoke it, I do, but when I eat it, I don't. So I figured it probably has to do more with my gut and digestion than my brain.
   
3. I read that the gut and digestion and whatnot is deemed "the second brain" as it has a lot of affects on the brain. So I'm worried that if I do have a gut issue, then it's affecting my brain. I have epilepsy (simple, partial siezures) and I'm on medication for it and haven't had a siezure in about a year and a half. Recently I noticed that I lost the ability to keep a beat to music, like when I tap my foot and dance. I don't think it's being tone deaf, it's merely my body's inability to keep the beat of the song.
   

Additional symptoms:

• I feel like I'm getting skinnier and bonier. I believe I used to weigh about 125 pounds about a year ago.
  
• I feel like the texture of my skin has changed, feels more smooth and elastic. I had two doctors look at it, and they said it looked normal.
  
• My eyes seem really dirty. I went to an optometrist and she said they were fine.
  
• My toenails and finger nails have stopped growing.
  
• When I go to the bathroom, my stools are sometimes yellowish.
  
• At work, I got a small cut on my leg from a rake, and it didn't heal very well...around it is still inflamed.
  
• I have a lot of stress, some depression, some anxiety, some fatigue.
  

Things I'm worried it could be: lupus, Ehlers–Danlos syndrome, luekemia, thyroid issues, kidney issues, addisons disease, an inflammatory arthritis issue, psoriasis, scleroderma, allopaecia, linear morphea, Hodkin disease, cirrhosis, celiac disease, sarcoma, or Behcet's Disease.