u/Charlottebagginton

So i have pvnh, apparently i had sezuires since birth but no one noticed since it looked like panic attacks/day dreaming or mild twitches. (I have myclonic, absences and aware focals) ​I went from having over nearly 2 dozen a day(nearly 50 on bad days) to none in the last 2 weeks. :)

When does this leave. I've been feeling so depressed for the last week on keppra(been on it for over a month and a half now) Does it eventally lift or not? Im scared to try other meds since I have pvnh so I have to get checked for heart/lung issues. :( *forgot to add but important i did get a increase 2 weeks ago, I was on 500 twice a day now im on 750 twice a day

So ive been on keppra for over a month and a half now. It completely flipped my sleep. If I try to sleep at night I'll be lucky to have 3 hours of sleep, meanwhile in the day I'll easily be able to sleep 6-10 hours. No idea what to do, I know from past experinces a ton of sleep meds for me dont work(inculding melatonin) I noticed that this "flipped schedule" only gets really bad after ovulation up to my period aswell. Its weird im still getting decent sleep but its just not at the time i want??

So I was dignosed with pvnh last month, it was comfirmed all my "anxiety" and "panic attacks" were focal sezuires. Which apparently i was having 20-40 a day. I lost the ability to work entirely slowly as they got worse and more frequent in the last 7 years roughly. Ever since I told my husband/his family im going on disability since im still having breakthroughs and pvnh is notoriously hard to treat with meds, several of his family members went behind my back(used to call me family btw 🙃) and texted my husband how im "being dramatic" or "shes not helpless" or "others have it worse" (husband stood up for me btw during this) ​I didnt choose this easily btw. I didnt choose to be born with a rare illness. I didnt choose for meds to be rough with me. I cant even take a shower or cook a meal for myself unless im watched/reminded consistently of what im doing if it takes over 15 mins. I litterally celebrated 2 days ago that I was able to stay awake the whole day and sleep the whole night(other then 1 wake up). But then ovulation hit. Welp learned the hard way apparently my hormones trigger my epilepsy lol. Did it for one day tho which is awesome. Anyway, also adjusting to a new keppra dose so im extra pissed about this. The fact they went behind my back to talk to my husband like that is fucking disgusting and slimy as hell... sorry kind of a unhinged rant but yea this sucks.

Happy since its the longest ive gone without sezuires(used to have alot of focals a day) but not excited to tell my Nero and have my keppra increased. I dont feel any "keppra rage" intell my already intense before meds pms kicks in. Really hoping meds work for me but my condition (pvnh) is well known for being med resistant. Feel really down and worried nothing might work for me and ive looked up and down for people with my condition that successfully controlled there serzuires just in general and failed.

I have sezuires and im spooked. Had half a plate of noodles I was told was gluten free which they stopped me halfway and told me there was a mistake.

Got diagnosed about a month ago and started taking keppra i havent had a "bad" one yet(happens monthly where ill have intense focal clusters the day before my period, so idk if it will even happen yet) apparently blinking a ton/sudden memory issues can be focals lol. Im used to "sudden most intense fear of your life" ahh type focals. Anyway going to ask for a 3 day emg thingy to make sure its not that ive been having atleast a dozen focals a day or if its just keppra side effects. Hopefully just keppra side effects but im not sure.

So ive been on keppra for like 3 weeks now. I already had intense pms, but this is another level. Was completely fine even after my increase(went from 500 to 750) other then weird dreams. But today I woke up(usasuly day 1 of my pms starting) and I have been irrationally annoyed at everything.

So for the last 2 years my downstairs was nearly completely numb/had random pain. Apparently i was just dealing with nearly constant focal sezuires. Even so I still would give my husband a hand atleast once a day(which i liked and didnt mind doing at all) but now that im on keppra(anti sezuire drug) I suddenly have ALL the feeling back and the rare but very real side effect of increased libido. When I expressed this to him and asked him if he could do similar stuff for me he acted almost annoyed and uninterested?... like couldn't look at me tried to walk away multpie times and just a monotone voice. I thought he would be happy it would be back, that treatment has been successful and actually gave me something I lost back. When he does do stuff with me he acts uninterested or tired till its stuff for him? He never had this issue at the beginning of the relationship(5 years ago now) or when I switched to just mainly doing stuff for him. Im confused and hurt right now honestly...

So i just started taking keppra 2 days ago, feel fine other then headaches/twiching in legs when im trying to sleep. I had focal awares alot apparently (mistaken for anxiety for years) and they have seemed to stop for the most part. Does b12 really help

Been on keppra for 2 days now due to having a ton of focal sezuires due to pvnh.(super rare brain issue like 2000 people in the world have it rare) Just realizing that it wasnt anxiety at all and just consistent sezuires. My random severe "panic attacks" that happen every day atleast once hasn't happened ethier. Haven't had a random crying episode ethier??? Like before i took my first dose of keppra I cried so much since I was so scared of meds?? Now thats just gone nearly entirely? Sorry this is just a completely wild experience for me, really happy to know that "anxiety" wasn't normal that I was living with my whole life.

So he was originally going to start me on keppra but then changed his mind to vimpat. But from what ive read is you shouldn't take it if you've had kidney/heart problems? I've had several kidney infections that resulted in cysts and ive had numerous hesrt palpitations since I was anemic?? Tempted to just do keppra instead honestly.

So i have maybe eaten 500 caloires MAX in the last 5 days combined. Not due to a ed or anything btw im just so nauseated all the time. Any recommendations on what to do? This episode has been going on for 2 weeks now and ive lost over 10 pounds...

Docter barely told me anything, appointment is in 2 days(last one was 2 weeks ago to dignose me) ive lost 10 pounds and have been sleeping still but unevenly. Like slept till 4 yesterday(in the evening) now its 4 in the morning. No sleep yet just relentless anxiety and likely a couple focals but im so stressed out I cant tell. Been feeling like im going to vomit ever since my dignose 2 weeks ago. Please help. Im so scared.

So i was just diagnosed with epilepsy, my main trigger is apparently stress. My main foundation before that was that "anxiety cant hurt you" so it'd help any panic attacks or anxiety attacks back then, but now I know it can very much hurt me indeed. How am I supposed to cope with this? Please help i need it so bad. :(

Curious on peoples personal wins with starting medication/surgery. Been trying to stay positive during this awkward period of being newly diagnosed.

So I have focal awares right now(no TCs that of know of) but just in case whats some heads up or tips for my partner and for me to try to do?

Still waiting for a exact reason. (Just brain structure issue heres med ill explain it next month) Doesn't help my period is several days late for me now aswell(my highest point of anxiety, its also unusual for me for it to be this late, wouldn't be shocked if its due to stress) keep randomly feeling sick over the anxiety of it

I have them now,(got them 3 days ago) as I was diagnosed with focal aware type sezuires. I only get them around my period.(which is haven't even been able to tell them) Which even then it doesnt always happen. Im scared if I start them it will become TCs instead or worse. Still having a really hard time wrapping my head around the "oh those random out of nowhere 'panic attacks' were sezuires." I did the mistake of researching it thinking well science has advanced alot and my little brother grew out of his since puberty hit so I should have good odds right? I dont know im so lost and grieving honestly. I didnt even get a emg, they just did a mri and said my brain was "structurely wrong and is know to cause small sezuires" then they just sent meds without saying anything else?? Said they'd explain in detail atleast but the appointment is over a month away. :(