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I don't know what to do...

Wed, 05/27/2020 - 03:24
So this is probably going to be pretty long (sorry about that) but about a week ago I OD'ed on my medication (Topamax) and ever since then I've been experiencing these "seizures."It's kind of hard for me to describe them because I'm not actually seeing them ya know (Lol) but I've been told that it's a lot of jerking motions my head whips back and forth i groan i arch my back and sometimes there is leg peddling. It feels kinda like im being zapped if that makes sense? My aura is this really weird burning jittery sensation in my chest and left arm like my nerves are on fire. I also have this thing where my left hand kind of moves erratically. It looks like really aggressive piano playing almost like a tardive dyskinesia esc thing? And i also feel like I have to pee really had after episodes. The first one I have was about 2 hours after my OD ( which is Topamaxs' peak) i was not aware during it and apparently it lasted 5 min (my brother witnessed) and i also screamed during it. The next was about 5 hrs later and was about 3 min long. I was partially aware during that one. I was extremely groggy , dizzy , nauseous, and uncoordinated and my vision and hearing funked out for the next 3 days but no more seizures. On Saturday I had another one that again lasted 5 min and on Sunday I had one that was increasingly violent and 10 min long. My mom was really worried so she took me to the ER. The ER was extremely unhelpful and assumed because of the OD that my "seizures" are PNES instead caused by my anxiety. So they sent me home. Monday I woke up with more seizures but this time they were clustering. My first was 10 min (couldn't breathe during) then I had a 2 min break then had an 8 min seizure and then a 12 min one and so on and so forth. I thin the total was 4-5. My mom had to call an ambulance to come and get me to bring me to a different ER this time. They were even worse. They saw me convulsing and told me to stop as if it was something i could control, didn't even glance at me as i was convulsing and they didn't even put pads on the side rails of the bed i mean they were in the room just not on the bed. WTF right? They basically told me the same thing as the other ER; that it is PNES caused by my anxiety. They also tried to tell me that you have to be unconscious to be having a seizure. What about Focal seizures? or Myoclonic ones ya know? It was ridiculous. So they too sent me home and didn't even wheel me out which i am pretty sure it is protocol to wheel a patient that comes in with suspected seizures in and out of the hospital. I followed up with my PCP today who apparently just believes what she is told without question but with some prodding reluctantly gave me a referral to neurology. I just don't understand the obsession with PNES. I'm not even anxious i mean besides the fear of the seizures. I've been dong my own research into both epilepsy and PNES and it sounds more like epilepsy to me. One of the main reasons is that it exclusively happens when I sleep. within 1-2 hrs of me falling asleep is the only time I have the episodes. yuo don't have that with PNES. And my OD on topamax. like i said earlier, the meds peak is 2 hrs and like clockwork 2 hrs later it starts. that would be a HUGE coincidence. And both PNES and the theory that the topamax caused them can't be true at the same time. I'm not saying it is completely impossible that it is PNES ( I don't think it is) but you would think they would want to rule out seizures just to be safe you know? If they just brush it off like they are doing and it does turn out to be actual seizure then they are liable. None of this makes any sense to me. Whew. I know this is really long I'm sorry i just had to get all of this off my chest and maybe one of you can help me. Thanks for listening!


Hi, Thank you for posting, it

Submitted by Anonymous on Wed, 2020-05-27 - 09:14
Hi, Thank you for posting, it sounds like you’ve been through a lot. We are sorry to hear that you’ve had such negative experiences with some of the doctor's you’ve seen. We cannot determine if you’ve have epilepsy or PNES , so we are glad to hear that you have a referral to a neurologist, who can perform additional diagnostic testing to hopefully provide you with the answers you need and help determine what individual treatment plan may be best for you. Documenting how you’re feeling and these episodes you describe experiencing in detail, (like you’ve done in your post) and providing a thorough family history (if possible), will be very helpful to review with your healthcare team. My Seizure Diary can be used to organize your health issues, manage medications, other therapies, personal experiences and more. . To learn more about epilepsy & seizures, please visit: . It’s also important to note that not everyone that has seizures has Epilepsy. A person can have a seizure from a physical cause.This could be an acute medical illness or trauma that begins before the seizure. It could also be related to a substance or event their body is responding to or withdrawing from. In these cases, seizures are called “provoked”.There are also physical or medical events that may mimic or look like seizures and are not due to changes in electrical activity in the brain, often called nonepileptic events: . Additionally,you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance,and access to national and local resources. 1-800-332-1000,  

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