I'm 20 years old. When I was about 6 or 7 I was diagnosed with partial complex seizure disorder and epilepsy. My seizures never got that bad that I remember, my mom never put me on medication because she always told me the side effects were really bad. I've been told it can cause death and even worse seizures. My whole life I would get random muscle spasms and twitches, I easily lose focus, bright lights give me severe headaches, ones so bad I can't see and I'd get minor spasms in my face and arms. Whenever I get under stress or overly excited, I'd start to twitch and get spasms in random places of my body. Typically they'd last a few seconds to a few minutes at the most. Well, when I was 18 I slipped in my shower and hit my back an inch away from my spine, on the facet. Worse pain I had ever been through. I didn't go to the hospital right away, I didn't have insurance. I tried to avoid the hospital as much as possible even when the pain was getting worse. A few days after hitting my back I started getting this pain in my back like all the muscles and my entire back would tense up and I couldn't move, along with serious pain. The pain got worse and worse everyday to the point I was screaming and crying because I couldn't handle it. My mom took me to the hospital. They gave me some meds. and Just said these are muscle spasms that I'm going through, I ''probably'' ruined the alignment in my back and it should heal over time. It didn't. It got worse and worse, I've suffered from HOUR LONG spasms for the past few years and they keep getting worse. I've seen 2 other doctors since the ER, both have told me there is nothing that can be done, that I have to let my body heal on it's own. The pain has got so bad that I barely get sleep, I get the spasms so often. Sometimes they only last a few minutes with no pain and other times they last an entire night. I get random spasms EVERYWHERE. Literally from my eyelid to my toes. They last a few seconds to a few minutes in random areas, but the over all time the spasms everywhere don't go away for hours at a time. I've tried seeing a neurologist and I got an MRI. The guy I saw was very disrespectful and mean, apparently in my MRI it shows nothing wrong with me and he said I can't be having spasms because my MRI is clear of anything. I end up screaming and crying from the pain of these spasms, so I can't understand how it shows my MRI clear of anything. WHen I get the spasms, sometimes I can't breathe. My lungs feel constricted, I feel dizzy and it's got really bad at times I can't speak. I don't know how to explain it, like last night I was laying in bed trying to relax because I was having spasms in my legs. I was watching tv and all of the sudden my mind went blank, I could see the tv but I mentally couldn't understand what was being said, i started feeling light headed and I couldn't breathe very well and when I tried to talk I couldn't form words. I started getting really choked up and I wanted to scream but I couldn't, I started getting anxiety. This happens a lot when I get spasms. Sometimes I just blank out for a few seconds to minutes, where I don't even know where I am or who I'm with and I snap back and I feel sick and like I want to throw up. I don't know what to do, I'm scared because I don't understand why the doctors I've seen just tell me nothing can be done and this doesn't seem normal.
Just the spasms, alone, sound more like a muscular problem than a seizure, however, the other symptoms you've mentioned - difficulty breathing, speech paralysis, increased levels of anxiety - sound *exactly* like the symptoms I have when I have my petit mal seizures. The only difference, is that I tend to hallucinate at the same time ... I see two different realities - one that is the actual reality, and somehow superimposed over it I see another place ... always a ferris wheel.
Blanking out completely is also a symptom of petit mal seizures..
Did you have only an MRI or did you have an EEG? An MRI wouldn't show epilepsy ... I've had several and not once has it detected that I'm epileptic. An EEG, however, is a more accurate test, but even that doesn't always show epilepsy in adults. As a matter of fact, if not for my obvious grand mal seizures and the fact that I tested positive for epilepsy when I was five, my last EEG would have said that I was completely normal.
I'ts unfortunate that you have to deal with a neurologist who is so uncaring about your problems ... I've been through a few of those, myself. If you can, see a different neurologist ... see many different neurologists until you find someone who actually gives a damn. Some doctors can be ignorant of a problem when they can't see the symptoms physically.
Thank you so much for answering this! The info you gave has helped a lot! I've only known of getting the EEG when I was little. When I had to stay up all night then the neurologist had me sleep over there and they had me hooked up to some machine and i guess it was a sleep test? This is when I was told I had the epilepsy and partial complex seizure disorder is all I know. The only problem with finding a different neurologist where I live is my insurance. I live in Utah and I have medicaid and medicare for medication. The neurologist I went to, I had to travel 40 minutes from where I live, he's the only one I know of around here that accepts my insurance. I'd have to go to Salt Lake to see anyone else (what I was told by my family doctor) for another to accept my insurance and Salt Lake is 5 hours away from where I live, so Idk what I'm going to do.
it's weird because, when I get under stress, or really happy or when I get anxiety flare ups (I have social anxiety) my body starts spasing and twitching more. Before I hit my back, It was like that just not as intense. Idk if hitting my back has caused more problems for the epilepsy or what, but it's terrible. The only thing I can think of doing at this point is trying to just take a bus up to Salt Lake because my spasms have got so much worse over time. The spasing FINALLY stopped after 4 days, i'm getting minor spasms in other places, even right now as I'm typing. And I apologize for taking so long to respond to this, i've been in bed for days because of the pain I've been going through. But I really appreciate you taking the time you taking to write what you did! :)