hi. ive been suffering petit mal for ages. i guess since i was 14. im now 18 and recently had two grand mal seizures three weeks apart. the last being only a week ago.
I'd like to describe both the petit and the grand mal just to see if any of you had the near-exact same experiences.
i'm booked into a neurologist btw (what a wait that has turned out to be---3mths+), so pls dont reply with an "online-diagnosis isn't what we're here for", coz it isn't what i'm here for. i'm just pretty scared about it all right now and until i see the neuro i'm hoping this will help me "cope".
so here goes:
I guess the petit mal's aren't that bad, they're constant but less demanding. sure i'll blank out and sometimes fall over but without any serious spasms or concussion-like-onset. so usually i make a loud sort of noise, an odd yelp which is similar to tarzan - if that helps.
anyway so i'll either fall down or manage to keep standing but my head will bounce down unconsciously and a lot of the time the muscle in my right shoulder twitches and my entire face contracts into the ugliest, twisted forms. image-wise think: squinty, lopsided, snarling, nervous twitching, hooks pulling sideways on my lips in different directions All at once.
they're always different in length, sometimes really brief (8secs max) and it sounds like my voice broke and sometimes outrageously long (10-15secs max) and humiliating. i often just don't even know what to say, people are like "what the fuck was that" -- i just say shit i don't know, and make up something about heart problems and that noise because of "sharp pains in my chest" or something to cover up. hate lying
sometimes the petit mal are silent and i just get the brief contraction/brief unconscious blank out. once i blanked out and was sitting at the table eating weatbix and yeah... you can imagine the rest. milk, honey soggy bran face. haha (at home luckily).
anyway so they're pretty regular, reoccurring nearly everyday. the severity is different each time. sometimes several times a day.
ok and now the grand mal:
first time i was in an auditorium - my right eye started blinking ultra fast and i started turning my head to the right. i turned so far eventually my neck said no and i vaguely remembering standing so my head didn't twist off (naturally not logically) that's when i hit deck, fell backwards? not sure - was alone and no one there got a chance to tell me. i don't remember after that. i remember waking up again having an ambo team and a few people who were sitting around me were still there peering for all they were worth. but yeah my knees were swollen like golf balls and my face was puffed and red for a few days afterward.and supposedly i was really aggressive when i came to, really agitated, lashing out at the ambo ladies telling them to leave me alone and let me walk home or something crazy.
so hospitalised the doctor asked my mum (who came asap) if i was on drugs and seemed to think i was (i was wearing pretty flower power generation clothing -- cynical doctor haha) but i'm not. anyhow they were busy with really serious serious emegrency stuff so they just monitored my heart rate, injected me with something, put me on saline and yeah told us to call a neuro and left us in the dark mostly. thought it was just a one-off substance abuse thing. that's the worst. i don't do drugs. i did do weed for a bit but that's it. i was 13/14/15 but i stopped smoking it completely.
ohwell, it happened again 3 weeks after that. i was at home watching tv. same sitting down, start looking to the right then my right eye begins to blink ultra fast. this time i sort of tried to fight it and decided id better lie on the ground so i didnt fall. i guess i got halfway down and fell because i found later in the ER that my pinky was broken. woke up but wasn't aware/remembering anything coz i only started "realising" my surroundings when my sister came into the room, i was sitting at the couch like clicking or something and she was looking at me all funny saying are you ok? are you ok? (my face see it was all puffed/red blotchy again)
and i was half crying/not knowing what was going on at all but with feelings of complete terror , so i stuttered out "i'm scared. what's wrong? i dont know... what's wrong? why, what?" mass confusion i guess and awful fear. but i was still barely taking anything in. coz the next moment i was in my bed my mum sitting beside me, patting my back saying it's ok, calming me down. my sister was there, worried look on her face. i have no concept of time on this one and haven't really asked about it either (i will do now) so i'm not sure how long i lay down for but it couldn't have been longer than 30 minutes because when i was sort of better mum said I think you had another seizure, We're going to go to the hospital. Of course I was all "FUCK NO I HATE THE HOSPITAL IM NOT GOING" then 10 seconds later "YEAH let's go" coz it's basically the obvious thing to do. You feel so safe there. I accepted it was what I needed and we went.
Different doctor. He spoke to me this time. What a wank. we had the same name tho -- weird. Anyway he just said So this is your second, you're now not allowed to drive until we get word from the neuro.
But he was a wank coz he tried to talk to me about weed, saying over and over "It's ok mate everybody does it, so how often are you doing it"
I kept telling him honestly I don't, seriously I have but I don't he just kept on with the "It's ok, it's ok, i'm cool you can tell me, we're friends" shit.
Seriously that is the worst. Him thinking I was denying it. I'm honest. So that was patronising as hell. I'm drug free.
Well I've recently come off a never again one month trial of mirtazon/zyprexa. But they're not recreational. Didn't like the side effects (dry mouth 24/7)
I'm posting this because I'm freaking out about it. It gives me anxiety attacks and Im still getting the petit mal. I'm now in terror that whenever I look to my right I might not be able to gain control again and I will end up having another seizure (I'm avoiding looking that way as much as I can). I'm sometimes, actually often, convinced that I was just about to have one but I managed to ward it off and calm it away with diaphragmatic breathing and thinking about ... well sex mostly. It's a good distraction.
So that is my medical history. Say whatever you're thinking. opinions? judgements? Be nice, be truthful, share something, welcome me to the community. Advice even?
p.s. i know this is getting long-winded but do I need to mention how depressing this is. the humiliation and all. i'm hoping it's pointless because it's fucking awful
I'd like to describe both the petit and the grand mal just to see if any of you had the near-exact same experiences.
i'm booked into a neurologist btw (what a wait that has turned out to be---3mths+), so pls dont reply with an "online-diagnosis isn't what we're here for", coz it isn't what i'm here for. i'm just pretty scared about it all right now and until i see the neuro i'm hoping this will help me "cope".
so here goes:
I guess the petit mal's aren't that bad, they're constant but less demanding. sure i'll blank out and sometimes fall over but without any serious spasms or concussion-like-onset. so usually i make a loud sort of noise, an odd yelp which is similar to tarzan - if that helps.
anyway so i'll either fall down or manage to keep standing but my head will bounce down unconsciously and a lot of the time the muscle in my right shoulder twitches and my entire face contracts into the ugliest, twisted forms. image-wise think: squinty, lopsided, snarling, nervous twitching, hooks pulling sideways on my lips in different directions All at once.
they're always different in length, sometimes really brief (8secs max) and it sounds like my voice broke and sometimes outrageously long (10-15secs max) and humiliating. i often just don't even know what to say, people are like "what the fuck was that" -- i just say shit i don't know, and make up something about heart problems and that noise because of "sharp pains in my chest" or something to cover up. hate lying
sometimes the petit mal are silent and i just get the brief contraction/brief unconscious blank out. once i blanked out and was sitting at the table eating weatbix and yeah... you can imagine the rest. milk, honey soggy bran face. haha (at home luckily).
anyway so they're pretty regular, reoccurring nearly everyday. the severity is different each time. sometimes several times a day.
ok and now the grand mal:
first time i was in an auditorium - my right eye started blinking ultra fast and i started turning my head to the right. i turned so far eventually my neck said no and i vaguely remembering standing so my head didn't twist off (naturally not logically) that's when i hit deck, fell backwards? not sure - was alone and no one there got a chance to tell me. i don't remember after that. i remember waking up again having an ambo team and a few people who were sitting around me were still there peering for all they were worth. but yeah my knees were swollen like golf balls and my face was puffed and red for a few days afterward.and supposedly i was really aggressive when i came to, really agitated, lashing out at the ambo ladies telling them to leave me alone and let me walk home or something crazy.
so hospitalised the doctor asked my mum (who came asap) if i was on drugs and seemed to think i was (i was wearing pretty flower power generation clothing -- cynical doctor haha) but i'm not. anyhow they were busy with really serious serious emegrency stuff so they just monitored my heart rate, injected me with something, put me on saline and yeah told us to call a neuro and left us in the dark mostly. thought it was just a one-off substance abuse thing. that's the worst. i don't do drugs. i did do weed for a bit but that's it. i was 13/14/15 but i stopped smoking it completely.
ohwell, it happened again 3 weeks after that. i was at home watching tv. same sitting down, start looking to the right then my right eye begins to blink ultra fast. this time i sort of tried to fight it and decided id better lie on the ground so i didnt fall. i guess i got halfway down and fell because i found later in the ER that my pinky was broken. woke up but wasn't aware/remembering anything coz i only started "realising" my surroundings when my sister came into the room, i was sitting at the couch like clicking or something and she was looking at me all funny saying are you ok? are you ok? (my face see it was all puffed/red blotchy again)
and i was half crying/not knowing what was going on at all but with feelings of complete terror , so i stuttered out "i'm scared. what's wrong? i dont know... what's wrong? why, what?" mass confusion i guess and awful fear. but i was still barely taking anything in. coz the next moment i was in my bed my mum sitting beside me, patting my back saying it's ok, calming me down. my sister was there, worried look on her face. i have no concept of time on this one and haven't really asked about it either (i will do now) so i'm not sure how long i lay down for but it couldn't have been longer than 30 minutes because when i was sort of better mum said I think you had another seizure, We're going to go to the hospital. Of course I was all "FUCK NO I HATE THE HOSPITAL IM NOT GOING" then 10 seconds later "YEAH let's go" coz it's basically the obvious thing to do. You feel so safe there. I accepted it was what I needed and we went.
Different doctor. He spoke to me this time. What a wank. we had the same name tho -- weird. Anyway he just said So this is your second, you're now not allowed to drive until we get word from the neuro.
But he was a wank coz he tried to talk to me about weed, saying over and over "It's ok mate everybody does it, so how often are you doing it"
I kept telling him honestly I don't, seriously I have but I don't he just kept on with the "It's ok, it's ok, i'm cool you can tell me, we're friends" shit.
Seriously that is the worst. Him thinking I was denying it. I'm honest. So that was patronising as hell. I'm drug free.
Well I've recently come off a never again one month trial of mirtazon/zyprexa. But they're not recreational. Didn't like the side effects (dry mouth 24/7)
I'm posting this because I'm freaking out about it. It gives me anxiety attacks and Im still getting the petit mal. I'm now in terror that whenever I look to my right I might not be able to gain control again and I will end up having another seizure (I'm avoiding looking that way as much as I can). I'm sometimes, actually often, convinced that I was just about to have one but I managed to ward it off and calm it away with diaphragmatic breathing and thinking about ... well sex mostly. It's a good distraction.
So that is my medical history. Say whatever you're thinking. opinions? judgements? Be nice, be truthful, share something, welcome me to the community. Advice even?
p.s. i know this is getting long-winded but do I need to mention how depressing this is. the humiliation and all. i'm hoping it's pointless because it's fucking awful
