beanshippymom
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I am a 31 year old female. In the past I have had 2 seizures following head injuries (flipped backwards on a swing when I was 12 and there wasn't much sand on top of the cement pad. Second time was when I was 20 and the hydraulic arms on the hatchback trunk failed and I was hit in the head with the trunk latch) and 1 following a very high fever when I had TSS. Between the time I was 20 until about 28 I had really strange "episodes" of feeling dissociation, this weird electric feeling in my body and this intense blackness peppered with sparkles that came from "behind" my head. I thought I was having "black outs" or "fainting" spells because I was also sick without diagnosed condition. During these episodes the electrical feeling would become so intense that the only way to "stop" for passing out and losing hours of time was to find something to hold onto and focus with all my might. During this I'd have this weird breathing thing going out like when you take a big breath of cold air and your lungs spasm. I went to the doctor a bazillion times about this problem and my others and eventually I was diagnosed with celiac disease. I went gluten-free from age 25 on but the episodes still continued but less and less frequently until they mostly went away. Then my depressed husband became violent and I became depressed and anxious all the time the episodes started up again. I started getting really stressed out and they'd come back. This time I had people around to witness what happened when I "blacked out" and they described me as doing a weird moaning grunt noise - like "ehhhhhhhhhhhn eehhhhhhn" from my throat, stiff arms and legs, clenching and unclenching my jaw. I went to the ER a few times after it happened but because I was being treated for depression and anxiety they never once tested me for anything/ They just told me I needed to calm down and would try to prescribe more anxiety medication like lorazapam. I couldn't take that because it made me feel like I couldn't breath which doesn't help when you are trying to take it because you are "anxious." During this time period I was also prescribe a sleeping pill. This triggered what I called restless leg syndrome. It would feel ike this electrical shock building and building and building in my legs and then my legs would start twitching and jerking and going stiff like crazy. I stopped the medication because it was becoming so bad that it was making me nauseated (the feeling of electricity in my legs) but ever since then I still get that feeling when I am trying to fall asleep and I am really tired of it I am sick it will happen through the day when I am resting. Once I left my abusive husband and my stress disappeared the fainting did too. So I thought the doctors were right.
Then I got pregnant and when I was 12 weeks pregnant I started getting those episodes again only way more intense. Suddenly I wouldn't know if I was awake or not or how I had gotten to where I was. I'd feel really panicked and scared but I wouldn't be able to get up or move and then the darkness would start coming in, the lung quivers (take really quick short breaths of air but I didn't feel I could breath any in before my lungs pushed it out.) If I was sitting and I could get my arms to move (they'd feel so heavy!) and touch something cold and "focus" the blackness would peak to where I was totally blind with blackness and sparkles but I wouldn't lose consciousness. But because I was pregnant when people saw me in this condition they would "touch" me because I wasn't' responsive and I looked like there was something going on and then I would feel that electrical shock and poof I'd pass out. After this would happen, which was a lot at home, my boyfriend would have the hardest time bringing me back and I felt so sick and gross all day and like I was "dreaming." The first time it happened was at work where we have security footage because my boss wanted me to see how lucky I was a customer caught me or I would have hit my head off of some hooks to hang merchandise. My memory of the day was I had it happen, was I got to work, cleaned some kennels out and went to the cash and served once customer. To me that was a whole 45 minutes of time since I had gotten to work. When I was making change for the customer I was having a hard time seeing. I can't even explain why, I just couldn't see - like focus or something. I started feeling really neauseated and was worried I was going to throw up behind the cash so I went to tell my boss I need to use the bathroom. I got around the counter and I couldn't walk anymore because my whole body was buzzing, I could no longer see, the lung thing was happening and I was trying to say "help me". A woman said "ma'am are you ok? and I managed to breathe out the words no...." I blacked out to a dream world for a few seconds woke up to the boss on the phone talking to 911 and telling them I was finally awake and they started asking me questions about my pregnancy, my age, and repeating the same questions, then the ambulance showed up, I was cleared at the doctors (wasn't checked, told that I was just pregnant and that happens and it was low blood pressure) and sent home. In my mind I was at work for maybe 20 minutes after it happened. But apparently you can see the episode begin where I am confused and having a hard time seeing about 3 minutes before I even notice I am having problems. Then you see me realize and leave the cash to walk to my boss (I thought I was going to be sick so I went to tell him I needed to leave ASAP) and that's when the customer noticed me struggling to move and talk. After she touched me I was out for a whole 45 minutes!!!!!!!!!!!! You can see me sort of responding - like coming in and out of consciousness. Then the ambulance shows up as I am finally coming to for real and being confused whY I was at work because I could have sworn I was in bed at home and then everything coming back slowly. I was exhausted and tired for 2 days after wards like I had gone skiing or something and I continued having these episodes until I had my son thinking I was just having episodes of low blood pressure.
Fast forward to now. My son is 14 months old now and has been having "episodes" of unresponsiveness. They are short but so weird. I have early childhood education background focusing on toddlers specifically and I have never witnessed what my son does. Ever since he has been born he has done weird twitching that can last up to 2 and a half minutes once he is asleep - not while falling asleep. He has them while sleeping but they are lowing their frequency. He has been ill the last few days and this morning he woke up with this small in diameter but fairly popped out goose egg on his head. During the night the last few nights he's been waking up doing this thing he does when he is teething. He lets out these weird cries and writhes around in his sleep, I try with all my might to wake him but he just keeps arching his back, and putting his arms out and then eventually he relaxes and goes back to restful sleep. I brought this up to his doctor who said he was just having nightmares and was a deep sleeper.
BUT - after seeing a youtube video everything dawned on me. I just looked up online if you could be conscious during seizures and you can be and I had no clue. My blackouts might actually be seizures and my sons "nightmares in deepsleep" could be seizures? I'm Canadian, how the heck do I get my doctor to listen to my concerns.
I also had a sister who was born with all sorts of severe deformities and the lobes in her brain didn't form properly. She had all sorts of seizures I witnessed (I never thought until now that they could be seizures because they resemble NOTHING I witnessed as a child) and sadly her condition was terminal and she passed. She was born in 1990 when all that testing wasn't that great and she never got an official diagnosis. I had genetic testing for separate genetic disorder that runs in my family and during that consult I was told she may have had Turner's Syndrome but it was so hard to say because it was 18 years ago.
THanks for reading my novel
Then I got pregnant and when I was 12 weeks pregnant I started getting those episodes again only way more intense. Suddenly I wouldn't know if I was awake or not or how I had gotten to where I was. I'd feel really panicked and scared but I wouldn't be able to get up or move and then the darkness would start coming in, the lung quivers (take really quick short breaths of air but I didn't feel I could breath any in before my lungs pushed it out.) If I was sitting and I could get my arms to move (they'd feel so heavy!) and touch something cold and "focus" the blackness would peak to where I was totally blind with blackness and sparkles but I wouldn't lose consciousness. But because I was pregnant when people saw me in this condition they would "touch" me because I wasn't' responsive and I looked like there was something going on and then I would feel that electrical shock and poof I'd pass out. After this would happen, which was a lot at home, my boyfriend would have the hardest time bringing me back and I felt so sick and gross all day and like I was "dreaming." The first time it happened was at work where we have security footage because my boss wanted me to see how lucky I was a customer caught me or I would have hit my head off of some hooks to hang merchandise. My memory of the day was I had it happen, was I got to work, cleaned some kennels out and went to the cash and served once customer. To me that was a whole 45 minutes of time since I had gotten to work. When I was making change for the customer I was having a hard time seeing. I can't even explain why, I just couldn't see - like focus or something. I started feeling really neauseated and was worried I was going to throw up behind the cash so I went to tell my boss I need to use the bathroom. I got around the counter and I couldn't walk anymore because my whole body was buzzing, I could no longer see, the lung thing was happening and I was trying to say "help me". A woman said "ma'am are you ok? and I managed to breathe out the words no...." I blacked out to a dream world for a few seconds woke up to the boss on the phone talking to 911 and telling them I was finally awake and they started asking me questions about my pregnancy, my age, and repeating the same questions, then the ambulance showed up, I was cleared at the doctors (wasn't checked, told that I was just pregnant and that happens and it was low blood pressure) and sent home. In my mind I was at work for maybe 20 minutes after it happened. But apparently you can see the episode begin where I am confused and having a hard time seeing about 3 minutes before I even notice I am having problems. Then you see me realize and leave the cash to walk to my boss (I thought I was going to be sick so I went to tell him I needed to leave ASAP) and that's when the customer noticed me struggling to move and talk. After she touched me I was out for a whole 45 minutes!!!!!!!!!!!! You can see me sort of responding - like coming in and out of consciousness. Then the ambulance shows up as I am finally coming to for real and being confused whY I was at work because I could have sworn I was in bed at home and then everything coming back slowly. I was exhausted and tired for 2 days after wards like I had gone skiing or something and I continued having these episodes until I had my son thinking I was just having episodes of low blood pressure.
Fast forward to now. My son is 14 months old now and has been having "episodes" of unresponsiveness. They are short but so weird. I have early childhood education background focusing on toddlers specifically and I have never witnessed what my son does. Ever since he has been born he has done weird twitching that can last up to 2 and a half minutes once he is asleep - not while falling asleep. He has them while sleeping but they are lowing their frequency. He has been ill the last few days and this morning he woke up with this small in diameter but fairly popped out goose egg on his head. During the night the last few nights he's been waking up doing this thing he does when he is teething. He lets out these weird cries and writhes around in his sleep, I try with all my might to wake him but he just keeps arching his back, and putting his arms out and then eventually he relaxes and goes back to restful sleep. I brought this up to his doctor who said he was just having nightmares and was a deep sleeper.
BUT - after seeing a youtube video everything dawned on me. I just looked up online if you could be conscious during seizures and you can be and I had no clue. My blackouts might actually be seizures and my sons "nightmares in deepsleep" could be seizures? I'm Canadian, how the heck do I get my doctor to listen to my concerns.
I also had a sister who was born with all sorts of severe deformities and the lobes in her brain didn't form properly. She had all sorts of seizures I witnessed (I never thought until now that they could be seizures because they resemble NOTHING I witnessed as a child) and sadly her condition was terminal and she passed. She was born in 1990 when all that testing wasn't that great and she never got an official diagnosis. I had genetic testing for separate genetic disorder that runs in my family and during that consult I was told she may have had Turner's Syndrome but it was so hard to say because it was 18 years ago.
THanks for reading my novel
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