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Auras, startle response, crazy dreams... familiar?

Sat, 06/03/2017 - 03:24
So, I have an appointment coming up with a neuro. It's a waiting game as always. I'm 27, female and still don't understand what's been going on with me for most of my life. My retina specialist diagnosed me with auras without migraines/head pain last month because I recently started having temporary holes in my vision, floaters, sparkler like flashes. That, and like buzz zappy feeling horsefly bite sensations on the right side of my neck. For longer I've had bad dreams and episodic hallucinations and abdominal and pelvic pain. I don't know if it's psychiatric, seizures, hormonal imbalance, or whatever. It gets worse when I'm ill rested or stressed or near my cycle (which is abt every other 10 days to 2 weeks). & I've had a very stressful year... So maybe I'm hoping someone who reads this, can recognize a similar experience they've had with epilepsy, non epileptic seizures, or a sleep disorder. See also: pelvic pain. And, it's a lot to go a bunch of new doctor appointments and you don't know where to start. Here are issues that I'm currently experiencing or also have experienced in the past. You're an angel if you make it to the bottom, laugh out loud. Photosensitivity; Long term problem. I have transition lenses and that's helping. When I was a kid (up to ~8 or 9) I couldn't open the fridge in the morning to make cereal because the light hurt my eyes too much. My mom haaaated me waking her up to make cereal. But I'd be crying. Vision; I've had bifocals since I was 13 and I was friggin blind. One side my eye muscle gets tired faster than the other so they don't focus together well for long when strained. It got a lot worse from the fall before last, which was another reason my eye doctor referred me to the retina specialist. Nightmares; I have very scary detailed dreams. Often I'm running or being chased and feel scared. I could write pages long detailed about those dreams weeks or years after I had them. I remember dreams from young childhood even, vividly. Like I can replay them in my head as if they were video tapes. Sometimes I can't picture it or remember what they were about but have a vague sense of what they were about. It feels like I know but can't put into words. Fatigue/Sleep quality; Sometimes I wake up and am so tired I physically can't get up or move. Lead. Dead weight. And go right back into nightmares. And I'll know it's a dream and I'll try to actively change what's happening but it'll get warped into something newly terrifying. And I can't escape the dream or force myself to wake up. In the morning the cycle intensifies each time I don't successfully wake. This has been a long term problem since adolescence. In college I couldn't stay awake when we dimmed lights and put on movies. I'd struggle so hard to stay awake and wake myself up but I could not fight it. Sleep behaviors: I wake my partner up talking or yelling or shoving. I have nightmares 1-3 times a week. I'll talk in my sleep, per partners and parents. It's either trauma NO NOs or gibberish. I'll wake up and cry and shake. I'm pretty difficult to wake up for someone who wakes up through the night, but according to my Fitbit I apparently wake up more than I remember. I'd answer the phone half awake and have full conversations when I was 22-23... sometimes I'd make sense and sometimes not. When it got mentioned back to me the next day or weeks later I'd still remember it happening but at the time I didn't think it had actually happened? Hallucinations; when I was 6 I hallucinated a "future" ghost of my infant brother walking by my mother. when I was around 14-16 I started having strange experiences more frequently; one notable was that I was paralyzed on my bed unable to move and saw a shadowy figure in a hat slowly creep out of my closet with a knife and I cried on the bed begging in my head that he doesn't stab me. When I was 21 I was driving to a friend's in Lansing from Detroit and rush hour was starting- I was super sleep deprived from working so much but it didn't feel like I fell asleep/woke up. It looked like the view morphed into a cartoon, red to purple to blue to dark violet sky will clouds that started rolling from the horizon down the freeway, over the cars like waves. Sometimes I get bugs (briefly) or shadows in windows. When I was 24 I briefly hallucinated a man who'd previously hurt me following me. 23-26 I'd occasionally hear my radio play when it was off, it's like vague music and I can't describe it but I know what it means/sometimes it has a message. Recently I've been getting metal smells along with the auras. Mental health/Startle Response; I also have PTSD. I have flashback nightmares. I jerk easily when I'm surprised, touch, sound, peripheral movement. Though, I've always been like that so I don't know if it's PTSD related exactly. I've been treated for anxiety, depression, mood disorder since I was 13... my only successful med combination was ever abilify and lamictal. I've never been diagnosed with schizophrenia... bipolar/mood disorder with psychotic features once or twice. I get the can't get out of bed for weeks except for work lows and the only need to sleep 7 hours in a week high. A few years ago a therapist said she wasn't sure if it was a mood disorder or trauma, two years ago my official diagnosis was changed to PTSD primary and mood disorder NOS secondary. I especially get very mood swingy when I'm in pain. I feel bad for how I talk to nurses sometimes, kind of mood swings. My period pains are horrific- pass clots half the size of oysters, pass 3/4 cup of blood over 10 days, muscle spasm in my pelvis, low back, thighs, even up in my shoulders- I dry heave and puke and sob and sometimes get combative. I have PCOS but this year I've had three events from side pain (on the right side, they checked my gallbladder and appendix) were I went to the hospital; I'd get cold, goose flesh, nauseous, vomit. I never experienced that kind of pain before but there was so apparent reason for it in scans. Misc; I was diagnosed with GERD when I was 14/15. My mom had FAP so I get yearly colon/endoscopies to detect and remove polyps before they become cancerous. I've had a hiatal (paraesophageal) hernia since then. I am a HUGE snorer so maybe I have sleep apnea or something (no strong feeling I do, flippant remark). I have problems with word recall sometimes; if I can't remember the word for something I'm thinking of I have to describe it. I called a ladle the soup making device. I had severe ear infections as a kid, surgery on tubes and adenoids after an ear drum ruptured. My balance/gait is a lil off from the ear issues and overuse injuries. My personal trainer couldn't figure out why one side of my body was so much weaker than the other, and told me to go to the doctor about it a few years ago. I have some hip mobility and pelvic stability issues I'm having taken care of at the moment as well. So. That's what I'm working with. Does it ring a bell for anyone else?

Comments

I would try to see if you can

Submitted by Epilepsy_Warrior on Thu, 2017-08-10 - 21:33
I would try to see if you can get seen by an epileptologist. Neurologists usually never know what the hell they're doing. See what your neurologist says and if you aren't satisfied I would begin looking into epileptologists in your region! 

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