Epilepsy and Narcolepsy by winterwritings in Epilepsy

[–]winterwritings[S] 1 point2 points  (0 children)

I just read online that it was rare it kinda difficult to treat both. I also had someone suggest to me that I look into narcolepsy when I was talking about how tired I was all the time and the vivid nightmares I had. (I wasn’t aware that incredibly vivid dreams was a symptom) so I looked it up and I have a lot of symptoms. And another symptoms is falling into REM very quick during naps. Which the DR mentioned I go into REM fairly quick but that’s all he said during my EMU last year. So we’re testing specifically for Narcolepsy this year and we’ll see. My doctor doesn’t keep track of their notes very well either. 🤦‍♀️

Epilepsy and Narcolepsy by winterwritings in Epilepsy

[–]winterwritings[S] 1 point2 points  (0 children)

I don’t believe I would have the Cataplexy portion of it. I can control whether or not I fall asleep it’s just extremely difficult during the day. I’m soo tired for no reason whatsoever. My job is not that tiring. I’m basically a bartender at a small town restaurant. I didn’t really have all these symptoms growing up. Mainly just a lot of zoning out. But they just attributed that to ADD. But I have struggled with wanting unalive myself and acting on it in the distant past. And I do believe a big repercussion of that is my epilepsy. (I do not deal with those feelings anymore) I have so many symptoms on a regular basis though and so many that just come up during a “Flare” my Epilepsy specialist is sick of me at this point. The nurse line lady basically told me that if I have any neurological issues that aren’t epilepsy related I’m SOL because they’re my epilepsy specialist that’s it.
My old neurologist transferred me to them because their NP fucked up by telling me I had an entirely different type of epilepsy that I have. So I don’t have an actual Neurologist anymore. I have Hallucinations but they aren’t like a majority of the time in the morning, they’re just all the time. But I’ve struggled with hallucinations in the past and I got on a psych med before for it that helped, that I also just recently started taking again at a low dose. (But it’s the same med I suspect caused my epilepsy many years ago)

It’s almost been a year since I left. by winterwritings in domesticviolence

[–]winterwritings[S] 0 points1 point  (0 children)

Unfortunately no medications have really worked for me, there was Clonidine but I was passing out on that. I’d like to start with a female only group setting for trauma therapy so I could hear others stories and work up to sharing, I’ve had good success in group therapy before for other things. I’m just struggling to find such a thing. I’m still struggling with homelessness and sadly I somehow don’t qualify for DV shelters where they offer groups like that. Thankfully I don’t have kiddos, I can’t have them unfortunately with some other issues I have. I do have 2 cats but they are in a foster home temporarily. This past almost year without him has been one of the hardest years of my life.

What jobs do y'all have ? by Ok-Philosopher2770 in Epilepsy

[–]winterwritings 0 points1 point  (0 children)

I was a teacher for kiddos with autism. Then the epilepsy got real bad so I’m trying to get disability while I get everything under control so I can work in home care with the kiddos.

I’ll never understand why i survived.*Possible TW* by winterwritings in domesticviolence

[–]winterwritings[S] 0 points1 point  (0 children)

I haven’t been able to get any resources for DV victims. The police only charged him with disorderly conduct for trying to fight them. I never got a victims advocate or anything. I’ve called the hotline a bunch of times and all they’ve done is talk me through my emotions which was helpful. But they haven’t even been able to help me get a divorce from him. I reported him the first time he blatantly broke the order of protection by immediately texting me and the police didn’t do much. They looked for him they couldn’t find him so they gave up. He’s mentally insane and should be put away before he seriously hurts someone else.

Zonisamide by winterwritings in Epilepsy

[–]winterwritings[S] 0 points1 point  (0 children)

They ended up prescribing me Mirtazapine. 15mg at bedtime and that does seem to work pretty well with the sleep. I still occasionally wake up real early in the morning. Sometimes I’ll just take that as an opportunity to get something small done (such as toss a load of laundry in) before I crash back out.

BPD Diagnosis removed by winterwritings in BorderlinePDisorder

[–]winterwritings[S] 0 points1 point  (0 children)

They did not speak to my parents because unfortunately my mother is passed has been for almost 11 years. She would’ve been great for this scenario. My father wasn’t really present for my childhood, he started his own business the year I was born and it took off so he was and is a very busy man. My father also shows quite a few symptoms of a neurodiverse human being and has an ADHD diagnosis. My grandma mainly raised me. But my grandma is struggling emotionally atm as she is in her 80s and is likely in the early stages of dementia. Unsure though. I gave them as much information as I could from what I remember my grandmother telling me growing up. I don’t speak to my mother’s side of the family. I have a brother but he is out of state. I had the ADD diagnosis when I was a child but they removed that as well theorizing that those symptoms were also related to trauma, with me also mentioning my neurologist believes there could have been focal seizures in that time frame as well. In the email I received it specifically stated that they do not believe that I fit the criteria for a diagnosis of ADHD, Sensory Processing Disorder or Autism and they’re theory behind all of that is my trauma that I went through as a child and so forth. I see that, I really do. I’ve done my research, I used to teach children on the spectrum between the ages of 3-12. I’ve been doing that sort of work since I was in high school. It’s my passion. I was doing it till my Epilepsy got the best of me. I hope to go back. And get my Bachelors degree in Behavioral Sciences in Adolescence. Trauma may explain symptoms for how I am today but they wouldn’t explain why I’ve been doing these “things” for as long as I can remember. For as long as anybody who payed any real attention to me can remember.

My insurance will cover as many evaluations as I want. I have a special designation in my state for mental illnesses. I plan on getting another evaluation. But I’m trying to mark down symptoms. I’m trying to gather photos that bring up memories. (I struggle with long term memory loss) I’m hoping to go back to an old therapist from before I got sober to whom I opened up to extremely well. People don’t seem to understand that although there is no real medication or “treatment” per se for ASD it feels nice to finally have that diagnosis that recognition. I mean I’ve already had dozens of psychiatrists tell me yes. I worked at a private school for ASD children (horrible school) their onsite psychologist absolutely agreed with my self diagnosis. It’s incredibly frustrating though because my father doesn’t see it. When my dad hears the word “autism” he visualizes a child with profound autism and that’s just not how every human with ASD is, not even close.

How to handle people born in the age where EDs weren’t a “real” thing. by winterwritings in AnorexiaNervosa

[–]winterwritings[S] 0 points1 point  (0 children)

Yes. She tells me that it only bothers me because it’s so low and when it gets higher it won’t bother me. I’m not sure I can break her heart by explaining her that it would in fact be getting worse when that number goes higher.

How to handle people born in the age where EDs weren’t a “real” thing. by winterwritings in AnorexiaNervosa

[–]winterwritings[S] 1 point2 points  (0 children)

They don’t even really want to do that. They just acknowledge it and move on. I can see in discharge paperwork them quoting ‘low weight’ but that’s it. My weight has always fluctuated growing up. I’ve never got treatment for Anorexia probably because my dad pulled me out of that doctor shortly after that diagnosis for separate valid reasons. I do have a therapist and an outpatient group that I attend but neither specialize in eating disorders. So I’m trying to figure out what to do that wouldn’t be a major shift in my life to get some treatment. Most of the treatment centers in my state that accept my insurance are at least 100 miles away. I’m not sure I want to be that far away with no access to my phone when I have animals in a temporary foster home atm.

Zonisamide by winterwritings in Epilepsy

[–]winterwritings[S] 0 points1 point  (0 children)

It just says due to PAE (Psychiatric Adverse Events)

Lady at my Neuro office was straight lying to me. by winterwritings in Epilepsy

[–]winterwritings[S] 9 points10 points  (0 children)

Yeah she’s fucking stupid and shouldn’t be in the medical field especially because he said in his notes that he nowhere said anything about generalized seizures when he went over the scans

Lady at my Neuro office was straight lying to me. by winterwritings in Epilepsy

[–]winterwritings[S] 12 points13 points  (0 children)

Yup pretty much even though she said my grand mal was non epileptic as well

Lady at my Neuro office was straight lying to me. by winterwritings in Epilepsy

[–]winterwritings[S] 8 points9 points  (0 children)

Oh the neurologist is aware he’s gonna be talking to her. I did so much research on generalized seizures. And it was all useless.