Alright so I got the dextroamphetamine and the modanifil and its okay but I sort of feel like it works so well it makes everything worse… I don’t have sleep attacks as often but now when I’m tired and think to take a planned nap to get some relief, I can’t. I feel like the insomnia is getting worse and I’m tired of living with a heart rate around 120 with a jumbled brain that can’t think!!
I heard they have walk-in services but is there anything I should know first? I need help with navigating disability in the workplace so will I need to bring some stuff in with me on Monday? I don’t even know if this is something I have to qualify for but I randomly heard that the service was available from someone in passing. If anyone has done this before, let me know what your experience was like!
I’ve posted on this sub before and yall have been so supportive but I still feel very lonely. I’m technically being treated for narcolepsy and I’m allowed to tell people I have it but my mslt results were really weird…
it took me SEVEN seconds to fall asleep for my first nap and zero for the others… but only because I never actually stopped sleeping…
I also found out I had very minor sleep apnea from the psg the night before (which is weird bc I was told no mslt could be done if ANY indication of sleep apnea was present). Regardless, my doctor said the hypersomnia was way beyond what minor sleep apnea would cause and got concerned because I told him I genuinely felt awake a few times during the parts where my brain waves indicated sleep. I let him know how miserable my mslt was because I did feel like I was in and out all day bc of severe sleep inertia but I also started to hallucinate a little too. He thought it was interesting but wasn’t sure why I had that experience. When I asked what my official diagnosis would be (because SO MANY people were begging to know what was wrong with me), he told me to “just tell people I had narcolepsy.” When I asked why he sounded so uncertain, he told it’s because while I fell asleep in record time, I never reached REM sleep at all during the day... So while yes I’m also on modanifil and dextroamphetamine and I tell people I do, I don’t actually have narcolepsy…
i honestly feel kind of cheated. I was on an ssri before I got tested and when I was told I had to stop all medications, I was a little skeptical when my doctor let me stay on the ssri. Yes it would’ve been hell without it but I wonder if things would be different… I already felt alone enough before the diagnosis but now I almost feel lonelier because it’s so hard to explain to people who don’t have narcolepsy but it’s also awkward talking about it with people who do. I experience plenty of the hallmark symptoms but there are some things that I don’t experience that folks with a verified diagnosis do and things that folks with a verified diagnosis don’t experience that I do. I know that narcolepsy can sort of act ok a spectrum but I feel like a fraud. It also doesn’t help that a lot of what I thought was normal life were actually all just symptoms so I still struggle to differentiate things like partial cataplexy from just a weird mental glitch from overthinking.
idk guys… I know it’s not that big of a deal since I was still able to get workplace accommodations and stuff but I just still feel like an outsider…
my doc gave me instructions when it came to driving and one of them was to pull over immediately if I feel tired while driving…
makes sense right?
so I did for the first time…
doc said it wouldnt be out of the ordinary if I was checked on by police or somethng but I have a medical paper in my wallet and the police should be somewhat familiar with the situation
but he didn’t say anything about intrusive wannabe heroes…
so I pull over and flip on my hazards and lock myself in my car to take a mini nap when all the sudden I head incessant knocking on my passenger window where a lady is yellinng to ask if I’m ok. I’m a little disoriented and before I can talk back she’s yelling at me to unlock my car and im an idiot so I start just pressing buttons on my car door and eventually unlock my car to which this random STRANGER gets into my car and starts asking me a million fucking questions and my head is mush and I’m trying to tell her to relax and that I know what’s going on. but she won’t let up. She had already asked if I needed help in multiple languages and wouldn’t believe me when I said I was fine. I unbuckled my seatbelt to find my medical paper and she freaks out and tells me not to move. She’s starts asking if I have a heart condition or if I’m on something and I try to tell her no but the chick calls 911…
at this point I’m still a little dazed but also panicking. the lady is telling the operator the normal things but then tells the operator she thinks I have a heart condition or might be diabetic or might’ve gotten into a car accident…
i try to speak up for myself but this RANDOM lady hushes me and keeps spewing shit to the operator despite my medical paper having explained everything. then of course the operator says folks are en route and says I can’t get out of my car. she starts asking the lady to check if I have narcotics in my car and I start to get angry. the lady had already gave false info about me to the operator (DESPITE EVERYTHING BEING OUTLINED IN MY PAPER) and told the operator that she had a kid in her car parked behind me but she stopped by to “do a good deed.”
anyway I tried to accept my fate that ems was coming but the alarms turned out to be fire first and out of the truck came FIVE more people and they surrounded my car. the RANDOM lady up and left pretty quick all fucking proud of herself as I had to deal with FIVE people asking me for all the details. I handed them my medical paper and they asked to check my blood sugar and I agreed. but turns out one of the people was training that day and they took my blood sugar and it was normal (as I knew it would be!!)
then 2 police cars show up
and then ems shows up
8 people in total…
and everyone wants a retelling of the story just to add on to the consensus that I was literally fine but of course, everyone kept asking if I was drinking or using or if I took a drowsy medication
once I was able to call someone of my own for help (someone who was literally listed as the first person to call on my medical sheet) they let me know that this person had to drive me home because they weren’t letting me drive…
and the best part?
theyre sending in a fucking report and marking my license for review by the fucking state…
wtf!?
UGH
this shit has taken too much of my life and thanks to Karen I missed my plans that evening… 😒
First of all… I’m so confused. Why does warmer temps make folks sleepier but it’s recommended to sleep at night in cooler temps?
Anyway, maybe it’s just me but a cold body temp can indicate to me that I either just woke up from a sleep attack or am about to fall into one. Every time I wake up from a nap I check myself for any issues bc sometimes I’ll have marks on my face from falling asleep on the binding of a notebook or my foot will be asleep bc I fell asleep sitting on it but i will often notice that I feel very cold upon waking and some folks have noticed that I can start shaking when I nap which I’m thinking is just shivering bc im cold…
Does anyone else have this? Does anyone know what it could mean?
My dad was on lexapro for nearly a decade and weaned off of it almost a year ago. He has a lot of feelings but the meds suppressed them a lot. It’s not like he was ever very literate about them or in touch with how he really felt but my mom convinced him he didn’t need them anymore… Neither of them are very emotionally mature and hardly emotionally attuned but he was always better than her but you had to draw it out of him because he is hardly ever present with people (his father was even worse)
But now?
Now he’s angry.
So angry.
His father had a bad temper but I used to be grateful because I thought he hadn’t inherited it (bc my uncle sure did)
But now the littlest things set him off and the ”weirdest” things make him cry… He yells so much more but he claims that the meds made him “wake up and realize just how selfish and rude of a person I am and how infuriating I make him“
I used to wonder if he disagreed with the way my mother treated me but he says that now he’s realized that she was right all along bc he was just too blind to see how difficult I am…
I don’t even know what to say… He was always the safer parent for me but now his temper makes him feel unrecognizable… He yells at me and his face gets all red and he will shut doors in my face and just start attacking my character left and right. He never stood up for me to my mom but now he actively encourages her when she insults me and makes me feel worthless. I know i was still scared of his anger when I was a kid bc sometimes he would get so angry that he would squeeze me super tight and restrain me until he got red in the face and scream but he hardly ever did that
Now I’m older and he does shit like that less but the yelling has increased by a lot and I feel so lonely.
I don’t even know how to feel about this bc it’s not like he was a whole lot better before… I always feel like a little kid begging for attention because it’s like I either a) get attention bc my parents are pissed at me and want to tell me exactly how mad i make them feel b) get some attention but it’s to tell me im doing things wrong or just some sort of mundane thing turned to a huge misunderstanding that proves they think I’m a burden and dont care to remember huge things about me or get to know me more c) Im competing with their phone or someone or something else they find more important for their attention or even they will flat out tell me they don’t want to listen to me anymore or tell me I talk too much or tell me I’m too self centered and have to stop talking or just straight up ignore me
im just so tired
im tired of being yelled at, especially since it often makes me cry and my dad claims that I cry to manipulate people…
I try to laugh at these things or at least not believe them but they wear on a person…
Anyone know any good salons or folks who cut hair who are good with folks who struggle with haircuts and sensory issues?
I don’t have the money to be independent but my family has made it clear they’re ready to kick me out. I’m so angry I let myself think they wouldn’t take it this far but I should’ve known. I feel so alone and without anyone for support and don’t know if a future is coming for me. I can hardly find a job with my disability and it’s hard to accept that I have nowhere to turn. I’ve never been good enough for anyone and now im failing myself. please if anyone can show me hope here I will take anything. I’ve already begun giving things away so if i dont have a place tomorrow I don’t have much to pack. I dont know where to go or what tomorrow holds—if my family will claim they were just kidding or kick me out for good… I’ve tried the grey rock method but it made things so much worse for me (might even be the reason I’m here) and I just feel so hopeless. I just want someone to give me a hug and tell me everything will be okay but not even my own parents can tell me they love me and it makes me wonder if life is worth living. I know everything looks so fine to everyone on the outside and Im just the one who cant measure up but I just want something that I do to be good enough for someone
I’m only 19 and I’m not ready for any of this… I don’t have the money to be independent but my family has made it clear they’re ready to kick me out. I’m so angry I let myself think they wouldn’t take it this far but I should’ve known. I feel so alone and without anyone for support and don’t know if a future is coming for me. I can hardly find a job with my disability and it’s hard to accept that I have nowhere to turn. I’ve never been good enough for anyone and now im failing myself. please if anyone can show me hope here I will take anything. I’ve already begun giving things away so if i dont have a place tomorrow I don’t have much to pack. I dont know where to go or what tomorrow holds—if my family will claim they were just kidding or kick me out for good… I’ve tried the grey rock method but it made things so much worse for me (might even be the reason I’m here) and I just feel so hopeless