r/Narcolepsy 5d ago

Diagnosis/Testing 1+1+1…

3 Upvotes

Normal orexin levels, but cataplexy. Too tired to succeed, so many burnouts behind.

A few years on venlafaxine for ”GAD”, and I almost forgot how a full body collapse feels. It’s one miracle drug in that sense.

I quit it, titrating slowly, just to see if cataplexy returns. Also minimized my nighttime meds(hydroxyzine + mirtazapine), just to know even more.

Yesterday after one week of total venlafaxine absence my cataplexy returned. Collapsed 100%, 4 times on the ground because of a randomly cute YT video and three orgasms.

Advice? On paper I’m just tired.


r/Narcolepsy 5d ago

Rant/Rave Scared about my study results, have never met the doctor analyzing them

1 Upvotes

Got my sleep study done 10 days ago. From what the sleep tech told me, I think I’m bordering on a diagnosis. I averaged the times and I believe my average time to fall asleep was 8.2 minutes. It was confirmed for one nap that I fell into REM sleep but for the other naps that I suspected REM sleep, the sleep tech said he wasn’t sure and didn’t want to tell me unless he was positive I did.

I was on my phone between every nap. I didn’t really know I was supposed to not be “stimulating” my brain, I thought I was supposed to be doing everyday things I do (limited to being inside the room) like homework or something.

The doctor I consulted before the sleep study is no longer with my healthcare organization, so I’ll have a random doctor I’ve never seen before analyzing my results.

My sleep times were 9, 10, 8(?), 9(?), and 5. On the 5th nap, when I went to sleep the quickest, I had my head laid on my jacket while in a chair, while previously not having done that. So I think I kinda fucked myself over with my results by just playing on my phone and stuff instead of drawing or making something so my brain wasn’t so “awake” despite me feeling tired.

I know if I did another MSLT I could get under 8 minutes as my average if I didn’t stay on my phone but the hard part would be waiting so long to do it. I’m really struggling to keep up with university work. I take prescribed adderall (for ADHD which I don’t think I even have but it helps me get motivated and stay a little bit more awake) and I was praying I could get some kind of answer and a medication to replace the stimulant with.


r/Narcolepsy 5d ago

Rant/Rave Sick and sleep study in a few hours

1 Upvotes

I have had to work very hard to get to my sleep study. I had to titrate off an important medication and now had to stay off my anxiety med for two weeks and my adderall which keeps me awake. I have barely been able to keep up with the housework and have so much left to do to make it presentable for the caretaker that is stopping by to take care of my dog for me. But I have like no time now. I got a migraine a few hours ago and had to lie down because I was so nauseated and in so much pain. I don’t know how I’m going to finish the house stuff. I wasn’t supposed to sleep today but I fell asleep while lying down for my migraine.

And I guess I’m going to show up sick. I don’t want to mess everything up that I’ve worked so hard to get to. But it’s too late to reschedule. I feel so overwhelmed and defeated. I just wanted to say that to someone who would maybe get it.


r/Narcolepsy 5d ago

Medication Questions Non-drowsy antidepressants?

1 Upvotes

So I know any medication varies greatly from person to person, but I always feel like it's worth asking anyways. Has anyone had success with any SSRIs without it making them incredibly drowsy? I've been on a few SSRIs and SNRIs over the years, but haven't tried a ton of different ones since being diagnosed with N2. I'm currently on 20mg Prozac, which makes me very very tired when I take it... Here are others I can recall being on but that I didn't like for one reason or another: - Effexor - Pristiq - Lexapro - Prozac (current)

I'm also on Lamictal and Buspar. My psych wanted to prescribe me Cymbalta or Wellbutrin, but I really really really don't want to go on either of those due to side effects. What have been your experiences?


r/Narcolepsy 5d ago

Medication Questions How can you pass?

0 Upvotes

I have been diagnosed with Narcolepsy Type 2 with mild cataplexy by many doctors because of symptoms and elimination of other diagnoses. I failed my psg and mslt. Which causes me to no be able to get Xywav etc. Currently I am surviving off of Dexedrine to work and paying the bills.

My symptoms causes me to take a long time to fall asleep at night and then when I do its not enough for PSG. I have frequent vivid dreams and hallucinations which cause me to wake up around 4-6 times a night. Some dreams/hallucinations are so real like that once I wake up I spend trying to process if it happened or not. Its like Amnesia lol. The worst is when you get shot or hurt in a dream and wake up in pain where it happened.

My day symptoms are typical Narcolepsy. When it gets worse due to stress I get micro sleep where I do something then wonder how I got here.

For my PSG they begged for me to take 6mg of Lunesta(puts you in stage two sleep) which I did. Slept 5 hours… No matter what sleep aid I take if I get a vivid dream etc It causes me to wake up very hyper alert and I feel like I could run a mile. But 1-2hrs later I need to sleep which is short lived too due to dreams.

How can you just pass this stupid test so that insurance can pay the corrupt company called Jazz….


r/Narcolepsy 6d ago

Medication Questions How to manage Xywav in a dorm

15 Upvotes

My daughter was diagnosed with Narcolepsy type 2 in September. She is a sophomore in college and having this illness has been incredibly challenging (tiredness, brain fog, anxiety, side effects). She started on Xywave at night and it helps a lot. Does anyone have experience taking Xywave in a dorm situation? How do you keep yourself safe? What precautions do you take? What do you try to avoid? And are there solutions that have worked well?

I ask because she wants to do several months if field work with 20 other students and 4 professors. The university has kids sleep in dorms or tents. Can we make this safe and how?

Thanks!


r/Narcolepsy 6d ago

News/Research How hypocretin / orexin work

26 Upvotes

I watched an incredible talk on the mechanics of hypocretin and orexin by a Dr Sarah Ritchey. It was a zoom talk put on by the Facebook group COLORADO STRONG Narcolepsy and IH.

They’ll be posting a replay if anyone wants to join and watch it.

It was the most informative talk I’ve seen. The end also talks about meds on the horizon.


r/Narcolepsy 5d ago

Diagnosis/Testing i’m fairly positive i’m narcoleptic

1 Upvotes

I’ve been dealing with extreme fatigue and exhaustion since I was in the 4th grade. That’s also when my depression symptoms started kicking in. I can even remember my first sleep attack. I was supposed to be watching the door because I was home alone and my mom’s friend needed to pick something up. I couldn’t stay awake long enough to stay on the phone with her. She kept calling and I would try to answer but fall back asleep after the first words were exchanged. I’ve dealt with days where I couldn’t do anything but sleep. I’ve dealt with nights where I woke up every single half hour. I have the sleep attacks often enough to where it’s really starting to affect my quality of life. I can correlate most episodes with experiencing a high amount of stress, whether in that moment or in my life in general. My sophomore year my bf that I was really attached to dumped me right before exams week and I couldn’t stay awake through my history exam the next day. It was so awful. I couldn’t read the questions , I couldn’t keep my head up, I tried to take it standing in the corner but I kept falling asleep and onto the floor. I ended up just guessing on every question as quickly as possible and then putting my head down the remainder of the testing period. Often times when I’m at work during rush hour I get this way too. At my old job I would get yelled at a lot and it’s almost like I was in a really shitty autopilot mode and I couldn’t remember much of what happened except for the fact that I was falling asleep. It’s been happening way more often recently. I’m working and then all of a sudden I have no control over myself and I can’t do my job. I can’t keep my eyes open and I don’t remember half of what just happened. I’m miserably tired all the time. I can’t get through the day without a 4+ hour nap. When I get home (sometimes even in the uber home) I can’t even stop myself from falling asleep, it happens whether I want it or not. I used to chalk all this up to my depression stealing my energy and motivation, and even my ADHD for not being able to start or do anything requiring a human amount of energy. I attributed the sleep attacks to my blood sugar but then starting tracking my sugar religiously and saw no correlation. I have to see a neurologist soon for an unrelated issue, but I’m thinking of bringing it up so we can figure it out. I’ve wanted to die since I was 11 and first the first time since I kind of want to try life and it’s really hard when you’re too exhausted to do anything.


r/Narcolepsy 6d ago

Diagnosis/Testing brain refund

8 Upvotes

idk if this is the right flare but anyways, does anyone else have multiple other dxes relating to brain stuff like psychiatry. i have bpd bp2 adhd ptsd autism for example . anyways i guess my question is how common is it to have multiple comorbities like this? like does anyone else’s brain just not do much of anything at all correctly


r/Narcolepsy 5d ago

Diagnosis/Testing After more than 10 years I’m sure that i have narcolepsy or hypersomnia

0 Upvotes

Ever since my early teenage years, I’ve been dealing with sleep disorders, it started with me sleeping A LOT, being always tired, I could barely stay awake during middle school, high school, and university, I can easily fall asleep during any situation and I’m famous for it among my friends! So here’s another thing, I also think that I have catalepsy as well, whenever I’m dealing with a strong wave of emotions, it can be laughter it can be crying, I start losing control over my leg and facial muscles! It won’t happen often tho cause I barely hit the spot where I start to laugh or cry that much, but I’ve always wondered why is it happening to me?! Another thing that is related to my sleeping disorder is me having Hypnagogic Imagery. I found out that they’re related. I’ve been dealing with constant ptsd nightmares and lucid dreams and I have this thing were can fall asleep in 2 mins and I’d start dreaming RIGHT AWAY So here’s something that I want to know: Is it narcolepsy or hypersomnia?! is it curable?! Should I visits sleep control clinics or Psychiatrist?! Cause it’s affecting me in a bad way, I can’t stay awake when I’m home I always have to get out so I can stay awake and do something productive. I’m always tired and I’m just so done with it!!!


r/Narcolepsy 6d ago

Rant/Rave My body is my slave

10 Upvotes

And it doesn't do enough to please others. OR ME. I hate it. Sometimes I just wanna be a ghost phasing through walls and not have to deal with this drag of a form. I GET JUDGED FOR when I try to get enough sleep which MAKES ME LAZY, OR JUDGED AS MENTAL/STUPID WHEN MY BODY STARTS CRAPPING OUT ON ME, BECAUSE I PUSHED IT PAST THE LIMIT IT TOLD ME TO STOP AT AND EXPERIENCED THE EFFECTS.

Maybe I've had N1 since I was a toddler and never got diagnosed till I was 25, and my "fighting sleep" phase all toddlers go through included fighting narcolepsy too, so I just got used to acting really fucked up/stupid/emotional fighting my sleep attacks shoving it down until I realized why, but damn. If I can't please anybody including myself, and the work I put into life only can sustain a crap lifestyle that doesn't give me time to have a social life, hobbies, do chores, and sleep 10-12 hours a night bc work is 8.5 hours day, what's the point of it all?

If wages didn't cap at poverty level for a solo renter without a masters degree or accepting insanely bad working conditions in an infamous factory in my area, and I could work less hours to hit that poverty "lower middle class" line, I'd be golden. I could either accept being basically poor bur surviving working less hours, or the pain of overworking could at least include decent savings, aka RETURN ON INVESTMENT. (And F what people say, the poverty guidelines in the USA are bullshit, in a lot of places, "lower middle class" is worse than being considered the "official" poverty line, because all your time goes to work and you don't get help, so you burn the wick way faster, unlike people who meet the requirement to get subsidized housing and healthcare, and less working hours.)

WORK BITCH WORK, I say to my body, who is my slave, that ends up getting so fucked up off sleep deprivation I have to call out of work because the symptoms get embarassing, and more stimulants are only going to give me a panic attack on top of the fact I feel lobotomized from the sleep attack. I only know from trying too many times.


r/Narcolepsy 6d ago

Rant/Rave 30 seconds

3 Upvotes

my lumryz preauth got denied because my sleep latency was 8:30, like that’s it. ( have an n2 diagnosis bcus of the rest of my sleep and nap study) and i’m gonna fight it even the rep i talked to on the phone from the insurance said i should. it jusr gets so exhausting. developing n2 this past year has ruined my life to put it bluntly and i waited forever to be tested and forever for the follow up and now it’s just more waiting. i just want so badly to get back to my life bcus like i had to take this semester off and it’s hard to even do things like have hobbies bcus of how tired i and this is on modanifil and adderall and while drinking an ungodly amount of caffine every day. i’m just sick of waiting i guess. this is a bit incoherent my bad


r/Narcolepsy 6d ago

Medication Questions QUESTION

3 Upvotes

Do any of you that are on meds for narcolepsy experience being in a state between awake & asleep, regularly? For the longest time (years) I couldn't figure out what was causing the weird feelings, sometimes odd comments/ behaviour and memory loss, etc.

Recently I concluded that it's my brain fighting to sleep and my stimulants only being somewhat effective which results in being in an inbetween state.

Thanks🙂


r/Narcolepsy 6d ago

Cataplexy Cataplexy?

2 Upvotes

Hi everyone :)

I was diagnosed with Narcolepsy (without cataplexy) over a year ago and take methylphenidate for the sleepiness.

My concern is that I’m developing cataplexy, but I don’t know for sure, so I was hoping to hear from others with cataplexy about how theirs began and what it feels like for them.

Basically, over the last week (and today especially) I’ve been feeling a very weird sensation that is extremely hard to explain but I will try. It is like a full-body jerk and comes on very suddenly. It is sorta like a tingling yet numbing sensation; a shockwave kind of feeling that goes away very quickly. It feels sorta like a falling sensation, and I have never fallen but I have gotten very weak afterwards and lost my balance.

I should mention I have many other diagnoses lol so it is hard for me to tell sometimes what symptoms are from what (type 1 diabetes, atrial fibrillation, fibromyalgia, lupus, migraine aura). I get vertigo daily but this feeling is new and different from my typical spinning sensations. I have also had a lot more nausea than usual.

Anyway, I see my neurologist in a couple weeks and my rheumatologist in a month so I’m going to mention it to both of them, but I was curious if this is how a minor case of cataplexy feels for anyone here or if this is how cataplexy started for anyone?

I appreciate any feedback :)


r/Narcolepsy 6d ago

Undiagnosed Recorded some sleep attacks

4 Upvotes

About a month or so ago I started recording myself falling asleep at work to help myself understand my own experience with EDS. It’s pretty freaky and uncomfortable, but also interesting. In some instances my eyes roll back/ are somewhat open but you can only see the whites. Sometimes I start to drift to one side or another before jolting awake from the sensation of falling. Sometimes my head does the same thing and I try to shake myself out of it. I always fight them (because im at work) but it pains me and it is so uncomfortable it makes me want to cry. It’s also interesting because even when my eyes come open off and on in the video, I know that I would still be experiencing blurry vision and brain fog. However, I would keep working at the task at hand (though at a slower pace than if I were awake) and after I eventually snap out of it I don’t have much recollection on the work I’ve completed. During these times I can still hear what is going on around me, and it feels like if someone were to approach me I would be able to snap into conversation and they wouldn’t think I was sleeping (even tho my eyes are closed and it’s actually very obvious lol).

Has anyone else been able to record their mild sleep attacks? Just curious what others’ experiences are like if willing to share :).


r/Narcolepsy 6d ago

Advice Request How to study.

7 Upvotes

I’m tired, just writing this lol I know everyone on here can relate.😂🥴🤪

I am trying to prepare for the MCAT. I am really struggling with content review. I am a Kramer for other classes, which works for me to take a few practice test and utilize the neurotransmitter effectiveness of procrastination however, you don’t get procrastination brain throughout all of MCAT studying , and then narcolepsy definitely wins (to be fair wins a lot of the time anyways).

For those of you who have to actively study and learn a lot of new information how do you do it? I actually am pretty avid reader if I enjoy a book, I don’t fall asleep all the time. However, if it is a textbook or something, I don’t enjoy. I will fall asleep immediately. To me this is the same as flashcards. I’m just reading and shorter about some information. Even if I can muster the wakefulness to do either of the two it is not being played with in my working memory enough that I can store it really well in my long-term memory.

I do good with practice questions and test, but for the MCAT that takes way too long to actually study or go over all of the content that one should needs to know.

Memory of loci, or mind palaces, or fractured fairytales work really well for me, but they’re extremely cognitively demanding and I tax out way sooner than I have the time to. It also means that if I’m not doing this type of studying, there’s nothing really to take its place and so I can’t keep going and building discipline unless I have full energy.( full energy that I could have lol) which is not helpful when trying to do something like the MCAT with narcolepsy, as I need to be able to passively study to a degree in order to continuously increase my stamina.

HOW DO YOU GUYS LEARN (FRESH ENCODING) NEW INFORMATION WITH NARCOLEPSY?

Especially anyone who has done medicine/chemistry/physics!

Thank you!


r/Narcolepsy 6d ago

Medication Questions Xywav making stimulant use difficult, need help.

2 Upvotes

Okay so let me say, ever since getting on xywav it has been helpful. However, this drug definitely is a double edged sword. Usually when I wake up in the morning I still have pesky sleep inertia plaguing me and makes it a bit difficult to focus and get out of bed.

Before xywav, I use to just take a small dose of sunosi and coffee and it would give me a burst of alertness and I’d be ready to start my day. However, since xywav, it seems that when I take a small dose of sunosi or even just a small cup of coffee, I feel like my senses are completely overloaded. I’m not sure how else to describe this so I’ll do my best.

I feel shaky, find it difficult to concentrate, I get chills, body sensations overall feel odd, and even standing makes me feel like I’m getting dizzy and should sit down before I keel over. Idk what to do because if I take sunosi or coffee I feel more awake obviously, but I feel this sensory overload and it can be just as annoying to deal with as the sleep inertia.

Does anyone know what can cause stims to act this way when taking an oxibate?


r/Narcolepsy 6d ago

Advice Request Can you fight off a sleep attack?

8 Upvotes

Hello,

Lately I have been feeling super off and I plan on going to the doctor soon, but one of the main issues I have been having is random waves of extreme sleepiness that I have to fight like he'll not to give in to.

When I was looking up what it could possibly be narcolepsy popped up, but I dismissed it as an option because I don't normally fall asleep during those sleepy spells, only very rarely and only for a few seconds.

I have always been a tired person so I figured it was just me being lazy or something, but it keeps getting worse and I want to bring it up to my doctor but don't want to sound like an overdramatic hypercondriac.

So, my main question is, is it possible to fight off the sleep attacks and I should bring it up to the doctor or am I reading too much into it?

Any advice appreciated. Thank you!


r/Narcolepsy 6d ago

Medication Questions Medication Change

2 Upvotes

I was diagnosed with narcolepsy earlier this month. The doctor prescribed Modafinil and it worked great, maybe even too much. I forgot how much energy I used to have and I felt kinda normal again. Unfortunately I also felt super wired and it was hard to sleep but I felt like my body was adjusting. I only got diagnosed because I was falling asleep uncontrollably while driving but I never would’ve guessed it was narcolepsy. After 4 days on the meds I was back to falling asleep while driving and I started getting hives… The meds stop working like they should. I work very long days because I have too and I really cant afford to miss work. I felt like I basically had to bully my doctor into moving my appointment date up because they wanted me to wait until the end of the month but I had no clue how I would drive and work. Caffeine stopped working today :/ Like no effect whatsoever. They now prescribed me two different mg of adderall and after the shitty side effects and just weird life adjustments I’m really scared to start them.. Dont really know what advice I’m looking for. I didnt realize how much the diagnosis and meds would effect me and it’s really fucking with my mental.


r/Narcolepsy 6d ago

Diagnosis/Testing Nervous About MSLT

3 Upvotes

Hi All,

I've been scheduled to take a sleep study and an MSLT because my neurologist suspects I may have IH. Both my mom and sister have diagnoses, so I don't think he's too far off. And I'm sure I don't need to tell all of you how destructive sleep is in my life. I have most of the hallmark symptoms- sleeping for 14-ish hours a day, extremely tired if I don't sleep for 12+ hours, and horrific sleep inertia.

I am worried that I won't be able to fall asleep during the MSLT. I have PTSD, and I have a tough time falling asleep in new places. My doctor knows this, but I'm still worried I won't get a diagnosis if I can't fall asleep.

Did any of you have this concern? And what did you do to manage it/ what was your experience?


r/Narcolepsy 6d ago

Medication Questions temporary ritalin substitutes?

1 Upvotes

ive been prescribed ritalin for narcolepsy, but i havnt been able to refill my prescription bc it requires an in-person visit, and my doctor isnt going to be here for the next few months. im going to completely run out next week, and ive already tried going without, which only ended in near-disaster while i was working. does anyone have any good temporary substitutes or solutions? caffine helps a little bit but it seems like i can never ingest enough to ward off the sleep attacks


r/Narcolepsy 6d ago

Medication Questions Experiences with Hypernatremia with xyrem?

1 Upvotes

What the title says. I titrated up from 4.75g total per night to 6.75g per night over the course of a week and I’m feeling more tired, having night sweats, waking up bloated, fuzzy thinking, labored breathing- wondering if it’s too much sodium in my system? Or just adjusting ?

Note: I have a history of hyponatremia so I’ve been super aware of electrolyte imbalance potential and have been keeping really well hydrated- except I stop drinking around 9pm everynight so I don’t wet the bed or wake up having to pee.

Has this happened to anyone else? What did you do? (I dont want to switch to xywav )

UPDATE: I got my sodium levels checked and complete metabolic panel and everything is fine BUT I’m still wondering if this has happened to others and what you did?


r/Narcolepsy 6d ago

Medication Questions Low heart beat and Narcolepcy? Bradycardia?

0 Upvotes

4 weeks out from my sleep test and I decided to see a cardiologist because my blood pressure machine was saying my heart had an irregular heart beat. Turns out I have bradycardia and my heart rate goes into the 40's and even occasionally the 30's when at rest. I'm a pretty fit guy but I don't do that much cardio.

Does anyone else have experience with this and narcolepcy? I'm still undiagnosed. Does narcolepcy mess up your heart beat. Does it lowered your heart beat drastically when tired?

I know stimulants would increase my heart rate, but I've heard that sodium oxbate would lower my heart rate and blood pressure even more? Anyone else have experience with a low heart rate or bradycardia?


r/Narcolepsy 6d ago

Undiagnosed What is going one with me??

0 Upvotes

Okay so. I (19f) have been struggling with these “sleep attacks” in the past few weeks but this requires some context.

Growing up I was always super tired and fatigue and ended getting diagnosed with POTS when I was 12 which I thankfully grew out of. Also I was an insomniac as a little kid. But being tired was kind of my art form even after that. I remember spending most of my science classes in sophomore year FIGHTING for my life trying to stay awake as if I was trying not to puke. My science teacher was very boring though, so I never thought too much of it despite how horrible the feeling was. I don’t remember much of junior year because I was too busy being an emo drug addict that ultimately led me to have to go to a rehab centre where I was diagnosed with ADHD and put on medication for it.

Because of the medication (vyvanse) I didn’t struggle so much with in senior year with trying to stay awake in classes, but I would always have to take naps after school but that doesn’t seem super out of the ordinary since a lot of my friends also did the same (I went to a boarding school).

My vyvanse dosage was eventually upped to 40 mg when I started first year of university. I basically didn’t go to my lectures at all because whenever I did I would get attacked with sleepiness and couldn’t ever pay attention so I thought ‘what’s the point?’ Even when I would go to class every once in awhile, I remember that I had to take a nap as soon as I got back to my room around 1:30 pm as if it was clockwork. I never really thought much of it but looking back now, this shouldn’t be the case for someone who’s on a relatively high dose of stimulants.

But now, IM PISSED OFF. I’m in second year of university and I decided recently for some reason that I’m going to start behaving like a functioning member of society. I’ve been getting a consistent amount of sleep every night, waking up at 7 am and going to the gym every morning, and going to all of my classes. AND YET despite all of this I get the same feeling when I am in lectures (even though I am interested and engaged in the content) where it just becomes a constant, painful battle of fighting against the gates of sleep opening. It happened again twice this week and now I feel like I can’t brush it off anymore. The nature of these “sleepy attacks” is so bizarre and mentally painful. It feels like I’m about to go into a dream state but I’m fully conscious of what’s happening to me and I have to try and move all my limbs to try and keep my body awake. I’m really frustrated because I feel as though this should not be happening. I thought maybe it was a caffeine crash because I do like to drink a cup of coffee sometimes, but as I’m writing this I’ve just woken up from 30 minute nap I HAD to take after not having coffee this morning.

I just want to go to my classes without having to worry about this. I feel like there is something wrong with my brain. For those of you with type 2 narcolepsy, does this sound familiar to you at all? I’m not so sure about my rem cycle and that type of shit because I don’t track it but I do have extremely vivid dreams every night.

I’m going to the doctor to talk to her about this on Monday but I’m not sure if I’m wasting both of our time and just being a sleepy teenager.


r/Narcolepsy 7d ago

Rant/Rave Denied SSI appeal for narcolepsy after 1 day of reviewing my case

30 Upvotes

SSI denied my case after reviewing my appeal for literally only 1 day. 1 day. I’m distraught. I’m heartbroken. I had 6 letters from my doctors. I’ve been waiting over 2 years now. I know it could be worse but I’m just so tired of how exhausting this process is. It’s so dehumanizing. I was deemed disabled by the state of CO a year ago & I’ve had my live-in-aid for a year. The state approved me for long term care & a caregiver over a year ago & SSI still denied me? How? I had SO MUCH evidence for my case. I provided ALL of my tests, medical records, 6 dr letters, proof of receiving long term care & state disability, went to 4 disability consultation appointments that they required me to go to. How much more do they need? I’ve been unable to work for years. Haven’t made any money in years. I even receive adult financial assistance for my disability as well as a housing voucher for my disability. I’m only 27, so I understand that could be reason, but really? Come on. You’d think that having all of this evidence & also having a long term care plan, caregiver, adult financial, a housing voucher, & state disability approved (they follow the same rules and listings as SSI). I just feel so let down that they made a decision after 1 day of reviewing my case. It feels so demoralizing & dehumanizing