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legsarerequired
Dec 31, 2007


College Slice

I've only been diagnosed with narcolepsy since March. I've learned a bit about it, but I feel like I'd like to hear about others' experiences. Also, other people are more than welcome to also ask questions. I'm definitely not a medical professional, so if we're lucky an actual neurologist/sleep doctor might be willing to contribute to the thread.

Specifically, I'm curious about the following. You do not have to answer any of these questions for any reason if they are too sensitive/personal/boring:

What support resources have you found the most helpful?

I find the facebook groups to be really bad about having lots of repeat questions all day. In the xyrem support groups, there's at least one post every day along the lines of "hey i start xyrem tonight anyone have any tips?" I understand wanting to talk to other patients about the medicine, but it's the kind of thing that I wish would get directed to a single post rather than having the same posts with the same answers pop up every day. I also had to check out of multiple facebook groups for narcolepsy/sleep disorders that endorsed anti-vaxx discourse.

I've found the most support from the people I know through my peer groups that manage narcolepsy.

There's an in-person support group that meets once every three months that one of my friends enjoys.

How many people do you know with narcolepsy?

Somehow, I know at least seven different people professionally diagnosed with narcolepsy and three people who take Xyrem, including another employee at my company.

I'm told this is very uncommon. I think it has something to do with my living in one of the US' largest metropolitan areas--being in a densely populated area, we're able to find each other more easily than if we all lived remotely. Getting diagnosed with narcolepsy can also be way more of a trial if you don't live in a city with multiple sleep disorder clinics--I had so many blood panels and tests and saw so many doctors before I finally saw a neurologist, and I'm sure all of this would have been prohibitively expensive without insurance.

If you'd like to talk to other people with narcolepsy, this thread or any of these other resources might be helpful:
- r/narcolepsy
- Facebook has a lot of narcolepsy groups that don't always have great medical advice
- Meetup.com might have meetups for people with sleep disorders
- Narcolepsy Support
- The National Organization of Rare Diseases lists other support organizations [https://rarediseases.org/rare-disea...g-organizations]here[/url].


Do you think you have family history?

I have the narcolepsy gene and my father always falls asleep after sitting down for five minutes. I always thought he was just tired from work when I was little, but he also has some kind of sleep issue.

What led to you getting diagnosed?

I think I've always felt more tired than others since at least middle school.

I got diagnosed with obstructive sleep apnea in 2014 when I was 26. For those unfamiliar with OSA, it essentially means that your body does not breathe correctly when you sleep due to obstructions in your airway. This can cause people to wake up choking, or they might just feel exhausted after struggling to breathe at night. I improved my sleep efficiency by 14% through a 50-pound weight loss and undergoing surgeries to open up more space in my airway. My ENT surgically corrected a deviated septum, reduced my turbinates, removed a marble-sized bone spur that blocked my left nostril, then later performed a tonsillectomy and adenoidectomy. My ENT and GP said my OSA appeared to be cured according to the sleep labs, so they didn't know what else they could do for the daytime sleepiness.

I did an allergy test, ran bloodwork with an endocrinologist for thyroid/adrenal fatigue/nutritional/blood sugar/hormonal issues, got a cardiac baseline, spoke to a registered dietitian about potentially changing my diet, got an MRI--we never found anything that would explain why I was continuing to wake up after a few hours of sleep and feeling constantly exhausted during the day. A psychiatrist put me on 50 mg of Vyvanse, but I was still constantly passing out and napping three hours after taking it.

Two friends with narcolepsy and another doctor urged me to see a neurologist specializing in sleep disorders. I fell asleep in the waiting room at a sleep disorder clinic, which judging by the staff and patient reactions is surprisingly uncommon.

The neurologist requested an in-lab sleep study and a MSLT. For the overnight sleep study, a sleep technician places electrodes on your limbs, chest and head to monitor your pulse, breathing, limb movement, rapid eye movement, and brain activity over night. They can see when you move between different phases of sleep, when you are experiencing rapid eye movement, and if you're struggling to breathe. I think it's pretty easy to fall asleep with all of it, but then again I can fall asleep anywhere. For the MSLT the next day, you keep most of the electrodes on and you are instructed to take four or five naps. The sleep technician records how quickly you fall asleep for each nap and how quickly you enter REM. I got diagnosed with OSA and narcolepsy.

What is your treatment plan?

My neurologist put me back on an APAP and wanted to try armodafinil but I still constantly fell asleep. A CPAP titration showed that the APAP was adjusted correctly. After the titration, he prescribed me Xyrem. I've taken Xyrem for about a month now and I'm hoping I'll be able to taper down the Vyvanse and Armodafinil soon. After starting Xyrem, I have more energy than before, but I still want to pass out by 9pm. The problem is that this leads to me waking up at 4am, which leads to me wanting to pass out super early. It's easiest for me to ignore that I'm tired if I'm constantly moving (as opposed to sitting still at a dinner or reading quietly or something), so I'm making myself exercise after work by going bouldering with friends, going to running meet-ups, etc.

Does caffeine or other over-the-counter remedies help you?
Barely. My other friend with narcolepsy hates caffeine because he still felt tired, but couldn't even nap to make it go away.

I do think sugary drinks can somewhat help.

Do you request FMLA/ADA accommodations at your job? How did your employer react?

My doctor wrote a note saying I need up to two hours a day to nap when I am so tired that I cannot focus my eyes. I previously did this in my car, but my employer's HR asked that I use a specific room for this. The last person with access to the room was a nursing mother who used it to pump. I'm surprised that I'm the only one using it right now. I keep a self-inflating camping mat, a blanket, a pillow, and a change of clothes in case I've worn something to work that can't get wrinkled or that would be uncomfortable to sleep in. HR also offered me the option to use flex time so I could work late to make up any time I spent napping. I live in an at-will employment state so I could still get fired at any time for any reason however.

The other people I've spoken to all say they:
- are afraid to request accommodation
- were given FMLA/ADA accommodation for naps and they are allowed to sleep in their cars
- were given FMLA/ADA accommodation for naps and he sleeps in a supply closet on a mat
- work freelance specifically so they can set their own hours

Sometimes people see me going to the floor with the FMLA room and ask me why I'm going there. They probably don't know that there is an FMLA room on that floor and they probably are just curious about what's on that floor. I still feel kind of private about it so I usually dodge the question. That probably isn't the best thing to do.

How have your friends and family reacted?

My friends are very supportive, although I try to mostly talk about it to other people I know with narcolepsy. Some people act like it's this scary thing. I've dealt with this since I was a teenager and I'm hoping to get better with treatment, so I honestly feel a bit hopeful. Other people diagnosed with narcolepsy understand how I feel about it and are less likely to treat it as scary.

I'm the first in my family to get diagnosed with it. My family thought the OSA and narcolepsy stuff was nonsense or me pursuing unnecessary surgeries. When I got prescribed Xyrem and asked if I could sleep at their place for the first few weeks I took it in case I had an adverse reaction over night and needed someone to call 911, I think that made them realize this wasn't something I was playing around with.

If you take Xyrem, what routine works best for you?

Xyrem is sleep aide prescribed to people with narcolepsy. The idea is that if stimulants don't keep you awake, your doctor will try a powerful sleep aide to force you to sleep through the night so you will wake up better rested. Many narcoleptics might be able to fall asleep easily, but then we wake up two or three times a night and feel miserable all day afterwards. In the past, I've been prescribed ambien and trazodone, and Xyrem is much more powerful. Xyrem is only approved for people with narcolepsy.

It's also a little weird, because you take Xyrem twice a night. The doses must be spaced out at least 2.5-4 hours apart because the drug can cause people to stop breathing if too much is taken at once. I've heard that Jazz Pharmaceuticals is doing clinical trials for a once-a-night Xyrem, but it could be years before it hits the market.

I'm currently prescribed 3.75 grams of Xyrem for my first dose before bed, and 3.25 grams for my second dose 2.5 hours later.

I've only been on Xyrem for about a month, but I notice that I sleep and wake up for four hours after each dose. My neurologist wants me to take the two doses 2.5 hours apart, but this can mean that I only get 6.5 hours of sleep because I wake up four hours after that second dose. I woke up with headaches when I took my initial doses four hours apart. I think now that I've titrated up to a higher dose, I'd like to try taking them four hours apart again so I can get eight hours of sleep.

At one point, I titrated up to two doses of 3.75 grams of Xyrem per night. I felt very alert and awake the next day, but also extremely sedated. At the same time, I was not sleepy or fighting the urge to sleep. I wondered if I was tired and tried to lay down for a nap, but I just felt so awake and also extremely relaxed. It was such a weird feeling. My neuro suggested I keep 3.75 grams for my first dose and lower the second dose back down to 3.0, then increased the second dose to 3.25 grams, but I'm still waking up tired and groggy whether I space out the doses by 2.5 hours or 4 hours. I'm afraid to increase it back up to 3.75 grams again, but I'm wondering if I need to bring it to 3.5. It was really nice not wanting to nap, but I was just also too relaxed to focus. It didn't feel as cloudy as being high on THC, or like the disorientation I'll feel once the xyrem kicks in at night--just like I was so relaxed that I couldn't pay attention. I'm not sure I'm explaining this well at all.

After your diagnosis with narcolepsy, have things improved?

I think things improved after I started Xyrem last month. I feel a little more alert. I'm not constantly thinking about how soon it would be socially acceptable for me to duck out of an event to go to my car and sleep. I'm going and doing things with my friends once or twice a week again instead of once every couple of months, and I've started doing fitness classes after work. I'd like to taper off my stimulants at some point. Part of me is scared that things are just going to get worse and worse as I get older, and that it won't work, and I'll always feel too tired to do anything but lay in bed. Or that I could get laid off from my job and lose the little progress I've made.

What do you do about driving?
I don't have to renew my driver's license for another four years. I've never had trouble driving. I suppose I'll ask my neurologist if he can write me a note or something, or what he suggests I do. My state's DMV page is somewhat vague about their process for people with narcolepsy. One of my friends told me that she lies and says she doesn't have it. All of my friends drive, so I guess I'll ask them what they do.

If you experience cataplexy, what is it like?
I don't experience cataplexy, so I can't speak to this.

What are ways that people with narcolepsy can contribute to our community?

There are grassroots organizations such as Wake Up Narcolepsy.

The National Organization of Rare Diseases lists other support organizations here.

If you want to list yourself as a potential volunteer for clinical research, you can review the following websites:

CISCRP
Center Watch
Sanford Research's Coordination of Rare Disease's research survey

Anything else you want to share?

I think it's really cute how many of the xyrem online groups shut down after a certain time of night. We're all taking our medicine and sleeping.

If you clicked on this thread because you have sleep apnea, you might also be interested in the sleep apnea megathread over in The Goon Doctor sub.

Besides that, I think I've summed up everything.

legsarerequired fucked around with this message at Aug 2, 2018 around 02:42

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DeeplyConcerned
Apr 29, 2008



I've been diagnosed narcoleptic since around 2010.

legsarerequired posted:


What support resources have you found the most helpful?

Basically just having a really good neurologist. I've been through three total, for various reasons, and she is by far the best. She explains what's going on with my brain, what treatment options are and gives her honest opinion.


legsarerequired posted:


How many people do you know with narcolepsy?
0

legsarerequired posted:

Do you think you have family history?
Not that I know of for narcolepsy. As I understand it there is a subtype of the Human Leukocyte Antigen (HLA) that about 30% of the population possess. Only individuals with this subtype can get narcolepsy, but only a very small percentage actually do get narcolepsy. That's because the immune system has to be triggered to attack the orexin-producing neurons in the brain which causes the disorder. It's not clear what causes the immune system to be triggered, so it's partly genetic and partly environmental.

legsarerequired posted:

What led to you getting diagnosed?
I was in grad school and falling asleep 5-10 times a day. I would fall asleep on the train on the way to work, in my classes, on the train home, etc. Someone told me this was really abnormal and to see a doctor. They did a sleep study and basically ruled out every explanation except for narcolepsy.

legsarerequired posted:

What is your treatment plan?
Right now I take dextroamphetamine 4x/day for wakefulness. I have been on ritalin, modafinil and armodafinil at different points. The ritalin was not effective and caused bad side-effects, but it was my only option because pre-obamacare I literally could not purchase insurance, period. The modafinil costs about $1,200 a month without insurance, so even though it was the first and most effective medication I tried I could not take it for years because of the cost. Same deal with the Xyrem, only replace $1,200 with $10,000. When I finally did get back on the modafinil I realized after some time it was causing cluster headaches, so we discontinued that and landed on the dex. The dextroamphetamine has been great so far. I don't get bad side-effects and it's very effective for keeping me awake when I need to do something important.

legsarerequired posted:

Do you request FMLA/ADA accommodations at your job? How did your employer react?
I'm a consultant, and the job I have right now is done 99% at home with zero supervision, so this is not really an issue for me.

legsarerequired posted:

How have your friends and family reacted?
Honestly it does not come up a lot. If I'm out drinking with my friends, they sometimes think I'm totally wasted because I'll pass out if I am really bored. I had to remind them, "Hey you bastard I have narcolepsy. Just poke me in the leg next time it happens and I'll wake back up.

legsarerequired posted:

If you take Xyrem, what routine works best for you?
My neurologist was pretty anti-Xyrem. Based on what I've read I have to agree with her. As scary or weird as it sounds to take amphetamines, they are actually not as addictive as Xyrem. I like the fact that I can quit taking the dex for a few days or a week if I don't have anything important to do, and I won't have any uncomfortable or dangerous withdrawal symptoms. That would not be the case if I was taking Xyrem. Also, because insurance companies have hosed me so far up the rear end, I actually don't trust that they wouldn't cut me off suddenly and potentially kill me because they are heartless amoral fucks. So this to me is the safest and most reliable treatment we could come up with.

legsarerequired posted:

After your diagnosis with narcolepsy, have things improved?
Hell yes. I was miserable before and almost unable to work at all. With the help of treatment I was able to finish my degree and now I rock so hard at stats I could work and make a living without even taking medication anymore because it's so easy for me.

legsarerequired posted:

What do you do about driving?

If I'm too tired to drive, I don't drive, period. If I'm driving and I GET tired, I pull over right away. Usually it's not a problem but narcolepsy or no, anybody who can't focus 100% alertness on driving needs to be off the road. Like you, though, I've never had a problem getting tired while driving. I think it's because you can consciously maintain altertness if the demand is constant and you have to remain vigilant.

legsarerequired posted:

If you experience cataplexy, what is it like?
I don't experience cataplexy, so I can't speak to this.

Hope that was helpful! I'm open to answering more questions as well.

legsarerequired
Dec 31, 2007


College Slice

Thank you for posting your responses!

DeeplyConcerned posted:

Basically just having a really good neurologist. I've been through three total, for various reasons, and she is by far the best. She explains what's going on with my brain, what treatment options are and gives her honest opinion.

If someone were to ask you for potential red flags when looking into neurologists, what would you advise? (besides general doctor-selection-advice such as finding someone with good office staff, someone who speaks to you in terms you can understand about your condition, etc)

I mostly wish I'd spoken to a sleep disorder specialist sooner. When I first requested all of my labs from the past few years to show my neurologist, I saw that there was one lab where the results were inconclusive because I only slept for thirty minutes but all my GP told me was that they didn't find evidence of sleep apnea. I'm glad I got the septoplasty and tonsillectomy because I now rarely get sinus infections, but it's so frustrating knowing that I could have been past all of this years ago.

I saw a post in a support group by someone who got diagnosed at age 50. She thought she was lazy her whole life and constantly got fired from jobs for oversleeping, falling asleep at work... She said she felt like she'd wasted her life.

quote:

I was in grad school and falling asleep 5-10 times a day. I would fall asleep on the train on the way to work, in my classes, on the train home, etc. Someone told me this was really abnormal and to see a doctor. They did a sleep study and basically ruled out every explanation except for narcolepsy.

Prior to grad school, did you ever have the sense that you were more easily tired than the people around you? I definitely always just felt extremely tired no matter how healthily I ate, how much I exercised, how careful I was to sleep as much as I could, how I structured my day... I thought I was weak-willed and that everyone was constantly trying not to fall asleep every day.

quote:

Right now I take dextroamphetamine 4x/day for wakefulness. I have been on ritalin, modafinil and armodafinil at different points.

In the morning, I take 50 mg of Vyvanse and 150 mg of armodafinil for daytime sleepiness. I take 150 mg of Venlafaxine for anxiety and which I'm aware can cause daytime sleepiness), and 37.5 mcg of levothyroxine (for hypothyroidism). I'm supposed to take a second dose of armodafinil after lunch but I find that it never makes a difference so I don't. It's like I have three hours of alertness in the morning.

It also seems like caffeine doesn't really help me stay awake either. Sugary drinks somewhat help me stay awake.

quote:

My neurologist was pretty anti-Xyrem. Based on what I've read I have to agree with her. As scary or weird as it sounds to take amphetamines, they are actually not as addictive as Xyrem. I like the fact that I can quit taking the dex for a few days or a week if I don't have anything important to do, and I won't have any uncomfortable or dangerous withdrawal symptoms. That would not be the case if I was taking Xyrem. Also, because insurance companies have hosed me so far up the rear end, I actually don't trust that they wouldn't cut me off suddenly and potentially kill me because they are heartless amoral fucks. So this to me is the safest and most reliable treatment we could come up with.

That's interesting. It seems like people in the support groups just skip a day or two of Xyrem if they want to go drinking, if they're about to have surgery, etc. Whereas if I take my vyvanse more than two hours late, I start to feel head buzziness.

I hate that it costs $10,000 per month without insurance. Jazz claims they'll give coupons or work with anyone who can't afford it, but there's absolutely no reason for this drug to have increased in cost by 840% over the past decade. Now that a generic is set to hit the market in the 2020s, suddenly Jazz is trying to develop a low-sodium version of Xyrem and a once-a-night Xyrem. Completely vile.

DeeplyConcerned
Apr 29, 2008



In terms of finding a good neurologist, my advice would be to ask questions and see how they respond. Mine is clear, direct, and I get the sense that she is explaining things to me as well as her understanding allows. For example, I have some small lesions in my brain from an accident about 20 years ago, and we discussed this when I was having the side effects from the modafinil. We took an MRI and looked at the lesions and she explained that my brain was normal size, health, etc. and since the lesions happened so long ago it was not an explanation for headaches i was having. Some questions they are not going to be able to answer as the science just isn't there yet. The important thing for me was I felt she took my questions seriously, respected me enough to be honest with me about the answers, and takes her job seriously.

quote:

Prior to grad school, did you ever have the sense that you were more easily tired than the people around you? I definitely always just felt extremely tired no matter how healthily I ate, how much I exercised, how careful I was to sleep as much as I could, how I structured my day... I thought I was weak-willed and that everyone was constantly trying not to fall asleep every day.

Not really. To be honest prior to grad school I had not found any of my work or schooling very difficult or stressful. I have always had a very relaxed and laid-back demeanor. It's important to note that certain people seem very energetic and in actuality it's just heightened fear and anxiety that makes them seem that way. In normal situations they seem very high-energy but if you put them under stress they crack like an eggshell. I'm the opposite in that normal situations I feel relaxed and understimulated so I seem "tired" to them, but I thrive under stress and that helps me with public speaking, or dealing with confrontations because I can stay relaxed even when my adrenaline is in full swing. I feel like having narcolepsy sort of enhances that quality in my personality so I am even more relaxed than I would be without the disorder.

One thing I forgot to mention that has helped me probably more than the medication is doing tai chi. The way energy is described (yin/yang) seems very "woo" to most people, and I'm a scientist so I totally understand viewing concepts like that as abstract or strange. But after seeing the results I can say I get more out of it than I would running or other activities. Society tells you that your "tiredness" is a symptom, and in terms of managing your life it absolutely is. But it can also be a huge asset: by relaxing but pushing myself to maintain proper structure I have changed the way my body processes the tiredness. Now I'm 5'5 and 150 and can hold my own against a guy who has 50 or 75 pounds and half a foot on me, because when he pushed me I relax and root his energy to the ground and become like a wall.

Anyway I would encourage you to explore whatever exercise options you're willing to try, but especially tai chi. A lot of people have trouble relaxing, but I found that when I take my "tiredness", hold structure, and let it "drop" I gain an energy and alertness. Honestly I don't even think of myself as someone with narcolepsy most days because the symptoms are a lot more subtle and less noticeable than they used to be. Even though the symptoms still affect me I feel that my body and mind are a lot more in tune, so I don't really become exhausted the way I used to.

quote:


That's interesting. It seems like people in the support groups just skip a day or two of Xyrem if they want to go drinking, if they're about to have surgery, etc. Whereas if I take my vyvanse more than two hours late, I start to feel head buzziness.
I am not a doctor, but I am not sure their doctor would be on board with them suddenly stopping the meds and going for a night on the town. I would definitely listen to your body and consult with your doctor before stopping or reducing your dosage. It's a GABA agonist and my understanding was that like alcohol all GABA agonists will give you physical dependence when taken over a long period.

legsarerequired
Dec 31, 2007


College Slice

Thank you for recommending tai chi! I am reading about it now.

DeeplyConcerned posted:

I am not a doctor, but I am not sure their doctor would be on board with them suddenly stopping the meds and going for a night on the town.

Weirdly, I've been told this exact advice (to skip my dose of Xyrem if I plan on drinking) by my nurse case manager and multiple pharmacists at SDS (I get these weekly check-in calls about side effects, progress with symptoms, etc). The warnings are extremely weird because I've told multiple people at SDS that I don't drink.

504
Feb 2, 2016
I AM A GOOD CAT TRAPPED IN MIDDLE EAST! PLEASE SEND HIGH QUALITY CAT FOOD THAT WILL OWN ME IMMEDIATELY LOL! MIAOW MIAOW! FUCK!


It’s not weird, if I had a nickel for every patient that “didn’t drink” or “definitely won’t do “thing I not suppose to” while on these meds” and then went out and did drink or “thing” I’d have 375 trillion dollars.

DeeplyConcerned
Apr 29, 2008



legsarerequired posted:

Thank you for recommending tai chi! I am reading about it now.


Weirdly, I've been told this exact advice (to skip my dose of Xyrem if I plan on drinking) by my nurse case manager and multiple pharmacists at SDS (I get these weekly check-in calls about side effects, progress with symptoms, etc). The warnings are extremely weird because I've told multiple people at SDS that I don't drink.

In that case, it sounds like I may have been misinformed. Sounds like sodium oxybate is not as addictive as I thought, otherwise they wouldn't be telling you it's ok to skip a dose. Good to know, thanks!

legsarerequired
Dec 31, 2007


College Slice

DeeplyConcerned posted:

In that case, it sounds like I may have been misinformed. Sounds like sodium oxybate is not as addictive as I thought, otherwise they wouldn't be telling you it's ok to skip a dose. Good to know, thanks!

Yep! There's also people in some of the support groups who stopped Xyrem for a few weeks if they have to take painkillers while recovering from surgery/an injury, or if they don't feel comfortable traveling with Xyrem for whatever reason. I'm told it's okay to take Xyrem if you have local anesthesia, but you have to skip it if you have surgery with general anesthesia and for every day that you take painkillers while in recovery.

504 posted:

It’s not weird, if I had a nickel for every patient that “didn’t drink” or “definitely won’t do “thing I not suppose to” while on these meds” and then went out and did drink or “thing” I’d have 375 trillion dollars.

I had a feeling that could be it. I never really officially quit drinking, but I just cut back when I lost 50 pounds and then it just seemed like even a little alcohol would leave me super drained the next day. Or maybe I was just a little older, since I was late 20s at that point and now I'm 30, haha.

Milo and POTUS
Sep 3, 2017

I will not shut up about the Mighty Morphin Power Rangers. I talk about them all the time and work them into every conversation I have. I built a shrine in my room for the yellow one who died because sadly no one noticed because she died around 9/11. Wanna see it?


Do you just sleep for a long time or do you just fall asleep randomly or what

Avalanche
Feb 2, 2007


I'm sort of on the diagnosis path for Narcolepsy.

-Severe-profound obstructive sleep apnea with a normal BMI.
-CPAP has 'helped', but not that big of an improvement with daytime sleepiness at least. And yes, my pressure and everything is dialed in spot on to where my AHI every night is like 1-2.
-My narcolepsy panel labs were positive for both genetic markers, but that doesn't necessarily mean anything.

-I usually have very vivid dreams that basically feel like real life. It can get really scary as sometimes my memories from my dreams carry over to the real world and I end up thinking I had all of these conversations with people or that I did all of these things that never actually happened at least for the first hour or so after waking up. Like, imagine you dreamed of causing a car accident where you hosed up and were responsible for killing 8 little kids then waking up and walking around the house in a panic for 5 minutes until you slowly realize that 'that did not happen'.

-No real cataplexy as far as I know, but I do have very occasional balance or clumsiness issues where like my left or right knee will randomly buckle, or an eye will start twitching or something. It's said that this is associated with Narcolepsy, but it doesn't feel any more out of the ordinary frequency-wise than anyone else having random muscle twitches or jerks or whatever.

-I've had a couple instances of waking up and being 'frozen' where I couldn't move any of my arms or muscles, but this was mostly when I was younger and would happen at most maybe once a year. I haven't had one of those episodes happen for at least 5 years or so.

-Not sure if it matters, but my father got kicked out of pilot school and sent on some assignment for fuckups in Vietnam after falling asleep landing a jet fighter at 180mph or so. Skidded off the runway, flipped the plane, and completely wrecked it. Only reason he didn't die was because it was a rainy day with a lot of soft mud on the side of the runway so when the plane flipped over, the canopy didn't shatter and crush him. He's always had sleep problems.

-I've also had a few isolated minor head injuries over the years so that can't be ruled out either as a cause vs. Narcolepsy.

-In terms of actual symptoms, I'd say it's fairly minor. I can power through most work or school days without sleep, but I'll take any chance to take a nap I can like during lunch breaks. I'm not passing out in class, or falling asleep at a desk, or anything like that. Just periodic waves of 'sleepiness' that come and go every 2-3 hours or so.

Meds: Lots of Adderall. I used to be on Modafinil + Adderall for breakthrough sleepiness which was awesome and could keep me going for the whole day, but insurance changes and fuckery means that neither is covered anymore. $200/month out of pocket for Adderall every month and I can't afford Modafinil so I just don't take it. Really wish I could cut back on the Adderall as it does cause diastolic dysfunction and jacks my blood pressure up where as Modafinil/Armodanfinil + little doses of Adderall do not.


I really NEED an MSLT done as it's the defacto-step in really confirming narcolepsy vs something else but it is hard as gently caress to get a referral to a neurologist here as no one takes my insurance or are not also sleep specialists. Recommendations have been made to try and get setup with one of the more world renown university sleep centers in the country, but I haven't really had time lately or the energy to do so or the willpower to fight with insurance. Too much poo poo going on with jobs, school, grad school apps, family stuff, etc.

I've tried and tried to get prior auths approved for Modafinil, but insurance always rejects and kicks it back claiming the wrong diagnosis was submitted or "PA denied, TRY CPAP FIRST" even though I've been on a loving CPAP for 3 years (and the medical assistants faxed insurance my entire chart including the loving sleep study), or says poo poo like "The clinical literature standards WE abide by do not support a treatment of this diagnosis with Modafinil." and go on to cite american board of sleep medicine clinical guidelines from 2002.

I wish I could get a lawyer involved, but again that's another uphill battle and a cost I can't afford.



I really don't tell anyone about it as it's not a confirmed diagnosis and even if it was, no employer is going to understand. It's hard enough to get idiots in the general medical community to understand.

Avalanche fucked around with this message at Jul 24, 2018 around 15:38

legsarerequired
Dec 31, 2007


College Slice

avalanche posted:

words

I'm so sorry you're going through this. I know you mentioned that modafinil and Adderall were too expensive and you cannot get approved for armodafinil. Is your doctor willing to try other stimulants? I have a friend with narcolepsy (no cataplexy) who takes Ritalin because Adderall/vyvanse gave her uncomfortable side effects and she cannot take armodafinil/modafinil due to taking hormonal birth control for a medical condition.

This might be a silly question, but my friend has his narcolepsy diagnosed and treated by his pulmonologist. I've also observed that other people have their narcolepsy treated by their pulmonologists, although it seems way less common than seeing a neurologist. Is that something that could be a possibility for you?

I'm so scared about what would happen if I moved to a smaller city for work or something without a lot of doctors. One of my friends doesn't have insurance at all so her psychiatrist is just giving her stimulants until she can afford to get to a neurologist.

edit: Also just so you know, I know of multiple people with narcolepsy who get accommodations (nap rooms, telecommuting, breaks, etc) at corporate/retail/food service work environments. it's very likely that you would be discouraged from discussing your diagnosis with your direct manager and you might only ever disclose it to an FMLA provider or a limited list of people in HR. I worked for a company where even the local HR rep was only provided the accommodation without the specific diagnosis.

legsarerequired fucked around with this message at Jul 25, 2018 around 03:04

legsarerequired
Dec 31, 2007


College Slice

Milo and POTUS posted:

Do you just sleep for a long time or do you just fall asleep randomly or what

There's a whole spectrum of symptoms, but Wikipedia's narcolepsy entry sums it up best: "Narcolepsy is a long-term neurological disorder that involves a decreased ability to regulate sleep-wake cycles. Symptoms include periods of excessive daytime sleepiness that usually last from seconds to minutes and may occur at any time. About 70% of those affected also experience episodes of sudden loss of muscle strength, known as cataplexy. These experiences can be brought on by strong emotions. Less commonly, there may be inability to move or vivid hallucinations while falling asleep or waking up. People with narcolepsy tend to sleep about the same number of hours per day as people without, but the quality of sleep tends to be worse."

You can see a short video of someone experiencing cataplexy while playing badminton here (as a note, the video could be a little upsetting since it shows a young healthy-looking person collapsing). Keep in mind that she is not falling asleep or losing consciousness--she's fully awake and aware of everything around her as she loses strength in her muscles and collapses, and she will probably regain strength in a moment or so. Some people with cataplexy may experience less severe attacks (ie they may lose strength only in part of their body, such as the knees, part of their face, etc). Usually cataplexy is triggered by a strong emotion, such as shock, anger, or even laughter. People with cataplexy are said to have Narcolepsy with cataplexy or narcolepsy type 1). Cataplexy can be controlled with medicine.

I have narcolepsy type 2, meaning that I do NOT experience cataplexy. My symptoms started when I was a teenager and mostly entailed disrupted sleep, and constantly figuring out when I could sneak away for a nap even though I usually got eight hours of sleep a night.

Anne Whateley
Feb 11, 2007
i like nice words


I have narcolepsy without cataplexy. I was diagnosed in college, about a year after it first developed, and that whole year was full of "she's a teenage girl, it must just be feeeeelings" bullshit. I take modafinil and it does pretty well -- I always feel tired but I don't need work accommodations. I tried armodafinil, which didn't seem effective at all for me. I haven't tried any stimulants or Xyrem. I took a career path where I knew I'd have good benefits and insurance, because without modafinil I'd obviously be nonfunctional; I can sleep basically forever without it. Narcolepsy does limit my life, but I'm not in support communities for it or anything like that.

legsarerequired
Dec 31, 2007


College Slice

Anne Whateley posted:

I have narcolepsy without cataplexy. I was diagnosed in college, about a year after it first developed, and that whole year was full of "she's a teenage girl, it must just be feeeeelings" bullshit.

I never had anyone bring my being a girl into it, but I wasted so much time beating myself up because I thought I was lazy. So many people are shocked when they get the MSLT results saying they have narcolepsy.

quote:

I take modafinil and it does pretty well -- I always feel tired but I don't need work accommodations. I tried armodafinil, which didn't seem effective at all for me. I haven't tried any stimulants or Xyrem.

I know this might be a silly question, but when you say that you always feel tired, what does that mean? I can't go more than three hours before I'm fighting sleep (and that's with the Vyvanse and the Armodafinil I take in the morning). With my FMLA accommodation, I'll usually nap for 60-70 minutes and then I'll go back to work, but sometimes I'm fighting sleep the rest of the afternoon too. Since I started Xyrem, I'm able to fight off the midday nap way longer, and I even have energy to work out and such after work, too. I'm trying to do that every day, and to see my friends more often too. I figure the better I take care of my body, the better I'll be able to improve my health.

Anne Whateley
Feb 11, 2007
i like nice words


I knew that something was seriously wrong. I didn't know if it was narcolepsy or another sleep disorder, but like, in December I would walk to classes in only a T-shirt, thinking the cold would wake me up, and as soon as I sat down I'd fall asleep. I had been a normal teenager, so I liked to sleep in on Saturdays, but nothing like that -- it was very obvious to me that something had really changed. But most doctors took one look at me and were like she must be depressed, or anxious, or homesick, or afraid she won't do well in college so she's faking this to get out, or maybe she got roofied at a party, or maybe she's hysterical about nothing, blah blah blah. Then there was a brief round of "maybe it's mono," then as soon as I saw a sleep doctor for an overnight study, they realized that not only did I fall asleep immediately and sleep heavily all night, but I also started dreaming immediately (like I'd been saying), and that indicated the MSLT and there we were.

Modafinil stops me from feeling sleepy (eyes feeling heavy, closing, brain shutting down) but it doesn't stop me from feeling tired (ugh I'm wiped, oh man if I didn't have to work I'd totally be in bed) at all. Thanks to modafinil, I don't sleep at all during the work day, but I'm not like peppy or energetic or not thinking about bed.

Anne Whateley fucked around with this message at Jul 27, 2018 around 00:11

legsarerequired
Dec 31, 2007


College Slice

Anne Whateley posted:

I knew that something was seriously wrong. I didn't know if it was narcolepsy or another sleep disorder, but like, in December I would walk to classes in only a T-shirt, thinking the cold would wake me up, and as soon as I sat down I'd fall asleep.

God, my friend was telling me how he used to sneak into the walk-in refridgerator at his old job because nothing else would wake him up.

Milo and POTUS
Sep 3, 2017

I will not shut up about the Mighty Morphin Power Rangers. I talk about them all the time and work them into every conversation I have. I built a shrine in my room for the yellow one who died because sadly no one noticed because she died around 9/11. Wanna see it?


legsarerequired posted:

God, my friend was telling me how he used to sneak into the walk-in refridgerator at his old job because nothing else would wake him up.

Nothing puts me to sleep faster than the cold. If it's hot, it's like the worst sleep patterns you've ever seen. This has nothing to do with narcolepsy, and I don't want to hijack the thread. I did have a sleep study done and they said there was nothing physiologically wrong with me but man I've had sleep problems forever.

legsarerequired
Dec 31, 2007


College Slice

Milo and POTUS posted:

Nothing puts me to sleep faster than the cold. If it's hot, it's like the worst sleep patterns you've ever seen. This has nothing to do with narcolepsy, and I don't want to hijack the thread. I did have a sleep study done and they said there was nothing physiologically wrong with me but man I've had sleep problems forever.

I'm so sorry that you're going through this. That sounds so frustrating.

You don't have to answer either of these questions if they're boring/intrusive/rude/etc, but if you don't mind my asking--
- was the sleep study in-lab (you stayed over night somewhere) or was it a take-home sleep study? In-lab studies can gather more information than take-home studies, although insurance companies are sometimes loathe to cover them.
- did you see the results yourself, or were you only told the results over the phone? Medical professionals are human and can sometimes make mistakes.
- (especially if you were only told the results over the phone instead of seeing them yourself): what kind of medical professional told you that nothing was found? ie, a general practitioner, an ENT, a neurologist, someone with or without a background in sleep medicine. Sometimes it can make a difference if you're talking to someone who works with sleep disorders all day and may have multiple patients with uncommon disorders, as opposed to someone who only has a few patients with sleep problems and doesn't really deal with many people that have the less common disorders. I think sleep apnea is so common that some ENTs/GPs/dentists can recognize the symptoms, but if you have a less common disorder, they might not see it as quickly as someone who talks to sleep patients all day.

Again, you don't have to answer any of these questions. I'm posting them because in 2016 my general practitioner/primary care provider (who took care of my grandfather, both of my parents, and myself until recently) told me over the phone that the 2016 sleep lab "found nothing wrong." Earlier this year, I made an appointment with a neurologist specializing in sleep disorders and I was requesting copies of my sleep labs over the years to send to the neurologist. I read the reports for myself for the first time, and I found that the 2016 sleep lab contained a note from the lab technician saying that they did not record enough sleep to draw any conclusions. My problem back then had been that I'd been falling asleep easily, but waking up an hour later feeling wide awake. As a result, they only recorded 30 minutes of sleep and they advised a repeat because 30 minutes just isn't enough time. My GP/PCP never told me any of this, just they "found nothing wrong." I think he's a good doctor because my grandfather and parents had positive experiences with him, but I'm a little shocked he didn't mention the part about advising a re-study so I'm seeking a new PCP now, haha.

It kind of hurts to think that if I had asked to see the report, I might have sought a second opinion and been working on this for years by now, but at least I'm working on it now, haha.

legsarerequired fucked around with this message at Jul 29, 2018 around 01:12

legsarerequired
Dec 31, 2007


College Slice

As an update for how things are going after nearly six weeks on Xyrem: Guess who went all day without taking a nap? That's right, this thirty-year old.

Yesterday and today, I noticed this weird fogginess that felt different than feeling tired. I tried twenty minutes of cardio to fight it off since I couldn't fall asleep and it helped a lot. I have so much more energy lately. I'm so amazed that I didn't nap today, I worked out for twenty minutes, and I hung out with some friends for 90 minutes after a long work day at the office. Normally I'm constantly fighting the need to sleep so this was all really nice. I hope this keeps going.

If things keep improving, my neurologist will help me taper down the stimulant prescribed by my previous doctor. I'm currently on 50 mg of Vyvanse and 125 mg of Armodafinil, taken in the morning. Before my neurologist added Xyrem to my regimen, they barely keep me awake for three hours before I'd fight off sleep. He added another 125 mg of Armodafinil to be taken after lunch to help me stay awake but it honestly doesn't make a difference. I'm also on levothyroxine for hypothyroidism and venlafaxine for anxiety. Weirdly, venlafaxine is speculated to sometimes help with cataplexy, which is a symptom of narcolepsy that I have never experienced. It's so strange how these brain drugs can have overlapping effects.

legsarerequired fucked around with this message at Aug 2, 2018 around 02:38

DeeplyConcerned
Apr 29, 2008



legsarerequired posted:

As an update for how things are going after nearly six weeks on Xyrem: Guess who went all day without taking a nap? That's right, this thirty-year old.

Yesterday and today, I noticed this weird fogginess that felt different than feeling tired. I tried twenty minutes of cardio to fight it off since I couldn't fall asleep and it helped a lot. I have so much more energy lately. I'm so amazed that I didn't nap today, I worked out for twenty minutes, and I hung out with some friends for 90 minutes after a long work day at the office. Normally I'm constantly fighting the need to sleep so this was all really nice. I hope this keeps going.

If things keep improving, my neurologist will help me taper down the stimulant prescribed by my previous doctor. I'm currently on 50 mg of Vyvanse and 125 mg of Armodafinil, taken in the morning. Before my neurologist added Xyrem to my regimen, they barely keep me awake for three hours before I'd fight off sleep. He added another 125 mg of Armodafinil to be taken after lunch to help me stay awake but it honestly doesn't make a difference. I'm also on levothyroxine for hypothyroidism and venlafaxine for anxiety. Weirdly, venlafaxine is speculated to sometimes help with cataplexy, which is a symptom of narcolepsy that I have never experienced. It's so strange how these brain drugs can have overlapping effects.

After hearing all this I'm going to talk to my neurologist on my next visit because the adderrall definitely has kooky side effects. Thanks for the update!

legsarerequired
Dec 31, 2007


College Slice

Good luck! I'm pretty lucky that Xyrem began working so quickly. Some people in the facebook support group I joined reported that they didn't feel alert during the day for several months after their first dose. I was really diligent about documenting my bedtimes, when I took my medicine, when I woke up the next day, my symptoms, etc, and it was very helpful to have a spreadsheet of that information when it came time to talk to my neurologist about how it was working for me.

I'm pretty happy that I'm actually feeling alert throughout the day and can actually do things after work instead of just laying in a dark room with an awful headache. But I'm also really scared. If I ever have to change insurance for any reason (like changing jobs), I'll have to worry about whether the new company's healthcare plans will cover my neurologist and/or the $10,000/month medicine that works really well with my brain.

On a different topic, does anyone here with narcolepsy notice that certain foods tend to make a difference in your symptoms? I've been cooking keto recipes for the past week after I saw lots of people in support groups reporting that going low-carb/keto decreased their symptoms. I'm really skeptical that it could make that much of a difference but I figure I don't exactly have much to lose.

legsarerequired fucked around with this message at Aug 15, 2018 around 22:46

Herstory Begins Now
Aug 5, 2003



Low carb and keto are basically cult diets at this point, take their medical claims with a mega grain of salt. If you have narcolepsy you have a neurological condition, not a surplus of rice in your diet or whatever.

As a narcoleptic, the main thing I associate with it at this point is just a sheer inescapability of the condition. Things can help manage the symptoms (by things I mean medication and sleep hygiene) but it's the most immutable thing I've ever experienced. I do notice that eating well at regular times helps a bit, but it is insignificant compared to maintaing good sleep hygiene.

legsarerequired
Dec 31, 2007


College Slice

Herstory Begins Now posted:

Low carb and keto are basically cult diets at this point, take their medical claims with a mega grain of salt. If you have narcolepsy you have a neurological condition, not a surplus of rice in your diet or whatever.

As a narcoleptic, the main thing I associate with it at this point is just a sheer inescapability of the condition. Things can help manage the symptoms (by things I mean medication and sleep hygiene) but it's the most immutable thing I've ever experienced. I do notice that eating well at regular times helps a bit, but it is insignificant compared to maintaing good sleep hygiene.

Agreed. I thought eating low-carb was making a slight improvement in my energy levels, but then I accidentally missed one of my doses of xyrem last night (xyrem is taken twice a night) and I feel like poison today. I took my first nap since the beginning of the month, even! So I think the improvement in my energy levels was due to getting consistent sleep every night with xyrem, not-so-much the dietary change.

clockwork chaos
Sep 15, 2009



Oh boy, Narcolepsy sharing thread! Lemme add my two cents to the pile

How many people do you know with narcolepsy?
I found out at my old retail job, one of the managers had narcolepsy, but she kept it hidden from everyone else.

What led to you getting diagnosed?
A whole cavalcade of problems, a very anxious girlfriend I just moved in with, and moving to a state with actual medical help and guides. Also getting insurance.

What is your treatment plan?
I take 200mg of Modafinil for my narcolepsy every day whether I need it or not.

Do you request FMLA/ADA accommodations at your job? How did your employer react?
I have never asked because I've never worked anything more than retail and lol if I would be willing to risk repercussions for asking for accommodations

How have your friends and family reacted?
ugh, most of my family in Texas are very second-guessy about my diagnosis - 'you're just tired like everyone else' 'you just need to go out more'
my girlfriend (who is now my goon wife) is very supportive and I love her very much.

If you take Xyrem, what routine works best for you?
my sleep specialist kept trying for Xyrem but no thanks oof

After your diagnosis with narcolepsy, have things improved?
things have improved alot wrt existing and learning my limits, and learning why things happen. the scariest thing is not knowing why your body doesn't work like everyone elses.

What do you do about driving?
I was too poor to afford driver's ed in high school and never took the test. Narcolepsy + red/green color weak probbo means I wouldn't be qualified anyway.

If you experience cataplexy, what is it like?
OH BOY DO I! Yeah i got the cataplexy. Bottom line - It's awful. I lose muscle tone sometimes at random, it feels. It's triggered by emotion, and my dumb brain keeps making me feel things on purpose! If something is unexpectedly funny - down i go. If I get upset, i tumble down - same If i get surprised. I'll remember a stupid joke or a meme and bust out laughing and fall over in public, people get worried and I have to embarrasedly explain that its because I'm brokebrained, not dying (yet). I walk with a cane, and because i'm almost 28 - people are always like 'you're too young for a cane' and assume I injured myself, or think its 'fake'. Like I wouldn't use it if I didn't have to, lady! I would enjoy being able to walk and have two free hands, it must be great! When I suffer a cataplectic attack, sometimes I can feel it coming on and try to brace myself against a wall or catch myself with my cane but boy does that put a lot of strain on my joints.

Anything else you want to share?
Which leads to my next part! On top of Narcolepsy, Cataplexy, Color Blindess, Clinical Major Depression, and ADHD, I also have Ehlers-Danlos Syndrome! Woo! That caused a lot of worries and problems with the diagnosis until we ruled out its effects. Mainly, my sleep specialist wanted to try stronger anti depressants to help with the cataplexy and didnt want me to hafta use my cane because 'i was so young'. Once we figured out my being in constant pain was due to my muscles and joints being constantly fatigued by my hyper-mobility, we got to settle on 90mg of Cymbalta, which has worked for me for the most part.

Lemme know If you guys have any questions for specifics, I can try my best to make answers happen.

Anne Whateley
Feb 11, 2007
i like nice words


I have Ehlers-Danlos too. According to the doctor who diagnosed me (I have no idea if this is true) almost everyone with narcolepsy has EDS, but obv not vice versa.

Xun
Apr 25, 2010

Help I can't get up I'm Gay


I’ve recently noticed that I’m really loving sleepy in class when I have no good reason for being that sleepy (including downing a ton of caffeinated soda right before) and I also sometimes loose the ability to grip things I guess I should talk to a doctor?

legsarerequired
Dec 31, 2007


College Slice

Xun posted:

I’ve recently noticed that I’m really loving sleepy in class when I have no good reason for being that sleepy (including downing a ton of caffeinated soda right before) and I also sometimes loose the ability to grip things I guess I should talk to a doctor?

There could be lots of reasons for those two tendencies! I will say that if a lot of this seems familiar to you, it might be worth finding a doctor who specializes in sleep disorders.

legsarerequired
Dec 31, 2007


College Slice

Anne Whateley posted:

I have Ehlers-Danlos too. According to the doctor who diagnosed me (I have no idea if this is true) almost everyone with narcolepsy has EDS, but obv not vice versa.

That's the first time I've heard that! It's an interesting statement because when I joined Facebook groups for people with narcolepsy, Facebook started recommending Ehlers-Danlos groups to me. I don't have it however.

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legsarerequired
Dec 31, 2007


College Slice

clockwork chaos posted:

How have your friends and family reacted?
ugh, most of my family in Texas are very second-guessy about my diagnosis - 'you're just tired like everyone else' 'you just need to go out more'
my girlfriend (who is now my goon wife) is very supportive and I love her very much.

I'm also a Texas goon and I'm pretty sure my immediate family thought this was psychosomatic until a few months ago. It really hurt feeling like my family wasn't taking me seriously about something I'd been struggling with, because they would just tell me to stop multi-tasking or stop going out. My more distant relatives, if they've heard about it, probably assume it's something I made up.

My mom believes it now, but she's also in a facebook group that claims eating keto can cure narcolepsy. I tried keto for a month and it was definitely far from a cure.

I'm dating a girl who has some kind of sleep issue--she sleeps 10-12 hours day after day and still feels tired, but due to being in Texas without insurance, it might be a while before she can get into a sleep study. I don't sleep nearly that much but it's nice to be with someone else who has a lot of sleepiness.

I'm lucky to have several IRL friends who were already diagnosed. My closest friends (who don't have the disorder) sometimes ask about my medical condition and there's sometimes a wall where they just don't have my experiences or they'll have a lot of misinformation from pop culture. When I talk to someone with narcolepsy, I'll say that I'm worried about "x" and we can focus on my concerns rather than my having to explain what "x" is and how it relates to my life in different ways. I really appreciate people showing concern and trying though, but sometimes it can be easier to talk about it with other PWN.

legsarerequired fucked around with this message at Sep 12, 2018 around 01:31

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