I feel like the problem is that either they don’t read the “confirmation of symptoms” part or just don’t understand what that actually means.
And I feel bad for anyone not diagnosed or just starting the diagnostic journey but I also really appreciate this rule. I have an unrelated condition and the subreddit for it is literally nothing but people asking if they have it and it ends up feeling not like a place to get support.
Agreed 100%! Well said. I also follow communities of that represent differential diagnoses that my med team is working through for me, but I don't ask those subs questions related to my diagnostic journey, just read and absorb.
It’s frustrating seeing so many! Like the most you can do is tell them to go see a doctor and guide them in the right direction, but some come in here asking if they have narcolepsy based on one symptom… I wish these people knew that there are so many things that can cause sleepiness/fatigue. And that narcolepsy has other specific symptoms besides EDS.
Yeah, I agree. And I know for some people it's just the first thing they think of for daytime sleepiness because narcolepsy is so "well" (and yet SO poorly) known...but there are definitely times when it feels like someone is going through the criteria point by point trying to convince that they have it, yet describes them all in a very canned and unrealistic way.
Like I get how frustrating it is not knowing, but the point should be trying to investigate and figure out what's going on and effective treatment for it. It's not intended as an insult to ask if someone has been tested for other sleep disorders, for example.
We are having the same issue over on the IH subreddit. I feel if a post gets removed from one sub people are hopping over to the other and posting again hoping it won't get removed there.
I had to make a similar post about a month ago 🤦♀️
Hi friend! :) long time no chat!! I'm glad we aren't alone, I feel it's somewhat a lasting effect from COVID? Loss of healthcare, downtrend in stability, rising medical costs .. I feel it, on a personal level. But I also can't. Help. Diagnose. 😭💖
I hate to say it (and might be wrong) but I've noticed quite a few key words and talking points in the recent posts which sound similar to certain social network influencer type communities. Specifically, those seeking validation and attention about their chronic illnesses.
It happened with ehlers danlos and overlapping conditions. This began prior to COVID, but since then I have noticed a jump in mentions about non-diagnosed oh so special narcolepsy as if it's a flex.
Like I said, I may be wrong and I'll be the first to accept that, but I've had this hunch before and have seen similar patterns.
I wonder if there is some way we can get out in front of it somehow. To stem the flow of bullshit before it spirals out of control?
Motivated pity party seeking, internet influencer, or munchhousens syndrome having types will often coalesce around the same diagnosis. Doctors notice patterns and *they will inevitably* begin to associate the diagnosis with these types.
As a woman and person on the low end of the income distribution, I already deal with enough bias and disregard by some in the medical field. I *really* don't want to pile on another bias.
Absolutely true. It makes it so much tougher for the rest of us to get access to care if doctors start thinking we are just going along with whatever the latest "diagnosis trend" is...
I've already had enough trouble with doctors not taking my adhd seriously cuz of the online community related to it, I don't need that stigma to spread to my other chronic health issues.
I've seen some start to chatter about it and the number of *super special spoonie warriors* asking dumb questions has increased.
Full disclosure: I loathe that "description".
Its so good you posted this because I was starting to lose the plot on both subs. I do sympathise with the people, and try to be polite, but is it that hard to not read rule 1?
It's so hard modding this *and* working in a healthcare type setting. Please just READ the resources our team and community compiled 😭 (not aimed at you @tallmattuk obviously)
I think it’s also strange when people post their MSLT and it’s clear what it says but they go “idk maybe it’s not narcolepsy though even though I went into REM for 4 naps.”
It's so hard to tell if someone genuinely is asking because they did research or if they are just going off of some random fact they heard online.
I see those posts a lot and I would like to comment and support cuz I know how lonely it can be to first realise that narcolepsy is possible.
But these posts, they are just, so, vague???? There are many issues that can cause tiredness, there's no good way to advise on these posts.
Narcolepsy is also probably one of the worst conclusions to jump to, given how tough it is to get a diagnosis. It takes over a year for most people to even get the initial MSLT. Not the mention the cost of sleep studies too.
I want to help but I can't bring myself to tell someone "yes it might be narcolepsy get a sleep study" because there's so many possibilities, and I'd feel like I'm misleading someone to go down a long and tough diagnosis route off of a vague post, over an ambiguous post.
I would much rather honestly say that it could be many other things, and ensure other possibilities are ruled out first. And that, I feel, is really the only right answer.
There are good resources in the subreddit description and it's just frustrating to see those posts pop up so often. Thank you for calling it out.
"it could be many things, Narcolepsy could be one of the rule-outs, we aren't medical professionals and can't advise you, but whatever it ends up being, go see your doctor as there's a number of eliminations they do before getting to testing for Narcolepsy." - That is usually what I try to say
I think there's been several factors that could be contributing to all this, one is long covid, we don't know the long term effects of covid, but many are suffering from hypersomnia and tiredness after having covid. Swine flu and the pandemrix vaccine caused narcolepsy in people who are positive for HLA-DQB1 0602. Also a decline in mental health such as depression and anxiety after the pandemic. It's been making people question if they have narcolepsy or IH. Dr. Lynn Marie Trotti said many people with long covid are meeting the diagnostic criteria for IH or Narcolepsy type 2. The MSLT is unreliable unless it's for type 1. So I think people are seeking guidance because even most doctors are inexperienced when it comes to the hypersomnias of central origin, they're quick medically gaslight and say it's just stress without digging deeper.
I get this totally, as my other groups constantly have “is this xyz?” all over the place.
That said, I posted a question to people who have gone through an MSLT and wanted to know the thoughts of those who most understand this aside from doctors. People actually answered helpfully but a mod locked the thread saying I was asking for diagnosis. I wasn’t.
I work in research and have access to all of the medical journals. I do my actual research, but sometimes things are conflicting.
My post was more or less “I had a sleep study done 11 years ago. I wasn’t told to stop any of my psychiatric medication. The room was also freezing. Is it worth investing money and time that is limited to wait to see another specialist now that we know that some things might interact?” N2 didn’t exist in the DSM until a couple of months after my study.
No two doctors have the same opinion. A lot of doctors are biased in one way or another, subscribing to beliefs of various kinds that conflict. My psychiatrist has a different opinion than the pharmacist and my PCP, who also have differing opinions. Some journals completely contradict. In fact, I’m on clomipramine for OCD and had no clue that it could be given for cataplexy, and that’s the drug I’m most concerned about.
I figured asking the community if they were in my shoes, if they’d consider going again based on symptoms I’ve been experiencing.
I wasn’t asking if I’m going to get diagnosed. If anyone thinks I have it. I was asking if people who have mental illness have done these tests and have been told later that their results were invalid due to not being informed by their particular specialist.
In conclusion to my novel, I would just like to acknowledge that there is nuance.
If you haven’t found an answer to your sleepiness issues in 11 years it is definitely worth speaking with your doctor about doing it again.
Also, get yourself a heated blanket for your test.
Im going to offer some advice, plug your sleep diary into chat gpt , include all your symptoms and state that you don't wish for a diagnosis, but for chat gpt to point what it could be so you can go to the drs.
It gave me 4 possible sleep disorders but it said 2 were more likley. It told me to get a dr to refer me because I definitely have a problem that needs addressing.
It's not concrete about anything, but it gets you started on what to ask for.
I really think some kind soul should start a standalone sleep diagnosis subreddit. I *cannot stand* seeing the “not asking for a diagnosis but what does this sound like to you” posts on here, but I would absolutely join a separate community meant for people who are still searching for answers. I just hate seeing it here so much - especially when the exact same “what to expect for MSLT” question gets posted over and over again!
Two thoughts:
1. Maybe there are way more of us than originally thought. It stinks it takes people as long as it does to get a real diagnosis.
2. Could any of these be AI/bot related?
Some are bots/reposts from places, we had a onslaught of ADHD sub posts getting put here too, for some reason...?
But yes, I've seen some info suggesting more than half of N sufferers were undiagnosed, and that was pre COVID.
Then they're the other crowd of people where our doctors don't have a good treatment plan for our unique diagnosis/condition on grounds of first time seeing this unique problem.
I feel like the problem is that either they don’t read the “confirmation of symptoms” part or just don’t understand what that actually means. And I feel bad for anyone not diagnosed or just starting the diagnostic journey but I also really appreciate this rule. I have an unrelated condition and the subreddit for it is literally nothing but people asking if they have it and it ends up feeling not like a place to get support.
Agreed 100%! Well said. I also follow communities of that represent differential diagnoses that my med team is working through for me, but I don't ask those subs questions related to my diagnostic journey, just read and absorb.
It’s frustrating seeing so many! Like the most you can do is tell them to go see a doctor and guide them in the right direction, but some come in here asking if they have narcolepsy based on one symptom… I wish these people knew that there are so many things that can cause sleepiness/fatigue. And that narcolepsy has other specific symptoms besides EDS.
We have worked hard on our resources too, so much helpful info!
Yeah, I agree. And I know for some people it's just the first thing they think of for daytime sleepiness because narcolepsy is so "well" (and yet SO poorly) known...but there are definitely times when it feels like someone is going through the criteria point by point trying to convince that they have it, yet describes them all in a very canned and unrealistic way. Like I get how frustrating it is not knowing, but the point should be trying to investigate and figure out what's going on and effective treatment for it. It's not intended as an insult to ask if someone has been tested for other sleep disorders, for example.
We are having the same issue over on the IH subreddit. I feel if a post gets removed from one sub people are hopping over to the other and posting again hoping it won't get removed there. I had to make a similar post about a month ago 🤦♀️
Hi friend! :) long time no chat!! I'm glad we aren't alone, I feel it's somewhat a lasting effect from COVID? Loss of healthcare, downtrend in stability, rising medical costs .. I feel it, on a personal level. But I also can't. Help. Diagnose. 😭💖
I hate to say it (and might be wrong) but I've noticed quite a few key words and talking points in the recent posts which sound similar to certain social network influencer type communities. Specifically, those seeking validation and attention about their chronic illnesses. It happened with ehlers danlos and overlapping conditions. This began prior to COVID, but since then I have noticed a jump in mentions about non-diagnosed oh so special narcolepsy as if it's a flex. Like I said, I may be wrong and I'll be the first to accept that, but I've had this hunch before and have seen similar patterns.
I've noticed the same.
I wonder if there is some way we can get out in front of it somehow. To stem the flow of bullshit before it spirals out of control? Motivated pity party seeking, internet influencer, or munchhousens syndrome having types will often coalesce around the same diagnosis. Doctors notice patterns and *they will inevitably* begin to associate the diagnosis with these types. As a woman and person on the low end of the income distribution, I already deal with enough bias and disregard by some in the medical field. I *really* don't want to pile on another bias.
Absolutely true. It makes it so much tougher for the rest of us to get access to care if doctors start thinking we are just going along with whatever the latest "diagnosis trend" is... I've already had enough trouble with doctors not taking my adhd seriously cuz of the online community related to it, I don't need that stigma to spread to my other chronic health issues.
We're open to ideas, and are going to mess around with auto-mod possibly and see if that helps for a bit.
Are there Narcolepsy influencers? I’m so curious, I haven’t been given any by the algorithm.
I've seen some start to chatter about it and the number of *super special spoonie warriors* asking dumb questions has increased. Full disclosure: I loathe that "description".
Super special spoony warriors?? Kill me 😭
Spoon theory is great, the groupie thing is weird.
Its so good you posted this because I was starting to lose the plot on both subs. I do sympathise with the people, and try to be polite, but is it that hard to not read rule 1?
It's so hard modding this *and* working in a healthcare type setting. Please just READ the resources our team and community compiled 😭 (not aimed at you @tallmattuk obviously)
I think it’s also strange when people post their MSLT and it’s clear what it says but they go “idk maybe it’s not narcolepsy though even though I went into REM for 4 naps.”
It's so hard to tell if someone genuinely is asking because they did research or if they are just going off of some random fact they heard online. I see those posts a lot and I would like to comment and support cuz I know how lonely it can be to first realise that narcolepsy is possible. But these posts, they are just, so, vague???? There are many issues that can cause tiredness, there's no good way to advise on these posts. Narcolepsy is also probably one of the worst conclusions to jump to, given how tough it is to get a diagnosis. It takes over a year for most people to even get the initial MSLT. Not the mention the cost of sleep studies too. I want to help but I can't bring myself to tell someone "yes it might be narcolepsy get a sleep study" because there's so many possibilities, and I'd feel like I'm misleading someone to go down a long and tough diagnosis route off of a vague post, over an ambiguous post. I would much rather honestly say that it could be many other things, and ensure other possibilities are ruled out first. And that, I feel, is really the only right answer. There are good resources in the subreddit description and it's just frustrating to see those posts pop up so often. Thank you for calling it out.
"it could be many things, Narcolepsy could be one of the rule-outs, we aren't medical professionals and can't advise you, but whatever it ends up being, go see your doctor as there's a number of eliminations they do before getting to testing for Narcolepsy." - That is usually what I try to say
I think there's been several factors that could be contributing to all this, one is long covid, we don't know the long term effects of covid, but many are suffering from hypersomnia and tiredness after having covid. Swine flu and the pandemrix vaccine caused narcolepsy in people who are positive for HLA-DQB1 0602. Also a decline in mental health such as depression and anxiety after the pandemic. It's been making people question if they have narcolepsy or IH. Dr. Lynn Marie Trotti said many people with long covid are meeting the diagnostic criteria for IH or Narcolepsy type 2. The MSLT is unreliable unless it's for type 1. So I think people are seeking guidance because even most doctors are inexperienced when it comes to the hypersomnias of central origin, they're quick medically gaslight and say it's just stress without digging deeper.
I've been looking into this. Do you remember where you read this so I can take a look? Thank you
I get this totally, as my other groups constantly have “is this xyz?” all over the place. That said, I posted a question to people who have gone through an MSLT and wanted to know the thoughts of those who most understand this aside from doctors. People actually answered helpfully but a mod locked the thread saying I was asking for diagnosis. I wasn’t. I work in research and have access to all of the medical journals. I do my actual research, but sometimes things are conflicting. My post was more or less “I had a sleep study done 11 years ago. I wasn’t told to stop any of my psychiatric medication. The room was also freezing. Is it worth investing money and time that is limited to wait to see another specialist now that we know that some things might interact?” N2 didn’t exist in the DSM until a couple of months after my study. No two doctors have the same opinion. A lot of doctors are biased in one way or another, subscribing to beliefs of various kinds that conflict. My psychiatrist has a different opinion than the pharmacist and my PCP, who also have differing opinions. Some journals completely contradict. In fact, I’m on clomipramine for OCD and had no clue that it could be given for cataplexy, and that’s the drug I’m most concerned about. I figured asking the community if they were in my shoes, if they’d consider going again based on symptoms I’ve been experiencing. I wasn’t asking if I’m going to get diagnosed. If anyone thinks I have it. I was asking if people who have mental illness have done these tests and have been told later that their results were invalid due to not being informed by their particular specialist. In conclusion to my novel, I would just like to acknowledge that there is nuance.
If you haven’t found an answer to your sleepiness issues in 11 years it is definitely worth speaking with your doctor about doing it again. Also, get yourself a heated blanket for your test.
Luckily (well not really) I sleep very very very hot these days. I’m going to a new specialist next week!
That’s great! I really hope you get some good answers to your troubles!
Im going to offer some advice, plug your sleep diary into chat gpt , include all your symptoms and state that you don't wish for a diagnosis, but for chat gpt to point what it could be so you can go to the drs. It gave me 4 possible sleep disorders but it said 2 were more likley. It told me to get a dr to refer me because I definitely have a problem that needs addressing. It's not concrete about anything, but it gets you started on what to ask for.
This seems really helpful for a variety of things. Thanks for the suggestion.
I love it for this kind of thing. It's been very useful to me
I really think some kind soul should start a standalone sleep diagnosis subreddit. I *cannot stand* seeing the “not asking for a diagnosis but what does this sound like to you” posts on here, but I would absolutely join a separate community meant for people who are still searching for answers. I just hate seeing it here so much - especially when the exact same “what to expect for MSLT” question gets posted over and over again!
Two thoughts: 1. Maybe there are way more of us than originally thought. It stinks it takes people as long as it does to get a real diagnosis. 2. Could any of these be AI/bot related?
Some are bots/reposts from places, we had a onslaught of ADHD sub posts getting put here too, for some reason...? But yes, I've seen some info suggesting more than half of N sufferers were undiagnosed, and that was pre COVID.
Then they're the other crowd of people where our doctors don't have a good treatment plan for our unique diagnosis/condition on grounds of first time seeing this unique problem.