r/N24 • u/lostdaysanddays • 2d ago
My Doctor Was Not Hopeful…
So I live in the UK and i went to see a doctor. I explained my symptoms, showed them a sleep diary and the response was not exactly a hopeful one.
My doctor asked me what i want from a diagnosis, and I explained that I wanted it to stop so I could live my life properly, she then went on to tell me that she could try and refer me to the sleep service and that they likely would not take me. She said all they would do is prescribe sleeping pills that are addictive or melatonin(which has not worked once)
I mentioned that there have been clinical trials of medication for n24 sufferers in the past and i was hoping i might be able to get it diagnosed and try to find one that may help me, but at that moment, of course I had no information to hand.
She told me she would try to get me to a sleep specialist but i wasn’t guaranteed anything but if i could find any clinical studies or trials she would contact them and explain my situation.
What i do not know is if there even are any studies or clinical trials into n24 and if there are, how do I find them?
If anyone in here knows of anything in the UK that would be of use to her, I would really greatly appreciate a DM
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u/secondhandschnitzel 2d ago
As disheartening as this is, your doctor isn’t entirely wrong while not being terribly helpful. N24 is very difficult to treat. If you haven’t already seen a sleep specialist, you should absolutely take the referral. Yes, it might not help, but there’s a non zero chance that it will. There are some medication options, nine of which are great and they don’t always work forever. For me, just discussing options with a specialist was helpful for managing my condition.
I have also found therapy helpful. I was developing a lot of fear and anxiety around sleep because it was so fraught. Therapy has helped me manage my symptoms and helps prevent sleep issues from causing cascading mental health issues for me. I’m not sure the NHS therapy options would be terribly helpful. If you have private insurance or the means to pay out of pocket seeing someone in private practice might be more helpful.
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u/lostdaysanddays 2d ago
She told me the sleep clinic might not even accept me for a refferal, even though i showed her the sleep times.
I’m not anxious about my sleep, I’m anxious that no one will ever recognize it, i know my chances of being in a study are low and ill likely never be able to be prescribed Tasimelteon but ive lost my entire 20s to this condition and my life is just too difficult to manage with it
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u/SimplyTesting Suspected N24 (undiagnosed) 2d ago
Sounds like the doctor wasn't rude, but not especially helpful either. That seems better than average especially given the state of healthcare in the UK.
I recommend looking at this regiment from u/editoreal
They talk about it more in this comment
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u/SmartQuokka 2d ago
Most people with N24 are untreatable. There are some that do respond to strict sleep hygiene/melatonin/bright light/blue light glasses but they are the minority.
Try them, read this Sub for more info.
A sleep study is a good idea to rule out other more treatable sleep issues but if you don't have them and you do have N24 then your in a bad boat.
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u/lostdaysanddays 2d ago
Melatonin, sleep hygiene, blue light restriction all failed 5 times over.
The only thing she did say was something about the “right type” of melatonin.
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u/SmartQuokka 2d ago
You need to use them very specifically to properly rule them out.
That said i know how often we get told sleep hygiene is a cure all and unless you have those specific issues they won't fix them.
I have wanted to write a guide to N24 treatments but have not been able to find the time to do it.
There is no right type of melatonin, you just have to be sure the one you are using has melatonin in it, supplements are not well regulated and fraud is rampant.
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u/lostdaysanddays 2d ago
How on earth do you know whats legit and what isnt? And more to the point, how on earth is someone supposed to live their life with it when having a job and a 25-26 hour day are two things that are incompatible with each other
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u/SmartQuokka 2d ago
How on earth do you know whats legit and what isnt?
Now you know why regulations exist and are needed.
And more to the point, how on earth is someone supposed to live their life with it when having a job and a 25-26 hour day are two things that are incompatible with each other
This is the life of the disabled, society considers us to be worthless.
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u/exfatloss 2d ago
This is the life of the disabled, society considers us to be worthless.
This is the unfortunate truth. Nobody gives a shit. Even the sleep specialists and circadian rhythm scientists don't care.
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u/SmartQuokka 2d ago edited 2d ago
Yes it is the truth about society, however i disagree with circadian rhythm scientists don't care, i recently had an appointment with a N24 specialist and they are trying to set up research studies and get funding and are hitting walls. They are collaborating with colleagues and if they got money today they have plans for patient and genetic studies that are almost shovel ready. They are even working on facilities hoping something comes through for them.
So if anyone knows a funder willing to put money on N24 please DM me now or if you see this comment in the future and i will connect you with the scientists.
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u/metacollin 2d ago
how on earth is someone supposed to live their life with it when having a job and a 25-26 hour day are two things that are incompatible with each other
In the UK, you should be protected under the 2010 Equality Act, which entitles you to reasonable accommodations in employment and education, typically in the form of a flexible work schedule. Obviously this is not a reasonable accommodation for some jobs, but it shouldn't be a problem for others.
What's important is to not get into a negative mindset about this and maintain a realistic perspective: you didn't choose to have N24, you've tried what you could to address it and it didn't work, you can work large swath of jobs and you're legally entitled to reasonable accommodation to do so.
It helps if you have a very clear and specific idea of what those accommodations might be, of course.
Even positions that can only really be done during business hours could get a lot of value from an employee that can periodically work late or during the night without having to be paid night shift pay. Maybe they have something that can't be done during business hours and having an employee who could do the work after hours on actually basis, something that normally is not something an employer can reasonably ask, would be a huge time saver for everyone else.
People aren't used to thinking about stuff this way, so you often need to put the idea in their head first, but once you have, they might see your N24 as a uniquely valuable asset.
And otherwise, you should expect accommodation if it is reasonable for them to do so.
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u/lostdaysanddays 2d ago
If the sleep clinic refuses to see me like she said they might, i cant get the diagnosis to even try and get work place accomadations.
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u/metacollin 2d ago
Also, there is medication that can treat N24 in some cases that you should give a try. Just don't get your hopes up, they don't work for everyone, but you should definitely at least give them a try. I am not sure which ones are approved/available in the UK, but they're a class of drug called melatonin agonists. There are 3 that I know of:
Ramelteon
Tasimelteon
Agomelatine
Maybe look into one of those.
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u/secondhandschnitzel 2d ago
I have found liquid melatonin to work dramatically better for me than the tablets ever did. I don’t know the reason but there may be some validity to trying a different formulation of Melatonin.
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u/lostdaysanddays 2d ago
What the brand called, i can see if its available in the uk
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u/secondhandschnitzel 2d ago
The stuff I have is called Natrol. A GP told me that with supplements, you get what you pay for so I think going with a mid range liquid helped over the dollar store tablets I initially tried. I had some much more expensive gummies that helped but not nearly as much as the liquid I use now. In theory it shouldn’t matter what formulation you use. I’ve found it to matter for me and I don’t think that’s just placebo effect. I don’t think that brand is super important but I would try a few different brands and formulations to see if any are helpful for you. I found this stuff from a reputable online shop that I was already ordering multi vitamins from. It was one of their least expensive liquid melatonin options. I’ve been using it ever since.
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u/Tall_Boi_99 2d ago
I've only ever managed to find two brands of melatonin and both are slow release pills, I stopped taking them because it was costing me £120 a year and barely worked for 4/5 months our of the 12 I just stuck with it for a while.
Most recently I tried daridorexant (only recently licensed for use in the UK) paradoxically it worked incredibly well, "sometimes" like 20 minutes and I was so sleepy I really "had" to go to bed then others it was like I didn't take it. Would have been life changing if it worked all or most of the time, also no hangover type after effects, an never felt like I wanted to take it like addictive sedatives.
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u/exfatloss 2d ago
She is right in that they have no solutions
Still weird, if you clearly have it why wouldn't she diagnose you? The diagnosis doesn't hurt, I assume? lol
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u/lostdaysanddays 2d ago
She wasnt a sleep doctor, she was a general practitioner, but my only hope if seeing a sleep doctor is asking ger to refer me
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u/editoreal 2d ago edited 2d ago
There's two things I highly recommend doing.
First, you need to devote your life to learning everything you can about navigating the NHS. This is the last time you walk into a doctor's office without being prepared for every possible contingency, without having every possible relevant study in hand. Navigating health care is, at it's core, a people skill. You have to be as charming and as sweet as you can possibly be to everyone you speak with, you can never get angry, and, while you have to get information across to a doctor who will be oblivious, you can't make them feel stupid in the process. You also have to choose your words wisely and present as little information as possible that will get the point across, as your time with a doctor is always going to be incredibly limited. You also don't want to look like a hypochondriac/kook by presenting either too much information or presenting anything controversial.
At their heart bureaucracies are people, and, while rules can seem like rigid obstacles, if you can make a friend with the person on the other side of the phone, rules can be bent. I've seen this done countless times.
These are skills that are going to take a while to develop. But you have to develop them. Your life depends on it. Not necessarily because the NHS will cure you, but, for things like accommodations.
Second, this sub is pretty active, but it's not active enough that you can ask for a DM and you'll be flooded by UK subredditors who've been successfully diagnosed and can hand hold you through the process. You need to be proactive.
Here's a google search for UK n24 reddit
Read through all these threads and DM everyone involved who's in the UK.
This post might be helpful as well:
https://www.reddit.com/r/N24/comments/p68dox/comment/h9bnxmt/
Outside of the topic of navigating the NHS, while you might be able to rely on the NHS to eventually get accommodations, the odds that they'll have a medication that can successfully treat you are abysmally low. Obviously, try every solution they offer you, but, in my experience, I was only able to entrain by treating myself- and treating myself involved throwing everything and anything I possibly could at it.
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u/lostdaysanddays 2d ago
I know, i went to them, i had my diary, a list if symptoms and all that, i knew i was starting a battle with a beaurocracy today.
The real issue is you cant build a relationship with the doctors here, every time you go, its a different doctor that they give you, where i live is very urban and they just run people through like theyre herding cattle and trying to get rid of you as fast as possible.
If they refuse to refer me to a sleep doctor in the face if all this, ill likely have to find a new doctor and start again
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u/editoreal 2d ago edited 2d ago
I know, it's incredibly disheartening. It's easy to feel powerless. Try to fight that feeling. I've seen some people get unbelievably phenomenal treatment from socialized health care by using the right strategies.
Regarding your 'urban' setting- because people are being herded like cattle/treated so poorly, these patients tend to be pretty pissed off and very unpleasant to talk to, so when you talk to a receptionist and are sweet as sugar, you're in a better position to make a friend. In a way, you're developing seduction skills.
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u/lostdaysanddays 2d ago
I fear i may have to move to a new doctor with fewer patients, the receptionist is always different too…Honestly id say my doctors is a pretty badly run outfit. Years ago i had a better doctor is a smaller town and i usually saw the same doctor and she helped me a lot with my autism assessment, she would have been much better with this.
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u/lostdaysanddays 2d ago
I didn’t expect this much help with this guys, i appreciate it a whole lot.
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u/nashkw N24 (Clinically diagnosed) 1d ago
hey there, fellow uk based n24 sufferer here. i also had to fight with my gp to get a referral, they even went so far as telling me there werent any sleep clinics & i had to tell them no they do exist and here is the phone number for one near me lol. after asking several times i was eventually referred, and then had a single appointment with a doctor in my city who looked at my sleep graph and instantly recognised "a free running sleep phased disorder". he wrote me a letter saying as much, shipped me out a light box, and set me up with a lifetime prescription for melatonin. he sent me away saying it didnt make sense to make a follow up appointment because aside from that there was nothing he could do. not exactly a miracle cure but i did get a free light box, a free prescription, and a letter that allowed me to access things like accommodations at my uni. luckily since then ive had success with the VLiDACMel protocol (check my profile for details) but if that hadnt worked for me then i probably wouldntve gotten any further help from the nhs
if you want to pursue diagnosis i would recommend coming prepared to your next gp appointment with details about a nearby sleep clinic you want referred to. the circadian sleep disorders network has a list of doctors people have reported as helpful so you could have a look there in the uk section https://www.circadiansleepdisorders.org/doctors.php
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u/gostaks 2d ago
Unfortunately the vast majority of studies on n24 are done on people who are totally blind. Sighted n24 is not well known among the medical community and likely has many different causes depending on the person.
If you're willing to go down a rabbit hole, by far the best resource on sighted n24 is LRQ's vlidacmel protocol. https://circadiaware.github.io/VLiDACMel-entrainment-therapy-non24/SleepNon24VLiDACMel.html