Sleep Saga 3: I'm Still Tired

[zenolalia]

It's the next day now, and I've spent most of my conscious hours cycling through a few states of mind. Incoherent rage, leading to a complete certainty that I am making everything up because why would my doctor look me in the eyes and functionally just tell me to get fucked, leading to an overwhelming guilt that maybe I'm just doing this all to myself and there's nothing wrong with me and if I just tried harder I would be fine, leading to frantic research binges, leading to incoherent rage.

I've learned a lot about narcolepsy. More and more, the condition fits. Sudden, rapid weight gain is literally one of the primary diagnostic symptoms of narcolepsy, even. So is inability to lose weight even when eating at a level that could be classed as starvation depending on the situational factors. Most narcoleptics lose the ability to identify feelings of hunger, which is a problem I've had for years. 80% of narcoleptics have persistent migraines, and the longer it's untreated the worse the migraines tend to get, which also fits. Until yesterday I literally thought everyone started dreaming before they fell asleep, I thought dream-hallucinations were normal.

Narcoleptics often fall asleep at the "wrong" times and can't sleep at the "right" ones, but don't have a consistent offset circadian rhythm, which is another long term confounding factor that has prevented me from correctly self-diagnosing this condition and managing treatment on my own or seeking appropriate care in a hostile medical environment, because so do I. Narcolepsy also strongly correlates to temperature intolerance/sensitivity, another long term symptom that I don't even remember to discuss anymore because at this point it's so far down the list of things I cope with on a daily basis that it just sounds like fucking whining.

It's a singular diagnosis that literally explains everything.

I'm really, legitimately entranced by the possibility of this diagnosis. It could actually be a real solution. And one of the fucking medications used for narcolepsy treatment is even ritalin which I was on for a little while as a child and had a positive reaction to, though these days apparently that's a "third choice" medication rather than a first try one.

Which is why it's so intensely frustrating that this doctor keeps presenting sleep apnea even after it should have been ruled out by a negative fucking lab.

Comments

[shadaras]

Is it possible for you to get a new doctor? Because it sounds like you've found the correct diagnosis and now just need a doctor who can actually give you the care/treatment you need.

[yvannairie]

Is there any chance you could just go past that doctor (your GP?) and straight to a specialist? Or strongarm a second opinion out of some other doctor for that matter -- I've seen a few posts advocate that you could also push your doctor to make note in your files when they refuse to perform tests that you suggest based on your own research.

And in the meanwhile -- have you tried any other over-the-counter stimulants? I know caffeine combo pills are recommended for migraine, so that's maybe an angle you could pursue.

And having said that, the degree to which you're not being listened to is completely ridiculous bordering on actual incompetence on their part >:( how do you see a patient not presenting the symptoms associated with a condition and still keep insisting on that condition and not realise your head is so far up your own arse you can say hi to your spleen in person?

[zenolalia]

This doctor actually is the specialist. My GP moved up my next appointment from September to the day after tomorrow for me, and I'm going to try to talk to her about seeing if I can get the diagnosis confirmed some other way than through this specialist.

The problem is, unfortunately, the information I was looking at last night that said a lot of people move directly to confirmation-by-medication was outdated: because the medications used are stimulants and because stimulants have been more tightly regulated in recent years at the US federal level, you actually do have to have a lab test first to get them. The question is, can I get the lab test done.

The problem, of course, is that I have no money. I actually have negative money, because I'm unemployed and in debt. So, I can only go to doctors and have tests that will be entirely covered by my insurance. And there are very, very few of them in my area. It may be the case that this specialist is the only one, in which case I will either need to somehow fundraise for out of pocket testing, or continue to go untreated.

That said, the test might be covered just on the basis of a GP referral, and my GP has usually been very responsive.

But, then again again, she also referred me to a full sleep lab before, and the specialists downgraded it to the at-home apnea lab based solely on my weight. So I just. I don't know what's going to happen.

I suppose I'll just find out on Thursday, really.

[zenolalia]

My GP had a cancellation and will be able to see me much earlier than her usual 2 month backlog, so hopefully she will be able to help me out soon. I'm trying to be optimistic instead of terrified. We will see how it goes!

[yvannairie]

How is she the specialist if she's this incompetent??? Literally how do you go for medschool for half a decade only to let fatphobia rot your brain out like that? What a fucking outrage, I bet if you had the money to be able to take her to court on negligent malpractice she wouldn't be this fucking willing to not do her fucking job.

I really hope your GP can back you up on this, especially after the specialist refused to do the labs requested -- which is something you might want to bring up with your insurance people, b/c there is no case to be made about the specialist ruling narcolepsy out. It can't be argued to be overtesting.

[shadaras]

I'm glad you'll be able to see her sooner! That sounds like something worth being optimistic about, and I hope it goes well. :)

[starshipfox]

I'm sorry your doctor is so fucking awful. :( Realising that you have narcolepsy and finding a condition that explains so many of your problems is a great step forward though.

[hellofriendsiminthedark]

Fixating on one thing and then acting on the associations you have with that to the point of even denying the contrary evidence in front of your own face... and not even taking the time to consider whether that thing you're fixating on is even relevant, or whether it might be a comorbidity or a cause or an effect or a symptom or anything else.................. This doctor is a fucking mess who sounds like they've coasted by their whole career with handwaving and generalities and banked on patients being too insecure to follow up or call them out and called that success because they weren't ~wrong~.

[bookhobbit]

I have a good friend who got diagnosed with narcolepsy after a long struggle, who might be willing to discuss symptoms/experiences/yelling at doctors feelings with you? I don't know if it'd be helpful for you to at least yell at someone who Gets It (tm). If so I could ask them for permission to pass their contact info along to you. No pressure and no worries if not. Either way, good luck, doctors FRIGGIN suck.

[zenolalia]

You're welcome to pass my info along to them, though I don't know how conversational I'll be, really.

When I'm not horrified by this entire situation, I'm mostly just reeling from the fact that apparently it's not a universal experience to have your dreams start before you fall asleep? That blows my mind, like, how do you fall asleep then? What's it like? Is it like passing out but really slow?

[bookhobbit]

Understandable!

I mean I'd definitely say it's exactly like passing out but real slow. I normally have to daydream myself to sleep, which I think is an attestation of how much my dreams definitely do not start before I fall asleep. Gotta manufacture artificial, non-organic dreams, as it were.

[ruinsplume]

The medical incompetence of supposed specialists never ceases to amaze me. When you have a diagnosis that literally explains all your weird symptoms OMG I hope your GP is more responsive. I have occasionally gone to medical appointments with articles from medical journals in hand (like the Lancet or NEJM, NOT internet websites for the public) when needing to push for something, so maybe that's an option if you can find studies that are peer reviewed that back you up?

I've also read the suggestion (which I have not tried myself, so can't speak to its efficacy) of asking the doctor to put a note in your chart documenting that the doc is refusing to treat you for a condition you have every symptom of, while insisting you have another condition for which your lab results were negative. doctors are all about Cover Their Ass so maybe you can work an angle that way.

In any case, good for you for figuring out the very likely cause of your health problems. I'm crossing my fingers that you get the care you need. Don't give up.

[anarfea]

I'm so sorry. Searching for a diagnosis sucks. You know your own body. Advocate for yourself.