jackalope

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About jackalope

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  • Gender
    Female
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    London, UK
  • Interests
    music, arts research, and sleeping.
  1. They actually run a PHQ-9 screening before every appointment at the sleep clinic and I no longer even meet criteria for mild depression, but the doctor who assessed me told me that he feels screening questionnaires are worthless. Which is another reason I feel like there is no way I can win and am just being shovelled out of the system. The way he seems to work is by discounting any sources that don't fit his hypothesis which is a hard thing to push back against. I haven't been taken off the medication yet, it's just being discussed (argued about, from the sound of it). I'm trying to decide whether making a pre-emptive complaint would make sense because I have been pretty consistently dicked around for almost the entire time I've been seen in that department and I assume this means it isn't going to stop now I have a diagnosis, or if I should just keep a low profile and only take action if they do decide to take me off it. I am very good at objective letters when I need to be but am now in a position where I have to be very careful that any action I take can't be used against me. To be honest if I have to pay £20 a month for medication for the rest of my life, there are much worse things, but I am also a little afraid that if it ever stops working I will be completely and totally screwed and left without support, since I wouldn't be able to afford anything like Wakix or Xyrem out of pocket.
  2. This is great! I'm actually half-tempted to try and find and contact her. (Lovely article too.) Nothing so far has happened with either my diagnosis, referral, or medication access; I'm not sure if this is because my original consultant has taken someone to task over it!
  3. I'm confused by it too. I did go through this guy's research papers and he's very concerned with correct pathology, thinks narcolepsy is overdiagnosed in the absence of a perfect symptom profile and that that is screwing over research, so I all I can think is that it's a political move to get me out of the sleep department to make things neater for them in any trials or applications for research grants. I've been told my MSLT is worthless essentially since 'depression can give you sleep latencies as short as narcolepsy', and I can't find any evidence for that but I'm not the doctor so essentially there's nothing I can do to fight this. And if it is the case that it's a research accuracy thing I GET it - it's sacrificing the few to help the many - but I'm really not asking much of them at all. I don't mind not being eligible for trials or whatever. I didn't tell the NHS doctor he was wrong - I didn't challenge him at all except by telling him my meds were working (which was the only relevant thing I needed to let anyone know in the followup). I agreed there and then to attend a psych assessment. No conflict, no questions. Even the email I sent my private consultant was basically 'I'm confused by the follow up I had today, can you explain the rationale?'. The stupid thing is this has made me doubt everything. I cried once over this yesterday and I can't even work out if this is a reasonable thing to cry over (because nobody has taken my meds or functioning away YET) or if the fact I even did that is a sign of mental illness. I don't know what's normal human emotion and what's depression. And even if this is a normal reaction I can't show ANYTHING other than neutrality and acceptance towards it in 'public' because it won't be seen as normal. I feel like this is a Victorian hysteria diagnosis all over again!
  4. I wish I could but my GP is being contacted and she is now in charge of my prescriptions. I think the NHS gets final say. I am going to try and get my private consultant to intercept it though. I agree that all I can do is let them duke it out. I initially asked my private consultant not to be too eager to go after the NHS one since he was so angry and I didn't want to be blamed for anything he said, but the more I think about how I have to prove my own sanity in order to retain quality of life the more I think I am going to have to encourage him to properly fight it for me. They are colleagues in the same department so I am hoping my private consultant has some power to change the course of this (particularly since my private consultant is the more senior doctor of the two). I don't understand the obsession with me having to *perfectly fit* IH or be kicked out of the sleep clinic entirely when my medication is working and I don't need additional support. I may not be typical but I'm not difficult either!
  5. EVERYONE'S LEAST FAVOURITE THREAD IS BACK BUCKLE UP I have been on 200mg modafinil daily since the start of May and it has been the best month of my life. I just feel normal. No headaches, no issues sleeping, no more wired-ness, I can just go out and do normal stuff and not have to constantly budget for sleepiness all the time. My GP is supportive. I'm back at uni. It's been amazing. No complaints. I'm so happy and really enjoying my life, being productive, working hard, socialising more, it's awesome. I went back to the original NHS clinic I was first seen at for follow up, to let them know I had been privately diagnosed and treated and was doing well and did not require any more support until further notice. *drum roll* I have been undiagnosed. The consultant I saw at the NHS clinic (who had never seen me before), before I had even sat down to tell him how well I was doing, told me they want a psychiatric assessment, and want me off modafinil and on antidepressants because my sleep latency of 6 minutes combined with my sleep fragmentation is too atypical to be IH. My response to modafinil has been placebo, I've been told, and I should come off it for safety since the only explanation is depression. He has written to my GP to tell her. But I don't feel depressed AT ALL. I have contacted my private consultant (who also works at the same clinic, but now only in a research capacity; his only patients are private, not NHS) and asked him if he knows why this might have happened and he is FURIOUS, and has said 'my diagnosis stands and you should not attend the psych referral'. But if I don't attend the psych referral I will be labelled non compliant which is a sign of mental illness that can be used as more evidence to take me off modafinil. I am devastated. I don't know how it can possibly be ethical for them to do this. The last month has been the happiest and easiest and most stable of my adult life (I went back to uni and I released an album and it was STILL the easiest month of my adult life) and I feel like I must have imagined it all. i don't know what I'm hoping to achieve posting here again but I don't know who else to tell.
  6. So this evening I came across a lady on a different group I occasionally visit, who had discovered consuming cannabis as edibles seemed to alleviate her EDS significantly while smoking the equivalent amount had zero effect. Obviously, now, my 'I WANT TO KNOW WHY' brain switch has flipped. In general the other group is a *lot* less technically-minded than here (which is one of the reasons I like it here so much!) and I have quickly learnt that nobody wants to talk about the science behind stuff there, but I'm really curious and want to know why the different forms of consumption might have such a different effect on her symptoms, so obviously I immediately thought of this thread! I understand that the liver plays more of a role in metabolising edibles than inhaled cannabis and so it takes longer to reach the brain - but if inhaled cannabis is more efficient at crossing the blood-brain barrier, the opposite would be expected, right? So is this just part of the rompecabaza of neurobiological diversity as discussed further upthread, or is there a scientific reason (that we know of) that someone would be more likely to have success with an edible mode of administration? (Errr, I hope it's okay that I'm bringing a random stranger's case into this thread for my own intellectual interests, hopefully whatever the answer is may be useful in practice to someone reading.)
  7. Guessing from twitch12's NYC mention/use of 'spooked' that she's stateside, but just in case anyone from the UK reading this gets scared: even on the NHS, if you have cataplexy you will get a narcolepsy diagnosis by default (though it may still be tricky to get Xyrem unless your cataplexy is severe). Bella, regardless of where you are, given your cataplexy, I will eat my hat if you aren't diagnosed and treated quickly regardless of your MSLT. I hope the week passes quickly for you and you can get adequate medication ASAP.
  8. I was talking specifically about CBD, just to be clear, and have never used any of the psychoactive components. A meta-analysis of studies considering CBD side-effects and safety for you. Yes, it has more side-effects than, e.g., water, but in the grand scheme of over-the-counter supplements I stand by the word I used to describe it. ¯\_(ツ)_/¯ I mean, yeah, obviously do extensive research before self-medicating with anything, but IMO that includes stuff like paracetamol, this isn't somehow special just because it's a legal component of an in-many-places-illegal substance. I thought admission of previous use was not an offence in the US either. That said if you were to be spotted and your IP address passed on they would then have to go through your ISP to find out where you live, then search you for possession to see if you *were* currently committing an offence, and maybe it depends on the state but honestly I'd be pretty surprised if all that took place off the back of someone admitting to previous cannabis use! I too would be interested to hear Jason's expert take on this though. (Trivia for you: 37 British politicians have at some point publicly admitted to previous cannabis use. Which strikes me as really funny in a country that this time last year was on the brink of banning *CBD*.) The word doobie makes me laugh. As you were.
  9. I tried it when I got up every morning for three weeks or so before giving up. This was a while ago. At the time I had a misdiagnosis of CFS (didn't know then it was actually a sleep disorder at fault - I just thought sleepiness and fatigue were the same thing) and was trying, sequentially, anything I could find which was reportedly helpful for tiredness and readily available without prescription - a friend with fibromyalgia and associated fatigue recommended it. I quit when I realised I was dozing off more often and that my naps seemed to be getting longer. Very disappointing since it seems to work really well for a lot of people, including my friend who pointed me to it. I'm assuming just bad genetic/enzyme/neurological luck on my part! After I gave up with it in the mornings I experimented with it at night a couple of times since I figured since I was sleeping more when I took it it was worth a go. No noticeable effect on sleep quality, as you say, so I stopped. Chalk it up to experience I guess. It's one of those things that's so benign and easy to source I think I would have been silly not to have tried it. (Irrelevant side note: I grew to like the taste of it a lot! Leafy and earthy.)
  10. I know this is an old thread that's just been dug up but I genuinely believe one of the main reasons I went 15 years undiagnosed was because I didn't know there was a difference between sleepy/tired/fatigued. I just knew I was exhausted and thought my doctors would figure out what kind of exhausted. I think this is a linguistic change we should be encouraging amongst our clinicians and our healthy friends and family as much as, if not more than, we should be taking responsibility for it ourselves. I got slapped with a CFS label really early on which never ever fit, and when I look back I can see the reasons my doctor jumped to that conclusion were partly linguistic in origin, because all I knew was I was 'always tired'. Which is a ridiculous reason to be ill and untreated for over a decade.
  11. This is a really interesting resource, cool. Thank you for posting it. I had a not-great experience with CBD - tried it a while back hoping it would be stimulating but it hugely worsened my EDS. I know a lot of people swear by it though.
  12. I can also control my thoughts in stage 1 sleep. They're definitely weirder and drift more but I still have self-awareness in stage 1 and can direct where they go. To me it definitely feels like there's a blurry continuum between awake and stage 1. I would guess it would be impossible to detect the moment you switch over without using actual brain signals but I definitely am 'conscious' by some definition of consciousness in N1 and you almost certainly are too! The Bellabeat reallllly struggles with evening chillout time too. I wonder what metrics they use.
  13. @SnoozyBunny this is so freaking cool and you are such a smart lady. I can't wait to see what you build for the Oura, please do update on how you get on! Pre-my MSLT I also couldn't distinguish between light sleep and awake. The MSLT interestingly acted as a sort of biofeedback for me - at the end of each nap, the tech would tell me how long I'd slept even though I thought I hadn't, which made me realise what I'd always thought were just disordered, odd, slightly hallucinatory waking thoughts were actually stage 1 sleep. By the third nap I could identify when they started. So maybe using this data - particularly in short naps where you might wrongly think you're not sleeping at all - could be useful for chilling you out about your own sleep?
  14. This is just an informed consent issue and nothing more. As someone who doesn't even know anyone who's ever been drug screened at work and will probably never have kids both those downsides would be non-issues for me. Life circumstances differ and are a perfectly valid reason to consider or not consider using a treatment (for me the biggest con of cannabis would be that I'd have no idea where to source it reliably). It might well be an option for hiddenshadow. Watching this thread with interest since I also get very little slow wave sleep but given my IH diagnosis I'll never be able to access Xyrem in the UK. I mean that's the reason alprazolam isn't available here I guess. Diazepam may or may not be more likely to cause *dependency*, but I guess if you like that sort of thing it's less *fun*.
  15. With the door and windows open it doesn't get much hotter than outdoors - in the absolute height of summer I just work at a tiny patio table in the five square foot of garden we have instead, but most of the time it's ok. It's not as bad as it sounds! The Bellabeat doesn't track sleep stages but it does classify sleep into light/deep/awake. I knew this when I bought it - I just wanted to see if I really was in light sleep for most of the night as my PSG suggested, and I also wanted to track it against exercise to see if it made a difference - which was why the charging thing mattered because I wanted to wear it 24/7, and I know from a previous stint with a Pebble smart watch that my executive functioning is so terrible that if I take it off for any amount of the day to charge it, I'll never remember to put it back on. I thought that the blunt classification might mean it was more likely to get it right since the parameters were more vague, but if I'm sitting and typing after about 10pm it occasionally seems to interpret that as deep sleep, and I can also literally get up and walk around the flat and it still won't necessarily detect that I'm awake. It gets my sleeping and waking hours right about 90% of the time, and the rest I can correct the morning after - so it's been useful for tracking how many hours I was in bed but rubbish for any kind of granularity within that. I guess because the Zeo doesn't also track daytime factors charging isn't an issue. I'm really surprised nothing has come in to replace it. Why isn't there more demand for proper sleep tracking?!