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Post by vagueandrandom on Feb 11, 2016 12:15:34 GMT
That's one of the reasons I hate speaking on the phone. . .get flustered, then don't know what they're saying and get more confused. . . then get off the phone (or hang up) and don't know what was said. It can happen face to face too. I've had to make another appointment with my GP to ask them what they said in my last appointment. Glad it turned out OK in the end
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Post by contrarymary on Feb 11, 2016 15:03:23 GMT
i make everyone contact me in writing - by email or letter - because i so struggle on the phone. I always say that i need this as an adjustment because of problems with working memory, thinking, understanding, processing information etc. I never give phone numbers on the forms unless it's compulsory, adnd then i put an asterisk with a note to explain i can't manage phone calls. so far, even the DWP have respected my needs with this and no-one's called me do you have help with the appeal marionk ?
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Post by annie on Feb 13, 2016 12:39:27 GMT
If you are thinking of approaching your Gp for a referral to an NHS ADHD specialist, have a look at the FAQ's section.
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Post by marionk on Feb 14, 2016 17:11:20 GMT
Well, I got two and two half things done in my usual scatterbrained way, and I've made progress in understanding and packing my new toys (camcorder and phone) ready for my trip.
I'm going to pass on any more tidying up, I found the adapter, and put it in the smaller going away bag, ready.
I have a substitute for the money belt, and have decided against the chocolate cookies I was going to make, so I need to find another recipe before I can cook yummmies anyway.
I was flagging by midday, but still pushed myself to do some pruning, so ugh! to tidying up, I've had enough!
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Post by marionk on Mar 7, 2016 18:26:26 GMT
Finally remembered why I was headed to Yahoo, and forgot again . . . Sigh! I did finally remember. I needed to check an e-mail to see if it was relevant to the time and date on my calendar.
I did eventually track down what it was about, but now it clashes with an expected phone call from my GP.
I hope the GP 'phones before I have to go out.
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Post by marionk on Mar 9, 2016 5:29:17 GMT
Okay, maybe it's time I jotted down all the questions the specialist asked (a long time ago), that I failed to answer properly because I didn't understand what she was asking.
Did I have any behavioural problems as a child? No, I was a good little girl. Except, now I know that ADHD isn't actually about bad behaviour. But I don't think she even suggested ADHD, and even if she had, she would have had to explain in no uncertain terms that it wasn't just about badly behaved children. Clearly from the question though, she didn't know either anyway.
Actually, I think that explains it. She did ask a bunch of other questions spread over a period of time, that with hindsight, suggests she suspected ADHD, but that particular question, was clearly the main sticking point.
It seems that 9/10 of getting a proper diagnosis, is our own realisation that ADHD isn't about badly behaved children.
. . . And now I can't remember any of the other questionsx_x
Thoughts racing, does NOT equate to the phrase in books, where the hero is thinking on his feet. It means things like jumping two steps ahead when asked a question, and interpreting what you think they want to know and answering that instead. It means your head being too full of thoughts to go to sleep. It means making a connection with something someone just said and something you heard a long time ago about something vaguely related then forgetting what they said in the first place. It means constantly going over things people said and what it might mean, even when you're trying to do other things.
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Post by marionk on Mar 11, 2016 8:09:44 GMT
Okay, had a chat on the phone with my GP, about a referral. Seems I need a referral even to see a private specialist!
Anyways, he didn't completely pooh pooh the idea, told me to make an appointment with any GP and to write a list of symptoms before aged 12.
So I'm back to trying to remember ancient history!
Devil's advocate
Untangling wool
Conversation with headmaster
Poor sense of time is a symptom too?
Impatience
Miss Turner said I spent too long tidying my desk rather than getting down to work
Learning joined up writing
Chocolate bar incident
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Post by annie on Mar 11, 2016 10:42:32 GMT
Hi there
Well done for putting your "toe in the water" by at least having a conversation with your Gp.
Go to the FAQ's part of the site which describes how best to prepare for your Gp appointment. There's some rating scales in there which would certainly be worth filling in. Also, do you have copies of school reports? As you know, the Gp doesn't need detailed info about your earlier life experiences. All he needs is sufficient markers to suggest ADHD as a possibility.
Find out from your Gp whether your local CCG has commissioned an Adult ADHD service. If not, it's likely he will refer you to your local general Mental Health service.
Not all private Psychiatrists require a referral from a gGp but obviously it is best to have your Gp on board, in terms of future treatment.
Good luck.
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Post by vagueandrandom on Mar 11, 2016 10:43:55 GMT
At least they're open to the idea. Make sure you write everything down. I was lucky to have some school reports which said that I chatted too much, daydreamed, didn't finish work, was capable when interested, but rarely worked to my full potential . . not much individually, but a pattern when looked at together. I'm going to repeat what l say to everyone going to the GP to ask for referral. . prepare an answer for the question "and what do you hope to gain from a diagnosis?" I had this several times and my GP seemed to think that I could manage well enough without and that there might be stigma and 'there's no treatment' anyway (untrue) just KNOWING for sure is a great relief and there IS treatment and help specific to ADHD You may have been having treatment for other MH issues and they haven't worked . . I wonder why? Good Luck
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Post by marionk on Mar 12, 2016 22:02:02 GMT
Thanks for the pointers. It's precisely because none of the medication/treatment I've had for 'other mh issues' has actually helped at all that I am having to go back for another referral. Hopefully, now that I have a clearer picture of what my problems really are (no longer depressed, stressed, or out of proportion anxiousness, to muddy the waters), I will get a diagnosis that a) I can agree with, and b) has medication that might actually help! So if he asks the question: "and what do you hope to gain from a diagnosis?" The answer is, "Some treatment that actually works!"
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Post by marionk on Mar 18, 2016 13:45:06 GMT
To do list for tomorrow (going out in a minute, so no more will get done today). Sort out eggsPut washing out and fetched it in again too, even if it was a bit late find and throw out already sorted rubbish well, some of it have a go at sorting through some more stuff for stuff to chuck out did a bit of that too work on 'lean to' wood store start rocket stove not having a good day, basically I've postponed everything to tomorrow dealt with a scary looking letter this morning and just haven't managed get moving since, finally started to tidy around my computer, and that's a bit much too, Got distracted by the telly, into looking up CFS, which I need research a bit more before I see the specialist I'd completely forgotten about it so I need to add it to the list of things to mention, also ASD thinking of lists reminded me that I downloaded a diary app this morning too, but I can't actually find it on the phone, so I need to sort that out too.
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Post by marionk on Mar 21, 2016 13:06:39 GMT
Ugh, getting seriously bogged down trying to find an app for organising stuff, and getting stupidly distracted too.
I need to collect my copy of the referral letter from the surgery, and maybe phone the specialist. Put washing out
throw out a bag of rubbishreward myself with working on 'lean to' wood store or rocket stove *sigh* Maybe I should just get out there and start on the rocket stove. I'm having one of those, too flaked to move days Yesterday I remembered a bunch of stuff that should be on my to do lists and I can't face most of them, so I have these nasty 'I should be doing . . . ' feelings that are making me go Waaaahhhhh and run away. I noted some of them down in a (new to me) list book but I can barely face looking at them. On the plus side, trying to make a list organiser system that will work for me, I dived into the black hole that is the other side of my bed (where everything eventually slides off to) to try and find my post it notes, and came back out with a bagful of rubbish! Ok, time to face the new list organiser. . .
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Post by marionk on Mar 24, 2016 9:54:25 GMT
Not going so brilliantly with the new to-do system, I left it in the car yesterday!
I'll go and fetch it in a bit but I need to write down the things to go on my every day check list before I forget them.
Check calendar, important to-do's and shopping list Check weather Write today's activity list Laundry Chickens Breakfast Bag of rubbish
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Post by marionk on May 16, 2016 6:43:33 GMT
Ok, so when I use the word addiction, I actually mean tolerance that is so bad that you desperately need to keep taking the stuff to stay normal.
That's what happened when I took Seroxat several years ago, and I'm really scared that it will happen again with dexamphetamine.
I was worried that it would happen with mph too, but it doesn't seem to be so, and in any case I can reduce the dose gradually if it does eventually happen.
When I took Seroxat, for the first two weeks, from day one, it made me very whizzy, gradually diminishing until I was as miserable as I was before I took it.
The doctor said "it's not supposed to work like that" (it's effect was supposed to build up gradually) so what I think happened was that my serotonin levels were not low, or at least not as low as to need the dose that I was taking, so that the boost from the seroxat raised them way too high, giving me a high, that my body objected to and so worked to reduce the amount available by it's own means.
I did ask for a lower dose, but she refused. I think I was probably taking the lowest dose tablets available though, so she probably couldn't give me a lower dose anyway.
Ok, that's Seroxat/serotonin, now for quetiapine.
I'm not really sure what it's supposed to affect, but it didn't give me a high, nor did I notice any immediate difference when I finally gave up on it.
It's effects, while I hadn't noticed them as such at the time, took a very long time to recover from.
to be continued . . .
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Post by marionk on May 16, 2016 7:06:25 GMT
By the time I stopped taking it, it had become very hard to think at all. Serious brain fog!
So, anyway, basically, I don't ever want to take anything that has that effect again.
Oddly, the one effect I did notice at the time as definitely attributable to it (sedative effect shortly after taking it) did not diminish, (and obviously stopped when I stopped taking it).
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Post by marionk on May 30, 2016 8:34:02 GMT
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Post by marionk on May 30, 2016 9:13:23 GMT
Nicotine?
Supposed to help working memory because it mimics or binds to the same receptors as acetylcholine or something, anyway:
Thinking about nicotine made me think about smoking, and istr people saying it calms them down, also hearing that it's actually a stimulant.
This links in my mind with ADHD meds being stimulants, but actually having a calming effect on ADHD symptoms . . . could it be that the people that are calmed by smoking tobacco have ADHD?
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Post by contrarymary on May 30, 2016 10:25:56 GMT
hi marionk all my symptoms got worse when i stopped smoking, and which was what led me to adhd. when i say all my symptoms i mean thinking, remembering, focusing, planning - all the executive function stuff - plus physical stuff like tics. i found some research about tics, tourettes and nicotine, ADHD and nicotine, depression and nicotine, all sorts of mental health issues and nicotine ... it seems there's plenty out there but not so many joined dots. i think there was some stuff about it on my first hello post, and some other threads in the forum if you feel like having a search... back to my hermitage
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Post by marionk on Jun 28, 2016 3:37:45 GMT
back to quetiapine and insomnia. I stopped taking it when I started taking seroxat as well, and I didn't get any boost at all from it. I figured that must mean that the quetiapine had trashed my serotonin levels already, and that was the last straw. A long time later when my faculties started to recover, I found that actually although called an SSRI quetiapine acts by blocking serotonin uptake. So, whatever my serotonin levels were, the seroxat's effects were not going to be noticeable. Insomnia . . . I've had trouble getting to sleep for a very very long time, but when I suffered a traumatic bereavement, made it much much worse, as, lying in bed with nothing to distract me, I would end up crying myself to sleep, and so developed a kind of sleep phobia, so that i couldn't face going to bed until I was totally knackered and knew I would be asleep as soon as my head hit the pillow. Quetiapine, pretty much knocked me out about an hour after taking it, so I was happy to keep taking it, as it meant I could get to sleep at a more sensible hour. Unfortunately, it didn't help me be any more awake/capable in the day, and that was the main reason I stopped taking it. Since I stopped taking it, I have once again found myself unable to go to sleep until cream crackered, even though I am no longer grieving. I also can't sleep more than a few hours. More recently something has make me more wakeful in the daytime, but I can't remember if it was the mph, or the diet change/chocolate and or the realisation that I have ADHD releasing me from the 'wth is wrong with me' funk. Dark chocolate helps, and I think the quetiapine must have done some serious damage to my serotonin/melatonin system. I had been better on mph as well, but the Strattera is making me worse again. Strattera boosts noradrenalin levels, but thankfully doesn't have the nasty effects that stress related adrenaline has on me. It does make me irritable, although that seems to have abated, but the inability to stay asleep more than a couple of hours is getting worse, just like when I stopped taking quetiapine. So, did the quetiapine also block adrenalin? What does coming off quetiapine have in common with the effects of Strattera? eta, not sure when the inability to stay asleep more than a couple of hours started. All I can remember clearly it that after I stopped taking the quetiapine, I started to pay more attention to how much sleep I was actually getting, and that I noticed I was only getting a few hours (3 1/2?) in one chunk. At least with the Strattera I haven't gone back to having to fend off sleep all day, so it's not all bad. Pity it makes me cranky about doing anything though. eta2 Seems I was having trouble staying asleep before I stopped taking the strattera, and that it's chocolate that has helped big time with daytime wakefulness. So that makes the question: What do Strattera and Quetiapine have in common (re inablility to stay asleep? Also WHEN did the inability to stay asleep adtually start? start?
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Post by vagueandrandom on Jun 28, 2016 10:37:00 GMT
I'm not sure about the meds marionk but I've always had trouble sleeping. . . getting to sleep. . even when I'm exhausted, my brain wakes up late at night and stops me from falling asleep. . . I noticed years ago, before ADHD was even a possibility in my head. . that I sleep in 3-5 hour chunks, often awake for an hour or more before I get my second sleep. I've been tracking my sleep with a variety of apps and a pebble watch for a few months now and rarely have an unbroken sleep. . . I move and wake a lot and rarely sleep more than 6.5 hours, even if I'm actually in bed trying to sleep for 10 hours. There's a lot written about ADHD and sleep problems, it seems to be quite common. A weighted blanket can help, but sometimes it makes me too hot, or I throw it off.
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Post by marionk on Jun 28, 2016 12:33:42 GMT
(Many) Years ago I used to wake at dawn, and be unable to go back to sleep.
I don't remember when I started only getting a few hours, in one go.
When my kids were babies, needing feeding in the night, I don't recall ever being wakeful, only wanting to get back to sleep, and I'd often sleep with baby beside me, so it certainly wasn't then.
I only recall taking note of how much sleep I was getting, after I started quetiapine, but I might have been having trouble even before then. I know I was having trouble getting to sleep, but can't really recall anything about quality of sleep before that.
What I am absolutely positive about is that since coming off it I have ever so gradually managed to sleep in longer chunks, and a few times recently I even managed to sleep a little over 6 hours (with chocolate). Since taking Strattera it's all gone to pot though, and I'm lucky if I get even the 3 hours that I used to get when I was at my previous worst!! I'm also more tired in the daytime, although not quite back to fighting off sleep all day.
I'm also stiff and achey even without any increase in activity levels, so that must be from the atomoxetine as well. :/
I used to occasionally wake myself with a myoclonic jerk, but it wasn't so often that it was a real problem, and it hasn't happened for months now.
Heavy blankets don't help me sleep better, they just make it harder to turn over and get comfortable again.
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Post by contrarymary on Jun 28, 2016 21:01:53 GMT
ooo vagueandrandom - where did you get your weighted blanket, and has it helped? I ws considering this a while ago, but ws put off by the expense - mainly in case it didn't work for me
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Post by marionk on Jul 3, 2016 5:06:53 GMT
For a very long time, I thought that I didn't remember stuff because I just wasn't trying hard enough. Although I kind of knew it wasn't right, because I get cross with those mnemonic geniuses that say 'anyone can do what I do just use these tricks and practise', and I do use them and do practise, and I still have a rubbish memory for names and faces etc.
I also see that most people mange to remember at least two people's names without having to concentrate on remembering one person's name for any noticeable length of time before being told the next.
So basically I have always kind of known that it takes me a lot more effort to remember things, but *thanks to* people like those geniuses I always put a lot of effort into trying to remember things that aren't always really that important, add that to the massive effort needed to recall stuff at the appropriate time, and with the absolute masses of things we have to remember to do at the right time to maintain modern independent living, and it's no wonder I'm always exhausted.
For some considerable time I have realised that even with such efforts I'm not going to remember everything, and so perhaps I should only try and remember truly vital things, but the habits of a lifetime are hard to break. I still try and remember all the little things that (almost) everyone else does manage to remember without trying, and then there's the stress and frustration . . .
finally getting sleepy again, going to try and get back to sleep before I should be giving up and getting up instead . . .
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Post by marionk on Jul 11, 2016 7:57:33 GMT
A few days ago I discovered that 1)A narcolepsy drug called Modafinil may help with ADHD 2)I may have narcolepsy 3)Ritalin can also help with narcolepsy Today I have discovered that, rather like ADHD, narcolepsy isn't what I thought it was, and that I have suffered from it for the last two years at least, quite severely! vagueandrandom do you find yourself falling asleep in in appropriate places as well?
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Post by vagueandrandom on Jul 11, 2016 10:51:04 GMT
No, marionk I find it difficult to sleep. . .FULL STOP.. However exhausted I am, I can't sleep sitting up, or in public places ie on transport. . I travelled alone to Australia once . . 24 hours with the stopover and didn't sleep at all. . . also went on an overnight ferry to Denmark and couldn't sleep in the cabin because of the engine vibrations . . . I went for a walk around the ferry just before dawn and was the only person around . . .and I got to see the sun rise . . .beautiful. . I also find it hard to nap . . but I do have a lie down for an hour sometimes and sometimes doze, but find it helps to refresh me. . The best sleep I've had recently was when I went camping on my own in Wales. . near a stream and one night it rained. . Seriously considered putting the tent up in the garden to sleep. . . I can go through tiredness and out of the other side. . Sometimes, when I can't sleep in bed, I lie on the floor. . This week, I had a couple of 7+ hours of sleep and my brain, just wouldn't wake up and function, then I had 5 hours and woke at dawn bright and alert . .same today. . I wish I was more consistent . . I hope Dex works for you, I know people who have had really positive results
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Post by marionk on Jul 11, 2016 12:16:10 GMT
Wow! Crikey! and Dayum! vagueandrandom have you seen anyone about your sleep problems? It seems that medication for ADHD is mainly effective for impulsive type, so, if like me, you are predominantly inattentive, you might get more benefit from chasing up help for your sleep problems than trying to get your GP to see sense on ADHD! You will probably get to try ADHD meds too!!
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Post by vagueandrandom on Jul 11, 2016 12:32:16 GMT
marionk I'm dx as hyperkinetic, which I thought was hyperactive/impulsive, but recently read somewhere that it is combined type. . whatever. . I'm more hyperactive. . The first couple of weeks on concerta, I slept really well, until I got used to it. I'm now taking 10mg Ritalin 3 times a day, but am trying taking it at 2 hour intervals to see if it helps at a higher dose. The ignorant psych doesn't understand ADHD and is reluctant to prescribe anything and doesn't seem to know what meds do, or therapeutic doses. . I've told him about my sleep problems and he said that there's nothing he can do about it. I was so tired when I saw him, I was having difficulty forming sentences . . This is why I'm putting my foot down and fighting for referral to the ADHD service. Maybe your ADHD psych can prescribe the meds you want?
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Post by marionk on Jul 13, 2016 5:52:54 GMT
The ignorant psych doesn't understand ADHD and is reluctant to prescribe anything and doesn't seem to know what meds do, or therapeutic doses. . I've told him about my sleep problems and he said that there's nothing he can do about it. There may well be nothing he can do about it (due to his ignorance), but there are loads of medications for sleep. Does he say why he can't do anything about it? I suggest you go back to your GP, and request that he prescribe something, or better still, refer you to someone that can. He can't deny that you have sleep problems, surely? Maybe actually say to him 'Look, forget about the ADHD for now, could you please just refer me to someone that can help sort out my sleep problems." I went to my GPs hoping they might be able to prescribe something that would help with my fatigue and insomnia, and co-incidentally perhaps also the ADHD. The GP I saw said that they couldn't prescribe (Ritalin? Modafinil? etc.?) without a specialist dx, but even though I am seeing a psych for ADHD, who might well prescribe me Modafinil etc., she still suggested referring me to or a neurologist. The 'or a neurologist' really caught my attention!!
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Post by marionk on Jul 14, 2016 4:06:11 GMT
Thanks, actually I had a really bad day yesterday. Coming off the Strattera is almost as bad as starting it was!! Which reminds me, I haven't collected the Ritalin from the dispensary. Ye gods, that makes four things I need to do today?!? Blood test, swimming . . . appointment in town to sort out my phone . . . and collect prescription ... holy carp my head will be spinning! At least I can collect the scrip on the way home, and it won't matter if I forget anyway, though they all fit together nicely, logistically speaking. Gawd, when I am I going to get new boxes and the fence sorted for the chickens?! Oh feck, swimming group was yesterday, I missed it. Oh well, maybe I'll just go on my own. Now I've had the day planned around it for so long, it'll completely throw me if I don't go after all. Or maybe I'll go ice skating instead (same venue, not a big change to plan). And I need to find the last Co-op vouchers before they expire! Face blindness, what ever causes it, has a high incidence amongst ADHDers.
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Post by marionk on Jul 18, 2016 6:26:50 GMT
marionk I'm dx as hyperkinetic, which I thought was hyperactive/impulsive, but recently read somewhere that it is combined type. . whatever. . I'm more hyperactive. . The first couple of weeks on concerta, I slept really well, until I got used to it. I'm now taking 10mg Ritalin 3 times a day, but am trying taking it at 2 hour intervals to see if it helps at a higher dose. The ignorant psych doesn't understand ADHD and is reluctant to prescribe anything and doesn't seem to know what meds do, or therapeutic doses. . I've told him about my sleep problems and he said that there's nothing he can do about it.I was so tired when I saw him, I was having difficulty forming sentences . . This is why I'm putting my foot down and fighting for referral to the ADHD service. Maybe your ADHD psych can prescribe the meds you want? I came on here to post something else entirely, but first this: You are in a very similar position to me with my long term psych a few years ago, where I kept telling her I was having trouble with memory and sleeping, except my psych didn't even tell me that she couldn't help! Go back to your GP, and tell him that you need help with your sleep problems (as well as your ADHD) but the psych said he/she? can't help with that so could he please refer you to a sleep clinic or a neurologist. If (God forbid!) he says anything like "but I thought you wanted help with ADHD" just say you do but he's not helping with that either! So in the meantime, could he please refer you to someone else. At a slight tangent, you say you can't sleep sitting up, but do you nod off? I can't actually sleep like that because I flop and that movement wakes me up again, just like the type of insomnia where, just as you are falling asleep, you realise you are falling asleep and the realisation wakes you up, but there is still that moment of sleep, and that's what counts for the Epworth test.
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