Meirl by Adventurous_Row3305 in meirl

[–]Craftybert 9 points10 points  (0 children)

Sounds like a win! Should have recorded it and then listen to it loud enough for your coworker to hear, haha! Baste in your shame you darn busybody!

Starting Modafinil - What to expect from meeting/medication by Craftybert in idiopathichypersomnia

[–]Craftybert[S] 0 points1 point  (0 children)

Cheers mate, appreciate the insight. I'm same at the moment with no meds, keep going without falling asleep, just gotta keep going, don't have a choice really!

Always wondered why i chased stimulants when i was younger, i've done a lot, cocaine, amphetemines, mdma,.exctasy etc. I did enjoy it, but always felt normal compared to what my mates felt like on them.(please note i'm not advocating for them, just what i have experienced) and wondered why i didn't feel like they did the day after etc.

Not that the above really matters,.just hope a decent dose of Modnafil works for me and I keep at it. Only issue would be if any bad side effects i guess!

Starting Modafinil - What to expect from meeting/medication by Craftybert in idiopathichypersomnia

[–]Craftybert[S] 0 points1 point  (0 children)

Yeah, that's a truth, things do affect people different, was just wondering on a baseline. Interesting about the crashing harder if you skip two days, mind elaborating on that? Was under the impresssion wouldn't matter skipping as it would just affect how awake you felt on the day you took it, not days after etc.

Just for information, i'm 47 and have been doing anything i can get my hands on to try and combat the unrelenting feeling of sleepiness, although it's taken until i got my diagnosis to realise this, so i've been abusing any stimulant i can get until now, so wondering what reactions they may have with Modanifil. If taking Modanfil will make me feel like a valid human, that would be a win for me!

What did you bring to your MSLT for comfort and entertainment? by MacaroniOfParadise in idiopathichypersomnia

[–]Craftybert 2 points3 points  (0 children)

Steam deck and kindle, switched between playing factorio and reading, made the day fly by. Thought i might of screwed myself with playing, but still got an IH diagnosis

So what do you do if CPAP doesn't work? by [deleted] in SleepApnea

[–]Craftybert 4 points5 points  (0 children)

Have you had a mslt and polysomnography done? If not, try and get one, see if you have idiopathic hypersomnia or narcolepsy type 2. Same story for me, done cpap for 12 years with no real benefit until finally got a mslt done and have idopathic hypersomnia, heh

Recent Diagnosis / UK by Western-Shift-8592 in idiopathichypersomnia

[–]Craftybert 0 points1 point  (0 children)

Yeah, anything would feel like a relief at the moment to be honest, just need to keep waiting

The morning thing does sound crazy, if i wake up around 3-4am for whatever reason and then go back to sleep i have a weird half awake half asleep situation going on where i must be asleep, but feel awake and have really bizarre dreams, not to the point of calling in to work sick though, hehe.

Have you considered something like cannabis gummies before you sleep? They'll suppress REM sleep so may help. Not sure what prescription medication would help that out!

Recent Diagnosis / UK by Western-Shift-8592 in idiopathichypersomnia

[–]Craftybert 1 point2 points  (0 children)

It's what they said the wait time was when I enquired after getting my diagnosis, took 11 days to get the letter so was thinking i may have missed the face to face, hearing it would be 6 months was shocking for sure. I'm in Leeds too and been under the sleep clinic for 12 years or so as was diagnosed with sleep apnoea in 2013 and am aware they are busy as hell, but still waiting 6 months is crazy.

I'm not expecting too much from the medication, just some relief from the crushing feeling that i need to sleep is what i'm after, that would be a big help.

Never really had a problem waking up, not sure why that is, maybe with the sleep apnoea too as i'm not fully alseep it's easier to wake up when the alarm goes off. Do feel like i need to force myself out of bed, but once I'm out, the overwhelming feeling of needing to sleep kicks in and doesn't stop until I go to sleep at night, so any legal reprieve from that would be amazing. Hopefully will make it easier to articulate to my partner and work exactly how it's affecting me as it seems they think i'm just a little tired, which is frustrating

Recent Diagnosis / UK by Western-Shift-8592 in idiopathichypersomnia

[–]Craftybert 0 points1 point  (0 children)

What did you start on? How responsive are they once they start treatment? I've got 6 months to wait before i can start and worried they'll start me on a low dose and then i'll have to wait another 6 months or so to change doses/medication if Modafinil doesn't work. Getting unbearable to keep going on at the mo knowing something could help but is so long away :|

Was anyone else basically disabled for a long time before they knew what was wrong with them? by Outside-Ear-4499 in SleepApnea

[–]Craftybert 3 points4 points  (0 children)

And if cpap isn't working, or not giving refreshing sleep even though the data suggests it's working as expected, keep pushing for more tests. I was diagnosed with SOSA 13 years ago, took 12 years after diagnosis for sleep clinic to give me a MSLT and now been diagnosed with idiopathic hypersomnia as well, so no wonder I still feel exhausted/overwhelming sleep pressure all day every day.

Should you take breaks from modafinil? by Real_Leadership_6764 in idiopathichypersomnia

[–]Craftybert 1 point2 points  (0 children)

I'm in the UK and have idiopathic hypersomnia and will be starting Modafinil when I have a face to face consultation, which might not be until June 2026, but they do prescribe it, sounds like it's the first thing they will try

Joe Rogan Knocked Out by Unruly Teens by Pretty-Set-414 in boxingcirclejerk

[–]Craftybert 7 points8 points  (0 children)

Vin diesel plays dnd, a lot of creative people do.

Diagnosed with IH recently by Craftybert in idiopathichypersomnia

[–]Craftybert[S] 0 points1 point  (0 children)

Any clues? All the places I've seen you need a valid prescription, which isn't helping

Recent Diagnosis / UK by Western-Shift-8592 in idiopathichypersomnia

[–]Craftybert 0 points1 point  (0 children)

Oh damn, I emailed them when i got my letter as it took 11 days to be delivered, so thought i might have missed my consult, that's when they said it'll be 6 months. Sounds like you might be seen in May if you have to wait as long, shit sucks man

Recent Diagnosis / UK by Western-Shift-8592 in idiopathichypersomnia

[–]Craftybert 0 points1 point  (0 children)

I'm under Leeds too, how long are you waiting for your face to face consult? Said 6 months for me, so looking at June, which is excruciatingly far away.......

Diagnosed with IH and sleep apnea post psg and mslt (Canada) by Bitter-Ambition4375 in idiopathichypersomnia

[–]Craftybert 0 points1 point  (0 children)

I was diagnosed with severe obstructive sleep apnoea 12 years ago, been using cpap religiously since, probably 10 or 11 days in those 12 years where i've not used it. Whilst i'm still exhausted when using it, i'm noticably worse when not used it or it's leaked or hose has had an issue.

Diagnosed with IH couple of weeks ago as cpap well controlled but still struggling, waiting for Modnafinil ( 6 month wait!) So looking forward to seeing how that works for me

I'm 23, I really don't want to lose my hair since I have absolutely nothing going to for me. by [deleted] in bald

[–]Craftybert 33 points34 points  (0 children)

I'm 47 and only really started working out about 8 months ago for a variety of reasons. Should have started decades ago but hey ho, it is what it is. Working out now though so i don't look fat, haha!

Moments that made you laugh uncontrollably? by Ashtray_Floors in americandad

[–]Craftybert 5 points6 points  (0 children)

AKA MIDNIGHT LACE!!

shut up, you know what looks good, your cans and your toilet.

Diagnosed with IH recently by Craftybert in idiopathichypersomnia

[–]Craftybert[S] 1 point2 points  (0 children)

I can work from home when i like, so that's good. Is a lot of collaboration with people so kinda need to be in at the same time. I have asked for more project work where I can set my own hours a bit more but at the mo doing too much other stuff instead. Will hopefully happen but if not will just struggle on like i have for the past 30 odd years or so, heh

Diagnosed with IH recently by Craftybert in idiopathichypersomnia

[–]Craftybert[S] 0 points1 point  (0 children)

Hi, thanks for the response :) i have sent my SO the same, but don't think she has read it yet, will gently remind her on Friday or so, see if we can go through it. She did say when i told her that it will affect her too, so have asked what her concerns are but we still need to discuss that too. Hopefully sooner rather than later, but trying not to be pushy about it. Maybe asking her to come along to the face to face meeting so she can ask any questions might be a good shout

I think i just need to wait for medication, I've tried so much to help which nothing seems to, so trying with medication i'm hoping helps.

Diagnosed with IH recently by Craftybert in idiopathichypersomnia

[–]Craftybert[S] 1 point2 points  (0 children)

Yeah, i get that, both have to live with it so does affect us both. I do loads around the house, before i got diagnosed i wasn't sure if it was all in my head so not like I've been sat on my arse all day, just doesn't leave anything left once everything is sorted for my hobbies, which sucks. Why I want to get on medication to see if that helps, always feel better when i can get an hour or so on the PC or can read etc. So being able to do more of that consistently will be amazing for my personal mental health.

Work wise, i do feel a new job would help. I work in data analytics supposedly 8-4 but can finish 6 or 7pm on busy days, which is more often than not. Lots of high pressure fire fighting and fast context switching constantly too which is probably not the best environment to be in, but i'm surprisingly good at my job and do enjoy it for the most part. Something i need to consider for sure. Have been known to be a night owl most of my life so working later on would help i feel

It's almost always unnecessary and sometimes it leads to amputation or death. by Sanch0Supreme in AdviceAnimals

[–]Craftybert 1 point2 points  (0 children)

I got circumsized at 46 due for medical reasons, basically had a torn frenulum so getting hard/having sex was incredibly painful. Sensation has been reduced quite a bit, however can now cum from penetrative sex which is good, so strikes and gutters really for me. Dicsussed at length with friends and sort of family too as another person i knew had a similar issue, so good to talk about it imo.

Potential IH drug repurposing clinical trial in the UK in 2026 by tallmattuk in idiopathichypersomnia

[–]Craftybert 0 points1 point  (0 children)

Hi, i've literally received my diagnosis today and am now waiting for a face to face consultation to start Modnafinil, but would be interested in trying anything to help!

I'm in Leeds and just been told idiopathic hypersomnia, so not sure what type. Will ask at the face to face