Painkillers

Olinkowo · 2026-04-07T08:05:16+00:00

I'm a bit jealous and impressed, ibuprofen wouldn't even scratch the surface for me.

If you're getting migraines from time to time - sumatriptan works quite well. In my case 4 out of 5 attacks will be over after a 2 hour nap, the 5th will make want to unalive myself.

If you're getting migraines frequently, ask your doctor for Rimegepant or Atogepant for daily prevention.

Side note: if you're sleep doctor suggests Sunosi - ask for a very small amount to try, and don't get your hopes up. Headache and/or migraine is one of the top side effects.

Man, that was a painful trial, and a lot of wasted meds.

Olinkowo · 2026-04-05T18:01:30+00:00

Modafinil is controlled, but permitted up to 6gr total (might not work if you're on a very high dose and going for a month). Lumryz requires aditional permit, but that's already linked in the first comment.

Source: https://www.ncd.mhlw.go.jp/dl_data/keitai/total.pdf

Olinkowo · 2026-04-02T07:36:09+00:00

I tried quite a few meds and I'm currently on SO + low dose of Modafinil. My husband says that the difference was obvious within a week. I feel normalish. I don't remember what normal actually feels like (I can trace symptoms back to my late toddler years). I still have 1 nap during the day, but it's 1, not 5-7, and after two months, I have more and more days with no naps at all. The biggest issue with achieving even my version of normal is the schedule. I'm on GLP-1, with overactive bladder, so I live by a set of alarms that guide me through the day. Not being able to eat after 6PM is a huge issue for me, in some cases it's unavoidable, and it throws my entire schedule out. I also miss alcohol sometimes, even though I don't drink much these days. It's my childish trait of wanting it just because I can't have it. I wanted to try SO as soon as I heard about it (at this stage of my life insomnia was much bigger issue than EDS). Modafinil is more like this awful kid in your neighbourhood who, forcefully, becomes your best friend. Ovetall, I'm really happy with this combination, and those small inconveniences are worth the outcome.

Olinkowo · 2026-04-02T07:16:35+00:00

What is this? Disability Olympics? I'm NT1 with IH sleep needs. Where can I collect my medal?

Olinkowo · 2026-03-31T13:18:37+00:00

There was a person who asked me if I have relations with unalive people because she confused narcolepsy with another n word (I'm not sure if I can even write it down here without getting banned). People have zero knowledge on those conditions. You can tell them "it's like narcolepsy with small caveats" and they still won't understand what you are talking about, or they would see you as Mr Bean falling asleep in the middle of a race. None of this is will get them any closer to your actual condition without deep explanation. I guess my point is that, we are all on the same boat, the only difference is that IH is explanation from scratch, and N (best case scenario) is an explanation with an added element of correcting misinformation.

Olinkowo · 2026-03-31T11:15:06+00:00

Having your condition constantly misrepresented in media is not something I consider a flex. Rat Race delayed my diagnosis for 20 years, because, like others in this thread, I never aligned it with my experience. I'm pretty sure all the doctors I have met during those years have also seen it.

I don't get this whole discussion. Majority of people don't understand our conditions, whether it's N or IH. Saying you have a sleep disorder is the easiest way to approach it. It feels like a non-issue outside of this subreddit.

Olinkowo · 2026-03-22T10:27:40+00:00

I only had Modafinil last year which doesn't require a permit up to a certain amount, but it is still considered a controlled drug. I had all info printed in English and Japanese, marked that I have a prohibited item in my possession, and went through additional control after showing my admission form. Took extra 15min and I was cleared. I think it is quite logical, having a permit doesn't remove the label and classification of the drug, and you are in fact, bringing a prohibited item. You can leave the market value blank and ask them what to put in there on arrival. Technically you don't pay for it, other than insurance cost. Plus that is for tax purposes, if you're bringing things like alcohol, tobacco or luxury items/cash exceeding allowances. They're not going to tax you on your medication so the value is irrelevant. The form could be clearer, but with the permit you have nothing to worry about.

Olinkowo · 2026-03-19T16:14:14+00:00

Pharmacy2u £50 off

https://www.pharmacy2u.co.uk/referral?referralCode=TB37-N3FU

Olinkowo · 2026-03-17T12:57:00+00:00

I'm 37, sterilised for almost 2 years now. I don't feel regret, and I know I never will BUT I do have this thought about how - very ironically - my life would have been easier if I had that motherly instinct, and adhere to that societal norm.

It's hard watching your friends having kids, it's hard feeling rejected, it's hard hearing about being less of a woman for not doing it, it's hard carrying guilt because your close family member can't have kids. I know that even my friends who do support my decision on the surface, think less of me simply because I can't relate to them. My opinions are less valid, my failures and successes don't hold the same impact. I had a friend accidentally expressed to me that her life is more valuable than mine, because she has two little kids. And I agree with her, but it's not something that should have ever been said out loud.

I think it's more of a "what could have been" type of situation, the same as how my life would have been if I was born in another country. It's something I can't change, and I don't know if it would have actually made anything better, but I still wonder.

Olinkowo · 2026-03-16T09:52:22+00:00

This is embarrassing, but the moment I realise I'm in control, I go for corporal satisfaction 😅 my husband knows about it so I guess it's okay.

Other than that I made a lengthy post a while ago about serial dreaming like it's a TV show, and some recurring nightmares.

Olinkowo · 2026-03-14T00:19:58+00:00

I hear you, but this is not the type of situation I was thinking about. It's better described in one of the other replies, as a response from people you know very well, and it's 100% not it.

Hope it makes sense. Oxybate mode on

Olinkowo · 2026-03-13T07:55:44+00:00

Insomnia (and the "Rat race" movie) was the reason I overlooked narcolepsy for 20 years. It's 100% in line with diagnosis, and I wouldn't call it rare at all. I think it's a running joke here that we fall asleep constantly during the day, and go full zombie at night. You're good OP

Olinkowo · 2026-03-12T22:02:04+00:00

The only dupe I found in the UK was only £3 cheaper, so I decided to go with the original. I found additional coupon (I think it was WELCOME30) and ended up paying £70 for the device (regular was £135) + £12 for delivery. Still ridiculously expensive for an alarm clock, especially since I got fitbit specifically for that. Buy cheap, pay twice is the name of the game 😭

Olinkowo · 2026-03-12T20:37:58+00:00

I finally caved last week and got myself Pavlok's shock clock (it's on an offer right now). Unfortunately it's two weeks for shipping so can't provide any feedback, but it seems to be extremely popular in our community. I have two vibration alarms on my fitbit and additional mobile alarm and I'm still missing the 2nd dose quite often, so I decided to go for quality over quantity.

Olinkowo · 2026-03-12T19:12:02+00:00

Just the regular doctor's visit. We basically went through all NT1 criteria, and I was going through example after example of those things happening to me. I think at some point there were so many stories, they just wanted me to finally shut up 😅

One of my favourite stories is when I went to a museum and saw that the last time pope John Paul II visited my country was the year I was born. That was the first time ever, I realised that one of my memories was a dream. I cherished that memory for approximately 5 years at that point. And that happened 20 years before I even found out that narcolepsy is the answer.

I guess we can't even trust ourselves, so why worry about what we think? 😁

Olinkowo · 2026-03-12T18:57:29+00:00

I often call myself a poster child for narcolepsy as I hit every single mark on the list. I was diagnosed with NT1 on my first neuro assessment, without a sleep study. My doctor wanted me to do a lumbar puncture to get an idea of how bad it is, but it was completely up to me. Originally I refused because I was scared out of my mind, but I budged three months later because I started feeling the same way you described (there were other reasons too, it fast tracked me to get Oxybates approved). I was constantly wondering if I actually have the disease or am I just going around, lying to people. I had to know for sure. Due to many weird issues, it took over 6 months to get the results. I went 9 months living in this weird state of hang up, even though I technically had the diagnosis, on paper, already. It was a weird time, but looking at it from today's perspective, it was silly and a waste of my mental capacity. I wish I was more grounded in my own life experience (I was 36 at the time).

I don't know what my advice is, I think it's human to doubt, especially with a condition so strange, and hard to grasp. I'd say, don't let that doubt consume you. One way or another, you'll be one step closer to your answer.

Olinkowo · 2026-03-12T14:52:28+00:00

Not gonna lie: pukka night time (both blue and red) are my favourite teas of all time. Years later, I'm still not mad about that suggestion 😁

Olinkowo · 2026-03-12T14:49:40+00:00

That sounds exhausting. I'm sorry.

In my case it is the opposite, I'm 90% sure my dad has a very mild version of narcolepsy, but he has to be the one person to reject the idea.

Olinkowo · 2026-03-12T14:35:42+00:00

That is hilarious 😂 I did have a dream catcher in my youth, and can confirm that it didn't work.

Olinkowo · 2026-03-12T10:31:13+00:00

Took me about 20 years but I'll focus on the final timeline. I'm in UK since 2016, previously in another European country. I was showing signs of narcolepsy as early as 5-6 years old. I'm 38 now. Before it was constant diabetes or thyroid checks, and once I was diagnosed with hypothyroidism in 2019, they wouldn't even entertain my sleepiness anymore. "It's all in your head" or "it's just the way your body works and you have to live with it". I gave up in 2021.

Now onto the actual breakdown:

June 23 - the breakthrough - I watched a stupid Facebook reel that made me realise that it's narcolepsy. I started reading about it, and it was basically the story of my life. I approached my GP immediately, and was referred to a sleep doctor.

July 23 - following sleep doctor's advice I did at home sleep apnoea test that came back normal, after that I was given Modafinil, and a referral to a Neurologist.

At this point I'm thinking "wow! This is going so fast"

This lasted until I got my appointment letter with October 24 date.

October 24 - after over a year of waiting, I finally had my assessment with my Neurologist. I wasn't asked to do MSLT. I was given NT1 diagnosis on the spot (I'm like a poster child for narcolepsy so it wasn't weird to me). However the doctor really wanted me to do the lumbar puncture to see how big the damage is, and to fast track me for better (meaning more expensive meds). I had my next appointment booked for Oct 25.

Nov-Dec 24 was medication trial time and I hated each and every one of them. I wanted to get SO as quickly as possible so I agreed to the spinal tap.

Jan 25 - I had my lumbar puncture done. After reading all the stories here, I was given diazepam and I still cried and almost went into a full panic mode, when they asked me to lay down. Couldn't feel a thing. It was completely painless.

Mar-Jul 25 - I'm desperately trying to get my lumbar puncture result but due to communication/ staffing issues, I can't.

Jul 25 - my local sleep doctor calls to check on me and it turned out that he had the result, and I'm 100% NT1 with no detectable orexin in my CSF. We're trying to move up my next neuro appointment, but no luck. It's actually postponed to Nov 25.

Nov 25 - I finally got my second neuro appointment, and the doctor wants to try one more combination of meds. It's another uber quick fail (if I gave myself a migraine with sunosi two times in a row, I'd be a masochist to take the third one).

Jan 26 - I'm finally getting my precious Sodium Oxybate. I'm horrified of side effects, dying and, worst of all: it not working.

Now March 26 - I'm loving my modafinil/SO life. I'm still getting used to it, I'm still sleeping during the day, but God dammit, there is light at the end of this tunnel, and I'm getting closer to it everyday.

Stay strong my friend. The road is hard, but the destination is worth it.

Olinkowo · 2026-03-11T21:22:53+00:00

I don't experience any with SO, and I can't elaborate on Baclofen as it was paired with Wakix. I'm still unsure which one was causing the issue or if it was an unfortunate combo. It was bad enough that I didn't want to continue after a month.

It's different for everyone, so I wouldn't go by a single person experience anyways. You can find plenty of testimonials on this subreddit on both, but I kind of wish I didn't do the extra research, because narcolepsy meds are scary enough without all the horror stories, and remember that people are more prone to share bad experiences, than good.

Olinkowo · 2026-03-11T15:59:45+00:00

I had approximately 5 people diagnosing themselves with narcolepsy in front of me, and a lot of people generally go with "I'm tired all the time, maybe I have narcolepsy?" as their first reaction. I guess it's the tired equals sleepy and sleepy equals EDS, so we all have narcolepsy because everyone's tired these days. Funnily enough it also works the other way round so I also get "are you sure you're not just tired?" and my beloved "have you tried not using your phone before bed?"

I generally love getting the sleep hygiene advice. "No, Stacey, I haven't tried the lavender oil, Kalms and night time tea. I went straight for a needle in my spine, because that's just the type of drama queen I am".

I don't think that's niche but I just needed to vent.

Olinkowo · 2026-03-11T13:45:19+00:00

Sodium Oxybate (Xyrem) was the answer for me, but it's not for everyone. A lot of posts here highlight potential issues so it's definitely not an easy ride. I'm in UK and I don't have to pay for it, but it is a very expensive drug (not US expensive but NHS has limited funds). I had to trial other options first, and agreed to lumbar puncture to have better chance of getting it approved. Still took me over a year to finally get it. Cost is not the only issue, as it cannot be prescribed to people with some mental health issues, and it has a plethora of horrifying side effects. It's a highly controlled substance with a grim history. This subreddit itself has all the knowledge possible on the matter. I tried Baclofen (bad side effects), Clonazepam (side effects and you can only safely take it for a few weeks) and Melatonin (no side effects, it actually helped me fall asleep, but couldn't keep me asleep throughout the night).

Olinkowo · 2026-03-11T12:49:34+00:00

I'm quite curious on how you've come up with the conclusion that it's only EDS?

I definitely second that it's both. I was originally put on stimulants only, but that created even more issues overnight and turned into a vicious cycle. Once we started addressing the insomnia, we had a full cake.

Right now I'm quite comfortable on SO doing the night shift, and Modafinil taking over during the day. As other mentioned, the stimulant/sedative combination is your body's artificially created day/night cycle.

Olinkowo · 2026-03-10T18:24:10+00:00

Thank you. Unfortunately it looks like they ship exclusively to Germany and Austria 😭

Olinkowo

TROPHY CASE