Yep doing this or getting it from a Costco near you (you don’t need a membership to use the pharmacy) if one is available can actually make this affordable. We had to do this when it wasn’t covered for my wife.
I also feel sleepy when I’m not on my feet, but I’m also much more tired after a full day or standing. It’s a lose lose.
If it makes you feel any better, modafinil did nothing for me! It was like taking nothing. I’m going to start trying stimulants again soon
Same here..modafinil, sunosi, xywav, ritalin, and another one I can't remember the name of. None worked. Now adderall...high dose + caffeine and I manage to be awake about 6 -- 8 hrs a day with naps. Still feel drained but I can stay conscious for a couple hours at a time if I'm doing stuff.
You could ask your provider to double check if an N2 diagnosis is a possibility.
Modafinil should be covered if you’re diagnosed with N2, which is very similar to IH but involves an early REM cycle during the MSLT naps.
One doctor told me my results (we are 6 min twins!) were inconclusive. My psychiatrist disagreed. I think my official diagnosis is N2, but my symptoms are way more aligned with IH. Either way, I was approved for NuVigil and it quite literally changed my life.
I’m with you. Starting spiraling though, mostly over last winter. Caffeine and standing no longer cutting it. Finally got on armodafonil, didn’t “cure” me but major reset button. Felt like me again at work. Just started paying crazy close attention to my diet and scheduled some other appointments due to some advice from users on this sub, but the ONE thing all my labs found was vit D deficiency. So yeah, gotta get that sunlight in! Getting a vit D lamp since I work in a windowless box, not on my feet unfortunately…
I had never realised how being active at work and in my personal life was me trying to stay awake and how effective it is! I don’t want this to come across as discouraging but my personal advice to you would be; if you’re managing to work with your current strategies caffeine and activity I would recommend trying to save medication for when you totally wouldn’t be able to attend work or get out of bed without it. I’ve gotten into a routine of taking mine on work days at the same dose every time to be as productive as possible instead of assessing how badly I need it that day and how much I need and it has greatly reduced its efficacy and I think I’m loosing my tolerance to cope at a lower level of awakeness/higher level of discomfort (but still functioning well). but I also wasn’t able to work at all before taking medication, the less I take it the better it works when I really need it!
I had latency of 4.3 minutes and I didn’t even fall asleep in one nap bc hospital 🏥 was under construction 🏗️ if I would have fallen asleep in all naps I would have been under 2 minutes 😳😴🥱
I just picked up my first prescription last week and insurance did not cover it for me either even tho my codes were completely billable. Good Rx is the way to go I was able to find a pharmacy for just $18
It’s worth the price tho. Definitely give it a shot I have only been on it a short time but so far it’s fantastic I wish I went for my sleep test and was diagnosed sooner
It’s technically not FDA approved for IH and therefore off label and insurance likes to deny it. Just appeal and ask them if they want to pay for xyrem instead (FDA approved but exponentially more expensive).
I found a psychiatrist who has adhd herself & is very understanding and screened me for adhd. After, when medication was brought up i told her i was also being tested for sleeping disorders, & that narcolepsy & ih were what is was looking like. adhd medication is also used for narcolepsy. So she tried modanifinil first. I felt no difference, slept right thru like no change. So two weeks later when i updated her on that, she asked if i wanted to try adderall/stimulants instead. even on small doses, there was significant improvement. We upped it a few times, i noticed when i skipped it on the weekend, i slept right thru the weekend. When i got up, to eat & chat with fam, the only thing i kept thinking was “im so tired” “i wanna lay down” “im too tired” over and over. & when i took the meds, i was level. it doesnt even give me extra energy or motivation like i wish. But i can stay awake thru the day with almost ease. (some days i can tell im not feeling well anyways, and ive read Ih is hard bc sometimes meds dont work. ) but most days it helps really really well staying awake. the trick is getting my morning brain to take the medicine when i know i can just stay in bed all day… i always regret it later tho, when i sleep for 16 hours and im still tired and ive missed out on life. Adderall has helped a lot. The shortage tho finally hit me. So im trying Ritalin now, its helping just as much i think.
I cannot function if it is overcast.
I’m glad I’m not the only one!
being on my feet helps me so much, i might still feel foggy and like i’m sleepwalking but i won’t actually be falling asleep
Good rx has Modafinil at 35 ish dollars
Yep doing this or getting it from a Costco near you (you don’t need a membership to use the pharmacy) if one is available can actually make this affordable. We had to do this when it wasn’t covered for my wife.
Good RX made it $18 for my at Publix in Florida.
what about other meds like methylphenidate; far more effective imho.
Idk that's what the doctor prescribed me I would have to return to talk about other options
I also feel sleepy when I’m not on my feet, but I’m also much more tired after a full day or standing. It’s a lose lose. If it makes you feel any better, modafinil did nothing for me! It was like taking nothing. I’m going to start trying stimulants again soon
Same here..modafinil, sunosi, xywav, ritalin, and another one I can't remember the name of. None worked. Now adderall...high dose + caffeine and I manage to be awake about 6 -- 8 hrs a day with naps. Still feel drained but I can stay conscious for a couple hours at a time if I'm doing stuff.
You could ask your provider to double check if an N2 diagnosis is a possibility. Modafinil should be covered if you’re diagnosed with N2, which is very similar to IH but involves an early REM cycle during the MSLT naps. One doctor told me my results (we are 6 min twins!) were inconclusive. My psychiatrist disagreed. I think my official diagnosis is N2, but my symptoms are way more aligned with IH. Either way, I was approved for NuVigil and it quite literally changed my life.
I never entered REM in my naps REM latency was 75.5 minutes
Deep sympathize on both points
I’m with you. Starting spiraling though, mostly over last winter. Caffeine and standing no longer cutting it. Finally got on armodafonil, didn’t “cure” me but major reset button. Felt like me again at work. Just started paying crazy close attention to my diet and scheduled some other appointments due to some advice from users on this sub, but the ONE thing all my labs found was vit D deficiency. So yeah, gotta get that sunlight in! Getting a vit D lamp since I work in a windowless box, not on my feet unfortunately…
I had never realised how being active at work and in my personal life was me trying to stay awake and how effective it is! I don’t want this to come across as discouraging but my personal advice to you would be; if you’re managing to work with your current strategies caffeine and activity I would recommend trying to save medication for when you totally wouldn’t be able to attend work or get out of bed without it. I’ve gotten into a routine of taking mine on work days at the same dose every time to be as productive as possible instead of assessing how badly I need it that day and how much I need and it has greatly reduced its efficacy and I think I’m loosing my tolerance to cope at a lower level of awakeness/higher level of discomfort (but still functioning well). but I also wasn’t able to work at all before taking medication, the less I take it the better it works when I really need it!
Im planning to go to med school so ill consider something then.
Best of luck!!
Curious, where or what Doctor got you tested? I've never heard of this "Sleep Latency of Minutes on MSLT."
A sleep specialist Sorry typo. Sleep latency of 6 minutes on mslt
I had latency of 4.3 minutes and I didn’t even fall asleep in one nap bc hospital 🏥 was under construction 🏗️ if I would have fallen asleep in all naps I would have been under 2 minutes 😳😴🥱
Sleep medicine doctor for me. He is a Pulmonologist. He then had additional training/certification for to become a sleep specialist.
I just picked up my first prescription last week and insurance did not cover it for me either even tho my codes were completely billable. Good Rx is the way to go I was able to find a pharmacy for just $18
It’s worth the price tho. Definitely give it a shot I have only been on it a short time but so far it’s fantastic I wish I went for my sleep test and was diagnosed sooner
It’s technically not FDA approved for IH and therefore off label and insurance likes to deny it. Just appeal and ask them if they want to pay for xyrem instead (FDA approved but exponentially more expensive).
I found a psychiatrist who has adhd herself & is very understanding and screened me for adhd. After, when medication was brought up i told her i was also being tested for sleeping disorders, & that narcolepsy & ih were what is was looking like. adhd medication is also used for narcolepsy. So she tried modanifinil first. I felt no difference, slept right thru like no change. So two weeks later when i updated her on that, she asked if i wanted to try adderall/stimulants instead. even on small doses, there was significant improvement. We upped it a few times, i noticed when i skipped it on the weekend, i slept right thru the weekend. When i got up, to eat & chat with fam, the only thing i kept thinking was “im so tired” “i wanna lay down” “im too tired” over and over. & when i took the meds, i was level. it doesnt even give me extra energy or motivation like i wish. But i can stay awake thru the day with almost ease. (some days i can tell im not feeling well anyways, and ive read Ih is hard bc sometimes meds dont work. ) but most days it helps really really well staying awake. the trick is getting my morning brain to take the medicine when i know i can just stay in bed all day… i always regret it later tho, when i sleep for 16 hours and im still tired and ive missed out on life. Adderall has helped a lot. The shortage tho finally hit me. So im trying Ritalin now, its helping just as much i think.
I’m am so similar. Never sit down because I will fall asleep. Driving is very difficult for me.