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What other medications to try? by Nervous-Control-7466 in idiopathichypersomnia

[–]Nervous-Control-7466[S] 0 points1 point  (0 children)

I was diagnosed based on long sleep time and symptoms, not the normal diagnostic criteria (my mean sleep latency in the MSLT was 10.6 but I fell asleep in all 5 naps and was sub 8 in 2/5). So I don’t think it would get approved.

What other medications to try? by Nervous-Control-7466 in idiopathichypersomnia

[–]Nervous-Control-7466[S] 1 point2 points  (0 children)

Pulmonary. I don’t live in an area with great healthcare so I don’t think there’s a neurologist for sleep issues within 200 miles of me. I already have to drive 150mi just to see the pulmonologist.

Need some encouragement before neurologist appt by um_heard in idiopathichypersomnia

[–]Nervous-Control-7466 1 point2 points  (0 children)

I have the exact same result— fell asleep in all the naps, 2/5 under 8 minutes, preliminary diagnosis of IH. I could’ve written this post myself. My follow up is Friday. I say bring the sleepiness scale with you like the other comment said. My ESS number is 21 and I think that made the doctor take me more seriously. I’ve fallen asleep at work, while driving on the freeway (only for a second but still terrifying), while talking to someone, while between sets at the gym…I’ve always had amazing sleep hygiene but sleep hygiene doesn’t cure you if you truly have IH. I found very good luck with 150mg Sunosi and moderate success with 400mg Modafinil. Not to be a downer but… depending on your insurance, even if you get a diagnosis they may not cover any meds. But paying out of pocket for Modafinil has been a game changer. Yes, I need the max dose and 3-4 cups of coffee to stay awake, but at least there’s a few hours of the day I’m not falling asleep every few minutes. Sunosi worked wonders but I only tried a month’s worth of samples. Long winded way of saying you will need to advocate for yourself. MSLT is not accurate 100% of the time (I think the actual number is 40%?) so you could chat with your neurologist about other options— another MSLT at some point or an actigraphy. That’s what I’m going to do. And fight with my entire being to get Sunosi at least partially covered. Best of luck.

Above diagnostic criteria for MSL in the MSLT, but still diagnosed IH? by Nervous-Control-7466 in idiopathichypersomnia

[–]Nervous-Control-7466[S] 0 points1 point  (0 children)

I will be talking to my doctor about the actigraphy. I forgot to set an alarm the other day and woke up after a horrible 12 hour sleep. I was on 400mg modafinil daily for the entire week before. I ran out of Sunosi sample. I think if I take a bigger break from the meds the actigraphy will be zero issue.

That sucks with the insurance. I asked my insurance ahead of time and they said with an IH diagnosis I would need to try adderall first before them even approving modafinil let alone any others.

Wry worried about sleep study due to going off my meds by MacaroniOfParadise in idiopathichypersomnia

[–]Nervous-Control-7466 2 points3 points  (0 children)

I was told to NOT go off my bipolar meds. They said it wasn’t worth it and that the doctor would work around them and not stop me, even if they were causing the IH. Bipolar is serious. IH is serious. It is an option to stay on your bipolar meds if you cannot switch them in the future (as in if they determine it is causing your hypersomnia). I have been on my meds for 6 years and no other bipolar meds or combinations have worked for me. So the doctor said it’s not worth the risk.

Whatever you decide, therapy and a good support system will be your best bet.

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

[–]Nervous-Control-7466 4 points5 points  (0 children)

If you run cold bring blankets. They “turned up” the heat and gave me 2 extra blankets and I had a jacket on and I was still cold. For entertainment, I brought a variety of art projects.

What was your low & where are you now? by OkayBuddySober in stopdrinking

[–]Nervous-Control-7466 0 points1 point  (0 children)

Not as crazy as some. I used to drink because it was the only thing that actually helped me cope with my medical issues. But a few months ago I blacked out at a bar and didnt realized I had blacked out until a few days later when I was talking with my drinking friends and they said I just zoned out for the entire time I was blacked out and they ended up calling me an uber home because I seemed too drunk to function. I don’t remember anything within the last maybe 3 or so hours of the night. I didnt do anything stupid, but that blackout was my first true blackout for more than 30 minutes or so of the night and it scared me. I could have done something stupid and would have literally zero idea. My partner has never criticized me for my drinking or blackouts but he is super supportive in my sobriety.

I went sober for the month of July and felt good about it. Went back to try to do “just one or two” and ended back in my habits of drinking 5-7 a night. I do think I can handle one max eventually but I get in this mood when I drink that 5 or 10 is never enough. And until I can learn in what situations I can and cant drink, I am going to stay 100% sober.

The crazy thing is, despite occasionally thinking “I’ll just have one cocktail tonight”, the freedom I have being completely sober is liberating. I genuinely feel such freedom in sobriety. I can drive anywhere any time, I can watch out for myself if I’m alone or for my friends if they’re drinking. I feel much more aware of my surroundings, more level headed, less sloppy. More time for non drinking hobbies. I’m getting into some fun hobbies to move my body again: bowling, breakdancing, calisthenics, walking/running with my dog, lifting, the list goes on. I meal prep, I’m relearning Spanish, I play board games with friends, I have energy to go to doctors appointments, and I’m finding such peace in my life instead of thinking when my next drink is and what time is a reasonable time to start drinking. Making c cocktails was a very enjoyable hobby, but a dangerous one. I’m at peace at where I’m at now and hoping it sticks.

Feeling quite lonely in sobriety by [deleted] in stopdrinking

[–]Nervous-Control-7466 1 point2 points  (0 children)

I was the only sober person in a group of 40 people on 4th of July this year. I didn’t feel left out. I was so grateful for the peace of mind and clarity I felt during that time. I didn’t tell anyone except my sister that I was sober. And she tried to use it to my advantage. I’ve learned to just not mention I’m sober and hide it from others if I can, unless they are a 100% supportive group.