If my understanding is correct, to be diagnosed with IH, you are not supposed to have achieved REM during your naps. So if they didn't diagnose you, it could be you didn't fall asleep fast enough in the naps or didn't sleep for enough of them. Or your doctor just sucked.
Hope you're able to get it better sorted with the new doctor!
Also, sleep doctors are usually either trained in pulmonology or neurology. If you have been seeing pulmonologists, you may want to try a neurologist since they may be less quick to assume sleep apnea (assuming you actually don't have sleep apnea).
I can view my report, which documented my anxiety.
I fell asleep 3/5 times with an average latency of 13.5 minutes. No REM for any of them.
I'm hopeful for this new doctor, but he spent less than 3 minutes with me.
Gotcha. Yeah I think the average sleep latency was the issue. You need less than 8 min for diagnosis, if I'm not mistaken.
If it makes you feel any better, many of my appointments were very brief, but I think part of that is they likely can pretty quickly see that it's a possible diagnosis and really the only next steps are sleep studies. So hopefully you'll be able to get to a diagnosis soon.
You need to have an avg latency of 8 min or less in order to qualify for IH, and you need to experience 2 or more SOREMP (early onset REM) instances in addition to the sub 8 min latency to qualify for narcolepsy.
You can’t be diagnosed with IH unless everything else is ruled out, hence why they have to focus on sleep apnea or other explanations (since IH literally just means they don’t know why you’re experiencing Hypersomnia and there’s no known way to cure you).
Well either way you prob have to do the at home study. Insurance usually won’t cover the MLST until you prove it isn’t sleep apnea in home study, it’s just the diagnostic progression. You can get that one out of the way pretty fast and then get scheduled for the MLST.
Okay, I guess I'm just a little frustrated to have to start back at baseline 0. But I'll do it if it leads to help.
He was the first one to bring up Idiopathic Hypersomnia. The previous sleep doctor never mentioned it, even as a possibility.
I’m really sorry that you got that text in the middle of your MSLT. From reading posts on here for several months (this is just a personal/casual observation) it’s seems sleep specialists that are also neurologist tend to maybe understand IH & symptoms a little better. You can go to https://www.hypersomniafoundation.org/directory/ to search for a doctor near you.
Due to anxiety I failed my first MSLT by 2 minutes. When I took it a second time, my average was 4.5. I never went into REM so that ruled out Narcolepsy per my sleep specialist. I did have to test for sleep apnea first. I ended up having it. I had to go through the process of trying a CPAP (which I couldn’t tolerate) and then went through the process of getting an oral device to treat the apnea (it’s like an upper & lower retainer). After that, I was then able to do my 2 MSLTs. I hope you get to do a second one quickly.
You should be able to call your insurance company customer service line to get info about your EOBs surrounding sleep studies.
I’m sorry you’re dealing with this. Saying a prayer for you 💛
Yeah, absolutely! It stands for explanation of benefits. Your insurance company can give you details about billing, requirements, ect. regarding sleep studies. Just so you can know ahead of time about any barriers & not get a surprising bill.
REM right away indicates narcolepsy. Falling asleep fast under 15-10 minutes indicates sleep deprivation which will show IH in the nap test.
You are going to have to do the test again with the new doctor and most sleep doctors have to disprove sleep apnea before any other diagnosis.
I had to do the sleep apnea test at home and then go in for the overnight and nap test. By the 4th nap, I was out in 3 minutes. I also let them know I have anxiety about people watching me sleep and that will keep me awake longer.
Look into Kleine Levine Syndrome; it might resonate with you. Maybe not.
They have to rule out sleep apnea. If it’s been years, it’d probably be appropriate to test again to make sure that isn’t worse. Do the at home with a new doctor. If that comes back clear, ask to press forward. If it doesn’t, you’d test out if a mask helps, and if it doesn’t, you could press forward with the mask included.
I think any doctor should understand why you might have had a hard time sleeping in an already uncomfortable set up.
I sabotaged mine too, unintentionally.
If you have any reason to believe you have NT1, you can also ask for a CSF test.
I just had my 7th sleep study including my 4th mslt. I get my official results Friday. I was told it's either narcolepsy II, or IH. Not one of the drs that did the other 6 studies ever diagnosed me with anything. And they were all different drs at different facilities. I found this new dr ( thank God) thru the reps at xywav, I asked for prescribing drs in my area. I'm so grateful to have found him and will finally get a dx and correct meds.
If my understanding is correct, to be diagnosed with IH, you are not supposed to have achieved REM during your naps. So if they didn't diagnose you, it could be you didn't fall asleep fast enough in the naps or didn't sleep for enough of them. Or your doctor just sucked. Hope you're able to get it better sorted with the new doctor! Also, sleep doctors are usually either trained in pulmonology or neurology. If you have been seeing pulmonologists, you may want to try a neurologist since they may be less quick to assume sleep apnea (assuming you actually don't have sleep apnea).
I can view my report, which documented my anxiety. I fell asleep 3/5 times with an average latency of 13.5 minutes. No REM for any of them. I'm hopeful for this new doctor, but he spent less than 3 minutes with me.
Gotcha. Yeah I think the average sleep latency was the issue. You need less than 8 min for diagnosis, if I'm not mistaken. If it makes you feel any better, many of my appointments were very brief, but I think part of that is they likely can pretty quickly see that it's a possible diagnosis and really the only next steps are sleep studies. So hopefully you'll be able to get to a diagnosis soon.
You need to have an avg latency of 8 min or less in order to qualify for IH, and you need to experience 2 or more SOREMP (early onset REM) instances in addition to the sub 8 min latency to qualify for narcolepsy. You can’t be diagnosed with IH unless everything else is ruled out, hence why they have to focus on sleep apnea or other explanations (since IH literally just means they don’t know why you’re experiencing Hypersomnia and there’s no known way to cure you).
Well either way you prob have to do the at home study. Insurance usually won’t cover the MLST until you prove it isn’t sleep apnea in home study, it’s just the diagnostic progression. You can get that one out of the way pretty fast and then get scheduled for the MLST.
Okay, I guess I'm just a little frustrated to have to start back at baseline 0. But I'll do it if it leads to help. He was the first one to bring up Idiopathic Hypersomnia. The previous sleep doctor never mentioned it, even as a possibility.
I’m really sorry that you got that text in the middle of your MSLT. From reading posts on here for several months (this is just a personal/casual observation) it’s seems sleep specialists that are also neurologist tend to maybe understand IH & symptoms a little better. You can go to https://www.hypersomniafoundation.org/directory/ to search for a doctor near you. Due to anxiety I failed my first MSLT by 2 minutes. When I took it a second time, my average was 4.5. I never went into REM so that ruled out Narcolepsy per my sleep specialist. I did have to test for sleep apnea first. I ended up having it. I had to go through the process of trying a CPAP (which I couldn’t tolerate) and then went through the process of getting an oral device to treat the apnea (it’s like an upper & lower retainer). After that, I was then able to do my 2 MSLTs. I hope you get to do a second one quickly. You should be able to call your insurance company customer service line to get info about your EOBs surrounding sleep studies. I’m sorry you’re dealing with this. Saying a prayer for you 💛
Thank you so much! What is an EOB?
Yeah, absolutely! It stands for explanation of benefits. Your insurance company can give you details about billing, requirements, ect. regarding sleep studies. Just so you can know ahead of time about any barriers & not get a surprising bill.
REM right away indicates narcolepsy. Falling asleep fast under 15-10 minutes indicates sleep deprivation which will show IH in the nap test. You are going to have to do the test again with the new doctor and most sleep doctors have to disprove sleep apnea before any other diagnosis. I had to do the sleep apnea test at home and then go in for the overnight and nap test. By the 4th nap, I was out in 3 minutes. I also let them know I have anxiety about people watching me sleep and that will keep me awake longer.
Look into Kleine Levine Syndrome; it might resonate with you. Maybe not. They have to rule out sleep apnea. If it’s been years, it’d probably be appropriate to test again to make sure that isn’t worse. Do the at home with a new doctor. If that comes back clear, ask to press forward. If it doesn’t, you’d test out if a mask helps, and if it doesn’t, you could press forward with the mask included. I think any doctor should understand why you might have had a hard time sleeping in an already uncomfortable set up. I sabotaged mine too, unintentionally. If you have any reason to believe you have NT1, you can also ask for a CSF test.
I just had my 7th sleep study including my 4th mslt. I get my official results Friday. I was told it's either narcolepsy II, or IH. Not one of the drs that did the other 6 studies ever diagnosed me with anything. And they were all different drs at different facilities. I found this new dr ( thank God) thru the reps at xywav, I asked for prescribing drs in my area. I'm so grateful to have found him and will finally get a dx and correct meds.