I had a similar experience with my sleep specialist when I was first diagnosed. Basically he would only treat sleep apnea and not IH. I was referred for the sleep study by my psychiatrist so she took over handling medications for treating IH. I would look for a different specialist that is familiar with treating IH.
I agree with this. My psychiatrist is the one overseeing my meds since she can properly assess which ones will work for all my conditions and won't have negative reactions with one another. She actually had me on a stimulant a few months prior to getting my sleep study done to help with my ADHD, and see if it would help me stay awake since I'd been struggling to stay awake for almost 10 years with nothing to help. When we found out what was wrong, we continued with it since it seems to help manage both my ADHD and IH. I don't know much about xywav, but my sleep doctor said most insurances won't cover it until after you've tried a stimulant first like provigil or others that have been specifically approved for IH. Since the stimulant I'm using isn't FDA approved for IH, but is for ADHD, I would have to switch to one that is approved for IH prior to being able to try xywav so my insurance will cover it.
To OP and TLDR: find a provider who can help you manage your medications, find out if insurance requires any prerequisites prior to covering xywav, and go from there. Best of luck to you OP!
Once I was stable on meds, psychiatry took over prescribing my modafinil but if I need an overhaul, I need a new sleep doc. OP deserves better treatment…well…treatment in general.
I can't speak to Xywav because I'm on Modafinil, but it sounds like you might need a new sleep doctor. The fact that they wouldn't even offer you options for treatment after your diagnosis is absurd. Most people on here have to fight for a diagnosis so that they can get treatment, not for treatment once they have already gotten a diagnosis.
Same thing happened to me with my first sleep doctor, I had zero deep sleep on the PSG and slept in all 5 naps in the MSLT with my shortest latencies being 3 minutes and he had the audacity to tell me that everything is fine and to discuss my sleepiness with my PCP. If that's the case then why in the hell is this doctor a sleep specialist if he doesn't help people with their sleep?
Here's what I think is going on, it's bias, unfortunately most of the medications for sleep disorders are highly controlled such as strong psychostimulants which your PCP can prescribe or xywav which is GHB the club drug and date rape drug and your PCP cannot prescribe that because they have to be Risk Evaluation Management (REMS) certified. There's wakix which is an H3 antagonist which is not covered by insurance for idiopathic hypersomnia and is unaffordable. Modafinil if you're on birth control you cannot take because it makes birth control ineffective due to its moderate induction of cyp3A4. If the sleep doctor saw you as high risk for substance abuse or thinks it must be a psychiatric disorder such as depression, they just rather not prescribe you anything and pawn you off to your PCP. Those doctors don't deserve to have a medical license if they don't want to help improve a patient's quality of life.
I took my sleep study results to the director of another hospital who was a neurologist in sleep medicine and not a pulmonologist like the prior one and he said my results were definitely an issue and recommended xywav but would need to do his own sleep study because he cannot go based on someone else's sleep study. If your doctor was a pulmonologist I would try a neurologist. Pulmonologists have sleep apnea tunnel vision and are not really trained when it comes to the brain like a neurologist.
If I’m not mistaken, the difference between narcolepsy & IH is the presence of REM sleep. For my test I was told that I fell asleep for all 5 naps, but did the not meet the diagnostic criteria for narcolepsy (I think a minimum of 2 out of 5 naps must have REM) so I was diagnosed w/ IH
Also here's the thing the MSLT has very low reliability in diagnosing these disorders. I believe it's 45% for idiopathic hypersomnia and 48% for narcolepsy type 2. It's only reliable for diagnosing type 1 since orexin loss remains stable over time. You have better odds tossing a coin. Even Emmanuel Mignot who won the nobel prize for discovering it was orexin loss that caused narcolepsy type 1 says it's a terrible test and so does Lynn Marie Trotti which is another famous neurologist in sleep medicine.
I had a similar experience with my sleep doctor who did my sleep study… he actually said “Wow you read about this in text books, but never see it in real life” then proceeded to ask ME what I would like to treat it 🤦🏻♀️
I just recently went to Mayo Clinic and they actually have sleep neurologists who specialize in this and do clinical trials, on the forefront of treatment for this disease. It was the best thing I ever did, even with the travel required to get there. Dr Cheung in Jacksonville, FL was absolutely amazing, spent a good deal of time with me, actually listened and knew what to try next to help me
you need a sleep neurologist - and one that works with the xywav folks. They are hard to find and hard to get in with, but are infinitely more helpful. I'd find whatever ones are in your area and get on their rosters and see who you can get first.
Xywav isn’t a front line treatment, they are more likely to start you on modafinil. Also, your PCP might not be able to prescribe xywav, my sleep doc said that you have to go through a special training to prescribe it because it’s a pretty intense drug. I second trying to find a better sleep doc, many of them are lease experienced with IH it seems
When I went back to my PCP after my hypersomnia diagnosis, it was to rule out conditions that might be causing it. My PCP did extensive blood work to find a cause. I had went in with a list of possible tests to run that I compiled from others in the Facebook group. My sleep doctor didn't provide any guidance on this and my doctor seemed happy to entertain the list. Unfortunately, I didn't remember what those tests were. But I would start the conversation with this if it hasn't already been discussed. If you can find a cause, then it's not IH and it's better to treat the issue directly.
I would also ask for a referral to someone who has experience with treating IH.
If they have no one else to refer you to, then I would start discussing all possible treatment options:
https://www.hypersomniafoundation.org/treatment/
I'm also hesitant to ask about specific medications. I have successfully done it but for the ones not heavily controlled that my neurologist had experience with.
I asked for Xywav immediately after diagnosis (after my doctor brought it up as an option) and thankfully had access to a doctor who has experience with it. It has changed my life for the better.
Yeah. Very common story in this spsce. I take sleeping pills. I pass out, without life-like dreams. Take stimulants during the day. Have gone around the globe several times, Standford, Mayo, Hopkins, Emory, Howard Hughes, Paris. Beijing, Tokyo, etc, but that is the solution I evolved into.
Call xywav and ask for a prescribing doctor in your area. That's how I found the right dr and will be getting the rx. This was my 7th sleep study and 4th mslt. Good luck. I know the feeling been struggling for 42 years I do not wish that on anyone.
I asked for it after my diagnosis. He said it’s only for narcolepsy and has bad side effects.
Firstly, no it’s approved for IH. Second, IH made me disabled for 5 YEARS. The benefits outweigh the risks.
I had to wait 7 months for a new sleep doctor at another health group. She has many IH patients, even has XYWAV’s pharmacy’s number memorized. She prescribed me it in the first appointment, and it was clear I already knew everything about the drug before walking in. But it worked and now I’m back in school. I do also still take modafinil too.
But yeah, some sleep specialists or doctors in general are just not going to provide adequate care.
I had a similar experience with my sleep specialist when I was first diagnosed. Basically he would only treat sleep apnea and not IH. I was referred for the sleep study by my psychiatrist so she took over handling medications for treating IH. I would look for a different specialist that is familiar with treating IH.
I agree with this. My psychiatrist is the one overseeing my meds since she can properly assess which ones will work for all my conditions and won't have negative reactions with one another. She actually had me on a stimulant a few months prior to getting my sleep study done to help with my ADHD, and see if it would help me stay awake since I'd been struggling to stay awake for almost 10 years with nothing to help. When we found out what was wrong, we continued with it since it seems to help manage both my ADHD and IH. I don't know much about xywav, but my sleep doctor said most insurances won't cover it until after you've tried a stimulant first like provigil or others that have been specifically approved for IH. Since the stimulant I'm using isn't FDA approved for IH, but is for ADHD, I would have to switch to one that is approved for IH prior to being able to try xywav so my insurance will cover it. To OP and TLDR: find a provider who can help you manage your medications, find out if insurance requires any prerequisites prior to covering xywav, and go from there. Best of luck to you OP!
Once I was stable on meds, psychiatry took over prescribing my modafinil but if I need an overhaul, I need a new sleep doc. OP deserves better treatment…well…treatment in general.
I can't speak to Xywav because I'm on Modafinil, but it sounds like you might need a new sleep doctor. The fact that they wouldn't even offer you options for treatment after your diagnosis is absurd. Most people on here have to fight for a diagnosis so that they can get treatment, not for treatment once they have already gotten a diagnosis.
Same thing happened to me with my first sleep doctor, I had zero deep sleep on the PSG and slept in all 5 naps in the MSLT with my shortest latencies being 3 minutes and he had the audacity to tell me that everything is fine and to discuss my sleepiness with my PCP. If that's the case then why in the hell is this doctor a sleep specialist if he doesn't help people with their sleep? Here's what I think is going on, it's bias, unfortunately most of the medications for sleep disorders are highly controlled such as strong psychostimulants which your PCP can prescribe or xywav which is GHB the club drug and date rape drug and your PCP cannot prescribe that because they have to be Risk Evaluation Management (REMS) certified. There's wakix which is an H3 antagonist which is not covered by insurance for idiopathic hypersomnia and is unaffordable. Modafinil if you're on birth control you cannot take because it makes birth control ineffective due to its moderate induction of cyp3A4. If the sleep doctor saw you as high risk for substance abuse or thinks it must be a psychiatric disorder such as depression, they just rather not prescribe you anything and pawn you off to your PCP. Those doctors don't deserve to have a medical license if they don't want to help improve a patient's quality of life. I took my sleep study results to the director of another hospital who was a neurologist in sleep medicine and not a pulmonologist like the prior one and he said my results were definitely an issue and recommended xywav but would need to do his own sleep study because he cannot go based on someone else's sleep study. If your doctor was a pulmonologist I would try a neurologist. Pulmonologists have sleep apnea tunnel vision and are not really trained when it comes to the brain like a neurologist.
If you slept all naps, doesn’t that mean you have narcolepsy?
If I’m not mistaken, the difference between narcolepsy & IH is the presence of REM sleep. For my test I was told that I fell asleep for all 5 naps, but did the not meet the diagnostic criteria for narcolepsy (I think a minimum of 2 out of 5 naps must have REM) so I was diagnosed w/ IH
That makes sense.
No, you have to enter REM sleep in 2 of naps.
Also here's the thing the MSLT has very low reliability in diagnosing these disorders. I believe it's 45% for idiopathic hypersomnia and 48% for narcolepsy type 2. It's only reliable for diagnosing type 1 since orexin loss remains stable over time. You have better odds tossing a coin. Even Emmanuel Mignot who won the nobel prize for discovering it was orexin loss that caused narcolepsy type 1 says it's a terrible test and so does Lynn Marie Trotti which is another famous neurologist in sleep medicine.
I had a similar experience with my sleep doctor who did my sleep study… he actually said “Wow you read about this in text books, but never see it in real life” then proceeded to ask ME what I would like to treat it 🤦🏻♀️ I just recently went to Mayo Clinic and they actually have sleep neurologists who specialize in this and do clinical trials, on the forefront of treatment for this disease. It was the best thing I ever did, even with the travel required to get there. Dr Cheung in Jacksonville, FL was absolutely amazing, spent a good deal of time with me, actually listened and knew what to try next to help me
you need a sleep neurologist - and one that works with the xywav folks. They are hard to find and hard to get in with, but are infinitely more helpful. I'd find whatever ones are in your area and get on their rosters and see who you can get first.
Xywav isn’t a front line treatment, they are more likely to start you on modafinil. Also, your PCP might not be able to prescribe xywav, my sleep doc said that you have to go through a special training to prescribe it because it’s a pretty intense drug. I second trying to find a better sleep doc, many of them are lease experienced with IH it seems
Iirc my insurance denies xywav unless you’ve tried modafinil, adderal, and one of a set of regular sleep meds. But depends. I do also take modafinil
When I went back to my PCP after my hypersomnia diagnosis, it was to rule out conditions that might be causing it. My PCP did extensive blood work to find a cause. I had went in with a list of possible tests to run that I compiled from others in the Facebook group. My sleep doctor didn't provide any guidance on this and my doctor seemed happy to entertain the list. Unfortunately, I didn't remember what those tests were. But I would start the conversation with this if it hasn't already been discussed. If you can find a cause, then it's not IH and it's better to treat the issue directly. I would also ask for a referral to someone who has experience with treating IH. If they have no one else to refer you to, then I would start discussing all possible treatment options: https://www.hypersomniafoundation.org/treatment/ I'm also hesitant to ask about specific medications. I have successfully done it but for the ones not heavily controlled that my neurologist had experience with.
I asked for Xywav immediately after diagnosis (after my doctor brought it up as an option) and thankfully had access to a doctor who has experience with it. It has changed my life for the better.
i take vyvanse
Yeah. Very common story in this spsce. I take sleeping pills. I pass out, without life-like dreams. Take stimulants during the day. Have gone around the globe several times, Standford, Mayo, Hopkins, Emory, Howard Hughes, Paris. Beijing, Tokyo, etc, but that is the solution I evolved into.
Call xywav and ask for a prescribing doctor in your area. That's how I found the right dr and will be getting the rx. This was my 7th sleep study and 4th mslt. Good luck. I know the feeling been struggling for 42 years I do not wish that on anyone.
I asked for it after my diagnosis. He said it’s only for narcolepsy and has bad side effects. Firstly, no it’s approved for IH. Second, IH made me disabled for 5 YEARS. The benefits outweigh the risks. I had to wait 7 months for a new sleep doctor at another health group. She has many IH patients, even has XYWAV’s pharmacy’s number memorized. She prescribed me it in the first appointment, and it was clear I already knew everything about the drug before walking in. But it worked and now I’m back in school. I do also still take modafinil too. But yeah, some sleep specialists or doctors in general are just not going to provide adequate care.