Thanks for this interview with Dr. Mignot! It makes me feel like I may - someday - be able to experience a day when I am not tired. My original sleep disorder diagnosis (in 1997) was Idiopathic Hypersomnia, or borderline Narcolepsy as the doctor described it. I did not have Sleep Apnea at that time, however, I developed it some years afterward. My IH diagnosis has essentially been forgotten in favor of treating Sleep Apnea. I use my CPAP faithfully, but still require Modafanil to keep my mind in a high-functioning state throughout the day. Thanks for giving me hope, Hypersomnia Foundation!
I am dx with idiopathic hypersomnia. Can you explain how neurotransmitters come into play with this also? I wake every morning with brain fog, inertia and also mood is VERY low every morning. Also cloudy weather makes my inertia and brain fog severely worse. Cognitive issues etc. I have a pretty severe case. I pray that there is relief in my future
All what he said is true, sometimes is not just falling asleep issue, is like a permanent "jetlag"and thr currently tests makes you feel more misunderstood. Thanks for your efforts in IH research.
It really sucks, I’ve had it’s since 2015. It gradually got worse and was diagnosed in 2017. I have to set a alarm clock far from me. I have to quickly take Adderall and then Nuvidgil. If I don’t take the Adderall I’m falling back to sleep. Even if I take the meds, if I’m idle I’ll fall to sleep. I must keep moving the whole time.
I was diagnosed with IH at age 44 last year after a full lifetime of non restorative sleep and no idea why. It took several types of doctors and sleep labs only wanted to address sleep apnea. I use a CPAP which shows great success on paper but did nothing to help me feel rested. I went to bed worried that I would oversleep because I can sleep through multiple alarms. I tried medicines to "promote wakefulness" which made me not want to nap for the first half of the day but didn't solve not feeling rested whether I slept 7 hours or 18. I did the MSLT and was told I technically didn't meet the criteria for IH because it took me too long to fall asleep during controlled naps but I could try XYWAV since my symptoms were so aligned. Then my insurance wouldn't cover it due to the MSLT readings. Thankfully I qualified for a subsidy and my life soon would change. After reaching full dosage I wake up on time and actually feel rested. I don't feel like falling asleep all day and can actually function with better mental clarify. I always said the thing I wanted most in the world was to feel rested and wake up easily. I had never heard of IH and I'm so thankful to have found what I searched for my whole life.
I was diagnosed with IH/borderline narcolepsy when I was 23. My PCP initially thought I had something autoimmune but decided I should have a sleep study done just to check all the boxes. My symptoms are alll over the place. I definitely find that i “jump around the spectrum” depending on other factors (hormones and menstrual cycle, other life stressors). I’m an ICU nurse so having enough energy for work is CRUCIAL. I’ve been able to make my sleep and work schedule “work” for the most part but I still deal with incredible amounts of sleep inertia on my days off. This was a very informative interview! It’s so nice to know I’m not crazy and dealing with this all by myself. Thank you guys! ❤
I have a question. Where can I find answers to lifestyle questions for people with an IH Dx? Maybe things like info posters and the like. I ask because, it seems like if someone is living with IH, there cognitive ability to make safe decisions may be effected negatively, and such guidance could be helpful.
Hi there! We would recommend going to our website -- HypersomniaFoundation.org. There are resources there to support people with IH and their quality of life.
Mine, is a question. I have problems with sleep, I have trouble staying awake. I have mentioned this often to various GPs, but the subject is merely brushed aside. How do I get to have this taken seriously, in other words, a diagnosis?
I have IH (with hypnogogic hallucinations) I was so surprised that the readings were turned off between naps! I wanted to know what my brain was doing when I was trying to stay awake. Knowing I feel asleep quickly was not surprising to me, finding out after 48 yrs there was an actual diagnosis was mind blowing.
Thanks for this interview with Dr. Mignot! It makes me feel like I may - someday - be able to experience a day when I am not tired. My original sleep disorder diagnosis (in 1997) was Idiopathic Hypersomnia, or borderline Narcolepsy as the doctor described it. I did not have Sleep Apnea at that time, however, I developed it some years afterward. My IH diagnosis has essentially been forgotten in favor of treating Sleep Apnea. I use my CPAP faithfully, but still require Modafanil to keep my mind in a high-functioning state throughout the day. Thanks for giving me hope, Hypersomnia Foundation!
I am dx with idiopathic hypersomnia. Can you explain how neurotransmitters come into play with this also? I wake every morning with brain fog, inertia and also mood is VERY low every morning. Also cloudy weather makes my inertia and brain fog severely worse. Cognitive issues etc. I have a pretty severe case. I pray that there is relief in my future
All what he said is true, sometimes is not just falling asleep issue, is like a permanent "jetlag"and thr currently tests makes you feel more misunderstood. Thanks for your efforts in IH research.
How ironic, I fell asleep watching this video, while satisfying my curiosity about the sleep problem I have.
It really sucks, I’ve had it’s since 2015. It gradually got worse and was diagnosed in 2017. I have to set a alarm clock far from me. I have to quickly take Adderall and then Nuvidgil. If I don’t take the Adderall I’m falling back to sleep. Even if I take the meds, if I’m idle I’ll fall to sleep. I must keep moving the whole time.
hey. sorry for that
hows things going for you now? any changes? did u improved and how?
Im almost angry that ive not heard of this before- despite years and 10’sb of thousands of spent with
I was diagnosed with IH at age 44 last year after a full lifetime of non restorative sleep and no idea why. It took several types of doctors and sleep labs only wanted to address sleep apnea. I use a CPAP which shows great success on paper but did nothing to help me feel rested. I went to bed worried that I would oversleep because I can sleep through multiple alarms. I tried medicines to "promote wakefulness" which made me not want to nap for the first half of the day but didn't solve not feeling rested whether I slept 7 hours or 18. I did the MSLT and was told I technically didn't meet the criteria for IH because it took me too long to fall asleep during controlled naps but I could try XYWAV since my symptoms were so aligned. Then my insurance wouldn't cover it due to the MSLT readings. Thankfully I qualified for a subsidy and my life soon would change. After reaching full dosage I wake up on time and actually feel rested. I don't feel like falling asleep all day and can actually function with better mental clarify. I always said the thing I wanted most in the world was to feel rested and wake up easily. I had never heard of IH and I'm so thankful to have found what I searched for my whole life.
Good day, is there any way to get in touch with Dr. Mignot? Note that I am from Canada.. Thank you!
I was diagnosed with IH/borderline narcolepsy when I was 23. My PCP initially thought I had something autoimmune but decided I should have a sleep study done just to check all the boxes.
My symptoms are alll over the place. I definitely find that i “jump around the spectrum” depending on other factors (hormones and menstrual cycle, other life stressors). I’m an ICU nurse so having enough energy for work is CRUCIAL. I’ve been able to make my sleep and work schedule “work” for the most part but I still deal with incredible amounts of sleep inertia on my days off. This was a very informative interview! It’s so nice to know I’m not crazy and dealing with this all by myself. Thank you guys! ❤
I have a question. Where can I find answers to lifestyle questions for people with an IH Dx? Maybe things like info posters and the like. I ask because, it seems like if someone is living with IH, there cognitive ability to make safe decisions may be effected negatively, and such guidance could be helpful.
Hi there! We would recommend going to our website -- HypersomniaFoundation.org. There are resources there to support people with IH and their quality of life.
The problem with the HST is that brain waves are not studied in the Wake stages.
Yea I definitely have this.
Go to bed at 10 pm, get up at 9 am (on average). Is it normal?
Mine, is a question. I have problems with sleep, I have trouble staying awake. I have mentioned this often to various GPs, but the subject is merely brushed aside. How do I get to have this taken seriously, in other words, a diagnosis?
Ask GP to order a sleep study and multiple sleep latency test (MSLT).
I have IH (with hypnogogic hallucinations)
I was so surprised that the readings were turned off between naps! I wanted to know what my brain was doing when I was trying to stay awake. Knowing I feel asleep quickly was not surprising to me, finding out after 48 yrs there was an actual diagnosis was mind blowing.
we need geniuses like this thanks so much sir