#3 idiopathic hypersomnia

[SleepingBearDoNtWake]

Does anyone of you suffer from Idopathic hypersomnia? Can you tell me how you were diagnosed? I know some people take stimulants, I have not been diagnosed with this, illness, but I have been put on stimulants to try to keep me awake. They don't work for me. So I am looking for reasons why I am not functioning. When was in the hospital with depression a nurse told me about idiopathic hypersomnia. I have never heard of it. My Psych doctor told me maybe I have some kind of narcolepsy. That is why I am trying to get this sleep study to find out if something else is going wrong.
Anyways, I look up idiopathic hypersomnia and it sounds exactly like what I experience. I need to get diagnosed first. My little understanding of it, is that it is more of an illness, you are considered after ruling everything else out.
Do any of you suffer from this, and do any of you find stimulants to help or do any of you use Flumazenil. I have heard they are trying it with people with have Idiopathic Hypersomnia and the results seem to be good. I don't know if we have that med in the US for the treatment of Hypersomnia. If you have this, can I ask how were you diagnosed? What symptoms did you have, what treatments worked, what didn't.
Also, narcolepsy, I don't think I have that, as I don't fall asleep all of a sudden. It was suggested by my psych doc, that maybe I had a very mild case and that I wouldn't just fall alseep but I would be tired all the time.
Can anyone on here tell me, if you have had it, how did you know, what were your treatment options, did they help.

I am calling my doctor today to ask for a sleep study to be done at another place, as I am not getting answers to my questions, and I am getting aggravated, it's been going on so long now, and I need to find some answers, so I can function.

Thank you all for your input on my questions. I apologize if I am all over the place, that;s my dyslexia, it's hard for me to put down things in order and get it out onto paper or a computer the way it is in my head.

Blessing to you all,

Mike

[Julie]

Not answering your questions here now, but please keep all your notes in one place, under one thread so we can get a history, and respond hopefully somewhat intelligently based on the whole thing rather than run all over to look at your other notes first. Thanks!

[49er]

Hi,

You need to start with the full scale sleep study to make sure nothing else is going on such as sleep apnea. And by the way, I wish I had a nickel for all the folks diagnosed with depression who turned out to have sleep apnea. And you can be tired all the time with sleep apnea just so you know.

If you don't have sleep apnea and your doctor feels there isn't reasonable cause to test you for narcolepsy and nothing else could possibly explain your situation such as the usual blood work like (D3 and thyroid testing, etc.) than that might be a possibility.

If you do have sleep apnea, then goal would be to optimize your treatment. If your sleep doc and you felt your treatment was optimized and you were still having trouble with tiredness, then it would be usually reasonable to look into IH assuming again that everything else had been ruled out.

49er

Does anyone of you suffer from Idopathic hypersomnia? Can you tell me how you were diagnosed? I know some people take stimulants, I have not been diagnosed with this, illness, but I have been put on stimulants to try to keep me awake. They don't work for me. So I am looking for reasons why I am not functioning. When was in the hospital with depression a nurse told me about idiopathic hypersomnia. I have never heard of it. My Psych doctor told me maybe I have some kind of narcolepsy. That is why I am trying to get this sleep study to find out if something else is going wrong.
Anyways, I look up idiopathic hypersomnia and it sounds exactly like what I experience. I need to get diagnosed first. My little understanding of it, is that it is more of an illness, you are considered after ruling everything else out.
Do any of you suffer from this, and do any of you find stimulants to help or do any of you use Flumazenil. I have heard they are trying it with people with have Idiopathic Hypersomnia and the results seem to be good. I don't know if we have that med in the US for the treatment of Hypersomnia. If you have this, can I ask how were you diagnosed? What symptoms did you have, what treatments worked, what didn't.
Also, narcolepsy, I don't think I have that, as I don't fall asleep all of a sudden. It was suggested by my psych doc, that maybe I had a very mild case and that I wouldn't just fall alseep but I would be tired all the time.
Can anyone on here tell me, if you have had it, how did you know, what were your treatment options, did they help.

I am calling my doctor today to ask for a sleep study to be done at another place, as I am not getting answers to my questions, and I am getting aggravated, it's been going on so long now, and I need to find some answers, so I can function.

Thank you all for your input on my questions. I apologize if I am all over the place, that;s my dyslexia, it's hard for me to put down things in order and get it out onto paper or a computer the way it is in my head.

Blessing to you all,

Mike

[lilly747]

Not answering your questions here now, but please keep all your notes in one place, under one thread so we can get a history, and respond hopefully somewhat intelligently based on the whole thing rather than run all over to look at your other notes first. Thanks!

This is your third thread. As Julie intimated, it's confusing.....49er does not even realize you have apnea and you are using a machine. Also it would be helpful if you would list equipment. Maybe put everything under one heading: for example, I Have some problems..Help You can still ask one question at a time this way.

Sorry you are having so many problems, I am sure you will find some help here.

[SleepingBearDoNtWake]

Not answering your questions here now, but please keep all your notes in one place, under one thread so we can get a history, and respond hopefully somewhat intelligently based on the whole thing rather than run all over to look at your other notes first. Thanks!

This is your third thread. As Julie intimated, it's confusing.....49er does not even realize you have apnea and you are using a machine. Also it would be helpful if you would list equipment. Maybe put everything under one heading: for example, I Have some problems..Help You can still ask one question at a time this way.

Sorry you are having so many problems, I am sure you will find some help here.

Sorry about that. I had so much going on, that I thought, separating them would be helpful, as I thought, it would be a long and confusing post. Looks like I did that anyways. Once again I apologize, and thank everyone for there feedback, you all are so very helpful, when a need arises.

[Julie]

Anytime...

[robysue]

SleepyingBeaerDoNtWake,

I'm actually someone who prefers that distinctly different problems be put in different threads. So there's no pleasing all of us here at cpaptalk.

It does help, however, to have your equipment in the "signature" area to remind folks that you are already using CPAP.

You write:

When was in the hospital with depression a nurse told me about idiopathic hypersomnia. I have never heard of it.

"Idiopathic" in a medical sense means the cause of a medical symptom or condition (like hypersomnia) is unknown or cannot be determined. In other words, idiopathic hypersomnia means that you are sleepy all the time, but the usual causes of excess daytime sleepiness don't seem to be responsible for causing the sleepiness. It's what they diagnosis you with when all the usual suspects have been ruled out.

In your case: Untreated OSA would not be assumed to be causing your OSA if you are using your CPAP as directed (i.e. every night, all night long AND for all intentional daytime naps) AND if it can be demonstrated that the CPAP is effective at managing your apnea. Does your machine record full efficacy data? If so, what's the AHI usually run.

Other causes of hypersomnia that might need to be ruled out before labeling your problem as idiopathic hypersomnia would include things like plain old insomnia (i.e. do you have problems getting to sleep or staying asleep at night?), other night time sleep problems (PLMD for example), and other medical problems such as thyroid problems or depression that can have hypersomnia a major symptom. Narcolepsy obviously should also be ruled out even if you don't think you have the best known symptom of suddenly falling asleep during the daytime.

My Psych doctor told me maybe I have some kind of narcolepsy. That is why I am trying to get this sleep study to find out if something else is going wrong.

Certainly another sleep test might be reasonable. It sounds like you ought to have a sleep test where they have you sleeping with a CPAP at pretty much your prescribed settings to see if there's something else fishy going on at night. For diagnosing narcolepsy, you'd need to also be scheduled for an MSLT test that follows the night time PSG. (Note: they won't continue to the MSLT if there is something wrong found by the PSG. That's why you need to have the PSG while sleeping with a CPAP.)

Are you on medication for depression or any other chronic medical conditions? If so, you might also want to talk about whether any of the prescribed medications might have side effects that are contributing to your hypersomnia.

Do any of you suffer from this, and do any of you find stimulants to help or do any of you use Flumazenil. I have heard they are trying it with people with have Idiopathic Hypersomnia and the results seem to be good. I don't know if we have that med in the US for the treatment of Hypersomnia.

A quick google search shows that the FDA approved Flumazenil back in 1991. You can find out a lot more about this drug and its uses by going to http://www.drugs.com/cdi/flumazenil.html