New (fatigued!) user looking for ideas :-)

MasterMark · Post by **MasterMark** » Thu Apr 21, 2016 5:04 am

Greetings to all!

I apologise in advance for the length of this post, but figured I’d put as much info as possible – seems this site has a wealth of knowledge, so thought I’d give it a go!

Background: for years I’d felt a little tired/fatigued in the morning, not feeling massively well-rested. Anyone sleeping in the same room as me had always noted some “strange noises” I’d make, seemingly holding my breath with a low murmuring, and then following with a heavy exhale. I was completely unable to sleep at my first sleep study in 2010, but the consultant was pretty sure I had Catathrenia, not sleep apnoea. In any event, while not ideal, the situation was perfectly manageable, and I didn’t investigate further.

Fast forward 5 years, to February last year. With no changes in anything (life/home/work etc), I suddenly started waking up absolutely exhausted, every morning. Fatigue throughout my body, not at all well-rested. It gets better as I get out and about, and I can function normally during the day. But I remain a little fatigued, and by the evening, I’m pretty wiped. So it’s definitely impacting on my life, I’m kind of always clock-watching because I know the later I go to bed, the more tired I’ll be! And as I’m sure most people here can appreciate, waking up exhausted every single morning is, well, exhausting. And this is being a single man with no kids!

I’ve had a further 2 sleep studies. I obviously can’t hack the pressure (!) as I’ve barely slept in either. But they did seem to confirm a diagnosis of Catathrenia, not apnoea. They still suggested a CPAP trial, just to see whether that would have any benefit. The first time (using Philips Respironics) at a cmh20 setting between 6.5 and 7.5 resulted in an AHI of around 5. So it was already low. They suggested an increase to 10, just to see what would happen, and I now have an AHI of around 2, suggesting no real issue. (I don’t have the machine to hand, but will download and post graphs/info when I get the chance. Although not sure which program I need to download to read the memory card?!) But there’s no improvement in my fatigue and still waking up absolutely wiped. Tired/stinging eyes, and general muscle fatigue, as if I’ve just played a 4hr tennis marathon! I’ve read a few people saying it can take quite a while to feel less tired, although my consultant suggested otherwise, and that if it were working, it should have a pretty quick positive impact. I've probably used the machine for 3 months (though not straight).

General info: I’m sleeping a good 8 hours a night. I wake up maybe once or twice during the night, but fall back asleep pretty quickly. I’ve done every blood test under the sun, nothing’s come up. Even tried gluten-free diet (tough for a pasta-loving Italian!). I was mildly low on Vitamin D (but only just under the normal range) and have been taking supplements, so that’s obviously not it. I’m trying to increase the amount of exercise I’m doing. I’m 34, slim, have a generally healthy lifestyle, and am thoroughly out of ideas (as are the various consultants I’m seeing!). So if anyone has any ideas/has experienced anything remotely similar, I’d love to hear from you!

Marco

LSAT · Post by **LSAT** » Thu Apr 21, 2016 5:23 am

Have you had your Thyroid checked?

MasterMark · Post by **MasterMark** » Thu Apr 21, 2016 5:28 am

Hi LSAT,

yes indeed, Thyroid was done as part of the myriad blood tests!

grayghost4 · Post by **grayghost4** » Thu Apr 21, 2016 6:27 am

Every one will think this is "Snake Oil" .... but judge for yourself. might be worth a try ... seems to be helping me. Only been one month, so early to tell for sure.

https://www.youtube.com/watch?v=uj8FTWCb010

KayakKid · Post by **KayakKid** » Thu Apr 21, 2016 8:41 am

grayghost4 wrote:Every one will think this is "Snake Oil" .... but judge for yourself. might be worth a try ... seems to be helping me. Only been one month, so early to tell for sure.

https://www.youtube.com/watch?v=uj8FTWCb010

grayghost4 ,

Can you summarize what this is in a few sentences? I intend to watch it, but don't have an hour+ to do so right now.

Julie · Post by **Julie** » Thu Apr 21, 2016 9:10 am

Vit. D is good for you - according to the video. There's a lot of controversy about it though, how much, for whom, etc. etc.

MasterMark · Post by **MasterMark** » Thu Apr 21, 2016 9:25 am

Interesting! The research I’d done (not masses, tbh) suggested that once you were comfortably within the “recommended” range (as per blood tests), there was no linkage between taking additional Vit D and improvements in fatigue (or health generically).

kteague · Post by **kteague** » Thu Apr 21, 2016 9:42 am

MasterMark wrote:I’ve had a further 2 sleep studies. I obviously can’t hack the pressure (!) as I’ve barely slept in either. But they did seem to confirm a diagnosis of Catathrenia, not apnoea. They still suggested a CPAP trial, just to see whether that would have any benefit. The first time (using Philips Respironics) at a cmh20 setting between 6.5 and 7.5 resulted in an AHI of around 5. So it was already low. They suggested an increase to 10, just to see what would happen, and I now have an AHI of around 2, suggesting no real issue. (I don’t have the machine to hand, but will download and post graphs/info when I get the chance. Although not sure which program I need to download to read the memory card?!) But there’s no improvement in my fatigue and still waking up absolutely wiped. Tired/stinging eyes, and general muscle fatigue, as if I’ve just played a 4hr tennis marathon! I’ve read a few people saying it can take quite a while to feel less tired, although my consultant suggested otherwise, and that if it were working, it should have a pretty quick positive impact. I've probably used the machine for 3 months (though not straight).

I'm a bit confused by this paragraph. Can you post the actual results from your sleep studies?

MasterMark · Post by **MasterMark** » Thu Apr 21, 2016 10:13 am

I'm a bit confused by this paragraph. Can you post the actual results from your sleep studies?[/quote]

Hi kteague,

so, summary below. I can also guarantee that I did NOT sleep for 7hrs and 46 minutes! Probably no more than 3 hours, as an estimate, so I'm not convinced of the reliability of the results.....

Lights out occurred at 22.31; sleep latency was early at 6 minutes with a normal REM onset of 95.5 minutes. The sleep efficiency was recorded as 91.5% with a total sleep time of 466.0 (7 hours 46 minutes) – WASO 32.0minutes (6.4% SPT).

Stage 1: 5.4% TST
Stage 2: 45.7% TST
Stage 3: 30.3% TST ↑
Stage R: 18.7% TST

4 REM cycles were seen. The overall arousal index was scored as 19.4/hour with 16.0/hour being of a spontaneous nature with 3.2/hour due to respiratory events and 0.3/hour due to limb movements.

The overall AHI was recorded as 6.2/hour with and ODI of 0.1/hour - events predominated REM with a REM AHI of 20.0/hour and a NREM AHI of 2.7/hour.

Baseline saturations were 98% with a nadir of 95%.

During the study breathing patterns consistent with Catathrenia were noted on two separate occasions in REM sleep (see screen shots) – repeated central apnoea’s followed by sudden exhalation at the termination of the event. Audible respiratory sounds were heard – at times this sounded typical with a high pitched groan.

No significant limb movements were noted.

I was going to add the tables and graphics, but can't seem to paste screenshots here for some reason.....

Julie · Post by **Julie** » Thu Apr 21, 2016 12:46 pm

You really don't seem to have apnea... but I would suggest that if you're a back sleeper, try to side sleep instead as apneas are provoked by back sleeping, as are snores, hypopneas (mini apneas) etc.

lilly747 · Post by **lilly747** » Thu Apr 21, 2016 1:01 pm

MasterMark wrote:Interesting! The research I’d done (not masses, tbh) suggested that once you were comfortably within the “recommended” range (as per blood tests), there was no linkage between taking additional Vit D and improvements in fatigue (or health generically).

Vit D was only a part of the story...she even said vit D alone did not work. And she was talking about much more than Apnea events. She was really talking more about SLEEP quality.

SleepyEyes21 · Post by **SleepyEyes21** » Thu Apr 21, 2016 6:12 pm

MasterMark wrote:Greetings to all!

I apologise in advance for the length of this post, but figured I’d put as much info as possible – seems this site has a wealth of knowledge, so thought I’d give it a go!

Background: for years I’d felt a little tired/fatigued in the morning, not feeling massively well-rested. Anyone sleeping in the same room as me had always noted some “strange noises” I’d make, seemingly holding my breath with a low murmuring, and then following with a heavy exhale. I was completely unable to sleep at my first sleep study in 2010, but the consultant was pretty sure I had Catathrenia, not sleep apnoea. In any event, while not ideal, the situation was perfectly manageable, and I didn’t investigate further.

Fast forward 5 years, to February last year. With no changes in anything (life/home/work etc), I suddenly started waking up absolutely exhausted, every morning. Fatigue throughout my body, not at all well-rested. It gets better as I get out and about, and I can function normally during the day. But I remain a little fatigued, and by the evening, I’m pretty wiped. So it’s definitely impacting on my life, I’m kind of always clock-watching because I know the later I go to bed, the more tired I’ll be! And as I’m sure most people here can appreciate, waking up exhausted every single morning is, well, exhausting. And this is being a single man with no kids!

I’ve had a further 2 sleep studies. I obviously can’t hack the pressure (!) as I’ve barely slept in either. But they did seem to confirm a diagnosis of Catathrenia, not apnoea. They still suggested a CPAP trial, just to see whether that would have any benefit. The first time (using Philips Respironics) at a cmh20 setting between 6.5 and 7.5 resulted in an AHI of around 5. So it was already low. They suggested an increase to 10, just to see what would happen, and I now have an AHI of around 2, suggesting no real issue. (I don’t have the machine to hand, but will download and post graphs/info when I get the chance. Although not sure which program I need to download to read the memory card?!) But there’s no improvement in my fatigue and still waking up absolutely wiped. Tired/stinging eyes, and general muscle fatigue, as if I’ve just played a 4hr tennis marathon! I’ve read a few people saying it can take quite a while to feel less tired, although my consultant suggested otherwise, and that if it were working, it should have a pretty quick positive impact. I've probably used the machine for 3 months (though not straight).

General info: I’m sleeping a good 8 hours a night. I wake up maybe once or twice during the night, but fall back asleep pretty quickly. I’ve done every blood test under the sun, nothing’s come up. Even tried gluten-free diet (tough for a pasta-loving Italian!). I was mildly low on Vitamin D (but only just under the normal range) and have been taking supplements, so that’s obviously not it. I’m trying to increase the amount of exercise I’m doing. I’m 34, slim, have a generally healthy lifestyle, and am thoroughly out of ideas (as are the various consultants I’m seeing!). So if anyone has any ideas/has experienced anything remotely similar, I’d love to hear from you!

Marco

Hi Marco,

I see that you mentioned you are seeing various consultants, so hopefully one of them is (or has) given you a complete physical exam. Some of the illnesses that came to my mind (other than apnea) that can cause your described symptoms are Lyme disease, mononucleosis, and cardiac issues.. you may have already discussed some of these with your medical professionals. If not, you can always ask.

What mask are you using with your cpap therapy and do you feel like it fits well, with no leaks/ air escaping? Sometimes, air can be escaping and we don't realize it, which can add to fatigue also. Air leaks from your mask should show in your data. If you can, please fill in the machine and mask you are using on your profile. This will help members to help you tweak/ make adjustments that may help you. I believe you have to go through imgr to post pictures here; Wulfman or RobySue may know the steps you need to take to do that

Have you asked your doctors/ consultants if it's possible that you have both sleep apnea and catathrenia? Prior to your post, I had never heard of catathrenia so I researched it a bit. I found 4 articles that said 'it doesn't cause any damage to the person who has it, it's not sleep apnea, it does not cause daily fatigue like OSA, but it can be treated successfully with cpap.' I found one article that said 'it can't be treated with cpap.' Confusing- yet even if you go with the majority- (other than for a SO's relief), why do you have to treat something that's not causing damage? Can you share with me your understanding of what catathrenia is and what the symptoms are? I'm just curious

Have you thought about trying a bi-pap machine? There's also an ASV machine, I think? Not quite sure what that one does, but one of the Longtimers can tell you. Another question: do you know if you are still making "strange noises" or are holding your breath while you sleep? You can set up a video camera if need be, to see what's happening while you sleep.

I would suggest your sleep consultant is wrong in telling you "...if it were working, it should have a pretty quick positive impact." That is not true for everyone, especially if you are not using your treatment every night. To try to get to the best possible outcome for you eventually, you have to use the treatment as prescribed (which is everytime you go to sleep.) Cpap treatment is a process for the majority who are prescribed it.

Kaibyrd · Post by **Kaibyrd** » Thu Apr 21, 2016 10:36 pm

I wake up feeling just as you described every morning and need more sleep than most people. I have trouble either getting to sleep or staying asleep so getting that sleep is problematic. I gain some energy as the (late) morning progresses but I've only got about 50% of the energy level I once had and on bad days it's much worse. I also have a lot of other symptoms but the fatigue and brain fog are the constant ones. I had to search for doctors who would actually do their jobs and try to discover what the cause of my fatigue was since most just wanted to call me depressed and send me home with more pills. I was finally diagnosed with Lyme's disease. The test aren't really all that great at detecting the disease so you may need to find a Lyme literate doctor in order to truly know if this is your issue or not. The folks at http://flash.lymenet.org/scripts/ultimatebb.cgi can help you find a doc in your area if you're interested.

RogerSC · Post by **RogerSC** » Fri Apr 22, 2016 2:55 am

grayghost4 wrote:Every one will think this is "Snake Oil" .... but judge for yourself. might be worth a try ... seems to be helping me. Only been one month, so early to tell for sure.

https://www.youtube.com/watch?v=uj8FTWCb010

Just curious how you figured out how much of the various supplements that you needed to take? And were the changes that you've seen that you would attribute to the supplements?

Interesting, just wondering how you applied this to yourself, and what you feel that it did for you?

Thanks!

MasterMark · Post by **MasterMark** » Fri Apr 22, 2016 3:02 am

Thanks to all for your interest and help, massively appreciated. I’ll try and take the comments in turn…!

Julie – I actually sleep on my front, totally unable to sleep any other way!

Kaibyrd – Glad to hear you’ve got to the bottom of it! I was actually tested for Lyme disease, came back negative. Interesting you say that the blood tests aren’t 100% effective, will look into it. Didn’t have any of the other symptoms associated with Lyme disease though (no rashes, joint pain etc), but probably worth another look given I’m currently stuck for diagnosis!

SleepyEyes – Thanks for the detail! Seems that Mono has been ruled out. I recently went to see an experienced ME/Chronic Fatigue Syndrome specialist here in London. Obviously fascinated by my rare issue, but said I just didn’t fit the bill for ME as other than fatigue, I don’t have any of the other symptoms associated with it. He has referred me to his colleague (more on the physician side of things), so we’ll see where that goes. And yes, I’ve had pretty thorough physical exams, and a whole range of blood tests (liver, kidney, thyroid etc etc). All negative.

Mask – I don’t have the details with me, but it’s one that fits just under the nostrils, not the mouth/face. Fits well, I sleep ok with it, and the machine (Philips Respironics) doesn’t show any leaks occurring. I’ll keep using the machine, though I’ve again used it the last 5 weeks or so with no impact.

Catathrenia – very little research on it as it’s quite newly identified. But it’s effectively a holding of breath, accompanied with a low murmuring/groaning sound (it’s also called “sleep-groaning”) and a heavy exhalation at the end. Symptoms – in theory, nothing. The research that’s been done suggests there are no negative health/sleep issues with it, and that more than anything it’s just disruptive for your partner if it bothers them.

New (fatigued!) user looking for ideas :-)

New (fatigued!) user looking for ideas :-)

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Re: New (fatigued!) user looking for ideas :-)

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Re: New (fatigued!) user looking for ideas :-)

Re: New (fatigued!) user looking for ideas :-)

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Re: New (fatigued!) user looking for ideas :-)

Re: New (fatigued!) user looking for ideas :-)

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