Tired to the bone and at my wits end. Just did sleep study.

[Flex Plexico]

Hi, I asked about a neurologist because while a scan can look normal, it doesn't necessarily mean everything neurological is normal and/or that other issues aren't possible, plus many neuros are trained in sleep medicine - not all, however - and will ask meaningful questions (that you or your other docs can't anticipate now). Apnea can be a very neurologically oriented problem and I would ask for a referral to a neuro specializing in sleep problems as many may not be obvious to e.g. GPs. I also wonder if you've been tested for e.g. Lyme disease which can look a lot like e.g. apnea (and other things too) in certain respects, but are not apnea and need different fixes. You shouldn't have to work so hard to find answers in your condition though... too bad!

Thanks Julie, I will ask about a sleep specialized neurologist on my next visit and see what we can cook up. I haven't been tested for Lyme, but I think they are waiting to rule out a bunch of stuff before going there. My GP unfortunately is extremely hands off and conservative, and hasn't been able to offer any insights aside from a few blood tests. Beggars can't be choosers I guess.

Ask your GP for a sleep study because you think you may have apnea. Waking up gasping is a sure sign you need to be tested. Talking to my GP was how I got my sleep study referral, covered by insurance.

I actually did a sleep study last Friday, and will be getting the results in on the 30th. Yes luckily my insurance covered it, and my insurance will cover 100% of a CPAP device too if needed.

Brain fog comes with sleep apena as well. Hoping for your sake its not any of the autoimmune issues as they are hard to track down.

Me too, fingers crossed. I wouldn't say I have brain fog - I have a sensation of heaviness on my head and behind my eyes, but my thinking and cognition are clear as a bell, and thinking does not increase the symptoms. One of my hobbies is electronics programming and working with arduino, which takes a lot of thinking and coding, and I've had no trouble doing any of that. Its more physical tasks that are brutal. I feel like if they just put me to sleep with drugs for 24 hours I would feel ten times better. I've always had trouble getting consistent good sleep in my life, I am a super light sleeper and very very susceptible to things like light or sound.

[nicholasjh1]

I lost interest in life, loss of sex drive, and generally just wanted to lie in bed all day. I could get around and do things and even had a certain amount of endurance. Your extreme weakness suggests some sort of decomp, or decompensation... meaning if it is sleep apnea you probably had it for quite a while.. and it's possible something gave out. for instance I had low adrenaline for years but my body compensated by overproducing nor-adrenaline (or nor-epinephrine here in the states), decomp would have been my nor-epineprine systems also giving out. it took several months of cpap therapy (probably 3-5) for me to regain normal adrenal function. hopefully you will recover too. I'd definitely think it's related to apnea but my point is it may have caused enough damage (from sleep loss and from apoxia from the not-breathing part) that it will take a while to recover....

Good luck.

Edit: Also it's worth noting that I have a cerebral job (software testing) and I could still do well at it, though over the years my speed did deteriorate, I always blamed it on getting older, and even though I didn't think I was becoming "stupider" it's obvious to me now that I was working at a deficit. In fact after therapy I feel smarter and sharper then I EVER have.

[D.H.]

Definitely, you need a sleep test. I suggest that you get the test for Narcolepsy as well, given that you report a sudden "collapse" due to exhaustion.

Back in 1999, the narcolepsy test was given back-to-back with the overnight sleep test. That meant spending approximately 22 hours in the sleep lab. I'm not sure if there's a newer way to test for it.

[Muse-Inc]

Sounds like some of my symptoms before my sleep study; I thought I was dying. My bloodwork was a complete mess, 'chemical stew' is my sleep doc called it. They put me on a diuretic which caused horrible muscle tiredness & I could not walk for more than a few minutes and had to hold my head up when I sat down to eat. Reading suggested the diuretic was washing out minerals, so I started drinking V8 and within a week most of my muscle 'tiredness' disappeared. Months later, I dropped it and the muscle tiredness came back. It was time for bloodwork and my potassium was right on the edge of normal. I have decided I am sensitive to potassium levels and make sure I drink V8 several times a week if not daily.

[purple22]

muse-inc Also sounds like borderline MS/MD. Keep up your potassium levels.

[Flex Plexico]

I lost interest in life, loss of sex drive, and generally just wanted to lie in bed all day. I could get around and do things and even had a certain amount of endurance. Your extreme weakness suggests some sort of decomp, or decompensation... meaning if it is sleep apnea you probably had it for quite a while.. and it's possible something gave out. for instance I had low adrenaline for years but my body compensated by overproducing nor-adrenaline (or nor-epinephrine here in the states), decomp would have been my nor-epineprine systems also giving out. it took several months of cpap therapy (probably 3-5) for me to regain normal adrenal function. hopefully you will recover too. I'd definitely think it's related to apnea but my point is it may have caused enough damage (from sleep loss and from apoxia from the not-breathing part) that it will take a while to recover....

Wow, that is an incredible story, and basically what I am experiencing as well. Sex drive has been totally dead for months, and like you before I crashed I had a certain amount of endurance... but never seemed to make gains at the gym, or get stronger from doing things like lifting heavy objects or go bike riding etc. I wouldn't be surprised if i've unknowingly had the apnea for a while. I think I have a long road to recovery yes. My endo never got back to me yesterday so I'm not sure about the state of my adrenals, but hopefully I can talk to him Monday.

Sounds like some of my symptoms before my sleep study; I thought I was dying. My bloodwork was a complete mess, 'chemical stew' is my sleep doc called it. They put me on a diuretic which caused horrible muscle tiredness & I could not walk for more than a few minutes and had to hold my head up when I sat down to eat. Reading suggested the diuretic was washing out minerals, so I started drinking V8 and within a week most of my muscle 'tiredness' disappeared. Months later, I dropped it and the muscle tiredness came back. It was time for bloodwork and my potassium was right on the edge of normal. I have decided I am sensitive to potassium levels and make sure I drink V8 several times a week if not daily.

Yes I feel like i'm dying, except my bloodwork has been mostly normal so far. Diuretics can be brutal, funny enough I was actually low on potassium during my visit with the endo. He told me to eat some bananas. I'll try some V8 for the hell of it, it can't hurt anything.

muse-inc Also sounds like borderline MS/MD. Keep up your potassium levels.

Will do, I'll keep up my potassium.

[Flex Plexico]

Just for fun I put on the pillow app last night.... I had all the classic symptoms i've been experiencing so far. Woke up after two hours and my heart was pounding like I had just had a nightmare. Waking up feeling out of breath just as i'm dozing off probably a dozen times. Woke up basically every 2-3 hours in the night. Tons of audio recordings of me either mouth breathing heavily like i'm catching my breath, or outright snoring. Lots of tossing and turning (all those light sleep green bars are tossing and turning and I can confirm in the audio recordings). Just a mess.

[Flex Plexico]

Does anyone have any feedback on this combo if I decide to pull the trigger? I am not sure if I can wait until the 30th and then however long it may take to get a machine, if the sleep study recommends it.

https://www.amazon.ca/gp/product/B071ZN ... 9EBBUDARFI - Dream Station DSX500T11
https://www.amazon.ca/gp/product/B015KF ... 9EBBUDARFI - Respironics Nasal Mask

And I would probably go for the heated hose as well which I could pick up locally.

[Pugsy]

Decent choices on the mask and machine but given there is so much we don't know ....if it were me I would rather have the ResMed AirSense 10 AutoSet or the older big brother the S9 AutoSet if at all possible.

Where are you located?

If in the US...contact this forum member
memberlist.php?mode=viewprofile&u=35445
He dabbles in some used machines and is trustworthy. I don't know what (if anything) he might have right now but he usually has ResMed machines.

[Flex Plexico]

Decent choices on the mask and machine but given there is so much we don't know ....if it were me I would rather have the ResMed AirSense 10 AutoSet or the older big brother the S9 AutoSet if at all possible.

Where are you located?

If in the US...contact this forum member
memberlist.php?mode=viewprofile&u=35445
He dabbles in some used machines and is trustworthy. I don't know what (if anything) he might have right now but he usually has ResMed machines.

I'm located in Canada, unfortunately my options are pretty limited and I can't really spend more than 1000 dollars out of my own pocket as with no prescription this would not be covered by insurance. I just don't know if I can wait until the 30th, get my results, perhaps set another sleep study date for titration, probably a month later, meanwhile I'm living in hell. You mean you don't know about my condition, or you don't know about the Dreamstation? Is it a relatively new product? It seems fully featured and from what I understand I will be able to import all the data into sleepyhead.

Thanks for your feedback!

[Pugsy]

The DreamStation is a great machine...

What we don't know if
1...confirmation that you for sure have OSA....that's a big one
2...what your pressure needs might be if you do have OSA
3...if your pressure needs are higher...the exhale relief that the ResMed machines offer is superior IMHO...so more comfortable especially at higher pressures
4...different algorithms between the 2 brands....based on my personal experience with both ResMed and Respironics...I prefer the ResMed
5...the ResMed is more likely to be less noisy and less likely to have annoying breathing noises (which I know you don't know what I am talking about) than the Respironics

If you were a family member of mine...I would advise the ResMed AutoSet...either S9 or AIrSense 10

Since you are in Canada you can order from secondwindcpap.com without a lot of RX hassle and save some money. They are good people.
https://www.secondwindcpap.com/Used_CPAP.html
Scroll way down to the bottom to see the ResMed machines offered.
They have a AirSense 10 AutoSet for $489
Or if you can stand the ugly pink...a S9 AutoSet for Her for $379.
They even have some new open box specials if used freaks you out.

[Pugsy]

Oh...one last plus for the ResMed....it's an easier resale to recoup expenses if for some reason you don't have OSA or you do but end up needing a different machine for some reason or other.

[Arlene1963]

I'm located in Canada, unfortunately my options are pretty limited and I can't really spend more than 1000 dollars out of my own pocket as with no prescription this would not be covered by insurance. I just don't know if I can wait until the 30th, get my results, perhaps set another sleep study date for titration, probably a month later, meanwhile I'm living in hell.

Your decision will be influenced a lot by which province you're located in, and also what your insurance covers. Different provinces have different programs covering XPAP... Ontario has a very generous program for example. If your provincial health program doesn't cover it, then a private health plan might if you have a prescription.

Your appt. is in a mere two weeks. I know that seems forever but if you report to the sleep specialist how wretched you feel and if your sleep study indicates this, you will be given a prescription for a trial period with XPAP that very day when you see the sleep doc, and you can go and get your XPAP straight away.

Honestly, I'd be inclined to wait because if you buy online, for example, chances are you won't be ahead of the game waiting for the delivery, possibly by a few days only if that. Getting a prescription from the sleep doc means your private insurance or provincial health program if eligible will cover a lot of the cost.

Easier said than done, I know, to be patient. FWIW I bought my own machine from Secondwind while waiting for my appt. with the sleep doc back in 2015. I had to wait for 4 months to see the sleep specialist after my initial sleep study and that was way too long. (My diagnosis is moderate OSA, AHI 16)

[Flex Plexico]

Your decision will be influenced a lot by which province you're located in, and also what your insurance covers. Different provinces have different programs covering XPAP... Ontario has a very generous program for example. If your provincial health program doesn't cover it, then a private health plan might if you have a prescription.

Your appt. is in a mere two weeks. I know that seems forever but if you report to the sleep specialist how wretched you feel and if your sleep study indicates this, you will be given a prescription for a trial period with XPAP that very day when you see the sleep doc, and you can go and get your XPAP straight away.

Honestly, I'd be inclined to wait because if you buy online, for example, chances are you won't be ahead of the game waiting for the delivery, possibly by a few days only if that. Getting a prescription from the sleep doc means your private insurance or provincial health program if eligible will cover a lot of the cost.

Easier said than done, I know, to be patient. FWIW I bought my own machine from Secondwind while waiting for my appt. with the sleep doc back in 2015. I had to wait for 4 months to see the sleep specialist after my initial sleep study and that was way too long. (My diagnosis is moderate OSA, AHI 16)

Hello fellow Ontarian. Thank you for this advise on how the system works - I didn't know that Ontario even had an XPAP program. I have insurance with SunLife and they will cover 100% of required equipment, masks and hoses according to them. I will try and make it the next two weeks I know that I did get a good deal with that booking, and the technician said they would send the results to my doctor a couple weeks after the study (so its possible I could get a script sooner). I'll call my doc on Monday and see if they have the results.

I would agree with you on waiting but according to Amazon they could have a dream station with heated hose and humidifier, and a mask at my doorstep by tomorrow. Thats why it's so tempting. Its so hard to just sit here exhausted, sleep terribly every night, not working, feeling heavy all the time, not leaving the house. By Nov 30th it'll be just a few days shy of three months.

The DreamStation is a great machine...

What we don't know if
1...confirmation that you for sure have OSA....that's a big one
2...what your pressure needs might be if you do have OSA
3...if your pressure needs are higher...the exhale relief that the ResMed machines offer is superior IMHO...so more comfortable especially at higher pressures
4...different algorithms between the 2 brands....based on my personal experience with both ResMed and Respironics...I prefer the ResMed
5...the ResMed is more likely to be less noisy and less likely to have annoying breathing noises (which I know you don't know what I am talking about) than the Respironics

If you were a family member of mine...I would advise the ResMed AutoSet...either S9 or AIrSense 10

Since you are in Canada you can order from secondwindcpap.com without a lot of RX hassle and save some money. They are good people.
https://www.secondwindcpap.com/Used_CPAP.html
Scroll way down to the bottom to see the ResMed machines offered.
They have a AirSense 10 AutoSet for $489
Or if you can stand the ugly pink...a S9 AutoSet for Her for $379.
They even have some new open box specials if used freaks you out.

Thank you for your advise here and those resources. I know that I don't know for sure, but i've heard so many success stories of people with my symptoms self treating that its very tempting. I am very tech savvy and a good troubleshooter, and I don't think I would have too hard a time interpreting Sleepyhead data and getting things dialled in. If you think the Resmed products are better though that is certainly something I will consider.

[Arlene1963]

If you live in Ottawa I have a spare that I would be happy to let you use if you are comfortable with that, until your appt on the 30th. An Airsense 10 Autoset for Her. That's the one I bought from Secondwind and it is now my back up machine. I now use the CPAP Elite which I obtained finally through the Ontario Govt Program when I saw the sleep doc and got a prescription.

BTW, I never regret having bought my APAP from Secondwind, and never regret that I sought help here when deciding to self treat.