Recently diagnosed with sleep apnea

josh81 · Post by **josh81** » Tue May 05, 2015 12:37 pm

I recently was diagnosed with sleep apnea. However, the path to this was a long one. It all started with depression, anxiety, lack of attention & focus, fatique, never feeling like I get a good nights sleep and stomach/GI issues. I have seen multiple general physicians, psychiatrists and gastroenterologists. All had put me on various medications and nothing ever really helped without sacrificing something else. Finally, I used healthgrades to find a good gastro dr. He said I should get a sleep study done and see a psychiatrist as he saw my issues more mental. The last few gastro dr's just put me on expensive new acid reducers and never even told me to watch what I eat. So, I researched a good psychiatrist and he immediately recommended a sleep study. He did put me on medication, which has helped, but I still am not where I need to be and he does not want to change medication too much until I get the results of my sleep study. I finally got my sleep study done and they told me I had 49 apneas per hour. Which, I guess is over "severe" threshold. The dr said I would benefit from cpap treatment and I am going in a couple weeks for the 2nd study where they fit and find the right pressures for a cpap machine.

My question is has anyone else suffered from some of the things I mentioned? And if so, how much of a difference did it make when you started treating sleep apnea with a cpap machine?

grayghost4 · Post by **grayghost4** » Tue May 05, 2015 12:51 pm

Hello Josh and welcome to the Hose Nose society.You have come to the right place.

Most of us have had many and some have had all of the things that your listed, and more.
And Yes proper treatment with a Cpap can help if not overcome the symptoms ... it will never cure the problem.

Some have had instant results for the treatment ... others take months to see a benefit.

again welcome to Cpaptalk.

RustyShackleford · Post by **RustyShackleford** » Tue May 05, 2015 1:52 pm

josh81 wrote:My question is has anyone else suffered from some of the things I mentioned? And if so, how much of a difference did it make when you started treating sleep apnea with a cpap machine?

Hey Josh,
I had almost the same list of issues as you plus high blood pressure.

I've been on CPAP since March and I've seen improvement in almost every aspect. My anxiety is nearly gone (with some light meds too), I'm able to stay much more focused at work, and I've got more energy than I have had in years. I felt better after the first night I wore the mask. Just my personal results, but not sleeping well can lead to a lot of the issues you describe.

Hang in there, go back and get the 2nd titration study. You'll have your ideal pressures dialed in when you start your therapy at home.

You found a good source of info and support in this forum. There are lots of folks here who can help with CPAP questions. They have seen it all. Good luck!

LibbyLou · Post by **LibbyLou** » Tue May 05, 2015 1:58 pm

I had pretty much all the same symptoms for a year or so before having a sleep study done and being told I have sleep apnea last year. But thinking back, I can't really remember a time when I have felt refreshed in the morning, so who knows how long I've had *something* going on with my sleep. I also have a vitamin D deficiency and low ferritin, and have recently been told I have reflux, which I think is silent reflux. I think that could be a big part of it, which has maybe led to UARS, from what I've read.

One thing that I find interesting (or it could just be a coincidence), is that I didn't start having major issues until after I was sick with strep throat that went untreated. Dunno.

Yub Yub · Post by **Yub Yub** » Tue May 05, 2015 2:51 pm

josh81 wrote: It all started with depression, anxiety, lack of attention & focus, fatique, never feeling like I get a good nights sleep and stomach/GI issues.

My question is has anyone else suffered from some of the things I mentioned? And if so, how much of a difference did it make when you started treating sleep apnea with a cpap machine?

Hi Josh,

I started experiencing moderate - severe depression, anxiety(all day, felt like I was Super Stressed all day- things that had never made me anxious before were causing me to breakdown), chronic fatigue (I would wake up and feel like a truck hit me despite getting 8 hours of sleep),headaches, brain fog, heart palpitations, several years ago. All of these symptoms in addition to bad neuro-muscular symptoms (daily muscle twitching, cramping, pain, stiffness)- a lot like fibromyalgia. I was 21 at the time, I'm now 24. I've been healthy my whole life, no other health issues, and played sports in high school.

No matter what I did, I could not shake these symptoms. I tried yoga, stretching daily, exercise, changing diet, and played all sorts of mind games trying to get myself over the symptoms I was experiencing. I knew something was wrong but my doctors were bewildered. My primary care physician put me on elavil to help with the sleep, I was sent to neurologists, rheumatologists, and had all kinds of tests done- everything came back normal.

I felt like I was going crazy. Last November my PCP recommended I get a sleep study, kind of as a last resort. I had done a lot of research and knew sleep disorders were linked to depression, anxiety, fatigue, as well as fibromyalgia so I went ahead with it. I remember the sleep doc who did my preliminary screening telling me I probably did not have sleep apnea but they would go ahead and do the study anyways. As it turns out, during my study I had an AHI of 90 on my back!

I was prescribed a Bi-level ST machine and started treatment March 17th of this year. I've been on treatment now for about 6 weeks. I haven't been one of those cases where I felt better right away. I'm still experiencing symptoms, however, I would say overall I've seen a reduction. My muscular symptoms have decreased, I feel a little better during the day. I'm averaging 7-8 hours of sleep per night and only an AHI of 1.5.

My advice- definitely be an advocate for yourself to ensure you get the right machine, pressure setting, mask, etc. There's so many different machines and settings- getting it right the first time is paramount. Do your homework on machines and everything else (heated hose, mask fit, etc.) so that when you get your 2nd sleep study results you can have a candid conversation with your doc in case you feel something needs to be changed with what you're prescribed. In fact I'm going back in soon to get my machine's pressure adjusted and to discuss possibly moving to an ASV machine- I'm hoping one or both of these things will improve my results.

Second, once you start treatment, don't be discouraged if you don't see immediate improvements (let's hope you do though ). I came on here my first day and was reading about how so many people felt better their first day, and subsequently expected myself to feel better immediately, but after 6 weeks not seeing amazing results it can really bum you out, especially if you're suffering through a lot of additional symptoms on top of the typical 'just plain old tiredness'. It's important to continue working at it. I've come to the realization that maybe I just might be one of those individuals where it takes months, if not years to start legitimately feeling better.

Lastly, this may be a long shot, but have you gotten your Testosterone levels checked? Some of the symptoms you mentioned fall into that grayish category. I only mention this because I personally have an low Test. levels since 18 after doing a steroid stint. I was consistently getting Total Test. levels in the mid 300s which may be above the threshold most docs will consider putting you on testosterone replacement therapy but trust me, is Way below average for someone in their 20s. Anyways I started on TRT recently as well, and it has really helped out with the anxiety and depression and general sense of well being. Not an instant cure, because I still have a long way to go adjust the dosing and hit the 'sweet spot' so-to-speak, but I can tell you after 1 month of TRT I've already started feeling better. Something worth looking into if you haven't already.

Welcome to the forum!

LibbyLou · Post by **LibbyLou** » Tue May 05, 2015 3:12 pm

Yub Yub wrote: Second, once you start treatment, don't be discouraged if you don't see immediate improvements (let's hope you do though ). I came on here my first day and was reading about how so many people felt better their first day, and subsequently expected myself to feel better immediately, but after 6 weeks not seeing amazing results it can really bum you out, especially if you're suffering through a lot of additional symptoms on top of the typical 'just plain old tiredness'. It's important to continue working at it. I've come to the realization that maybe I just might be one of those individuals where it takes months, if not years to start legitimately feeling better.

Exactly! Apparently I am going to be one of those people who take months (hopefully not years, I won't make it! ) to feel better as well. I think I truly was prepared for some sort of miracle "cure" when I first got my machine, and here it is, what, 6 weeks or something now? And I still feel pretty much the same every morning, even if my AHI is low and it all looks like it's working according to the charts (well, for the most part, except for the nights when the aliens come or whatever).

Sonya · Post by **Sonya** » Tue May 05, 2015 6:30 pm

LibbyLou wrote:I think I truly was prepared for some sort of miracle "cure" when I first got my machine, and here it is, what, 6 weeks or something now? And I still feel pretty much the same every morning, even if my AHI is low and it all looks like it's working according to the charts (well, for the most part, except for the nights when the aliens come or whatever).

LOL! I was talking to someone about this just before I started on the CPAP. I have been through a few rounds of this, thinking that this procedure or that test will reveal the magic fix. So far, nothing. It sucks, but I just keep on trying.

If your numbers are looking good, maybe it is just a matter of time. I'll keep my fingers crossed for you that it's not going to take years.

LibbyLou · Post by **LibbyLou** » Wed May 06, 2015 11:45 am

Sonya wrote: LOL! I was talking to someone about this just before I started on the CPAP. I have been through a few rounds of this, thinking that this procedure or that test will reveal the magic fix. So far, nothing. It sucks, but I just keep on trying.

If your numbers are looking good, maybe it is just a matter of time. I'll keep my fingers crossed for you that it's not going to take years.

Ugh, it's draining! On top of already being drained. Thanks for the finger crossing. It better not take years.

Sonya · Post by **Sonya** » Wed May 06, 2015 7:25 pm

LibbyLou wrote:Ugh, it's draining! On top of already being drained.

I get it. I had to have a thyroid surgery and went online to read all these amazing stories of people waking from surgery and feeling symptom free. I always try not to get my hopes up, but after about 10 years of my Dr telling me everything was "normal", I wanted that to be what happened for me too. Wanna know what happened? Nothing. Then a blood test revealed I may have Cushings. But nope. And so on. Now it's OSA and CPAP is the end-all be-all cure of all cures for me. This time for sure!

After my disastrous beginnings with an awful sleep clinic visit and being totally overwhelmed when I received my machine, I was pretty pissed off at this whole process. I talked about just saying forget it and moving on with my life, sleep-deprived and sick all the time. So here I am. I'm trying to find a way to change all the nasty little sleep habits I've built up over the last 40-something years and get compliant by the end of this month. I can tinker and fiddle once insurance is off my back. I said last year that I'm sick and tired of feeling sick and tired and I'm going to keep at this thing until I get it right. What's the alternative? Right?

LibbyLou · Post by **LibbyLou** » Thu May 07, 2015 5:54 am

Sonya wrote: After my disastrous beginnings with an awful sleep clinic visit and being totally overwhelmed when I received my machine, I was pretty pissed off at this whole process. I talked about just saying forget it and moving on with my life, sleep-deprived and sick all the time.

Yes, I get it!! I have been pissed off at the whole process as well. I have also thought of just saying forget it (CPAP) and trying to figure out that magical *something else* that's causing my problems, and treating that and then magically my symptoms would disappear. Problem is, I can't find that thing.

Like this morning, my AHI was 0.7 for last night and everything looks pretty good on the graphs. But do I feel any better? Nope. Not a bit. So what's going on??? Am I just THAT sleep deprived that it's truly going to take years before I feel better, or what?

I have been tested for everything under the sun so far and it's all been negative, aside from being Vitamin D deficient (and that has come up since I first had my levels tested) and having low ferritin. I've been taking iron for a month and a half or so now for that. I know my eating habits are still kinda crap, but I'm working on that as well, along with forcing myself back into exercising to try and lose some of the weight I've gained since this whole fiasco started. I just don't know what else to do or what else to look into at this point. The one thing I haven't really had tested is my heart, and I don't really want to do that quite yet (not wanting to add more medical bills to the mix if I don't HAVE to - but how do I know if I HAVE to or not??). The only thing heart related I know of is the lipid panel I had done said I had a super low risk of coronary heart disease.

Argh! But I'm trying to remain positive.

robysue · Post by **robysue** » Thu May 07, 2015 8:02 am

LibbyLou wrote:
Sonya wrote: After my disastrous beginnings with an awful sleep clinic visit and being totally overwhelmed when I received my machine, I was pretty pissed off at this whole process. I talked about just saying forget it and moving on with my life, sleep-deprived and sick all the time.
Yes, I get it!! I have been pissed off at the whole process as well. I have also thought of just saying forget it (CPAP) and trying to figure out that magical *something else* that's causing my problems, and treating that and then magically my symptoms would disappear. Problem is, I can't find that thing.

The thing is, for chronic medical problems there is usually no magic *something* that fixes everything instantly.

Like this morning, my AHI was 0.7 for last night and everything looks pretty good on the graphs. But do I feel any better? Nope. Not a bit. So what's going on??? Am I just THAT sleep deprived that it's truly going to take years before I feel better, or what?

You later go on to say that you've been tested for the other usual culprits that cause the daytime fatigue, excessive daytime sleepiness, and brain fog issues that so many people with OSA have to deal with.

You are six weeks into PAPing, but you're still not feeling different. On the one hand, that's a lousy piece of bad luck; on the other you can count your blessings that you didn't experience a severe worsening of how you feel the way I did when I was a newbie. Still, six weeks is long enough where it's easy to see why the "Will this ever work for me" feelings are there.

It may be worth starting to explore other potential causes of plain old bad sleep now that you are actually breathing normally at night. So let's start with the usual sleep related questions:

1) Are you on any medication for any medical condition? If so, what are they and what are the potential side affects? A lot of very commonly prescribed medications for all kinds of conditions can adversely affect the quality of sleep.

2) How much sleep are you actually getting on a nightly basis? And how much time are you spending in bed? If you are getting less than 6 or 7 hours of sleep on average, that may be enough to cause the on-going problems with how you feel. If you are spending long times awake while in bed, that can cause on-going problems with how you feel, even when the total sleep amount is 6 or 7 hours. (In other words, if you have to spend 8 hours in bed to try to get 6 hours of sleep, those extra two restless hours may be what's triggering the on-going problems.)

3) What does the caffeine and alcohol consumption look like? Too much of either can adversely affect the sleep. Drinking either too close to bedtime, even in moderate amounts, can adversely affect the sleep.

4) What does the overall sleep hygiene look like? Do you have a regular bedtime? A regular wake up time? Do you sleep in very late on days off? Do you spend a lot of time watching tv in bed? web browsing in bed? playing with your smart phone or tablet in bed? eating in bed?

5) When is supper time in relationship to bedtime? Do you have a snack between supper and bedtime? Eating too little in the evening can leave you too hungry to sleep well. But eating too close to bedtime can cause problems of its own with respect to sleep quality.

6) Are you dealing with any kind of chronic pain issues? It's difficult to get high quality sleep when you are in pain all the time.

Sometimes cleaning up the sleep hygiene plays a very important role in helping the CPAP do its magic.

princetontiger · Post by **princetontiger** » Wed Jul 17, 2019 8:42 am

Yub Yub wrote: ↑
Tue May 05, 2015 2:51 pm

josh81 wrote: It all started with depression, anxiety, lack of attention & focus, fatique, never feeling like I get a good nights sleep and stomach/GI issues.

My question is has anyone else suffered from some of the things I mentioned? And if so, how much of a difference did it make when you started treating sleep apnea with a cpap machine?
Hi Josh,

I started experiencing moderate - severe depression, anxiety(all day, felt like I was Super Stressed all day- things that had never made me anxious before were causing me to breakdown), chronic fatigue (I would wake up and feel like a truck hit me despite getting 8 hours of sleep),headaches, brain fog, heart palpitations, several years ago. All of these symptoms in addition to bad neuro-muscular symptoms (daily muscle twitching, cramping, pain, stiffness)- a lot like fibromyalgia. I was 21 at the time, I'm now 24. I've been healthy my whole life, no other health issues, and played sports in high school.

No matter what I did, I could not shake these symptoms. I tried yoga, stretching daily, exercise, changing diet, and played all sorts of mind games trying to get myself over the symptoms I was experiencing. I knew something was wrong but my doctors were bewildered. My primary care physician put me on elavil to help with the sleep, I was sent to neurologists, rheumatologists, and had all kinds of tests done- everything came back normal.

I felt like I was going crazy. Last November my PCP recommended I get a sleep study, kind of as a last resort. I had done a lot of research and knew sleep disorders were linked to depression, anxiety, fatigue, as well as fibromyalgia so I went ahead with it. I remember the sleep doc who did my preliminary screening telling me I probably did not have sleep apnea but they would go ahead and do the study anyways. As it turns out, during my study I had an AHI of 90 on my back!

I was prescribed a Bi-level ST machine and started treatment March 17th of this year. I've been on treatment now for about 6 weeks. I haven't been one of those cases where I felt better right away. I'm still experiencing symptoms, however, I would say overall I've seen a reduction. My muscular symptoms have decreased, I feel a little better during the day. I'm averaging 7-8 hours of sleep per night and only an AHI of 1.5.

My advice- definitely be an advocate for yourself to ensure you get the right machine, pressure setting, mask, etc. There's so many different machines and settings- getting it right the first time is paramount. Do your homework on machines and everything else (heated hose, mask fit, etc.) so that when you get your 2nd sleep study results you can have a candid conversation with your doc in case you feel something needs to be changed with what you're prescribed. In fact I'm going back in soon to get my machine's pressure adjusted and to discuss possibly moving to an ASV machine- I'm hoping one or both of these things will improve my results.

Second, once you start treatment, don't be discouraged if you don't see immediate improvements (let's hope you do though ). I came on here my first day and was reading about how so many people felt better their first day, and subsequently expected myself to feel better immediately, but after 6 weeks not seeing amazing results it can really bum you out, especially if you're suffering through a lot of additional symptoms on top of the typical 'just plain old tiredness'. It's important to continue working at it. I've come to the realization that maybe I just might be one of those individuals where it takes months, if not years to start legitimately feeling better.

Lastly, this may be a long shot, but have you gotten your Testosterone levels checked? Some of the symptoms you mentioned fall into that grayish category. I only mention this because I personally have an low Test. levels since 18 after doing a steroid stint. I was consistently getting Total Test. levels in the mid 300s which may be above the threshold most docs will consider putting you on testosterone replacement therapy but trust me, is Way below average for someone in their 20s. Anyways I started on TRT recently as well, and it has really helped out with the anxiety and depression and general sense of well being. Not an instant cure, because I still have a long way to go adjust the dosing and hit the 'sweet spot' so-to-speak, but I can tell you after 1 month of TRT I've already started feeling better. Something worth looking into if you haven't already.

Welcome to the forum!

Yub Yub

Curious if you have an update? I have the same exact neuromuscular symtoms as yourself. I'm 31, and went through so many tests. Even the best doctors in Manhattan.

I was diagnosed with Enhanced Physiological Tremor, as some call BFS. I had moments where I'd jump out of bed or gasp for air... then, the twitching and tremors started. I had no sickness or illness, and I notice some folks scream "Lyme", but I do not have any of the other symptoms (illness, fatigue, cramps).

I'm planning to get a sleep study done because my sleep since BFS started has been poor. I get maybe 4 hours at most in one stretch (sometimes 5-6 if I'm lucky), but I don't feel like the sleep was the same as I once had. I was a great sleeper before all of this. Getting 7-8 (and feel amazing). I'm not overweight, and I did a great mix of exercise before BFS. Taking a few walks each day during work, too. I suspect it may be due to some type of sleep apnea.

D.H. · Post by **D.H.** » Wed Jul 17, 2019 9:34 am

To Josh,

I hope all goes well. Knowing what I know now, I should not have had to wait even the four weeks or so from first seeing a sleep doctor to getting a machine. Since that was in 1999, I don't remember how long it took but I don't believe that I don't believe it was longer than four weeks.

Also, make sure that you get the right mask. This is even more critical than the machine as it's the point of contact!

jimbud · Post by **jimbud** » Wed Jul 17, 2019 10:04 am

D.H. wrote: ↑
Wed Jul 17, 2019 9:34 am
To Josh,

I hope all goes well. Knowing what I know now, I should not have had to wait even the four weeks or so from first seeing a sleep doctor to getting a machine. Since that was in 1999, I don't remember how long it took but I don't believe that I don't believe it was longer than four weeks.

Also, make sure that you get the right mask. This is even more critical than the machine as it's the point of contact!

Recently diagnosed with sleep apnea
by josh81 » Tue May 05, 2015 1:37 pm

JPB

dogsarelife · Post by **dogsarelife** » Wed Jul 17, 2019 10:06 am

princetontiger wrote: ↑
Wed Jul 17, 2019 8:42 am

Curious if you have an update? I have the same exact neuromuscular symtoms as yourself. I'm 31, and went through so many tests. Even the best doctors in Manhattan.

I was diagnosed with Enhanced Physiological Tremor, as some call BFS. I had moments where I'd jump out of bed or gasp for air... then, the twitching and tremors started. I had no sickness or illness, and I notice some folks scream "Lyme", but I do not have any of the other symptoms (illness, fatigue, cramps).

I'm planning to get a sleep study done because my sleep since BFS started has been poor. I get maybe 4 hours at most in one stretch (sometimes 5-6 if I'm lucky), but I don't feel like the sleep was the same as I once had. I was a great sleeper before all of this. Getting 7-8 (and feel amazing). I'm not overweight, and I did a great mix of exercise before BFS. Taking a few walks each day during work, too. I suspect it may be due to some type of sleep apnea.

Hi, welcome to cpaptalk. this is an old thread unfortunately, from 2015. If you click on yub yub's user name, you can see they haven't been active on the forums since 2018, but you could always try to direct message them (click on the little chat icon under their username)

If you make a new post about all of your own issues, instead of sticking a response onto this old thread, then that is easier for everyone else to read and follow.

Recently diagnosed with sleep apnea

Recently diagnosed with sleep apnea

Re: Recently diagnosed with sleep apnea

Re: Recently diagnosed with sleep apnea

Re: Recently diagnosed with sleep apnea

Re: Recently diagnosed with sleep apnea

Re: Recently diagnosed with sleep apnea

Re: Recently diagnosed with sleep apnea

Re: Recently diagnosed with sleep apnea

Re: Recently diagnosed with sleep apnea

Re: Recently diagnosed with sleep apnea

Re: Recently diagnosed with sleep apnea

Re: Recently diagnosed with sleep apnea

Re: Recently diagnosed with sleep apnea

Re: Recently diagnosed with sleep apnea

Re: Recently diagnosed with sleep apnea

Machine	Mask

Additional Comments: Auto PAP; 13.5 cmH2O min - 20 cmH2O max