Newly Diagnosed

[newcpap]

hello,

I have been diagnosed with mild to moderate sleep apnea couple of weeks ago and was prescribed ResMed S9 AutoSet, which I started using 10 days ago. I have been struggling with the following symptoms for over 10 years now:

1. Extreme fatigue
2. Difficulty concentrating and forgetfulness
3. Lack of morning erection and difficulty getting or maintaining one during the day
4. loss of libido
5. Obesity and difficulty losing weight even with exercise
6. Depression, anxiety and sever irritability
7. Daytime headaches, especially in the morning

for 10 year, I have been told by almost 20 doctors that I have visited that I am perfectly fine and that it is all in my head. I was relieved to know that I have sleep apnea (I know this sounds weird). At least I found something that might explain the symptoms I had.

My experience with CPAP so far is the following:

1. I started feeling really good in 2-3 days of starting the treatment. Virtually all the symptoms listed above started to improve noticeably.
2. The feeling-good phase lasted for only 3 days. Then, I started to feel like the old days (pre-CPAP) again.
3. Now, day 10 I started feeling a bit better, thought not as good as the first feeling-good phase.

My questions to people who might have had similar symptoms:

1. I have seen a lot of web sites saying that all of the symptoms I listed above can be attributed to the sleep apnea. Is it true that these symptoms can be caused by mild-moderate sleep apnea?

2. Does the treatment result happen suddenly when using CPAP and one should expect more of gradual relief of symptoms over weeks or months?

3. I was given the option to go for surgery to fix my deviated nasal septum and clear the air passage in my mouth/throat. But I am hesitant to go for surgery as I am not 100% sure that the symptoms I have are all from sleep apnea. Any one had such symptoms and tried either surgery or long-term CPAP treatment?


Thanks a lot for your help!

[Bill44133]

Your symptoms sure sound like mine.. Though I was diagnosed severe. You have what is called a sleep debt that you owe your body. It took me a good 6 months to be able to make it through the day without taking a nap.

Just make sure that you are monitoring your data. If your mask is leaking air this will compromise your therapy.

Lots of help here... You have come to the right place..

Good Luck!

[chunkyfrog]

The let-down you felt after the first 3 days is normal; just a part of your body adjusting to therapy.
I felt that I may have been addicted to some of my stress hormones, so as they dropped, I felt a bit "off".
Welcome to what "normal" feels like. You will be healing in ways you can and can't see.

[SleepWellCPAP]

Though I am not a sleep apneic patient myself, I have worked with thousands and my answer to your first question is absolutely yes.

For question #2, most of my clients experience relief of symptoms gradually. It is very rare that a sudden resolution presents itself.

Regarding surgery suggested in question #3, most people do not achieve their expected results from the surgical options available. If your symptoms were in fact all from sleep apnea, surgery would most likely lessen, but not cure them in the long run. Though every case is different and should be discussed with your doctor, (I am not a doctor by the way), I would suggest you approach going under the knife very carefully.

Hope that helps!

[newcpap]

Thanks everyone for the response. I guess the take-home message is hang-in-there and be patient!

Did anyone feel resolution of sexual symptoms as well (lack of libido and ED)?

[chezdan9]

I could have written the EXACT same letter as you, even the length of time since I just got "on the hose" about a week ago. Believe it or not, I have seen a change in item #3 you listed above! What a shock, surprise, and early Christmas present. I was actually giggling about it and woke my wife up - not for what you would expect but more from astonishment..."Hey! Look at that, honey!!"

It is frustrating that it was through my wife's goading that I looked into my sleep problems and not because my physician recommended it. My doctor has me on all kinds of medication for "resistant" hypertension, depression, frequent urination, restless leg syndrome, and e.d. I have told him I have problems concentrating and that I am exhausted all the time and can fall asleep at the drop of a hat. His suggestion? Watch my diet and get to the gym more often. "Have a regular bedtime routine," he said. He is a good doctor and a very nice man, but it angers me that he couldn't see the big picture and tie all of this together. I guess a lot of doctors take the "micro" approach and see each symptom as a separate issue rather than the "macro" or wholistic approach. I am so hopeful that my CPAP therapy will resolve many if not most of these issues. Oh, and I am watching my diet, going to the gym, and keeping a regular bedtime routine now.

Good luck to you and keep us posted!

[stag0]

The "instant response" to cpap treatment in my lab is about 40% instant. So, hang in there. Get your support group together too.
As to the surgery. go with your ENT reccomendation; get two opinions and be prepared for much pain.

Look into your diet. obesity will hang on to toxins. As you are healing, those toxins will be flushed out and cause irritability and bowel changes. I use a water-lemon mix or a Barg's apple cider water mix to detox.

[MitzyG]

I am also new on CPAP. I "sleep" 8 hrs a day, but I struggle to wake up and force myself out of bed because I have to go to work. On the weekend, when I don't have a schedule and don't use an alarm, I am sleeping 10+ hrs. The sleep apnea is likely to have been happening for nearly 20+ years.

With the holidays coming up, I would like to take advantage and try to quit drinking caffeine (which probably also affects the situation). I'm curious though...is it ok to sleep until I wake up naturally or should I stay on a firm 8 hr schedule and get out of bed regardless if I'm tired? I'm trying to figure out if I can 1) pay the sleep debt faster and 2) whether sleeping until I naturally wake up would make the sleep debt better or worse? If you suggest sleeping only 8 hrs and waking up regardless, how do you feel about a day time nap - is this ok or not ok? I anticipate that if I'm not drinking caffeine and I sleep 8 hrs, I will need a nap...

[Pugsy]

I am also new on CPAP. I "sleep" 8 hrs a day, but I struggle to wake up and force myself out of bed because I have to go to work. On the weekend, when I don't have a schedule and don't use an alarm, I am sleeping 10+ hrs. The sleep apnea is likely to have been happening for nearly 20+ years.

With the holidays coming up, I would like to take advantage and try to quit drinking caffeine (which probably also affects the situation). I'm curious though...is it ok to sleep until I wake up naturally or should I stay on a firm 8 hr schedule and get out of bed regardless if I'm tired? I'm trying to figure out if I can 1) pay the sleep debt faster and 2) whether sleeping until I naturally wake up would make the sleep debt better or worse? If you suggest sleeping only 8 hrs and waking up regardless, how do you feel about a day time nap - is this ok or not ok? I anticipate that if I'm not drinking caffeine and I sleep 8 hrs, I will need a nap...

You were given a "brick" and the S9 Autoset is supposed to arrive in a couple of days...is that correct? That's what I understood from your previous post.
You need to evaluate your therapy to make sure it is optimal first. If your therapy isn't optimal changing caffeine intake is unlikely to make much of a difference (if it was ever a problem in the first place).

In general...napping..if you nap too long or too late in the afternoon can and will impact ability to sleep well at night..so we sometimes create a self feeding little monster.

[MitzyG]

Pugsy - Yes, he tried to convince me that the brick was "working well" and like I said, the best interpretation of that is that it "technically" prevented the hypopneas but was so uncomfortable that it "wasn't working" for me. I suspect that he gave in and let me have the S9Autoset to avoid losing "the sale" altogether. He made a strange comment when I insisted on a new machine - he said "Are you willing to BUY a machine?" Uh...yeah! I said I'd rather pay more, get a machine that worked. Suddenly, they found a way to collect against my insurance and get the machine I wanted.

Be prepared...once I get my S9Autoset, I'll probably be asking for help with the Sleepyhead. I've loaded it on my computer and I've tried to read your advice. I have a Philips Respironics right now as a loaner (another option that didn't happen pre-brick..but suddenly became available after I refused the brick)...I had issues getting the data because the files didn't seem to be created (the only files on there were another patient's based on the dates). Since the loaner is only 1 wk, I figure...wait, start analyzing the data from my new machine.

[Pugsy]

Be prepared...once I get my S9Autoset, I'll probably be asking for help with the Sleepyhead.

You won't be the first and I am sure so won't be the last.
Only potential problem if you need me...I probably won't be on the internet all that much (if at all) from Dec 20 to 27...going to visit my daughter and grandson for the holidays so if you run into trouble and the forum members can't help...I won't be immediately available.
Going to Las Vegas for my annual Christmas with the kids deal but staying a little longer this time due to when XMas day is and the way the flights are limited to 2 days a week here.

[Apneanderthal]

I had a very similar experience. I felt better than I've ever felt within a couple of days when I first started therapy. I felt amazing! Life changing! But within two weeks I was back to feeling tired again. It's been three months and I'm still tired (doesn't help that I'm battling insomnia). I'm hoping things will slowly improve as I get to the six month mark! Hang in there.

[newcpap]

I went to see my doctor today for a followup- This is almost my 3 weeks now on CPAP. He looked at the numbers for the first 2 weeks of therapy and asked me to do the following:

1. Adjust the min-max to be 6-14. I had it on 7-20 originally.
2. Tighten my mask pretty well, as he thinks the set back I had with my symptoms (after 2-3 days of feeling really good) is related to leakage. I don't know if I should trust his judgment on this, as he referred to few nights where the max leakage was 157. I tried to explain to him that looking at the detailed chart for those nights doesn't show any spike in leakage beyond 24, but he still thinks that leakage is a factor in my symptoms. I am going to try to tighten the mask more and see if this helps.

Current symptoms:
1. Gained some weight since after I started CPAP!!!! I know this is weird, but I felt like I lost some weight initially (when I was feeling really good at the beginning), and I think I started eating more . Now I am trying to diet and see if the weight goes off.

2. Still feeling the same symptoms as before I started the CPAP, but probably not to the same degree. Yet, I don't feel that good any more..


Just updating and sharing my experience.

[49er]

I went to see my doctor today for a followup- This is almost my 3 weeks now on CPAP. He looked at the numbers for the first 2 weeks of therapy and asked me to do the following:

1. Adjust the min-max to be 6-14. I had it on 7-20 originally.
2. Tighten my mask pretty well, as he thinks the set back I had with my symptoms (after 2-3 days of feeling really good) is related to leakage. I don't know if I should trust his judgment on this, as he referred to few nights where the max leakage was 157. I tried to explain to him that looking at the detailed chart for those nights doesn't show any spike in leakage beyond 24, but he still thinks that leakage is a factor in my symptoms. I am going to try to tighten the mask more and see if this helps.

Current symptoms:
1. Gained some weight since after I started CPAP!!!! I know this is weird, but I felt like I lost some weight initially (when I was feeling really good at the beginning), and I think I started eating more . Now I am trying to diet and see if the weight goes off.

2. Still feeling the same symptoms as before I started the CPAP, but probably not to the same degree. Yet, I don't feel that good any more..


Just updating and sharing my experience.

Hi newcap,

I would go with your gut instinct regarding leaks as severely tightening a face mask like the quattro fx is counter productive and can lead to more discomfort and fragmented sleep. It sounds like he is reading the information wrong and even if he was correct, if you needed to severely tighten it to work, you have the wrong mask.

Unfortunately, it takes time for many people and it sounds like you are making a bit of progress. Hang on to that.

Sorry, you were disregarded by your doctors. I can't make that claim even though I wasted 15 years of my life on psych meds when I was dealing with undiagnosed apnea. But unlike you, I never made any complaints that suggested sleep apnea like you did.

49er

[newcpap]

It has been a month since I started my APAP treatment. Few days after starting the treatment, I started to feel good, but this feeling lasted only for 2-3 days. My doctor asked me to keep the pressure min-max to 6-14. Out of desperation, 10 days ago, I changed the ERP settings from 2 to 1 and felt a bit better. Then , I disabled EPR all together and started to feel good again. However, this good feeling lasted for 3-4 days only. I am looking at my numbers almost daily and AHI, leak, flow graph all look OK. But I am back to feeling bad again. My doctor asked me to raise the pressure min-max to 7 - 15. While I know that progress takes time, I expected to start feeling better slowly (but consistently), which is not happening for me. Last time I saw the doctor, he told me to try the new pressure settings for 2 weeks and see. If I don't feel better he offered to do another sleep study while I am using the APAP machine to see if it is actually working.

After reading couple of books about sleep apnea, I resorted to the fact that using APAP is the safest treatment option. However, I am considering fixing my deviated nasal septum (I won't mess with any of the tissues in my throat though) to see if this helps with the therapy.


Did anyone have similar bounces of feeling good/bad as I described above? anything to look for or check that might help?



Thanks.