My Story- 3 weeks into Treatment-- Better Energy Coming?

[NekkenKennekken]

So I just signed up for this site to share my experiences and hopefully receive a bit of feedback on what I can expect in the future.

My Story (it's long but I wanted to provide as much detail as possible--when I was trying to figure out what was wrong with me a post like this could have really helped me so maybe this will help someone realize they have sleep apnea): Currently I'm a 29-year-old male. I've snored since I was a baby. I've been exhausted daily since childhood--I remember napping in my parents' car on the way to baseball practice. I don't think I've waken up feeling amazing and refreshed since I was was 10 or 11 years old. I've been exhausted during the daytime for as long as I can remember. I've had high blood pressure since highschool. I've kicked/punched/knocked the sheets and the people in my bed. When I'd wake up the sheets would be all over the ground and I'd usually have a disgruntled look from my bed partner who had just endured a night of hell or had gotten up and moved to the couch or some other bed. Let me emphasize: I NEVER woke up gasping for air, I NEVER had trouble sleeping, I RARELY woke up to go the bathroom, I'm a SUPREME ATHLETE (we're talking 6'2, 215lbs pure muscle- no body fat), and I'm ONLY 29 years old. I didn't really fit the description of someone with sleep apnea (outside of the high blood pressure). So I guess I never really thought anything of these symptoms. Really I've just learned to live with the insane exhaustion I experienced daily. Despite the exhaustion, I was able to go to a tier one law school, I played division one college football, and I pursued many extracurricular activities. I just sucked it up. However, I didn't have much of a social life. I would sleep 10+ hours a day and take one to two naps a day. To control the blood pressure I took blood pressure medication for a number of years to normalize my blood pressure (uncontrolled it was 150/90 despite having a perfect diet and working out 1+ hours a day: Cholesteral tests were flawless).

Several years ago, during law school, I went to the doctor to get a prescription for Adderall because I had heard it helped people with chronic fatigue syndrome (that's what I thought I had). The doctor suggested that I undergo a sleep study. However, this doctor was horribly misinformed as to what a “sleep study” actually was because the initial test he prescribed was a take-home pulse ox test. I set it up, put it on my finger, and went to sleep—turned in the test the next day. A week later the doctor told me I didn't have sleep apnea (all based on a pulse ox test). I was disappointed that I still didn't really have an answer to my exhaustion. The doctor refused to prescribe me any meds based on my high blood pressure and my law-school status (I think the doctor thought I was trying to con him for a study aid—seems people abuse Adderall and ruin it for everyone else—this couldn’t have been farther from the truth). But, I chugged on through the overwhelming exhaustion that had become the standard. In 2010 I got a job as an attorney. Let me tell you--"sucking it up" became INSANE, but I did it. I literally had to pry my eyes open during the day. I would come home from a long day's work and crawl into bed and sleep 2-3 hours (yeah my naps were 2+ hours). It was a pretty miserable existence. I still managed to kick ass in the weight room and date. Don’t ask me how I managed but I did. It was hell.

The new job I received had a pretty good healthcare plan. With the new insurance in hand I went to a routine checkup with a new doctor to get my high-blood pressure medicine. If you believe in the hand of god literally directing you this was it. The doctor I had chosen (one of hundreds of doctors on the PPO insurance plan—it was totally random and lucky) was not only an internologist/general practitioner but a Board Certified Sleep Doctor. Luck of the draw. So the doctor looks at me and is completely weirded out by my high-blood-pressure medicine. He said, you're in perfect shape and young and you're taking a HIGH dose of blood-pressure medicine. THIS IS NOT NORMAL (apparently high blood pressure is one of the top symptoms of sleep apnea). He ordered a sleep test. It turned out I had sleep apnea (25 interruptions an hour and only during REM sleep). My sleep setting was 12 which the doctor thought was high considering only 25 interruptions per hour. What was weird about my Apnea, and why I likely didn’t register as having sleep apnea during my original pulse-ox test, was my apnea only occurred during REM. Apparently my apnea kept knocking me out of REM sleep so the pulse ox test was fooled (no apnea outside of REM so no oxygen deprivation outside of REM). I received a Phillips machine and a Res Med Quattro Mask. Don’t really know the details of the mask or machine out of it’s a 12 setting and it’s a cpap machine.

I started CPAP treatment 3 weeks ago. At the outset of the treatment (2 weeks before I started therapy) I decided to try an experiment: go cold turkey on my blood pressure meds. I had my pressure checked the night before I went on the mask just to make the pressure wasn’t still being helped by residual affect of the blood pressure medicine. It was VERY HIGH, 160 over 95. Yeah this was stupid but I was convinced the apnea was causing the pressure (people who have perfect diets and are 10% body fat don’t have high blood pressure unless something is wrong).

So far the results of my test have been somewhat interesting: (1) my blood pressure dropped from an average of 150/90 uncontrolled to 129/77 uncontrolled. I’m in the normal range now- I’m expecting this number to drop even further though considering my cardiovascular condition. (2) I am no longer feeling DEAD/EXTREME-EXHAUSTION during the day. I don’t feel amazing which I had hoped for but I don’t feel the need to run home and pass out after work. When I do go home and nap the naps are usually no longer than an hour to an hour and a half. Still a lot of nap time but it’s been cut in half. I still feel tired when I wake up, but I no longer hit the snooze 50 times until about 10 minutes before I have to run out of the door for work. I’m able to make it through the day without total exhaustion—I’m still tired but I do not feel that overwhelming fatigue that devastated my day. When I wake up from naps it’s not easy but I feel refreshed shortly therafter, something that rarely happened before (3) I have noticed that my libido has increased a bit (interesting side effect—I had a decent libido before but it wasn’t like this). (4) I no longer wake up in a cold sweat during the night. (5) I no longer destroy the bed covers. I wake up in the exact position I went to sleep in with covers in tack resting on me. (6) I no longer snore. I’m a mouth breather. My current gf has confirmed no snoring.

I guess you could say the results are pretty good. The results don’t really feel like HUGE improvements but they are improvements. I have heard that depending on duration of living with sleep apnea that sleep debt can make full recovery a lengthy process. Judging by my childhood snoring/exhaustion there is a good chance that my sleep apnea has been undiagnosed for possibly my entire life (29 years). I’m guessing I have A LOT of sleep debt to catch up. I hope that in the near future I have days where I wake up and I’m filled with INSANE energy (hasn’t happened yet but the results thus far are encouraging).

If anybody has any success stories where they went several months before feeling AMAZING I would really appreciate it. The treatment is a pain in the butt and leaves horrible red marks on the bridge of my nose (I’m a good looking guy but I’d gladly sacrifice vanity for saving my life and having energy). As I said the results for me have been good but I have been hoping for that “alive and ready to kick the crap out of the world” feeling. Haven’t felt that yet, but it’s still only 3 weeks in. Any cool stories out there (where you tell me that you felt only slightly better for a while until you eventually felt like you could conquer the world)?

Hope to hear from anyone who has any insight as to what I can further expect from treatment. I plan on coming back on here and providing a glowing success story if I ever reach that “AMAZING ALIVE” feeling. Also, hopefully my story has some meaning to someone out there—I was a weird case and maybe that might help someone who was misdiagnosed or undiagnosed. I’ve heard that sleep apnea is one of the most undiagnosed things out there.
Until Next Time!

[ameriken]

deleted

[Pugsy]

Welcome to the forum. Please add your equipment to your profile so we don't have to ask each time. It helps us help you. Here's how. wiki/index.php/Registering_Equipment_in_User_Profile

I wish I could give you a set amount of time before you reach the improvement level you yearn for. There is none.
Some reach it quickly, some take a long time, some never do.

I will share what I tell anyone who is questioning "how they feel" and it isn't what they expect or want.
Let's make sure your therapy is optimal. Let's get you comfortable using the software to evaluate how optimal it is or is there something that could stand some improvement.

I am also worse in REM sleep. 53 AHI and desats to 73%. It is common. I am also old enough to be your mother so bear with me. While the titration part of the sleep study can be right on, they can also not get it quite right so I want to see my own reports each night to make sure. They didn't get it right with me. There was some improvement but not a lot. Ended up I needed more pressure and a range of pressures using an APAP. Some night I do well with 10 to 12 and some night I need near 19 cm. Original RX was for straight cpap at 8 cm.

Let's find out exactly which machine you have and hope it is full data and I don't have to go into the "sorry your machine won't tell us anything" sermon.
Then we can see if you need the other sermon..about great numbers but there can be other things that affect how we feel unrelated to sleep apnea.

[jabman]

Hi NekkenKennekken and welcome.

I am sorry I can't help you with the type of success story you are looking for but only to offer that it can take a long time. You are difenitly came to the right place though. this board is a wealth of info and a wealth of good people to help.

I to was sent for a sleep study because of high blood pressure but unfortunately mine has not gone down after treatment, but then my family has a history of high blood pressure and heart troubles.

[NekkenKennekken]

So are there stories out where someone emerges from this so-called "sleep debt" after months of treatment and feels AMAZING? I feel like these boards are filled with people saying: (a) it'll take time but the results will come (what results are we even talking about), or (b)I felt amazing results from the beginning--changed my life. I guess I'm just looking for a story where there was a huge sleep debt, mask was utilized, results were moderate butthe person was still tired, after several months to a year of using the machine you feel like you could conquer the world. In other words I want to hear about people with slow starts that eventually had the awesome pleasure of waking up refreshed every morning of their life. Or at least most mornings and didn't need naps to function.

[Alshain]

Congratulations on your success. You are a rare breed as most of us don't have such immediate results. Me, I'm 7 months into treatment and I'm just now starting to feel like I might possibly someday be able to make it through the day. Every once in a while you here of that kind of success though. Now the trick is to keep it stable, and we can help with that. You should learn all about how your treatment works, this is a very young medical practice and even the best of sleep doctors don't know everything, so every bit of knowledge you have will help your own doctor manage your condition. We can help too, but as mentioned, it helps to know what equipment your working with, add your equipment to your profile.

[Alshain]

So are there stories out where someone emerges from this so-called "sleep debt" after months of treatment and feels AMAZING? I feel like these boards are filled with people saying: (a) it'll take time but the results will come (what results are we even talking about), or (b)I felt amazing results from the beginning--changed my life. I guess I'm just looking for a story where there was a huge sleep debt, mask was utilized, results were moderate butthe person was still tired, after several months to a year of using the machine you feel like you could conquer the world. In other words I want to hear about people with slow starts that eventually had the awesome pleasure of waking up refreshed every morning of their life. Or at least most mornings and didn't need naps to function.

Well that sounds like my story but I'm not quite to the ending that you describe. During the 7 months I've been very slowly feeling better. I feel less tired in the mornings, but I still have to shower at night because I can't force myself out of bed until the last minute. But I have noticed my eyes don't feel quite so heavy during the day. For a while there I felt like using my machine was making it worse, I could skip a night and feel better. Fortunately, people here talked me out of that practice.

[ozze_dollar]

Yes Doctors are slow to recognise OSA. I was constantly complaining to doctors that I was tired and it must be the tablets I am taking. They would just change the tablets and send me away. It wasnt until I had a problem with my heart and was seeing a cardioligist that it was diagnosed. I was doing the same old thing complaining that the drugs I was on were making me tired and he said to me very firmly"there is nothing wrong with the tablets" He said I should get a sleep test and the rest is history.

[Alshain]

Yes Doctors are slow to recognise OSA. I was constantly complaining to doctors that I was tired and it must be the tablets I am taking. They would just change the tablets and send me away. It wasnt until I had a problem with my heart and was seeing a cardioligist that it was diagnosed. I was doing the same old thing complaining that the drugs I was on were making me tired and he said to me very firmly"there is nothing wrong with the tablets" He said I should get a sleep test and the rest is history.

At least your diagnosis makes sense. Believe it or not my sleep study was scheduled by a rheumatologist.

[NekkenKennekken]

Your post seems to indicate your energy is similar to mine. However, when does the level of energy that you described as "might be able to make it through day" energy turn into "kicking the crap out of the day" energy? I want to be excited about dreams and goals and hobbies. Exhaustion crushes that. As I said I feel better- but I still need naps some days, I still need long nights of rest, I still need MORE ENERGY. lol. I remember a faint memory of what it used to be like to actually be excited to wake up. Now it's not so much fun. For what it's worth I think I would stay on the treatment even if it did just what it's done so far: cure blood pressure, make me less tired in the morning, no more gut-wrenching exhaustion, less naps, less nap-time, etc. It's all good, I just want MORE! Maybe I'm being greedy but I really want to wake up early, I mean real early: Go for a 5-mile run, make myself a cup of coffee, shower, have my coffee on the back porch looking as the sun rises in the morning. A clean non-rushed shaved, fix my hair, some cologne, a nice well-ironed suit with a matching tie. I leave the house feeling good- energetic healthy and alive with my mind sharp, ready to kick the crap out of any obstacles that come before my way. That's What I want.

[Alshain]

Your post seems to indicate your energy is similar to mine. However, when does the level of energy that you described as "might be able to make it through day" energy turn into "kicking the crap out of the day" energy?

Well, you aren't going to like the answer. Unfortunately I can't tell you the answer, because everyone is different. Some people take over a year and others are back to 'normal' in a few months. It depends on you sleep you need to recover (sleep debt), how well you take to the machine (acceptance), and how well you stick to using the machine (compliance). It also depends on how well your treatment is geared for you, which is the primary reason we've been trying in this thread to get you to edit your machine info in your profile, as you see ours in our signatures. If you have a data capable machine, we can teach you to read the numbers you get to see if your treatment is working, or if you need to talk to your doctor about changing the pressure. Around here we don't believe in blindly following the doctors orders. You should however be aware that some people on the forum don't believe the doctor is even necessary at all.

[Pugsy]

I leave the house feeling good- energetic healthy and alive with my mind sharp, ready to kick the crap out of any obstacles that come before my way. That's What I want.

Don't we all?

You have already seen significant improvement. More than some people have ever seen. I have spectacular nightly AHIs, no leaks, get 7 hours or so of sleep a night, never missed a night on the machine in over 2 years and the only huge improvement I have seen is the cessation of having to get up and pee 10 times a night and a reduction in morning headaches. I still sometimes want to nap. I still have borderline high blood pressure. I don't want to run a marathon. I don't want to kick the crap out of things (well... maybe sometimes). I have other issues that affect how I feel. So do all these other people here.

People get into trouble expecting to experience what someone else experiences just because it is what they want. We don't all get it and even if we did it doesn't happen the same with everyone. I don't want to rain on your parade but the "miracles" are few and far between. What will you do if you don't ever reach your desires?

Patience...you are young, healthy and lucky enough to find this out now and not 25 years from now. By your own admission you have likely had this problem most of your young life. That's a lot of damage over the years for your body to heal from.

Now please take the time to add your equipment so we can see if you have a machine that we can get you some software to make sure your therapy is optimal. At this point you have no clue if it is even working as best as it can.

BTW if you want success stores there are a ton of them in the top banner.... I bet what you are wanting has been mentioned there.

[ems]

I'm been on CPAP almost two months. I'm slowly starting to feel better. Biggest complaint was that I was so fatigued all day long that the littlest thing seemed like a huge deal. I'm talking about a shower and bushing my teeth! Doctor sent me for a sleep study and to my amazement, I learned that I had severe obstructive sleep apnea. Still not quite sure I believe it.

I've been 100% compliant since I started, which I believe is key. No, I didn't feel better immediately... took me a few weeks to get use to sleeping with the new thing on my face, as well as finding a comfortable position in bed, yada yada. However, just recently I realized I was feeling more alert and had more energy during the day than I've had in a very long time; along with having way less morning headaches, which was a huge issue for me.

I wish I could tell you that I felt better in one nite... not the case though. I do feel like I'm making progress and that's a very good thing. My hope is that I will continue to feel better as time goes by.

I wish you much success on this journey.

[Slartybartfast]

I'm one of the oddballs. Everyone is different, and I understand my results aren't typical. Felt great after the first night. Awoke refreshed and feeling alive for the first time in many years, then started realizing there was something to the repetitive dreams I had been having in which I was drowning/buried alive/suffocating in a confined space. 53 and I'm sure I've been choking in my sleep for decades. Was famous for my snoring, if that's any indication. I've been on the hose just over a year now. Feeling better every day. Have lost weight as the result of limiting my carb intake and, in general, eating more "paleo." BP dropped too. 120/70 this morning. I walk 3 miles or so every afternoon, not because I feel I need to, but because I WANT to. Before CPAP I didn't feel like exercising, and wanted to nap all the time. Now it's just the opposite. Haven't napped in many months, and am exercising because it feels good to do so. Sort of like the hamster on the exercise wheel, I guess.

[Cuda]

Maybe the machine is not doing all it can. What is it exactly? If people here knew that they could tell you how to extract information from it and share it here. The people here will walk you through the whole thing.