Diagnosed with Severe at 21 and 15% bodyfat

So since I was 16, I have been having some major issues with staying awake during the day. My body would naturally keep me awake whenever I am doing something I enjoy, such as my job or video games. But anytime I was in class, or sometimes while driving... an overwhelming sleep spell would hit me. I would have to fight to keep my eyes open, sometimes when I am driving down the interstate I am literally trying to keep my eyes open with distorted vision.

I had always assumed that I had narcolepsy, and I had ADHD as well which is common for narcoleptics. So they put me on Adderall, which helped. But slowly I have been falling down in a spiral.

I have no desire for sex at all, I feel like an 80 year old man. I suffer from impotence and because of that I don't want to meet anyone for fear of embarrassment, not to mention I am also gay and they are very hypersexualized. Reaching 22 this year, I would still claim myself a virgin compared to the rest of the community because I just don't have any experience. But it wasn't always like this, I used to have urges (how else did I find out I was gay...) but it's pretty much non existent now.


So after hours of research, I documented all of the symptoms I had.

* High Blood Cell Count
* Low T at 200ng/L (Normally 600-1000 at my age)
* ADHD (lack of dopamine)
* Daytime Sleepiness
* Depression
* Impotence
* Fatigue
* Getting better rest on 4 hours of sleep than 8 hours


No one believed I had sleep apnea, but I went out of everyone suggestions stating I was crazy for thinking I had it and all they would do is give me sleeping pills.

So I just had the test... and they told be that I stop breathing on average 12 times an hour. But when I reach REM, it was at 36 times per hour. Which puts me in the Severe Category, which I don't understand. I am 21, 15% bodyfat and yet somehow I get obstructive sleep apnea... and on that note I get SEVERE apnea.

I am really afraid here, I don't know if Sleep Apnea will help me with all of my problems I have. I think I am expecting too much for it to resolve, can sleep apena really cause those problems I have to be that extreme? If so, why is the symptoms getting worse all of a sudden?

If sleep apnea is the cause of all of this, when can I expect to recover from all of these problems? Will it take months, weeks, days? What happens if I don't like the CPAP treatment, will I forever be doomed?

Hi, not suggesting you don't have apnea at all, but have you ever had hormonal level tests? You could have a problem as well as apnea (or of course not have either).

"Forever doomed'? Doomed to what - wear a little cover on your nose when asleep? For one thing, even if you need Cpap, technology is changing so fast, that the likelihood of your using Cpap for long therapy-wise is not terrific - Apple will probably come up with a cooler fix very soon!

For now, just do one day at a time, one step at a time, and see how things go. Don't forget you're looking at everything through a miserable lens now, one that feels and acts like depression, but you may feel so good once treated that you'll be thrilled to have found an answer (for now). And if Cpap doesn't help all your problems, you'll tackle the others as they come, in the same way.

I know it's hard to deal with things at your age, really, but be glad you a) have found a possible answer before your body gets totally wrecked and much worse things happen, and b) it'll fall into perspective and be like brushing your teeth - just another little routine to follow, once you get going.

The one thing I wouldn't do is run to get surgery - it's been shown over and over to be very unhelpful (except to the wallets of whoever's doing it)!

ambidex wrote: 15% bodyfat and yet somehow I get obstructive sleep apnea... and on that note I get SEVERE apnea.

40% of people with sleep apnea are slim. Another segment was slim until sleep apnea developed and caused them to gain weight.

ambidex wrote: I am 21,

Many people have sleep apnea all their life and are just diagnosed later in life after much damage has been done. Be glad you have been diagnosed early.

Effects untreated: heart disease, stroke, diabetes, anxiety, depression, ADHD, dementia.

Anything can go wrong anywhere in your body. Every cell in the body requires oxygen. Not enough oxygen and the cells don't function well.

Get a CPAP now.

Being so young, I would research dentists who use appliances to do palate expansion/jaw enlargement. Find a good one and get a consultation.

ambidex wrote:What happens if I don't like the CPAP treatment

Don't let that be an option. Summon up some courage young man.

BTW, until you get your CPAP, avoid backsleeping entirely. In most people, obstructive sleep apnea is more severe on the back. Sleep on your sides or stomach.

I dont know about high blood cell count, but every other symptom you list is highly likely to improve a great bit with CPAP therapy. I am brand new to CPAP (less than a week) but I know I will eventually find the right mask and get used to this. Sure, it sucks, or blows, but its your health!

BTW, I am not as young as you, at 37, but I eat right, work out a ton, and am otherwise in great health, fit, etc. And still have sleep apnea. It just happens. I am blessed in so many ways so this is just an obstacle I will have to overcome and I will. You will too.

ambidex wrote:So since I was 16, I have been having some major issues with staying awake during the day. My body would naturally keep me awake whenever I am doing something I enjoy, such as my job or video games. But anytime I was in class, or sometimes while driving... an overwhelming sleep spell would hit me. I would have to fight to keep my eyes open, sometimes when I am driving down the interstate I am literally trying to keep my eyes open with distorted vision.

I had always assumed that I had narcolepsy, and I had ADHD as well which is common for narcoleptics. So they put me on Adderall, which helped. But slowly I have been falling down in a spiral.

I have no desire for sex at all, I feel like an 80 year old man. I suffer from impotence and because of that I don't want to meet anyone for fear of embarrassment, not to mention I am also gay and they are very hypersexualized. Reaching 22 this year, I would still claim myself a virgin compared to the rest of the community because I just don't have any experience. But it wasn't always like this, I used to have urges (how else did I find out I was gay...) but it's pretty much non existent now.


So after hours of research, I documented all of the symptoms I had.

* High Blood Cell Count
* Low T at 200ng/L (Normally 600-1000 at my age)
* ADHD (lack of dopamine)
* Daytime Sleepiness
* Depression
* Impotence
* Fatigue
* Getting better rest on 4 hours of sleep than 8 hours


No one believed I had sleep apnea, but I went out of everyone suggestions stating I was crazy for thinking I had it and all they would do is give me sleeping pills.

So I just had the test... and they told be that I stop breathing on average 12 times an hour. But when I reach REM, it was at 36 times per hour. Which puts me in the Severe Category, which I don't understand. I am 21, 15% bodyfat and yet somehow I get obstructive sleep apnea... and on that note I get SEVERE apnea.

I am really afraid here, I don't know if Sleep Apnea will help me with all of my problems I have. I think I am expecting too much for it to resolve, can sleep apena really cause those problems I have to be that extreme? If so, why is the symptoms getting worse all of a sudden?

If sleep apnea is the cause of all of this, when can I expect to recover from all of these problems? Will it take months, weeks, days? What happens if I don't like the CPAP treatment, will I forever be doomed?

You need to see a doctor and get scheduled for a sleep study...then you will know for sure. If it is SA, a CPAP may be your answer. If SA is not diagnosed you will know that it is some other medical problem. To answer you other question...If you need a CPAP and don't like the treatment....
you will have a miserable life.

LSAT wrote:

ambidex wrote: So I just had the test... and they told be that I stop breathing on average 12 times an hour. But when I reach REM, it was at 36 times per hour. Which puts me in the Severe Category, which I don't understand. I am 21, 15% bodyfat and yet somehow I get obstructive sleep apnea... and on that note I get SEVERE apnea.

You need to see a doctor and get scheduled for a sleep study...then you will know for sure. If it is SA, a CPAP may be your answer. If SA is not diagnosed you will know that it is some other medical problem. To answer you other question...If you need a CPAP and don't like the treatment....
you will have a miserable life.

LSAT,

The OP has already seen a doctor and has already had a diagnostic sleep study. The results of the sleep study are quoted above: Overall AHI = 12 (mild OSA), but REM AHI = 36 (severe OSA), and the diagnosis of SEVERE OSA has been made based on the REM AHI. Which is the correct diagnosis in this case.

What is not clear is whether the OP has scheduled a follow up titration study. Or whether the doc just wants to do the titration using an APAP set wide open.

I'm a 24 year old male 7-8% body fat and found out a month ago I have sleep apnea and an Ahi of 90. I was as surprised as you were. I wouldn't linger on it. I still think it at times maybe they screwed up the sleep study and I don't have sleep apnea. But there have been a few times in the last month on treatment I've felt a little better. Keep your head up and get on your cpap ASAP. You'll probably start seeing improvements within the first few months.

Yub Yub wrote: I still think it at times maybe they screwed up the sleep study and I don't have sleep apnea.

Where's Jim? De-Nile?

hifiaudio wrote:every other symptom you list is highly likely to improve a great bit with CPAP therapy

+1

wrote:high blood cell count

This may be a body compensating for the lack of sufficient oxygen. It produces more red blood cells to try to carry more oxygen. CPAP should bring this down.

I know I have sleep apnea, I got confirmed with a sleep study. Everyone thought I was wasting my money or was a hypochondriac, because I researched all of my symptoms and diagnosed myself.


What I don't understand is, why is it so severe and am I expecting too much for the treatment? Is it really going to fix all my symptoms, and if so how long will take.

ChicagoGranny wrote:

Yub Yub wrote: I still think it at times maybe they screwed up the sleep study and I don't have sleep apnea.

Where's Jim? De-Nile?

ChicagoGranny,

You're being overly harsh on Yub Yub in my opinion. In context, Yub Yub's full quote reads:

Yub Yub wrote:I still think it at times maybe they screwed up the sleep study and I don't have sleep apnea. But there have been a few times in the last month on treatment I've felt a little better. Keep your head up and get on your cpap ASAP. You'll probably start seeing improvements within the first few months. (emphasis added)

Those last three sentences are evidence that Yub Yub values his CPAP and intends on continuing to work on making CPAP work. Moreover, these last three sentences are also Yub Yub's way of encouraging the OP to get past the OP's denial and get started on therapy.

Many times sleep apnea is more about the physical structure of your jaw and throat then about the fat %. Only about 50% of overweight people can resolve their apnea by losing weight, for the other 50% sleep apnea was the cause of their obesity - this number comes from weight loss surgery stats.

If you need to find a cause then blame your ancestors who decided that farming was a great way to live because there was a transition in jaw structure at that time.

I was also skinny at the time my sleep apnea kicked in.

Trust your cpap machine. There are very few side effects and for me it made a world of difference in my life. However it is not an instant change, it takes a while to heal the damage done. Like if you decide to run a marathon, buying a set of running shoes does not mean you can do it, you need to train and get your body built up to do it.

I would suggest finding a competent sleep medicine physician and starting CPAP/APAP therapy, as has been echoed above. Ones fitness level has little correlation with sleep apnea for the majority of people. There are people that have it made worse by carrying extra weight, and some people can even get off of CPAP therapy if the main antagonist for their sleep apnea is weight related, but they are by far in the minority of cases.

Also, see an endocrinologist, the governing body for endocrinologists in American has established 300 ng/dL as the cut off for starting hormone replacement therapy, and you are way below that level. Just make sure to have the blood test done between 7 and 8 AM in the morning. If you do it any later in the day you can get a false positive because levels are highest in the early AM and are what is used diagnostically to establish hypogonadism.

However, I would suggest investigating everything else before starting hormone replacement therapy, if that is recommended for you by a competent endocrinologist, since a high RBC count is contraindicated for hormone replacement therapy since it tends to increase the number of circulating RBCs even more, which can be a risk factor for several vascular syndromes, some of them quite serious. Is everything is investigated but your RBC count remains high there is a good chance if you do have hypogonadism that you could do hormone replacement therapy safely since your other risk factors for vascular events at your age and fitness level are very low.

First of all, I'm sorry to hear about your health issues. And while I'm glad that the diagnosis of sleep apnea would appear to be the major or even sole culprit ("glad" in the sense that sleep apnea is a very treatable problem), I also deeply sympathize with your sense of shock and dismay. Nobody at any age likes having health problems; the first time you encounter a substantial problem can be trying; and for many of us the idea of having to hook up to some kind of strange hose apparatus to do what most people do naturally -- and to have to do so till we die -- is challenging, to say the least. Everybody handles the feelings and frustrations that can come up very differently. My own two cents would be to remember to let yourself feel whatever arises (resistance and denial and beating yourself up for it can sometimes lead to only more suffering), and to remember to bring compassion to yourself as much as you would to anyone you really care about.

Many of your symptoms do sound like they're caused by sleep apnea. My doctor told me that it is very undiagnosed, and they are discovering that it does not just belong to overweight middle aged males as thought years ago -- one of his patients was a slight, 100 pound woman. xPAP can require some adjustment and is far from easy for many of us, but it is very, very doable if you stick with it with the right attitude. I'd very much suggest looking at the "success stories" post on this site to give you a sense of the wide range of experiences of those who have really benefited from it. I read through all of them to help me, and I'm happy to say that after some tough adjustment, I now use my cpap equipment with a deep sense of gratitude and enjoyment.

I was diagnosed with moderate sleep apnea. I think I'd probably been symptomatic for maybe 5 years or so, and the symptoms started getting much worse in the months before the diagnosis -- tiredness, lots of naps, some morning headaches, etc. I was lucky to have "caught" the diagnosis before any really bad effects had set in, though. It sounds like the seemingly-sudden intensifying of your symptoms is similar.

Now, for the most part and on most nights, I sleep really well. I actually dream again, since I now have REM sleep. I wake up a bit groggy at times because I'm actually coming out of deeper sleep, rather than just skimming the surface. I have more energy; don't have to nap anymore; and notice that my body "aches" repair better and I have fewer of them. (Yeah, you actually have to be asleep in order for sleep to do you good. And sleep does you good). It's made a big difference, and I can only imagine the health issues I'm preventing by using the CPAP on a regular basis.

I've been lucky inasmuch as I've only had to contend with apnea, and not other sleep issues or health problems that affect sleep issues. Everyone has a different experience, of course.

Although my experience in getting used to the equipment and finding a good mask setup was luckier than many, it was still not easy. In fact, initially I hated the equipment; felt awful wearing it; and felt sorry for myself every time I had to put it on, wear it, or take it off. There were also a lot of adjustments with pressure, finding the right type of mask and then right mask, etc. And there were lots of emotional issues to wade through for me: accepting the diagnosis, accepting something that would require me to wear equipment for the rest of my life in order to do the simple act of sleeping, etc. It was a bear.

But I stuck with it, and along the way in adjusting and coming to be really greatful for CPAP I learned (or remembered) a few things about life/living that have been helpful. In no particular order:

1) "It doesn't have to be perfect." That applies to life, as well as CPAP. Even now there are a few times when the mask slips or there's a leak or some kind of adjustment needs to be made in the middle of the night. Some mornings my face wakes up with more pressure marks or a.m. wrinkles than others. But when is sleep ever perfect, or perfect permanently? Even before apnea I'd find myself waking up occasionally for whatever reason. For me, learning/re-learning to accept that "it doesn't have to be perfect" helps me simply make the mask adjustment I need before falling back to sleep. I don't need to get caught up in the experience of waking up, or catastrophize it or make it all about apnea or the mask or whatever. That also helps me let go of the temptation to keep expecting perfection from cpap, or to chase perfect "numbers" from analyzing the machine's data.

2) "You can adjust to a lot more than you think you can." I'm no Marine or tough guy. I don't like pain or aggravation, and I've managed to stress over the years about what in reality has been a very blessed and fortunate life. That said, there's some real truth to how resilient the human spirit can be. At some level, if you let it happen, you can adjust to more than you think you can. Living organisms are programmed to do that, even as they are also programmed to dislike change. Yeah, when you first put the mask on, it's uncomfortable and it sucks and you don't sleep well. And ditto for the second and the third night and so on. But I am amazed out how comfortable it has become for me now. Mostly just by letting it happen. I'm amazed at how my body has come to accept wearing the mask; at times I find myself checking to make sure it's still on.

3) "Attitude is huge." I cursed the equipment and myself for being "weak" at needing it. And everything in between. And then at some level I came to realize that how I chose to look at it was huge. It's wonderful to have a diagnosis for a harmful condition, as opposed to not. It's wonderful to have equipment that actually makes the symptoms go away, and that doesn't require surgery that might or might not work. It's wonderful to be the beneficiary of countless others who had to invent cpap, use cpap, and adjust cpap over the years until the machines today are so much better than the ones before. It's wondeful to be able to do something positive for yourself that affects a third of your life. Think about it -- by working through and adapting to cpap, you are automatically improving a third of your life! And that third, in improving your sleep, greatly benefits the other two thirds. The mask isn't any different than when I first put it on -- my relationship to it is.

Hang in there. Don't hesitate to come back to this forum for more input and support and ideas and tips. And remember -- with the right attitude and persistence, you will get through all of this and can come out to a much better side. (Don't forget, too, that sleep disorders sap your resilience, so that can only increase the resistance and sense of struggle, at least in the short term). Best wishes, and good luck!