Diagnosis Carousel.

[elperroguapo]

I imagine this is the type of noobie question that surfaces often, but I've looked through some recent posts and haven't seen it quite asked this way. So here goes.

I'm a 38 year old man in decent shape but have been feeling like garbage for nearly 5-7 years now. By "garbage" I mean exceptionally fatigued, tired, with dizziness, blurry vision, depression, cognitive problems, and bad headaches. It has had negative impacts on both my personal and professional life. Initially, wanting to be proactive about the problem, I went to a few doctors who all diagnosed me with chronic depression (the family history is there) and over the course of 3-4 years, I was prescribed and given a suite of various anti-depressants ect. that only served to trend the problem I had (which was bad enough) toward a really terrible place. The drugs did nothing but "crack me out" on top of what I felt was an underlying pathology. In the next few years I was diagnosed and unsuccessfully treated for chronic fatigue disorder and even spent some time in the Lyme Disease pipeline before I finally met with a neurologist who asked me if I snored. That was about two months ago and my subsequent sleep study revealed that I was having about 45 apnea events per hour, which seems (looking at some other posts) to be in the severe category with the recognition that some have it even worse. I guess my question is coming from a place that is really disillusioned with the medical establishment at this point and am wondering if others took this meandering path to diagnosis. From your perspectives, are my symptoms consistent with my new diagnosis? I've been on CPAP therapy for a few weeks now and am struggling with it, though it seems as though this is fairly common. I've filled out a profile with my equipment though it occurs to me I know nothing about my software, which would seem to be an important component of the process. Thanks for your replies!

ELP

[Wonderbeastlett]

I was just diagnosed and have been on cpap therapy for 3 weeks! I had similar symptoms such as constant fatigue, headaches, fogged head/not thinking clearly, nightmares, sleep paralysis and down in the dumps type feelings. Although I've never had depression, your symptoms sound about right to me. There's a lot of knowledgeable people here who will help you!

I did have a bit of a run around when being diagnosed. They first called to say I didn't have OSA because my numbers were so low. Then about a week later they had a second and then a third doctor go over my results. I do in fact have OSA although it's mild my symptoms were very strong. Your sleep results don't lie so try out your therapy and see how you feel. Ask questions because as I said before there are much more knowledgeable people here than I.

[ChicagoGranny]

I guess my question is coming from a place that is really disillusioned with the medical establishment at this point and am wondering if others took this meandering path to diagnosis.

Yes, absolutely! The medical profession has had a huge blind spot when it comes to sleep-disordered breathing and sleep problems in general.

They are very quick to diagnose depression and anxiety, give you some pills and send you on your miserable way. Follow up steps are trying drug after drug and sending you to a mental health counselor who says you did not finish grieving for 35 years over your puppy that died when you were eight years old.

all diagnosed me with chronic depression (the family history is there)

haha Your family history might be sleep apnea misdiagnosed as chronic depression. !!!!

The good news for you is that a good CPAP therapy might well rid you of all the symptoms and give you a high vitality mentally, physically, socially and career wise.

Yes the software can be a critical tool. Use the forum to put it to work for yourself.

Good luck!

[DiverCTHunter]

I already knew I had apnea (roommates in college would throw shoes at me when I stopped breathing), but I thought it was from abnormally large tonsils. PCP referred me to the sleep center because my insurance won't cover tonsils in adults unless you either have 6+ infections/year or fail both CPAP and BiPAP.

[chunkyfrog]

Unfortunately, your experience is not uncommon with OSA sufferers.
Your symptoms are in line with what too many of us have experienced prior to getting "on the hose"
Although it has been expressed from time to time the suspicion that OSA is being over-diagnosed;
I'm afraid the opposite is much more likely--and it is so EASY to write a drug RX.
Unless the correct questions are asked by medical personnel,
apnea may only be considered if the patient complains of the right combination of symptoms
--and the doctor is is the right frame of mind, and not influenced by preconceived notions.
Some patients have brought a video or audio recording of apnea events, filled out apnea questionnaires,
or written lists of symptoms. A few have had to change doctors!
I never thought to mention all my relevant symptoms in the same paragraph.
-- What do you call the guy who graduated from medical school just barely passing?---Doctor!

[Pugsy]

Check out my signature line and the lower left of my post here for information on software that will work with your machine.
SleepyHead is the easiest to manage but if you want to try Encore send me a private message. I suggest you take the time to read all links as there is a lot of information to be had.

Welcome to the forum and yes your symptoms go along with the OSA diagnosis and yes it is common for the diagnosis to be missed. I spent 3 years with a diagnosis of anxiety/depression and menopausal BS before someone was smart enough to ask me if I snored.

Get the software and learn what all it means. Figure out if your therapy is at least optimal on paper with nothing screaming "fix me so you will feel better" and then if you still are having problems seeing any improvement we can then address any potential issues at that time. There is so much more to getting restful restorative sleep than just putting the mask on. Wish it were that easy but unfortunately often it isn't. Been down that road myself. Those people who have the overnight miracles....those people are in the minority and very lucky.

[elperroguapo]

Thanks for the feedback all. I'm just starting to educate myself to get in a position to treat this successfully. I guess the good news is that this is the first diagnosis I've had that actually had tangible data to support it (the sleep study). All the others were more or less based on "professional opinions," and each specialist naturally supported a diagnosis from his/her own field. Having this resource to help me along the way is a big help!

ELP

[gertrude]

I've been on CPAP therapy for a few weeks now and am struggling with it, though it seems as though this is fairly common.
ELP

I'm writing to say welcome and hang in there. It can be a struggle and requires patience. I'm coming up on the 4 month mark and finally feeling better, but when I was at your stage of a few weeks I could never have imagined that I'd be able to say that. Initially, I felt MUCH worse on the therapy than before it. But that has gradually lifted and, with the help of the kind folks on this forum, I am adapting to the practical aspects of using the mask and hose. (Hanging the hose over the headboard was a real step forward for me -- much less waking from moving in my sleep.) I've also learned a lot about why this is important, and that's providing motivation. Keep asking questions!

[Sloop]

From your perspectives, are my symptoms consistent with my new diagnosis?

In a nutshell -- YES

I am just amazed some of your doctors did't hit on this a long time ago. Man was I ever fortunate to have the Family doc I had 20 years ago. Not too many GPs were up on OSA at the time.

[kaiasgram]

I love the Subject heading of your thread!

Yes, the story of your diagnostic journey is, sadly, pretty common. Especially if you don't fit the high risk profile: middle-aged overweight male with large neck circumfernce and snoring. I had none of those risk factors. I ended up diagnosing myself after over half a year of being at my primary's office almost every week and undergoing a battery of specialty tests and also getting misdiagnosed for almost a year. During that time I even mentioned to at least two of the doctors that I sometimes wake up gasping for air as if I'd forgotten to breathe. Still, nothing. Until I dragged myself into my primary's office in May of this year and said, "Should't we rule out sleep apnea." She was skeptical but ordered the test. It got ruled IN. Moderate-to-severe.

But now you are on your way. Just know that some people are super lucky and take to cpap quickly while for others it can be a longer adjustment. I don't know if there's a correlation between severity at diagnosis (or length of time with apnea prior to diagnosis and starting therapy) and length of time to achieve improvement of symptoms, but it seems like there would be. Hang in there and know you've found the best place to get help and information and when you need it, support and some empathy.

[themonk]

elperroguapo, yep, you are not alone. I am your same age, overall very fit and healthy but never felt quite "right". My little journey started 2 1/2 years ago w/ a passing reference to insomnia to my doc during a checkup and a prescription for ambien. I asked at that time if I could get a sleep study because my sleep was really horrible. He told me that sleep studies were generally for people with apnea and since surely I didn't have it, there was no need.

Fast forward a year. I started to develop fairly crushing anxiety which caused some serious digestive problems. After far too many exams in very personal areas, including a colonoscopy, they racked it up to stress since they could find nothing wrong with me. I spent pretty much the entire year feeling like I was carrying an extra person around and not thinking straight at all - including some seriously stupid brain misfires.

Fast forward to this year. I blamed my issues on ambien and decided to get off of it. I sought out a sleep clinic myself and went for a study. Turns out I had around 24 hypopneas/hr. Pretty much all of the pieces fell into place at that point. Hypopneas broke my sleep cycle, I didn't get enough REM and deep sleep, cortisol was released, stress increased, etc, etc. Rinse and repeat every night. Like you mentioned, it isn't a great diagnosis but i am thankful I didn't have the O2 drops that can cause really horrible damage. It could always be worse.

So here I am...two years+ after I first requested a study, finally with a diagnosis. I could have very likely avoided the past couple of years of barely scraping by mentally if I had pushed harder. There is so much primary doc don't know about this disorder. Still much work to be done to educate them of the sometimes subtle signs.

I am coming up on 4 weeks w/ the PAP machine and it has been a struggle. I honestly haven't felt the full benefits yet because I either can't sleep enough with it or remove it at various points during the night and the hypopneas return. But, I am determined since it is by far the most effective treatment that doesn't involve cutting a hole in my neck. It is just going to take time for me.

We are a team. All of us. We'll get through this supporting each other. Welcome aboard.

[brucifer]

ELP,

If you haven't done so already, one other thing in which you may want to be tested is for hypothyroidism. It's an easy enough test for your PCP to order. Your T4 and free T3 thyroid hormone levels are checked as well as your level of Vitamin D. Hypothyroidism is a fairly common autoimmune disorder that can crop up unexpectedly. Untreated diabetes can also bring on excessive fatigue, but you've probably been tested for that many times.

The bottom line is that you have to be your own best advocate. I hope your therapy ends up working for you. Good luck in your journey.

[Jay Aitchsee]

Welcome elperroguapo,

Here's something you and others might find interesting. Just one of many scholarly articles on the web which speak to the relationship between OSA and depression.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1181621/

Depression and Obstructive Sleep Apnea (OSA)

For over two decades clinical studies have been conducted which suggest the existence of a relationship between depression and Obstructive Sleep Apnea (OSA).

A little nugget I pulled out:

Clinically, this is of particular concern, as sedative antidepressants and adjunct treatments for depression may actually exacerbate OSA

Jay

[archangle]

That's absolutely classical apnea symptoms.

However, that doesn't mean that apnea is the cause, or that some of the problems are from apnea and some problems are from other causes.

Assuming CPAP works, watch out for the other extreme. There's a tendency for us apneacs and our doctors to blame everything on apnea and not look for the real cause.

[Xney]

Same thing happened to me. I didn't snore, not particularly overweight, young (~26 when it started), nobody said I stopped breathing, etc.

As an above poster said, you have absolutely classical sleep apnea symptoms, and I actually had all of those, too.

getting PAP therapy going at first can be very challenging, you may need to tweak things a lot and work with your DME a lot to get things dialed in. Don't get discouraged. It took me a long time to get nightly PAP, and it's still not working perfectly, but it's sooo much better than it was.

What I told myself is simply that it was all worth it to get better sleep and feel more awake - that helped.