Diagnosed OSA - Kind of...

Hey there =)

Im currently a little bit confused about the situation that I am facing and wanted to ask for some opinions. Im aware of the fact that the internet is no replacement for actually visiting a doctor but unfortunately I still have to wait more than two months for my appointment.

Im a 20yo male having problems with daily fatigue and exhaustion for over 5 years now with increasing severity over time, which also leads to memory-issues and other problems.

Since im also a diagnosed epileptic for around a decade (although not suffering any severe health problems except for the occasional seizure roughly once a year, always in the morning hours) my neurologist thought that it might be a good idea to have my sleep checked. Especially because I feel the worst after waking up; completely unrested and even slightly dazed.

The various interpretations of the results of the sleep laboratory are confusing me right now:

The specialist of the laboratory itself first told me that everything was fine, no signs of any sleep related problems. A few weeks later I received a letter from the exact same doctor advising me to visit a otorhinolaryngologist (what a word ) because the data indicated slight apneas while im sleeping on my back. He also asked me to conduct measures to prevent me from sleeping on my back for a few weeks and see if that makes me feel better (it didnt). But he also added that it is highly unlikely that this light form of OSA causes symptoms.

The opinion of the otorhinolaryngologist differed from that: In his view I am suffering a moderate form of OSA (caused by the inner form of my nose, which according to him was quite uncommon), which definitely should be treated with CPAP and if successfully treated with it could potentially be resolved completely with a surgery.

I am now waiting for another appointment with the first doc to discuss the whole situation and basically have no clue who is right.

I'd be really glad to read experiences from other people who suffered similar symptoms and didnt have distinct test results (which left no doubts) and/or doctors who were sceptical if OSA even was the cause of said symptoms.

Thank you very much and best regards

Chris

Get a copy of your sleep study report from the lab. You'll have to do it in writing, but then you can see what they saw. It's hard to know what "slight" means absent the numbers.

It strikes me as odd, though, that "slight" apnea only on your back would make an ENT think that you need CPAP contrary to the lab's recommendation.

Hey thanks for the reply!

I do have the apnea–hypopnea index from the report, not the rest though. But I think I wouldnt be able to properly judge the other values anyway.

With an AHI of 20/hr when lying on the back at least the internet agrees that it is a moderate form of OSA.

However, when lying on the side the AHI was only 1/hr, so I guess that is why the first doctor informed me that this is just a mild case of OSA.

Lying on the belly (which is the position im waking up in every morning now that I took measures that prevent me from sleeping on my back) was not allowed and thus not recorded in the laboratory.

Shouldnt I notice at least a small difference now that the position in which I am experiencing apneas is eliminated?

The AHI is an hourly average over the course of the night. Portions of the night may not be alarming while some are. Unfortunately averaging them out makes it appear you are fine all night. That would be like me, being a diabetic, saying I only ate 3 meals yesterday when in actuality I sat down and ate the equivalent of 3 meals in one sitting.

Please do get copies of your sleep reports. There should be a summary (1-2) pages plus a breakdown of the data (a few more pages). Please do get the complete report(s). There is SO much more to a sleep study than the AHI. So many people struggle when clues are readily available in their report. You'll be surprised how much you will begin to understand over time. For me, I was helped as much by seeing what the reports say didn't happen as from what did. For instance, before you consider side sleeping as a viable option, you need to know if you are worse during REM sleep, and if you reached REM during those seemingly harmless side sleeping times. See what I mean? You'll get more pointed suggestions rather than generalities if you consider YOUR specific situation rather than garden variety suggestions that may or may not apply to you. Good luck going forward.

Chris,
I am curious where (rough area) you live. The treatment guidelines you've received seem quite different from what I am used to.

With an AHI of 20 I am very surprised the sleep doctor didn't view that as worth treating, ESPECIALLY since you exhibit classic symptoms!

It's all well and good to coach someone to sleep on their side, but that's not always as easy to do as it seems.

I'm also curious what would motivate someone to have surgery if that person had already adopted to CPAP and found that treatment effective. Surgery ALWAYS carries risk. One risk would be that it could cause scar tissue and actually make it more difficult to treat with CPAP.

Posting your lab results is a great idea ... there's a lot of knowledge on the forum here. Generally, I agree that nothing replaces the in-person doctor visit, but you have to have that visit with a good doctor. I'm not sure that's the case here. The other thing you learn talking to people here is that NO ONE can be as good an advocate for you as a patient as you can be.

Hi - I suggest you read... though ignore the personal stuff (irrelevant to you).

viewtopic/t70205/-Mars-Given-OK-On-Posi ... rapy-.html

Thank you very much for your replies!

kteague wrote:The AHI is an hourly average over the course of the night. Portions of the night may not be alarming while some are. Unfortunately averaging them out makes it appear you are fine all night. That would be like me, being a diabetic, saying I only ate 3 meals yesterday when in actuality I sat down and ate the equivalent of 3 meals in one sitting.

Please do get copies of your sleep reports. There should be a summary (1-2) pages plus a breakdown of the data (a few more pages). Please do get the complete report(s). There is SO much more to a sleep study than the AHI. So many people struggle when clues are readily available in their report. You'll be surprised how much you will begin to understand over time. For me, I was helped as much by seeing what the reports say didn't happen as from what did. For instance, before you consider side sleeping as a viable option, you need to know if you are worse during REM sleep, and if you reached REM during those seemingly harmless side sleeping times. See what I mean? You'll get more pointed suggestions rather than generalities if you consider YOUR specific situation rather than garden variety suggestions that may or may not apply to you. Good luck going forward.

Youre right, with so many factors that are potentially important I should be in possession of all the available information. I will contact the sleep laboratory tomorrow and ask them to send me a copy of the report. Im supposed to make another appointment for a second sleep examination anyway.

khauser wrote:Chris,
I am curious where (rough area) you live. The treatment guidelines you've received seem quite different from what I am used to.

Im living in Germany so that is most likely the reason why
There are probably many more differences in this regard but I think that the general evaluation of disorders and its symptoms should be the same. (Well, hopefully!)

khauser wrote: I'm also curious what would motivate someone to have surgery if that person had already adopted to CPAP and found that treatment effective. Surgery ALWAYS carries risk. One risk would be that it could cause scar tissue and actually make it more difficult to treat with CPAP.

The whole conversation was quite "surgery-focused", which im my honest opinion seemed quite odd Especially considering the fact that I thought that my OSA wasnt anything major before talking to this doctor.

khauser wrote: Posting your lab results is a great idea ... there's a lot of knowledge on the forum here. Generally, I agree that nothing replaces the in-person doctor visit, but you have to have that visit with a good doctor. I'm not sure that's the case here. The other thing you learn talking to people here is that NO ONE can be as good an advocate for you as a patient as you can be.

I will try to get the results as soon as possible. Having them myself will be really helpful If I feel the need to consult another doctor as well.

Julie wrote:Hi - I suggest you read... though ignore the personal stuff (irrelevant to you).

Thank you for the link I will read it now

Hey Chris,
In retrospect I find it a little alarming that I could tell you were outside of the states like that. My understanding is that the state of medicine in Germany is quite sophisticated, but I could also guess that you're not getting treatment from the German medical institutes, and instead are perhaps in the armed forces.

At any rate, there is one global truth in the world: If you go to a surgeon with a problem, the solution will very often involve surgery even if there are less invasive therapies to try. If you go to a chiropractor they also tend to think they can solve most problems via their practice. The surprising part of this (to me) is the referral from the sleep doctor. In fact, from what I know of your case so far, I would suggest looking for a DIFFERENT sleep doctor! Is that an option?

Again thank you for your reply and advice!

khauser wrote:Hey Chris,
In retrospect I find it a little alarming that I could tell you were outside of the states like that. My understanding is that the state of medicine in Germany is quite sophisticated, but I could also guess that you're not getting treatment from the German medical institutes, and instead are perhaps in the armed forces.

Im not from the United States, I am a german citizen so I do get treatment from german medical institutes. I was under the impression that this was an international forum and didnt know that it focuses more on american citizens.
While there are german communities regarding apneas they have very few members which of course means that you receive less (diverse) opinions.
This is the reason why I asked for advice here. I am sorry for the missunderstanding

khauser wrote: At any rate, there is one global truth in the world: If you go to a surgeon with a problem, the solution will very often involve surgery even if there are less invasive therapies to try. If you go to a chiropractor they also tend to think they can solve most problems via their practice.
The surprising part of this (to me) is the referral from the sleep doctor. In fact, from what I know of your case so far, I would suggest looking for a DIFFERENT sleep doctor! Is that an option?

It is and im going to do that. There are fortunately quite a few sleep doctors and laboratories where I am living.
When it comes to surgery it is quite appealing to be able to sleep without the need of a special machine or in a certain position as long as the risk of failure isnt high. But before I have to think about this and make a decision it is necessary to find out if my tiredness even is a result of the OSA anyway.

Ive got another question though:
Does the severity of the OSA directly correlate with the severity of the symptoms? So will a person with severe OSA (judgement based on AHI) always feel worse than one with "only" a moderate form? While this suggests itself Im asking this question because kteague already pointed out that there are
a lot of different factors to take into account if you want to estimate how severe the apneas are for the well-being of a person. And to be honest I can barely imagine how horrible a person with more apneas per night than me (Ive read some people have more than twice as many if untreated) must feel

Greetings Chris

We have folks from all over the world on this forum who are very active and give and receive excellent advice. Many apnea patients, my husband included, had almost no events on his side during the study but AHI of 28(moderate) on his back. It's called positional apneas. Good luck and keep us posted.

@Kevin, I'm amazed that you guessed Chris was not in the States, you scare me!

Some people feel really all the time and have no energy with or without Cpap (though there's usually more to it after research is done), and others feel pretty good most of the time even if their numbers aren't great... and that's true of some even before they began treatment. Of course if you're awoken even slightly every night 100 times you're probably going to feel worse than if that were only 20 times... The thing to remember though, is that what you're prescribed, the pressure setting(s), doesn't particularly match up with 'severity' as the number of events doesn't tell you how much pressure is needed to keep your own airway open.

Thanks to both of you for the information!
Im glad to have found such a great community

What Im also interested in is the question if its usual for the apnea to get worse over time or at least for the exhaustion becoming extremely worse over the years.
Because if OSA truly is the cause of my symptoms it must have been there for years as I wrote in my initial post. But in the first years the tiredness wasnt too extreme and was rather an annoyance than (as currently) a problem.

What I found interesting though is that there apparently is some kind of interplay between epilepsy and OSA because apneas can play a big role regarding the frequency of seizures and at the same time are more common for epilepsy-patients.

Hi- well the first thing to remember is that we're all getting older, with or without Cpap and that will slow you down anyhow. If your treatment is ideal,I don't know that you'll otherwise get worse, though tissues do tend to become slacker as we get older and a bit more pressure could be needed in time. I saw that epilepsy link, but I'm not sure why you ask - do you have seizures? Are you on meds for them?

ApneaChris wrote:
What Im also interested in is the question if its usual for the apnea to get worse over time or at least for the exhaustion becoming extremely worse over the years.
Because if OSA truly is the cause of my symptoms it must have been there for years as I wrote in my initial post. But in the first years the tiredness wasnt too extreme and was rather an annoyance than (as currently) a problem.
.

I know when mine started - when I had my youngest (now 24) I started snoring badly. About 12 years ago my blood pressure became erratic then suddenly I was falling asleep on my keyboard. Each time the step down was after some sort of health issue - pregnancy, cold/flus, pneumonia and such. I knew I had sleep apnea because when I was doing massage I had several clients who had it who explained the whole thing to me and I recognized the sleep part however the tiredness didn't come until about 6 months before I got my machine after I had a bad bout of flu/bronchitis. Remember that being tired is only one of the symptoms but it is the one most people are familiar with. One should remember this comes on slowly and we learn coping mechanisms - like chewing food to stay awake. After I had the machine for a few months I was amazed at the difference in all sorts of little parts in my life besides being wake. Like better skin, mood change, reduction in anxiety, stabilizing my blood pressure, interest in my art work, clearer mental functioning.

Another thing to remember is not only AHI but the length of the event is important 20 events at 10 -15 seconds is different from 20 events of more then 30 seconds. I never heard what my AHI was but my oxygen level dropped to 56% at times and that was what my doctor focused on.

Again great responses, thank you

Julie wrote:Hi- well the first thing to remember is that we're all getting older, with or without Cpap and that will slow you down anyhow. If your treatment is ideal,I don't know that you'll otherwise get worse, though tissues do tend to become slacker as we get older and a bit more pressure could be needed in time. I saw that epilepsy link, but I'm not sure why you ask - do you have seizures? Are you on meds for them?

Ive been having seizures for about 10 years now but im having a rather mild form or lets say one that I can cope with very well: Im "only" suffering 1-2 Seizures a year and it just takes a day for me to completely recover.
I am on medication, which I know can have side-effects just like my symptoms (and many more). Changing the medication and even stop taking them alltogether for a few months were the first two things that I tried out.
As I feel the same with or without the medication I feel safe to say that this isnt the root of the problem.

And I mentioned this only because I was surprised to read that.
I also find it odd that it took the doctors so long to check if there is a problem with my sleep and only after i specifically asked them to.
Especially, since sleep has always been the number one factor which triggered my seizures (according to the docs). So far they all happened in the morning less than 30 minutes after waking up.

Im also still a little bit sceptical if my OSA even causes any symptoms because of the evaluation of the first doc and if there instead is another cause for my symptoms

BlackSpinner wrote: I know when mine started - when I had my youngest (now 24) I started snoring badly. About 12 years ago my blood pressure became erratic then suddenly I was falling asleep on my keyboard. Each time the step down was after some sort of health issue - pregnancy, cold/flus, pneumonia and such. I knew I had sleep apnea because when I was doing massage I had several clients who had it who explained the whole thing to me and I recognized the sleep part however the tiredness didn't come until about 6 months before I got my machine after I had a bad bout of flu/bronchitis. Remember that being tired is only one of the symptoms but it is the one most people are familiar with. One should remember this comes on slowly and we learn coping mechanisms - like chewing food to stay awake. After I had the machine for a few months I was amazed at the difference in all sorts of little parts in my life besides being wake. Like better skin, mood change, reduction in anxiety, stabilizing my blood pressure, interest in my art work, clearer mental functioning.

Another thing to remember is not only AHI but the length of the event is important 20 events at 10 -15 seconds is different from 20 events of more then 30 seconds. I never heard what my AHI was but my oxygen level dropped to 56% at times and that was what my doctor focused on.

There are probably a couple of things that are related to my tiredness, because I know that I didnt have these problems before:
Memory issues, more and more grammatical insecurities (even in my native language) and a really low stress tolerance. Furthermore Im having Jaw problems every morning after I wake up which is a result of pressing my teeth together while sleeping (also an indicator for stress).

And yet Im very sceptical: While I dont have the full report ive got a (very short) summary which states that my lowest oxygen level was 92% and that there was no REM intensification.
Something else I completely forgot to mention is that before visiting the sleep laboratory I had to make a test at home with a device that also monitors my sleep with completely different results: No snoring at all, only 8 apneas total and thus no signs of OSA
Oddly, my average oxygen level was with 91% lower than my lowest in the night in the sleep laboratory, where I actually had apneas. Instead I had a few episodes of relatively high heart frequencies in this first monitoring which couldnt be found in the laboratory. Yes, im confused