Opinion on what to do next regarding sleep studies & diagnosis / similar stories?

[azone]

I'm at my wits end trying to get a real diagnosis for my sleep disorder. I will describe the history below and then where I'm at now. Maybe someone with similar experience can offer encouragement or share their story on what they did.

I've done (4) sleep studies in the a lab. The tests can be frustrating as heck. I hate the lab tests because I don't sleep.

- My first two test ~6 years ago. First night barely slept.. maybe an hour at most.. but was enough to have enough events for them to wake me up and bring me back the next night. Second night was the titration test. I Managed to kinda sorta sleep a hour or two enough for them to set the levels. I ended up with CPAP at some outrageous level.. I remember it was about the highest pressure the Respironics machine went. Starting wearing it for a few months and what do you know I 'still' stop breathing even with the things going crazy blowing air. It resulted in me waking up with my stomach full of air. The solution was for them to put me on BiPAP. I did a little better but 'still' stopped breathing. If anyone uses BiPAP and has this happen you know it's very easy to tell (for your significant other). The machine flatlines... you're not breathing so it's not anticipating your breaths. I still got a stomach full of air.

I go back to the doctors and they all roll their eyes pretty much. I'm skinny, I'm young, I must be fine. This brings us to the 3rd test. Another sleepless night. But guess what. "You don't have apnea. Horray!". "Well... maybe you do... some kinda sorta central apena but that's kind of a new field and there's no real diagnosis or treatment anyways." Say what? Ok so they tell me to stop using BiPAP and I do for about 2 years. Of course my wife is still waking me up at night because I'm not breathing, and I have numb arms and feet and tired all day with chest pains. But I'm relatively young, not overweight, and look good so I must be great! Apparently none of this means anything to any doctors. I'm being sarcastic if you can't tell.

- 4th test. A couple years later I'm still complaining of the same symptoms and my wife demands to go into doctor with me and demands another sleep test as she sleeps next to me every night. So I do test #4. I don't sleep at all. Literally I don't sleep. Complete wrong time for my sleep schedule, uncomfortable, too much noise (can hear everyone talking the whole 5 hours), etc. I was literally 'never' unconscious although their data says I did enter some beginning sleep for little spurts for a total of an hour or less (regardless that's BS I could have told them what they were talking about the entire night and the stuff around the room I was staring at the whole time). Actually I was still wide awake from the night before so didn't have to "awaken" .. I literally put my cloths back on and went back to work with that crap in my hair and all and finally went to sleep for real about 3 hours later around midday that next day.. They said congrats nothing to see here, you're all good... I question the resulsts and said I didn't sleep at all and the esteemed pulmonologist said I may have some sort of CSA but we didn't get any REM sleep and there's no treatment for CSA that happens during REM sleep anyways. But don't worry you're all good. Pat on the back. Goodbye.

Fast forward two more years (again). I'm worse than ever. Tired. Chest pains. Bad circulation to arms and legs. But I'm still sorta young, not overweight, look 'healthy', so my doctors will not acknowledge anything. EKG's & stress tests are always ok. I've had a couple different primary doctors and still have to use the 2nd pulmonologist from the last test. I don't want to change doctors because of insurance. They may think I'm a hypocondriac or something (not sure how they could as I've never even been to the dr. outside of normal physical which I even miss some years.). They basically tell me not to worry about it all. How the heck can I 'not worry about' it when I don't sleep correctly, I'm tired, have chest pains,and get numb arms and feet?

I'm a lot wiser now than when this whole thing started (I actually realize now I've had it my whole life since I was a tired kid with chest pains). I have enough 'data' on myself the past 30 years and I know beyond a shadow of a doubt I have a sleep disorder that is dangerous and effects my health. I'm trying to research on my own. I want to do an in-home sleep study but the doctor isn't interested and I don't think I can with the same insurance because I had one couple years go w/ a negative result. Can I pay for my own home sleep study? How would I do this? Has anyone gone outside their insurance and paid out of pocket to have one done by different dr's and sleep centers? Now that I have a son I've promised my wife I'd get a real diagnosis.

[retired_guy]

Hi AZ,

First of all there is treatment for CA's if that's what you're doing.

Lots of things change over time, and what was true before need not be true now. It sounds as if your main problem was getting any actual sleep during your tests. So address that with the sleep clinic and see what they can do to help. You can take something before hand although I'm not a big fan of that. But talk to them about it.

It does sound like somethings going on, and it may be as simple as too many RERA events that were not paid attention to before.

So discuss the concerns with the docs, and go from there.

[trish6hundred]

Hi azone,
WELCOME! to the forum.!
I'm sorry you have had such a rough time with sleep studies. I didn't sleep very well during my 2 sleep studies either.
I don't know why you couldn't pay for a home study.
If you aren't able to talk to the Dr. you are going to now, hopefully you can find another one you can talk to.
Hang in there for other suggestions and good luck with getting your problems straightened out.

[3porpoise]

Hi azone
I understand the challenge when you don't "look " like you should have sleep apnea.
For starters, I'd get complete copies(5-6 pages each) of each sleep study, (not just the summary) you had done. find out exactly how many AHI 's (apnea hypopnea index )cause kinda sorta maybe having central apnea doesn't quite cut it and if 2 sleep studies showed that or even one ,that may be enough to go to your family Dr for a prescription. There are therapists out there today who don't know there's treatment for central but they seem to start one out on cpap and one has to fail at it to move on to the next treatment.
good luck.
3

[Mosquitobait]

Azone, you keep seeing the same doctor who does nothing for you. Perhaps you should seek out a sleep doctor who specializes in neurology. Or at a University. Somewhere. Else.

[jolycu]

I don't know if the OP is still around here (doesn't look like it), but I'll post this in case someone else is searching. Supplier #10 on the the Supplier List at the top of every page has an at-home kit you can buy without a prescription. The equipment is the same that was used to diagnose my husband, but his was through a prescription ordered by his physician and through a different company. I don't know anything about Supplier #10 and have never purchased anything from them. I had been recently browsing their website when I read the OP's post and remembered seeing this.

[woozie38]

I'm at my wits end trying to get a real diagnosis for my sleep disorder. I actually realize now I've had it my whole life since I was a tired kid with chest pains. I will describe the history below and then where I'm at now. Maybe someone with similar experience can offer encouragement or share their story on what they did.

Hi Azone,
Without Writing a long epistle 'bout my experiences, let me say my story echos yours in many respects. I too think I've had this problem from an early age.
I believe a mistake made frequently by many doctors is to consider all respiratory problems coming under the heading of SDB (sleep disordered breathing) to be caused by OSA.
Which is certainly untrue in my case because night after night my Sleepyhead charts indicate no OSA, no CSA and a consistent AHI of <5. Yet I feel lousy & constantly tired. Like you, I've seen many doctors, sleep specialists, ENT's, & respiratory specialists. Other specialists include a Cranilal/Maxillomandibular surgeon. (consultation included special x-rays and scans) - nothing found. All docs have said the same, "You're under AHI 5, your SA is treated & you're good to go, Best of British luck!"
The ENT surgeon put a miniature camera into my upper airway via my nose & on the monitor I could see exactly what was happening. As I breathed out, the base of my tongue would move backwards restricting the air flow, but not blocking it.
Now here are my thoughts which I hope will help you, & raise your spirits a bit.
AHI is an index of the number of events one has per hour, & since this index is made up of the number of OSA events plus the number of hypopnea events, one can see that if there were no OA's then the Hyp's would be more severe. Also it doesn't account for the length of time of each event. Thus hypopnea events can & do last for as long as 30 minutes or more. In SH, these are easily seen by the plateau top of each AHI wave form.
It could therefore be the hypothetical case that one event lasting one hour would return an AHI of 1, however the effect on the patient would be devastating.
It is not unusual for me to have 3 or 4, 30min hyp's on the one night.
So I like you go untreated & the docs are left scratching their collective heads. Not much good to either of us.

WHAT THEN IS THE SOLUTION?
It obvious that the airway has to be kept open and xPAP has in most patients been effective, but there are some patients for whom PAP is not the whole solution, although it can form part of the solution.
Clearly some intervention in addition to PAP is indicated.
The options (in descending affordable order) are...
1. Robotic resection of the base of the tongue
1a.Maxillomandibular re-alignment (if more suitable for patient).
2. Mandibular advancement splint (MAS)
3. Mandibular advancement device (MAD)
4. Tongue stabilizing device (TSD)

#1. above will require the patient to have health insurance. It costs $5000 just to turn the machine on, and there's the possibility of unplanned contingencies that would push up the cost. Then there's the operation team & theater fees as well. Possible cost $10,000.

1a. Would be covered by Medicare I think with gap payment.
2. MAS Made, supplied & fitted by a dentists - possible cost $5,000
The rest are inexpensive. #3. being a cheap "Boil & bite" affair
#4. TSD less than $50.
Of the above, I believe the TSD is worth a trial and have ordered one from the US for $AU49. Will report after I have given it a fair trial.
Another diagnostic investigation suggested by my ENT is a "Sleep Endoscopy" in which the patient is induced to sleep & the miniature camera once again used to inspect the airway. This, I'm told can also be expensive and sometimes inconclusive.

In the end it would seem ourselves & this board are our best resources. The folk posting really have good advice & information we can all benefit from. Central apneas can be scored by a number of artifacts & thus unless confirmed by clear airway events, may not be of much significance. So keep scanning posts here & keep trying to find a solution. One thing I'm sure of is that every one is different & requires differing solutions. I sincerely hope you find yours. Good luck.
Sleepyhead Chart 27/04/16