How to through the titration

[ewdavis1603]

Several years ago I had a sleep study and was told that I have very mild sleep apnea, but they never explained which type or what the number, 8.3 I think, even meant. I never saw the sleep doctor just went in one night did the study, sleeping less than I think was even possible, and received a phone call a few days later. To be honest the thought of trying to sleep with something over my face was not appealing to say the least so I never wen in for the fitting etc. I had previous experiences with testing for respirators that did not go well including passing out during a respirator fit test for anxiety.

Fast forward to a couple of months ago I was sent for another sleep study at a different location. This time just all the wires etc. caused significant anxiety just laying in the bed. Trying to stay on my back all night as instructed just made things worse. I made it through by leaving the TV on all night and basically watching TV from a semi reclined position and dosing off and on. However, they claim that I did sleep enough for them to get results. Again mild sleep apnea. So this time I forced myself to go in for the titration. I repeatedly explained that I knew I would have problems with wearing something over my face and that laying on my back was a bit claustrophobic for me. And was told that it was all in my mind. Well duh like I did not already know that. I tried two masks just sitting while waiting for the techs to hook up the infernal wires etc. Both were small one went over the nose and the other just "pillows" into the nose. The first was intolerable as the tubing was small and seemed to require a lot of effort to breath. The second was bearable while I sat up and distracted myself with TV and my phone, but it was a strange feeling to consciously have to think about each breath. After ~ 20 min they hooked me up to the wires etc. and asked me to again lay on my back which again started to freak me out. When they connected the mask to the machine I struggled with trying to force the air out against the pressure. It was not physically hard just just seemed to require a very conscious thought about breathing. I made it a few min. before I had to take the mask off. I tried propping myself into a more upright position which I thought would help but again after a few min. I had to remove the mask. The next attempt was to sit in a straight back chair. I took a few min. to get everything situated and was ok until the moment the mask went on this time just a few seconds, a breath or two, was all I could take. The panic started to set in quicker and quicker after the mask went on. So I gave up and left.

I should point out that I still did not see an actual doctor just the techs that ran the place a night and still have not had anyone explain what the result meant, or in the last case even what they were, beyond the statement that I had sleep apnea and needed to come for a titration.

So my questions at this point are:

1. Do I even have a real problem with sleep apnea or is this just an effort to sell a service? I know many people swear by their CPAP machines even a few close relatives. But I am wondering if my experience with not actually seeing a doctor to review the results is typical. Also is all the reported success just a case of hearing the positive results not the negatives. I should say that I also have a few friends that say they also had a sleep apnea diagnosis, they made it past the titration, done the same night, as the test, but they never wear the CPAP as they indicate it makes it impossible for them to sleep.

2. How do I figure out what the results of the sleep test even mean? Is it common to never actually see a doctor? Is the experience of only hearing "you have mild sleep apnea" common or do most people get more information, follow-up, etc.?

3. Assuming that I do need a CPAP how on earth do I get past the titration test. I might be able to get used to it by just wearing the mask around the house for longer and longer periods of time and trying to sleep "normally" and without all those wires. However, it seems that I can not get a mask to try much less a machine to work with until AFTER I do the titration.

Any comments or suggestions welcome. I am really just looking for help and ideas.

[chunkyfrog]

You can die from anxiety, and avoiding cpap is one way how.
The results from your diagnostic test can certainly be accessed; another test is redundant.
Ask for an APAP, so you can self-titrate at home.

[Cardsfan]

Call the Sleep Center and tell them you want a copy of the sleep test results. Then the people on here can tell you what the results mean.

[Julie]

They asked you to back-sleep to get a 'worse case' scenario for their records, otherwise, it's best to not sleep that way as it provokes apneas (and snoring), so it will be interesting to see how you test (at home) with free software we can set you up with to see what goes on overnight and if you get a low reading or if you do need cpap, but you do need the right type of machine to use the software (most newer types will work), so let us know the full name (all wording on top) and after emptying any humidifier water you might have put in there, turn the machine over and look for e.g. a 'Ref" number (e.g. 560) or 'model' number and we'll let you know what to do from there.

[ewdavis1603]

>>>They asked you to back-sleep to get a 'worse case' scenario for their records, otherwise, it's best to not sleep that way as it provokes apneas (and snoring), so it will be interesting to see how you test (at home) with free software we can set you up with to see what goes on overnight and if you get a low reading or if you do need cpap, but you do need the right type of machine to use the software (most newer types will work), so let us know the full name (all wording on top) and after emptying any humidifier water you might have put in there, turn the machine over and look for e.g. a 'Ref" number (e.g. 560) or 'model' number and we'll let you know what to do from there. <<<

Julie:

Thanks for trying to help but the point is I do not have a machine, or mask, etc.

......

[Julie]

Hi, sorry, I tend to talk first etc. But you need to confront your doctor, get straight answers, a referral to either a pulmonologist or neurologist trained in sleep medicine, some definitive answers. We can't tell you anything based on what you wrote, not usefully, and I don't think others should guess either. There could also be other physical things going on (e.g. thyroid, hormonal stuff) that might affect how you feel, but without a solid work-up and results on paper, interpreted by a doctor, not much can go anywhere. Please see your doctor and don't try to self-diagnose based on notes from strangers on the net who've never even met you, let alone taken an actual medical history or looked at your results.

[ewdavis1603]

>>>interpreted by a doctor<<<<

Well I guess that is the rub. Neither time have I seen the sleep doctor. In fact in neither case when I was tested were they actually "sleep" doctors. One clinic was run by an ENT. And perhaps that is the biggest issue. I would expect to meet with the doctor to review test results and decide on a course of action. I wonder if what has happened to me, a test followed by a phone call with some very generic finding and instructions to come in for a CPAP titration all without actually meeting or talking to a doctor, are the norm?

[Julie]

Where is your regular GP in all of this? Or don't you have one?

[chunkyfrog]

The character Doctor Frank Burns on M.A.S.H. probably was based on a REAL doctor.
Many of us have known such an unqualified, but documented, person.
Have you any idea how many rich, dumb kids graduate medical school in SPITE of their ineptitude?
Money can indeed buy anything.

[palerider]

The character Doctor Frank Burns on M.A.S.H. probably was based on a REAL doctor.
Many of us have known such an unqualified, but documented, person.
Have you any idea how many rich, dumb kids graduate medical school in SPITE of their ineptitude?
Money can indeed buy anything.

when I was in high school, I had what ended up being diagnosed as a bit of arthritis where the ribs join the sternum.... the "doctor" that I saw came in, looked at the xrays that were up on the viewer, hmm'd to himself a bit, and started to pronounce sentence...

at which point I interrupted him and said "those aren't my xrays".

"what do you mean"

"welll, "doc" do you see up at the top of the film, where the shadow of the lower half of the womans boobs is showing????... you might notice that I'm a teenage boy, not a woman with large full breasts".

seems to have completely escaped his notice.

can't remember if his name was "Burns" or not, now...

[Bons]

Palerider,
I can top that one. I went to a urologist who started talking to me about my issues with chemotherapy for my cancer. Wouldn't believe me that I didn't have cancer until I pulled out my driver's license and told him to compare the name on it with the one on his chart.

[chunkyfrog]

I left one doctor's practice because he appeared to be getting senile.

[palerider]

Palerider,
I can top that one. I went to a urologist who started talking to me about my issues with chemotherapy for my cancer. Wouldn't believe me that I didn't have cancer until I pulled out my driver's license and told him to compare the name on it with the one on his chart.

yeah, at least when my malpractice suit in waiting squinted at the name on the xray, ... he realized my name wasn't Delores... I suppose, and went looking for my actual xrays.

[chunkyfrog]

Sorry; I did not mean to derail the thread.
The OP needs encouragement.
"Can't never did nothing." is so incredibly unhelpful, Goofproof.
"The Little Engine that Could" seems infantile, but the its truth has legs, useful for all ages.
Sports metaphors--"you never hit if you never swing" (whatever)
How about comparisons? "There is always somebody who succeeded in spite of worse circumstances."
(((The Chicken Soup series is a marketing success . . .)))
----Maybe connecting to whatever motivator moves YOU?

[ewdavis1603]

Ok I realize first that I left out a word in the subject of this post it should read:

"How to GET through the titration", as in if I can not stand to have the mask on how can I get "get used to it" in the space of a few min. Everything online that I read talks about wearing the mask during the day, and increasing your time wearing it over the course of a few weeks and then trying it while asleep. My question is:

How to I get a mask to do this with before I go in to try the titration again?

Is it possible to purchase JUST the mask and a short hose without a prescription? If so were do I go to do so? If not is it reasonable to expect a doctor to write a prescription for just a mask so that I can try to get used to it?

Someone asked "were is the GP in all this" or similar. So I will complete the story a bit.

Several years ago when I had the first test is was because members of my family were reporting they had the test and that using CPAP was helping them sleep better etc. While I did not have any particular problems my GP sent me to a cardiologist for a full work up, stress test with echo, MRI, blood test, and a sleep test. Everything came back normal except the sleep test. (I am overweight and have high blood pressure. After reviewing the results with the cardiologist we agreed that while I could get a CPAP losing weight would be another course of action. To be honest I have not lost the weight.

Fast forward to this August when I went in to my GP for an annual physical. He "heard" something when he listened to my heart and found something odd on the EKG. So he sent me to the cardiologist again. The cardiologist performed a better EKG and a few other tests and found that I was in AFIB. While I was in AFIB they were able to do an echo and did not find any issues with the structure so I am not in heart failure. But the question remained why did this happen. So while I took the anticlotting medication and waited the 4-6 weeks until I could be cardioverted (sp?) I did the sleep test again. Cardioversion worked and I am out of AFIB. But as noted above when I tried to do the titration so that I could use a CPAP for actual therapy I could not get past the claustrophobia. So I have seen a GP and a cardiologist but not an actual CPAP doctor, although as the titration was last Thursday I have not seen anyone since then. I did call the sleep center and will pickup the full results of the study on Monday.