Titration - Horrible Experience

[Padron192664]

Didn't go well would be an understatement.

Story: Since the new year, I've had terrible brain fog, memory issues, fatigue, and sleep maintenance insomnia. I wake up about 4 to 5 hours after I go to sleep for no reason, well the reason maybe UARS (I have no issues initiating sleep). Tried Ambien, didn’t work, still woke up. Tried Sonata when I awoke early to try to get me back to sleep. Didn't work. Tried sleep hygiene, CBT, sleep restriction but they have absolutely no effect on me staying asleep.

Had a sleep study done in March. 1 central apnea and 1 hyponea during the 5 hrs that I was asleep but about 50 arousals, spontaneous and respiratory related. Sleep center recommended sleep hygiene and visiting ENT and that was about it. ENT did his exam and based on that and my symptoms, thought that I might have UARS.

Went to a sleep center on Long Island for a 2nd opinion. Doc also thought that I had UARS based on initial study and symptoms and he scheduled me for a CPAP titration. Waited a while for the titration, almost 2 months, but it felt like an eternity. Looking back this might have added to the problem I had the night of the titration since I was sooo anxious, waiting for the test and hoping to get it done with so that I could start some kind of treatment for my condition.

Got to the titration around 7pm, they wired me up almost as soon as I got there, and I sat reading for the the next 4 hours, completely wired up with the terminal box hung around my neck. Told me that lights out were at 11pm and that they would come in and fit me for with a mask. This was the first problem since I usually get sleepy and go to bed at midnight.

When I was fitted and told to go to sleep, I wasn’t really tired yet so I laid there with the mask on. Mask was I think in my home environment I will be much more comfortable but realize that it will take time to get used tfitted at low pressure, I think 4 or wherever they started the titration at. It felt very loose but it was my first time ever wearing one so who knows. I didn’t like the first nasal mask, it was a Resmed Mirage Softgel. It seemed hot, and I had sweating under the mask on the upper lip area and heavy on the face. Bottom of mask also felt like it was drooping over upper lip. Called the sleep tech in around midnight, she changed to a different nasal mask, the FP Flex Fit. Second mask was a lot lighter on face and was again fit very loosely, almost like it was falling off. Didn’t seem to leak but was again at a low pressure, so who knows. The FP mask also seemed louder on exhale than the first one though. They said that they don’t use nasal pillows at the titration since they could be useless if titrating pressure gets too high. Took a sleeping pill and fell asleep but only for 30 to 45 minutes. I was awoken by door opening and sleep tech coming in to replace a wire and change masks since she said that it was leaking. Couldn’t get back to sleep after that for the rest of the night. 45 minutes, at most, of sleep data.

I didn’t feel comfortable all night long, starting with being made to go to bed at a certain time. Room was too hot and I was right outside the sleep tech office so I kept hearing the door open and close. Room to hot for my liking. Pillows and bed weren’t very comfortable. Wires and hoses all over the bed. Using a mask to sleep was a different experience and I kept focusing on it all night no matter how hard I tried not to, especially the exhalation noise of the mask and whatever exhalation relief program the machine used was distracting. I thought I would no problem sleeping with a mask on, don’t believe that I have claustrophobia issues but boy was I wrong thinking it would be easy sleeping with that thing on your face. Basically it was a wasted study, laying there for about 6 hrs.

Talked to sleep doc at center and he still has to score the little data I had, another 2.5 weeks of waiting for that. He said typically I wouldn’t be brought back to the lab to be titrated and would be given an APAP machine and we would use that to find the right pressure. I think in my home environment I will be much more comfortable but realize that it will take time to get used to the mask (will probably try nasal pillows since they seem the least intrusive) and being able to adjust it to eliminate problems.

Was wondering if anyone else has had similar experiences on the first night of titration but were still successful in overall treatment?

Sorry I just realized how long I went on for!!!!

[cowlypso]

Try not to worry about it. I know it's horribly frustrating when feel like you didn't "perform" at the sleep center by sleeping well. I had some of the same problems as you with my titration study... Right outside the tech room so I kept waking up with them talking and laughing, and the room was too hot. Fortunately for me the lab I went to does use nasal pillows, because there's no way I would have been able to sleep with a nasal mask. She had me try one on before I went to bed, and the air blowing on my nose was really annoying.

They can definitely use the APAP to do your titration in your own home. They'll probably have you use it for a week or two and then look at the data. There's no reason you can't use nasal pillows, even at the higher pressures. They are tested up to 20, which is as high as a CPAP machine will go.

Regarding getting used to the mask.... Once you get your mask and machine home, you'll want to spend some time while you are awake wearing it with the machine turned on. Just hook yourself up and turn it on while you are watching tv, reading, etc. That gives you a chance to get used to it when you aren't focusing on sleeping. It will help a lot.

I didn't have quite as rough a night as you did during my titration study. I slept about 4.5 hours, but it was still incredibly frustrating to be lying there awake. They moved the pressure up from 5 to 8, but then ran out of time because I didn't sleep long enough (and kept waking up). But my doctor has been monitoring my progress at home and has raised my pressure once, which helped a lot. Remember that they can change your settings without you having to go in for another study.

The big thing is to be sure that, when you do finally get your own CPAP machine, that it is fully data-capable. If you get a good machine that records all of the efficacy data, then your doctor will be able to monitor your treatment and make changes when needed. It's a lot harder to do if you get stuck with a machine that only measures your usage (compliance).

If you ever have to go in for another sleep study, be more proactive. Once you know your mask preference, make sure you find a sleep lab that will let you use that mask at your study. If the room is too hot, ask them to fix it (most sleep labs have individual climate controls in each room, or can at least turn on a fan).

[Pugsy]

Was wondering if anyone else has had similar experiences on the first night of titration but were still successful in overall treatment?

I had a little more "sleep" during titration but not by much. I did force tech to use nasal pillows despite his squawking about them after wasting 2 hours with some sort of over the nose mask. Otherwise I doubt if I would have slept at all. Felt like death warmed over the next day. Blood pressure was off the charts and had massive headache.

No surprise that they didn't get pressure quite right. I am worse in REM and had 8 minutes of REM sleep..

You can succeed at home despite having a bad titration study. It took me a 2 to 3 weeks after I got the software to get things dialed in but after that things worked well. It will take a bit of work on your part but you will get where you understand it all and be able to manage things quite well. There will be some bumps but with help and education nothing that can't be managed.

[M.D.Hosehead]

I had a bad experience, too. I slept very little and the resulting titration was much higher than my physiologic need. If I hadn't had a data capable auto machine and the support of this board, I would not have been successful.

[louspeachy]

I had my first full sleep study in 2008. I couldn't sleep so they gave me a sleeping pill. I had a titration study done a couple of weeks ago at the same place. I went in expecting to be able to get something to help me sleep but they said they no longer do that. I think KNOWING you HAVE TO sleep is the most horrible feeling. I was so worried I wouldn't be able to.

The rooms at the place are almost like a hotel. The bed was a full size and had a mattress on it that had a DOWN pillowtop! It was comfortable but I was unable to get enough "traction" with all the wires to get into position to sleep on my side which is how I normally sleep. The bed was very soft.The room was very relaxing looking and it even had a ceiling fan if I needed it. The room did NOT look "medical" at all.

The sleep tech tested my connections remotely before I tried to fall asleep. We had already picked out a mask that I said seemed very comfortable and it was (other than the fact that I think I maybe should have gotten a large instead of a medium but I make the medium work). The tech did not enter the room again after I crawled into bed except when I had to go the the bathroom and I needed disconnecting (about 3 times).

Both times I had a very nice experience. The tech at the most recent study was kind, compassionate and friendly. I almost went to another clinic for the study but the when I saw the rooms where they did the studies, I decided not to have it done there. The rooms were used for neurological exams during the day and sleep studies at night. They did NOT look like hotel rooms but doctor's examing rooms. Atmosphere has a lot to do with it.

Sorry you had such a negative experience.

Louise

[archangle]

To anyone considering a sleep study, squawk and get what you need beforehand.

Get your doctor to prescribe some sleeping pills for you to use in case you can't sleep. I really think every doctor who orders a sleep test should do this, even if they tell the patient to only do it if they can't sleep otherwise.

I couldn't sleep on my first test because:

1) I almost always sleep in a recliner because of my back and I'm used to it.
2) I sometimes sleep in the bed, but on my side. I was being a "good little patient" and trying to sleep on my back because of the wires.
3) The started the blasted test at 8 PM. I can almost never get to sleep before midnight even at home.

I've since found that some clinics do have recliners to sleep in. Sometimes you can sleep on your side despite the wires and gear.

Unfortunately, I don't know if there are any "choose your start time" clinics. I guess I can understand that, but geez guys, 8 PM!!! You want someone to go into an unfamiliar environment at an early hour, hook up to all that equipment, and then sleep "normally?"

There's a lot to be said for the idea of a home test, at least for screening. I do realize the big advantages of a real in-lab test, but great equipment doesn't do much good if the patient doesn't sleep.

[StevenXXXX]

I almost always sleep in a recliner because of my back

What happens if you sleep in a bed instead of in a recliner?
Why is the bed worse than the recliner?

[archangle]

I almost always sleep in a recliner because of my back

What happens if you sleep in a bed instead of in a recliner?

My back hurts.

[Elsh]

My experience was horrible as well. I did not sleep at all, so they just assumed I need the lowest pressure possible. I will be discussing this with the sleep specialist I'll be seeing in a few weeks, as it doesn't seem like they would know at all what I needed. I hope you have success with your treatment!