About ready to go back on the Dope.

[John from Brookston]

Finally got rid of the rebound insomnia, and the Afrin rebound, but now I've got full-bore claustrophobia. I SO want this to work, but I can't get through the smothering sensation without drugs, evidently. I tried going back on ramp, but the sensation is that I'm not getting enough air. Without the ramp, I feel like I can't exhale.
I feel like the machine is forcing my breathing, and within about 2 minutes I'm starting to freak.

And I know this is ridiculous, because when I was on the Klonopin I had really pleasant mornings.
Different mask? Different drugs? Go back on the Klonopin? Some kind of Tantric meditation?

My pressure is 19/13, ramp is set at 9/6

[Stormynights]

Maybe you could try getting used to the mask and machine by using it setting in a recliner during the day.

[ringo728]

It's really tough I know!! I'm going through it too. It's been 2 weeks for me. I go from nasal mask to pillows. Back and forth. My primary doc has precribed low dose .25 Xanax to help me along this rough patch and it seems to take the edge off a bit and I can go 6 to 7 hours with only one potty break. I really think it takes time to adjust to a whole new sleep life but I consider the alternative and I don't like that either. My health was slowly deteriorating. Especially my blood pressure. May I suggest that you ask your RT or equipment provider to see if you have an exhalation adjustment. I do on my ResMed Auto S9 machine. I set it to 3 (most comfortable level for exhaling) from 1 (which was harder to exhale) and it really helped a lot. I don't know about your machine but it's worth a call. I am also a novice to this whole experience. Good luck!!

[Not Fade]

Some kind of Tantric meditation?

My pressure is 19/13, ramp is set at 9/6

I suggest you think about what happens when you fall asleep with CPAP (you indicate you have had pleasant mornings).

If you had pleasant mornings, then you must have breathed well while you were asleep. Correct?

So this is proof that the system works for you. What is blocking you is your mind. I like the idea of wearing the mask while you are sitting up during the day to help with overcoming the mental block.

When you do lie down to sleep think of the fact that the system does work for you. Then try to distract your mind by thinking of a very pleasant experience. I have a little Walter-Mitty-like fantasy that works for me.

Big fat guy who's diabetic and on HRT as well as having OSA (boy, I sure won the genetic rodeo, din't I?).

On a side note, I will say all of this might have little to nothing to do with genes. As I understand it, you could have inherited genes for a good airway. But things like shortened or no breastfeeding period, diet and nasal allergies could have caused underdevelopment of your airway which eventually led to sleep apnea.

Then untreated sleep apnea caused obesity, diabetes and various hormone problems.

Genes may have had no role in your problems.

But at this point that doesn't matter, so good luck in adapting to CPAP.

[Always tired]

Finally got rid of the rebound insomnia, and the Afrin rebound, but now I've got full-bore claustrophobia. I SO want this to work, but I can't get through the smothering sensation without drugs, evidently. I tried going back on ramp, but the sensation is that I'm not getting enough air. Without the ramp, I feel like I can't exhale.
I feel like the machine is forcing my breathing, and within about 2 minutes I'm starting to freak.

And I know this is ridiculous, because when I was on the Klonopin I had really pleasant mornings.
Different mask? Different drugs? Go back on the Klonopin? Some kind of Tantric meditation?

My pressure is 19/13, ramp is set at 9/6

John,
Couple of things
When I was on Klonopin I had no nighttime worries at all, but I didn't remember much of the day either. Have you stopped the benzo too quickly, as in going cold turkey?
I'm an APAP guy, and think a BiPap user needs to answer the sensation of forced breathing and not getting enough air. In my case bumping the pressure from 5-8 to 6.5-10 made all of the difference with the can't breathe feeling, but with your pressure doubt that is the cause.
I used the TrueBlue for almost a year and during the times when the claustrophobia would really hit I would go to the Mirage Quattro (Any FF mask would probably do) and the sensation of more space and the air blowing on my chin helped with the demons.
Yogic breathing with anxiety works wonderful for me, but not while the mask is on. Trying to control and have measured breathing on PAP seems to keep my mind squarely focused on the problem (breathing) instead of off it.
What kind of HRT are you on, T shots or gels? Any other meds, coffee, etc?
A T

[kteague]

...And I know this is ridiculous, because when I was on the Klonopin I had really pleasant mornings...

Was your time on Klonopin before or while on CPAP? Not to muddy the waters, but since Klonopin is sometimes effective on RLS and PLMD, is there any chance limb movements could be contributing to your symptoms since your were better on Klonopin? When my limb movements were really bad, at night I stayed in a state of agitation and could not tolerate having the mask on if I was awake. Wasn't the mask's fault or the therapy itself - I was simply too hypersensitive and even just the straps touching my head made me want to panic and snatch everything off. Maybe none of this will relate to you - just throwing it out there just in case.

[John from Brookston]

I really appreciate all this brainstorming.

I tell myself "Look, you've done this, you've gotten through the night and you actually enjoy it, so what's the damn malfunction?" and my "lizard brain" just goes "Gah! Gah! getitoff! getiitoff!". It's all in my head. I really do enjoy this, but only when I'm on drugs.
I started the Klonopin when I started PAP, about the 3rd night in, and my PCP gave me a one-time script for 30 pills. and when those ran out, it was cold turkey, thus the insomnia. Also caught a head cold at the same time and over-did the Afrin.
I spent my first weekend watching old sitcoms in the afternoon with the mask on to get used to it, then from there it was sleeping in the chair with it on, then back to sleeping horizontal (on my side, my back was killing me in that damn chair) and that was just fine. Fall asleep within 2 minutes, get up in 2 hours to P, then back to bed until the alarm or sleep time hit 8 hours.
I have my machine set up for max exhale relief, wish I could get some more out of it.
I'll ask my PCP about Xanax, as opposed to Klonopin again.
I'll try distracting myself to get my mind off the blower. Used to put the troubles of the day out of my head by closing my eyes and designing antenna systems. Haven't had to do that since the troubles of the day divorced me...
I have a Quattro, I can see if the increased volume around my face helps. Was thinking about buying a "Wisp" or a pillow mask. Or both. Hell, we all become mask collectors, don't we?
I take a weekly injection of testosterone, but I still don't have enough energy to go play golf. (no desire, either, but I've never had any desire to play golf). With diabetes, hypertension, low-grade depression (Dysthymia), cholesterol problems, and edema, I've got my own pharmacy at home.
Don't recall if anything was said about limb movement from my sleep study, but I don't think that's a factor because I'm awake and not moving.

Lots of great ideas to try, thanks everyone!

[jencat824]

John,

Another alternative drug is Amytriptline (I probably spelled that wrong), but I've been on it for around 20 yrs. I was on it prior to CPAP, but at around 25mg taken early evening it might take the edge off the anxiety & movement issues enough to enable you to sleep peacefully. Just a suggestion.

Jen

[Xney]

You could start your ramp a bit higher?

[John from Brookston]

You could start your ramp a bit higher?

Oh, that's right, I can adjust the ramp pressure without having to "jailbreak" into the "Forbidden Zone". I'll bump it up and see how that flies.

BTW, spent 2 hours watching TV with it on last night without any problems. But it was another Insomnia Night just the same...

John
We've had 3" of rain in the last 2 days.

[Papit]

. . . BTW, spent 2 hours watching TV with it on last night without any problems. . .

I think you're messing up your AHI, OA, HA, CA data because all the data the machine collects while you're awake is of no use BUT definitely impacts those calculated averaged hourly figures. I sometimes used to lay around in bed after awakening for a good hour or more just thinking with my cpap on and running. When I mentioned that to my doc, he got pissed because a good many of my graphed centrals occurred while I was awake. He said I was messing up his numbers. So I remove my mask as soon as I awaken and avoid using xpap until I'm ready to turn in and shut the lights.

[purple]

One would suspect that the lower pressure afforded by the Ramp at start time is not enough air for one to breathe. I believe that there is a misconception that the machine only stents the airway open. My experience is that after that, as I have a constricted airway the machine needs to provide enough air as I inhale to allow my lungs to inflate, else I feel like I am suffocating.

If you can afford it, or your insurance would do pay for it. A bi-level machine might be the easier way to go. I suspect that anyone whose pressure is above 12 might be a good fit for bi-level machine. A bi-level is different from exhalation relief that you now have.

A bi-level has a different pressure for inhale versus exhale, and mine is quite sensitive to what which of these my body is doing.

Perhaps I am not the best person to talk of this, because I do not have problems exhaling against pressure. Although, a bi-level is the solution for someone who has problems exhaling against pressure.

The problem with bi-level machines is that they are both expensive, and difficult to get insurance to pay for. Medicare requires that a person have a medical condition like MS or MD, or have failed xPAP, usually in a sleep study. Now the 20 percent co-pay effectively prevents me from even worrying about getting a bi-level machine on Medicare.

A trip to the sleep doc might help in that to get a bi-level machine from a legitimate source, you will need a prescription for one. Many here on the forum (including me) have positive results from our forum host, cpap.com. The less expensive places to purchase a used one would be from http://www.secondwindcpap.com/, or from Mcdover (on the forum). Beware of purchasing one from craigslist or the like, because, even if the person is not an outright scammer, they are likely to know very little about what they are selling.

[mayondair]

John, I use the same machine as you( I know I haven't changed my profile:) ) you say that without the ramp and with the flex at 3( max) you feel like your breathing is rushed. You may want to try a lower flex setting, it is a subtle thing, but it may feel like it matches your breathing pattern better. PR SYS goes about exhale relief differently than Resmed, it is more rounding of the pressure rather than the full drop like Resmed. One manufacturers way is not better than the other, they just go about it differently. FWIW I use 2, 3 does make me feel rushed. Kathy

[Sheffey]

I feel like the machine is forcing my breathing, and within about 2 minutes I'm starting to freak.

My pressure is 19/13, ramp is set at 9/6

Since your problem is tolerating the pressure, I would try straight CPAP at about 15 and see if you can relax and sleep with that. With your current settings you are getting a continuous upping and downing of the pressure - I am not sure how the bi-flex works but it sounds like it makes it even worse.

I can somewhat tolerate a pressure of 18 but I could not tolerate 10 with flex setting on - again it is very annoying to have the pressure continuously going up and down.

If you can tolerate straight CPAP at 15 but have too high of an AHI, then you can start gradually upping your straight CPAP pressure until the AHI is acceptable.

[John from Brookston]

I feel like the machine is forcing my breathing, and within about 2 minutes I'm starting to freak.

My pressure is 19/13, ramp is set at 9/6

Since your problem is tolerating the pressure, I would try straight CPAP at about 15 and see if you can relax and sleep with that. With your current settings you are getting a continuous upping and downing of the pressure - I am not sure how the bi-flex works but it sounds like it makes it even worse.

I can somewhat tolerate a pressure of 18 but I could not tolerate 10 with flex setting on - again it is very annoying to have the pressure continuously going up and down.

If you can tolerate straight CPAP at 15 but have too high of an AHI, then you can start gradually upping your straight CPAP pressure until the AHI is acceptable.

We tried "straight CPAP" when we did the sleep study and I absolutely could NOT tolerate it. For me, the claustrophobia has 2 triggers, one, if I think I'm not getting enough air, and two, if I'm having trouble getting rid of it. Same way when I rode motorcycles, I could not stand to ride a bike that did not have a windscreen and made me try to exhale against the 60 MPH onslaught of wind.

The BiPAP throttles back to the lower pressure when I exhale, it's a demand system.

But I'm going back on meds, so this discussion's pretty much run its course. Thanks, everyone for your input, you guys are the greatest!