A panicky newbie

[Mnementh]

Hello all,

My name is Daniel, and I'm from Culpeper Virginia. For some years now, I've been quite tired during the day, regardless of whether I get a good night’s sleep or not. This is especially evident when I sit with little to concentrate on, or doing mundane tasks that don't occupy my attention completely. (Monitoring computer systems at work, driving long distances, etc.) In 1994 I was medically discharged from the Air Force for experiencing auditory hallucinations. These occurred (and still do, especially in times of stress) during the transition from being awake to being asleep, usually shortly after I lay down. The diagnosis from the Air Force was a Psychotic Disorder, Not otherwise specified. They tried various different anti-psychotics, but none of them helped aleve the symptoms. (I was amused that some of them had side affects including auditory hallucinations.) They were quite troubled that I always knew the noises I was hearing (typically they were voices that stated sentences that had nothing to do with anything connected to me,) were not really there. I never lost touch with reality. Nonetheless, I was medically discharged.

Entering back into the current timeline. I work as an automation technician for a semiconductor manufacturer. I was reported to my supervisor for sleeping at work. (I did not recall falling asleep on that day, but will admit to having fallen asleep other times and not gotten caught.) I wasn't punished, but was told if it happened again, "action" would have to be taken. In order to help myself, (and show initiative for getting it looked at before it's a real problem,) I went to see my family care physician. She referred me to Dr. Winter in Charlottesville, Virginia. After reviewing my medical history, he told me to forget what they told me in the Air Force about my condition. He described the hallucinations as Hypnagogic Hallucinations, which are typical of many sleeping disorders. (It was very helpful having a doctor who knows what he's talking about.) He recommended a sleep study, which I underwent on December 28th.

One of my issues (I've had it since childhood) is an extreme sensitivity to anything touching my nose. I can't even look at someone touching their own nose without looking away. (I have no idea why, it's just a quirk of mine.) While the electrodes didn't bother me, the sensor they had over my mouth and in each nostril (to measure when I am and am not breathing) made the sleep study torture. Out of the entire study, I only slept for 2 hours and 44 minutes. I'm surprised they got that much out of me, but I had not drunk any sodas or had any other caffeine that day, so I was quite tired. Halfway through, they tried to put me on a CPAP machine, since I already hit the required threshold of apneas. Having had the nose/mouth sensor had frustrated me immensely that night, and I was unable to have the mask on for any length of time. (He didn't even try the nasal mask, going right for one that covered the nose and mouth. We also tried a full face mask, but I still couldn't tolerate it.)

At my follow up appointment, I got the results. My AHI was 57.4, which he listed as severe. (From looking at the graph, it appears to me that I have hypopneas more than apneas, by far.) He scheduled me to go back for another night to be fitted for a BiPAP.

Knowing I had a problem with the mask the first time around, I tried very hard to keep myself calm.

I was first fitted with a mask early in the evening, before any electrodes were attached. I breathed with it for about 10 or 15 minutes without sleeping to try to get used to it. It was tolerable, but definitely something I would have to get used to. I didn't feel a panic attack at that point, and felt comfortable. I took it off until bedtime.

At 9:45, she came in and wired me up with the electrodes, and then the CPAP. We started with the BiPAP settings, which increased the pressure for me to inhale, and lowered it for me to exhale. While the pressure was good for me to inhale, and the pressure was good for me to exhale, there was a problem. Every time I inhaled, it felt like a valve was cutting me off before I was done inhaling. I was then presented a choice, where I could force it to let me inhale (it would let me, increasing the pressure till I was done) or just exhale at that point, but not feeling like I took a full breath. This was very distracting, and there was no way I was going to be able to fall asleep any time soon with that.

So, after consulting with the technician, she turned it over to CPAP. This was more comfortable at first, as I was able to breathe in as much as I wanted without struggling with the 'valve issue.' The problem, however, was there was no balance. The pressure to inhale felt like it was enough, but the pressure to exhale felt like it was too much to be comfortable. If she lowered the pressure to help me exhale, then the inhaling pressure didn't feel like it was enough.

I was getting tired at this point, and fell asleep for (it seemed to me) about an hour. At that point, something made me want to take the mask off in my sleep. (I believe it was an itch.) I was half awake when I started to take it off, and by the time I was fully awake, I already had it half off. At that point, I just took it off so I could get the itch. The technician came back in to help me put it back on, and that's when my main problem showed up.

They had increased the pressure while I was sleeping, (and I was doing well on that pressure, she told me) but it was too much pressure for me to exhale with while I was awake. As soon as the mask went back on, I felt like I was smothering, like you do if you're under a blanket reading as a kid, and you stay under till the air gets stale, but with no way to get fresh air. The machine was set to provide humidified and heated air, and I asked if she could turn off the heat for it. She did, and it felt better. I still had trouble exhaling against pressure, and I had a panic attack. (I started involuntarily breathing harder, almost hyperventilating, and my arms started shaking as I forced myself not to remove the mask.) I had to remove it, and tried to calm down. We tried it on BiPAP again, and I tried to tell the technician about the problem I had with the 'valve issue.' She understood what the problem was, but no setting on BiPAP that we tried fixed it. We went back to CPAP, and I had a panic attack again. This went on for a while, and every time I tried to put the mask on, I was getting more and more worked up, and I was shaking even without the mask on. At that point, the technician suggested that I take a break, and read my book or watch TV for a while. This, she said, might help take my mind off it and calm me down. I agreed, and read my book for a bit.

After a while, I was feeling calmer and was dozing off. She came over the intercom and asked if I'd like to try again. I said yes, and she came back in. We hooked me back up, and tried again, but I had a panic attack and had to remove it almost immediately.

At that point, recognizing that this was not working, the technician asked me if I wanted to continue, or stop with the CPAP. I said that while I hated to give up, this wasn't working. There was no way I was going back to sleep with the panic attacks. I inquired if there was a sleeping or anxiety medicine available to help, but was told they had no medicine there, and the doctor would have to prescribe it. I stayed on the electrodes to give them additional sleep data, and slept quite well without the mask.

If the doctor has enough data to prescribe a CPAP for me, I'd like to try at home. With the freedom to take it slow over multiple nights, I think I could get used to it. Taking an anti-anxiety or anti-panic attack medication would also be helpful during the acclimation stage.

I really hope to be able to get used to this, and hope that I can get over the panic attacks. They're not fun.

[jmelby]

Welcome! I had a panicky reaction when they first put the mask on me at my sleep study... I couldn't stand either type of nasal mask (neither the over the nose nor the nasal prong type) so went for a full face mask at first. Despite my initial reaction, I am happy to say that I am completely comfortable wearing a nasal mask all night every night--3 months later. It does take some time to get used to, and it sounds like with your particular sensitivities, you may want to ease yourself into it slowly--first by trying wearing it when you are awake for some time (watching tv or whatever). Try it each night, but don't beat yourself up if you can't make it through the night with it on.

I think you are on the right track by wanting to try this at home yourself--the sleep lab is a strange place with people watching you, so a comfortable setting will probably work out best.

As for the issues you have had exhaling and such, there are many options--most machines have a ramp feature where the pressure starts out lower. The ResMed I have also has an "EPR" feature that helps if you have problems exhaling--similar to a BiPap, but with a lower range. Other machines have similar features and you'll find a wealth of information about them on this forum and the wiki. You'll need to figure out what works best for you, but it sounds like you are committed to trying, which is great.

[mars]

Hi Daniel

Welcome to the Forum, it looks like your are going to face a few challenges in your treatment.

First of all, an AHi of 57 is quite severe, as are the symptoms (work etc) that you are describing. So your first action is to totally commit yourself to the treatment, with a determination to overcome all obstacles.

Forum members have, between them, had just about all the treatment problems that one can imagine. So the support you will need is here, as well as with your medical people.

Read all you can whilst you are waiting for your machine, and when you get it if you post the details in your profile it will help Forum members to assist you better.

You have lived through the panic attacks, so the evidence is that you will live through the next panic attack. If you get anxious about them, you will increase their effect.

When you get your mask you might want to wear it during the day to start to desenstise yourself you to it, and also use it with the machine going. Make sure you get a data capable machine, so you can monitor your treatment.

Good to have you on board

cheers

Mars

[kteague]

Hello and welcome. You may find that your sensitivities and anxieties improve once you get this treatment working for you consistently. Until then, it may take some help from medication. I just wouldn't take meds then not use the machine as some meds might make you more vulnerable to apnea events. You could try another time at the sleep center with medication. If your pressure needed is very high, you may need a bipap and have the timing between the inhale and exhale tweaked to suit your breathing. Keep in mind that while everything feels so intense and just plain WRONG right now, I'm guessing you'll not find things so odd after a while. Of all the quirks for an OSA sufferer to have, how unfortunate to have a nose sensitivity. What luck! I'm not that familiar with this, but do you think Cognitive Behavioral Therapy might help you deal with it? I don't envy you on this, and sure hope you persevere. Your career (and life) has been hindered enough and this is your chance to regain your life. Let us know how things progress.
Kathy

[SleepyGrant]

First off welcome. I just wanted to let you know that you should contact the Veterns Affairs Administration. Since your doctor said that the Air Force misdiagnosed you, you would be entitled to disability benefits from the VA. OSA carries a disability benefit of 50% and I believe that it pays app $1500.00 tax free and pays for all CPAP related items and care for the rest of your life. I am currently in the Navy and have recently been diagnosed with OSA and these are the benefits as they were explained to me. It should be worth your time to look into this and file an appeal on the Air Forces diagnosis. Good luck!!!

[Mnementh]

Thanks for the welcomes.

As to the nose sensitivity issue, I'm not sure when it started, but I've been that way all my life that I can remember. When I was a kid, it would manifest itself as a "buzz" in my nose (not an accurate description, but the only thing that comes close,) that would only go away if I gripped the bridge of my nose with my fingers. (I can touch my nose, but nothing else can.) This would keep me up entire nights on occasion. Fortunately, this has passed since childhood, but seems to have imparted a phobia in its wake.

As to informing the VA about the misdiagnosis, I'm definately a fan of letting sleeping dogs lie. I'm on 30% disability now, and don't really want to go through the potential re-testing and disability hearing that could result. I was never involuntarily commited, and all my rights are present (e.g. the right to purchase a handgun) so I don't think a potential 20% increase would be worth it. But I appreciate the suggestion, and I had considered it.

[Julie]

Hi, I'm not sure why no one has mentioned it, but there's a simple answer to your difficulty in exhaling while on Cpap. I can't speak for the other machine brands (though I'm aware there are excellent ones out there) but probably the widest used one, the Resmed M-Series (and the Pro model is better than the Plus) has a feature called C-flex (and/or Aflex) that deliberately makes exhaling much easier for people who have trouble with it. Many of us have the machine and use the feature (Aflex is similar, but I think it supposedly helps both in- and exhalation, and most people seem to get machines with it builit-in). This is not rocket science and I think you need to ask for a trial of a machine with C-flex (or better.. A-flex).

I said the Pro was the better model to have (vs the Plus) because it's set up with a smart card which, together with the correct reader and software, allows you to track your progress every day at home. The other one only gives compliance information to your MD who then passes it to the insurance co. who are otherwise not interested in your daily details and stats of course.

I think you've done fantastically well considering how dumbly treated you were in the service!

[ozij]

At 9:45, she came in and wired me up with the electrodes, and then the CPAP. We started with the BiPAP settings, which increased the pressure for me to inhale, and lowered it for me to exhale. While the pressure was good for me to inhale, and the pressure was good for me to exhale, there was a problem. Every time I inhaled, it felt like a valve was cutting me off before I was done inhaling. I was then presented a choice, where I could force it to let me inhale (it would let me, increasing the pressure till I was done) or just exhale at that point, but not feeling like I took a full breath. This was very distracting, and there was no way I was going to be able to fall asleep any time soon with that.

Welcome, Daniel.

I'm surprised they started right off with BIPAP, the don't usually do that. What you are describing happenes to me when I try a Respironics machine - their way of analysing the beginnig and end of my breathing misleads them. On the other hand, the response I get from a Resmed machine is much much better for me.

It's worth you while to find out which machine it was you found so intolerable, and to check if you can try another company's machine. While most machines are good for most people, for some us one machine responds much better that the other.

O.

[el_zorro]

Almost everyone has panic attacks in the sleep lab. When I had my titration study, I started out with nasal pillows. At first it seems that these would be less intrusive but after 1.5 hours I awoke and almost ripped them off. Having something directly under my nose cause some claustrophobia. The tech came in and I switched to a nasal mask and slept like a baby. I was on straight CPAP. The problem that you described with the pressure being too high after you awake and go back to sleep can be handled by ramp(start out with a lower pressure and gradually increase). The tech should have been able to restart the ramp for you. I'm not sure whether the sleep lab machine had CFLEX or EPR, mine didn't and I notice that these comfort features help a lot once you get your own machine.
The whole CPAP thing is a shock at first, but if you have a positive attitude (many of these things are mind over matter), you can adjust especially once you start seeing the benefits and feel better.
Hang in there, its a long road but your body needs help and you can give it the sleep it needs. It may take a while to find the machine and mask that work well for you.

[xiola]

Just want to start off saying, I love your name Those are some of the best books out there.

I'm fairly new to this too, and almost went into a full blown panic attack when i first started using my mask. I felt like I couldn't breathe, so i started breathing faster and shallower, next thing im hyperventilating, crying cause I'm upset for whatever reason, it was a bad scene.

What worked for me, and I certainly don't suggest this for everyone, was Ativan (anxiety meds). That got me past the initial feeling that I couldn't breathe.

and after that first night, it never happened again.

it DOES Get easier. promise and it's worth it. now, I look forward to going to bed with the mask, i find it comforting in a way.

[tattooyu]

Hey Mnementh, welcome!

At the time of my titration, I was having panic attacks daily due to the stress hormones that had built up in my body from years of suffocating in my sleep. When they first put the mask on -- BAM! -- panic attack! It took me a good 10-15 minutes to the point where I could keep the damn thing on. I only slept a little at mine as well.

Good news is that with CPAP, a little medication (as needed only) and cognitive therapy, my panic attacks are much, much better! I rarely, if ever, have what I call "full-blown" attacks any more. If I had to guess, I'd say I might have 1 panic attack a week... maybe. They are usually milder and I can sometimes get past them without my Klonopin.

With your nose sensitivity, I'm not sure which mask would be better. I would think nasal pillows would be better since you wouldn't have a mask on the bridge of your nose. You may want to talk to Kiralynx on here since she is claustrophobic and might be able to help.

[BlackSpinner]

The Hybrid does not sit ON your nose but pushes little pillows into the nose from below and covers the mouth.
https://www.cpap.com/viewImage.php?PNum ... -front.jpg
The other thing you might want to investigate is an hypnotherapist to help you deal with your phobias, especially one that knows NLP (Neuro Lingistic programming) Due to your phobias causing problems with receiving therapy it might be covered by your insurance.

[secret agent girl]

.

[Kiralynx]

Hey, Daniel-Mnementh!

Did you know Annie's son is a CPAPer?

What kind of nasal pillows did they put on you? Part of my issues with the vast majority of masks is the straps coming across my cheek and forehead and basically closing me in. I was trapped.

The two masks which work, and work well for me are the Comfortlite 2 and the Headrest.

Both have the head straps back from my face, and both have the mask come down over the forehead to the nose so my eyes and cheeks are clear.

The CL2 is a good mask for someone starting out because you can change from nasal pillows to direct seals (a special kind of nasal pillow) to straight nasal (what I call cover-the-snoot) mask just by changing the nose piece. It gives very good therapy, and, with a Hozer to lift your hose out of the way (so IT isn't trapping you when you try to turn over or change position), is a superior set up, in my view.

The Headrest is straight nasal pillows with a smaller head piece than the CL2. I lab ratted mine and put a CL2 strap on it, just because I liked the way the CL2 strap worked for me. Heck, I also put a CL2 strap on the Zzz-mask full-face mask I use when I have a respiratory infection.

The Headrest is amazingly comfortable, and is my summer mask because too much of anything makes for hot sleeping here in New Orleans. You'll find there are a number of other people here, including Rested Gal and Ozij who use the Headrest.

One thing which I can tell you is that my claustrophobia has eased significantly with proper CPAP therapy. When I walked out of the doc's office with a diagnosis, the idea of being smothered in a full-face mask resulted in my bursting into tears. Six months later, when I had a respiratory infection, I demanded a full face mask because I wasn't willing to go without my therapy long enough to get over the infection.

It's easy to panic when you're starting on something as challenging as CPAP. There's so darned much to learn! But I've always found that education is the key to overcoming unreasoning panic. You may find a sleep aid of some type helpful. Melatonin works for me. Various cognitive therapies can also be helpful.

You obviously have a handle on the issues. Defining the problem is your best first step -- and I think you've done that.

You've also taken the first steps in outlining a solution. I know that even in my first weeks, when I was getting a handle on leak rates and pressures, I slept much better in my own bed, even WITH all the CPAP paraphernalia, than I did in the sleep lab.

You can do this. After all, can a CPAP be worse than a Threadfall?

[SleepingUgly]

Hi Daniel, welcome. Were you diagnosed with any sleep disorders besides apnea?

A psychologist can help you with systematic desensitization techniques (ask if they do that). There are some psychologists who have been certified in behavioral sleep medicine, and that would be the best of both worlds, as they'd have a good understanding of the sleep issues and anxiety. There is a list on this website, but I didn't see anyone in VA proper:

http://www.aasmnet.org/BSMSpecialists.aspx

Perhaps you can ask at the sleep lab whether they have a psychologist that works with them, certified or not.