ALS From Both Sides

What is it like to use BiPAP?

I'd had a very slow progression of ALS (first definite problems noted 9 years before I began noticing some breathing problems). At first it was just feeling a little short of breath when lying on my back. With time that got more definite. I began waking up with headaches occasionally but not consistently. I saw a pulmonologist (physician specializing in respiratory problems) and had pulmonary function tests done. My function was at 70%, still good.

After time passed and my weakness progressed, I reached the point where I had to sleep on my side and even that became uncomfortable at times. I got a hospital bed so I could sleep with the head of the bed up and that helped for a while.

Then I started experiencing repeated awakenings with an awful rushing feeling starting in my chest and spreading. My heart would be racing and pounding. It was not too bad during the day though there would be stretches of an hour or two when I was uncomfortable even though sitting up. But nights were awful. I would eventually fall into an exhausted sleep by turning on my side while having the head of the bed up 45 degrees, but you can imagine what my back and shoulder felt like after a couple of hours. It took hours to fall asleep and I was waking my husband up so many times a night to be repositioned, neither of us were getting enough sleep.

I went to see my pulmonary doctor again and he recommended a "poor man's" sleep study. Rather than have me come into the Sleep Center for an overnight full monitoring session, he sent me home with an O2 Sat. monitor. That is a little machine that has a fingertip sensor you tape on to detect what your oxygen level is. It also takes your pulse. I wore it overnight (a fairly good night) and we found that my O2 dropped to 65 % at times. Normal is over 90%. My pulse was humming along at 90-110 even in my sleep. Normal is 60-90. I was promptly visited by a home respiratory care agency and they set me up with the Bi-PAP machine. (No attempt was made to define whether my problem was apnea or hypopnea, nor were ABG's needed. The insurance accepted my claim on the first try and didn't ask for any further proof that I needed BiPAP.)

The machine itself is small, about the size of a 4 slice toaster. It has a hose that attaches to a soft, flexible plastic mask that fits over your nose. (Doesn't cover your mouth.) There are Velcro straps on the mask that fit around your head so the mask fits snugly and air doesn't leak out. When turned on, the machine blows air into the mask. It doesn't use oxygen, just regular room air but it can use oxygen if you need it.

Now the fun part! The therapist selected a mask she thought would be the best size for me, and went about strapping it on. Imagine being short of breath to start with -- not just a momentary event but a couple of months of feeling miserable in stuffy rooms and suffocated by lying flat -- then imagine having someone put a plastic mask over your nose. Instant panic! Being the kind of person who never learned to swim because I was terrified of water up my nose and dunking my head didn't help at all!

"Where is the Valium??" I whined as I sat forward in my chair and gasped for air.

I convinced myself I could breathe through my mouth just fine and relaxed after a moment and let her work with the straps. I told her I thought a lot of my anxiety came from the fact that my arms are so weak and I knew I wouldn't be able to just grab the mask and pull it off by myself. "A control issue," as they say. She said I needed to breathe through my nose when the machine was on or the air pressure was lost through my mouth.

"OK," says I, gamely.

She turned the machine on . . . Ever ride in a car at 80 miles an hour with your head out the window? All that wind and you can't get a breath of air because it is moving so fast! The mask was not snug and air was whooshing out and I opened my mouth to take a breath and my ears popped from the change in pressure. I found some arm strength I didn't know I had and off it came!!!

She assured me it would feel fine once the mask was snug and I braced myself to try again. Mask on, air blowing wildly in my face as she worked with the straps and I gasped through my mouth. "There," she said. "Breathe through your nose!" I tried. Snorted. Tried again. I found that the pressure wasn't noticeable at all as far as taking a breath was concerned. It was just as easy to breathe with the mask on. I sat there, trying hard to stay halfway relaxed as she adjusted the straps.

Just as I was thinking I might be able to tolerate this, I had to speak to answer her when she asked if there were any leaks or if the straps were uncomfortably tight. When I opened my mouth the air rushed out and my ears felt the pressure change. What a weird sensation! It was hard to talk around the pumps of breath from the machine. Yuck!!!! I wanted out! She encouraged me to keep breathing through my mouth.

It took me a half a minute to settle down again and just breathe, but when I did I could feel a tremendous difference. WOW! It worked! I was rewarded with the first full breaths I'd had in months! That tight, achy, tiredness in my chest that I had been living with was eased. That was all the encouragement I needed to keep going. She decided I needed a different size mask as there were still some small leaking areas and it seemed to be putting a lot of pressure on the bridge of my nose. We swapped masks and tried again. Again the process of getting it on was icky, but once it was halfway snug it felt not just tolerable, but good.  I didn't really want to take it off when she left, but neither did I want to be home alone with this weird contraption on me!

My husband had not been able to be home during all this, so when we went to bed that night, he had to get the thing on me without instruction. It is quite simple but he was not prepared for me to get all panicky while it was loose and the air blowing in my face. (The therapist had recommended having the machine on while putting it on.) We managed though and I was soon breathing happily if a little tensely as I experimented with such death defying maneuvers as tilting my head and swallowing. I stayed sitting up for a long time, but just couldn't fall asleep and finally felt secure enough to try putting the head of the bed down. No problems! It required a little adjusting of the fit as it wanted to leak a little air, but that was easily fixed.

But I still couldn't get to sleep. I sleep best on my side and decided to give it a try. I woke up my husband, told him what I wanted (getting better with the talking part) and he turned me. Wriggled the mask a little to seal the new leaks and I was comfy and snoozing shortly.

A couple of hours later I awoke in a panic and yelled for him to "Get it off!" It took a little doing to get it undone in the dark. I decided I'd had enough fun for one night and left it off. But now breathing was uncomfortable. I had him reposition me a couple of times, put the head of the bed back up, and soon decided I really wanted the mask back on. Long suffering hubby made irritated noises, but put it back on. This time I had him leave the machine turned off until the mask was in place and that worked better for me.

Finally convinced that I was in control -- it wasn't forcing breaths on me or fighting my breathing at all, I curled up on my side and slept for 4 hours straight -- except for one little wake-up by our kitty who had decided it was time to check out what idiocy I was up to now with that thing on my face!

She sniffed carefully at it, tickling me with her whiskers, sat and stared for a bit, sniffed again, then turned away. "Whatever gets you through the night," she shrugged as she wandered off.

I agreed.

I didn't realize how pervasive lousy breathing is until after a week or two of using the machine at night and for a rest period during the day or evening. I had been feeling so bad in so many ways and never associated it with the breathing problem! I had been tired, weaker than ever, totally lacking in stamina. I simply sat and played solitaire on the computer all day. I experienced periods of dizziness, feeling faint, feeling nauseated. I had no appetite and felt just stuffed after a few bites (a real change for me!!) so I was losing weight. I was choking more easily, and if I did eat, I had abdominal cramps and nausea immediately afterward. I was miserably cold most of the time. It wasn't that the air around me felt cold, it was like my bones were icicles and the cold was seeping outward. I knew my heartbeat was too fast and suspect that my blood pressure was very low. Emotionally I was outwardly OK but I could feel a constant state of anxiety that somehow existed side by side with a sort of mental sluggishness and lack of initiative. Anything that seemed to make it harder to breathe -- a stuffy room, a hug, lying down, sent me into a momentary panic. Making love resulted in panicky gasping for air. Bed time was no relief. In fact, it was the worst because I knew I was going to be jolted awake over and over.

Every one of those problems started to improve immediately with the Bi-Pap. That isn't intended as a testimonial ("Step right up here folks! Get your Dr. John's Famous Elixir! Cures the apoplexy, nervous conditions, gout, and sweetens your breath!") but simply to show you how breathing problems sneak into everything your body does. I had no idea that most of my problems were related to my breathing. I can't promise you that you will have this kind of results, but I do think you will find that overall you feel a lot better if you start using Bi-PAP. (And no, I do not own stock in Respironics Co.!! Wish I did!) Having to wear a stupid looking mask every night, putzing around to get comfortable and get rid of annoying little leaks, the annoying cold stream of exhaled air, dealing with a lumpy head of hair and facial crease marks from the mask every morning is not fun, but it is so much more tolerable than living without BiPAP.

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