Ever notice the time stamp on many of my blog entries? I usually compose and publish them in the early morning hours…sometimes way before dawn. You know why? Because I’m usually awake at 3 or 4 in the morning. And why am I up that early? Because Ive usually had a bad night of breathing and have to get out of bed just so I can breath.
I lead a double life. A mild to moderate asthmatic by day and a severe one by night . Starting around 6pm everyday, almost like clockwork, it’s as if someone came along and turned my bad breathing switch to the “on” position. Out of the blue, my peak flows will drop by as much as 1/3 , and as the evening progresses, so will my breathing discomfort. By the time 9 pm rolls around, I’m usually so uncomfortable, that I’ll have to down a little Ativan just to take the edge off. The drug doesn’t do anything for your breathing per se, it works by mellowing you out to the point where you basically don’t give a s**t that you’re short of breath. If the ativan doesn’t cut it , sometimes I’ll call on the big boys for help….the opiates. I hate taking narcotics for my breathing, because while they sometimes help, they also have a lot of side effects and can be very addictive.
I don’t wanna sound overly dramatic, but there are times, especially during the evening hours, that my breathing gets so uncomfortable, I just wanna disappear. I try to remain as calm as possible and do all the things that you’re supposed to do when your dyspnea gets outta control, but most of these stress relieving techniques rarely work for me when my lungs get extra tight. Instead, I’ll usually go outside and sit on the front porch where there’s sometimes a breeze, and just tough it out the best I can. It’s during times like this , when all I can think of….. is not wanting to suffer with this disease anymore. It changes my personality and puts me in foul angry mood.
So why the huge daytime- to- nighttime swings? At first I thought it might have something to do with the time of day that I take my asthma meds. But thats unlikely, because I divide all of my meds into equal doses throughout the day to ensure more uniform coverage. My doctors thought that maybe I was having some sort of obstructive sleep apnea thing , but as of this writing, my sleep studies came back totally negative . Then there’s the exercise issue, could too much exercise ( ie walking) during the day make me feel like crap at night? I suppose it’s possible, but again, the findings aren’t consistent. On the weekends when I generally don’t exercise, I still have the same nighttime breathing problems that I do on the days where I do exercise…sometimes even worse.
A lot of people will read this and assume that my asthma is simply not well controlled , and will recommend that I increase my bronchodilator use and/or steroid intake. The problem is, I’m already on maximal dosages of everything! , except for steroids in pill form, which for me, is not an option. My primary care doc recently recommended that I start taking a mild opiate, like vicodin, just before bedtime to see if that would quell my dyspnea enough to catch some sleep. Unfortunately, vicodin wires me.
Whether it’s full on bronchospasm or just air-trapping that brings on this distress, these bouts happen with such regularity now, that I don’t look forward to nice relaxing evenings anymore. In fact, I dread them. And except for an occasional night time stroll to take my mind off it, you’ll never see me out in public after dark.
I found this interesting article in the ATS Journals about this very phenomena.
OK, We can’t always have cheerful posts. I try my best to poke fun and put a positive spin on all things asthma, but lets face it, this disease sucks and can really dampen your spirits. Next week I have an appt with the Palliative care dept at UCSF, to see if they have any NEW medications to offer me, in dealing with my chronic dyspnea.
Update : In early 2014, I had another sleep study done. This one came back positive for severe sleep apnea. Scientific studies have demonstrated that OSA can make asthma symptoms worse, but usually when you’re sleeping, not when you’re awake. So the mystery of the evening hour sucky breathing pattern continues.