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.

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17 thoughts on “The nights are the worse.

  1. Steve,
    Thanks for sharing this with us. I think most of us really have no idea what this disease is like for you, and I appreciate the insight.
    Hugs,
    –Kerri

  2. This sounds absolutely horrible. I also have a switch that goes off in the evenings, at around 8PM and I'll regularly feel tight from then on for no apparent reason. I have thought that for me it's related to exercise because I have worse nights if I have run that day or have been running a lot in general, though I may need a few more nights to base my theory on ; )

    So, I seriously doubt I experience any of this at anywhere near the intensity you do, but I can see that we've got a similar pattern going on. Sorry you go through this night after night, it's a really crappy disease.

    Danielle

  3. Thanks Danielle, I suppose it I could pin it down to just exercising too much during the day, I would stop exercising all together. Honestly though, I thinks it's just the disease catching up to me. It's a amazing Ive gotten by this long without have severe symptoms ALL the time. I need new lungs, but don't want a transplant.

  4. Sorry you have to experience that. Evenings are supposed to be the most relaxing part of the day. I agree with Kerri. Good thing you have a blog to vent in. Asthma totally sucks.

  5. Being up at night can get really lonely, not to mention not being able to breathe. I feel for ya.

    I know sometimes it's contraindicated for asthma, and it's pretty obvious but have you tried Benadryl? I find it just knocks me out when I get really bad.

  6. stephen i swear we were seperated at birth????? i kept tellin my self that it was the ghost in my house that kept wakin me up at 333 am i know half of the devil but nope it was and always has been just my struggle for air but i have found something that seems to work for me it a whole body vibration machine and it seems to relax me mabe give it a try!!!!!! at least your dr.s will give you something to help you sleep mine say you'll forget to breath????? i'mean that happened once but at least i got some rest 6 weeks on life support but your damed if you do !!! hope you sleep tonight marsh p.s. did you know it was a full moon i never sleep during full moooooooons ??????? marsh

  7. First , thanks for you blog. Even though my asthma is not as severe as yours, I have found a number of your post to be very helpful. It is so hard to explain how angry asthma makes me feel. I also have diabetes. That was easy to adjust to , it rarely gets in my way.

    My sisters and I have just started reading about the buteyko method from Russia. US studies seem to indicate that it does nothing for the numbers ( peak flow) , but the people that practice this breathig method use less drugs and have less hospital visits. I am interested because I have found that if I can slow down my breathing and get control, asthma attacks are shorter. Have you tried the Buteyko method?

    two things like so far – 1) they don't tell you to get off your drugs and 2) this is not a miracle scure — it takes 5 to 6 months of practice.

    here's hopong last night was peaceful

    1. Hi and thanks for stopping by. I have to let you know, that as an RT by profession and a life-long asthmatic, I have very strong opinions on alternative therapies, especially the Buteyko method! While it may sometimes work for people with very mild asthma, severe asthma is a totally different disease. Encouraging people to slow they're breathing down and take less drugs, could be sending a potentially deadly message to them. Not to mention the hundreds of dollars one has to fork over, for this so-called treatment. Just my opinion, but when it comes to this disease, I'll put my faith into traditional science.

      Having said that, Im glad its working for you.

      1. I haven't tried it yet, I have just had some experiences that made it sound useful. And everything I have read so far has people staying on drugs, just using less. And I am a traditional medicine person — hence the questions and looking for people that might have tried it.

  8. Stephen, thanks again for your very, very educational posts. Like you, I have strong opinions in favor of traditional medicine rather than alternative options. Plus, once you have a chronic medical condition everyone wants to provide one with well-meaning but un-asked for advice. I just got an e-mail yesterday from a relative informing me of the Buteyko method, which of course I've read about for years. I replied something to the effect that I don't have the energy, time, or money to try the many, many, many treatments people suggest, some of which might even be harmful. I prefer to stick to what I've learned from my physicians, legitimate medical websites, and RTs.
    Anyhow, keep on keeping on…!
    GayleMyrna

    1. Hey Gayle, I know you have pretty severe asthma too. If you get the opportunity, you should consider taking part in one of the SAPR studies around the country. The more asthmatics they can recruit, the better the understanding they'll have about how to better treat this sucky disease. Now here I go pitching advice….lol

      You keep on keeping on too!

  9. Hi Stephen,
    I can sympathise with the night time symtoms. I call it night time madness as I never know what makes it worse and why it gets so bad. My drs tries switching my pred dose to the evening but it didnt make much difference at night other than keeping me wide awake but my asthma was still bad and not taking them in the morning meant i struggled during the day.

    Like some others have said i favor traditional medicine over alternative therapies. mainkly because I have tried some of them and suffered the consequences of them so am very sceptical now.

    take care Olive

  10. Hi Stephen,
    The nights are always the worst, because it's dark, everyone is asleep and I just can't breathe. I totally understand what you're saying and as always, your blog has educated many in the difficulties of living and surviving with a disease like this.

    As others have also said, and you have pointed out, I've got strong opinon on methods such as the Buteyko method, I even blogged about it a while back. Makes me angry that they take people's money and yet can acually make them so much more worse than before because their methodd just doesn't work for severe and brittle asthmatics.

    Stay well
    Joey

  11. Thankyou Stephen for your blog. Just knowing you and many others are awake at night struggling to breathe too, gives me some comfort. Uncontrollable asthma on maximum drugs is only a recent event for me beginning 6 months ago with a couple of flares now chronic. ALL test show my lungs and peak flows are perfect but still struggling for air. Nights are the worst. In desperation I took Tramadol, an opiate, prescribed for pain relief after an unrelated surgery years ago, to calm me down and try to get back to sleep. To my amazement I have stayed asleep till morning and woken up feeling NORMAL. I would expect to be struggling again for breath on waking as asthma meds expired. I’m becoming convinced of the connection between the brain messaging and lung function. Opiates break that defective messaging. I’ve only tried this for 3 nights and not in succession trying to avoid opiate use, so only experimental. Will advise of longterm outcome. My sincere sympathies to you Stephen, take whatever is needed to get sleep and reduce your anxiety. Atleast there are less ads on TV at 1.00am and some good viewing!!!!!

    1. Sorry to hear that you’re struggling with your breathing at night. Opiates help my breathing a lot, but they also keep me awake so I dont take them at night. Actually , as of this writing Ive pretty much weaned off all opiate medications ( too many side effects). I do however continue to take a little Ativan for anxiety and sleep.

      Good luck on the trial!

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