Sleep issues and MAC?

Hi @kathyhg you may have noticed I changed the title of your post to "Sleep issues and MAC?" and moved your post to the MAC & Bronchiectasis group (https://connect.mayoclinic.org/group/mac-bronchiectasis/) so that your post will be see by other Connect members who have similar experiences.

That must be so frustrating to have your sleeping issues worsen. I wanted to tag fellow Connect members @pfists @windwalker and @heathert as they may be able to offer their support as you try to find a solution.

Back to you @kathyhg how many hours of sleep are you getting per night?

It’s hard to tell exactly how many hours of sleep I actually get but I often wake up every hour or two all night. I can get as few as 4 or 5 hours and as many as 8 hours depending on how early I go to bed. The interruption in sleep might be the most difficult.

@kathyhg - I too have sleep issues, but mine have been with me most of my life. Here are some of my personal observations. On med days, my sleep is especially fractured, as well as when I have to neb more than once a day. On days when I am most physically active I sleep better, so even when I am very tired I force myself to be active for a couple hours, even if it is just housework, shopping or a good walk. I also do everything i possibly can while on my feet - for example, when I paint or sketch, I stand. I limit caffeine to 2 cups of coffee early in the day. Not even decaf or green tea later in the day. Finally, my Mom's rheumatologist told us many years ago that you shouldn't fret about waking up during the night, just rest quietly. He said anxiety about lack of sleep becomes a cause of it. And he said don't try to make up for wakefulness by sleeping later or napping. Maintain a regular schedule. My schedule does include a 30 minute rest midafternoon, but not any longer.

@kathyhg
Those were good suggestions from @sueinmn
I too really have a struggle with the sleep issues in the past.
You may already do these suggestions but to add to what She said try and be conscious of the light from phone or computer if your on it at night especially the blue light that comes from divises that can stimulates your brain to be wakeful. I always dim my phone at night. Some phones you can program to automatically dim in the evening. Try to keep your bedroom lights dim and don't have any lights on when you go to bed not even a night light. If you can have more of amber light bulbs in the bedroom that's better than the newer bulbs they have now thatare more blue. The dimer light and amber light produces melatonin in your brain. I drink tart cherry juice at night it produces melatonin and I take magnesium in the evening it's a natural relaxer. Or even Epsom salt bath has magnesium that will absorb in your body and relaxes you. Try and keep a schedule to get up and go to bed same times. I would say don't nap unless you have to because they can throw your schedule off.
You may check on some antidepressants the one I take is remeron it helps you sleep and the side effect was weight gain which most people with MAC need. I know it helped me sleep and gain weight. Maybe try and find a qualified Dr to help you with this because there are many new medications out there too.
Hopefully some of this helps you!
Shari

Thanks for the suggestions.

I used to read in bed but have stopped that as well, trying to (re)learn that my bed is only for sleeping. I have recently started staying up until 10 or 1030 instead of giving into the urge to go to bed at 730 or 8 pm when I get really weary. I used to go to bed so early but I still only slept about 8 hours; the difference (I learned) is that I don't get so anxious because I know that I'll sleep enough somewhere in that 12 hours. I heard that's a bad idea so I stopped that. Anyway, I get up every day some time between 630 and 730 because we have a dog that needs to go out and i like to get that good long walk in at the beginning of the day.

I have never heard of drinking tart cherry juice but will look for it at the store. I have never heard of remeron either; i asked my doctor about sleep pills and his concern was the interaction with the mac medication and/or additional stress on my liver. He said Ativan is the most compatible with the meds and I sleep great with 1 mg of Ativan but I know it is highly addictive. His opinion is that, for now, the most important thing is to get back on a good sleep cycle and to sleep enough to function during the day and i need it to build up my immune system. I'd rather not take anything but I was often barely able to function during the day.

I look forward to trying your suggestions. I won't bore you with details of my sleep but will let you know when things improve.

Thanks again,

@kathhg, I didn't develop sleep issues until I was 4 yrs into menopause. I also had a raging mac infection, which can cause night sweats. so, I am not sure which was the true culprit of the constant hot flashes that would awaken me every hour. I bought a mattress that had a memory foam topper during that time and lasted only one month with it. The foam held body heat and literally roasted me like a chicken. New mattress helped a lot. Sleeping with 100% cotton sheets and all natural fiber blankets also help to sleep cooler. I have slept great since 2016. That is the year I started testing negative for pseudomonas and mac free. Until that day comes for you, try sleeping with lower temps at night with A/C. Can wrap a frozen pack in a tea towel and place it under your neck. Sleep with a fan blowing on you. That is how I dealt with hot, sleepless nights.

I think the night sweats are what often wake me up too. I’m 15 years post menopause so I’m sure you’re right about it being related to the Mac. I have a foam topper as well but never connected it to the night sweats. I bought it for comfort last year when I spent so much time sick in bed.
Thanks for the suggestions!