following a hospital visit, I've been FT on prednisone, 2 inhalers and montelucast for the last 2 months and staying in an allergen-free tent, waiting for xolair for my allergic asthma (no progress so far).
Sleeping has been OK during the last month, once the drugs kicked in. However, for the last 3 days, for no apparent reason, I found that I cannot sleep in any position for more than 1 hr. After 1 hr on the left side, tightness in the lungs builds up and I wake up. I turn on the right, the tightness goes away within 1 min (feels as if liquid is draining out of the left lung), and comes back on the right side in 1 hr, then the cycle repeats. I know that I cannot sleep on the back and the belly anyway. Once I get up/sit up I feel mostly "OK" (can write, do basic housekeeping stuff, in a respirator). Nothing has changed in my routine, from what I can tell, except that I went to a respiratory hospital for an NO test (wore an FFP respirator the whole time), and started doing basic houskeeping (in a respirator, too) for 2-3 hrs at a time. Maybe the physical activity mobilizes the fluids, who knows.
Since I am already on prednisone, I do not think any additnioal drugs will help, except Xolair. Are there any "mechanical" rigs for sleeping while sitting fully upright? I am an engineer, so I can build anything, if this has been done before and has a chance of working. They have never found any major fluid build-up in my lungs, by any method (the usual smug "your lungs are clear!" insight), so I am not going to the hospital for this.
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Sorry, now that I think about it -- would it help if I took the rescue inhaler before going to sleep? Since I now live pretty much in a sterile environment, with no triggers, I haven't taken the short-acting agonist for the last 2 weeks. Feels a bit weird that change of a body position during sleep would be a "trigger", but I guess it is what it is. When I was very sick, even standing up, or turning sharply would cause chest tightness.
Is it "normal" to take the rescue inhaler right before going to sleep? It only works for 4-5 hrs at a time, but I will take 5 hrs of non-stop sleep. Can I gradually get desensitized to the rescue inhaler if I take it every day before going to sleep? I take Seretide; that has a LABA, but I guess this is not enough.
I took Seretide for 10 years plus and found it was causing my lungs to fill up with liquid all the time. If I shifted position in bed I would cough badly - [constant cough for over 6 years undiagnosed]. If you type in search my previous posts may surface. Once I changed medication, my cough completely disappeared [about 3 years ago] and I never looked back.It's just a thought.
I found out by accident. Seretide had terrible side effects for me, but I always qualify my posts as I know, with asthma, everyone is different.
It also caused dreadful night cramps in my legs which also disappeared the moment I changed to Duoresp 160.🤞
Have a look on Amazon. I bought my dad a sponge wedge thing, which sort of worked well for him. Mind you I had to fasten the pillows in position with bungee rope. ( I’m a Blue Peter engineer 😁)
Trolius -- how is the gizmo called? I can surely do bungee cords
Well, OK, found these wedges. How does one prevent the sleeper from, well, toppling sideways in her/his sleep, and her/his butt hurting from sitting all night? I am thinking of some climibing-like harness (which I have, from the days when I was not disabled).
You have to get used to wedge pillow. I kept falling off but after about a week was ok. Now wouldn’t be without. However this doesn’t and isn’t designed to keep me up right. Just means am lying on a slope.Other people on site (this and others) who are unable to sleep lying down at all no longer use a bed. They find recliner chairs much better. Use one where legs can stretch out /up in front but are sat up right.
I broke my shoulder 2 years ago & had to sleep sat up for a few weeks. With a few pillows & a v-shaped pillow I had no problem at all. You get used to it & nothing hurt. Perhaps you need to put your arm in a sling like I had to!
I broke a few of the vertebrae in my back at the end of June due to osteoporosis and couldn’t lie down with it for a number of weeks.
I just used one of the wedge pillows as a base and built myself a slope to sleep upright with using a v pillow and a pile of other pillows. Then as I improved I removed pillows and made the slope more gentle until I could lie down normally again.
Thank you, JS; need to look up what V-pillow is. I am allergic to mites, so I keep all my pillows in waterproof kayaking sacks... but I can surely make it work.
I have 4 lung problems and I usually sleep at an angle 0f 45degrees with the help of a few pillows and an "A" shaped pillow {I think that is what Dunhelm call it} which helps a lot. I was tempted to buy an adjustable bed but found out that this did the same after a bit of messing about to get a comfortable and a good night sleep.
You could try raising the head of the bed on blocks and use the wedges and v pillows but you may slide down the bed in the night. Can you afford to change your bed for one that is adjustable ?
I would prefer not to get another bed, since my spouse would not like it, and these beds use over-sized/overengineered mattresses that become infested with mites which are the main trigger for my asthma. I currently sleep on a thick 10mm Perspex sheet and a thin inflatable camping mat which I wipe daily -- to avoid dust build up and trapping. Anything with numerous moving parts and springs will become a dust sink in my case. I think I will get a few pillows and try what folks have suggested here -- wedge myself between pillows and experiment with different configurations.
I slept almost upright for years when my asthma was bad. We made a chair shape with 4 pillows behind, and one wedged in either side like arms. I slid down a bit in the night, and wore a bed jacket (like a fleece) to keep warm, but I got used to it. If you have a pillow under your knees you don’t slide so much. The wheezing made me so exhausted any sleep was good. It’s a cheap option!
Thank you, Chrissie! I will get pillows, seal them in plastic like I always do, and will try arranging them. I may get firm foam used for seat cushions: my wife and I have recently made our own asthma-friendly love seat, so we know how to make cushions. The fleece jacket makes sense too, since a blanket would not stay put, indeed.
I have been sleeping in a HEPA-filtered chamber with all-plastic double sealed "pillows" and coolmax sheeting which I laundry-wash at 60C daily. I have HEPA filtered air blowing at my face while sleeping, with a 5-channel particle counter over my head measuring the counts in real time so, not dust mite in this situation.
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