sleeping upright: doable?

[runcyclexcski]

Hi all --

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.

[runcyclexcski]

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.

[Highlighter in reply to runcyclexcski]

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.🤞

[ck101 in reply to Highlighter]

I have this with Symbicort, back to old Becotide for me

[Troilus]

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 😁)

[runcyclexcski in reply to Troilus]

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).

[Bevvy in reply to runcyclexcski]

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.

[lakelover]

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!

[runcyclexcski]

Thank you, Lakelover. Sounds doable, will need to experiment.

[Js706]

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.

[runcyclexcski]

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.

[Dino40]

My OT got me a bed rest which helps a lot.

It's a bit like a garden lounger, it has a sloping bit that slots into ratchets so you can adjust the incline..

Think you can buy similar ones but it might be worth getting in touch with your occupational health department.

Here we self refer through adult social services.

[Wheesy]

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.

[Itswonderful]

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 ?

[runcyclexcski in reply to Itswonderful]

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.

[ChrissieMons]

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!

[runcyclexcski in reply to ChrissieMons]

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.

[lucymb]

are you engaging with more dust than usual?housedust mite debris and pillows?

just ideas xx

[runcyclexcski in reply to lucymb]

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.