To sleep, perchance to dream

[GaryM]

Or not, as the case may be.

Why is it that I can sit up in bed reading a book for an hour, with virtually no symptoms, yet as soon as I lie down and try to go to sleep the saliva seems to come rushing from nowhere and my jaw goes into overdrive gnashing my teeth together. Finally got to sleep last night at about 3.00 am. Then in the morning I feel like I could lie in bed until midday, but I know I have to get up and eat to try and get the calories in. I used to sleep like a log and managed with about 7 hours a night.

[Ellie]

Do you take any meds to reduce saliva, Gary? Does the issue persist or lessen as hours in bed pass?

I find having a strict 'No Screens' policy for an hour before bed helps with falling asleep easier, even having my PC on its night light setting interfers with my sleep.

Love Ellie.

[GaryM]

Thanks Ellie, sorry for the rant, I was feeling a bit fed up this morning. I probably made it worse last night by watching Netflix on the tablet. I normally read my Kindle which doesn't emit any light. I've resisted meds for the saliva so far because I was worried it might make it thicker. I have a small amount of pineapple juice first thing in the morning and last thing at night. I was going to ask a separate question about hyocine as my wife and sister have been urging me to try the patches that I've been prescribed. The saliva during the day is annoying but I'm coping with it as long as I don't start laughing or crying which can get a bit messy.

[Deb]

Hi Gary,

Don't say sorry for having a moan.. I had one this morning too. Things always seem worse in the night when we can't sleep. My bodyclock seems to be out of sync too. I read for a couple of hours in bed until I feel drowsy and then I can't sleep. In my case I think I'm feeling uncomfortable because I can't turn over or move my legs but i think its in my head because in the morning I feel really comfortable and warm and could easily go back to sleep.

I've asked my husband to wake me earlier but he always says he doesn't want to because I look peaceful. What he means, I think is he's getting some peace !

I'm going to try having my shower before bed and I've ordered some calming sleep cream. I'm resisting taking medication to help me sleep.

Heres to a better night,
Love Debbie x

[Ellie]

🤔 The pineapple juice might not be doing you any favours, Gary - it thins secretions for sure, which is great for mucus, but sometimes not so great for saliva...

The thing about the hyoscine patch is, well, it's a patch, so it releases its medicine 24/7, which might not suit everyone.

You may just want to take something to reduce saliva production before bed?

Sleep is so important for us, it provides much needed energy to get us through the day!

Love Ellie.

[Bowler]

Hi Gary as Deb said having a bit of rant is perfectly ok. Ann used some travel sickness patches behind her ear. They really worked for her. We found a whole one dried her up too much so I used to cut them in half and sometimes even a quarter. Might be worth a go, you can always stop.

[rachelr]

Sleep calming sprays and balms help me, as does meditation propped up by pillows.

[GaryM]

Hi Gary,

Don't say sorry for having a moan.. I had one this morning too. Things always seem worse in the night when we can't sleep. My bodyclock seems to be out of sync too. I read for a couple of hours in bed until I feel drowsy and then I can't sleep. In my case I think I'm feeling uncomfortable because I can't turn over or move my legs but i think its in my head because in the morning I feel really comfortable and warm and could easily go back to sleep.

I've asked my husband to wake me earlier but he always says he doesn't want to because I look peaceful. What he means, I think is he's getting some peace !

I'm going to try having my shower before bed and I've ordered some calming sleep cream. I'm resisting taking medication to help me sleep.

Heres to a better night,
Love Debbie x

I can certainly identity with a lot of what you say, Debbie. I have every intention of getting up at 8.30 with the idea that it'll make me more likely to sleep earlier, but as you say in the morning I feel more relaxed and comfortable and usually snooze from 8.00 until 9.30 or 10. The bit about leaving you in bed rings true, my wife likes to have an hour with a cup of coffee and online news before having to get me up.

[Barry52]

I used to feel guilty about having a nap in my recliner but not anymore. This disease saps our energy so rest following a disturbed night is important.

[GaryM]

🤔 The pineapple juice might not be doing you any favours, Gary - it thins secretions for sure, which is great for mucus, but sometimes not so great for saliva...

The thing about the hyoscine patch is, well, it's a patch, so it releases its medicine 24/7, which might not suit everyone.

You may just want to take something to reduce saliva production before bed?

Sleep is so important for us, it provides much needed energy to get us through the day!

Love Ellie.

I've not quite got my head around the difference between saliva and mucus. So, if I take hyocine to reduce the saliva, would that affect mucus? If it does affect mucus how would that manifest itself? I only occasionally have something in my throat, which I assume is sticky mucus, which makes me cough for a few minutes to clear it.

I'll try giving the pineapple a break for a while and see if there is any difference. I've been twitching a lot more in the last week, probably due to tiredness.

[GaryM]

Hi Gary as Deb said having a bit of rant is perfectly ok. Ann used some travel sickness patches behind her ear. They really worked for her. We found a whole one dried her up too much so I used to cut them in half and sometimes even a quarter. Might be worth a go, you can always stop.

That might be very handy, Phil. I'll bear it in mind if I use them.

[GaryM]

Sleep calming sprays and balms help me, as does meditation propped up by pillows.

I've never had trouble getting to sleep Rachel, until now. I think I might have to give it a bit more thought from now on. What is a sleep calming spray? My wife is an expert on lotions and potions, but I've never heard her mention anything like that.

[GaryM]

I used to feel guilty about having a nap in my recliner but not anymore. This disease saps our energy so rest following a disturbed night is important.

I've never been one who could nap Barry. I don't think I've slept anywhere other than a bed in my whole life. Never managed to sleep on a plane, train or ferry. My wife on the other hand........

[Ellie]

I've not quite got my head around the difference between saliva and mucus.

Different glands make mucus and saliva - generally, in talking about secretion management in ALS, mucus secretions cause issues in the throat and lungs, whilst saliva causes issues in the mouth.

So, if I take hyocine to reduce the saliva, would that affect mucus? If it does affect mucus how would that manifest itself?

Unfortunately in reducing the amount of saliva produced, you may end up having thicker mucus - normally we produce, and swallow, 1-1.5 litres of saliva per day, which helps to thin mucus, so ideally we should up our water intake by that amount if affected...

It is always trial and error to get a working dose of any saliva medication, likewise if your mucus is thickened as a side effect, the dose may need to be tweaked to achieve a balance.

[GaryM]

Thanks Ellie, very helpful as always. That's why I've been reluctant to start tampering with saliva.