Author Topic: TO SLEEP....  (Read 1406 times)

Emmerson Elliot

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TO SLEEP....
« on: September 04, 2015, 12:15:21 AM »







 

Re: Is it Ehlers-Danlos Syndrome (EDS)?

« Reply #502 on: October 16, 2014, 01:45:33 AM »



TO SLEEP, perchance...



SLEEP is a major issue for a lot of people with ME cfs, FM, POTS, Hashi's and EDS etc.

Here are some things that have helped me. I manage to get a good night's sleep very often using these principles.

The information presented below is for your information only and is not intended to treat, diagnose or prescribe in any way.

This info is a rough draft/work in progress that will be updated over the next few weeks.

(I know it seems like a lot of info but sleep is a major problem for many of us so it is never going to be easy to solve.)


THESE IMPAIR MY SLEEP

Cut out or down on these- or at least  watch them and see how they affect your sleep

IMO caffeine and blue screens are the biggest hurdle to good sleep.

1  Caffeine   

coffee tea, cola drinks dark chocolate,  I cut it out altogether if I need to sleep - sometimes you need to stop them for a few days if you are sensitive to them; Most days i find coffee after 11 am will keep me awake; i have found a good organic fairtrade decaf bean that i make in an espresso machine (a bit in the morning is a good vasoconstrictor to get you going in the morning) but sometimes I have to cut it out altoghther for  few days to sleep again. Even decaf has some caffeine in it i believe so after your cut - off time drink cocoa, or herbal tea.

2 Screen time

Especially laptops. But also phones

I try to stop using them by 6pm sharp
 (Or use a yellow filter or glasses or install Flux on your laptop - a free download - it automatically dims the light or turns it yellow at 6pm in your time zone.)

Sorry but the blue screen light switches off your melatonin so it WILL prevent you sleeping.

This is a choice I make and if I really need to sleep I have NO LAPTOP all day (yes I read a book instead!) - that usually works.


3  Fizzy drinks including sparkling mineral water

4  Red food colourings  - egin bottled pasta sauces  -I have them at lunch time if they are on the menu - not at dinner

5 Alcohol - may help you get to sleep but will wake you in the middle of the night as it is metabolised

6 VITAMINS
Some types and brands of vitamins affect my sleep especially B complex - always take them in the mornings and eliminate too if they keep you awake

7 Gelatin - anything with jelly in it like.... um... jelly... will keep me awake - not sure if it is the gelatin or the colourings and preservatives but I avoid this after about 2pm if I want to sleep. (It is good to take gelatin though in general for EDS connective tissue building I think)

Same with some things like Magnum icecreams - so if you cant sleep  - look at what you ate that day and identify repeat offenders and remember them.....ou identify yen if you eat them again look at how you sleep that night ...that way you identify your problem foods

8 Apples and Grapes - these stop me sleeping if eaten in the evenings  - apples are OK if peeled; I used to wonder why  - they are both High in  FODMAPS and apparently FODMAPS can interfere with sleep too - forgotten why now


9 FLUIDS
Hydrate well with electrolytes early in the day and afternoon so you do not have to drink too much in the last couple of hours before bed.


These help me sleep


1  BLUE LIGHT
Using  a special blue light in the morning to switch off melatonin and thus re-set the body clock I use  a Phillips Go-lite blu but I think they are off the market now - this was recommended by my sleep specialist   - it works well if you use it for a few days in a row

2  IM vitamin B 12 INJECTIONS - I take I mg in one ml weekly ( every 7-9 days)  - B 12 tablets do NOT help me and your B 12 levels can be fine but it still helps. It also helps some with nocturia so it may work that way - so you do not have to wake u to pee



3 Aqua -aerobics
- doing an aqua aerobics class in the evening almost always helps me sleep well that night

Ditto (if I am up to it) a body Pump class - or the recumbent parts of it.

If you can't get out for an aqua session a WARM bath may also be helpful (not HOT  that will exacerbate POTS and so decrease sleep quality). Lavender oil in the bath if you like it can help,, as can spraying it near the bed - Lavender oil  is also a natural insect repellent so will do a double act in summer of repelling mosquitos while you sleep if you dab it on exposed areas like hands neck shoulders chest etc


A warm tea of chamomile or Linden ( Lime leaf or flower) and herbal blends will also help

Getting BACK to SLEEP after early AM wakeup - eg 3 am

IF you DO wake up in the night  - try not to switch on the lights as that turns off your melatonin and so stops you getting back to sleep

Get an electric overblanket and turn that on if you are cold - the warmth may help you get back to sleep



Additional points

If you have POTS/OI do NOT wear compression clothing in bed ( except for short times - say an hour or two  -  if you are having a bad crash)

and do NOT elevate you feet on a pillow (much as you would love to)  these signals to your Baro receptors that your BP is too HIGH and so they LOWER your BP even further.


GERD

GERD will wake you up often without you realising it.

I take a teaspoon of sodium bicarbonate in half a glass of water about half an hour or so before I go to sleep. This helps a lot but you need to stay upright for about half an hour after you take it for the gas to all come up and out.
Keep some prepared in your bedside survival pack (!) to take if it wake you up in the night. GERD is often caused by lactose intolerance and  fructose malabsoption so look into  that and treat it with a low FODMAPS diet and lactase capsules as well - that will help.





PILLS and POTIONS

Au natural

L- tryptophan
L- theanine

Valerian - this makes me drowsy the next day so I try to take it early  - by 9 pm and only take small amounts

Melatonin

I got the best effect from slow release melatonin (Circadin) - only 1 mg is enough and again do not take it too late as it makes me drowsy the next day; I think it is established that small amounts are sufficient and larger doses do not help more.
I get that on prescription in Australia; ( I checked with the ?FDA )   it is legal to import it in small amounts for personal use but Iherb.com  - who stock a good one and is reliable and efficient - will not export to Australia  2014

sustained release melatonin cheaper than Australia and good quality  WILL export to Australia 2014
http://www.worldwidelabs.com/products/melatonin.php

Magnesium  - good to relax your muscles - I take it in the mornings tho taking it at night makes sense - however if you take too much it will give you the runs and so potentially wake you up....

Not so natural

Phenergan - (also good for MCAD for those looking into that) If you are having an allergy attack you will need to tke it anyway so take it before bed if you can wait and take Phenergan in preference to zytrec which will not make you drowsy.

Clonazepam - also thought to have a double whammy of being good for MCAD. IT IS HAIT forming so not good to take it on a regular basis

 
tip - I break a tablet in half and bite off the smallest amount I can - often that is enough to get you to sleep; if not repeat at half hourly intervals until you get to sleep.


TEMERATURE CONTROL

unfinished section

A few things to remember

Hot drinks will make you hot; cold drinks will cool you down (and also vasocontrict   -  so good for POTS/OI)

NOISE CONTROL

Make sure the room is quiet

wear soft earplugs if that suits you

I like to put a soft pillow over my head - keeps most noise out and keeps your head warm

Blackout curtains and heavy curtains if you can to block/muffle noise

White noise helps a lot of people - so a fan in summer or you can buy CDs etc with white noise, ocean sounds, etc - these can be  Very

effective  - both in getting to sleep and in getting back to sleep if you wake in the early hours.

Here is an example called Pink Noise
https://www.youtube.com/watch?v=scI2l4rw68w




HYDRATION

Unfinished section-
don't go thirsty  - ever  - but especially not in the afternoon or evening or thirst will wake you at night - B12 shots help with this

Tips

Water  I have a fantastic water bottle that I keep by the bed
You can drink out of it without sitting up - but be careful of choking which is already a risk if you have dysphagia
 The brand is Contigo

here is a pic - you press on the blue valve part at the back  and a valve opens so you can drink without spilling it  - also does not spill if you drop the bottle, so better thatna a water jug to keep near the bed.

http://www.kitchenwaredirect.com.au/Contigo-Hydration-Autoseal-Water-Bottle-Blue?utm_source=google&utm_medium=CSE&utm_campaign=ebay_commerce&
keep small packs of coconut water near the bed so if you get thirsty in the night you can drink it and go back to sleep without sitting up


General

Avoid having red and bright colours in the bedroom  they are too stimulating- have calm and cooling colours like blues and greens

Make sure the room is free of odours as man of us have a heightened sense of smell - so remove any banana peels, apple peels  or cocoa cups as those scents travel and keep you awake. fruit and veg also emit gases  -? ethynol - which may also keep you awake I am guessing.

Routine

Before bed each night check that you have everything handy so you don't have to get up in the night

water to drink, or coconut water,
 a small or brown or dim light so you do not have to light a bright or blue light,
a po if you do not have a bathroom or en suite handy,   
 a clock with its own light so you do not have to turn on a bright light to check the time;
all fruit and food removed from the room or covered.
a fan handy at the foot of the bed.
a warm and a cooler cardigan or pyjama top to keep your arms and shoulders warm enough





SLEEP STUDY

It is a good idea to have one done

try to get the one where they wire you up and you wear the gear at home as many find it impossible to sleep in hospital = and you have to lug all your essential survival equipment into hospital for  one night which is a pain - us the trip in will exacerbate y
our OI/POTS and so interfere with your sleep.

Ask them what they are doing the sleep study for - if is  just to detect sleep apnea is It likely that you have sleep apnea?

Why I say this - I had  a sleep study which cam e back normal - when I saw another sleep specialist she said "I would not bother doing a sleep study on you because from what you tell me I don't think you have signs of sleep apnea" - she was right  - I did not

When I had my study I could not sleep so the techy said to take a sleeping tablet - which I did - and so I slept all night - then they said - slept well all night on the report - my problems are sleeping WITHOUT  a sleeping tablet - but they were only looking for sleep apnea.



PHONE 

whatever you do TURN YOUR PHONE OFF overnight (and preferably do not have it ear your head when you sleep - it has been shown to alter brain waves while you sleep even when switched off.)

A beep from a message will invariably wake you at 5 am otherwise.... so add switching your phone off - without looking at the screen as even a few seconds of blue light can affect your melatonin  -  into your routine


This may also be of use for pain issues

Pain and  Sleep: a clinical approach  - clips by Dr David Cunnington

http://sleephub.com.au/pain-and-sleep-clinical-approach/


When fructose isn't absorbed it travels down to the large intestine and attaches to tryptophan. So then the tryptophan isn't available to make melatonin and seratonin.

 when  you  have too much fructose if you are intolerant you may therefor  have difficulty sleeping.

The disorders Fructose Malabsorption and Lactose intolerance causes improper absorption of tryptophan in the intestine, reduced levels of tryptophan in the blood" http://depression.wikia.com/wiki/Tryptophan

......................................................................................


This is also a useful clip to watch for sleep ideas


This is great on OI - orthostatic intolerance and fatigue, brain fog, headaches, chest pain etc  - oh and why they should not keep you up on a tilt table until you faint!

Dr Alan Pocinki
http://vimeo.com/35766364



EE

Emmerson Elliot

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Re: TO SLEEP....
« Reply #1 on: September 04, 2015, 12:24:58 AM »

Sleep disturbances and autonomic dysfunction in patients with postural orthostatic tachycardia syndrome

 Front. Neurology., 06 July 2014 | doi: 10.3389/fneur.2014.00118

http://journal.frontiersin.org/Journal/10.3389/fneur.2014.00118/full?utm_source=newsletter&utm_medium=email&utm_campaign=Neurology-w34-2014

EE

Ryan Ryder

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Re: TO SLEEP....
« Reply #2 on: June 22, 2016, 09:54:56 PM »

SLEEP STUDY

It is a good idea to have one done

try to get the one where they wire you up and you wear the gear at home as many find it impossible to sleep in hospital = and you have to lug all your essential survival equipment into hospital for  one night which is a pain - us the trip in will exacerbate y
our OI/POTS and so interfere with your sleep.

Ask them what they are doing the sleep study for - if is  just to detect sleep apnea is It likely that you have sleep apnea?

Why I say this - I had  a sleep study which cam e back normal - when I saw another sleep specialist she said "I would not bother doing a sleep study on you because from what you tell me I don't think you have signs of sleep apnea" - she was right  - I did not

When I had my study I could not sleep so the techy said to take a sleeping tablet - which I did - and so I slept all night - then they said - slept well all night on the report - my problems are sleeping WITHOUT  a sleeping tablet - but they were only looking for sleep apnea.


EE


EDS & Sleep Disordered Breathing:

Sleep-Disordered Breathing in Ehlers-Danlos Syndrome: A Genetic Model of OSA

In patients with Ehlers-Danlos syndrome, abnormal breathing during sleep is commonly unrecognized and is responsible for daytime fatigue and poor sleep. These patients are at particular risk for SDB because of genetically related cartilage defects that lead to the development of facial structures known to cause SDB.

http://journal.publications.chestnet.org/Mobile/article.aspx?articleid=1725193


Link to full article pdf  https://www.researchgate.net/profile/Hsiao_Yean_Chiu/publication/255715805_Sleep-Disordered_Breathing_in_Ehlers-Danlos_Syndrome_A_Genetic_Model_of_OSA/links/542dfa810cf27e39fa95fc8e/Sleep-Disordered-Breathing-in-Ehlers-Danlos-Syndrome-A-Genetic-Model-of-OSA.pdf 



Upper Airway Resistance Syndrome (UARS)

People do not wake up one morning suddenly afflicted with obstructive sleep apnea. Rather, obstructive sleep apnea (OSA) is believed to be a progressive disorder that lies on the extreme end of a spectrum of sleep disordered breathing

What is the difference between UARS and OSA?

Causes of UARS are similar to OSA.

It can be caused by a naturally narrowed air passage, loose fatty tissues of the throat collapsing back into the airway, or the position of the tongue (falling back) during sleep.

Similar to OSA, the brain has to arouse itself from deeper stages of sleep to increase respiratory effort.

When the brain is constantly being aroused from the deeper stages of sleep, it's not able to perform other important tasks that it needs to complete so that you can feel refreshed in the morning.

This can lead to symptoms of chronic fatigue and excessive daytime sleepiness, which are also present in obstructive sleep apnea.

Patients with OSA are often overweight or obese (although they can be of normal weight), whereas patients with UARS are often of average weight.

http://www.alaskasleep.com/blog/uars-vs-osa-the-difference-between-upper-airway-resistance-syndrome-and-obstructive-sleep-



Sleep-Disordered Breathing

The measurement of esophageal pressure is the gold standard for measuring respiratory effort and is the only consistent measurement reported for the diagnosis of UARS

http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/pulmonary/sleep-disordered-breathing/


*****Many doctors do not preform nocturnal esophageal pressure monitoring (PES) as a part of a sleep study, but this can be very important for sleep related diagnosis in those with EDS. *****
« Last Edit: January 31, 2017, 10:24:46 PM by Ryan Ryder »

Ryan Ryder

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Re: TO SLEEP....
« Reply #3 on: January 23, 2017, 04:05:46 PM »
EDS & Sleep Disordered Breathing:

Sleep-Disordered Breathing in Ehlers-Danlos Syndrome: A Genetic Model of OSA

In patients with Ehlers-Danlos syndrome, abnormal breathing during sleep is commonly unrecognized and is responsible for daytime fatigue and poor sleep. These patients are at particular risk for SDB because of genetically related cartilage defects that lead to the development of facial structures known to cause SDB.

http://journal.publications.chestnet.org/Mobile/article.aspx?articleid=1725193


Link to full article pdf  https://www.researchgate.net/profile/Hsiao_Yean_Chiu/publication/255715805_Sleep-Disordered_Breathing_in_Ehlers-Danlos_Syndrome_A_Genetic_Model_of_OSA/links/542dfa810cf27e39fa95fc8e/Sleep-Disordered-Breathing-in-Ehlers-Danlos-Syndrome-A-Genetic-Model-of-OSA.pdf 




Upper Airway Resistance Syndrome (UARS)

People do not wake up one morning suddenly afflicted with obstructive sleep apnea. Rather, obstructive sleep apnea (OSA) is believed to be a progressive disorder that lies on the extreme end of a spectrum of sleep disordered breathing

What is the difference between UARS and OSA?

Causes of UARS are similar to OSA.

It can be caused by a naturally narrowed air passage, loose fatty tissues of the throat collapsing back into the airway, or the position of the tongue (falling back) during sleep.

Similar to OSA, the brain has to arouse itself from deeper stages of sleep to increase respiratory effort.

When the brain is constantly being aroused from the deeper stages of sleep, it's not able to perform other important tasks that it needs to complete so that you can feel refreshed in the morning.

This can lead to symptoms of chronic fatigue and excessive daytime sleepiness, which are also present in obstructive sleep apnea.

Patients with OSA are often overweight or obese (although they can be of normal weight), whereas patients with UARS are often of average weight.

http://www.alaskasleep.com/blog/uars-vs-osa-the-difference-between-upper-airway-resistance-syndrome-and-obstructive-sleep-



Sleep-Disordered Breathing

The measurement of esophageal pressure is the gold standard for measuring respiratory effort and is the only consistent measurement reported for the diagnosis of UARS

http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/pulmonary/sleep-disordered-breathing/


*****Many doctors do not preform nocturnal esophageal pressure monitoring (PES) as a part of a sleep study, but this can be very important for sleep related diagnosis in those with EDS. *****
« Last Edit: January 31, 2017, 10:24:15 PM by Ryan Ryder »