Hi all been a member for a while since being diagnosed with COPD last year but have been ill/disabled for many years thanks to a rare genetic connective tissue disorder called Ehlers Danlos Syndrome (EDS) and this is me first post instead of lurking so please be gentle. LOL
OK the situation is that following what should have been a minor op to repair a rotator cuff tear almost exactly a year ago I suffered a very severe post op pneumonia which in turn led to the COPD diagnosis back then. I'm now 60 years old but feels more like 80 following this latest in a long stream of illnesses over the last 20 years or so.
Since then I had been becoming increasingly tired and finding my night and day had swapped over with insomnia at night and daytime sleepiness in the extreme and eventually received a diagnosis of complex sleep apnoea most likely thanks to my EDS adding extra floppiness in the tissues in my airwaves but also an autonomic dysfunction (common in EDS) adding central sleep apnoea's to the obstructive ones.
CPAP is working to reduce the overall numbers back to "normal" i.e. below 5 an hour but my sleep pattern remains the same with my day consisting of a series of 2-3 hour naps that don't ever reach the deep restorative REM sleep so essential to a normal life and I must admit I'm starting to be fearful of my ability to accept yet another limitation to my quality of life.
My question for you all is does anybody else have this sort of problem even using CPAP where they always end up only ever sleeping in 2 - 3 hour chunks rather than ever having a full decent nights sleep?
I think in my case the autonomic system that normally tells the body to go into the deeper stage of sleep after a couple of hours or so and the central sleep apnoea's also down to dysautonomia combine and my brain decides to send a wake up signal to my body instead of telling it it is time to dream, but this is just a guess.
What I want/need to know is anybody else share this problem and/or have a solution to it?
Thanks in advance for any help/ideas that you can come up with.
Peter aka "Sociable"
"Go placidly..be gentle with yourself..strive to be happy"
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Hullo, Sociable - I have read your post with interest. Unfortunately, I cant help at all, but appreciate that you need lots of advice. One of your problems is sleeping. That needs specialised advice - referral from your GP. Also do ring the BLF who also will help you.
I also use a CPAP machine which does as you say, reduce the apnoea events. But my system is determined I only sleep for three hours max, at any one time. I have Bronchiectasis and Fibromyalgia and I think my body doesn't know that night time is for sleep. I have tried all the usual ,hot milky drinks ,warm bath with lavender, relaxing tapes/cds,etc. But am still looking for anything which really works to get the refreshing sleep I need. Sorry I have no answers but hopefully hearing I am in a similar situation will help you as your post has helped me. That may sound odd but at least I feel that I am more "normal" as its not just me. Have you had the pressure of your machine checked? it could be that its not set right for you, we all need to persevere, I'm sure that life without the machine was even worse for my family before I had my machine.
Thanks Trish and sorry to hear you are going through the same sorts of problems but yes you are right it is a comfort to know one is not alone just knowing someone out there actually understands because they have the same experience really does help.
I was having a lot of problems with leaks during the first week of using the CPAP so they squeezed me in to do a refit of the mask and also adjust the max pressure on the machine down a notch or two which has helped a lot with the chest pains I was getting and since then I have also combined the CPAP with the surgical collar I use when my neck is particularly unstable and this combination is working brilliantly even though the messed up sleep pattern remains.
Welcome Peter, I suffer the same and have done for17 years, I have no answer. I had a CPAP but it was stopped after 12months.I am just permanently tired.
Well prior to the CPAP all I wore to bed was a smile but come to think of it at least on the beach at least I could pretend the new CPAP mask is a snorkel. ;o)
Far more cool than looking like an alien has attached itself to my face like John Hurt had in the movie of that name. LOL
Big thank you to all who have replied I will get back individually when my brain allows but apologise if it takes a while as I forgot to mention the other bit of "fun" linked to the same autonomic link with night time which is Cluster Headaches which I had put out of mind as hadn't had one for a month or so until this evening when the little rascals have decided to join the party.
Just have to love the ways our bodies seem to like playing such impractical jokes on us don't ya.
Basically they are a weird form of severe migraine but that follow a very characteristic pattern in "clusters" always at the same time usually during the night with maybe 4 - 6 episodes in a 12 hour period each lasting anywhere from 20 mins to 90 mins and also in clusters throughout the year usually at the same time of year as the problem is linked to the body clock and the part of the brain that tells us we have pain triggering what feel like having a whole day or even weeks worth of a bad migraine compressed into each episode.
As I'm sure you can imagine I truly hope this isn't the type you are getting but you have my sympathy on the waking up with a thumping head ones as well because I think many of us here do on a regular basis due to sleep deprivation in many cases.
I have just come out of Royal Brompton Hospital because I was still suffering with the insomnia and only sleeping in the 2hr chunks with the CPAP.....the same as you talk about.
It was found that I have weak breathing muscles as well as the apnea and the CPAP was not enough to help me. This was creating oxygen and carbon dioxide problems and was very fatigued and breathless during the day and night.....including headaches. I have a strange and very rare combination of Myasthenia and Neuro-Behcets Disease where one is a neuromuscular disorder and the other is a neuro-inflammatory disorder that has affect my brain stem, along with lots of other neuro symptoms and connective tissue problems.
I now have another machine called a Non Invasive Ventilator [VPAP]. This machine looks nearly identical to my other CPAP except it actually assists me in taking breaths. This gives me a rest from trying to breathe all the time.
I have only been back from hospital since Friday and although I am still sleeping in chunks, there is a definite big improvement in the way I feel.
Perhaps speaking to your specialist about this will help you as I know your condition can include muscle weakness and connective tissue problems.
Hope this helps as I know just how rotten this can feel....good luck
Everything you say makes perfect sense and I certainly will be checking out if the different type of machine might help but at the same time sorry to hear you are also going through the mill with more than your fair share of "optional extras" as I call my add-ons to my main medical condition.
It's also very interesting to see yet again the number of overlaps between all the various connective tissue disorders especially in terms of the neurological dysfunction they all seem to share.
As I mentioned in an earlier reply above I am now using my CPAP in combination with my rigid surgical collar and am sure as I can be that one reason this is working better for me is that it reduces pressure in my cervical spine especially at the very top where it forms the base of the brain stem as I suspect I may have a Chari type issue going on along with the known stenosis throughout my spine and think this might be part of what is helping reduce the numbers of central rather than obstructive apnoea's and this certainly fits what you have said.
Thanks again for all your help and all the best with your recovery from your latest "holiday" as I call my occasional inpatient stays.
Just wanted to say you guys are so brave. I don't sleep well and since getting out of hospital on Thursday I so exhausted during the day. I wake up a lot during the night but nothing like you. I am amazed that you cope with these horrendous probs! You put me to shame. M
Not brave so much as time allows one to adapt to pretty well anything eventually although the transition can be difficult keeping on keeping on becomes a way of life because it is the only option I guess.
The other advantage I have had is that my disability has come in the form of many small steps down with only an occasional fall off the ladder completely before finding my feet again so I have got used to accepting such change as just being part of life.
I'm guessing you are relatively new to this process so things will be harder for you to accept in that regard so don't be so hard on yourself and as I said in the tag line to my first post: "Go placidly..be gentle with yourself..strive to be happy"
If that doesn't help perhaps knowing that I also suffer "Man Flu" i.e the small niggly stuff tends to be what gets to me more than the bigger things which are actually easier to deal with in many ways precisely because they are so big. (hope that makes sense)
Often seem to find myself saying "me too" and this applies yet again as I also tend to grab at least one "normal" nap each day simply because its nice to be asleep AND comfortable. LOL
A "Me too" on the alarm system of wake up phone calls because everyone has got used to my falling asleep at odd times even though I know I need to be up and awake for a specific time.
Thanks for the letting me know I'm "normal" in these regards it really does help. LOL
Nice to hear from you Peter, and glad you had some great advice especially from Andrea. Pete has lots of problems with tiredness and is undergoing a sleep study but does not have the same problems as you. I do wish you well and hope your GP and others can help you in some way. I am sure a specialist can do something and good luck to you. xx
Many thanks for your kind words Sassy and please send my best to my namesake I hope the study leads to a suitable solution to Pete's problems and if nothing else he will at least hopefully know the cause of them.
I have read this post with interest I was in ICU with repository failure for 32 days, 12 of which I was in an coma 5 years ago I have also other problems that do not help my breathing. While I was in hospital and awake it was lucky if I slept more than 3 hours even with sleeping pills. I do now seem to have many episodes of waking up gasping for breath and am lucky to get 2/3 hours unbroken but not deep sleep and this has been for 5 years and is not improving but getting worse. My doctor does not seem overly concerned? but I get so tired
Offcut what a terrible ordeal you went through. During my many hospital stays I have met several people that have been in ICU but never anyone who had respiratory failure fo that length of time, think you sound pretty brave too. Are you on oxygen now? I only ask because before I was put on oxygen I often used to wake up gasping for breath but since I went on long term oxygen it hasn't happened.
WELL! When I am upright I seem to be more or less okay unless I bend over (Paralysed diaphragm) or walk. However I had my third Ablation ( Heart Procedure) 7 weeks ago. They did all there usual tests and put the usual monitors on and told me to lie down on the bed while they wait to take me into op room. I then set of their machines alarm as my O2 went right down. On went the mask and it popped back up to keep it quiet. The Ablation failed and to top off the day I had a femoral bleed because of the scar tissue from previous fiddling. After 4.5 hours they took the FEMSTOP off and was told to lay still for 3 more hours. I was on O2 the whole time and told to see my GP as they were concerned by the vast difference between upright to being flattish.
I had to see another doctor as mine was on his hols. So explained everything to him, for him to put a portable oxymeter on my finger while I was sitting next to him, it was fine? I mentioned that it was when I am flat but said "well its fine now anything else!" I did blow 300 on peak flow again while sitting. His closing words where "Speak to my cardiologist about it when I see him in October?"
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