Five months in and not getting anywhere

[chipbutty]

When I started on CPAP back in March I had really high hopes of soon getting back to my old self and finally getting some much needed rest and energy. I'd not been sleeping well for years and didn't know why. I tried just about every sleep remedy going and read all the books. Then last year I started to wake in the night sweating and my heart going like a steam train. You've all been there! I was shattered for months on end and fell asleep at every opportunity. It was something of a relief when they finally diagnosed me with mild/moderate sleep apnoea. I finally knew what was wrong with me and I could begin treatment. I had a six month wait from the original diagnosis in October 2007 to starting treatment in March. What a wait that was. So I was quite excited when I started out back in March and this forum has been a godsend when diagnosing problems and getting advice.

But I'm now feeling pretty down, demoralised and frustrated. I am still shattered, exhausted and moody. I feel just as tired as before I started CPAP. I probably have one reasonable nights sleep a week where I sleep for 5 or 6 hours solidly. I check my data every couple of days and I can see that CPAP is doing its job. My average AHI is 0.7. I just struggle to sleep. Leaks were an issue early on and I seem to be hyper sensitive to any leak and this wakes me up. Though some nights the leak rate graph is almost flat and yet I still waked up constantly throughout the night. I seem to be stuck in a vicious cycle.

Getting a comfortable mask has been difficult. The National Health Service here will fund three masks and after that you're on your own. That's the case where I live anyway. I'm now on my seventh (I think. I lose count ) mask. I currently rotate between the Quattro, Hybrid and Liberty. The Quattro has been good on a couple of occasions and the night before last I had a decent night. But last night I spent three hours trying to stop eye leaks and I couldn't for the life of me figure out what I was doing differently from the night before. I've given these three masks at least a solid month of use before trying something else. I tend to start out full of hope and indeed I will get a few decent nights with my new mask, then the cycle of waking and leaks starts again. This probably leads to more frustration and poor sleep anyway.

My sleep hygiene is pretty good. I have no trouble in getting to sleep. I have had insomnia in the past and I now know the importance of sleep hygiene; keeping regular wake/bed times, exercise, routine etc. As for exercise I do around 30 miles a week on my bike. That really is a struggle when I haven't been sleeping, but I feel better about myself after doing it.

I have all the accessories that us cpap'ers acquire. Let's see: Chin strap (I bought that right at the beginning when I realised I mouth leaked and I only had a nasal mask), Papillow and SleePap pillows ( neither of which I really like), pad-a-cheeks, tights (or panty hose as you call them in the US), medical tape (I should have shares in them), Hose Buddy, CPAP wipes, Dr Bronner's soap, Humidifier, KY Jelly , Lanolin, Macks's earplugs, Ayr Nasal Spray, Chin up strips. The list goes on.

I don't post on here that often, though I check up on here daily, but today I really felt the need to! I've been feeling desperate for the past month. I don't really know where to go from here. I contacted my sleep clinic and as they could see I was compliant and my leaks were under control all they could do was offer me another mask. I really don't know if another mask is the answer. What keeps me going is the memory of a magical three nights I had back in June when I slept well and felt so much better than I had in a long time. And last but not least my Dad's early death from heart disease. He also had untreated OSA. One thing I do know is that I don't want to give up on CPAP.

I wonder if I have other undiagnosed sleep issues or whether I'm just struggling to come to terms with all of this. After five months I'm disappointed that I'm doing so badly.

I know there's no simple solution to all of this but maybe I just can't see the wood for the trees and someone can offer me some sage advice.

[ozij]

I wonder if I have other undiagnosed sleep issues or whether I'm just struggling to come to terms with all of this. After five months I'm disappointed that I'm doing so badly.

I know there's no simple solution to all of this but maybe I just can't see the wood for the trees and someone can offer me some sage advice.

Thinking out loud:

You're on fixed pressure, so pressure changes are not an issue.
Are you using cflex? If yes, maybe you can stop it. If no, maybe you should start....

What is your Rxed pressure? Could it just be too high for you to have it on fixed and then bi-level may help your sleep be more restful?Have you tired moving it the minimal possible amount up, or down?

And yes, you may be having othe sleep issues: for some people, PLMs (periodic limb movements) appear only after their AHI is down to normal - those could be pretty destructive to you sleep.

Can you get another sleep study, this time with your cpap?

O.

[vdol52]

I've given these three masks at least a solid month of use before trying something else. I tend to start out full of hope and indeed I will get a few decent nights with my new mask, then the cycle of waking and leaks starts again. This probably leads to more frustration and poor sleep anyway.

Wow, sounds alot like my story. I will tell you the good news up front. I now sleep alot better as long as I do the things that I have found out by trial and error that work for me. I understand that there are many many types of sleep disorders, sleep apnea being only one of them. The mask leak thing is a problem but you said you average AHI is 0.7 so that is compliant.
And you are exercising alot, 30 miles of biking a week is alot better than most.

RECAP:
Sleep Apnea under control except for minor mask leaks that wake you up as you are hypersensitive
Exercise 30 miles a week. Great
You are on board with all the bells and whistles pertaining to sleep apnea

So, what is there left.

How about your diet. Sugar, caffeine are sleep busters for some people. Also food allergies or sensitivities can be the cause of sleep issues. Eat pleanty of fresh vegatables, fruit, whole grains (unless you are found to be sensitive) and moderate amount of protein, beans and lentils and organic is preferable when you can find it. I use Stevia and honey as sweeteners. Poor diets can lead to inflammation and inflammation leads to pain and or sleep disturbance.

My nervous system is hypersensitive due to heart valve regurgitation issues. There is a correlation between the autonomic nervous system and the heart. There is actually an name for it called Dysautonomia
I would check with my doctor and see if you are okay in that area. Dysautonomia is not life threatening, in fact it can be very benign but it is said to be lifestyle threatening. Google Dysautonomia and see if you fit the paramaters.
I use valerian root and passiflora at night and a homeopathic remedy called CALM in the early morning hours. I keep it under my pillow so I don't have to get up and be aroused.

Body Toxicity. I is important to do an internal cleanse peroidically. You can get these kits at any health food store. They usually contain a bowel and liver cleanse. Believe me, if you are toxic, it can affect your sleep big time.

Sex Hormones. I do not know if you are male or female but regardless low sex hormones can affect sleep in men and women.
There are alot of natural products that can help. I use a cream but many use bioidentical hormones.

Light. If you have a circadian rhythm disorder light may affect you. I use blockout drapes on all my bedroom windows, (look like a cave) and also sleep with a sleep mask. Beside my bed I have a lamp with a "low blue light bulb". This bulb will not activate the melatonin lowering process that wakes up up in the morning.

And last but not least STRESS! How are you doing in that area? Are you at peace with your spouse or partner if you have one? Do you have more on your plate than you can handle? Are there old issues in your life you haven't healed? This stuff doesn't just go away. There is something called "cellular memory stress". The body always remembers. It is a collection of all the stress, hurts, pain, etc. you've had in your life that you haven't released. It is actually what ages us. If you are open to this than there are many ways of healing. We all have them and they come up in our lives are we are able and willing to release them. When you are ready for this then you will be guided in the right direction for this work.

I know this is alot to digest, but you are asking so this is what has worked for me. I used to be stressed, angry, irritable, unhappy and I have to say that today I am blessed with a wonderful husband who adores me, a loving family and alot of friends who appreciate me. Life is very good and my sleep issues are improving all the time.

You have the power to change this and I am seeing you doing just that.
I hope something I have said helps because I have been in your place and it is no fun.

Blessings,
Victoria

[sharon1965]

chipbutty
i feel for you
i second ozij's suggestion that there may be underlying issues such as plmd or another sleep disorder (i, myself, being the overachiever that i am, have 3 separate sleep disorders ); i didn't begin medicating for severe PLMD till i had been on cpap for about 5 months; i also have extremely low ferritin levels resulting in low iron...have you had that checked out? or your thyroid? there could be any number of issues contributing to your feeling "shattered" (man, can i relate to that description!)

and victoria's suggestions about food sensitivities are very wise...

i've been on cpap for 18 months and while i know the cpap is doing what it can and should, the other stuff is really hard to manage; i know the importance of at least successfully treating my OSA while i continue to strive for better overall health, so for now i have to be satisfied that cpap is at least keeping me alive

i wish you the best in investigating the problem and i hope you will stay committed to cpap and to finding out if there is something else going on with you also

sharon
btw, chipbutties were my favourite thing growing up in ireland

[vdol52]

Hi Chipbutty and Sharon,

I just remembered this. My body temperature used to run low. I mean very low. Like 93-96 or average day. Since I am sensitive I could not take even armour thyroid because it caused me to have heart palpitations. Then I found Lugol's
Iodine Supplement. It has raised my body temp to normal and this in crucial for the body to process food and produce enzymes.
Also I use Black Strap Molasses on cereal for Iron supplement. It has a little bite but well worth it to feel better.

Hope this helps.
Victoria

[chipbutty]

Thanks ozij. Yes, I'm on fixed pressure. Initially I was on 10cm but I was having problems with aerophagia and I asked them to lower it to 9cm. That has helped a bit in that regard and it doesn't appear to have increased events.

I have my cflex set to 1. I did try turning it off some time ago for a couple of nights but maybe I will give that another go tonight and try it for a longer period. I haven't tried lowering or increasing the pressure, the sleep clinic would take a very dim view of that. They're already a little annoyed that I look at my own data I guess they wouldn't find out anyway. When I go in to see them they only ever look at the event and leak data.

Maybe another sleep study while using CPAP would be the way to go. I'm not sure to what extent my sleep clinic would carry this forward, they're actually a sub division of the Respiratory Function Unit, hence the SA treatment and diagnosis. But they must have contacts either at the hospital or somewhere else in the UK who can take this forward if I suspect something else is affecting my sleep. I don't think they tested me for PLM when I had my sleep study. I didn't have anything strapped to my legs, just an oximetre, a band around my chest and prongs up my nose.

I wonder if I have other undiagnosed sleep issues or whether I'm just struggling to come to terms with all of this. After five months I'm disappointed that I'm doing so badly.

I know there's no simple solution to all of this but maybe I just can't see the wood for the trees and someone can offer me some sage advice.

Thinking out loud:

You're on fixed pressure, so pressure changes are not an issue.
Are you using cflex? If yes, maybe you can stop it. If no, maybe you should start....

What is your Rxed pressure? Could it just be too high for you to have it on fixed and then bi-level may help your sleep be more restful?Have you tired moving it the minimal possible amount up, or down?

And yes, you may be having othe sleep issues: for some people, PLMs (periodic limb movements) appear only after their AHI is down to normal - those could be pretty destructive to you sleep.

Can you get another sleep study, this time with your cpap?

O.

[chipbutty]

Thanks for that Victoria

Caffeine. I like Coffee a lot but I never drink it after midday. My diet is pretty good, though I guess it could always be improved with more fruit and veg.

Dysautonomia. That sounds interesting. Over ten years ago my doctor suspected I had glandular fever. I had absolutely no energy for months and he said I had chronic fatigue syndrome. Though I recovered well and got into mountain biking soon after that to help with recovery.

I'm like you, I also have blackout lining on my curtains. I even wear earplugs! I tried taking melatonin a year ago but found it gave me a really bad hangover. It came in 3mg tablets. Probably too much. I have some Passiflora and Valerian. They're both quite subtle and I do take them occasionally. It's nice to have to hand when I wake up frustrated with leaks.

Stress. I'm currently not at work so that's at least one less thing to worry about at the moment. Though I've always been someone who worries about small stuff. I think I could do better in that department. So I'm always open to suggestions on how to improve worries. My only worry at the moment is being shattered, it's kind of all consuming at the moment.

Nearly forgot. I asked my GP to do a load of blood tests recently. I don't know what they were all for, I know one was for glucose levels. They all came back normal except for the liver result which was slightly elevated and he said it was nothing to worry about. The liver one was also elevated when they did blood tests back in 1994.


[quote="vdol52"][quote]

I know this is alot to digest, but you are asking so this is what has worked for me. I used to be stressed, angry, irritable, unhappy and I have to say that today I am blessed with a wonderful husband who adores me, a loving family and alot of friends who appreciate me. Life is very good and my sleep issues are improving all the time.

You have the power to change this and I am seeing you doing just that.
I hope something I have said helps because I have been in your place and it is no fun.

Blessings,
Victoria

[chipbutty]

Sharon - How was the PLMD diagnosed, is it something you were aware of or was it discovered during a sleep study?

I think my iron levels were checked when I had the blood tests done. My sister has thyroid problems so that's something else I'm adding to my list.

This is for you Sharon

[sharon1965]

chipbutty!!!
thanks for the sannie...i miss eating those lovely things, though i admit on occasion i have them at mom's !

my plmd was dx'd at my sleep study...i have a leg movement that happens continuously through the night, about every 17 to 30 seconds, which they figured causes arousals about 1/4 of the time; that on top of twitching and flailing, and i wasn't getting much sleep...i also have alpha wave intrusion due to fibromyalgia, so stage 4 sleep just doesn't happen for me

but back to the plmd: now that i'm medicated, if i forget or take it too late (or fall asleep on the couch) i am VERY aware of the leg movements, jolts and twitches

the plmd wasn't addressed by cpap, as it can sometimes be, so i take a very low dose of requip, which is a parkinson's med rx'd for restless leg syndrome and plmd

[WillCunningham]

I don't have many suggestions for you, but I did want to mention that heartburn/acid reflux/gerd can irritate the soft tissue in your throat that the CPAP is supposed to hold open reducing or removing it's effectiveness. That was a big discovery for me and made a very large difference after I started treating it. Hope it works out and you find your solution!

[Snoredog]

I'm on fixed pressure. Initially I was on 10cm but I was having problems with aerophagia and I asked them to lower it to 9cm. That has helped a bit in that regard and it doesn't appear to have increased events.

I have my cflex set to 1. I did try turning it off some time ago for a couple of nights but maybe I will give that another go tonight and try it for a longer period. I haven't tried lowering or increasing the pressure, the sleep clinic would take a very dim view of that. They're already a little annoyed that I look at my own data I guess they wouldn't find out anyway. When I go in to see them they only ever look at the event and leak data.

You lowered pressure to address aerophagia. That can allow MORE apnea to show up, it is the recovery from apnea where you take that DEEP breath that causes a problem with GERD, when you take that deep recovery breath it can suck stomach contents past your LES into the esophagus, allowing that apnea to persist prolongs the healing of the LES.

My suggestion:

1. Get some OTC PepcidComplete (only brand that works in my opinion), take one before bed.
2. Elevate the head of your bed by 3 to 4", use bricks, wood or anything under the legs of the frame.
3. Reprogram you machine to eliminate apnea, that means going BACK to original 10 cm pressure.
4. Setup a Ramp pressure of 7 cm for 45 minutes and use it every time you turn on the machine. This will be more effective
than lowering your overall pressure to 9 cm.
5. I have used Cflex since it was first released on a lot of different machines never seen it make AHI worse or make aerophagia worse, you have a problem falling asleep with pressure and leaks, use the features like Ramp and Cflex which make that easier. Use CFlex set at #2 setting, since we are bumping pressure back up to 10 cm, use the Cflex feature along with Ramp as noted above.

Aerophagia for the most part is only going to bother you when using the machine and you are awake, a time of rest where you are most likely NOT having an apnea. So use that lower available pressure when you are awake, you want it working when you are sleeping and having the apnea.

Use the above settings, when you turn on the machine pressure will go to 10 cm, press the Ramp button it will drop to 7 cm. In 5 minutes it will be at 7.5, in 10 minutes at 8.0, in 15 minutes at 8.5, in 20 at 9, at 25 at 9.5 and in 30 minutes it will be at your 10 cm pressure. So even setting it for 45 minutes you will only be getting a 30 minute ramp period before full therapy pressure is delivered.

You can start off at 6.5 cm if you want, that will only help the aerophagia and by the time you have gotten to sleep pressure will be higher or become more effective as ramp time expires.

Too bad you didn't know from your PSG what that 10 cm was found to eliminate. You may need a higher pressure than 10, I would reprogram and if you don't feel better increase the pressure to 11 cm but still use the Ramp and other settings.

Higher Pressure = greater noise = more leaks = problems with aerophagia

Using a PepcidComplete and elevating the bed have worked the best for me with aerophagia.

[vdol52]

Interesting about the glandular fever. I had some sort of fever when I moved to Florida in 1984 with a low grade fever and I was extremely fatigued. I had diagnosis of CFS as well.
 
 

[chipbutty]

Snoredog - Thanks for the suggestions regarding aerophagia. Since my pressure was lowered to 9cm I don't think there's been an increase in events. Nothing that stands out on the data but I'll double check. My AHI is currently at 0.7.

I'm not sure I understand the thinking behind using the ramp for 45 minutes compared to a reduction to 9cm all night. Helping to get to sleep? That would make sense but I generally don't have much of a problem getting to sleep, unless I struggle with leaks like last night. Since the reduction to 9cm the air swallowing has been less but I wonder if some of that is due to the change of pillow around that time. I changed to a Tempur contour pillow. The pillow is much lower and it stretches my neck.

I'll get some PepcidComplete. I think it's rebranded here as PepcidTwo.

I don't think the aerophagia is the reason for my continued problems but it's certainly another thing I've tried to address.

Another thing, and this has always confused me, does cpap induced air swallowing usually indicate GERD?

[painterman]

Someone mentioned a possible thyroid problem. There is a book at
http://www.amazon.com/Hypothyroidism-Ty ... 0975262408
that I would recommend you read. It is about hypothyroidism being an epidemic. I know that the symptoms that you have mentioned after 5 months are much the same as myself after more than a year of cpap. My sister in law recommended this book. I then started thyroid treatment and feel much better. The problem is that the basic blood test doesn't always tell the whole story. Todays doctors treat mainly from lab tests instead of the old fashioned way of treating symptoms. This book has helped me and 3 of my children. I would check into this.

John

[chipbutty]

I've just ordered the this book painterman. My sister has thyroid problems so it's worth looking into.