CPAP not working-please help

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CPAP not working-please help

Postby Gail » Wed Jul 19, 2006 9:56 pm

Please help!! Have any of you not responded to CPAP treatment? I am about to go crazy. I had two sleep studies done in May and was diagnosed with severe sleep apnea (I had 47 an hour and my level on CPAP is 9). My insurance finally got my machine 6/2/06. I was so excited since I have been complaining of the symptoms for so long and now I finally had a diagnosis and an effective treatment. However, it is now 7/19 and I do not feel any better. I use the CPAP faithfully, even for naps. I've seen four doctors since I got the machine and they have no suggestions other than to give CPAP a chance. I teach kindergarten and I don't know how I can function next month. I'm going in for a third sleep study next week (my insurance co loves me). The center I'm using says to come back after using the machine a month. When I went in last week to see the sleep specialist doctor he acted totally surprised that I did not feel better. Does anyone have any suggestions? Thanks so much!!
Gail
 

Postby sleepyjean » Wed Jul 19, 2006 10:57 pm

Hi Gail. I'm sorry to hear that you are not feeling better. I know what high hopes we have when we finally have a diagnosis and seemingly a solution to our problems. Please be assured though that it is not uncommon for people to not feel better right away. If you read some of the threads here, you will see that the time it takes to feel the positive effects of CPAP varies greatly from person to person. Most of us have had OSA for a long period of time before we were diagnosed and we have a sleep debt to repay. Sleep debt is not just a term thrown around lightly, it is very real, and like any other type of debt, it sometimes takes a while to pay it off. I know it's hard, but that's where patience comes in to play. Try to see if there are any little changes in the way you feel. Sometimes it's baby steps at first, but once you add all of them up, you will be amazed.

Ok, now some suggestions and questions! Did your sleep doctor suggest that perhaps your level of pressure could be increased? Sometimes just a slight increase can make a big difference. You might also ask him if you could use an APAP at home for a week or two so he can get the readings from it to determine if you are indeed at your optimal level of pressure. That is exactly what happened to me. My original level was 6 and when I didn't feel better after a month, my doctor ordered an APAP for me to use on a trial basis for a week and when he received the information from it, it was determined that I actually needed a pressure of 10. I ended up with an APAP because during the week that I had used it I felt so much better, so when I asked my doctor if he would prescribe APAP rather than straight CPAP, he readily agreed. It sure beats having to go for another sleep study, so you might want to talk to him about it. I'm surprised that he wants to do another study so soon.

Do you feel that you are getting a good night's rest? No problems with mask leakage or discomfort? Do you wake up with a dry mouth which can be a symptom of mouth breathing and if you are doing that (without wearing a full face mask), the CPAP can't do it's job. Sometimes a change of masks can make a great difference. There are many different types from which to choose, and what works well for one doesn't work at all for another. Unfortunately it does seem to be a matter of trial and error.

Another thing that I've found to be extremely important is to make certain that I keep a regular sleep schedule, going to bed around the same time every night, including weekends, and getting up at the same time every morning. That is called sleep hygiene and it is something that my doctor stressed as being extremely important. I wasn't too sure how important this was until one night when I stayed up a couple of hours later than my new normal bedtime. I felt absolutely horrible the next day and have followed a strict sleep schedule ever since.

I hope some of these suggestions will be of some help to you. Hang in there, it will work, it just needs to be tweaked a little. When it does begin to work, you will be able to keep up with those kindergarteners with no problem! :-)

Take care, Gail. Keep posting and above all, don't give up. Once everything comes together you will see that it is all worth it in the end.

Good luck.

sleepyjean
"Don't be dismayed at good-byes. A farewell is necessary before you can meet again. And meeting again, after moments or lifetimes, is certain for those who truly love."


Beckham
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Postby Madre » Thu Jul 20, 2006 7:48 pm

Hi Gail,

I am so sorry that you are not feeling better yet. For some people it can take a bit longer than for others. For me it took several months for me to realize that I was indeed feeling better. You see it sort of sneaked up on me. One day I was out in the park with my children and I realized that I was playing with them and was not tired. I have to be honest though, up until that point I didn't really think that I was getting any better. I was sure that this treatment was not working for me.

I really think that it is a day by day thing and for some of us it happens so slowly that we don't even notice that we are indeed getting a bit better. I think that SleepyJean's idea about the Apap is a good idea as well. My own pressure had to be increased from an 11 not to 16. It just wasn't enough pressure at first. It is worth finding out.

Most of all, don't give up. I know it seems like a lot to get used to, but it will get better.

Good Luck
Madre
Believe in yourself--you are fantastic!!
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Location: Missouri

Postby lynn321 » Sun Jul 23, 2006 3:47 pm

to Gail
if you have any type of nose only mask, the mouth must stay shut when asleep or the CPAP can give no benefit at all
many of us tape our lips shut, some use a chin strap but these dont work for everyone
a very dry mouth with a nose only mask suggests mouth breathing
lynn321
 
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Chronic fatigue, hair-eating CPAP

Postby St. Remy » Tue Nov 07, 2006 10:48 pm

Two months ago, I was diagnosed with Chronic Fatigue Syndrome and part of the evaluation included a sleep study (though every single doctor I saw in the process said I probabl didn't have OSA because I am female, do not snore, am only slightly overweight and it was caused by the OSA) which found "grossly abnormal sleep," though it wasn't as gross as
some. I had 29 incidents an hour; no deep or REM sleep. Naturally they recommended the CPAP to start out. We have a stormy relationship - we hate each other.

I have two major problems: 1) similar to a posting I read today, by morning it is spitting at me and making noises in my ears like an old train; 2) the velcro head straps rub back and forth on my hair (which is halfway down my back), and the rubbing has caused hair mats that look like an old alley cat with long hair, and according to my hairdresser, are tighter than dreadlocks. I have lost three significant patches of hair due to the straps. I have tried a "do rag" that kids wear these days, but its ONE SiZE and is way too big for me. It causes the mask to move all over my face. Doesn't work!

About the spitting, someone on the Forum recommended changing the humidifier setting. We have found that unless I have it at 4 or 5, I get laryngitis. I sleep with my mouth open, and got a full face mask today to deal with this. I can hope this mask won't spit and make that horrible noise, but no one else seemed to relate to our experience. Everyone else has silence?

I have investigated other units and they all have velcro these days. The company I bought my machine from said they get complaints about the hair problem, but they had no ideas for preventing it. Has anyone else had this happen, and if so, did you find a satisfactory solution.

Next, l has anyone else had Chronic Fatigue Syndrome (CFS) prior to getting the CPAP, and does anyone remember about how long it took for the CFS symptoms to go away??? Fatigue is only one of the symptoms.

Oh, and I read about a Sheep skin covering for the hose. Does anyone know where I can get that? Is it one size fits all? Sorry about the long posting. I am new........

I look forward to hearing from my more experienced cohorts. Thank you in advance. Warmly, St. Remy (not the alcohol but the village in Provence)
St. Remy
 

When will it start working????

Postby St. Remy » Tue Nov 07, 2006 11:08 pm

Hi Gail,

I am new to posting tonight, but I read your's and thought "that was me until last week." You have gotten great advice from experienced OSA "susrvivors" ;D
but I can relate exactly to what you are saying. I was diagnosed two months ago, and if you read my post, you will see the problems I am having.

What I DID NOT write, because we tend to report only problems, is that one day last week, and today, I woke up early (but yesterday I slept until 3:30 p.m.!!!)
and I felt RESTED. My husband could see it in my face. I had gotten restorative sleep!! When it occurred the first time last week, I had profound feelings of
joy and happiness. It was the first time in years that I didn't feel like just "ending" it. I had no reason to get out of bed; I felt awful and slept all the time. My
Quality of Life was about a 1/2 on a scale of 1-10. I cannot tell you how wonderful it was. The next day I was a rag. But because I had a hint of what I could feel
like if all the variables were lined up properly, I was more motivated to keep the mask on (I tend to push it off or push the machine off the table in my sleep :evil:

This morning I woke up and I was rested again. I had a whole day to do things. It was sheer bliss.

So here is what I have to say - I don't think it will be a profound permanent change - I think there will be better days, then more of them, and as you get everything working
like it should for YOU, it will eventually work all the time (that is my hope anyway).

I mentioned that I am a mouth breather. The chin strap could hardly hold my strong jaw. Today I got a nose/mouth mask and I have hopes that this will ensure more air goes
down my airway and less out my mouth. This is an important one to evaluate. I didn't have dry throat but I had lalryngitis for five days.

I hope you post when you are having a day here and there. Best to you, St. Remy
St. Remy
 

CPAP NOT WORKING

Postby Kutztown07 » Fri Nov 10, 2006 4:48 pm

HI GAIL,

I STARTED ON CPAP 8/23/2006. I HAVE BEEN SLEEPING BETTER. BUT SINCE I HAVE ANOTHER MEDICAL PROBLEM WHICH ALSO AFFECTS MY SLEEP. FIBROMYALGIA. I STILL HAVE AROUSEL PERIODS WHERE I WAKE UP MANY TIMES AT NIGHT. I KNOW HOW YOU FEEL.

I WAS TOLD BY MY DOCTOR THAT IT WILL TAKE SOME TIME TO FEEL BETTER. IN MY CASE AT LEAST A YEAR. I AM BATTLING FIBROMYALGIA AND CHRONIC FATIGUE SYNDROME.
SO PLEASE HANG IN THEIR, YOU WILL GET BETTER.
Kutztown07
 

CHRONIC FATIGUE HAIR EATING CPAP

Postby Kutztown07 » Fri Nov 10, 2006 5:09 pm

HI ST. REMY,

IN MAY 2006 I WAS DIAGNOSED BY MY FAMILY DOCTOR WITH CHRONIC FATIGUE SYNDROME. AND WAS SENT TO A RHUEMATOLOGIST (SPELLED WRONG). SHE WANTED TO VERIFY FIBROMYALGIA. MY SPECIALIST SENT ME FOR A SLEEP STUDY AND WAS DIAGNOSED WITH MILD SLEEP APNEA, OXYGEN LEVEL DIPPED TO 89%. I STARTED ON CPAP 8/23/2006.
I HAVE BEEN SLEEPING BETTER, BUT STILL AM FATIGUED AFTER 3 MONTHS OF USING MY CPAP. I KNOW FIBROMYALGIA WILL BE WITH ME FOR THE REST OF MY LIFE. CHRONIC FATIGUE IS THE SAME WAY. YOUR SYMPTOMS WILL HAVE TO BE MANAGED.

I WAS TOLD THAT IT WILL TAKE AT LEAST A YEAR BEFORE I FEEL BETTER. I AM NOT SURE OF THAT SINCE I HAVE THE BRAIN WAVES OF FIBROMYALGIA. I HAVE A LOT OF AROUSELS THEY TELL ME. THIS CAUSES ME NOT TO GET INTO A DEEP SLEEP. LAST NIGHT, I WOKE UP AT LEAST 8 TIMES. THIS IS THE FIRST TIME THAT I DID NOT GET A GOODS NIGHT SLEEP. ARE YOU IN PAIN? CHRONIC FATIGUE CAUSES A LOT OF PAIN. MY PAIN HAS STOPPED. IF I MAKE IT TO 11/23/2006 IT WILL BE 3 MONTHS WITHOUT PAIN. THIS WILL BE THE FIRST TIME IN 10 YEARS THAT I DO NOT HAVE PAIN AT NIGHT. FOR WHICH I AM GRATEFUL.

I HAVE NO EXPERIENCE THE CPAP EATING MY HAIR. MY HAIR IS USUALLY MESSED UP FROM IT.
SO, I WOULD LIKE TO LET YOU KNOW I UNDERSTAND HOW YOU FEEL.
Kutztown07
 

CPAP not working & Chronic Fatigue & Fibromyalgia

Postby St. Remy » Sat Nov 11, 2006 4:05 am

Hi Kutztown07,

Well, we have identical symptoms/conditions. I have had Fibromyalgia off and on for about 25 yeas. When first diagnosed, my rheumatologist told me that the fibromyalgia was due to a SLEEP DISORDER. The treatment at that time was Elail to help you sleep. There was mention that ai had a sleep disorder, but there did not seem to be a treatment at that time - or he did not mention one.

I changed doctors after sleeping 16-19 hours a day for 5 years. My previous doctor observed very swollen feet, knees and hands and suggested that I slept wrong. :-x My new doc diagnosed the CFS, and said while I "didn't l ook like someone with sleep apnea, it would be good for me to have he test." I had 29 apneas per hour; I could not stay awake on the day test.
The sleep doc recommended the CPAP and I have had many difficulies with it.

Do I have PAIN?? Absolutely!! I have the standad trigger points that fibromyalgia patients have. I don't think you can have fibromyalgia without pain since the diagnosis is often based on pushing on a number of trigger points, and if they are painful, you have it. I also have chronic pain in my spine due to six surgeries for degenerative disk disease. But that is another story and only mildly relevant to this.

When I returned to my new rheumatologist, he suggested that I would begin to have reducd pain in the fibromyaliai locations. I already had somewhat reduced pain...though I am having diffiuclty with the CPAP, so it was inconsisstent I do not know if you are aware of one of the first studies that related fibromyalgia to sleep. It had o have been dsome 25+ years ago. The researchers selected atheletes who were practicallly Olympic-level. They had them go to sleep in their sleep labs. Every time one of the study participants went into either deep sleep or REM sleep, the researchers woke them up. The study was about a week long. Ater a certain time period, most, if not all, of the atheletes began to show symptoms of Fibromyalgia. So, we have hope that if we can get deep sleep & REM sleep, we will begin to sleep less, lose our fibromyalgia symptoms, and our Chronc Fatigue Symptoms.

Has a doctor told you that you WILL NOT get better? I would like to hear what you have been told. Please let me hear from you.
Warmly, St. Remy
St. Remy
Night/Day Sleep Study Gtwn.Univ.
29 apneas/hour; no REM; no deep.
Oxygen desat 90-84%
14 cm H2O pressure
Failed CPAP use
TAT oral appliance 8/13/07
St. Remy
 
Posts: 85
Joined: Tue Nov 07, 2006 11:36 am
Location: Washington, D C

CPAP and scalp HAIR LOSS

Postby St. Remy » Sat Nov 11, 2006 4:07 am

I just discovered that my hair is thinning significantly in the front of my ears...and maybe all over. I does not feel as full as it used to.
Has anyone else experiences this?????? :-x
St. Remy
Night/Day Sleep Study Gtwn.Univ.
29 apneas/hour; no REM; no deep.
Oxygen desat 90-84%
14 cm H2O pressure
Failed CPAP use
TAT oral appliance 8/13/07
St. Remy
 
Posts: 85
Joined: Tue Nov 07, 2006 11:36 am
Location: Washington, D C

CPAP NOT WORKING, FIBROMYALGIA & CFS

Postby Kutztown07 » Sat Nov 11, 2006 7:19 am

HI ST. REMY,

AS I UNDERSTAND IT, WE BOTH HAVE TWO PROBLEMS SLEEPING. ONE IS SLEEP APNEA AND THE FIBROMYALGIC BRAIN WAVES. THESE BRAIN WAVES WAKE YOU UP AT NIGHT MANY TIMES. THE DOCTOR RECOMMENDED "FIBROMYALGIA MEDICINE" HE CALLS IT. SO, I AM ON AN ANTI-DEPRESSENT WHICH HAS HELPED ME WITH THE PAIN. AND ALSO, I FEEL MORE RELAXED THAN EVER BEFORE. DID NOT KNOW THAT CHRONIC PAIN WAS AFFECTING ME. UNFORTUNATELY MY PAIN COMES OUT AT NIGHT IN MY HIPS, KNEES AND ANKLES. DON'T KNOW WHICH JOINT WILL EACH NIGHT. HOPEFULLY MY FIBRO. IS IN REMISSION, BUT I AM REALISTIC THAT IT WILL COME BACK AGAIN.

SINCE THE CPAP I DO SLEEP BETTER, BUT I NOTICED IF I HAD ONE NIGHT OF MANY FIBRO. ARROUSELS I SLEEP BETTER THE NEXT NIGHT.

AFTER I STARTED CPAP I NOTICED THAT I AN STILL TIRED ALL DAY, EVEN THOUGH I DO NOT FALL ASLEEP DURING THE DAY. SOMETIMES IT FEELS LIKE I HAVE TO FORCE MY BODY TO GET UP AND START MOVING AND ALSO THE STIFFNESS IS WITH ME ALL DAY.

I BOUGHT A BOOK CALLED "GOOD LIVING WITH FIBROMYALGIA" FROM THE ARTHRITIS FOUNDATION. THIS BOOK CONFIRMS PRETTY MUCH THAT THESE TWO PHYSICAL PROBLEMS CAN BE MANAGED.

THE DOCTOR COULD NOT GIVE ME A DEFINATE ANSWER THAT I WILL FEEL BETTER IN A YEAR.
AFTER RESEARCHING THESE TWO CONDITIONS I CAME TO A CONCLUSSION THAT IT IS SOMETHING THAT I WILL HAVE THE REST OF MY LIFE. THERE IS KNOW CURE AT THIS POINT FOR THESE TWO CONDITIONS.

HAVE A GOOD DAY,

KUTZTOWN07
Kutztown07
 

CPAP, FIBROMYALGIA & FCS

Postby St. Remy » Sat Nov 11, 2006 11:00 am

Hey, UTZTOWN07,

Tell me which Antidepressant they put you on?

Of course we are going to get depressed. Can't get restorative sleep, can hardly get out of bed, have little social life due to these pain
and having no energy. There is nothing wrong with it, either. About 1/3 of the American population gets depressed.

St. Remy
St. Remy
Night/Day Sleep Study Gtwn.Univ.
29 apneas/hour; no REM; no deep.
Oxygen desat 90-84%
14 cm H2O pressure
Failed CPAP use
TAT oral appliance 8/13/07
St. Remy
 
Posts: 85
Joined: Tue Nov 07, 2006 11:36 am
Location: Washington, D C

CPAP NOT WORKING, FIBROMYALGIA & CFS

Postby Kutztown07 » Sun Nov 12, 2006 7:12 am

Hi, St. Remy,

Sorry about the delay,

Cpap does work, lately been sleeping like a rock. But still get days when not feeling rested. Also, the doctor put me on effexor xr 37.5. A 24 hour pill. The pamplet from the doctors office says these pills work on the pain centers of your brain and helps you sleep. Although it is not a sedative. These pill brake the chronic pain cycle. Hopefully it wil continue working for me.
Now the only problem I am battling is exhaustion, have to try to reorganize my life in a way that I do one hard job, like raking the leaves which will tire me out.
Hopefully you will feel better soon.

Sincerely,

Kutztown07
Kutztown07
 

CPAP not w orking & depression

Postby St. Remy » Sun Nov 12, 2006 8:29 pm

Hi Kutztown07,

Actually, Effexor is a pain med at all; it is a Selective Serotonin Reuptake Inhibitor (SSRI). It has little to do with pain centers in the brain.
However, they are finding that another antidepressant, called Cymbalta, which is a Selective Serotonin & Norepindepherine Reuptake Inhibitor (SNRI),
is very effective on pain. I took Effexor and it mildly helped my depression, didn't do anything for my pain (but I didn't expect it to, nor did my doctor
since it really is not a pain med). When the studies about Cymbalta came out, my rheumatologist asked me if I wanted to try it, and I did. It markedly
reduced my depression, and reduced my pain by about 30%. Any reduction is a relief.

If you find tha the Effexor doesn't do much for your pain, you might ask your doc to try Cymbalta. The studies are very promising. Good luck. St. Remy
St. Remy
Night/Day Sleep Study Gtwn.Univ.
29 apneas/hour; no REM; no deep.
Oxygen desat 90-84%
14 cm H2O pressure
Failed CPAP use
TAT oral appliance 8/13/07
St. Remy
 
Posts: 85
Joined: Tue Nov 07, 2006 11:36 am
Location: Washington, D C

CPAP not working & medication relief

Postby St. Remy » Sun Nov 12, 2006 8:43 pm

Hi Kutztown07,

That is g reat. I have been taking an antidepressant called Cymbalta, which is, like Effexor, a Selective Serotonin & Norepindepherine Reuptake Inhibitor (SNRI),
and it is promising to relieve certain kinds of pain. I took Effexor and it mildly helped my depression, didn't do anything for my pain. Maybe it was because my doese was so low. I checked on the studies on Effexor & pain reduction, and the people who got pain relief were on 150 mgs. and up. I was on only 75 mgs. You will likely have to go up to get the pain benefits.


When I found my wonderful rheumatologists, the studies about Cymbalta had been out for about a year (the Effexor studies are newer)
my rheumatologist asked me if I wanted to try it, and I did. It markedly
reduced my depression, and reduced my pain by about 30%. Any reduction is a relief.

If you find tha the Effexor doesn't do much for your pain, you might ask your doc to try Cymbalta. The studies are very promising.

I find that I am sleeping 12-14 hours a day with the CPAP. I somehow thought that I would sleep less with the CPAP. Are you sleeping enormous number of hours????

If you get exhausted by doing one physical activity, it sounds like your CFS is still plaguing you. Do you think it is?? Good luck. St. Remy
St. Remy
Night/Day Sleep Study Gtwn.Univ.
29 apneas/hour; no REM; no deep.
Oxygen desat 90-84%
14 cm H2O pressure
Failed CPAP use
TAT oral appliance 8/13/07
St. Remy
 
Posts: 85
Joined: Tue Nov 07, 2006 11:36 am
Location: Washington, D C

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