HELLO TO YOU ALL OUT THERE,
COULD YOU PLEASE REASURE ME. I AM STARTING TO FEEL REAL DOWN HEARTED, I'M NOW ON DAY 13 AND TO BE HONEST I STILL FEEL EXACTLY THE SAME, WORN OUT, SHATTERED, KEEP NODDING OFF, ANYWHERE, ANY TIME. ANY PLACE. I WAS EXPECTING TO FEEL ALOT BETTER BY NOW, BUT I'M INSTEAD BEGINING TO FEEL VERY LOW, DEPRESSED, BECAUSE I FEEL NO IMPROVEMENT. MY HUBBY SAYS I'M SLEEPING MUCH BETTER, NO MORE NOISES, NO MORE STOPPING BREATHING, I'M ALSO NOT SHUFFLEING ABOUT QUITE SO MUCH, SO WHY NO IMPROVEMENT WHATS BOTHERING ME AS WELL IS THAT I HAVE TO SEE MY CONSULTANT ON THE 9TH FEBUARY & IF I'VE STILL NO IMPROVEMENT HIS HE LIABLE TO DEEM IT A FAILURE & TAKE THE CPAP BACK ALTHOUGH THEY TOLD ME MY OXYGEN LEVELS WERE VERY POOR,= 90 AT THE VERY BEST & 59/60 AT WORST, I STILL FEEL VERY DISPONDANT ABOUT IT. I HAVE A FULL FACE MASK, WHICH IS VERY COMFORTABLE, APART FROM A BLEEDING NOSE BRIDGE, IT'S NOT SORE, JUST NUMB, AND A RESMED S7 LIGHTWEIGHT CPAP. IS IT STILL EARLY DAYS YET DOES IT TAKE TIME FOR YOUR OXYGEN LEVELS TO REPLENISH I'VE HAD OSA FOR AT LEAST 5/6 YEARS UNDIAGNOSED. ALSO I HAVE MANY OTHER MAJOR PROBLEMS GOING ON + I AM HAVING TO TAKE A LARGE QUANTITY OF MEDICATIONS DAILY, COULD ALL OF THIS BE HAVING AN EFFECT PLEASE HELP PUT MY MIND AT REST. WHEN I READ THAT SOME OF YOU FEEL LIKE A NEW PERSON IN JUST 2 WEEKS, I JUST WONDER WHY I DO'NT I KNOW YOUR NOT DOCTORS BUT YOU DO OFFER SOME VERY GOOD ADVISE & I FEEL AT THE MOMENT I NEED IT THANKS TO YOU ALL. JEAN...
GETTING DISPONDANT!
12 posts
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jean19540_0
- Posts: 74
- Joined: Fri Jan 07, 2005 2:17 pm
- Location: nottingham uk
Jean,
Sorry to hear of your troubles. I too am in the same boat being a new user and not noticing any improvement. I started therapy about a month ago. The first week was a write off since the machine I rented was defective. The second week was not bad, but I was sleeping crazy hours because of the holidays, so I thought maybe I was still feeling tired because my sleep-wake cycle was screwed up. Then my mask became unbearably uncomfortable when like you, the bridge of my nose began bleeding at night (I since have switched to the PB breeze with large pillows and love it).
I'm starting to accept the fact that CPAP therapy is probably not the magic bullet that is going to solve all my sleep and energy problems. Obviously it is for many. many people. I suspect that for them, OSA may be the only thing preventing them from getting a good nights rest. Perhaps for those of us who don't achieve restful sleep with CPAP, there are other issues that need to be addressed.
I know for myself, for the 4 hours I actually slept in the lab, I had 70 respiratory arousals (OSA/Hypopnea and UARS which I am certain CPAP therpy will address), but another 70+ "Spontaneous" arousals. Spontaneous normally means of unknown origin, i.e. not related to respiratory events or periodic limb movements (RLS).
Assuming you have these types of spontaneous arousals, you should speak with your sleep doctor about what could be causing them. It could be such things as stress, depression, noise, pain, tinnitus, bladder and/or prostate trouble (for men), a noisy spouse, etc., etc..
If you have a competant sleep doctor, you may be able to get the help you need looking at each of these possibilities.
You should continue with the CPAP therapy, and if the mask is bothering you try something else. As already noted, I just love the PB Breeze with pillows. Also, is oxygen therapy a possibility in conjunction with CPAP ?
Depending on what meds you are taking, this could affect your breathing or have a residual affect of fatigue. Benzo's and certain anti-depressants are well know for causing daytime fatigue (drug hangover), and regretably are the most often prescribed long term for people with trouble sleeping.
Hang in there. You still may be one of the lucky ones who have a life changing experience using CPAP. It may be your body just needs more time. I've read some people take up to a year to feel fully back to normal.
Regards
Sorry to hear of your troubles. I too am in the same boat being a new user and not noticing any improvement. I started therapy about a month ago. The first week was a write off since the machine I rented was defective. The second week was not bad, but I was sleeping crazy hours because of the holidays, so I thought maybe I was still feeling tired because my sleep-wake cycle was screwed up. Then my mask became unbearably uncomfortable when like you, the bridge of my nose began bleeding at night (I since have switched to the PB breeze with large pillows and love it).
I'm starting to accept the fact that CPAP therapy is probably not the magic bullet that is going to solve all my sleep and energy problems. Obviously it is for many. many people. I suspect that for them, OSA may be the only thing preventing them from getting a good nights rest. Perhaps for those of us who don't achieve restful sleep with CPAP, there are other issues that need to be addressed.
I know for myself, for the 4 hours I actually slept in the lab, I had 70 respiratory arousals (OSA/Hypopnea and UARS which I am certain CPAP therpy will address), but another 70+ "Spontaneous" arousals. Spontaneous normally means of unknown origin, i.e. not related to respiratory events or periodic limb movements (RLS).
Assuming you have these types of spontaneous arousals, you should speak with your sleep doctor about what could be causing them. It could be such things as stress, depression, noise, pain, tinnitus, bladder and/or prostate trouble (for men), a noisy spouse, etc., etc..
If you have a competant sleep doctor, you may be able to get the help you need looking at each of these possibilities.
You should continue with the CPAP therapy, and if the mask is bothering you try something else. As already noted, I just love the PB Breeze with pillows. Also, is oxygen therapy a possibility in conjunction with CPAP ?
Depending on what meds you are taking, this could affect your breathing or have a residual affect of fatigue. Benzo's and certain anti-depressants are well know for causing daytime fatigue (drug hangover), and regretably are the most often prescribed long term for people with trouble sleeping.
Hang in there. You still may be one of the lucky ones who have a life changing experience using CPAP. It may be your body just needs more time. I've read some people take up to a year to feel fully back to normal.
Regards
Last edited by Hugh Jass on Wed Jan 12, 2005 9:48 am, edited 1 time in total.
Jean,hang in there.It could be that all of your other problems are contributing to your lack of sleep,or not feeling well.Your consultant might offer solutions for you.
I felt very energetic for about 2 weeks(started using cpap September 2004),now I feel ok,but I'm not falling asleep talking to people or driving,so I know I am better.
Marie
I felt very energetic for about 2 weeks(started using cpap September 2004),now I feel ok,but I'm not falling asleep talking to people or driving,so I know I am better.
Marie
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Guest
Feeling Better
Good luck, Jean! Others will reply with their good advice I am sure. I just wanted to assure you that you are not alone. For me, feeling better on a CPAP was a slow and gradual process. Not only do human bodies respond differently to illnesses and physiological stressors in general, but it seems that it also takes us varying amounts of time to heal from our sleep disorders. To the best of my knowledge, no one has even had their CPAP machines deemed a failure in such a short period of time as you had mentioned---precisely because some of us need months to pay down our accumulated sleep debt, and heal in general. The one exception to the previous statement might be those patients who refuse to use their CPAP. I believe four hours per use each night is a goal that some insurance companies look to for ascertaining CPAP compliance. Also, be aware that sleep can at first be a little worse on CPAP than without, as many of us need to gradually acclimate to the added sensory stimuli of mask, pressure, and machine noise at night----as well as the worry issues that can be somewhat intense when an OSA diagnosis and its associated therapy are brand new issues in our lives. You're not alone by any stretch of the imagination, Jean.
So don't worry. CPAP therapy is a nine inning ball game and you're only in the first half of the very first inning!
With that said, do make it a point to work with your doctor and the therapist who issued your CPAP on issues like that sore on the bridge of your nose, comfort issues in general, possible pressure changes or necessary re-titrations, etc. You should be able to tell them what bothers you, what does or doesn't seem to work, and it is their job to help you along the way. And, of course, you always have your fellow patients here to look to for both support and assistance. They will be able to give you pointers like: "Make sure you're not losing massive amounts of air through your mouth" which is a common CPAP therapy pitfall.
Good luck!!!
So don't worry. CPAP therapy is a nine inning ball game and you're only in the first half of the very first inning!
With that said, do make it a point to work with your doctor and the therapist who issued your CPAP on issues like that sore on the bridge of your nose, comfort issues in general, possible pressure changes or necessary re-titrations, etc. You should be able to tell them what bothers you, what does or doesn't seem to work, and it is their job to help you along the way. And, of course, you always have your fellow patients here to look to for both support and assistance. They will be able to give you pointers like: "Make sure you're not losing massive amounts of air through your mouth" which is a common CPAP therapy pitfall.
Good luck!!!
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Nenetx2004
- Posts: 144
- Joined: Thu Nov 11, 2004 1:01 pm
- Location: Albany, New York
Jean,
I've been on CPAP since November. I seem to be more rested on the weekends than I am during the week. Of course, this may be due to work (I'm starting a new job soon) and a heavy teaching/workout schedule at my karate school. I've had good days and bad days.
It seems that for some people the therapy works very quickly for them. For others it takes longer. I met a man at a party who said that it took him almost 2 years to adjust. My sleep partner has noticed that I am not snoring and he has not heard me stop breathing during the night (I think he's still a little hyper-vigilant about my sleep habits ). Keep up the therapy and as others have said keep your doctor and your respiratory therapist in the loop on issues.
Good luck.
Jeanne
I've been on CPAP since November. I seem to be more rested on the weekends than I am during the week. Of course, this may be due to work (I'm starting a new job soon) and a heavy teaching/workout schedule at my karate school. I've had good days and bad days.
It seems that for some people the therapy works very quickly for them. For others it takes longer. I met a man at a party who said that it took him almost 2 years to adjust. My sleep partner has noticed that I am not snoring and he has not heard me stop breathing during the night (I think he's still a little hyper-vigilant about my sleep habits ). Keep up the therapy and as others have said keep your doctor and your respiratory therapist in the loop on issues.
Good luck.
Jeanne
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Janelle
Jean, read the side-effects of any medications you are taking. Do they list insomia, drowsiness during the day, fatigue and the like? Could be some of your symptoms are from the meds. This is not to say to stop taking them. If you have to absolutely be alert during the day there is an alertness drug especially for SA called Provigil. It works but does not keep you from getting to sleep at night.
As someone else said, 5 years of Sleep Defecit is going to take its toll and will take your body a long time to recover from. Someone suggested taking liquid Vitamin D or to get lots of sunshine as this seems to help the fatigue as well.
I still get drowsy driving sometimes, but usually only if I have not slept well the night before and have had a very hectic day.
One way I have been able to tell if I slept good the night before, no matter how many hours, is if I have that uncontrollable urge to "stretch like a cat" when I first get up. You don't do that with a bad night's sleep. Instead you king of crawl out of bed and drag yourself to the bathroom.
I've been on CPAP for about a month and I am feeling a slight improvement, not like some with instant tons of energy, but I'm not sure how long I've had this condition, and I have lots of other things disturbing my sleep too, like back pain, shoulder pain, heel pain.
When they download the reesults of your first weeks, it will tell them what your oxygen levels are now compared to earlier as well as what other improvements you've made. it may turn out too, that if you are on a straight CPAP you need more pressure to feel better.
Good luck, and have faith that eventually you will feel better. By the way, depression is a sign of sleep apnea too.
As someone else said, 5 years of Sleep Defecit is going to take its toll and will take your body a long time to recover from. Someone suggested taking liquid Vitamin D or to get lots of sunshine as this seems to help the fatigue as well.
I still get drowsy driving sometimes, but usually only if I have not slept well the night before and have had a very hectic day.
One way I have been able to tell if I slept good the night before, no matter how many hours, is if I have that uncontrollable urge to "stretch like a cat" when I first get up. You don't do that with a bad night's sleep. Instead you king of crawl out of bed and drag yourself to the bathroom.
I've been on CPAP for about a month and I am feeling a slight improvement, not like some with instant tons of energy, but I'm not sure how long I've had this condition, and I have lots of other things disturbing my sleep too, like back pain, shoulder pain, heel pain.
When they download the reesults of your first weeks, it will tell them what your oxygen levels are now compared to earlier as well as what other improvements you've made. it may turn out too, that if you are on a straight CPAP you need more pressure to feel better.
Good luck, and have faith that eventually you will feel better. By the way, depression is a sign of sleep apnea too.
I felt awful for the first two weeks. I felt dizzy and tired when I got up. After that, I got used to the machine and have had only one problem with dizziness since then.
I've been using the machine for two months. I usually only get about three hours of sleep, but I am gradually feeling better. In the last two weeks, I've had a few days when I actually feel pretty good. It has taken that long.
Are you sleeping the entire night with your mask?
My understanding of apnea is this. (If I'm wrong, someone with more knowledge please correct me.) There are two problems that sleep apnea can cause. The first is that you don't get to the deeper levels of sleep. The second is that your oxygen saturation levels get very low.
If you sleep say four hours or more with few events, then you are getting more deep sleep, though you still may not be getting quite enough. But if you sleep without the mask the rest of the night, you may still have the problems associated with low blood oxygen saturation.
I've been using the machine for two months. I usually only get about three hours of sleep, but I am gradually feeling better. In the last two weeks, I've had a few days when I actually feel pretty good. It has taken that long.
Are you sleeping the entire night with your mask?
My understanding of apnea is this. (If I'm wrong, someone with more knowledge please correct me.) There are two problems that sleep apnea can cause. The first is that you don't get to the deeper levels of sleep. The second is that your oxygen saturation levels get very low.
If you sleep say four hours or more with few events, then you are getting more deep sleep, though you still may not be getting quite enough. But if you sleep without the mask the rest of the night, you may still have the problems associated with low blood oxygen saturation.
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eekerbeeker
- Posts: 11
- Joined: Thu Dec 16, 2004 8:57 am
Sorry to hear you are having so many problems. I think we have all been there in one way or another. I first started c-pap back in November. The first few nights were a nightmare. I was scared and cried for days. The nasal mask constantly leaked and I felt worse than I didi before also. I didin't know where to go for help. My husband and I got on the internet and found this website. I saw a few people talking about nasal pillows. I had no idea what they were or that I even had choices. My DME never told me. I called him up and tried them and they worked much much better. After about a month, I felt fantastic for about 3 weeks then the tiredness started coming back. I still don't get as sleepy as I used to before c-pap. I have good days and bad days. I'm able to sleep all night with the Breeze nasal pillows even thought I wake up a couple of times. I'm told it will take quite a while before I completely recover from the sleep deprivation and the only other health problem I have is high blood pressure. The cpap hasn't helped much with that so I am still on medication for high blood pressure. I really feel for you. Don't be afraid to try different interfaces. As you can tell by reading this website, what works for one, won't for another. I also started a regular exercise program. Nothing fancy. Just walking. You'd be surprised how much it helps with the anxiety and fear. I started out a couple of month ago just walking a few blocks a day. Now I'm up to 2 to 2 1/2 miles a day. I think that helped as much as anything I've done. There's no magic fix for all of this. Just hang in there and know that others are out there for you.
Jean,
Hang in there. I too have been new since October and am still tired. I am under the understanding that since lord knows how long I've had apnea, there is a sleep debt and it takes a while for that sleep debt to replenish. Sometimes as long if not longer than 6 months. I plan on hanging in. I did notice that my concentration is better. and that I have a little energy at certain times of the day like right first thing in the morning. I am sleeping through the night with no wakeups and my husband tells me that I am not snoring or breathing funny. I know it's going to get better, how long I don't know, it will get better. JUST HANG IN THERE!
Rested Gal, you tell her, reassure her!
Lynne
Hang in there. I too have been new since October and am still tired. I am under the understanding that since lord knows how long I've had apnea, there is a sleep debt and it takes a while for that sleep debt to replenish. Sometimes as long if not longer than 6 months. I plan on hanging in. I did notice that my concentration is better. and that I have a little energy at certain times of the day like right first thing in the morning. I am sleeping through the night with no wakeups and my husband tells me that I am not snoring or breathing funny. I know it's going to get better, how long I don't know, it will get better. JUST HANG IN THERE!
Rested Gal, you tell her, reassure her!
Lynne
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rested gal
- Posts: 12881
- Joined: Thu Sep 09, 2004 10:14 pm
- Location: Tennessee
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Miss Jennifer
WOW ! Am I glad I found you all! I am up right now specifically because - guess what - I cannot sleep! I know you all are shocked - but nonetheless, here I am. I have had a CPAP since the beginning of December and still not real pleased with the results - in fact, I'm rather disappointed with the whole mess. I had all but given up when I found these posts. Glad to know I'm not alone. I wonder why they don't tell us it will be this long a process when we sign up? I thought I would get the machine and then the next morning get up and do everything I hadn't done in the last couple of years because I was so tired! But, based on the advice listed, I'll hang in there and keep trying. P.S. I do recommend the pillows rather than the full mask - much more comfortable!
Think about this everyone who hasn't noticed anything? Tiny things may have occured and you just haven't noticed it.
1. Are you still snoring?
2. Are you sleeping through the night?
3. Has your concentration level gotten better?
4. How has your mood been lately? Still cranky?
5. Is there a time of day when you do have more energy?
6. Is your breathing still stopping when you do sleep?
7. How's your memory?
Remember it's the little things that help keep your spirits up. Can anyone think of anything else that gets better first?
Rested gal: LOL.
Lynne
1. Are you still snoring?
2. Are you sleeping through the night?
3. Has your concentration level gotten better?
4. How has your mood been lately? Still cranky?
5. Is there a time of day when you do have more energy?
6. Is your breathing still stopping when you do sleep?
7. How's your memory?
Remember it's the little things that help keep your spirits up. Can anyone think of anything else that gets better first?
Rested gal: LOL.
Lynne
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