Hi Roz, If it had not been for the encouragement and this site, my equipment would have been on the curb waiting to be picked up with the rest of the trash azfter two days. It's been 13 months for me and I can't believe how the symptoms I was having, nightmares, waking up with roaring ears, and pounding headaches are but a bad memory.
I do take a very small dose of Ambien. I was an insomniac before I started CPAP--a habit from never being able to sleep more than 15 - 20 minutes at a time. So a pattern developed. Now I sleep about seven hours, maybe one potty break and I feel rejuvenated.
You have to try different masks, and different humidity settings. Eventually, you'll get the right combination. Good luck.
Hi Grannymac,
I read one of your posts somewhere else and I thought you must be an experienced hand at this. I didn't check the joining date :)
Anyway you sound like you've been through Hell, as have many of the others on here. I was thinking I have been hard done by, hosting big pity parties for myself BUT comparatively, I have been let off very lightly. It is good to hear people's stories because it helps get a grip on the self pity issues. Your story puts my situation on a kind of scale and makes me feel grateful that I wasn't worse when I was diagnosed. That's not much comfort for you but it has helped me see a lot and I thank you for that. I hope you do continue to improve and we can all enjoy the journey to better health together.
I'm a newbie, too! I posted under "success stories' - and gave a lot of background there. I'll just do a quick recap. Had a sleep study about 8 or 9 years ago and it was normal, so I was told. Didn't think anything of it. Then, about 4 years ago, started having problems with aspirant pneumonias (I have COPD and GERD, am on O2 24/7). An EGD started me on this dubious journey. I had 8 bouts in 8 months, 2004/2005; then 9 more bouts in 2007/2008 (just got home from my 5th one in 2008 a couple weeks ago). We were desparate to figure out why I'm getting these pneumonias, why the gaps. I've been vaccinated, and yes, it would seem out of almost 20 pneumonias, one would have been covered by the vaccine, unless they were ALL aspirant. Then, I began to think...what could cause aspiration at night? I already knew that I would wake up choking - sometimes just coughing, sometimes coughing and choking to the point were I almost got sick and then ended up with major burning feeling in my lungs (I knew that I had aspirated some stuff). I figured that with sleep apnea, I was probably waking up gasping, even if briefly. Stuff would still be introduced into my lungs - hence the pneumonias. I did a sleep study, which I failed - I even failed CPAP! So...we're doing bipap. I was put on bipap during last hospital stay and doc asked "did you have any reflux last night?" I said "do you really THINK that it'll happen IN the hospital??? G<>" I've now been on bipap for a week or so, and my daughter says I sleep quieter (not as restless) and faster - I've discovered that I fall asleep without sleeping pills - something that I had asked for a few months back due to the fact that I'd wake up multiple times during the night (and I'd KNOW I'd wake up!). I've cut back on eathing near bedtime, but still have to have a snack (diabetic) so I try to eat something high in carbs to cut back on bulk; I have a hospital bed, so my head is up. I've done almost everything short of sleeping standing up! I even cut back on pain meds...I was on equiv. of 600-700 mg. morphine/day; but had the medtronic pain pump inserted, and now have 8 mg/day over 24 hour period in spine (less systemic effects), so that potential is moot.
The longer I go without pneumonia, the more I'm figuring the bipap is working. The proof, as they say, is in the pudding. I was gold that I also have some central component to my apnea. What started the pneumonia, what's continuing it, why the major gaps (8 from 2/04-4/05, then none until 12/05, then none until 4/07, then none until 9/07, then 7 between 9/07 and 7/08. What started 'em, what stops 'em, if my eating habits or sleeping habits have NOT been changed, why skip all those months (hey, I'm not arguing! I'm just mumbling to myself). It's a true mystery - maybe one worthy of "medical Mystery (or whatever discovery health calls it)....no? At least one worthy of Sherlock! <G>
Hi GrannyMac,
Much has been written lately about vitamin D deficiency and infections. Traditionally vitamin D was thought to just prevent rickets, now they have discovered it does MUCH more. You may find the following article interesting, below find a link or two. I can also post many main stream medical links to other articles that have come to the same conclusion. In my own family, we have not had a single cold or flu outbreak since supplementing vitamin D. My father in law, aged 72, is married to a women who still teaches 2nd grade. Every year until now, she would bring home a cold from her classroom children and they would pass it back and forth between themselves for the remainder of the winter. Now they are both taking 4000iu vitamin D3 gelcaps daily, and have not had a single cold since. I just saw my father in law the other day, and I must say he was looking the best I have ever seen him, telling his jokes, laughing, animated, etc. My wife, who has asthma, in the past gotten severe bronchitics that settles in her chest with every cold, once it turned into pneumonia. Again, since starting the D3, not a single case.
The following link is a copy of an article written by some of the highest regarded researchers in the country about vitamin D, you can see the list at the end of the article.
Hi Neil,
Thanks for asking - I had a couple of really good nights and, heaven help me, I even started feeling..em...smug!! Big mistake lol. I had a rough one last night and I still feel dreadful most of the time.
However it's still not as bad as the first few nights with the nose mask. This mask has begun to leak quite a lot but if I strap it up much tighter my head will look like an hour glass..! I will need to try lots of masks and I have an appointment with my 'sleep girly' next week.
I know things will improve but it looks like being a much be a slower process than I thought. I must stop the expectations (2 goodish nights sleep - cracked it!!) - a wise person once said "an expectation is a pre-meditated resentment!"
I am still extremely depressed and at an all time low. I wondered what the wisdom about anti-depressants is? My Dr. wasn't keen to give me any as he said they increase sleepiness. Do you know? Does anyone else have any ideas?
lol....on what you said "if I strap it up much tighter my head will look like an hour glass..!". I got a major visual of a childhood cartoon figure with an squeezed head!
I think we all have a major elation in finally getting diagnosed with sleep apnea, what I mean is now we have a name for the condition that has been making our lives hell for years, and in our minds our problems are as good as solved once we use this little machine. There is no doubt CPAP therapy helps, especially if you wear the mask 8 hours each and every night. I know this is so important to me, if I slip and take a short nap on the couch without my mask I have a major headache, so it's important somehow to work through the anxiety and equipment issues to get around 8 hours a night on the machine. But often we also have other complex health issues that CPAP does not solve.
I can only speak for me (and my recent experiences with my wife's problems), my health issues have been slowly unpeeling like an onion. When I get one problem fixed it often unmasks another previously unknown one. Finally after getting down to the real root issues in the last couple of years, what I found with both of us...we both were in a bit of a funk, very low energy, very grumpy with each other, just plodding in life....was that both our major hormones were in the dirt. I mean so low I had the male hormones of a guy 95-105 years old. It's taken some time to treat them, but I am feeling much better.
My wife has a tough job as a manager at a major university in Los Angeles and a couple of years ago she could hardly get out of bed and get moving. When she saw I had such success with my hormone replacement (thyroid, adrenal, and guy stuff) she had hers measured too. Her levels of progesterone and estrogen, despite her age being just 46, were so low they could hardly measure them. She also had the beginnings of a thyroid disorder that eventually would have left her extremely low in thyroid. She is now doing great with bio-identical hormone replacement.
My doctor says half the men and almost ALL the women walking around that are 50 years old have one hormone or another that is really out of whack, and often it starts when people are in their 30's. He also says that 80% of the people that see him for depression (of any age) are hypothyroid. First he solves ANY and ALL hormones issues before going to prozac, lipitor, BP meds, and all the other bandaids that only treat symptoms. For example my wife's regular doctor wanted to put her on cholesterol meds and "watch" her thyroid, but once she actually took her thyroid with our other doctor, restoring it to youthful levels her cholesterol went back down also to her youthful level. Now don't get me wrong, these meds I mention above have their uses, but I honestly think hormones should be measured first. But it seems it easier for most doctor to just throw some of these cheap generic drugs at patients rather than do a complete hormone profile, physical, extensive patient interview and family history, etc.
Here is a link to at least get you started and you can decide if this is what you might have.
Oh Roz...If you can stay off the anti depressents please stay off them. Yes, they can make you tired but also, they are a nightmare to get off of...often months and months of major flu type symptoms and other stuff. This is not always...but for me..and some others I know it is. Almost a rebound effect.
Now for the mask and leaks. Ther eis an ear plug that is made form something pliable...and you can stretch, shape it and use it to help create a seal on your mask...several on here use it. For the SA life of me I forget what it is called.
I hate it when I speak too soon!!!! Counting my chickens before they hatch!
Thanks both of you Mrs. R Van W and Neil for the quick replies. I will certainly check out the advice for both short and long term fixes.
The hormone info is interesting. I am 51 and probably have none at all due to surgery????????
I used to be like an happy old lab sleeping in the sun! now I just down to the old lab part :)
Well just remember the euphoria you felt for the first two days. You CAN get that back. It will happen but the MOST important thing is do not give up!!
Many people have GREAT initial response only to be followed by a less than favorable response for a bit. It WILL get better. Don't give up and better days are just around the corner. Keep us posted we are here to listen and support. You have found a great group of people here on this forum.
_________________ ~ElleMarie~ One day at a time, ARE YOU KIDDING ME! Sometimes it's just a minute at a time.
I can put on a pity party with the best of 'em...you shoulda seen a post on another board...boy, was I in the thick of it! - and all for nothing.
Yes...the saying "I cried because I had no shoes until I saw a man with no feet" certainly applies, and it applies to me, as well...I'm quite humbled by all the posts I see here, and I realize I'm not as bad off as some of the others, and better off than some, but that's life. I'm determined to fight...and keep fighting. My lung capacity is 33%, but I'm slowly but surely getting exercise (rolling walkers are a godsend for those with breathing problems AND backpain! If you need one, ask for one - I did, and got it - they saw the logic of me being able to get up and out more and more - and indeed, I've been to our state capitol for lobby day, a days' country/western extravaganza downtown Detroit, the Race for the Cure here, and many, many more places...I use it when I'm walking and I'm goIng to start mall walking soon.
have a friend who's in stage IV breast cancer - was dx'd late 'cause a doc said "you've got asthma" when she started having trouble breathing without an xray (docs that dx asthma without an xray should be shot...if the person has cancer in their background, they should be drawn, quartered, then shot! <G> Just visited another friend who's hubby died suddenly a few years ago from a heart attack, and she had surgery for uterine cancer...fortunately, stage I, so that's great!
Oneway...I'll check that out! I'm on large doses of vit. d anyways due to osteoperosos - I have it, I'm on prednisone (an enemy of bones) and I'm truly in menopause (cancer treatment, ovaries out, etc.). The problem is...most of the pneumonias are aspirant (I inhale stuff that settles in my lungs and infects, much like a sink with water left in too long gets yucky), plus I'm on prednisone, a known immune suppressant, plus my immune system is only about half of what it was due to chemo (hypocellular bone marrow - occasional strike by all cells when I get sick), but...even with all that against me, I can try! I'll be more vigilant with Vit. D - I HAVE to!
Fri Jul 25, 2008 1:46 am
Mrs Rip Van Winkle
Joined: 08 Jun 2006
Posts: 1796
Location: Nature Coast, Florida
Yes Maria YES!!! Your memory is still there...that is it! Geekers...how come you still have a memory and I don't...does it getter better with age...like a fine wine?
I am on antidepressants and a mood stbilizer but that is because I suffer from B-Polar Disorder which mainly manifests itself in clinical depression. Without them I am not able to go to work and function! I thought my medicines were making me tired but when I have gotten good therapy from my C-Pap and had energy I now I think it was not my medicine but the OSA. I do not know for sure; perhaps with more C-Pap therapy I will be able to tell for sure. I know alot of peolple who take meds and everyone reacts differently to each medication. I have tried many and some did make me exhausted. Some people only need them for a short while for a situation. I had a rough time the first month of my therapy becasue I was not sleeping with the mask and was up late. If I do not get proper sleep I get depressed. I missed work; etc. It was not fun. It may be your just adjusting to this new thing and also the fact that you have to wear it makes you feel down like it did me. Now I take it one day at a time.
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