help please

shabbyshiksa · Post by **shabbyshiksa** » Fri Sep 01, 2006 12:49 am

i have been on cpap for 18 months...with little and mostly no relief...i am desperate because i am on a slippery slope...extremely depressed...take 6 hours to wake up...i only feel human after 5pm when the anxiety feeling smooths out if anyone know what i mean...is there anyone out there who can tell me what is happening...i almost don't want to move and that frightens me...i seldom go out...and more and more the times that i do go are getting fewer and further between...i am with kaiser so you know that is a long process and i am so in need of some kind words from someone out there who "feels my pain"...it is a starting point for me because i can't figure out what else could be wrong because the feeling has been unmistakable from the very first moment i experienced it...i woke up one morning in april of 2003 and felt like i was dead and since then i have never been freed of this feeling...on some level or other... please send some good news...thank you for your time and consideration...

chdurie2 · Post by **chdurie2** » Fri Sep 01, 2006 5:16 am

I can feel your pain. Although I have never felt it to the extent that you do, I sense that many of your symptoms are because you want to stay in the same place and not move forward. Hence, your need/desire not to go out or to take six hours to wake up or not have the anxiety subside until after 5 pm, when the day is almost over and time to get ready for another night.

I think cpap and what you are experiencing are two different things, although I don't know you. If you feel no/little relief from cpap, why have you been doing it for 18 months? I realize that apnea can be life-threatening, but it is not for all of us. Depends on your level. Since my level is not all that high, I speak from the point of view of someone who would not do it for 18 months if it did not make me feel better.

That said, you sound so depressed that it might be difficult to feel any physical benefit from cpap, so maybe it is good to continue it, even though you feel no/little relief.

It's going to sound paradoxical but you need to get out more and stop running from your anxiety. This is easier said than done when in your state. But you must push yourself. You have a number of things in place to avoid the anxiety but it is deadening you. Start slow and try to deal with a low level of anxiety. If you don't have a therapist, it sounds like you need to get one. Hopefully, pushing yourself to go out, wake up faster, etc will give you enough good experience that you will want to try it again. Start with a reason to go out that will be less threatening than some others to try.Then build on that. If you are not successful at first, keep trying.

Good luck.

Caroline

JCraig · Post by **JCraig** » Fri Sep 01, 2006 5:30 am

shabbyshiksa wrote:i am with kaiser

Ack, I definitely feel for you. If they are anything like they were back in the mid to late 80's they are evil incarnate and their people are not fit to practice veterinary medicine let alone treat humans. I actively detest that company. (Yeah, I have personal reasons...)

Anyway.

What is your untreated AHI (Apnea/Hypopnea Index)? Do you know? What pressure did they determine for you? Do you know that? You are legally entitle to a full copy of your sleep study -- GET IT.

As far as treatment not making you feel better, obviously there's something wrong with the treatment. xPAP does work, actually it can't NOT work because it's a purely physical thing, not a drug that can be rejected or whatever. But you have to have it setup right and clearly they haven't set you up right.

Luckily, this is one disorder that is easily self-treated! You just need to find a way to get your hands on an Auto machine with card and software so you can monitor things and adjust as needed. Now I'm sure Kaiser won't get you one (as I believe they want all their patients to die), so you'll have to find another way to score one. They come up used quite a bit. That's one avenue. There are others, and I'm sure someone here will post info on those.

There is hope for this condition -- luckily the treatment is well researched, very effective, and (for most people) very easy to deal with. You just have to get over the "hump" of getting the right setup, and possibly beating your insurance company into submission.

And like the other respondant said, yeah, you need to get out and do stuff and enjoy life some!

SpookyFodder · Post by **SpookyFodder** » Fri Sep 01, 2006 6:39 am

Hi there. Although I am new here I have been lurking this and other boards for a little while.

What you are describing sounds like the classic symptoms of depression. I like many others had been treated for depression long before I was diagnosed with severe OSA. Without getting into the whole OSA being misdiagnosed as depression debate I can honestly say at various points in the last 15 years I have been severely depressed. Like you I started to go out less and less and and I lost the the will and or ability to get daily tasks done. Its a horrible experience to say the least. For me, I'd get extremely tired (caused by the OSA no doubt) then get bummed out. Friends and family thought for the longest time I just lacked ambition, motivation etc etc. Truth is I was in serious trouble. Alienating myself only compounded it. I can absolutely understand where your coming from. It is a good idea to get out, get some sun and try to excercise any way you can manage. Take a walk do some gardening whatever. Seek help.

Depression as a medical illness can be primary (meaning it is the underlying illness) or secondary (caused by something else). Either way it is very treatable for the most part and you can save yourself a tremendous amount of suffering. Take the suggestions of the previous posters and adjust your OSA treatment so that it is effective and HANG IN THERE! I had all but given up finding a solution to the debilitating fatigue I have endured for over a decade then I was diagnosed with OSA. Have only been on cpap for about 3 months and have had mixed results myself.... having recently had the pressure upped from 7 to 9 but I can see the light at the end of the tunnel. There is hope. Good luck and take care. I hope your feeling better soon.

linda b · Post by **linda b** » Fri Sep 01, 2006 11:40 am

I just want to briefly ditto what the other posters have said. You sound like you are suffering from depression, which is VERY COMMON with sleep apnea. I don't know if it is a medical fact or not, but I believe the association occurs due to the oxygen desaturation most of us experience to some degree. And the worse the desaturation is, the more likely for depression to occur. I suspect after 18 months on CPAP that your pressure is not set right, you are mouth breathing and therefore negating the benefits, or there is another underlying medical condition that is causing some serious oxygen problems. You need to see your doctor right away and if he doesn't take your complaints seriously, then get another doctor!! Whatever you do, please do not give up hope. This therapy really does work. And there are allot of us on this forum that will support you as you go through the process.

So, see your doctor and keep us posted. We really do care.

kteague · Post by **kteague** » Fri Sep 01, 2006 1:20 pm

You have made the first step toward getting better by asking for "good news". That had to be difficult with the way you've felt for so long. May the victory of that first step, and the words of those who know that you too can get your life back, give you what you need to not stop now. While you have momentum, tell someone trusted that you are weary beyond words and ask them to help you work thru this. Either your cpap therapy is not therapeutic or you have other contributing factors. There are many sleep disorders, and it is not uncommon to have more than one. As others have said, continuing in what's not working is not in your best interest. With every new treatment your docs try, ask them specifically how long is reasonable to wait if you're not better, and put that date on your calendar. Good news? Many here who had thought their physical and mental health was irrepairably damaged have reclaimed their lives thru proper diagnosis and treatment. May you be the very next one.
Kathy

Maryb · Post by **Maryb** » Fri Sep 01, 2006 1:45 pm

Please talk to your doctor about getting medication for depression and anxiety.
These are disorders of your body biochemistry and need to be treated. Along with the CPAP treatment, medications will get you back on the road to health.
Hang in there,

Maryb

Offerocker · Post by **Offerocker** » Fri Sep 01, 2006 2:59 pm

Maryb wrote:Please talk to your doctor about getting medication for depression and anxiety.
These are disorders of your body biochemistry and need to be treated. Along with the CPAP treatment, medications will get you back on the road to health.

Maryb, your advice is good, but for those of us who are depressed/have clinical depression, "getting medicated for depression and anxiety" is not an easy task.
First, the RIGHT doctor is needed, then the RIGHT medication(s) for that individual, then waiting for side-effects.
Then being OK for years and having something trigger it again, either a slump, or the meds simply don't 'work' anymore. It can be HELL. It's so easy to stay 'down there', and extremely difficult to crawl out.

My advice is to be pro-active in any meds you get - investigate them, ask your doctor about side effects, half-life (how long it stays in your system).
Don't allow yourself to 'not care' about yourself or your surroundings...it can happen, but remember that it's just as hard correcting that as anything else, so be mindful, and do your best not to let it happen.

Work the hardest on your sleep.

Set a goal each day to get one thing done. (make it easy)
Do it.
That sense of accomplishment will be very important, so keep it up, and keep a notebook so that you can look back and feel better.

Remember that you know yourself better than any doctor.
Rely on the best doctor, and ask questions of them all.
Let your friends share in your fight, don't shut them out; you need the feedback from people who know and care about you. If there's no one in particular, keep in touch with us all here, we DO care; no one here will ever turn their back on you, as you'll find out. I'd cetrainly be lost without them.

Don't laugh at this, but turn on the music and sing. The continuous air flow really helps the breathing, getting more oxygen, and general well-being. Besides, it fights bugs. ..oh yeah, keep your sense of humor too.
Good luck, or make your own. We have some of the ingredients here - stick around!

kavanaugh1950 · Post by **kavanaugh1950** » Fri Sep 01, 2006 3:35 pm

HI, I HAVE BEEN THERE! HAVE YOU SEEN A GOOD MD? I WS SO TIRED AND TOLD THAT I HAD CHRONIC FATIGUE SYNDROME BUT WHAT I REALLY HAD WAS A BLOCKED CORONARY ARTERY. I URGE YOU TO GO FOR A GOOD PHYSICAL AND A STRESS TEST TO RULE OUT ANYTHING ORGANIC THAT MIGHT EXPLAIN YOUR SYMPTOMS.IF THAT IS NEGATIVE THEN CONSIDER AN ANTIDEPRESSANT. HANG IN THERE WITH THE C-PAP THERAPY IT WORKS. PAT

droyal · Post by **droyal** » Mon Sep 04, 2006 11:09 pm

Shabbyshiksa,

We do understand what you are feeling and many have experienced what you are experiencing. This is not to take away from your uniqueness, but just to let you know that others have been where you are, and even worse (if you can believe it).

As kavanaugh and so many have found, a high number of cases are diagnosed as psychiatric, when in fact the individual was just sick, in one way or the other.

Everyone, including the makers of psychiatric drugs, agrees that psych drugs can have powerful side effects, some of them quite serious, so taking them unnecessarily is to be avoided. The first thing to do is to make sure you are not suffering from a physical illness, by getting a very, very thorough physical examination and INSISTING on though investigation of the sources of your difficulties (don't let someone just give you a pill, to calm you down and shut you up!).

No matter how bad it is, or how impossible it seems, the way out is to gradually, step-by-step, take responsibility for your own condition.

On this site, you see individuals who have come to realize that the real way to improvement is to take responsibility for their own treatment. Now, when you are really down, that can look like a very tall order. And, it can be. In fact, it can be overwhelming to try to think of handling all your problems at once.

The secret is to find one small thing that you can take responsibility for and do that thing. Then, you find something else that you can take responsibility for, and you take care of that thing. It might be taking out the trash everyday. It might be taking out the trash once a week. It might be MAKING yourself make one phone call a day to someone you know. It does not matter how small it is.

Along that line, as an earlier poster commented, getting your sleep apnea handled is very important. You need to grab the bull by the horns and MAKE the system work for you. Yes, when you are feeling really down, you can say, "I don't have the energy." But, you know, somewhere, you actually do. And, in any event, you need to make sure that you are moving towards getting enough rest. Your first task might be finding a respiratory therapist who can work with you. But, notice, it is YOU finding that person, and MAKING the system work.

In addition to getting a good respiratory therapist to help with your sleep apnea routine, and in addition to getting that thorough physical work up, when identifying the "one small new thing" you can tackle, I suggest you consider adding one of these, then, at a certain point, two, and then all three:

1. Take a walk each day. You can start with five minutes. Don't get the idea that you will, at first, necessarily have great enthusiam for this. If you have to MAKE yourself do it, that is what you do. IGNORE any feelings about not doing it. Realize they are not your friend, they are your enemy. Add a minute a day, working up to one hour (skip a day, once every week or so, if you feel you need to). When you are doing that walk, keep your head up and look around. Notice things.

2. Write a note to someone each day. It can be three sentences long. When you run out of people to write to, which could happen in a few days, write to people you have not spoke to in some time (search around for addresses, on the net or via people you know) "Hi, how are you doing. I have not spoken to you in two years and was just thinking about you." Ignore the fact that you can feel like an idiot, writing someone you have not spoken to in ages. If you run out of people to write to, write a note to the editorial page of your local newspaper, write a note to magazines you used to read, etc.

Ignore the fact that this can seem crazy to you. The idea is to reach out and to CONNECT. You continue to do this no matter how you feel, while doing the first part of the program, getting physically well.

3. Go on the net and find some volunteer work to do: Find someone, or some group to help, at least once a week. DOING GOOD is a good thing.

After a while, YOU write YOUR OWN program. It can be simple. You write a program of things you want to handle, improve, accomplish, etc.. Then, as above, you figure out one simple thing you can do to move forward on the program, and you do that. Then the second simple, easy thing. Then the next. You can't solve everything at once. But, you can do one small thing at a time, and one day, it will all be resolved.

Best,
David

Offerocker · Post by **Offerocker** » Mon Sep 04, 2006 11:21 pm

shabbyshiksa

Where are you?

How are you?

Please let us know!!

p.s. Set up a profile - that way you can PM others, and they you.
We do not want to lose touch with you...
many of us have been through some of what you have been.

SpookyFodder · Post by **SpookyFodder** » Tue Sep 05, 2006 5:58 am

....... a high number of cases are diagnosed as psychiatric, when in fact the individual was just sick, in one way or the other

I Know you mean well but I'd like to respectfully point out that clinical depression is an illness just like OSA. One is a mechanical malfunction causing an obstruction to the airway. The other is a mechanical malfunction causing an upset in the balance of the neurotransmitter serotonin.

In any case do hang in there and please let us know how its going. YOU ARE NOT ALONE.

P.S. I am on the new beta window Vista using IE 7 beta and had some troubles posting so if I have double posted my apologies.

Guest · Post by **Guest** » Tue Sep 05, 2006 7:29 am

SpookyFodder wrote:
....... a high number of cases are diagnosed as psychiatric, when in fact the individual was just sick, in one way or the other
I Know you mean well but I'd like to respectfully point out that clinical depression is an illness just like OSA. One is a mechanical malfunction causing an obstruction to the airway. The other is a mechanical malfunction causing an upset in the balance of the neurotransmitter serotonin.

In any case do hang in there and please let us know how its going. YOU ARE NOT ALONE.

I'll add to that excellent comment: the brain functions on chemicals,
neurotransmitters, each of which alters the chemicals to the next neurotransmitter, etc.
We with an imbalance of any one or more of those are at the mercy of a neurologist &/or psychiatriast. There's not even a test! Trial and error, gearing up on any given med to level of tolerance (if you're lucky), then maintenance. If not, gear down again & try another. That in itself is enough to drive one off her/his rocker, or perceivably nuts.
It's very difficult to 'tell' anyone else what to do, especially that we're all different, and we ourselves aren't functionally as we'd like at ALL times. We DO have our special capabilities that are inherent, and try to hold on to those.

Hold on! Hang on! As I said previously, pick your doctors wisely. Not all of them LISTEN. Some just go down the list of meds 'most likely, and force YOU to adapt. I could go on, but I'm sure you'd rather I didn't. Need to go now anyway.

I'd love to go to a mechanic and get hooked up to a 'diagnostic machine' and be given a list of things to do/not do take/not take!!

Stick around, please.

shabbyshiksa · Post by **shabbyshiksa** » Sat Sep 09, 2006 10:35 pm

tried to respond since last night but couldn't do it...being so depressed it was a chore for me to get to this point...baby steps is all i can handle right now...each and everyone of your responses has touched my very soul in so many different ways...as an accumulation of humans who care...i did feel surprise that there were more respondees and that one was very clear that i needed to respond...and then i read all the posts and saw clearly for the first time that several different people from all ways of life were able to understand as no one else i know does...you have to feel depression to know it well...i tire now and besides i am watching henry the eighth and it is so wonderful...talk to you all soon...stay in the light.....

birdshell · Post by **birdshell** » Sun Sep 10, 2006 9:56 pm

droyal wrote:Shabbyshiksa,

We do understand what you are feeling and many have experienced what you are experiencing. This is not to take away from your uniqueness, but just to let you know that others have been where you are, and even worse (if you can believe it).

As kavanaugh and so many have found, a high number of cases are diagnosed as psychiatric, when in fact the individual was just sick, in one way or the other.

Everyone, including the makers of psychiatric drugs, agrees that psych drugs can have powerful side effects, some of them quite serious, so taking them unnecessarily is to be avoided. The first thing to do is to make sure you are not suffering from a physical illness, by getting a very, very thorough physical examination and INSISTING on though investigation of the sources of your difficulties (don't let someone just give you a pill, to calm you down and shut you up!).

No matter how bad it is, or how impossible it seems, the way out is to gradually, step-by-step, take responsibility for your own condition.

(snip)

The secret is to find one small thing that you can take responsibility for and do that thing. Then, you find something else that you can take responsibility for, and you take care of that thing. It might be taking out the trash everyday. It might be taking out the trash once a week. It might be MAKING yourself make one phone call a day to someone you know. It does not matter how small it is.

(snip)

You need to grab the bull by the horns and MAKE the system work for you. Yes, when you are feeling really down, you can say, "I don't have the energy." But, you know, somewhere, you actually do. And, in any event, you need to make sure that you are moving towards getting enough rest. Your first task might be finding a respiratory therapist who can work with you. But, notice, it is YOU finding that person, and MAKING the system work.

In addition to getting a good respiratory therapist to help with your sleep apnea routine, and in addition to getting that thorough physical work up, when identifying the "one small new thing" you can tackle, I suggest you consider adding one of these, then, at a certain point, two, and then all three:

1. Take a walk each day. (snip)

IGNORE any feelings about not doing it. Realize they are not your friend, they are your enemy. Add a minute a day, working up to one hour (skip a day, once every week or so, if you feel you need to). When you are doing that walk, keep your head up and look around. Notice things.

2. Write a note to someone each day. It can be three sentences long.

(snip)

Ignore the fact that this can seem crazy to you. The idea is to reach out and to CONNECT. You continue to do this no matter how you feel, while doing the first part of the program, getting physically well.

3. Go on the net and find some volunteer work to do: Find someone, or some group to help, at least once a week. DOING GOOD is a good thing.

After a while, YOU write YOUR OWN program. It can be simple. You write a program of things you want to handle, improve, accomplish, etc..

(snip)

But, you can do one small thing at a time, and one day, it will all be resolved.

Best,
David

David, with all due respect for your kind suggestions:

I suffer from depression. Yes, I truly suffer. I do not want to be depressed. I have sought help from 4 psychiatrists, now driving an hour and a half to a (finally) very competent one. I cannot really know how shabbyshiksa feels, even though I have major depression. I can only guess; and since I am not a psychiatrist, have not a clue as to how to manage her depression.

While your suggestions above (I snipped some text out for length) are very valid, they are not (IMHO) really appropriate treatment for a true brain chemical imbalance. Serious, major depression will incapacitate one so severely that it is impossible to do these things, much as one may wish to do so. I would say that your suggestions are very, very appropriate and helpful for situational depression. At least, they would not have been possible for me.

IF ANYONE WOULD LIKE TO READ MY STORY, PLEASE CONTINUE ON. IF NOT, SKIP DOWN TO THE TEXT BELOW THE LINE.

Yeah, well, I guess you do want to read my story if you are reading this. Here goes: I used to come home from work and lay down on the couch. I would turn on the TV, and the 11:00 pm news would come on eventually. I used to wonder where the time had gone! And, as a physical education teacher, I was on my feet for 6 hours a day moving and walking. I was contacting with people. Believe me, I was responsible for many things that were very hard for me to do. However, they were not taking my depression away but making it worse and worse.

It took me at LEAST twice as long to do the outside-of-the-gymnasium parts of my work as it should. I was often at school until the custodian kicked me out--say 2-3 nights a week. The other nights went as described at the beginning of this paragraph.

I slept every weekend away. In fact, after going onto disability I still slept way more than I wanted to: 12-14 hours per day. That is more than half my life, and there was NOT a way to function without enough sleep. I could only fight the need to sleep for a few days, and then had to make it up. This continued into treatment with medications; after my psychiatrist had done as much as he could (including Provigil), he suggested a sleep study.

It was not until I had appropriate medication and treatment that the ability to do ANY of the things you have suggested would even be possible. Much as I would WANT to do those things, time just seemed to get away from me. If not for automatic bill payments being deducted, I would probably be in an unheated and dark place and receiving eviction notices from the mortgage company. I would not be able to go anywhere because my car would have been repossessed, and probably no doctors would see me because I could not deal with and mail back payments for their bills.

The therapist who works with my psychiatrist suggested that I do some of the things you have suggested for shabbyshiksa. I knew in my deepest soul that I would be able to do so ONLY if something else changed. Try as I might, it was just so very, very hard to do them. Now I have started to do some of them, but I feel as if I am a juggler of about 500 balls and occasionally one will drop. Then I am more careful to avoid dropping that ball, but then a different one drops. This is repeated over and over. And, now I'm doing better.

I used to feel as if I were climbing a sand hill. Every step was hard, and my foot slid down through the sand. It was a scramble to try to climb any higher, if that was even possible. And, that was with treatment from the previous three psychiatrists.

Even with medication titrated (BTW, a few psychotropic medications can have levels evaluated via blood tests--I take 2 of them currently), it would have been impossible for me to have done any of your excellent suggestions UNTIL (drumroll please) my sleep apnea was treated. Believe it or not, even with mild apnea, CPAP treatment has made a 'subtle but significant change' in my depression. I've only been using it for about 4 and a half months, but slowly am seeing a difference.

The therapist seemed to think that I should be able to be more social and to connect more with others. Oddly, every improvement in my depression has been due to a change in medication or CPAP. HMMMM--I'm telling y'all, it was in my deepest soul that I knew this. Maybe that is because when one is crying due to life overwhelming one, it is VERY tough to socialize or to reach out and connect with new or old friends.

I have always been very social and very active. When the depression hit, I had to quit my singing and dancing, as well as my work on various boards of directors. I was deeply compelled to eat carbohydrates, and gained back all the weight I had lost. (I'd maintained my weight loss through 5 surgeries in a year with 2 major complications.) I also had finished all but one or two classes for an advanced degree, but could not take the testing, do the research, or write the thesis required. Thankfully, I have some very good and understanding friends whom I did not need to contact very often to continue as my friends.

It is my hope that anyone reading this will realize that I am trying to share my story to demonstrate major depressive disorders. These are true chemical imbalances. They can run in families; my brother is on permanent disability as he either does not respond to medications, has debilitating side effects, or is one of those who does not benefit from either short-term or extended electric shock treatments (ECT). I believe my grandmother had the same thing, but went untreated. She used to come to our home and cry for the weekend. It is very sad that she never received treatment, although it might have been very limited back then.
____________________________________________________________________

Shabbyshiksa, it is not for me to tell you what is wrong with your brain/body. It is only my place in life to share my experience and to hope that you will find some encouragement in the story. EVEN if you have to go outside of the Kaiser list of physicians (does your plan have an approved list), EVEN if you have to pay for it yourself, EVEN if you have to go to 18 psychiatrists--please keep at it. It is crucial for me to use CPAP; you may wish to take the advice of others to heart if it seems to work for you; and I'm thinking of you as you do your best to be your own advocate.

Just one final thought:

WHY IS IT THAT ONE MUST ADVOCATE FOR ONESELF WHEN ONE IS LEAST ABLE TO DO SO?????

help please

help please

Re: help please

Good News

thank you for all your kind words and encouragement...

Depression is Deep

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