please help I am so desperate

[sleepyjane]

rooster,

Thank you so much for your suggestion. I was going to write the doctor letter prior to visiting but didn't have time so I printed the initial post I did here and some of the answers and took it with me to the sleep study and made sure the doctor's assistant read it prior to him seeing me. I think this lead to them realizing the extent of my problems better, the suffering I was undergoing and also caused them to address problems they had either never mentioned or neglected and this lead, I hope, to more attention to my case and more willingness to help me.

Your suggestion really helped and I am hopeful due to the answers I got on this forum to get better equipment and help for unaddressed problems I have just found out I have. Plus it will now be in my file to remind them on my next visit.

This has all encouraged me to go more frequently to doctor as I am realizing lately how many of my emotionally, mental, and physical problems are related to sleep apnea and the fact that the pressure was too low, I had unaddressed PLMD, mouth breathing and wrong mask and too long tube that will now, hopefully, be addressed. I feel hope for the first time in a long time. Just raising my pressure has helped me be more calm and cheerier and less emotional, although the problems are still far from solved.

I had developed a phobia of doing sleep studies due to constant need to get up and use the bathroom and with all those wires, it's hard and fear they would lower my pressure drastically like they did that one time; consequently, I avoided going to doctor and for sleep studies due to fear. Had my machine not broken and I was forced to go in, I would still be where I was just getting worse. Had my regular doctor signed my prescription and had she not felt me not going in for so long (5 months--wow), I would not have done this sleep study and learned I had periodic limb movement disorder and my pressure was too low. This has been such a blessing in disguise and the sleep study was not bad at all, so my phobia is gone and I plan on doing them every opportunity that the insurance gives me since I now realize how doing this is important to helping resolve my exhaustion, depression, etc d maybe preventing the high cholesterol and blood sugar problems I have recently been getting. With a neighbor recently losing a leg to diabetes, two relatives going blind, and seeing the problems dialysis causes and learning that most of the people are there for diabetes, I don't want to be in their [places and I see that resolving this issue will go a long way to resolving that one too, hopefully. they is a link I am reading and learning between sleep apnea, sleep deprivation, and diabetes and high chlosterol and high blood pressure.

Anyway your suggestion to print this and take to the doctor was perfect and I thank you.

[sleepyjane]

tomjax,

I hesitate to answer you for fear you will come here to attack me now, but I wanted to say thank you and I hope you are having continued success with quitting smoking,.

I quit a three pack a day habit thirty years ago this June. I used the cold turkey method and by right should be loaded with money at today's cigarette prices. unfortunately, I am not but oh well.

Although I know you do not believe in alternative health, I thought I would pass this along.

A man I was dating who smoked over thirty years decided to quit when I had to go to the emergency room after sitting in the car with him chain smoking on a weekend trip. I gave him herbpharm avena licorice tincture and he successfully quit saying that he had no cravings at all for 5 days which I found amazing as I had continual cravings when quitting smoking (without the tincture)..

Sadly, after surviving a major accident on the freeway and having his life saved by truck driver when he ran over after calling 9-11 and saw blood spurting out of an artery in Dave's neck just three months before and telling me how grateful to God he was for a 2nd chance at life, and shortly after quitting smoking, he suddenly died of recently diagnosed diabetes at the young age of 43...one of the nicest men I ever met.

Anyway, good luck with quitting smoking and if you did not succeed keep trying. My dad died of lung cancer and it is not a good way to go. My brother quit after several unsuccessful attempt with hypnosis and has not smoked in about 15 or more years. You will never regret not smoking once you succeed.

[sleepyjane]

[quote="linda b"]Jane, The agony you are suffering, both mental and physical, comes through loud and clear in the post and my heart aches at the thought of all you have gone through. It truly makes my 'sufferings' seem somewhat trivial!!.

I agree with all the advice that has been given here, but would like to add a couple of things. First of all, you need to know that getting better with sleep apnea therapy can take some time. As many have said on this forum, you have years of sleep deprivations to 'make up' and that does not happen overnight. It doesn't take forever, but it may be weeks, even a few months before you will notice a difference. For some few it is more instantaneous, but for most it is a gradual improvement until one day we realize "Hey, I feel better!"

Another thing I want to mention has to do with oxygen. If you are considerably overweight, and in view of the other health problems you mentioned, it may be that your blood oxygen saturation is too low. I was diagnosed with COPD (chronic obstructive pulmonary disease) several months before my sleep apnea diagnosis. My pulmonologist put me on oxygen when sleeping. We naturally breathe much more shallowly when sleeping and if the lungs are damaged for any reason, they may not be able to provide enough oxygen to the body. Any saturation level below 89% is considered too low and, untreated, can cause many of the same symptoms as sleep apnea. What I'm trying to say is that you may need supplemental oxygen along with xPAP therapy. I had several of your symptoms before going on oxygen and I felt considerably better with just the oxygen even before starting the XPAP therapy several months later.

I've never used a full face mask, but it sure sounds to me like that is what you need. A lot of people on this forum seem to like the Fisher Paykel 431 and the newer 432.

Oh, and one other thing -- some weight gain can be attributed to sleep apnea and the brain not getting enough oxygen -- there's some kind of chemical change that affects the 'need' to eat all the time. I've lost 40 lbs and the only changes I've made are the APAP therapy with supplemental oxygen and changing from regular Coke to Zero Coke. I've been unable to do much exercise due to bone spurs in my feet and a back problem. I've had surgery for the bone spurs and am trying to get the back problems identified so, if possible, it can be corrected. Then I plan to aggressively hit the treadmill.

With all sincerity, I wish you some good luck. You certainly need some. Keep looking until you get a really good doctor who can help you with all this. You may be poor, but this country should be able to provide proper medical care for you. Please do not hesitate to post again to let us know how you are doing or if there are specific things we can help you with.

[sleepyjane]

I am starting to feel like killing myself again if I can't solve this and wishing maybe I'd die but knowing me I won't act on it but all the misery is not something I want to go through again.

Jane

All of this suicidal talk is very alarming, have you sought out professional help? The C-Pap troubles mask problems etc. can be fixed and are some of the issues most of us here on this forum struggle with each day, but thinking about killing oneself is quite serious.

Hope you can get help before its too late!!!!

Dale

Hi shipping I am feeling much better. I am in counseling and do seek help from suicide prevention and did when I posted that. Because the antidepressants made me suicidal the whole time I was on 14 of them (15 years--mostly SSRI drugs) and because one, a very dangerous MOA inhibitor threw me in the hospital, I refuse to take antidepressants drugs. The FDA now puts a black box warning label on SSRI drugs like prozac, zoloft, and so forth due to its great correlation to increase depression, finding false and minimized tests done by the drug makers, increased suicides and suicidal ideation and violence including more violent and gory forms of suicides in people negatively affected by the drugs, I no longer take them.

Because the mental health clinic I go to and other clinic and the psychiatrist are geared around figure out which drug to give and get them out of there within 15 minutes, the doctors don't know what to do to help.

Even the doctor admitted although they are trained in talking therapies somewhat, the system does not allow for this but only treatment with a drug (or now the increased use of the quite dangerous electroconvulsive therapy).

I go to the counselor but feel I receive no more help than with talking to anyone,...talking always helps but I go just as a habit feeling I get essentially no help from it. But don't worry..if I am strong enough to live through 15 years where I did not have one day without a problems, many with several problems, and often serious problems while having continual suicidal ideation and didn't kill myself (by the grace of God), I am hopeful now that I am off the antidepressants that made me worse, I can handle this. Going through all that has made me stronger. I had no sleep for at least two days when I said that---was dealing several problems that all came up within 2 days and triggered past sadnesses.

I felt bettter after I got some sleep. Please don't worry. I'm better (though certainly far from where I want to be).

[sleepyjane]

hi Kathleen since you mentioned people pm me to help, I would certainly welcome ones that are helpful and supportive as I have been made to feel very unwelcome and roundly attacked and re-attacked on the thread I mentioned above (natural and alternatives aids for sleep disorders or something like that..the link is in a message above)

I would greatly appreciate pm to advise me. I have been bashed and insulted ad nauseum on here on the thread about alternative therapies. I even resorting to begging people to stop harassing me as it was causing me to be so upset and to cry and that seems to spur them on even more. I could use someone nice to be supportive as I am tempted to leave and since I find this the only place I have found hope, I hate to do that. There are about 4 people who continue to try to upset me and name call.

They always excuse their unkindness and throw it back on me. I haven't been on that many forums and want to know is this kind of personal bashing and insulting is common, how prevalent is it on here, and how does one not let it get to them.

Thanks for anyone willing to help and let me add if I get a message from the several people bashing me (and then calling it nonbashing) I will not read it as obviously when I essential beg you to stop and ask you and tell you it is making me cry, you just continue anyway, I am sure anything further you say to me just has that intent and will not be of use, so it is better gone unread and unresponded to. But I would really appreciate hearing in a personal message from some of the nice people who initially were so helpful and sharing and not begrudging of sharing the forum if it did not meet their (the bashers and insulters and attackers) standards.

[sleepyjane]

offerocker (cute membername)

Do you have RLS too or only PLMD.

I have never been aware of having jerks in my sleep. I am uncertain if they are waking me up but not to my knowledge, but maybe enough to disrupt my sleep they gave me virtually no info on it.

I did request records but not here yet and just mailed a letter to the doctor's assistant asking her to clarify if the jerks were disrupting my sleep or arousing me any (that is are they waking me p enough to totally fragment my sleep even if I am not consciously aware of it. So hopefully, I will know more. I also mentioned in the letter that the package sample of requip said it was for restless leg syndrome which is a different disorder. I also asked about if he will prescribe a tens unit. I read they help with the jerks. My sister owns a medical supply company and can get me one if he will prescribe it.

Interestingly, both these drugs (I think on miramix and am certain on requip) are also used to treat Parkinson's which is related to involuntary movements and the dopamine level in the brain. The only antidepressant that ever gave me some improvement was a mao inhibitor that affected dopamine, so I am thinking I am low in dopamine. Requip and miramix raise the dopamine since I am very reluctant to take these drugs, I was thinking I might research and take a dopaminergic herb to help. I am currently researching.

I am thinking of getting the advise of my general practitioner, an allopathetic trained MD who is very smart and very into alternative treatment and also maybe my psychiatrist who is drug oriented, but also pretty knowledgeable of things alternative and somewhat open to it as she knows I will rarely take drugs.

Interestingly, she finally talked me into taking neurontin but after years on it, I decided to stop taking it, and stopped about 3 or 4 months ago, but I just read it is sometimes used for PLMD. I wonder if it was helping me.

I didn't know I had PLMD, but everyday, I woke up the backs of my calves felt like I exercised all day (apparently, I was exercising all night with the constant jerk/flex of knee, ankle, and big toe.).. My knees hurt so bad when I woke up but I attributed it to arthritis and my big toes ached on occasion so badly they thought I had gout but no problems with that last 6 months. Now that I found out the big toe is the one you jerk/flex, I am wondering it all these leg and foot and knees pains were not due to all this nocturnal movement.

It is amazing. I have tried several alternative treatments for the last 4 nights and although I do not know if I am still jerking as I never was aware of it and live alone, the leg pains have greatly diminished making me think maybe these alternative treatments are helping.

[hades161]

*Sleepyjane*

*I learned that the antidepressant drugs meant to help me were actually exacerbating my depression and causing heightened suicidal ideation. when I think about how many families have suffered and how many victims killed themselves or suffered a pain beyond believe that clinical depression is (especially when heightened due to the SSRI) drugs, it makes me so sad. Thank goodness the FDA now puts a black box label on these drugs warning people of this effect. It is especially sad that teenagers, with their whole life's ahead of them,. were often the victims of the drugs meant to help them. Were you taking antidepressants when you felt like that?? *

Yes, I did feel that the anti-depressants added to my self-destructive thoughts and actions. Yes, I was taking them at that time. I feel you have to take a look at your whole health picture and relate that to your doctors and therapists in order for them to fully realize the effects of putting a person on meds like anti-depressants can have. For many people the meds are the right answer but like most everything I have found in life so far, it's different for everyone. I use to blame the doctors and therapists for many things but in the end I have to say I didn't tell them everything nor did I take a fully active role in my treatments. No one can solve such a complex problem without all of the variables being known. I feel you must find and treat all of the health related things in your life as being linked. Leave nothing out and actively try to find the right one or ones to pull on to loosen the knot that has become your life.

I am very glad you have taken the steps and are working on your OSA treatment and hope you continue to try to make your treatment work for you. My hopes are with you and like I said your not alone.

[sleepyjane]

Quote-I feel you must find and treat all of the health related things in your life as being linked. Leave nothing out and actively try to find the right one or ones to pull on to loosen the knot that has become your life.

This is an interesting way of putting it. I like that. And it is just so amazing. In the past few weeks alone, I have learned so many of my emotional, mental, and physical disorders/symptoms are all linked to sleep disorders which may also have a root cause I am not aware of. I am assuming it involves the brain, nervous system, and hormonal having something dysfunctioning. But I have just been amazed as I never realized these seemingly diverse things were linked with sleep deprivation. This give me hope if I can get this better, some of my other things might reverse.

Well, my doctors were aware of my sleep apnea, but we all that that cpap was treating it (didn't realize I was mouth breathing dimishing pressure, had hose too long, that I was still having apnea despite doctor ordered pressure..so I guess no one questioned it. Although the sleep doctors may have know I was depressed, I don't know that they realized I was suicidal all the time (I may have been afraid they would make me go to hospital if they knew how bad it was, but can't exactly remember. My memory was even worse then..ind of foggy.

One must concede though that in the VERY brief time one has with the doctor, it is hard to get them to fully hear and understand one's symptoms..plus they are usually so booked that they don't have much time to reflect on individuals patients. I am lucky as far as my family doctor (I had a different one then and she was pretty good giving you time as is my current one) but GP is very smart and rapidly connects things and has figured out a lot for me. My sleep doctor I didn't see him that often and my psychiatrist is smart and open some to natural treatments and although she is the best I have had, she sometimes is insulting and thus I don't like her and try to avoid her. Since I won't take medical drugs for depression, there isn't much she can do for me as they are so trained to think drugs. I try to figure things out myself but I can only go on the self taught knowledge so it's hard and plus my case seems (and I have been told this by Dr's too) complex.

I do think finding so many things are linked with sleep deprivation is really going to help if only I can solve what to do for periodic limb movement as I am hoping the sleep apnea ed will be better if I get right machine, mask, and pressure. I wonder why he never mentioned this before as the technicians told me I was jerking my leg in last 4 studies but first time he ever labeled it and offered me drugs. I think because I mentioned my 20 years of depression and suicidal feelings 15 years, he was trying harder to figure out my case.


Well, it is interesting that you think the antidepressants exacerbated your feelings. I don't know..I really did not connect it to the drugs as we are told they will either help or not, but not told they can make it worse so it was the last thing on my mind. I just figured it was all the problems. Now I am wondering if I would not have been able to handle problems even though they were serious and constant if I had been getting enough sleep.

I once was offered a surgery to help with bladder problems but doctor left city before I found out if it was covered by insurance. It was a new surgery and only a few doctors did it so I just gave it up. but since the primary reason I am aware that I wake up is to use bathroom, I was thinking maybe that surgery might reduce bathroom wake-ups and enhance sleep, ?But sometimes I feel I have to go even if it is just a minimal; amount so not sure if that surgery might help my sleep. I may see if I can find a doctor or research the surgery more. I am just desperate to sleep well and see if my symptoms improve and reverse.

I did read antidepressants and other psychiatric drugs can make PLMD worse... (except probably the ones specifically used for the disorder), so maybe being on the drugs made my jerks more frequent and this lead to more sleep deprivation and that was helping to worsen my depression..you know the antidepressants maybe didn't directly cause exacerbation in depression but worsened sleep disorder and that made me more depressed/suicidal, but who would know that stuff but a pharmacist and you usually don't tell them you have PLMD (plus I didn't know I had it then).

Well, anyway, thanks for your good wishes. I am still waiting (one week) to hear back with answers to a letter I sent doctor's assistant in order to get my new machines and mask..I hope it works out.

Jane

[NightHawkeye]

. . . my psychiatrist is smart and open some to natural treatments and although she is the best I have had, she sometimes is insulting and thus I don't like her and try to avoid her. Since I won't take medical drugs for depression, there isn't much she can do for me as they are so trained to think drugs.

Sleepyjane, you may be interested to know that psychologists have far more extensive training in psychological matters and counseling than psychiatrists do. Psychiatrists, as you have indicated, are primarily trained as "medical" doctors, meaning that their first solution for most problems is to prescribe drugs. Since that is not what you want, a good psychologist would be far better suited to help you explore any underlying issues. Give it some thought.

. . . I am hoping the sleep apnea ed will be better if I get right machine, mask, and pressure.

The apnea should be fixable with a little perseverance on your part. Take one thing at a time. First try to get the apnea under control, because so many other effects stem from the apnea.

I once was offered a surgery to help with bladder problems but doctor left city before I found out if it was covered by insurance. It was a new surgery and only a few doctors did it so I just gave it up. but since the primary reason I am aware that I wake up is to use bathroom, I was thinking maybe that surgery might reduce bathroom wake-ups and enhance sleep, ?But sometimes I feel I have to go even if it is just a minimal; amount so not sure if that surgery might help my sleep. I may see if I can find a doctor or research the surgery more. I am just desperate to sleep well and see if my symptoms improve and reverse.

Yep, most folks who check in with cpaptalk report surprise on starting effective CPAP therapy that their bathroom frequency drops from multiple times during the night to never. That was certainly true in my case. Again, get the apnea controlled, and then see where this and other matters are.

Well, anyway, thanks for your good wishes. I am still waiting (one week) to hear back with answers to a letter I sent doctor's assistant in order to get my new machines and mask..I hope it works out.

Don't hope! Make it happen, Sleepyjane. Waiting for physicians to solve your problems is NOT an effective strategy. Take charge. A week is long enough to have waited. Call the office. Tell them you will come by to pick up the machine and mask prescription, and then go get your new machine and mask. This is not rocket science. Just, do it.

Oh, and one other thing . . ., keep us informed of progress.

Regards,
Bill

[Auricula]

I hope that more successful CPAP use will eliminate your need for surgery.
http://www.sleepapnea.org/resources/pubs/noct.html
Click on this link for this article:
Why does sleep apnea sometimes lead to frequent urination at night?
by Dr. Patrick J. Strollo, Jr., of the Pulmonary Sleep Evaluation Lab at UPitt Med School

http://www.talkaboutsleep.com/message%2 ... hp?t=18602
"During an apnea event, when the blood oxygen level drops, the heart beats harder, trying to deliver O2 to vital organs. this increases blood pressure, and the body releases diuretic hormones in an attempt to reduce blood volume and pressure...so all those potty trips alert you that your heart has been under stress trying to maintain O2 and deal with blood pressure spikes.
Lack of nocturia is proof you are benefitting from cpap." by okie-girl

http://www.apneasupport.org/about8873.html
The following is a partial quote from the book Sleep Apnea – The Phantom of the Night.
pg. 31 "Normally there is a marked decrease in urine production /output during sleep, but people who suffer from sleep apnea syndrome have high urine production during the night. Repetitive episodes of OSA cause a secretion of a hormone (atrial natriuretic factor) that increases your urine output during sleep."

[kteague]

SleepyJane,

Wow, what a difference hope makes! I agree with you and others that mastering the OSA treatment is the best way to see how many of your symptoms improve or resolve. When one has been miserable for so long, every degree of improvement feels like hitting the lottery. That major piece of the puzzle should clear the picture (and your head) enough to go forward with the remaining issues.

As far as some medications causing suicidal thoughts in a portion of the population, I can only say I have always been resilient and optimistic about the future's potential for being good, and only for a brief period in my early 20's was I different. The docs had me on 4 different pills to help me cope with my husband's murder. Post partum blues may have played a part, but I nearly did some horrible things. In my moment of crisis I somehow came to the presence of mind to know this was not me, threw the ammo in a place not easily accessible, and flushed the pills. Life can be hard, and the lure to self destruct did not fully disappear for a little while, but never again did I consider following it. In my clear mind I could recognize it as an influence not of my choosing, and my faith helped me believe I was not doomed to sucuumb. When medicated, I was scarily out of balance. Also, a friend (old roommate) was heavily medicated for depression, and I can't count the times we ended up hauling her to the ER after overdoses or wrist cutting. I should have known pills weren't the answer!

A lot has been learned about use of drugs to treat depression. Back then there were no warnings like we see now, and the meds were bundled with so little understanding of their interactions. A typical depressed psych patient could be on 4-6 regular meds. I'm not against all meds as at times they really are necessary. Just very much more discerning.

Kathy

[DavidCarolina]

I love this story. It shows many of us can become free of the system, and also that simplicity is usually the best answer to any question.

Unfortunately, a lot of us on here used to be very athletic but breathing problems has affected our CNS and we're limited now. I used to walk
up to 90 minutes per day but i cant do that now. When I have the occasional apnea event Im pretty much toast for 2 or 3 days.

But we do walk as much as we can at whatever pace is possible. I think weight loss comes primarily through diet--getting your body to start burning
calories instead of storing them.

My sister weighted 340 pounds. She had many of the same problems
which you describe. The Doctor put her on Synthroid. She made up
her mind she couldn't tolerate her life anymore so she started walking.
Every morning, she walked 5 steps farther than the morning before.
Every night, she walked 10 steps farther than the evening before.
Now, it is 2 years later. She has done nothing but walk, walk, and walk.
Farther and farther and farther. I don't even recognize her as my
sister. She now weighs 135 pounds and she doesn't take her diabetes,
high blood pressure, depression, or cholesterol medicine anymore.
No one believes her. They think she had some major surgery, but
she is so poor, all she could afford was walking. Each time, a little
farther. No more CPAP for her. Somehow she just made up her
mind to change her life. A couple of steps at a time.