please help I am so desperate

SleepyJane:
Please fill out your Profile, so that you can list the equipment that you have, and also, others can PM (Private Message) you.

There are others on this forum who have also contemplated suicide, and perhaps some private input and support would help you.

Please, please hang in there, take one day at a time, and know that you have this place and everyone here to come to at any time.

Kathleen

thank you all for your help. A bunch of stuff came up recently and I was not able to post, but I will update soon. Had my visit with sleep doctor today --will soon post but I have only averaged 3 or 4 hours sleep a night last few days so I need to go sleep.

I was also told I have periodic limb disorder today. I think they said I did it 175 times in the study. i have been told by the technicians doing the study in the past that my legs jerked but no doctor ever addressed it. This kind of makes me mad that it showed up in past studies and I was never before told I have it nor was it addressed despite being in treatment about 12-15 years or so. Today for the first time his assistant mentioned it and the doctor (in the course of his rapid visit) forgot to address it. I went back and they gave e a sample drug (requip) but I am very reluctant to take it as I do not generally take allopathic drugs. It is hard to explain how resistant I am to these drugs, especially since I feel the antidepressants that also altered brain was responsible for my 15 years of constant suicidal ideation which all stopped when the drugs were stopped.

These last 2 weeks I was declining but many problems and little sleep, but not to the point I was before. I have only taken a few aspirins in the last 25 years and never take cold meds etc. I use herbs and alternative but I doubt there is much to treat this disorder but I will search and see later.

One of the side effects of requip was hallucinations (I think it said 5% chance but I could be wrong) and since I have a brother with schizophrenia, I do not want hallucination although I realize I may not get the symptoms. Things like "increase in bizarre behaviors/compulsions like excess gambling and hyper sexuality may occur" It seems to alter the l dopa (is this similar to dopamine) in the brain and due to bad experiences with antidepressants in the past, I do not like the thought of altering my brain; however, he essentially said that even if I fix the sleep apnea, if the periodic limb disorder is not treated, I will retain my symptoms.

So I don't know what to do. does anyone have experience with the drug particularly if you rarely take drugs. Are their any herbal or alliterative health treatment. Also is periodic limb disorder the same as restless leg syndrome. On the drug sample pack it says it is for the treatment of moderate to severe primary restless leg syndrome. If the two disorders are different, how are they different. Again thank you for all your advice and support. I am grateful and will post again with updates, responses, and so on.

sleepyjane wrote:.... Also is periodic limb disorder the same as restless leg syndrome. On the drug sample pack it says it is for the treatment of moderate to severe primary restless leg syndrome. If the two disorders are different, how are they different. Again thank you for all your advice and support. I am grateful and will post again with updates, responses, and so on.

Hi, sleepyJane!

Oh, my, I hope you are feeling somewhat (at least!) better while I'm writing this.
I too have PLMD, which IS different than RLS; by definition, RLS is the 'urge' to move one's leg(s), and PLMD is involuntary movement of either/and legs and arms.
I take have been taking Mirapex for over 10 years for PLMD. It DOES help. If I forget to take it (and have no symptoms at the time), believe me, after being asleep for between 1-2 hours, the legs will start in, very subtly, w/muscle jerks, just enough to wake me (even w/cpap!). Sometimes, I try to 'wait it out', but after 10 minutes, I have learned to just get out of bed, take the pill i forgot to take, then stretch my legs if it's too bad. I usually need to wait an hour before it subsides. Sitting aggravates it, it seems. It may rear its head as early as 5 p.m., so I keep a .25 w/me if we're out to eat. I'm 'supposed' to take that dosage early, then .5 closer to bedtime. There were times that I was up ALL NIGHT, in tears, because there was nothing I could do to alleviate the discomfort of my legs jerking from under me, nor nothing I could do to comfortably make use of the time!. POSESSED! That level has subsided for quite some time now, and I take the meds regularly.

Requip is advertised for RLS, not PLMD. I do not know how that drug works.
I know that I tolerate Mirapex well, and it does help me.

I hope this helps you; many physicians do not explain this clearly, and use the terms interchangeably. I have explained the terms as I've come to understand them and their meanings, etc. These are MY personal experiences, with no medical experience. (disclaimer).

I wish that I were able to do without the many meds, as you have. This involves the nervous system, and my doc has suggested I take 1000mg B12 daily, which I've been doing. Blood test coming up in a few weeks; maybe it will show 'something'.

By the way, the PLMD canl certainly wear you out at night, even on cpap.
Some report a lessening of the disorder while on cpap, others an increase.
Crap shoot, eh?
I wish you good luck in this, and empathize with your trials. Determination, and being a communicative patient is the key - assuming your doc truly listens; but I give you credit to have found one that DOES.

Keep us posted please, sleepyjane. .

P.S. One thing that aggravates (agonist) my PLMD is, unfortunately, chocolate. I limit it to no later than 3 p.m.

I haven't forgotten. I will update soon and respond to individuals. In the meantime, does anyone know what retaining carbon dioxide in your lungs (and hence blood) does to a person healthwise.

Bless you all. I have learned more in 2 weeks on here than in the 15 years I have been in treatment from you smart and caring people. I am so grateful you don't know.

sleepyjane wrote: Bless you all. I have learned more in 2 weeks on here than in the 15 years I have been in treatment from you smart and caring people. I am so grateful you don't know.

Sleepjane: We DO know!
You don't know how many of us said the same thing at one time or another on this forum.
We are very happy for YOU that you also have found this place.

Re your question: I don't know, except that it's much better than carbon monoxyde.
(that was an honest response! )

lol..i I guess it is better than carbon monoxide and I should remember when down it can always be worse.

I guess you guys can identify. well, just ever so grateful..I may be getting much better treatment thanks to you all. better and more effective machine and mask..if only I was more knowledgeable and proactive years ago, I might have felt etter sooner. Thank goodness that old cpap broke or I might stuill be miserable and no hope.

I am still kind of miserable but now I have hope...I may feel better soon,

sleepyjane wrote:lol..i I guess it is better than carbon monoxide and I should remember when down it can always be worse.

..if only I was more knowledgeable and proactive years ago, I might have felt etter sooner.

Sleepyjane - I think that would be a perfect title for a book: "If Only", and many of us could write one - you're not alone in that, so throw away any guilt you might have; we need to be aware of something, then have researched it before we can even begin to be proactive.

dear sleepness and others on here who have sought to help me,,

I am catching up on this thread and want to thank you again for your advise. When I went in for results of sleep study, the doctor said they tried me to 21 and he was switching me from cpap 16 to bipap 14 and 18. when I asked why he said it was because I was retaining carbon dioxide in my lungs and the low pressures would help me breath it out better and that although I tolerated 21 fine that high pressures create a possibility of central sleep apneas. I was apparently having apneas (at 15 which was the highest me machine went), 16, (my previous recommended pressure) and 17 and I guess 18 was OK but I don't know why then she tried up to 21 as she said if everything was fine, she would not try higher so I assume everything was not fine at 18 for her to try higher as she was very emphatic in saying she would not try higher if it was fine, but for whatever reason, the doctor decided to use bipap of 14/18.

the also diagnosed me with periodic limb movement disorder and I guess if I don't fix that but fix the apnea, my symtoms will still remain and this is a problem as I am afraid to take the drugs due to its potential for serious side effects.

But I mentioned how some people on here highly recommended the remstar auto with c flex who had similar problems and he at first said "NO you don't want that --it will be changing pressure all night and giving you fragmented sleep" but then abruptly changed saying "maybe you are right" and said that the auto is what he will prescribed.

After leaving I began thinking maybe I should have stuck with bipap if I was retaining co2 in my lungs as if the pressure was high on auto on the exhale, I may continue to be retain it in my lungs which is not good. So much new info was thrown out and so little time was spent with doctor, I did not have much time to reflect on it.

I started wondering if auto was better for me than bipap. (I asked him to not just recommend auto if he really didn't feel it was best..he said try it three or four weeks (if provider lets you) and see if you feel better. but since I am not going to take the drugs for periodic limb movement disorder (PLMD)until I research and consider it further due to dangerous side effects, I may not feel better even if machine, pressure, and mask is good due to untreated PLMD.

Anyway, then someone told me about auto bipap and thought that would be ideal. I didn't know about this machine either and thought with it I would get the good effects of auto and also the positive benefits of bipap for co2 and such.

I did find out the insurance will cover it with a prescription (or so the provider rep said but he has been wrong on billing stuff before so hope he is right).

I just wrote a letter with several questions to the doctor's assistant that she may get in a few days asking if he will prescribe the auto bipap. I mention the respironics m with biflex as it was the only one I knew of and I hope he will be willing to change the auto to the auto bipap.

If he won't I am still wondering if auto or bipap (straight kind not auto) would be better. Since I can only get one every 7 years, I want to get the right one. I am so hopeful, he will order that one as when I found out about it, it seemed that would be perfect. Do you think it will give me the same benefits you are receiving on the auto if it is auto bipap?

dear Kathy,

I am addressing your first post to me on here. Sorry it has taken me so long.

Thank you for your kindness and compassion. As I mentioned elsewhere I saw a little of your history and you have indeed had a hard road with your sleep problems so I feel you can identify and you had some good comments. Yes it definitely affects cognitive ability and desperation can move one to do things they might not otherwise.

Yes, he set it to 4 and it would have took three years for them to realize their mistake is when I finally convinced him to recheck it as it wasn't right and that is when I found out I was getting no rem or stage 3 and 4 essentially, If the machine technicians would not have broken the rules and showed me how to set it higher, I might have gotten less sleep and killed myself as I was most vulnerable then. Due to this I was able to raise it myself to the previous level and not go three years at 4.

The recent study said I was having apnea at 16 and 17 and I was on 15 for years as this is as high as machine went. I apparently had no problem at 21 they said but he is keeping it at 18 (or was until he switched me to auto--see above post).

I am still interested to know if the hose length affects the pressure --maybe I will start a new topic and ask.

I am not sure if the results they shared with me at just at the best pressure (they only had me on bipap for 16 minutes) and ending study early when I woke up to use bathroom) or if it was throughout as they have not yet sent the records they said they would.

But I think it is good news. They said I slept 87% of the time but since they made me take ambian I probably slept more soundly than I usually do as normally I get up more frequently. I am also not sure how ambian might have influenced the depth of my sleep and since I normally don't take it am not sure if the results were as I normally get, but in the sleep study...if I remember correctly, I think they said I was getting about 5% stage three and four and this was good and some rem but not enough.

How does lack of REM sleep affect a person?

I am also going to try a full face mask I hope. He is bringing two kinds for me to try next week..hopefully, they won't leak and will stop the mouth breathing.

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CPAPopedia Keywords Contained In This Post (Click For Definition): bipap, hose, news, auto

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CPAPopedia Keywords Contained In This Post (Click For Definition): bipap, hose, news, auto

Offerocker wrote:Jane,
You've received excellent advice!
Although you are extremely tired and depressed, I hope you can work on losing weight; that will also help in your cpap therapy.
I strongly endorse an APAP with C-Flex!
Chin straps did not work for me either.
There are tapes on the market that are easy on the skin. Taping has made a difference for me, as I am a mouth-breather, and cannot wear a full-face mask. I find that, for me, they provide a larger surface for leaks.

Have you tried either the Comfort Lite 2 Simple Cushion (easy on the face, and comfortable for me, anyway), or the Activa, which rarely leaks on me. I am a side-sleeper.

Your sleep deprivation is most likely the agonist of your depression, not to diminish any other causes, but it "keeps it in the forefront".
Do you have PLMD (Periodic Limb Movement Disorder)? Legs &/or arms suddenly jerking and waking you? There are medications for that, Mirapex being one. Talk to your doctor about that issue; it certainly can interfere with my sleep if I don't take my meds within the proper time frame.

I'm not one to give this advice, but ANY kind of exercise is most beneficial to general well-being and sleep.

As suggested, be emphatic with your doctor(s) about your treatment, and let them know what's not working.

I know you don't really want to go through with the suicide, but can understand it fully. I think we would welcome going to a place where there is no longer pain - emotional or physical. The permanence of it stops us from fulfilling that urge, in addition to wanting to know what 'tomorrow brings'; that shows that we have some faith in our abilities that seem to be latent at the moment.
Know that there are others who DO care about you - whether or not you realize it or know them.

Although I couldn't add much to the previous posters' comments, I did want to let you know that you are not alone. Most of my support has come from the kindness of people on this forum, for some have had similar experiences, or the empathy to "understand", and care enough to provide an "open door" for support of any kind. I am happy for you that you have found this unique place!

Keep us posted on your progress. And remember it may not necessarily be a short road to success; few things are.

kteague wrote:I know it's hard to think of tackling all this when you are already exhausted. Keep your eyes on the prize.

That is advice that I will also keep in mind!

Kathleen

Jane,

Answers regarding hose length and pressure can be found by clicking on SEARCH at the top of the page. In the keyword box, just enter these words exactly like this " hose AND length AND pressure" You will see a ton of threads that discuss this. Just thought I'd save you the time of posting a new thread since I saw this topic come up before.

hades161 wrote:I can relate fully with you, my hopes are with you and NO you are not alone now. You have come to the right place for help and advice to treat your OSA. The people here are tops and have helped me and many others that have been where you are now. The more info you provide about the sleep study and your machine, the better and faster the forums here will be able to help you.

The right mask is key and your already working on that end so you doing good work there, stick with it and you will find something that works for you. I also got to the point of suicide, I have a nice big scar on my wrist to remind me daily of it. I too have done the anti-depressant run with the hospital stays and I can honestly say that for me, now that I have been helped by the people here to get it right, the Pap therapy has helped me feel better then all the years of the meds and Doctors I saw weekly ever did.

I am NOT BY ANYMEANS telling you to stop taking your meds or seeing your Doctors. I am saying though with getting this Pap therapy right you will get to a point where you WILL FEEL BETTER. Work with your doctors and this forum and you will see there is hope and a future you can look forward too.

Hades,

I am so happy that you have gotten help and relief and so sorry for the anguish of the thoughts that pushed you towards suicide etc and glad that you were not successful as I do believe we each touch so many lives in the course of a week or a month and if we were not here, we could not help them or find the beauty in life. Depression so clouds every thing. I recently was on a website where the question was asked did people know anyone that had committed suicide and how did that affect their families and the person answering the question. Reading the responses was so sad and made me really reflect on the effect this might have had on my children had I carried out my plans those three times I came so close and really feel grateful I had found the strength and the people on suicide prevention lines and God for showing me flowers that day when I called my mom to get me out of the house unknown to her what I was going to do and in seeing the flowers and nature which I had always loved so much and reflecting on the fact I would never see it again and in my mom forgetting something and me remaining to take a walk along a creek for the last time, I talked myself out of it so for the grace of God in events, my kids may have suffered life long pain that I had rationalized away in my cloudy state of depression.

Finding out from reflection and reading a book called "Toxic Psychiatry: Why Therapy, Empathy and Love Must Replace the Drugs, Electroshock, and Biochemical Theories of the "New Psychiatry"" by Breggins and some of his other books. http://www.amazon.com/Toxic-Psychiatry- ... 0312113668 (I hoghly recommend reading this book), I was further glad I didn't have recommended ect and that I sopped taking antidepressants.

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 from the pain beyond belief 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??

I find great hope in the fact that you found getting your sleep fixed better did more than all the doctors and drugs before..great hope and I am hopeful due to the advice I have gotten on machines (especially if he switches me to bipap auto), full face masks (Oh I hope it will work but if it doesn't I guess I could tape as that seems to fix the mouth breathing), and addressing co2 retention might help me. I feel hope for the first time in years and do feel some motivation just adjusting the pressure higher. I self adjusted it to 20 while I am waiting for the new machine (prior to that machine was not able to go high enough). I am thinking this is fixing the apnea and compensating for mouth breathing as it is 2 above what he ordered and he said I tolerated higher but I will go with what he says once I get new machine,..in fact, since it is self regulating I won't need to raise higher. (sorry Kathleen--I was desperate and luckily sleep study proved a few weeks of this won't hurt me),

Now need to also find nondrug help for PLMD. I have tried some natural things and I am waking up only every 2-3 hours instead of every hour so I think it is at least helping. Thanks for the hope and good wishes.

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CPAPopedia Keywords Contained In This Post (Click For Definition): bipap, auto

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CPAPopedia Keywords Contained In This Post (Click For Definition): bipap, auto

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CPAPopedia Keywords Contained In This Post (Click For Definition): bipap, auto

Hi Kimberly,

I am sorry it took me so long to resoonse a bunch of stuff came up.

I do feel upset that I was never told about full face mask in 15 years of treatment, mouth breathing, auto pap. auto bipap, nor told of having PLMD even though it was mentioned to me by the last four studies (the previous three doctor never mentioned it) especially since it can cause so many of the symptoms I am experiencing.

I find it pretty awful (but good certainly) that I learned more in two weeks on here than in the 15 years previous and with my doctor/s. I like Hades above feel that I wasted all that time on medical antidepressants and doctors for a problem that is apparently phsical in nature.

I am grateful though that now I know these things and that I am discovering how so many diverse disorders etc are, in fact, connected, to insufficient sleep and poor quality of sleep. Now I can work more toward resolving this problem and not the 20 caused by it. God willing anyhow.

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CPAPopedia Keywords Contained In This Post (Click For Definition): bipap, auto

meister,

This is a very inspiring story. The fact that all her disorders went away is really miraculous.

I have thought about this comment after I logged off. I am starting to want to put more energy into eating better, enjoying life more, doing good things for myself.

Exercise is harder to do as it seems the last thing I enjoy doing but I am going to maybe try it at least some..but so far I haven't but I am not going to forget this advice.

Even if I wind up not doing it, I appreciate you sharing it and know it will motivate others. I am so happy for your sister. Her story will help others as well as herself.

And also gives another options should I never be able to resolve this medically. I know a man who I admire (Dr Richard Schulze and his incurable program advocates exercising an hour everyday along with his 19 other ruins for improved health.

I'll go get that and post it.

DR. RICHARD SCHULZE'S 20 STEPS TO A HEALTHIER LIFE...

1. PURE WATER (1 QT. OF PURE WATER EVERY DAY)
2. PURE FRESH JUICE 1 QT. EVERYDAY (BUY A JUICER)
3. STOP EATING ALL ANIMALS AND ANIMAL BY-PRODUCTS
4. EAT MORE LIVE, RAW FOODS
5. ELIMINATION (INTESTINAL DETOXIFICATION PROGRAM)see herbdoc.com
6. 5 DAY CLEANSING AND DETOXIFICATION PROGRAM see herbdoc.com
7. START WALKING, AND BREATHE MORE
8. MOVE MORE, SWEAT (EVERY DAY FOR 1 HOUR)
9. HOT AND COLD HYDROTHERAPY
10. WEAR COTTON AND OTHER NATURAL FIBERS
11. USE ALL NATURAL SOAP, SHAMPOO, DETERGENT, TOOTHPASTE
12. STOP WATCHING TELEVISION, ESPECIALLY THE NEWS
13. THROW AWAY, GIVE AWAY 1/3 OF WHAT YOU OWN
14. START LOVING YOURSELF AND YOUR LIFE (POSITIVE AFFIRMATIONS)
15. EXPRESS YOURSELF
16. HELP SOMEONE EVERYDAY
17. LEARN 1,000 JOKES AND LAUGH
18. HAVE MORE SEX
19. MEDITATE, FOLLOW YOUR SPIRIT, PRAY
20. LOVE, LOVE, AND LOVE MORE!!