"please keep me updated about oximeters "
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How and why did you find this forum and how has it helped you?
I came across SleepGuide while googling sleep apnea. I think I was on CPAP successfully (I was using it 100%, but did not know how to check efficacy) for a little while, but was trying to learn more about the disease and treatment. I wasn't looking for any specific information. The first thing I learned was how to check my daily AHI, AI, and leaks.
Then I learned where to get a clinical manual so I could enter the clinical menu and actually view, without changing (still too scared and unknowledgeable to do that) anything.
I saw a doctor who could not get me titrated and learned what he did- he just looked at AHI and raised the pressure if it was too high. I then changed docs, had another sleep test and thought I was finally titrated and then my at home numbers--AHI- remained on average 18 I started self titrating. I haven't been very successful. I've tried CPAP, Bilevel and AUTO without different results. I've been up and down through all the pressures from 4/8 to 27/30 and everything in between.
From the forums and from my doc I learned about ASV machines and am exploring the possibility of a sleep test to see if ASV would work for me. I have gotten a lot of information about ASV and the difficulties involved in getting used to the changing pressures.
My trial of ASV is in limbo right now while the DME explores the cost to me for the machine to see if I can even afford one, before I find out if it works for me (chicken or the egg).
What I am hoping for with the ASV is that it will bring my AHI down, I'll stop sleeping 12+ hours every night, I can stop my Provigil, and get some relief from drug resistant depression.
Without this forum I wouldn't even know that I wasn't doing well, much less what to do about the problem.
Views: 88
Replies to This Discussion
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Permalink Reply by RockRpsgt on
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I sought this forum out for a different opinion on sleep. At first I thought I was the teacher. Little did I know that I was the one being taught. I have learned more from listening, debating, and researching the many subjects brought up than in any text I could have read. Sleepguide has made me a better technologist.
Mary, What are your grounds for going ASV. I thought that your events were not central and had almost no desats.
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Permalink Reply by ZolliStar on
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I'm a newbie -- formally diagnosed June, 2011 -- and followed what my doctor told me to do.
My sister told me that a neighbor's relative, a young woman, had just been diagnosed and was returning for an overnight to be titrated for a CPAP. Before she had a chance to return, her nine year old son found her dead in bed.
That sad and jarring news prompted me to google "sleep apnea" + "death rate". One thing led to another and -- happily -- I found several sleep forums, including this one.
I'm very grateful to Mike for launching this site and for people like Mary Z, RockRpsgt and others for their involvement here. We all owe them.
Let's make it a point to thank them.
Mike, Mary, Rock...THANK YOU!!!
~ZolliStar
PS: And BTW, yes, I was stunned to learn that there is an "any cause" death rate that is 5X greater for apneacs as compared to a normal population. I've since learned/heard of several friends' friends who have been found dead in bed. Only likely/possible cause (after autopsies) was SA. (I've made my condition well known to friends, obviously.)
Wow.
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Permalink Reply by Mary Z on
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Rock, I don't know if I am going with ASV. The doc feels a trial is certainly warranted.
I hope to get my AHI down- it has been average of 18 over the past 6 months, I am hoping it will help with the hypersomnia- 12+ HOURS OF SLEEP A NIGHT (HALF MY DAY), PROVIGIL TO STAY AWAKE DURING THE DAY, AND A LINGERING, DRUG RESISTENT DEPRESSION. i'LL DO A NIGHT IN THE LAB TO SEE IF IT WORKS. iF NOT WE STOP THERE. iF IT WORKS i PLAN ON GIVING IT A TRY- (sorry for the yelling, too lazy to rewrite). Last test I didn't have any centrals, but something is going on. If it's the meds, maybe this will compensate.
RockRpsgt said:Mary, What are your grounds for going ASV. I thought that your events were not central and had almost no desats.
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Permalink Reply by Terry Vella on
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Mary, I know you said you have drug resistant depression, but are you on any meds for it? if so, could they be a cause for your high numbers? I was on a large dosage of anti drepressants and once I started CPAP the symptoms started reducing and I am now slowly tapering off them. It sounds like the sleep study is what you need to at least try to get some sort of answer for the treatment.
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Terry, I have had life long depression. The period since 2005 has been particularly bad. I have a very good psychiatrist and have been on meds regularly since 2005 and just can't quite get over the depression. I'm bipolar and we have the mania under control. Tapering off meds has been, not to be dramatic, life threatening. No telling what they do to my sleep architecture, though. The doc does think they are the problem and I agree with him after trying self titration in every mode at every number and combination of number and a number of titrations in the lab. Sometimes I do have an AHI under 10 and a fairly low AHI under 4.
Thanks.
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Mary, a friend who has problems not unlike yours (although she doesn't have SA -- but her husband does!) tells me that in addition to her meds, something that makes a big, big difference for her is OmegaBrite. Here's info from the site that might be interesting to you: http://omegabrite.com/why/effects.html
My friend's brother is a psychiatrist. He's the one who introduced her to OmegaBrite and apparently has almost all his patients taking it. OmegaBrite is not a cure, but it is a help, according to my friend and -- especially -- her psychiatrist brother. Maybe it could help you.
I think my friend takes about six to ten a day. I take three a day, but not for depression-related matters. I've avoided taking statin drugs by diet and taking OmegaBrite and other heart-healthy nutrients. Last tested, my HDLs (the good cholesterol) was over 100, which is more than twice the ideal number. My internist marvels.
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Mary, Sorry to hear about the life long depression, it's great to see you have the mania under control, I have only had clinical depression for about 3 years but that is enough. I can't say I know how you feel because no one really knows what it' like similar to sleep apnea. I assume with the bipolar and mania you are going to have to stay on meds anyway even if it effects the sleep apnea. I know what you mean about the tapering off of meds, I was on twice the therapeutic dose of anti depressant that I am on and get all the side effects each time I go up or down, flu like symptoms, brain zips etc. I can understand that yours are worst and life threating. I still think the sleep study is probably the way to go. On the depession, you have probably tried it but I go to an outpatient course each week for mindfulness. It seems to help me a little being with other suffers that know what we go through and the exercises seem to help a little. I use it more as a supporter group and being able to talk to others. Keep us updated on how you go and remember your not alone.
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