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in need of a good sleep specialist
#1
so, ive been struggling with sleep apnea on some level for upwards of 15 years now. ive been through 3 sleep specialists and am now searching for #4. but before i waste any of their time or mine and based on my history with sleep apnea and the various attempts to increase my quality of sleep. as both a cpap and bipap solve my apnea but decrease my quality of sleep. i find myself in need of a physician that has some level of experience with this type of scenario. which, based on what i can gather, is rather unusual. im willing to travel anywhere in the continental US if the physician is worth the effort and expense (<-- 100% not joking here). i would add hawaii and alaska into that mix as well. its just that neither strike me as being hot beds for sleep apnea expertise. though that assumption could be wildly faulty on my part.

i apologize for posting here in such a manner, im just somewhere slightly beyond desperation at this point. ive read over enough of this forum to know your likely to have a ton of questions. im more than happy to answer all of them. but any information on any physician who has had any level of success treating patients with sleep issues who do not respond well to cpap or bipap would be extremely welcome.
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#2
Hi dolt,
Welcome to Apnea Board!

I'm unable to recommend a sleep specialist, especially since you've already been through 3, but a google search on cpap/sleep quality may help.

15 years is a long time to struggle with poor sleep. You stated that cpap/bipap helped your Apnea, but not your sleep quality. Could you elaborate on what specific issues you are having?

You've given us very little to go on. It may have been you were put on the wrong type machine, or that your pressure was not set correctly. There could be any number of reasons that affect sleep.

Do you have any other health concerns that could affect your sleep quality?

There are many folk here on this forum that can help, but you would do well to fill out your profile.


OpalRose
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




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#3
Hi dolt - Welcome to the forum!
After reading your post along with your problems, my questions are:
  1. Why aren't you using any type of analytical software to better define your problems?
  2. When was your last sleep study?
  3. What are your complaint(s) with your previous providers?
Based off the limited information you have provided at this time, I'm unaware of any sleep specialist that is clairvoyant.

If you will please provide more detailed information, we will be better equipped to offer guidance with your problem.
______________________
Useful Links -or- When All Else Fails:
Posting SleepyHead Charts in 5 Easy Steps
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Apnea Helpful Tips
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#4
hi there dolt...

I am like yourself unable to get restorative sleep no matter what type of machine I use: CPAP, BiPAP or ASV. My current sleep doc, my third, who is a gem and actually listens to me, said on our initial meeting that CPAP therapy should improve ones sleep quality, not make it worse.

There are many reasons that air being blown into one's nose/mouth can affect sleep quality, finding anyone in the sleep physician community that will even acknowledge that the machines can mess with sleep quality will be a challenge.

You could try a doctor by the name of Barry Krakow, he has a book called Sound Sleep, Sound Mind. He mentions the issues that you wrote in your post.

Also, one of our members here, robysue, has a blog on CPAP induced insomnia which is an interesting read.... it is here
https://adventures-in-hosehead-land.blog...er_19.html

I hope you can find some answers..
all the best,
Storywizard
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#5
storywizard, thank you very much for the info. i will absolutely look into that!

(11-17-2016, 01:52 PM)OpalRose Wrote: Hi dolt,
Welcome to Apnea Board!

I'm unable to recommend a sleep specialist, especially since you've already been through 3, but a google search on cpap/sleep quality may help.

15 years is a long time to struggle with poor sleep. You stated that cpap/bipap helped your Apnea, but not your sleep quality. Could you elaborate on what specific issues you are having?

for the apnea part, that is correct yes. i can't give you exact information at the moment but i am going to try to get my chart from my "current" sleep specialist tomorrow. once i have that i will give you the exact numbers. i know i have copies of all the sleep studies somewhere that shows this information. sadly relying on my memory on any level at this point is foolhardy at best Sad.

specific issue is extreme fatigue. diagnosis is severe sleep apnea. now, i wouldn't so much say that diagnosis is inaccurate in anyway (i clearly have severe sleep apnea). though im not entirely convinced it is a complete diagnosis. when i have used a cpap (have used two different units and many many different masks of different types) or bipap. my apnea issues are addressed and reduced to the point that my breathing is considered "normal". however, i wake up more tired after using a cpap/bipap than if i did not. ive had something in the neighborhood of 15 sleep studies performed and they all tend to show the same results. my current specialist's results haven't had notes from the technician by previous specialists results have. their notes were always the same. without cpap/bipap severe apnea issues sleep quality poor. with cpap/bipap apnea addressed sleep quality poor. additionally im reacting in some way physically to the cpap/bipap. i don't have a ready example as i had to have my ex gf explain it directly to my current specialist because i didn't fully understand what she was saying. but, on a consistent basis (5 to 15 minutes apart) i physically move my arms and body in some fashion that i apparently do not do when i am not wearing a cpap/bipap. i don't know if this type of activity was ever recorded in a sleep study. all i know is i have never been made aware of it by anyone but my ex and i did have her explain what i was doing directly to my specialist.

Quote:You've given us very little to go on. It may have been you were put on the wrong type machine, or that your pressure was not set correctly. There could be any number of reasons that affect sleep.

Do you have any other health concerns that could affect your sleep quality?

and i do apologize for that. i just didn't want to dump 10 tonnes of data on you with 1% being relevant or useful. i doubt i fully know what conditions i have that could be affecting my sleep. but i do know i have been diagnosed as having adhd, bipolar and ptsd. all of which i am being treated for. let me know if you want meds and dosages.

(11-17-2016, 02:54 PM)Crimson Nape Wrote: Hi dolt - Welcome to the forum!
After reading your post along with your problems, my questions are:
  1. Why aren't you using any type of analytical software to better define your problems?

sadly my only defense here is a lack of knowledge Sad

Quote:
  • When was your last sleep study?

  • roughly three months ago

    Quote:
  • What are your complaint(s) with your previous providers?

  • there has been an overall belief that a cpap cures literally all ailments. which admittedly i was very happy to hear in the beginning. but when that does not immediately solve the problem i see a lot of deer looking into headlights...

    provider 1 - roughly two years into treatment , imo, gave up as after multiple sleep studies and settings failed to improve my quality of sleep and started giving me medication simply to keep me awake.

    provider 2 - literally gave up and told me my only viable option was surgery. i was told later on that he retired shortly after the time frame i was seeing him. something about him taking on as many patients as possible and simply stringing them along until he retired. that is 100% rumor and i have literally no evidence to support this. but based on my singular experience, i have nothing to use to argue against that rumor either.

    current provider - oh where to begin. i knew things were doing downhill immediately from the first visit. but my now ex gf made me promise i would do this because i snore so loudly so i did. he didn't seem overly interested in any of my symptoms or any impressions i had on anything really. he actually went so far as to all but call me a liar when i told him i didn't have weight issues until after i had been diagnosed with sleep apnea. im confident of this being true because it was actually one of the few appointments i strongly remember with my first provider because kind of a lot of semi memorable things happened in those 45 minutes-ish.

    it was after my first sleep study. he was absolutely shocked by my results indicating severe sleep apnea as he stated very loudly that and i quote, "jesus christ, you didn't sleep for sh*t!". i had never actually heard a physician speak like that in the presence of a patient before so that was pretty memorable. he then went on about me being in amazing physical shape and that he didn't have a single patient that wouldn't give anything to be in the shape i was in. i worked out 4 days a week at the time though i wasn't in near as good a condition as i had been in the past. so when i informed him that i had gained ~10lbs since the sleep study (something like a month prior). he was so shocked he walked me down the hall and weighed me to compare to my previous visit. also memorable because one of the most beautiful women i have ever seen cut me off she rounded a corner heading toward the scale.

    but back on topic. the current dr seems pretty stumped at present. in my last visit i wrote on the back of the questionnaire you are asked to fill out about your fatigue/concentration level prior to each visit, "i am a danger to myself and others behind the wheel of a car. it is not just possible, but very likely that i will cause an accident that will harm or kill myself and or others". i also made this direct statement to the nurse and then to the dr. in person. in response to this he brought in my most recent sleep study results from using their cpap which showed that my apnea was being addressed effectively by the machine. our argument ended when i asked if my apnea being "cured" was considered a complete success if im still too tired to physically function as a human being. while my point was begrudgingly accepted, it did irk me somewhat that i had to make it to begin with. especially after making the direct quote to him noted above.

    at the end of my visit he requested i, "be very careful driving home".

    Quote:Based off the limited information you have provided at this time, I'm unaware of any sleep specialist that is clairvoyant.

    If you will please provide more detailed information, we will be better equipped to offer guidance with your problem.

    once again, i do apologize for the lack of information. i did expect push back based on that. the first post i wrote but did not submit was well beyond absurdly long. my only reason for not providing more detailed information up front was that i didn't want to overwhelm you with a bunch of information you didn't want. any questions you have i will answer to the best of my ability. thank you all for your replies.
    Post Reply Post Reply
    #6
    Well, I did ask for information. Smile

    If you are unable to get info from your last sleep study, are you able to give us some statistics from the last time you used a cpap/bipap? What was your AHi, and the breakdown of AHI....obstructives, or hypopneas, clear airways? How long did your use your machine before you gave up?

    It sounds by what you have said that cpap therapy treated your Apnea, but you were told that cpap cures all ailments? That just is not true.

    You may want to consider getting a complete physical with a new doctor to rule out any serious illness that can affect your sleep. Also, you are taking medications which can affect your sleep.


    OpalRose
    Apnea Board Moderator
    www.ApneaBoard.com

    How to Organize and Post ScreenShots

    http://sleep.tnet.com/resources/sleepyhead/shorganize
    https://sleep.tnet.com/reference/tips/imgur

    INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




    Post Reply Post Reply


    #7
    dolt,

    I am sorry that you are 15 years into your journey without any good results.

    This caught my eye:
    (11-17-2016, 05:31 PM)dolt Wrote: i don't have a ready example as i had to have my ex gf explain it directly to my current specialist because i didn't fully understand what she was saying. but, on a consistent basis (5 to 15 minutes apart) i physically move my arms and body in some fashion that i apparently do not do when i am not wearing a cpap/bipap. i don't know if this type of activity was ever recorded in a sleep study.
    It sounds like you might have PLMD or RLS in addition to severe sleep apnea, but that the untreated sleep apnea masks the PLMD.

    PLMD is "Periodic Limb Movement Disorder". PLMD is a very specific kind of limb and body movement and it can trigger a lot of arousals and destroy sleep quality. PLMD is not the same as restless legs syndrome (RLS). Contrary to its name, RLS can affect other areas of the body. Usually RLS will manifest itself in the evening before bed as well as right at bedtime.

    Here's the thing you need to be aware of when it comes to having both PLMD and untreated severe sleep apnea: If the untreated apnea is severe enough, then the apnea itself is disturbing the sleep so frequently that the PLMD doesn't have a chance to manifest itself---you are arousing so often to fix the respiratory problems, that the periodic limb movements don't happen because you're not in the correct stage of sleep long enough for the PLMs to occur. Once you start PAPing, however, the body is no longer constantly arousing itself to restart the breathing. So now you are in sleep long enough for the PLMs to start, and once they start, the PLMD arousals then start ruining your sleep.

    Quote: ive had something in the neighborhood of 15 sleep studies performed and they all tend to show the same results.
    How many studies were done WITH the CPAP/BiPAP? Do you have the summary data and summary graphs from any of the titration studies? A titration study is one where you are wearing the mask while in the lab.

    If you have the statistical data from any of your titration studies, you need to look for data on PLM arousals as well as the overall number of PLMs. It's also useful to look at the number of spontaneous arousals on both the titration sleep studies and the diagnostic ones.


    Quote:
    Quote:Do you have any other health concerns that could affect your sleep quality?

    and i do apologize for that. i just didn't want to dump 10 tonnes of data on you with 1% being relevant or useful. i doubt i fully know what conditions i have that could be affecting my sleep. but i do know i have been diagnosed as having adhd, bipolar and ptsd. all of which i am being treated for. let me know if you want meds and dosages.
    The medication for ADHD, bipolar, and PTSD can adversely affect your sleep cycles. Again, it is possible that when you are sleeping without the PAP, the severity of your OSA masks the sleep disruption caused by any one of these conditions OR the medication you are taking for them.

    Does the doctor or doctors who are treating you for the ADHD, bipolar, and PTSD problems know you have severe sleep apnea? Do they know that you have disruptions to your sleep when you are USING your PAP that you do NOT have when you are not using your PAP?

    Is your current sleep specialist aware of all of the medication you are taking for the ADHD, bipolar, and PTSD problems? Has the sleep specialist considered whether the dosing or scheduling of those medications could be affecting your sleep when you use the PAP?



    Quote:
    Quote:[*] When was your last sleep study?

    roughly three months ago
    Was it a diagnostic study without a mask? Or was it a titration study with a mask? Or both?

    When was the last time you had a titration study?

    Quote:
    Quote:[*] What are your complaint(s) with your previous providers?

    there has been an overall belief that a cpap cures literally all ailments. which admittedly i was very happy to hear in the beginning. but when that does not immediately solve the problem i see a lot of deer looking into headlights...
    A lot of docs are lazy. And a whole lot of docs never get around to looking at the whole person as a whole person.

    What I mean by that: Docs don't talk to each other unless you make them. So the sleep doc treats the known OSA with CPAP and isn't interested in the fact that you're dealing with a bunch of other medical conditions that can destroy your sleep and are on a bunch of medications that can cause sleep problems that are prescribed by other doctors. The other doctors don't know about or care about your OSA problems since they're treating you for ADHD or bipolar or PTSD. So they'll tell you about whether those things might affect your sleep, but only if you asked them to. Because after all, they're not sleep doctors.

    Quote:current provider - oh where to begin. i knew things were doing downhill immediately from the first visit. but my now ex gf made me promise i would do this because i snore so loudly so i did. he didn't seem overly interested in any of my symptoms or any impressions i had on anything really. he actually went so far as to all but call me a liar when i told him i didn't have weight issues until after i had been diagnosed with sleep apnea. im confident of this being true because it was actually one of the few appointments i strongly remember with my first provider because kind of a lot of semi memorable things happened in those 45 minutes-ish.
    Sheesh.

    Really---this guy does seem on the incompetent side.

    Quote:but back on topic. the current dr seems pretty stumped at present. in my last visit i wrote on the back of the questionnaire you are asked to fill out about your fatigue/concentration level prior to each visit, "i am a danger to myself and others behind the wheel of a car. it is not just possible, but very likely that i will cause an accident that will harm or kill myself or others". i also made this direct statement to the nurse and then to the dr. in person. he then brought in my most recent sleep study results from using their cpap which showed that my apnea was being addressed effectively by the machine. our argument ended when i asked if my apnea being "cured" was considered a complete success if im still too tired to physically function as a human being. while my point was begrudgingly accepted, it did irk me somewhat that i had to make it to begin with. especially after making the direct quote to him noted above.
    Was anything said about the number of spontaneous arousals?

    Was anything said about the number of PLMs?

    Was anything said about how much sleep you actually got? And how much of that sleep was Stage 1? Stage 2? Stage 3? REM?

    Those are all important questions to look at, particularly since you are still in danger of falling asleep?

    Has anybody suggested that you be tested for narcolepsy as well as OSA? Usually they won't do the narcolepsy test unless the OSA is well controlled by PAP and the excessive daytime sleepiness remains a huge issue. The narcolepsy test immediately follows an in-lab PSG (with a PAP if the person has OSA), and instead of going home in the morning they keep you in the lab. They ask you to stay awake for a period of time, and then they tell you to try to take a nap (with the PAP). They repeat this process about 4 or 5 times during the day. And narcolepsy is diagnosed if the data really does show that you are falling asleep at the drop of a hat and going into REM during those naps.

    As for possible recommendations for finding a good sleep doc: Given your oddball collection of symptoms and your 15 year struggle with CPAP not making you feel any better, you might do well to try to find a sleep clinic associated with a major research or teaching hospital. I personally don't have any experience with such a clinic so I can't make a personal recommendation.

    Questions about SleepyHead?
    See my Guide to SleepyHead
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    #8
    With your luck with doctors I'd advise against you playing the lottery. Based off of your tiredness and weight gain, have you had any blood work done lately . . . more specifically, a thyroid profile with T3 and T4?

    If your xPAP is compatible with SleepyHead, please download it and get some info for us to see just what you are experiencing.

    Here are the links to download it and how to use it.
    Compatibility List: http://www.jedimark.net/tiki-index.php?p...ed+Devices

    SleepyHead Download: SleepyHead

    Beginners Guide to SleepyHead: http://www.apneaboard.com/wiki/index.php...SleepyHead

    ______________________
    Useful Links -or- When All Else Fails:
    Posting SleepyHead Charts in 5 Easy Steps
    Robysue's Beginner's Guide to Sleepyhead
    Apnea Helpful Tips
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    #9
    Hi dolt,
    WELCOME! to the forum.!
    I'm sorry to hear that you have been through so much in the last 15 years.
    It's good you came here to get suggestions.
    I hope you can get this figured out so you can start getting quality sleep, good luck to you and hang in there for more answers to your questions.
    trish6hundred
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    #10
    (11-17-2016, 06:32 PM)Crimson Nape Wrote: With your luck with doctors I'd advise against you playing the lottery. Based off of your tiredness and weight gain, have you had any blood work done lately . . . more specifically, a thyroid profile with T3 and T4?

    If your xPAP is compatible with SleepyHead, please download it and get some info for us to see just what you are experiencing.

    Here are the links to download it and how to use it.
    Compatibility List: http://www.jedimark.net/tiki-index.php?p...ed+Devices

    SleepyHead Download: SleepyHead

    Beginners Guide to SleepyHead: http://www.apneaboard.com/wiki/index.php...SleepyHead

    Totally agree, now we have more info, this is very complicated and the sleep doc lottery will be of no use...lots of underlying medical issues that have major effects on sleep...
    you have great advise, good luck in your journey
    Storywizard
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