Comments from sleep specialist

I had my checkup with my sleep doc a couple of days ago. I went in with a lot of questions regarding the graphs, particularly flow, minute vent. And flow lim. And his answer to that was,"don't take any notice of those, they aren't worth anything", this even when I had showed him that virtually every night the minute Ventilation was down to 1-2 and centrals clustered together alarmingly, just the same as when I posted the graphs some months back. I had also had an oximetry done which when I pressed he said showed 16 minutes of low oxygen (I don't know how that relates to percentage.) He insisted that he had not seen any positive studies for other machines helping the centrals and in any case, in the long term, they weren't going to harm me anyway so just to carry on as before. So the end result is that even though my breathing is obviously depressed, and my oxygen sats 'low', centrals still high, I wake each morning with a headache and have many arousals every night, my sleep specialist says, no worries, it won't kill you so just continue as before.

Now my situation is that the only other way to go is to lower my pain medication in the hopes that that will relieve the breathing and see what happens. I have Reflex Sympathic Dystrophy and Rheumatoid Arthritis so fewer pain meds could be interesting to say the least.

Sorry about the ramble but I have been quite upset by this appt and needed to 'out'!

Do you think my doc is right with this? Would you accept it if you were me?

I would appreciative any comments you might have.

Thanks for reading this.

Gillian

I would be looking for another doctor. It sounds like you don't FEEL improved, and you have a variety of unresolved problems that are affecting your health. Unfortunately, some doctors don't seem to care about solving them, or don't want to admit that that don't know what to do.

.

I agree with zoocrewphoto, not only are you not feeling better, but it sounds like your doc is not able to communicate well with you. I learned that unfortunately some Dr.s just do not take the time to actually help the patient, or maybe they just don't understand the true significance of how our individual experiences need to dictate our therapy. Maybe someone else with the same data numbers is fine but when someone does not feel improved I think it warrants a little closer look. Perhaps a second opinion is in line.
Also I have come to believe that the way you feel about the Dr. Can really affect the outcome of treatment. I felt ignored and brushed off by my first sleep Dr. And ended up having ineffective treatment for 5 years! mostly because i felt like it was all my fault for not being compliant, so i just gave up. Thankfully my new primary care dr. Ordered a new sleep study at a diferent office... (Also same thing with phycologyst, I bet I spelled that wrong... I spent years on one drug cocktail after another as no one bothered to look deeper and see if my depression diagnosis was correct. Guess what it was not. Ends up I have bipolar with a depresant tendancy and that can be worsened by some antidepressants. Now with proper meds things are much better)
So do not give up. If you are not satisfied keep looking for answers...

simplyme wrote:I agree with zoocrewphoto, not only are you not feeling better, but it sounds like your doc is not able to communicate well with you. I learned that unfortunately some Dr.s just do not take the time to actually help the patient, or maybe they just don't understand the true significance of how our individual experiences need to dictate our therapy. Maybe someone else with the same data numbers is fine but when someone does not feel improved I think it warrants a little closer look.
So do not give up. If you are not satisfied keep looking for answers...

Very true. Last August, I complained to my doctor that my leg was hurting. I showed it where it hurt, and what movements were okay and which caused pain. She told me to stretch more. I already stretch my legs several times a day. Over September and October, it got a lot worse, hurting every time I go in and out of the car, and to the point where it was now hurting me in the middle of the night, waking me up. I can put up with leg pain, but this was now messing with my sleep, and it was really bothering me. So, at my annual physical in November, I brought it up again. She gave me advice for how to get in and out of a car. Totally did not grasp the concept that it was waking me up several times a night. And I still had no improvement. It was just getting worse.

A few things. Patients don't always know to ask the right questions or explain the pain correctly. What I thought was leg pain was actually being caused by my hip. My mom, being older and much more experienced with various pains, figured out that it was my hip and most likely bursitis.

Next issue that the doctor may not think about. I hate taking pills. I struggle with pills that most people are okay with. My throat is narrow, and I choke and gag. When taking tylenol, I use the adult strength liquid nasty tasting stuff. I have asked for liquid forms of other medications in the past. My doctor knows that I an medication resistant. It probably never occurred to her that I don't automatically take pain medication. During those months of leg pain, I never once tried a pain reliever. Stupid, I know. But I forget that pain medications are good for more than headaches. And while I did have an occasional headache, the tylenol did not happen to work on this pain, and before November, I never bought any other type of pain medication.

The solution to my hip pain was Aleve, twice a day. I was told this by my sleep doctor, since I asked about pain waking me up at night. I really would have expected my primary doctor to tell me this.

Thank you to Zoocrewphoto, Slartybarfast and Simplyme for your comments. I think you are right that sometimes the docs just brush you off but I think what annoyed me more was his constant "I don't know".. I thought I was going to see an expert in the field, that's certainly what I paid for. He claimed that there was no research on this subject. Well I have personally read at least half a dozen that have been posted on this site! Now I am in the position where I have to interfere with my pain levels and potentially have increased pain levels as a result. But then I guess I'm the one who has to live with that.

Sorry, Slartbartfast, but I really don't want to struggle with putting graphs up again. I did do that, not so long ago and received very comprehensive advice from it. Not a lot has changed since then so can't really see the point in doing it all again. THere are so many people who do need help in that area I'd rather leave it for them. Thanks anyway.

Do any of you know how oxygen sats percentages measure up with the minutes?

Thanks

Gillian

There is a reason that you are awakening to headaches!! I ask my pts this as a characteristic of low oxygen thru the night...usually caused by OSA. CSA will do the same thing. I did not see when your PSG was done...is it time for a follow up to find out if you need a pressure adjustment. Ask your pharmacist about your medications...whether any can cause your breathing mechanism to be depressed while asleep. I have seen success getting off of some pain meds by using a device called a Tinge Unit.

Gillian wrote:Do you think my doc is right with this?

No.

Gillian wrote:Would you accept it if you were me?

No.

Do you have the new oximetry download or report?

Clearly, you are the poster girl for opiate-induced CSA and would undoubtedly benefit from ASV.

Slartybartfast wrote:Can't quite tell from the information you posted, and I'm not at all familiar with your condition, but generally speaking, centrals aren't really a problem unless there are a LOT of them, and your doc would know what that would mean. And while some manufacturers like ResMed insist that they can identify a true central apnea 95% of the time, it's probably safer to refer to them as non-obstructive apneas, since there's no way the machine can tell whether the "central" is a true central apnea with its genesis in the central nervous system, or an artifact/reflex due to the elevated pressure the xPAP machine generates in the lungs (Hering-Breuer reflex).

What's important is the number of obstructive events and your oxygen saturation. There is a LOT of information you will come across in machine data that isn't relevant to most folks' conditions, and your doc may have made that judgment knowing your particular situation.

Post some data and let us have a look.

Let me count to 10 before I respond to this...

mollete wrote:

Slartybartfast wrote:Can't quite tell from the information you posted, and I'm not at all familiar with your condition, but generally speaking, centrals aren't really a problem unless there are a LOT of them, and your doc would know what that would mean. And while some manufacturers like ResMed insist that they can identify a true central apnea 95% of the time, it's probably safer to refer to them as non-obstructive apneas, since there's no way the machine can tell whether the "central" is a true central apnea with its genesis in the central nervous system, or an artifact/reflex due to the elevated pressure the xPAP machine generates in the lungs (Hering-Breuer reflex).

What's important is the number of obstructive events and your oxygen saturation. There is a LOT of information you will come across in machine data that isn't relevant to most folks' conditions, and your doc may have made that judgment knowing your particular situation.

Post some data and let us have a look.

Let me count to 10 before I respond to this...

OK, it didn't help.

Did you READ this lady's previous comments!? There were only 23 of them. In there were these graphs:





and interestingly that was in a thread YOU responded to.

So, do you think that's

Slartybartfast wrote:a LOT of them

???

Try knocking on your Doctor's Door again.

He may not be totally aware of your concern limits.

You have to understand that he's in the business, and he may be right in his remarks, but you certainly need to keep on pursuing your questions until YOU are completely satisfied with the answers regardless of where or who gives them to you.

There's nothing wrong in questioning a Doctor, any Doctor. If anyone thinks there is then they're living in the 30's. If he's worth his salt he wants his patents to be pro-active.

Who better to look after us than ourselves?

Sounds to me that you are on the Right Track.

Have a good day,

First Reviewer

I hesitate to recommend things that are on the expensive side, but I have had such excellent relief from Accupuncture for back and hip pain that I just have to speak up. My insurance partiallly covers up to 24 treatments, and a couple should tell if you are getting relief.

delete

mollete wrote:OK, it didn't help.

LOL! Maybe next time count to 20?

To Gillian: I'm on the "you need another doctor" team. I would refuse the doctor with the absolute best grades possible if they were unable to talk to AND work with me.

I am also a chronic pain patient. Yes, narcotics cause Central Nervous System Depression. So does [insert VERY long list of things here, including cold medicines, alcohol, yada yada yada]. If you've been taking them long term and were properly titrated to the level needed to properly treat your pain, the secondary effects should have lessened with time. I'm not saying there's NO secondary effects (there's plenty), but you should be adjusting to the breathing issue with help from your machine.

Reducing the medicine level is a BAD idea, at least it would be for me. I'd be trading the inability to sleep because of xPAP related issues for the inability to sleep and do much of anything else because of pain issues. I'm not seeing that as a winning strategy.

Also, in case you don't already know this, don't trade your narcotics for NSAIDs (not long term, anyway) ... long term use of NSAIDs at the therapeutic level you'd need would likely make your kidneys very unhappy. That is how I ended up on narcotics, actually.

Tylenol in strong enough dosages is mean to your liver, and you definitely DON'T want that.

Look for a PM from me as well...

mollete wrote: . . . undoubtedly benefit from ASV.

Gillian,

That is not a statement Mollete is likely to make lightly. I would consider those key words in this thread.

mollete wrote:Do you have the new oximetry download or report?

If I were to ask you for any of that, feel free to ignore my request; I have no experience in the field.

But if Mollete has taken enough interest in your situation to ask for it--trust me: it is well worth it for you to provide it in this thread.

-----------

And on a side note, @Mollete, I would just like to say in reference to . . .

mollete wrote:Let me count to 10 before I respond to this...

. . . that it was a noble effort and seemed to provide very good results, from where I sit.