New here: can CPAP make symptoms worse? Also UPPP surgery scares.

[Rafaellavera]

Wow, all of you are giving me some very good perspective.

I just ordered an SD Card from Amazon to put in my Airsense 10 machine. As soon as I have a week's worth of data, download SleepyHead, I will post it on this thread and see what can be learned from the data.

Is there a thread about how to understand the data from SleepyHead?

UPPP Surgery: You are all giving me serious pause on getting the UPPP surgery. I'm thinking of calling the surgeon's office and cancelling it - especially since the improvement will not solve all of my physical problems. I really like what some of you have said about there is no going back once those tissues are removed and better to see if I can first improve the CPAP therapy and tweak whatever I can. Also, I should focus on loosing the 20 lbs I recently gained, getting more exercise and weight training in, getting my blood pressure back to a normal range and see if those things don't improve my overall health before looking at surgery.

NOT SEXY: I really hate being attached and dependent on the CPAP machine. I'm a single woman who enjoys a good, healthy social life. There's very little that is sexy about having to pull out a cpap machine at night if I want to sleep with a new partner. I was hoping that getting the UPPP surgery and later looking at getting an INSPIRE device implant that I wouldn't have to deal with a cpap machine ever again. Maybe I could make a separate post about how to maintain a vibrant singles sex life and still use a cpap machine?

I'll post the SleepyHead data in a week!

Thanks again!!!

[Pugsy]

For understanding what you will see in SleepyHead start here

viewtopic/t88983/Pugsys-PointersSleepyH ... Hints.html

and in it (especially the first post) there are additional links to some stuff others have posted that explains even more of what you will see so take the time to follow the links too.

Start with the basics though...explained in my tutorial. There's a lot of data given that you won't need to understand especially now.
Main things...AHI, leaks, pressure, events...the rest can wait.

[Jas_williams]

The machine might not be sexy, but a caring bed partner won’t care and won’t be disturbed by your snoring which is far from sexy, just saying. But I can understand the concern.

[kteague]

There's a treasure trove of old threads on the subject of relationships and cpap - you are not alone in your uneasiness. We do have a forum member who met and married a fellow cpap user.

[palerider]

Wow, all of you are giving me some very good perspective.

I just ordered an SD Card from Amazon to put in my Airsense 10 machine. As soon as I have a week's worth of data, download SleepyHead, I will post it on this thread and see what can be learned from the data.

I wouldn't wait for a week... once you're to the 'fine tuning' stage, then yeah, look at weekly averages.

But lets see what's going on initially.

Is there a thread about how to understand the data from SleepyHead?

Pugsy's pointers, up there in the announcements section.

NOT SEXY: I really hate being attached and dependent on the CPAP machine. I'm a single woman who enjoys a good, healthy social life. There's very little that is sexy about having to pull out a cpap machine at night if I want to sleep with a new partner.

Unless they're going to be sitting up watching you sleep... with the lights on... it doesn't matter if you're wearing a mask... at least you won't keep them up with snoring and snorting!

[Midwest_non_sleeper]

NOT SEXY: I really hate being attached and dependent on the CPAP machine. I'm a single woman who enjoys a good, healthy social life. There's very little that is sexy about having to pull out a cpap machine at night if I want to sleep with a new partner. I was hoping that getting the UPPP surgery and later looking at getting an INSPIRE device implant that I wouldn't have to deal with a cpap machine ever again. Maybe I could make a separate post about how to maintain a vibrant singles sex life and still use a cpap machine?

...it's getting almost to the point where a new partner might ALSO need to use a CPAP machine, given at how widespread sleep apnea seems to be. If that's the case, BONUS! Something else to talk about!

[mbushroe]

My apologies for being so long winded

To jump on the bandwagon, I have also had septoplasty and UUUP surgery before giving in and forcing my self to try cpap. The septoplasty made a huge difference in my ability to breath through my nose. I had been so limited in node breathing for so much of my life that I am still extremely anxious if I am forced to breath through my nose only in order to stay alive. Thus my very bad reaction to nasal masks, nasal pillows, etc. I had to fight for it but I eventually got a full face mask even though my pressure at that time was very low.

The UUUP is said by some to be the most painful surgery an adult can undertake. It was certainly painful for me, but memory tends to gloss over the worst parts so I can't say if it truly was more painful than knee replacement surgery. I don't remember how much the septoplasty hurt afterward but I think it was a lot less. And it is real easy to get clinically dehydrated once they send you home. And now, many years later, I still have occasional slip ups when my uvula does not close quite firmly enough or soon enough and I get something down my windpipe and have to cough it back out, plus some extra coughing to make the trachea feel certain it is gone.

The hypoglossal stimulator, as has been said above is too new to know what the long term effectiveness and problems are. One thing not mentioned is when I had an MRI earlier this week, having a hypoglossal stimulator was one of the questions. I suspect that once you have one installed you may be limited in the areas and field strengths of the MRI to avoid heating the implant or even generating current eddies strong enough to cause nerve stimulation. If you intend to go that path you should talk to the doctor about how compatible the device will be with MRIs. If you ask first you might be able to get a more MRI compatible implant, whereas if you don't find out until you need an MRI you would be stuck with trying to find some way to work around the problems. As time goes on these machines will likely become more and more compliant with even the more powerful MRI machines, so this is may go away soon, or eve be pretty much resolved now.

As for feeling bad in the morning after using the machine at night I have that problem too. I have multiple sleep disorders, including one they couldn't name and so just called it 'pathological sleep disorder'. My first sleep study, done over 20 years ago and partially manually, showed absolutely no sleep apnea, but that I never entered stages 3 or 4 of deep sleep. So I never get the healing, restorative part of the sleep everyone needs and no one has yet found a way to fix that. So the bipap help make stages 1 and 2 more effective, but does not help me get into 3 or 4 so I still wake feeling very tired. Yet most sleep doctors look only at the AHI chart and when you spend all night below 1 event per hour they feel completely successful and I have to point out to them the next chard up shows my sleep stage and it looks like a square wave, 2 - REM - 2 - RM - 2 - REM - 2, which means no deep, restorative sleep even with optimal pressures. You probably don't have the same thing, but you might have something else that does not respond to cpap use. I would talk with your sleep doctor about still feeling tired and examine more closely the rest of the charts from your last sleep study. It might show that something else is happening with your sleep besides the apnea.

As for getting worse in weight, blood pressure, cholesterol it is always possible that you were already destined to have these problems, and without the cpap they would have been even worse. Or it may be that the cpap really did cause everything else to get worse. Unfortunately, we can't run time backwards and try several different choices to see which comes out best. But Occam's razor does say that if 'B' started just after 'A' started, or 'C', 'D', and 'E' happening relatively randomly and combined together might have caused 'B', then stick with the simpler 'A' causing 'B' until better information comes along.

[gentryh]

After struggling with EDS since grade school, finally got sleep study and CPAP at age 47. I seemed to have worsened EDS/focus and concentration after starting the CPAP. I learned that I couldn't fall back asleep with the CPAP on after "re-activating" after 1-2 hours of initial sleep. Tried CBTi, the sleep restriction part made me mentally un-functional. Actigraph showed disturbed sleep, but 1st sleep doc didn't have a solution. Switched to a neurologist, diagnosed non-specific narcolepsy, and periodic limb movement disorder (index 74.. Taking xyrem, which helps me stay unconscious, and helps falling back asleep after mid-sleep awakenings. Taking Pramipexole (dopamine agonist) for PLMD, which has a measurable impact on the Limb Movements (I video my sleep every night with a security cam). Taking Gabapentin, which seems to help sleep in general. Also bumped me to BiPap 12-18, which is way more comfortable than CPAP @10.

All of these things, and still no measurable impact to EDS. I seem to also be resistant to the wakefulness drugs, tried Modafinal/Armodafinal, the slew of ADHD medications (age 43 I figured I had ADHD, so tried everything a psychiatrist would throw at it.) Nothing seems to have any effect. Caffeine was the only thing that pushed me thru til I started with the medication trials. Used to drink 6-10 diet cokes daily, until I decided that probably wasn't the best solution. And even the effect of caffeine seems to be waning. Tried anti-depressant meds, which didn't improve the EDS, or the depression (MDD or Dysthymia), which I figure started around age 12, when riding roller coasters was no longer fun.

I wonder if I am depressed because I can't sleep, or can't sleep because I'm depressed.

I did have an interesting experience to a recent colonoscopy. After the anesthetic wore off, I felt "Mentally Awake" something that I NEVER feel. For the rest of the day and evening, I was mentally alert, able to have proactive conversation, think ahead more than 10 minutes, basically, feel "normal". I should have asked what was used, but I wasn't expecting this reaction. I presume Propofol was used, which apparently has effect on the dopamine system.

I would sign up for a daily colonoscopy to feel this way.

Not sure how helpful this is to your case, but I think the take home, is there can be many other issues that are interfering with your results.

A friend who also uses CPAP told me, before my sleep study, "Dude, you will feel like Rip-Van Winkle after getting on CPAP". Instead I wish I could sleep for 20 years.

[chunkyfrog]

Surgery is often pushed, as a quick fix, even if it fixes too little.
WARNING WARNING WARNING!
I, too have been thinking of delaying surgery in favor of trying other strategies first.
This is for carpal tunnel, which previously has been transient, extremely mild, and barely annoying.
Then on 9/25, the pads on my thumb tips and first 2 1/2 fingers ---parasthesia--permanent?
After jumping through numerous hoops, I have been diagnosed and referred to a hand surgeon.
But with no reassurance it will help, because of pre-existing diabetes (they said neuropathy)
I have requested a referral to an endocrinologist--hopefully to get on an insulin pump first.
It may not reverse the neuropathy--but it should slow it down.

[Okie bipap]

I have had the surgery done on both hands as has my wife. The surgery was done with minimal cutting. We ended up with on suture in our wrist and one suture in the palm of the hand. After surgery, we were encouraged to use our hand as much as possible during the healing period. It is basically do anything you want as long s it doesn't cause pain.