Questioning the process....and a rant.

[SnoozyQ]

It's what I do. I analyze. I break things down and overthink them. Forgive me in advance and be easy on me.....

As I mentioned in previous posts, Neuro wants to do another sleep study and then a MSLT. The reason given was to make sure the CPAP was doing it's job (which they already acknowledged in my numbers on the data graph) and to test my daytime sleepiness.
Why? I am telling you how exhausted I am...you confirming or denying that in an uncomfortable clinical setting, making me the Bride of Frankenstein with the wires,etc, won't change that. On Monday and Tuesday, I slept from around 10 pm to noon the next day (mask on). Last night, I slept from 12:30am to 3 am then 3:30ish to 6 am (no mask out of sheer frustration).....and I feel better today than the past 2 days.I think I can confirm that's not normal without another test to tell me so.....

They were surprised that I felt no improvement with CPAP as of yet.....ok, so now what? More tests? Will another sleep study tell you why I'm still tired and how to remedy this? I doubt it--the CPAP is doing it's job. I do breathe normally. I sleep. But I'm not rested and I crave more sleep. They already mentioned "idiopathic solomnence", so they are prepared to diagnose me with "exhausted for unknown reasons". Um, how is that treatable? I don't feel as if I'm being treated, just tested...test and wait. Test and wait. For what? I can't keep going like this.I can't take it and my life is suffering.My job is suffering. I now have 'dreams' at night about losing my job and my husband leaving me....due to my lack of participation in living.
When I jumped into this process, I did so hoping for a turn around. If anything I am worse, and now have a mask to contend with.

Am I expecting too much? Am I just fatigued and cranky? I want my life back, but I don't know how to get there.

[Madalot]

It's what I do. I analyze. I break things down and overthink them. Forgive me in advance and be easy on me.....

As I mentioned in previous posts, Neuro wants to do another sleep study and then a MSLT. The reason given was to make sure the CPAP was doing it's job (which they already acknowledged in my numbers on the data graph) and to test my daytime sleepiness.
Why? I am telling you how exhausted I am...you confirming or denying that in an uncomfortable clinical setting, making me the Bride of Frankenstein with the wires,etc, won't change that. On Monday and Tuesday, I slept from around 10 pm to noon the next day (mask on). Last night, I slept from 12:30am to 3 am then 3:30ish to 6 am (no mask out of sheer frustration).....and I feel better today than the past 2 days.I think I can confirm that's not normal without another test to tell me so.....

They were surprised that I felt no improvement with CPAP as of yet.....ok, so now what? More tests? Will another sleep study tell you why I'm still tired and how to remedy this? I doubt it--the CPAP is doing it's job. I do breathe normally. I sleep. But I'm not rested and I crave more sleep. They already mentioned "idiopathic solomnence", so they are prepared to diagnose me with "exhausted for unknown reasons". Um, how is that treatable? I don't feel as if I'm being treated, just tested...test and wait. Test and wait. For what? I can't keep going like this.I can't take it and my life is suffering.My job is suffering. I now have 'dreams' at night about losing my job and my husband leaving me....due to my lack of participation in living.
When I jumped into this process, I did so hoping for a turn around. If anything I am worse, and now have a mask to contend with.

Am I expecting too much? Am I just fatigued and cranky? I want my life back, but I don't know how to get there.

I hear you, SnoozyQ! It is frustrating as "you know what" to be in the situation you're in. They tell you that you have sleep apnea and that's why you're feeling tired, so they give you a machine and you use it, your numbers seems good, yet you still feel lousy. What are you supposed to do next? I wish I had some magic suggestion that would point you in the right direction. But I don't.

But I sure do sympathize with you.

[Mary Z]

The MSLT will tell if there is a reason for your daytime sleepiness such as narcolepsy, or if you just have hypersomnia (excessive daytime sleepiness). You may need a stimulant such as Provoigil, Nuvigil, or something else. This test will help them to determine that. I admit, aftern having done one, it's a pain. Trying to stay awake doing those two hours between naps was horrible, I tried hard to do it because those were the "rules", but if doing it again I would give up and nod out in that chair. Also, my unit provided no food, so bring snacks (helps stave off boredom), a good book, if you're not a daytime TV person), and be prepared for a urine test that morning.
Good luck, ranting is good!

[Laurie1041]

It's what I do. I analyze. I break things down and overthink them. Forgive me in advance and be easy on me....Am I expecting too much? Am I just fatigued and cranky? I want my life back, but I don't know how to get there.

Hi SnoozyQ,

You have every right to question the process. By your own admission you do not feel better. Are you expecting too much? Absolutely not! CPAP is "therapeutic in up to 95% of people". The catch is that "therapeutic" means that patients on CPAP obtain an AHI of less than 5. Does this mean that 95% of people on CPAP will "feel better" and back to their former selves? I think your situation underscores that for some people this is simply not true.

If you have not already done so, I would have a full and complete physical and rule out all other possibilities for your continued symptoms. Some things that come to my mind are thyroid dysfunction, hormonal imbalance (perimenopause/menopause/postmenopause), Vitamin D and B-12 deficiencies, and ruling out depression and/or anxiety.

Remember, sleep specialists (as are any specialist) are generally speaking, have a narrow focus of practice. My suggestion is that you widen your search for an answer to the reasons why you do not feel better. All the best, Laurie

[SnoozyQ]

Mary Z,I was on Provigil 100 mg per day.....it wasn't helping at all, so he told me to stop taking it. But then said he may put me back on it at a higher dose or try Nuvigil. Why can't we try that first?
And if the naps are 20 minutes, they will find nothing....it takes me 10-15 mins to fall asleep....like you said, I'll want to sleep during that 2 hours they want me awake...

Laurie,

Thanks!

My thyroid was just tested--normal there. I called my reg. doc to have a 'fatigue panel' (that includes the tests you mentioned)done per Neuro, but they don't know what that means......so now they get to go back and forth over codes, etc.
I have long been diagnosed with depression and anxiety and both are treated with medication. Could the medication be the culprit? Possibly, but then what? Have untreated depression and anxiety? Grrrrr!

[Laurie1041]

PM me if you will. Thanks, Laurie

[LoQ]

If you already know you don't have narcolepsy, the MSLT is probably a waste of time. I am not a medical doctor, however, so view that advice with a huge amount of skepticism.

Whether the overnight study is a waste is less clearcut.

The main reason that I can find for giving a patient nuvigil/provigil is basically an admission that the doctor cannot find the real reason you are tired. I realize you've already tried it and it didn't work. Yet more evidence that those meds are not appropriate for you.

I have a couple of suggestions. My first suggestion would be that you ask for an overnight oximetry test AT HOME first. It may be sufficient to look back at your previous sleep studies to see what your SpO2 was. Several people on this board have discovered that their SpO2 needs to be kept above 95% for most of the night in order to feel right. Unless your doctor is very agreeable or very informed, that might be hard to do with his help. You may wish to pursue that on your own.

My second suggestion would be that you consider finding a different doctor at a different clinic where you might be more likely to sleep.

If you must have another overnight study, go after it to ensure that you can sleep. I recently had another sleep study. My doctor kindly agreed to leave off the wires for limb movement, since zero movements had been recorded in my previous studies and those particular wires are very disruptive to my sleep. Some of the wires you will have to put up with, but those might be left off if you're pretty sure you don't have trouble with those kinds of problems.

Since you are good at analyzing, analyze exactly what makes it difficult for you to sleep, and do as much as you can to fix those problems. I need my hair to be a certain way under the headgear, so I explained that to the tech before he glued the wires to my scalp. I need my own pillow, so I brought it. Those kinds of things that you can fix should all be solved.

Finally, ambien helped me tremendously in getting to and staying asleep at my last study. I would NEVER want to do another study without ambien. If you are not used to taking it, you probably should arrange to have the study on a night when you can have the next day off of work if you have ambien.

[DoriC]

Yes, my husband was prescribed Ambien for the sleep study and took it for a few weeks during the adjustment period at home. I eventually was prescribed it short-term as well because as the caregiver I was anxious and "on guard" all night and not sleeping at all. It helped a lot. I'm not a doctor but I'm a believer in whatever it takes. Keep us posted.

[SnoozyQ]

I've been on Ambien as well. I felt too much 'hangover effect' the next day, even at smaller doses. So I stick with Ativan, which seems to be the only thing that agrees with me....but I was told it could cause my muscles to relax *too much*.....

[HoseCrusher]

Keep in mind that obstructions can cause your blood O2 levels to drop, causing problems with sleep. However, this is only one aspect of sleep disorder. Using a pulse oximeter will tell you if you are "obstructed" or not, but simply having high O2 saturation may not take care of all your sleep problems.

It will surely help, but it may not be the total answer.

After you confirm that your xPAP is working and you have good O2 saturation, then you move on to explore lifestyle (including diet, exercise, stress management, and so on) and the possibility of other physical and/or medical issues.

I think that part of the problem and perhaps the reason why people get run around treatment is that the medical profession is able to detect problems, but in many cases they don't have a treatment solution.

[Emilia]

It is a bit humorous that your doc doesn't know what a 'fatigue panel' is... where is the common sense here? Ordering blood work for vitamin D, B12, Adrenal function, cortisol levels, and any others that are related to fatigue should not be difficult. The Dx code for the script would only need to indicate chronic fatigue.

You have a rather complex medical history so I would defer to the medical pros, but helping them along with being sure you are tested for those things YOU want tested will help the process, IMHO. I often stand my ground and steer my doc to check things she might not have wanted to check. If I hadn't been firm about the vitamin D testing, she would not have suggested it.... vitamins aren't generally on medical doc's radar. In my case, my D was super, super low.... and now I am being treated to bring that up into the normal range (60-80). I am sure this is one of the main reasons I am still not feeling particularly energetic in spite of my excellent cpap results.

Best wishes for some results soon!!

[LoQ]

I have long been diagnosed with depression and anxiety and both are treated with medication. Could the medication be the culprit? Possibly, but then what? Have untreated depression and anxiety? Grrrrr!

Well maybe if you start to get more restful sleep and have more energy, the depression and anxiety would abate. In that case, you might not need those medications. You're going to have to figure out, if you don't know already, what is causing the depression and anxiety. If it is something other than lack of sleep and energy, you'll probably have to look elsewhere for an answer, though it might be worth reviewing your medication with a doctor to see if any of it can be swapped for a better medication for your situation.


I also wanted to point out that to a certain extent, PAP therapy can make you sleep worse for a while, until your mind and body get used to this strange beast on your face and stop fighting it. It is common for people to feel worse before they get better. This is one of those things where you must fight through it. I did it by refusing to allow negative thoughts about the therapy to make themselves at home in my mind. Other people wear the mask while awake for part of the day. Find something that works for you.

[robysue]

SnoozyQ,

First I just want to let you know you're not alone: I've been using my CPAP faithfully every single night for the entire time I'm asleep for almost 9 weeks and I'm actually feeling worse than I did before starting CPAP---and this is with every indication that the S9 is doing it job since my AHI's have been averaging somewhere around 1.0 to 1.5.

After numerous trips and conversations with my PA, the PA and the sleep doctor ordered yet another sleep study for me too---it happened last night. They did a bi-level titration. Won't know anything for another week, but given how lousy I slept, I don't want to predict what they'll say next. Clearly in my case there are a large number of spontaneous arousals that are not associated with breathing abnormalities and are not associated with limb movements that are continuing to make it difficult for me to get a good night sleep. Maybe that's the case for you too? In that case, maybe that's why they want to do another sleep study---to figure out if there's something else identifiable that's fragmenting your sleep that might be addressed in some fashion. Perhaps a change of pressure or a change of machine?

Good luck in your goal for a decent night's sleep and Happy Thanksgiving!

[djr1215]

Mary Z,I was on Provigil 100 mg per day.....it wasn't helping at all, so he told me to stop taking it. But then said he may put me back on it at a higher dose or try Nuvigil. Why can't we try that first?
And if the naps are 20 minutes, they will find nothing....it takes me 10-15 mins to fall asleep....like you said, I'll want to sleep during that 2 hours they want me awake...

Laurie,

Thanks!

My thyroid was just tested--normal there. I called my reg. doc to have a 'fatigue panel' (that includes the tests you mentioned)done per Neuro, but they don't know what that means......so now they get to go back and forth over codes, etc.
I have long been diagnosed with depression and anxiety and both are treated with medication. Could the medication be the culprit? Possibly, but then what? Have untreated depression and anxiety? Grrrrr!

Medication could be the problem, it was for me. Not depression and anxiety but blood pressure medicine. Because of other issues the cardiologist changed my BP meds at around the same time I was diagnosed with OSA. I had not had excessive tiredness or sleepiness prior to starting CPAP so I attributed it to getting used to it. But I kept getting more tired and more sleepy. The sleep doc said I was probably just one of the 10% who still have tiredness with CPAP and he gave me a prescription for Nuvigil (which I couldn't take because of previous A-fib). My GP ran thyroid, AIC and other tests and ruled out those issues. Then he mentioned that the biggest complaint he gets from people taking the BP med I was on was excessive tiredness. My cardiologist changed that and I feel more normal than I have in nearly a year.

[sandyhay00]

definetly check out your vitamin d levels. it seemed to help me/