Looking for feedback/feeling crappy

Hi Everyone:
I’ve been using CPAP now for over a year. I was on this site a lot at first and thank you again for all your help. I just wanted to check in and say that after over a year of compliance and finding the right pressure and mask I don’t feel much better. I guess the big picture is that my brain is less foggy, my memory is somewhat better but not great. My aches, pains, headaches and everything else are variable but as bad as they were before. I actually developed chronic migraines a year ago, about 3 months into CPAP therapy. I get Botox but now it’s not working so well. I’m going back on Topamax tomorrow. That is not going to be good for my brain. I’m dopey enough.
I’m tired all the time. I may fall asleep at my desk less often but still not a good feeling to carry around all day. There is a level of fatigue and tiredness that I can’t explain except to say it is in the realm of exhaustion. My AHI is almost always under 1. I’ve even had an AHI of 0 recently. Back in the beginning of my therapy, after telling the NP at the pulmonologist that I was aggravated that they didn’t care to even look at any of the reports I was told to find a therapist. NICE! Well, I did anyway and hey, therapy is great for what it is but I still feel like crap.
I’m still working but feel that I am not working at my full potential and I don’t have the confidence because I’m always afraid I’ll mess something up due to the fatigue and brain fog. Like I said, it’s better but I’m not where I’d like to be.
I’ve had every almost blood test known to man over the years to try to explain this. I have been diagnosed with Fibromyalgia. I was sold a bill of goods that once the OSA was under control everything else would be better but it’s not. Has or is anyone else experiencing this?
I am always seeking answers but I’m tired of this game. I just want to feel better.

Have you considered trying a full face mask in case you've begun mouth breathing at night? Happens to lots of us as time passes and we lose therapy air that way... not getting much treatment of course.

These sentiments are unfortunately quite common.

Though the xPAP keeps the airway splinted open, it certainly by itself does not assure a restful and recuperative sleep episode. There are always going to be other factors, and in my studies I have found six that seemed to be constantly presenting themselves. The clients had perfect download statistics, but still felt tired.

Sleep timing was number one. Not turning in at about the same time every day or taking power naps longer than an hour. Sleep environment (quiet, dark, pleasant smelling) was number two, stress - three, chronic pain - four, your own awareness of the severity of your sleep apnea came in at five, and last was physical activity level.

These are of course generalities, and may not apply to your situation. From the perspective of observing successful and unsuccessful xPAP use though, these things were very significant.

Hope that helps, good luck!

Hi Snorkel -- Fibromyalgia is associated with disrupted delta (deep stage) sleep. I haven't kept up with the research on this lately but historically there has been debate about whether fibromyalgia causes the disrupted sleep pattern, or if the intrusion on slow wave sleep is what causes the symptoms of fibromyalgia. In any case, if you do have a deficiency or disruption of deep stage sleep it could explain why even though you no longer have sleep disordered breathing you are still having unrefreshing sleep and feeling poorly.

I've been on this therapy for a year and a half and I also continue to have terribly unrefreshing sleep. Like you, I've had tons of medical tests with no definitive results. And, like you, I do have a known medical condition (generically referred to as dysautonomia) but exactly how it might be affecting my sleep issues is very unclear. I too was anticipating some improvement in my health and physical feeling of well-being once I started on cpap, and I got my therapy dialed in very quickly to AHI's of .1 and .2, with frequent zeros, on a consistent daily basis. But a year and a half later I'm still utterly exhausted and have to push through each day.

I wish I had answers for you and for myself. I'm curious if your doctor has brought up the subject with you of how fibromyalgia can be related to altered sleep patterns. Hang in there and please keep us posted if there's news. Feel free also to PM me if you want to e-talk more.

SnorkelPuss,

Are you in a position to consult with Dr. Avram Gold in NY, a sleep medicine specialist who has worked with alot of patients with fibromyalga? If you aren't, perhaps the office could suggest someone nearby for you to work with.

My heart really goes out to you. It sounds like your doctor's office has no clue as to how to help you as it seems suggesting a therapist for you to see is sidetracking the issue.

49er

SnorkelPuss wrote:Hi Everyone:
I’ve been using CPAP now for over a year. I was on this site a lot at first and thank you again for all your help. I just wanted to check in and say that after over a year of compliance and finding the right pressure and mask I don’t feel much better. I guess the big picture is that my brain is less foggy, my memory is somewhat better but not great. My aches, pains, headaches and everything else are variable but as bad as they were before. I actually developed chronic migraines a year ago, about 3 months into CPAP therapy. I get Botox but now it’s not working so well. I’m going back on Topamax tomorrow. That is not going to be good for my brain. I’m dopey enough.
I’m tired all the time. I may fall asleep at my desk less often but still not a good feeling to carry around all day. There is a level of fatigue and tiredness that I can’t explain except to say it is in the realm of exhaustion. My AHI is almost always under 1. I’ve even had an AHI of 0 recently. Back in the beginning of my therapy, after telling the NP at the pulmonologist that I was aggravated that they didn’t care to even look at any of the reports I was told to find a therapist. NICE! Well, I did anyway and hey, therapy is great for what it is but I still feel like crap.
I’m still working but feel that I am not working at my full potential and I don’t have the confidence because I’m always afraid I’ll mess something up due to the fatigue and brain fog. Like I said, it’s better but I’m not where I’d like to be.
I’ve had every almost blood test known to man over the years to try to explain this. I have been diagnosed with Fibromyalgia. I was sold a bill of goods that once the OSA was under control everything else would be better but it’s not. Has or is anyone else experiencing this?
I am always seeking answers but I’m tired of this game. I just want to feel better.

SnorkelPuss wrote:Hi Everyone:
I’ve been using CPAP now for over a year. I was on this site a lot at first and thank you again for all your help. I just wanted to check in and say that after over a year of compliance and finding the right pressure and mask I don’t feel much better. I guess the big picture is that my brain is less foggy, my memory is somewhat better but not great. My aches, pains, headaches and everything else are variable but as bad as they were before. I actually developed chronic migraines a year ago, about 3 months into CPAP therapy. I get Botox but now it’s not working so well. I’m going back on Topamax tomorrow. That is not going to be good for my brain. I’m dopey enough.
I’m tired all the time. I may fall asleep at my desk less often but still not a good feeling to carry around all day. There is a level of fatigue and tiredness that I can’t explain except to say it is in the realm of exhaustion. My AHI is almost always under 1. I’ve even had an AHI of 0 recently. Back in the beginning of my therapy, after telling the NP at the pulmonologist that I was aggravated that they didn’t care to even look at any of the reports I was told to find a therapist. NICE! Well, I did anyway and hey, therapy is great for what it is but I still feel like crap.
I’m still working but feel that I am not working at my full potential and I don’t have the confidence because I’m always afraid I’ll mess something up due to the fatigue and brain fog. Like I said, it’s better but I’m not where I’d like to be.
I’ve had every almost blood test known to man over the years to try to explain this. I have been diagnosed with Fibromyalgia. I was sold a bill of goods that once the OSA was under control everything else would be better but it’s not. Has or is anyone else experiencing this?
I am always seeking answers but I’m tired of this game. I just want to feel better.

Comment,

I am not familiar with your case. In this OP of your I read about a few symptoms that you have such Fibromyalgia, Headache, fatigue and tiredness, and AHI at low range, etc. You don't say what kind of Sleep Disorder you're suffering from such as plain OSA syndrome or Central Sleep Apnea syndrome and it's variations, or may be UAR Syndrome (incudes flow limitations and RERAs)? Each of these diseases is distinct and require a somewhat different treatment. Have posted about it somewhere else?

I've been on my cpap for about 5 months now and I still have a lot of the same problems too. About the only times that it isn't like that is when I force myself to pay attention or I'm out with people. Three things I could think you might look into:

1) Do you take any sleep meds? If so stop, if not try?

2) Have you tried a new mattress or a mattress topper?

3) Have you asked your sleep doc about a possible narcolepsy test?

Avil - she said she has OSA in her note.

CpapVal - just a thought as you're new... we generally don't recommend e.g. check ups for narcolepsy (relatively unlikely and can be scary to some), or tell them outright to stop their meds (we're not MDs), or even suggest mattress toppers as a first line of advice unless they are directly referenced by the poster or something they said points more specifically at them... we''re more likely first to try finding out more info on how Cpap is being tolerated, what pressures are, sleep habits, and what software reports say, etc.. I know I was full of 'advice' when I started out til I realized how much I didn't quite know yet so waited a bit before commenting to get a feel for things (and still mess up a lot!).

SnorkelPuss wrote:Hi Everyone:
I’ve been using CPAP now for over a year. I was on this site a lot at first and thank you again for all your help. I just wanted to check in and say that after over a year of compliance and finding the right pressure and mask I don’t feel much better. I guess the big picture is that my brain is less foggy, my memory is somewhat better but not great. My aches, pains, headaches and everything else are variable but as bad as they were before. I actually developed chronic migraines a year ago, about 3 months into CPAP therapy. I get Botox but now it’s not working so well. I’m going back on Topamax tomorrow. That is not going to be good for my brain. I’m dopey enough.
I’m tired all the time. I may fall asleep at my desk less often but still not a good feeling to carry around all day. There is a level of fatigue and tiredness that I can’t explain except to say it is in the realm of exhaustion. My AHI is almost always under 1. I’ve even had an AHI of 0 recently. Back in the beginning of my therapy, after telling the NP at the pulmonologist that I was aggravated that they didn’t care to even look at any of the reports I was told to find a therapist. NICE! Well, I did anyway and hey, therapy is great for what it is but I still feel like crap.
I’m still working but feel that I am not working at my full potential and I don’t have the confidence because I’m always afraid I’ll mess something up due to the fatigue and brain fog. Like I said, it’s better but I’m not where I’d like to be.
I’ve had every almost blood test known to man over the years to try to explain this. I have been diagnosed with Fibromyalgia. I was sold a bill of goods that once the OSA was under control everything else would be better but it’s not. Has or is anyone else experiencing this?
I am always seeking answers but I’m tired of this game. I just want to feel better.

How much sleep do you get?
What are the pressure settings on your machine?
Are you leaking your therapy air out your mouth while you're sleeping?


Den

.

Julie wrote:Avil - she said she has OSA in her note.

CpapVal - just a thought as you're new... we generally don't recommend e.g. check ups for narcolepsy (relatively unlikely and can be scary to some), or tell them outright to stop their meds (we're not MDs), or even suggest mattress toppers as a first line of advice unless they are directly referenced by the poster or something they said points more specifically at them... we''re more likely first to try finding out more info on how Cpap is being tolerated, what pressures are, sleep habits, and what software reports say, etc.. I know I was full of 'advice' when I started out til I realized how much I didn't quite know yet so waited a bit before commenting to get a feel for things (and still mess up a lot!).

Julie,

CpapVal wasn't totally off base in my opinion as if you are taking meds and having sleep difficulties, it is a good idea to check and see if they may be a culprit. But yes, stopping meds outright is never a good idea even if it turns out they are effecting sleep in a negative way.

Regarding the possibility of having narcolepsy, I am perplexed as to why it would be inappropriate to suggest that. I do realize in many cases, what looks like the condition really isn't once the apnea is treated.

But in some cases, it may be as I definitely had some symptoms that sounded like it could be a possibility. Thankfully, my sleep doctor went through it with me and we both agreed it was unlikely I had it. I am relieved I can finally put that to rest as the issue of whether I could have it or not was weighing more on my mind than the diagnosis itself.

I am not sure what point I am trying to make except to say when someone is experiencing unusual situations like Snorkel Pus seems to be dealing with is sometimes "an out of the box" suggestion might be key. Not usually but you just don't know. As long as people put it in terms of double check with your doctor, I guess I don't see the harm of the advice.

Hopefully, SnorkelPus can get her situation straightened out as I really feel for her.

49er

Well, I suppose you are also right - anything's possible, but I just thought that off-the-top advice re toppers and narcolepsy was a little out there as far as 'the usual' goes (not wrong, but red herring-ish) and no real symptoms of narcolepsy had been noted except for ongoing tiredness, which so many here claim to have so much of the time. I'd be more inclined to see if she's had her thyroid checked recently, or look more closely even for centrals, or medication effect of some kind rather than jump to true narco, which is really not that common even on a forum like this.

Hi,

You might be interested in this article.

http://chriskresser.com/chronic-fatigue ... -treatment

As usual, take what applies and discard the rest.

49er

SnorkelPuss wrote:I actually developed chronic migraines a year ago, about 3 months into CPAP therapy. I get Botox but now it’s not working so well. I’m going back on Topamax tomorrow. That is not going to be good for my brain. I’m dopey enough.

It's a shame the Botox is not working so well. And I empathize with your mixed feelings about going back to the Topamax. Did the Topamax control the migraines? And just how bad were the side affects that led to your discontinuing the drug? I've done two trials of Topamax myself; the second time was on a time released version (trade name Trokendi) which was much more tolerable, but end the end I still had to come off of it due to how it was affecting my stomach and intestines and bowels. Still, you might do better on the time released Trokendi version of topiramate, which is the drug in Topamax.

You also write:

I have been diagnosed with Fibromyalgia.

What if anything has the doctor prescribed for the fibromyalgia? It's going to be important to get the pain and fatigue caused by the fibromyalgia as well controlled as possible. And as kaiasgram has pointed out, there's some evidence that fibromyalgia can mess with the sleep cycles, and that can cause nonrestorative sleep.

You also write:

I’ve been using CPAP now for over a year. I was on this site a lot at first and thank you again for all your help. I just wanted to check in and say that after over a year of compliance and finding the right pressure and mask I don’t feel much better. I guess the big picture is that my brain is less foggy, my memory is somewhat better but not great. My aches, pains, headaches and everything else are variable but as bad as they were before.
...
I’m tired all the time. I may fall asleep at my desk less often but still not a good feeling to carry around all day. There is a level of fatigue and tiredness that I can’t explain except to say it is in the realm of exhaustion. My AHI is almost always under 1. I’ve even had an AHI of 0 recently. Back in the beginning of my therapy, after telling the NP at the pulmonologist that I was aggravated that they didn’t care to even look at any of the reports I was told to find a therapist. NICE! Well, I did anyway and hey, therapy is great for what it is but I still feel like crap.
I’m still working but feel that I am not working at my full potential and I don’t have the confidence because I’m always afraid I’ll mess something up due to the fatigue and brain fog. Like I said, it’s better but I’m not where I’d like to be. (emphasis added)

I want to point out that you say the CPAP is making a positive difference in how you are feeling, but it's just not a big of a difference as you were expecting or hoping for.

It could be (probably would be) the case that if you were not using the PAP that you'd be feeling much worse than you currently are feeling. Because you'd be adding the untreated OSA affects/symptoms to those that are being caused by the chronic migraines (that are not fully under control) and the fibromyaglia.



In other words, the CPAP is managing your OSA (quite nicely with those AHI numbers), but you still feel crappy because the things that are making you feel crappy are not directly related to untreated OSA. You're still feeling crappy because the migraines and fibromyalgia are causing the pain, the exhaustion, and (probably) negatively affecting the quality of your sleep, which in turn adds to the brain fog and the daytime sleepies and even more pain and more exhaustion.

I was sold a bill of goods that once the OSA was under control everything else would be better but it’s not. Has or is anyone else experiencing this?
I am always seeking answers but I’m tired of this game. I just want to feel better.

It's a shame that you were led to believe that getting the OSA under control would make everything better. The thing is, for some people all the daytime symptoms (including some chronic pain) really are directly caused by the untreated OSA, and once the CPAP takes care of that, they start to feel (much) better fairly quickly. But for those of us with other conditions that can cause chronic pain and/or affect the quality of our sleep, the CPAP can only do so much: It takes away only one of the causes of why we're feeling so bad. And until all the other causes are also well managed, we're likely to continue to feel poorly in spite of using the CPAP every single night, all night long. The thing that's hard to remember is that we'd feel even worse if we quit the PAPing.

My advice is to have some long chats with the docs who are treating the migraines and fibromyalgia. Ask a lot of questions about the treatments they're prescribing for those things. Be as proactive in your treatment of these issues as you have been with your treatment of the OSA.

I don't know much about treating fibromyalgia. But I do know that treating chronic migraines can take a lot of effort and (unfortunately) patience. There are a whole lot of different drugs out there used to treat chronic migraines as well as a whole lot of different drugs used as "rescue" meds for the killer migraines that get through the prophylactic drug defenses. If the Botox is not working and the Topamax is not tolerable, you need to try something else. You need to talk a length with the headache doc about what other things you can try. And as silly as it sounds, you might also ask the headache doc about whether to take some massive doses of riboflavin (vitamin B2) along with magnesium and folate. After I washed out of three different prophylactic meds, the PA in my headache doc's office suggested a genetic test and the vitamins. They've worked about as well as the precription meds and with no real side affects.

I should have clarified when I suggested stopping or starting taking 'meds.' I was meaning some sort of sleep aid, not like heart meds or something. That would obviously be something I would not suggest.

You could even try taking something natural at night such as chai tea or a hot totty? Something that would calm you down and maybe tell your body "Alright, we're going to sleep soon."

cpapVAL wrote: You could even try taking something natural at night such as chai tea or a hot totty? Something that would calm you down and maybe tell your body "Alright, we're going to sleep soon."

Chai tea = caffeine (unless you're lucky enough to find a decaf version_
hot totty = hot toddy = alcohol

And both caffeine and alcohol are bad for sleep.