Disappointing news from Dr.

[Desperate_in_DM]

I'm not sure what I'm expecting to accomplish with this post. I just needed to vent frustrations to people who might understand as no one in my life does.

I had my initial consultation on 7/27 and my sleep study on 8/2. My AHI during the study was 27 (with only 1 obstructive, 2 central and the rest were hypopneas) and my oxygenation dropped to 85% numerous times. Started CPAP on 8/3. I had my follow-up appointment with the doctor yesterday after 6 weeks of CPAP. I'm told my numbers are great. AHI is around 0.9 now with the machine and I have no mask leaks. I am sleeping between 8-9 hours a night on average. I no longer take Provigil because it makes my irritability, rage and headaches worse. However, I feel worse today overall than I did before I started CPAP.

My titration was set at 6 initially but the doctor upped it to 9 yesterday. This morning I woke up feeling like someone beat the crap out of me in my sleep last night. It hurts to take a deep breath. Basically everything from armpits to hip is painfully sore and inflamed. I'm assuming it's due to the increase in pressure.

The doctor told me yesterday that my case was "complicated" and that he doesn't expect me to feel any improvement for at least 6 months, but he felt that it could be a year before I feel like myself. I guess I appreciate his honesty, but why would a doctor tell a patient this? Why would you tell someone who is already feeling hopeless and at the brink of losing their sanity that they might have to feel this way for another year? I'm just feeling very lost having been told this and feeling worse now than I did before CPAP.

How did you guys get through until you felt better (if you do)?

[davecpap]

Have you tried consulting a different pulmonologist/neurologist who specializes in sleep disorders? I went through three before I could find one I could tolerate.

[Emilia]

Hi! I am sorry you are feeling so frustrated. I do see some hopeful signs in what you've written.....your numbers are great! Having an AHI that low means you are getting good therapy, and sleeping 8-9 hrs a night is wonderful. The increase in pressure and the resulting 'I've been hit by a Mack truck' is somewhat normal...even with a fairly low pressure of 9. I am using an Auto machine with a range of 6-10, and I had several nights that my pressure spikes upwards to 9.7 to chase down an event. I, too, had aches and pains in my chest the next day, but those have diminished now that I have adjusted to this therapy. So, give another week and you won't have that discomfort anymore once your breathing muscles adapt to the higher pressure.

I think a good doctor should be honest with his patients. You have a complicated medical history, and he is trying to tell you it isn't going to be a walk in the park. Giving you a time frame is a good idea so you can be more understanding of the fact it isn't going to be better instantly. Normally, I would not go into this area, but have you or are you getting any type of counseling? Perhaps a professional who can help you work through the psychological issues you are dealing with? I am so sorry you don't have anyone in your life to support or understand what you are going through. It is very sad that your husband has been so unsupportive....shame on him!! Have you tried yoga or meditation to help calm yourself and become more centered? I don't want you to feel more overwhelmed with these suggestions....and they are only suggestions.

Please try to keep an open, positive outlook on your therapy....if you stick to it, you will feel better!! Keep us posted on your progress.

[Desperate_in_DM]

My pulmonologist does specialize in sleep disorders.

[Desperate_in_DM]

Our health insurance doesn't cover counseling. I am a stay-at-home-mom who is on a monthly allowance even though my husband makes quite a bit. I cannot afford counseling on my "allowance". Yoga may be a good option since I have a Y membership that is currently being unused. Yoga certainly couldn't hurt I guess. I meet with my rheumatologist soon so maybe I'll run it by him.

I was telling my husband last night that I have appts with all of my specialists in the next 2 weeks. Someone my age (34 years old) shouldn't need a pulmonologist, a rheumatologist, a hematologist, a cardiologist and a electrophysiologist!

[-SWS]

How did you guys get through until you felt better (if you do)?

As it turns out, it's not just you. This ENTIRE sleep-disorder and learning-to-use-CPAP business is a huge challenge for many of us. And somehow, just being here and having this place to vent seems to help. You're not alone by having this experience by any stretch...

Why would you tell someone who is already feeling hopeless and at the brink of losing their sanity that they might have to feel this way for another year? I'm just feeling very lost having been told this

If you're not yet seeking some type of psychological counseling for those difficult feelings, then at least consider it. Sleep disorders---and their adverse impact on quality of daily living---can be hugely challenging. As it turns out, very many of our posters find it beneficial to receive counseling toward coping with having our lives literally turned upside down.

We're here, and we feel for you. Venting is most definitely allowed on this message board. You're among many who have gone through what you're feeling.

Also, I would add that if psychological counseling is too expensive, then consider calling or visiting the social workers in your local hospital(s). They often have the inside track about where patients can receive free or reasonably priced counseling. Good luck.

[DoriC]

I''m glad you posted, and I also see some encouraging signs in your numbers although nothing matters if you're still feeling lousy. Hopefully the discomfort from the increased pressure will diminish as Emilia noted,and are you using the Flex and at what setting? That may help with exhale. Also, that's quite a jump from 6 to 9, perhaps you could raise it gradually 1cm at a time and see how you feel, or try the auto setting at 6-9cms. I don't mean to confuse you, these are just my random thoughts, I'm certainly not a Dr, just trying to help. Please keep us updated.

[Breathe Jimbo]

Do you have a pastor who would have a stern talk with your husband about his duty to support you in every way he can?

[M.D.Hosehead]

It does take different amounts of time for each of us, so persistence and patience are really necessary.

Having made that point:

I don't understand why, when your AHI went from 27 to less than 1 on 6 cm, your dr. increased the pressure to 9.

Did the Doc give you an explanation?

I'm really interested in the thoughts of the pros here.

And if it needs to be 9, I also don't see a reason why the increase can't be gradual.

You told us you slept all night on 6 cm. and were able to stop Provigil, but you didn't tell us how you felt on 6 cm. Energy, sleepiness, fatigue, mood. If those were improving, the rx. change is even more mystifying to me.

Do you have the software? Can you post a report.?

[ozij]

When my usual pressure was 6.5, and the auto raised it to 8, I would feel pain similar to what you describe.

I think the doctor was trying to help you by telling you the improvement will take time. He's not saying you have to wait with no change for a whole year, he'st not saying you might have to feel this way for another year, but he is saying "this is going to be a slow process, it''s not going to be a overnight change, so dont' let it discourage you".

[kteague]

Thinking about many more months of feeling so bad is a lot to deal with. That is not saying it will take that long for you, just that it could. Once you sort thru these emotions, consider that every day expecting the best and being disappointed is not so easy to deal with either. Your progress will be what it will be, and neither the doctor's predictions nor your expectations are absolutes. Hold the doctors to doing their part, do the same for yourself. You have done admirably in moving forward with addressing your medical issues though requiring such great effort. Continue to do all you can manage to help yourself. It helped my frame of mind when things looked so hopeless to feel at least I was not totally at the mercy of my illnesses. I think you going to the Y is an excellent idea, both for the exercise and for socialization. You just may get surprised and find out the time it takes to feel better will come sooner, or at least the time will pass faster. And the day you realize you actually are hopeful again, you can come here and tell some new struggling member how you made it to that point. May that time come sooner rather than later.

[Desperate_in_DM]

You told us you slept all night on 6 cm. and were able to stop Provigil, but you didn't tell us how you felt on 6 cm. Energy, sleepiness, fatigue, mood. If those were improving, the rx. change is even more mystifying to me.

Do you have the software? Can you post a report.?

I was sleeping all night and my AHI did decrease with 6cm. But all of my other symptoms were getting worse. He said he wanted to raise it to 9cm for a month to see if any of the symptoms lessen.

The ONLY reason we stopped Provigil is due to the increased irritability/rage and the fact that it was causing tachycardiac episodes (I have a history with arrhythmia).

As far as my husband....let's just pretend I'm a single mom to a toddler who gets a monthly check because in reality that's all the support and help I get from my husband anyway.

[Hawthorne]

Your husband is the one needs some help! If he makes "quite a bit", what's wrong with him that you have to live on an "allowance"??????

Does he give you money for the child's expensive which will be quite a bit!

I'd be irritable and in a rage too if I was in your situation!

Do you have reasons for allowing this to go on?

[davecpap]

My pulmonologist does specialize in sleep disorders.

I meant find another doctor. All sleep specialists tend to be pulmonologists or neurologists - but not all pulmonologists or neurologist know about sleep issues - I wasn't sure if yours did. Bottom line, get a second or third opinion. I gained valuable insight from each of the doctors I spoke with.

[LoQ]

The doctor told me yesterday that my case was "complicated" and that he doesn't expect me to feel any improvement for at least 6 months, but he felt that it could be a year before I feel like myself. I guess I appreciate his honesty, but why would a doctor tell a patient this? Why would you tell someone who is already feeling hopeless and at the brink of losing their sanity that they might have to feel this way for another year? I'm just feeling very lost having been told this and feeling worse now than I did before CPAP.

It's not a sentence, just a piece of information. It doesn't doom you to another year of feeling bad. You just don't know, you may find some tip on this board that would change things dramatically for you. Doctors are very smart, but they don't know everything.

As far as my husband....let's just pretend I'm a single mom to a toddler who gets a monthly check because in reality that's all the support and help I get from my husband anyway.

Brava! I have never found it helpful to get worked up over what other people are doing. I can't control them. But you DO have control over some things. You have control over how you respond to your situation. Think about the things that are in your power to change or administer. Focus your mental effort on those things.


I'm sorry for your hard time. I know I've been oxygen-deprived for at least 30 years and feel like I've lost 3 decades of life. I can't get that time back. All I can do is try to make my life better from here on out. I do feel your pain and hope that you find relief soon.

Most immediately, I think if I were you I'd back my pressure off for tonight to something a little higher than your previous pressure but much lower than 9, and start moving up more gradually to 9. When I first started therapy, 9 cm would have been hard to take. Now I can endure it quite easily. Go up gradually, and you may find that once you get to 9, it really isn't so bad.