Need advice please......

I have been on cpap since the first part of January. I was also told by my Doc. that he is suspicious of narcolepsy too. Some of the testing indicated it. He said that he wanted to treat the apnea first and see how I feel and then move on to see if the narcolepsy was bad enough to treat with meds. I have an appointment on Wednesday and here is the problem - I don't feel that much better since on cpap. Some days are better than others, but I don't feel "alive" and "refreshed" like others post. He is going to want to put me on meds and I really don't want to go on more meds, so should I ask to have a few more months of cpap to see if I get better, or do I need to surrender and take meds????? Any suggestions or experiences would be so appreciated.

Hi Kelly.

As you might have read also, some people may take longer than 30 days. I've read someone say it was 6 months for them. I am responding to therapy really well, even tho some days I feel a bit tired and others feel like I could run a marathon.

Are you watching your AI and leaks? Are you mouthbreathing and missing out on therapy because air is not preventing your apneas? Would bipap be better for you? Two months may not be the timeline to make conclusions.

-Rich

I know, no leaks, since I practically tape my mouth shut, also, why is it that the dme thinks I also should have noticed a diff. by now? I talked with them this a.m. and I am getting a pulse/ox to see where I am at, and then go from there. My husband thinks that I am expecting too much and that someone my age (37) needs to realize that I'm not going to feel the energy of a 25yr old anymore.....I don't know what to think about anything at this point.

Hi, first I think you haven't tried it out long enough at all to come to any conclusions yet, and second, things like whether or not your mask fits well without leaks, how long you sleep for at night, whether you wear the mask for daytime naps, etc. all can be important in feeling better. Your machine does not allow you to read your own statistics and see what's happening each night (as the Respironics machines do, using a 'smart card' and computer software to read your hours of use, number of apneas, mask leak and/or machine compensation for leaks, etc, and your ability to do so would be more helpful, though you now have the machine you have, unless you are able to change it for another one. The Swift may be perfect for you, though your 'sleep debt' of longstanding may not yet have been repaid (to your body), but it may not be the best mask, especially if you're a mouth breather when sleeping, in which case possibly a full face mask might be a good idea (it doesn't cover your whole face, is just a bit longer than a nasal mask, enough to cover your mouth) so you don't lose all the 'good' air overnight. You might want to discuss some of this with your MD, or at least get referred to a sleep doc (vs GP), and/or try another mask type and/or get a machine with software read-out capability.

Kelly wrote: . . . I am getting a pulse/ox to see where I am at, and then go from there.

Good plan, Kelly. Be sure to get a copy of the oximeter results, either an overnight chart or minute-by-minute breakdown, so that you'll know for sure how your oxygen levels are changing. Don't just accept the DME's word that everything's OK. If they won't give you that info directly, make sure they provide it to your doc and then get a copy from him.

Kelly wrote:My husband thinks that I am expecting too much and that someone my age (37) needs to realize that I'm not going to feel the energy of a 25yr old anymore.....

I'm not sure I feel all that much different from when I was in high school . . ., and I'm a lot older than you . . . Of course, I didn't have all that much energy in high school . . .

Regards,
Bill

Kelly,

It can be hard to know if one is expecting too much too soon or if something is just not working effectively. Even harder with no data readily available.

I was told the same thing as you were regarding treating the other issues then checking residual sleepiness to see if further treatment was needed. It was amazing to me how many of my seeming narcolepsy symptoms improved or went away as I began to get better sleep. It remains to be seen if everything is resolved when my OSA and PLMD are therapeutically treated.

I agreed when Cleveland Clinic told me that they could not accurately diagnose or treat for narcolepsy unless I was regularly getting a minimum of six hours sleep per night. I did take Provigil for a while to help with daytime sleepiness as I addressed the issues. Whether you take medication or not I guess depends on the severity of your symptoms and what is required of you during your waking hours. What helped me was unrestricted sleep until one day I woke up and felt I could rejoin the world. That approach might not be good for one who has any difficulty falling asleep at bedtime, has clinical depression, or is truly narcoleptic and their sleepiness stems from that.

Since you are under a doctor's care, I'm assuming you have already been checked for hypothyroid and diabetes?

Best wishes that before too long you'll be functioning at a level appropriate for your age.

Kathy

I have been on xPap for 2 1/2 years.

Never knew for sure if I was really feeling that much better, until machine up a died two weeks ago. As I drag through the day, I know it NOW!!!!

Sometimes the change is so subtle you can't be sure. Good case for someone to be reading your results.