"please keep me updated about oximeters "
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Inquiring minds want to know: why doesn't she use her equipment?
In 2007, I started seeing a sleep doctor. I was referred due to my issues with zonking in and out all day. This is still going on today.
Started with a cpap machine, which was okay, I was using it fairly regularly. My husband was also diagnosed with severe sleep apnea, so he started with a machine at the same time. We both have severe apnea, but his was worse than mine, because the doctor called him to come get his equipment asap, because "she was worried about him."
2 years ago, I tore the meniscus in my knee. The pain was incredible, added to RLS and insomnia, it made for many many fun nights. I could not get in and out of bed, so I started sleeping on the couch in the basement. Even after surgery, I stayed on the couch. Left the CPAP machine and all its attachments in the bedroom.
My hubby and I always used to go and see the sleep doc together. At some point, my hubby asked if there was any alternative to the cpap, as it wouldn't ever help me if I didn't use it. At this point the doc said to me in a very terse tone of voice, "well maybe if you lost 100 lbs, but that probably won't happen." At this point the doc decided it would be better if she saw me and my hubby at different times. I have to say, I was so pissed off that I didn't see her for several months.
When I finally did go back, she scheduled me for a sleep study. I kept missing the follow up appts. I got back there finally, and the doc switched me to a bi-pap machine, but there was still the issue of the air blowing in my eyes, making me nuts. Plus, I kept complaining to her about all the pain I was in at night, my insomnia like behavior due to the pain issues, and her answer to me, "use your machine and you will be fine." You don't have restless legs either. Yeah right 2 other doctors have already told me I do.
The first appt after she gave me the bi-pap, it was very much like a driveby doctor appt. I may as well not have even gone, she just looked at the data from the stupid machine and said, "I'll see you in three months after you start using your machine. "
She wouldn't see me again. When I left that day I decided it was definitely time for a new sleep doc. I was sent a copy of the records. When I read things like "this patient would benefit from the use of provigil, but I will wait with that until she starts using her machine." WHAT???? And what happens if I get into a car accident because I fell asleep while driving, because the doctor is withholding from me medication that I need, that she acknowledges I need, but isn't going to give me because I should be punished for being a bad girl and not using my machine?
I changed primary care doctors, and the new primary has referred me for pain management as well as a new sleep doc. As the pain is slowing getting managed, sleep is becoming more of a regular occurrence for me. Probably due to the pain meds. I'm trying to avoid the hydrocodone as that makes the apnea worse. I tried moving the machine down by the couch, but it still doesn't work for me.
A good example of my crazy sleeping schedule, today is Thursday, the last decent sleep I had (more than a 1/2 hour catnap in my book) was probably Tuesday night.
So, hope that explains stuff a little. --MaZ
Views: 108
Replies to This Discussion
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Permalink Reply by Mary Z on
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MaZ, maybe we can help with why the machine is not working for you. What seems to be the problem, besides air blowing in your eyes. Thanks for the expalnation.
By the way, I go to a Pain Management Center because of chronic pain in my legs I would not sleep at all with out the hydocodone. I know it's a tradeoff, but I've got to sleep without waking up everytime I move.
Also, if you do have weight to lose getting your treatment going may help with that. Many people find they have more energy once they are compliant with treatment and feel like being more active or just seem to lose on their own.
Good luck with the new doc, maybe they won't withhold the Provigil from you.
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Permalink Reply by MaZ the purple princess on
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I know, it sounds like I'm full of excuses.
The pain is very real as I'm sure you can relate to. I work a customer service job, I cannot be incoherent at anytime, the hydrocodone makes me feel like a zombie too, but worse, I'm out of it and can't think straight.
Last night was the first night I slept all night without the aide of some sort of drugs; and I was able to keep the mask on all night.
Losing weight is next to impossible. My hubby and I stick to the diabetic diet, and neither one of us has been able to lose weight. I'm minus my thyroid too which complicates matters even further, my primary has referred me for bariatric surgery.
We'll see what happens. :o)
MaZ
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Permalink Reply by Janknitz on
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When you're dealing with pain and medication issues, it's really hard to add CPAP to the mix, but it sounds like you are starting to have some success with getting your pain and RLS under control and finally able to sleep with CPAP. If there's something that's bothering you in particular with CPAP that we might be able to help by suggesting some tweaks, by all means let us know what is bothering you.
You should be aware that most ethical bariatric surgeons won't even think of touching you until you are compliant with CPAP--you are at great risk of respiratory failure otherwise.
One thing in particular stood out out to me in your initial post. You said "I was using it fairly regularly". What that indicates to me is that even in the beginning, without the additional knee problems that later started to plague you, you had not made the committment to yourself to really use your CPAP. So when the problems with your knee came along, it was a great excuse not to use the CPAP anymore.
You can't hope to have success with this unless you make the committment to use it EVERY time you sleep, ALL the time you sleep. Every time you let yourself even take a short cat nap without CPAP you are telling yourself and your body it's OK to sleep without CPAP, and the truth is that it's NOT. It's much harder to put the mask back on and keep trying when you just as easily can let yourself sleep without it. Your body has to be trained that bed/couch and sleep means CPAP.
Besides the fact that this may actually help you feel better, there is an added bonus. To me, the CPAP mask has made me become like the bell to Pavlov's dog. I put the mask on, I sleep. I fall asleep literally within seconds of putting it on and stay asleep all night--something I was never able to do in my life before CPAP where it would take hours to fall asleep since childhood, and as an adult I could rarely stay asleep all night.
Imagine waking up feeling so comfortable--like floating on a cloud. That's how I wake up most mornings on CPAP, it's like the best drug around. This did not happen easily or overnight. I had to work really hard to tackle all of the annoyances of CPAP before things started to feel this way, but it was worth it.
So keep up the good work of sleeping in the mask all night, every night. And let us know if we can help.
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Permalink Reply by sleepycarol on
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I am sorry you feel that things aren't working for you.
Attitude is everything and as long as you tell yourself it is okay to not use it -- you have set yourself up for failure.
I have chronic pain due to inherited degenerative disc disease. I have diabetes, asthma, high blood pressure. During my sleep study I had enough leg movements that the doctor said that I had RLS and wanted to put me on Requip. I am overweight well over 100 pounds.
I knew that I was sick and tired of being exhausted. I made a commitment to myself to use my machine each and every night no matter what. Is it fun? No! Is it a hassle? Yes!! I feel better controlling the apnea so use my machine each and every night.
As far as the doctor prescribing you Provigil I would have to agree with the doctor if you are unwilling to use your machine why should she prescribe a powerful drug (that is expensive as well). I know this seems hard hearted, but it is up to you to help yourself.
I recently broke my nose, and it hasn't been a piece of cake, but believe me I have used my machine every night despite the pain and swelling.
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Permalink Reply by RockRpsgt on
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Carol the trooper! :)
sleepycarol said:I am sorry you feel that things aren't working for you.
Attitude is everything and as long as you tell yourself it is okay to not use it -- you have set yourself up for failure.
I have chronic pain due to inherited degenerative disc disease. I have diabetes, asthma, high blood pressure. During my sleep study I had enough leg movements that the doctor said that I had RLS and wanted to put me on Requip. I am overweight well over 100 pounds.
I knew that I was sick and tired of being exhausted. I made a commitment to myself to use my machine each and every night no matter what. Is it fun? No! Is it a hassle? Yes!! I feel better controlling the apnea so use my machine each and every night.
As far as the doctor prescribing you Provigil I would have to agree with the doctor if you are unwilling to use your machine why should she prescribe a powerful drug (that is expensive as well). I know this seems hard hearted, but it is up to you to help yourself.
I recently broke my nose, and it hasn't been a piece of cake, but believe me I have used my machine every night despite the pain and swelling.
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2:22 am...i'm off to my dungeon to try to get some sleep. sorry i'm such a wimp.
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