Six months of APAP, two masks, several changes of medication, and now I am finally at that stage I have only heard about. The one where you have energy to do things.
In the last five days, I have unpacked several boxes of stuff, cleaned out a hutch, rearranged everything, dusted and made room for new stuff. Gone out and bought plants and planted them, voluntarily cleaned out the closet in our bedroom, cleaned out the storage shed (my side only, I'm not crazy), painted a little display shelf rack for work, cleaned off the porch and put everything in the storage shed where there was now room since cleaning it out, and am contemplating cleaning out the linen closet where you can't even find the linen, naval jellying a dog pen and re-chroming it and going out and clipping the nails on all the dogs!
I have never voluntarily cleaned a closet in my entire life. Makes me wonder exactly how long I have had Apnea, now. Normally, things just accumulate, and get left for "later" or that massive house cleaning you have when you are expecting overnight company.
this burst of energy started right after starting on Xyrem for stage 3/4 sleep (oh, DCTom all those horrible possibilities you mention for this drug are only in cases of abuse). I'm at 4.5 ml twice a night and sleeping pretty much through without having that horribly drugged feeling.
Energy- By Golly, I think I finally have it!
15 posts
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judysunlakes
- Posts: 13
- Joined: Thu Jun 16, 2005 2:43 pm
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Janelle
DME, you can also tell your patients that it was about 3 months on 100% compliance since day 1 before I even felt "better". But it was a very gradual "Better" over that time. I felt more rested, but still needed naps. I looked better, no more dark circles under the eyes within a week. But the first 3 months I also gained 15 pounds, eating exactly the same as I had before. I had been on South Beach a year at that point and was still continuing the same basic diet.
It was only recently that I discovered I was not getting Stage 3/4 sleep, even after being on two other medications which were supposed to provide it. I still got drowsy in the afternoon or after lunch, I still got drowsy driving more than an hour and not even some of the drugs for that worked consistently.
I had a lot of setbacks, but I was lucky to have a Dr. who was the type who truly wanted to help for a complete turnaround, not just 80%, and who also believes that patients should receive copies of all reports they get, not one who thinks only medical staff should see them. In turn I print out 96 hour reports and take them in when I go. They put them right there in my folder and go over them while I am there. They don't chastise me for having the software and being able to do that.
Now that it seems I am finally turned around on the loss of deep sleep, maybe that weight will come off and continue to come off and I will see the full benefits of this therapy.
By the way, I only had an AHI of about 3.3 on my first sleep study, but I had O2 levels of 83% and was diagnosed as having severe upper respiratory resistance syndrome.
It was only recently that I discovered I was not getting Stage 3/4 sleep, even after being on two other medications which were supposed to provide it. I still got drowsy in the afternoon or after lunch, I still got drowsy driving more than an hour and not even some of the drugs for that worked consistently.
I had a lot of setbacks, but I was lucky to have a Dr. who was the type who truly wanted to help for a complete turnaround, not just 80%, and who also believes that patients should receive copies of all reports they get, not one who thinks only medical staff should see them. In turn I print out 96 hour reports and take them in when I go. They put them right there in my folder and go over them while I am there. They don't chastise me for having the software and being able to do that.
Now that it seems I am finally turned around on the loss of deep sleep, maybe that weight will come off and continue to come off and I will see the full benefits of this therapy.
By the way, I only had an AHI of about 3.3 on my first sleep study, but I had O2 levels of 83% and was diagnosed as having severe upper respiratory resistance syndrome.
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IWannaSleep
- Posts: 245
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- Location: Florida
- Contact:
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ahujudybear
- Posts: 354
- Joined: Mon May 23, 2005 10:12 am
- Location: Franklin, WI
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Janelle
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Sleepless on LI
- Posts: 3997
- Joined: Mon May 30, 2005 6:46 pm
- Location: Long Island, New York
Congratulations, Janelle! I am so happy to hear of your new found energy. I don't think it matters how long it takes to get to this point as long as you get there. Aren't you glad you didn't give up? You are the poster child for sticking to it. Many others would have folded by now, but you didn't and you are being rewarded for it. Good for you. I am so happy for you, sincerely!!! Like they say, good things come to those who wait. Aren't you glad you didn't give up???
L o R i
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Janelle
I didn't give up because of all the benefits I HAD received with xPAP therapy. Not having to get up to go to the bathroom all during the night or on car trips (on a two day trip to Colorado I went about once for my husbands three times). My blood pressure dropped 20 points even though I was not clinically high. I'm getting new blood work done in the next week or so and expect it to show improvement too, although I had hereditary good cholesterol and haven't had trigylceride problems. We are also checking cortisol at my request. I can generally get through the day without a nap. there are more but I can't think of them right now.
Point is this energy was almost overnight after starting the Xyrem and getting that deep sleep. Just the few weeks before, I worked 7 straight days, came home from work abut 2:30 and went to bed with muscle relaxants and usually slept for 2 hours, on top of that. I had a lot of pain but increased my Duragesic patch dosage twice now in the last week and that has helped. Even with the naps I was going to bed at 7 some night because I was so tired. I'm sure the pain contributed to this.
Point is this energy was almost overnight after starting the Xyrem and getting that deep sleep. Just the few weeks before, I worked 7 straight days, came home from work abut 2:30 and went to bed with muscle relaxants and usually slept for 2 hours, on top of that. I had a lot of pain but increased my Duragesic patch dosage twice now in the last week and that has helped. Even with the naps I was going to bed at 7 some night because I was so tired. I'm sure the pain contributed to this.
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SteveM
Xyrem Prescription
Janelle,
I'm new around here, so I don't know the whole back story.
Do you have narcolepsy in addition to Sleep Apnea? I have been using CPAP for three years and it helps me sleep through the night without flailing and kicking and Night Terrors. But my EDS is worse than ever.
Provigal had no effect on me. I'm now taking Adderall XR -- 40 mgs, 3 times a day. In the morning the XR doesn't really do anything for about three hours. So I'm going to have to try something else to "kick start" me in the morning. By 3 or 4p there's enough in me to start feeling almost normal, but it adds up to 120mg of amphetamine per day! This can't be good for you! And it's obviously only addressing the symptoms, not the cause.
Who prescribed Xyrem for you? My sleep doctor seems to think you have to have narcolepsy WITH cataplexy to get or even benefit from Xyrem. I've read about some pretty nasty reactions and side-effects, but then I hear from people like you who say it's given them their life back.
I would gladly take the risk of a few rough nights if I could wake up now and then and feel like I got 8 hours of sleep instead of 2.
I'm new around here, so I don't know the whole back story.
Do you have narcolepsy in addition to Sleep Apnea? I have been using CPAP for three years and it helps me sleep through the night without flailing and kicking and Night Terrors. But my EDS is worse than ever.
Provigal had no effect on me. I'm now taking Adderall XR -- 40 mgs, 3 times a day. In the morning the XR doesn't really do anything for about three hours. So I'm going to have to try something else to "kick start" me in the morning. By 3 or 4p there's enough in me to start feeling almost normal, but it adds up to 120mg of amphetamine per day! This can't be good for you! And it's obviously only addressing the symptoms, not the cause.
Who prescribed Xyrem for you? My sleep doctor seems to think you have to have narcolepsy WITH cataplexy to get or even benefit from Xyrem. I've read about some pretty nasty reactions and side-effects, but then I hear from people like you who say it's given them their life back.
I would gladly take the risk of a few rough nights if I could wake up now and then and feel like I got 8 hours of sleep instead of 2.
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Janelle
Many drugs have what is called "off-label" usage. While Xyrem was developed for treating Narcolepsy it is used off-label for treating lack of Stage 3/4 Sleep, and daytime drowsiness. I sleep like a log most nights, but occasionally have a lot of pain and don't until I can get the pain under control.
It appears I don't have narcolepsy, but I was tested since I did "black out" and then "woke up", and narrowly avoided a head-on collision with an oncoming car. I was not drowsy. But I had had several incidences of drowsy driving, so this scared me enough to hie myself off to my GP.
The Xyrem was prescribed by my Sleep Doctor.
The EEG I had to test for Narcolepsy recently showed an "irritation on my brain, which might be causing seizures or could cause seizures". Seizures of what I don't know. They now want me to have an MRI done of my brain.
I did have the Sleep Latency Test as part of my initial sleep study and did not have any REM sleep during any of them. This "rules out narcolepsy" since you will have REM within the first 5 minutes of sleep.
It appears I don't have narcolepsy, but I was tested since I did "black out" and then "woke up", and narrowly avoided a head-on collision with an oncoming car. I was not drowsy. But I had had several incidences of drowsy driving, so this scared me enough to hie myself off to my GP.
The Xyrem was prescribed by my Sleep Doctor.
The EEG I had to test for Narcolepsy recently showed an "irritation on my brain, which might be causing seizures or could cause seizures". Seizures of what I don't know. They now want me to have an MRI done of my brain.
I did have the Sleep Latency Test as part of my initial sleep study and did not have any REM sleep during any of them. This "rules out narcolepsy" since you will have REM within the first 5 minutes of sleep.
Good for your Jannelle. though I don't take a prescription for alertness, I have found I am much more alert while driving now and mostly during the day. I am now riding my bike a few times a week in early and I mean early hours of the morning and will be joining the gym nearby to work out before work.
I have almost reached the 8 month mark with relatively good compliance. ( Leaks are always an issue but I won't take the mask off.
Everyone here should be encouraged by your success!!!
I have almost reached the 8 month mark with relatively good compliance. ( Leaks are always an issue but I won't take the mask off.
Everyone here should be encouraged by your success!!!
Janelle,
Your story is just amazing. Thanks for sharing your experiences and being an inspiration to so many. I am not familiar with Xyrem but googled it, and it does look as if it has scary side effects. Sometimes you have to make these decisions based on quality of life.
Speaking of quality of life decisions, my hubby finally made the decision a number of months ago to try Enbrel for his psoriatic arthritis. I hate reading about the possible side effects and hate that he has to inject this stuff twice a week. But I asked him the other day how he would rate how it's working - on a scale of 1 to 10, 1 being crummy, he rated his relief from pain and stiffness an 8. By the way, his rheumatologist is the doc who suggested a sleep study. He finds a huge percentage of his arthritis patients have sleep disorders - a major connection there, in his opinion. He sent us to a great sleep doc. So I got tested, too, just for grins as I was always tired, and found I had severe OSA as well (no arthritis). Who knew. Now we've both been on CPAP for about 6 mo. Fully compliant.
Way to go, Janelle! Now that you are feeling so well and getting so much stuff done, don't forget to stop and smell the roses!
lynn
Your story is just amazing. Thanks for sharing your experiences and being an inspiration to so many. I am not familiar with Xyrem but googled it, and it does look as if it has scary side effects. Sometimes you have to make these decisions based on quality of life.
Speaking of quality of life decisions, my hubby finally made the decision a number of months ago to try Enbrel for his psoriatic arthritis. I hate reading about the possible side effects and hate that he has to inject this stuff twice a week. But I asked him the other day how he would rate how it's working - on a scale of 1 to 10, 1 being crummy, he rated his relief from pain and stiffness an 8. By the way, his rheumatologist is the doc who suggested a sleep study. He finds a huge percentage of his arthritis patients have sleep disorders - a major connection there, in his opinion. He sent us to a great sleep doc. So I got tested, too, just for grins as I was always tired, and found I had severe OSA as well (no arthritis). Who knew. Now we've both been on CPAP for about 6 mo. Fully compliant.
Way to go, Janelle! Now that you are feeling so well and getting so much stuff done, don't forget to stop and smell the roses!
lynn
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| Additional Comments: i love resmed stuff! | ||||
Ok, guys, ya'll are scaring me, lol, I am new to this I just had my first sleep study done 2 days ago, and I did not know anything about this It was my understanding that you sleep with this mask and you instantly feel better the next morning, obviously I am very very wrong!! Is it really this difficult to get everything under control???
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Sleepless on LI
- Posts: 3997
- Joined: Mon May 30, 2005 6:46 pm
- Location: Long Island, New York
LR,
I only pray for you that that happens. Some people actually do get instant relief, but I don't believe that is the norm. For me, it was one day into my second week where I woke up and, voila, I felt this new found energy and alertness that I hadn't felt in years. Everyone reacts differently to therapy, masks, and the amount of time it takes to get that relief. There are so many variable factors, one important one being how compliant you are with wearing your mask all night, etc.
Like I always say to newcomers, the most important thing is not to expect miracles and instant relief. If you are one of the lucky ones who happens to get it, then you will be pleasantly surprised. But if you don't, you won't be disappointed. It is important, though, to keep the positive attitude that this is a lifesaver and it will work if you stick with it. If you hit a bump, maybe a mask that doesn't fit well or leaks, or any of the other things that can stop you from getting that instant relief, don't let it get you down. Keep your chin up and keep plugging away at it. It works!!! Trust me, it works. I've been on therapy now since the beginning of June and I am literally a new person. More energy than I can remember, I exercise, eat right, am losing weight, my BP has gone down to where I don't need meds. anymore...it is truly a lifesaver.
You will get used to it, whether it's today, tomorrow or next month. Just DO NOT GIVE UP when the going gets tough. We are all here to support you. Just ask questions or even post a thread to vent. That is what this site is all about.
Best of luck to you. Keep us all posted on your progress.
I only pray for you that that happens. Some people actually do get instant relief, but I don't believe that is the norm. For me, it was one day into my second week where I woke up and, voila, I felt this new found energy and alertness that I hadn't felt in years. Everyone reacts differently to therapy, masks, and the amount of time it takes to get that relief. There are so many variable factors, one important one being how compliant you are with wearing your mask all night, etc.
Like I always say to newcomers, the most important thing is not to expect miracles and instant relief. If you are one of the lucky ones who happens to get it, then you will be pleasantly surprised. But if you don't, you won't be disappointed. It is important, though, to keep the positive attitude that this is a lifesaver and it will work if you stick with it. If you hit a bump, maybe a mask that doesn't fit well or leaks, or any of the other things that can stop you from getting that instant relief, don't let it get you down. Keep your chin up and keep plugging away at it. It works!!! Trust me, it works. I've been on therapy now since the beginning of June and I am literally a new person. More energy than I can remember, I exercise, eat right, am losing weight, my BP has gone down to where I don't need meds. anymore...it is truly a lifesaver.
You will get used to it, whether it's today, tomorrow or next month. Just DO NOT GIVE UP when the going gets tough. We are all here to support you. Just ask questions or even post a thread to vent. That is what this site is all about.
Best of luck to you. Keep us all posted on your progress.
L o R i
15 posts
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