nozeez
07-19-2008, 10:59 PM
I was recently diagnosed with OSA through a sleep study. I have gotten terrible sleep as long as I remember. I wake up so many times a night. Most of the time I can fall back asleep easily, but there are times when I will lie there for hours hoping to fall asleep. My study showed 50 "arousals" per hour. I had barely any stage 3 or 4 sleep. My sleep efficiency was less than 60%. My apna wasn't terrible, but my breathing was the cause for 25% of my "arousals". Even with the CPAP, I had 50 arousals, and 9% were caused by breathing issues. I have been using the CPAP every night for about 10 days. I think I can tell somewhat of a difference, but it wasn't the "miracle cure" I was hoping for. I had visions of waking up rested and ready to go with a lot of energy. I am wondering if any of you have had a more gradual change in how you felt? It seems I have always been tired and slept poorly, and it just finally got to a point where I felt I had to do SOMETHING! Also, any of you have similar sleep issues and what have you found to help? I have to wonder if my body is just so used to waking up so often it may take a while or some medication to snap out of it??
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bethsheba
07-20-2008, 10:58 AM
Nozeez,
First off, although I experienced immediate improvement with my cpap, it was months, if not years after using cpap before I found the primary cause of my sleep problems despite seeing a primary and a sleep doctor every 6 months or so...here's what I would recommend....
First off, the settings on your cpap may or may not be set correctly. Get back with your doctor/respiratory therapist/sleep technician and tell them what you are telling us. It has taken most of us some adjusting/tweaking before we get things "right". I slept with my mask on upside down the first night, and later went through 3 different style masks before I could find one that felt comtfortable without leaking. And some people get a cpap only to find that given the strength of the pressures, they should have been prescribed a bipap instead. So start communicating with your cpap people to make sure you're using the equipment (including humidifier) correctly, and it fits you well and comfortably.
When you call your sleep specialist to report your sleep experience with cpap, ask for (demand) a copy of your sleep study as it has more data there then your doctor(s) have shared with you. If your doctors indeed told you everything on the report, there was too much info there for you to take it all in. It is helpful to have it in writing so you know everything that is going on...I have referred to my report off and on throughout the last couple of years as I have learned of other treatments, etc.
Are you taking any meds for anything else? Although I was diagnosed with obstructive sleep apnea and periodic limb movement syndrome, my severe sleep problems (and perhaps my limb movements) were caused by blood pressure medication....doctors denied there was any correlation but the literature and my experience has proven otherwise. If you are taking meds, do an extensive search for side effects keeping in mind that no one source (doctors/pharmacist/web sites/friends) will list all of the side effects. You'll need to check a number of sources to see if the meds list sleep problems (insomnia, somnolescence, and similar terminolgy).
And, yes, it's possible that your body is used to waking up many times and is doing so out of habit...but I suspect it is something other than that. Many of us had our best sleep with cpap on the first nights we used it simply because we were so sleep deprived.
Do let us know what you find out so we all can learn from your experience.
Bethsheba
First off, although I experienced immediate improvement with my cpap, it was months, if not years after using cpap before I found the primary cause of my sleep problems despite seeing a primary and a sleep doctor every 6 months or so...here's what I would recommend....
First off, the settings on your cpap may or may not be set correctly. Get back with your doctor/respiratory therapist/sleep technician and tell them what you are telling us. It has taken most of us some adjusting/tweaking before we get things "right". I slept with my mask on upside down the first night, and later went through 3 different style masks before I could find one that felt comtfortable without leaking. And some people get a cpap only to find that given the strength of the pressures, they should have been prescribed a bipap instead. So start communicating with your cpap people to make sure you're using the equipment (including humidifier) correctly, and it fits you well and comfortably.
When you call your sleep specialist to report your sleep experience with cpap, ask for (demand) a copy of your sleep study as it has more data there then your doctor(s) have shared with you. If your doctors indeed told you everything on the report, there was too much info there for you to take it all in. It is helpful to have it in writing so you know everything that is going on...I have referred to my report off and on throughout the last couple of years as I have learned of other treatments, etc.
Are you taking any meds for anything else? Although I was diagnosed with obstructive sleep apnea and periodic limb movement syndrome, my severe sleep problems (and perhaps my limb movements) were caused by blood pressure medication....doctors denied there was any correlation but the literature and my experience has proven otherwise. If you are taking meds, do an extensive search for side effects keeping in mind that no one source (doctors/pharmacist/web sites/friends) will list all of the side effects. You'll need to check a number of sources to see if the meds list sleep problems (insomnia, somnolescence, and similar terminolgy).
And, yes, it's possible that your body is used to waking up many times and is doing so out of habit...but I suspect it is something other than that. Many of us had our best sleep with cpap on the first nights we used it simply because we were so sleep deprived.
Do let us know what you find out so we all can learn from your experience.
Bethsheba
nozeez
07-20-2008, 03:48 PM
Thanks for the reply Bethsheba. I have a followup next month, and am going to be much more informed and have many questions. I can't get over the fact that WITH CPAP, I still had the 50 arousals/hour, 9% of which were caused by breathing?? I would have thought that it should have been better, and maybe it was once they adjusted the pressure?? That is something I can ask and also most likely find out if I get the whole report. I am to bring my CPAP in with me and there is a card that they read that gives them data. I thought it would also indicate any leaking/breathing abnormalities??
I do take Sarafem, and am going to consult my PCP about dc'ing to see if that will help my sleep. I have had sleep problems way before I started taking, that though. Also, I have been diagnosed with RLS (which Sarafem can also aggrivate), and I was supposed to start taking medication for that. Well, I just kept increasing and increasing with no help for the RLS, but did have some strange side effects that I wasn't willing to deal with, so I have stopped that as well and am waiting to hear back from the sleep dr. I also was having 2 sodas/morning with caffeine, and have gone down to one. I am going to stop caffeine too and see if there is any correlation--although, I don't think I consume enough for it to affect my sleep, but I am willing to try anything. Any questions anyone can think of for me to ask the sleep dr. would be greatly appreciated! I was so exhausted from no sleep at the study, when I met with her that same morning, I just kind of sat there.
I do take Sarafem, and am going to consult my PCP about dc'ing to see if that will help my sleep. I have had sleep problems way before I started taking, that though. Also, I have been diagnosed with RLS (which Sarafem can also aggrivate), and I was supposed to start taking medication for that. Well, I just kept increasing and increasing with no help for the RLS, but did have some strange side effects that I wasn't willing to deal with, so I have stopped that as well and am waiting to hear back from the sleep dr. I also was having 2 sodas/morning with caffeine, and have gone down to one. I am going to stop caffeine too and see if there is any correlation--although, I don't think I consume enough for it to affect my sleep, but I am willing to try anything. Any questions anyone can think of for me to ask the sleep dr. would be greatly appreciated! I was so exhausted from no sleep at the study, when I met with her that same morning, I just kind of sat there.
bethsheba
07-20-2008, 07:19 PM
ooops. Sorry.
bethsheba
07-20-2008, 07:46 PM
Hi!
First off, if only 9 percent of your arousals were caused by breathing, my guess is that apnea is not your primary problem, at least right now. But you need to get a copy of your sleep study, which you and your insurance company paid for and are entitled to have, to see what else is going on. Sounds like 91 percent of your arousals are caused by something else and I would suspect it is your sarafem.
Did a quick peak at serafim side effects and found that sarafem may cause insomnia and other sleep problems like a decrease in REM sleep, a disruption of the sleep cycle, changes in rapid eye movement sleep, drowsiness, and other sleep disturbances.
I am to bring my CPAP in with me and there is a card that they read that gives them data. I thought it would also indicate any leaking/breathing abnormalities??
Good! Yes the smart card should reveal any leaking, snoring, abnormalities...they use the data from the smart card to determine if pressures need to be adjusted, also.
..I do take Sarafem, and am going to consult my PCP about dc'ing to see if that will help my sleep. I have had sleep problems way before I started taking, that though. Keep in mind that pcps and specialists are notorious for overlooking side effects or denying they exist!! Do your homework beforehand, and get documentation to support your suspicions. Again, my pcp and my sleep specialist denied my restless legs were due to my blood pressure medication but the info I found suggests it is a common problem. Better to try another med than to add a med to treat side effects.
... Well, I just kept increasing and increasing with no help for the RLS, but did have some strange side effects that I wasn't willing to deal with, so I have stopped that as well and am waiting to hear back from the sleep dr.
I don't know what you were taking for your rls, but I was taking Mirapex and it did nothing except make my rls worse. My sleep specialist said that when rls gets worse with Mirapex, it is because the dosage is too strong, and he had me cut back my dose, which helped as I stopped having movements in the afternoon and evening, but continued to have them at night. I found that two different meds caused my rls...hydrochlorothiazide (a water pill) and benicar/hct.
I tried the caffeine thing, too, but no effect. I indulge in my coffee and cafe lates freely now and have no problems whatsover.
....I was so exhausted from no sleep at the study, when I met with her that same morning, I just kind of sat there.
Brings back memories...i was so exhausted at my follow ups that I didn't have the energy to tell my sleep doctor that I was too tired to shower, to dress, to eat, to return phone calls, etc...and it amazed me that he would tell me my pressures and everything else were great and then send my on my way without asking how I was feeling. On a scale of 1-10, with 10 being exhausted, I was a 20. With that in mind, it may be helpful to tell your doctor how you feel on a scale of 1-10 or things may be overlooked.
Finally, although you may have had sleep problems before, they may have been aggravated by depression and therefore a poor diet and exercise lifestyle. Sometimes medications can aggravate these conditions...meds that cause sleep disturbances can indirectly cause depression which in turn can cause more sleep disturbances.
Oh dear, I'm probably not making any sense at all...but my point is, your apnea may be a problem (as was mine since I was a child) but it may be made worse by something else.
Bethsheba
First off, if only 9 percent of your arousals were caused by breathing, my guess is that apnea is not your primary problem, at least right now. But you need to get a copy of your sleep study, which you and your insurance company paid for and are entitled to have, to see what else is going on. Sounds like 91 percent of your arousals are caused by something else and I would suspect it is your sarafem.
Did a quick peak at serafim side effects and found that sarafem may cause insomnia and other sleep problems like a decrease in REM sleep, a disruption of the sleep cycle, changes in rapid eye movement sleep, drowsiness, and other sleep disturbances.
I am to bring my CPAP in with me and there is a card that they read that gives them data. I thought it would also indicate any leaking/breathing abnormalities??
Good! Yes the smart card should reveal any leaking, snoring, abnormalities...they use the data from the smart card to determine if pressures need to be adjusted, also.
..I do take Sarafem, and am going to consult my PCP about dc'ing to see if that will help my sleep. I have had sleep problems way before I started taking, that though. Keep in mind that pcps and specialists are notorious for overlooking side effects or denying they exist!! Do your homework beforehand, and get documentation to support your suspicions. Again, my pcp and my sleep specialist denied my restless legs were due to my blood pressure medication but the info I found suggests it is a common problem. Better to try another med than to add a med to treat side effects.
... Well, I just kept increasing and increasing with no help for the RLS, but did have some strange side effects that I wasn't willing to deal with, so I have stopped that as well and am waiting to hear back from the sleep dr.
I don't know what you were taking for your rls, but I was taking Mirapex and it did nothing except make my rls worse. My sleep specialist said that when rls gets worse with Mirapex, it is because the dosage is too strong, and he had me cut back my dose, which helped as I stopped having movements in the afternoon and evening, but continued to have them at night. I found that two different meds caused my rls...hydrochlorothiazide (a water pill) and benicar/hct.
I tried the caffeine thing, too, but no effect. I indulge in my coffee and cafe lates freely now and have no problems whatsover.
....I was so exhausted from no sleep at the study, when I met with her that same morning, I just kind of sat there.
Brings back memories...i was so exhausted at my follow ups that I didn't have the energy to tell my sleep doctor that I was too tired to shower, to dress, to eat, to return phone calls, etc...and it amazed me that he would tell me my pressures and everything else were great and then send my on my way without asking how I was feeling. On a scale of 1-10, with 10 being exhausted, I was a 20. With that in mind, it may be helpful to tell your doctor how you feel on a scale of 1-10 or things may be overlooked.
Finally, although you may have had sleep problems before, they may have been aggravated by depression and therefore a poor diet and exercise lifestyle. Sometimes medications can aggravate these conditions...meds that cause sleep disturbances can indirectly cause depression which in turn can cause more sleep disturbances.
Oh dear, I'm probably not making any sense at all...but my point is, your apnea may be a problem (as was mine since I was a child) but it may be made worse by something else.
Bethsheba
nozeez
07-20-2008, 10:56 PM
Thanks for the nice reply. I agree that there has to be some other cause. I don't deny I have sleep apnea (but don't feel it is that bad), but I don't feel that is the only problem with my sleep, or I should be feeling much better by now. I am trying the "no caffeine" just because I don't want anyone to say "THERE'S your problem". Know what I mean?? I also want to come off the Sarafem to see if that makes a difference, but want to consult my PCP first. OH, man, I hope I don't do anything crazy without it!!! I will also try--TRY to eat better as well as exercise more. There you go, it is in writing! :D
I know sleep/mood/diet/exercise is very closely intertwined and it can be a vicious cycle. I am trying to do everything I can to get a good balance. It can just be so tough when you are always tired. But, I hope I am angry enough with all of this to hopefully make some changes. We can all improve our behaviors, right?? :D
Yes, I too, was taking Mirapex and didn't see ANY relief at .5mg and the dr. told me to increase it to .625mg and it was like turning on a switch. A BAD switch. The side effects were MUCH worse than my RLS and I don't even think it helped that! So, to decrease the dosage wouldn't do any good either. I will not take Mirapex again. I think I can continue to handle my RLS (as I have had it as long as I can remember) if I could just get restful sleep! I thought that it may be the cause of my terrible sleep, but apparently not. I am mostly embarrassed by the jittery legs and worry about it bothering others more than anything. Also, my ferritin is slightly low, so I am also on iron supplements and have to have that rechecked in a few months. Who knows, maybe that will help the RLS. Sarafem is also known to bother RLS-there is another possible factor and reason to stop it. So, other than my husband and family, what do I have to lose by stopping it, right?? :confused:
Thanks again, I can't tell you how much it helps to be able to communicate with others who know what you are going through!!
I know sleep/mood/diet/exercise is very closely intertwined and it can be a vicious cycle. I am trying to do everything I can to get a good balance. It can just be so tough when you are always tired. But, I hope I am angry enough with all of this to hopefully make some changes. We can all improve our behaviors, right?? :D
Yes, I too, was taking Mirapex and didn't see ANY relief at .5mg and the dr. told me to increase it to .625mg and it was like turning on a switch. A BAD switch. The side effects were MUCH worse than my RLS and I don't even think it helped that! So, to decrease the dosage wouldn't do any good either. I will not take Mirapex again. I think I can continue to handle my RLS (as I have had it as long as I can remember) if I could just get restful sleep! I thought that it may be the cause of my terrible sleep, but apparently not. I am mostly embarrassed by the jittery legs and worry about it bothering others more than anything. Also, my ferritin is slightly low, so I am also on iron supplements and have to have that rechecked in a few months. Who knows, maybe that will help the RLS. Sarafem is also known to bother RLS-there is another possible factor and reason to stop it. So, other than my husband and family, what do I have to lose by stopping it, right?? :confused:
Thanks again, I can't tell you how much it helps to be able to communicate with others who know what you are going through!!
bethsheba
07-20-2008, 11:23 PM
Hello nozzez,
You're welcome for the reply. It took me over 40 years to figure out the sleep apnea thing, but the med thing was worse and that took me 3 years to figure out. If I can help someone shorten the "diagnosis" time, I will feel better about the years I wasted sleeping too much.
... I am trying the "no caffeine" just because I don't want anyone to say "THERE'S your problem". Know what I mean??... Yup!
... I also want to come off the Sarafem to see if that makes a difference, but want to consult my PCP first. Yes, it's a good idea to consult your pcp first...but also check with your pharmacist as pcp's don't always know about withdrawal problems...and do some reading on sarafem withdrawal. I have no experience with that med, but many of us on the blood pressure board have been told it's ok to disco a med without weaning, and then later have found about life threatening side effects of going cold turkey.
... I will also try--TRY to eat better as well as exercise more. There you go, it is in writing! :D
You may be expecting too much of yourself given your fatigue. Best figure out the cause of the fatigue first. I only mention the diet/exercise/sleep thing to explain why you may have had problems before the serafam.
...I know sleep/mood/diet/exercise is very closely intertwined and it can be a vicious cycle. I am trying to do everything I can to get a good balance. It can just be so tough when you are always tired. But, I hope I am angry enough with all of this to hopefully make some changes. We can all improve our behaviors, right?? :D
Yes, we can all improve our behaviors but I think you are being too hard on yourself. I doubt your problems were caused by your behaviors...doctors blame too much on stress, anxiety, and depression. I believe these are secondary conditions, meaning that something biochemical is causing these symptoms.
... I will not take Mirapex again.
Me neither, although the only side effect I recall is my rls starting in the afternoon instead of after I fell asleep.
... I am mostly embarrassed by the jittery legs and worry about it bothering others more than anything. Also, my ferritin is slightly low, so I am also on iron supplements and have to have that rechecked in a few months. Who knows, maybe that will help the RLS...
My sleep specialist told me that iron levels can aggravate/cause rls and so can sleep apnea....both of these conditions are related to low oxygen levels so oxygen may be the key. I tried the iron, too, but it didn't help...neither did my cpap. I did notice that my rls "disappeared" after I stopped taking the meds....but I have also read that some meds can deplete calcium, potassium, and magnesium, and if these nutrients are brought back into balance (the ratio is important here), leg improvements may decrease. Many of us have benefited by balancing our diets or in other words, eating more fruits and vegetables.
Thanks again, I can't tell you how much it helps to be able to communicate with others who know what you are going through!!
Thank you for writing. It is comforting to me to know that someone else can understand what i went through....unless you've experienced it firsthand, it's difficult for others to understand how much these things affect our lives, our families.
Take care. Keep us posted, :angel:.
Bethsheba
You're welcome for the reply. It took me over 40 years to figure out the sleep apnea thing, but the med thing was worse and that took me 3 years to figure out. If I can help someone shorten the "diagnosis" time, I will feel better about the years I wasted sleeping too much.
... I am trying the "no caffeine" just because I don't want anyone to say "THERE'S your problem". Know what I mean??... Yup!
... I also want to come off the Sarafem to see if that makes a difference, but want to consult my PCP first. Yes, it's a good idea to consult your pcp first...but also check with your pharmacist as pcp's don't always know about withdrawal problems...and do some reading on sarafem withdrawal. I have no experience with that med, but many of us on the blood pressure board have been told it's ok to disco a med without weaning, and then later have found about life threatening side effects of going cold turkey.
... I will also try--TRY to eat better as well as exercise more. There you go, it is in writing! :D
You may be expecting too much of yourself given your fatigue. Best figure out the cause of the fatigue first. I only mention the diet/exercise/sleep thing to explain why you may have had problems before the serafam.
...I know sleep/mood/diet/exercise is very closely intertwined and it can be a vicious cycle. I am trying to do everything I can to get a good balance. It can just be so tough when you are always tired. But, I hope I am angry enough with all of this to hopefully make some changes. We can all improve our behaviors, right?? :D
Yes, we can all improve our behaviors but I think you are being too hard on yourself. I doubt your problems were caused by your behaviors...doctors blame too much on stress, anxiety, and depression. I believe these are secondary conditions, meaning that something biochemical is causing these symptoms.
... I will not take Mirapex again.
Me neither, although the only side effect I recall is my rls starting in the afternoon instead of after I fell asleep.
... I am mostly embarrassed by the jittery legs and worry about it bothering others more than anything. Also, my ferritin is slightly low, so I am also on iron supplements and have to have that rechecked in a few months. Who knows, maybe that will help the RLS...
My sleep specialist told me that iron levels can aggravate/cause rls and so can sleep apnea....both of these conditions are related to low oxygen levels so oxygen may be the key. I tried the iron, too, but it didn't help...neither did my cpap. I did notice that my rls "disappeared" after I stopped taking the meds....but I have also read that some meds can deplete calcium, potassium, and magnesium, and if these nutrients are brought back into balance (the ratio is important here), leg improvements may decrease. Many of us have benefited by balancing our diets or in other words, eating more fruits and vegetables.
Thanks again, I can't tell you how much it helps to be able to communicate with others who know what you are going through!!
Thank you for writing. It is comforting to me to know that someone else can understand what i went through....unless you've experienced it firsthand, it's difficult for others to understand how much these things affect our lives, our families.
Take care. Keep us posted, :angel:.
Bethsheba