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Hi, all, first post.  Glad I found this forum.

Here's my history in brief:  Up until about a year and a half ago, my sleep apnea was a significant but not destabilizing issue.  I had a sleep study done a bit more than 2 years ago, with a reported AHI of 15.9.  After an initial period of experimentation with CPAP and an oral appliance, I decided that fixing my severe deviated septum would probably help me no matter which direction I ended up going in the future.

The surgery went well, but 3 weeks afterwards, I started having trouble breathing.  I had a number of tests (lung, heart, etc.), but they all came back fine.  My sleep got really, really bad, and my life started falling apart.  I was a walking zombie. 

I tried CPAP, the oral appliance, and CPAP with the oral appliance.  Nothing doing.  In 6 months, I never managed more than 2 hours of sleep with the CPAP.  I had a repeat sleep study, and now my AHI was 31.7.  I was in danger of losing my job and my family.  I had jaw surgery, and now my airway is huge (I am not overweight and don't have any fat in my throat).  But I still have about the same AHI.  After the surgery, I can now sleep 5-6 hours with CPAP, but I'm still waking up more than I'd like to go to the bathroom.

I'm a pretty industrious person, and I believe I've done everything I can to make CPAP work.  I've chased down mask leaks, taped and used a chin strap, and tried many different pressures.  Nothing works consistently.

As I was trying to chase down every possible cause of my problems, I went to see an ENT to see if I could have sinus problems.  I feel congested and fatigued, but I don't have what would be considered typical sinus issues.  She was skeptical but decided to do a CT scan just in case.  Lo and behold, I have a sinus infection.  I was on augmentin for 3 weeks and felt I had my life back.  It was the first time I'd been happy since these problems started.  Then I went off the antibiotics and my symptoms returned.  This repeated itself with another antibiotic.  I recently had another CT scan, and the sinus infection was still there.  I'm currently on my third round of antibiotics, together with Prednisone.

What I'm asking myself is: how much of my problems are due to sleep apnea, and how much to the sinus infection (which I might have picked up in the hospital)?  And is it normal to need such a long course of antibiotics?

Any thoughts would be most appreciated.

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Hi, Kath,

Trazodone is officially an antidepressant, that's true.  But the dose necessary for antidepressant effects is something like 350mg.  It's often prescribed off label as a sleeping aid.  I did notice that at 50mg, it had too much of a sedating effect, so when I used it, I used 25mg.  That helps a bit with sleep and doesn't depress my central nervous system too much.

All in all, though, I try to avoid sleep aids, and wouldn't want to use Trazodone in high doses or on a regular basis.


Kath Hope www.hope2Sleep.co.uk said:


Thomas, the Trazodone is an anti-depressant like Terry's on, and these are known to attribute to apneas.  Having said that, you will need to talk to your doc about your need for them, as sometimes the benefits outweigh the negatives.



Thanks for the extra info Thomas :)

Thomas Edison said:

Hi, Kath,

Trazodone is officially an antidepressant, that's true.  But the dose necessary for antidepressant effects is something like 350mg.  It's often prescribed off label as a sleeping aid.  I did notice that at 50mg, it had too much of a sedating effect, so when I used it, I used 25mg.  That helps a bit with sleep and doesn't depress my central nervous system too much.

All in all, though, I try to avoid sleep aids, and wouldn't want to use Trazodone in high doses or on a regular basis.


Kath Hope www.hope2Sleep.co.uk said:


Thomas, the Trazodone is an anti-depressant like Terry's on, and these are known to attribute to apneas.  Having said that, you will need to talk to your doc about your need for them, as sometimes the benefits outweigh the negatives.



IMHO Trazadone is the worst sleep aid on the market. Technically it is not a sleep aid, or was that ever it's purpose. In drugs like this sleep is a side effect. In addition to the info provided by Kath your body will build up a tolerance to these types of drugs very fast when not used for their original purpose. You start out small and before you know it your taking 600-1000mg just to sleep. I see it more often than not.

 

talk to your doc. if your going to take a sleep aid Ambien or lunesta is a much better choice. However they should not be taken for more than 30-60 days at a time. During this time your sleep should correct itself. If not then you need to search out another source for your problem.

Hi, RockRpsgt,

Thanks for your input.  To be honest, I haven't had any success with any sleep aid.  When I use Ambien or Lunesta, I cannot sleep through the night.  I sleep very well for 4-5 hours, then I wake up wide awake.  This is true for AmbienCR as well.  Whenever I start using them, after a few days, I vow that I never will again.  The same holds for Trazodone at 50mg, so when I use it, I have to stick to 25mg.

I usually don't use sleep aids.  But I'm a very sensitive sleeper, and my CPAP definitely disturbs my sleep greatly, even though it also helps.  Once in a while, I break down and use something to help me deal with these disturbances.


RockRpsgt said:

IMHO Trazadone is the worst sleep aid on the market. Technically it is not a sleep aid, or was that ever it's purpose. In drugs like this sleep is a side effect. In addition to the info provided by Kath your body will build up a tolerance to these types of drugs very fast when not used for their original purpose. You start out small and before you know it your taking 600-1000mg just to sleep. I see it more often than not.

 

talk to your doc. if your going to take a sleep aid Ambien or lunesta is a much better choice. However they should not be taken for more than 30-60 days at a time. During this time your sleep should correct itself. If not then you need to search out another source for your problem.

Thomas and Rock,

Would just love to share my sleep experiences with those drugs named. It sounds like Thomas is a lot like me, extremely sensitive to dosing with most meds. I have found just the opposite of what Rock said. 

I found Ambien even up towards 15mg a night did not help with sleep at all. And I tried it for about 3 months. And from what I've read, some people can build a tolerance to Ambien as well. The Ambien was in addition to Trazadone 25mg since the trazadone did not work by itself at that time. ANd the CR did not work, nor did Sonata for waking up in the middle of the night.

I have gotten myself off the Ambien by dosing downwards over several weeks while at the same time dosing the Trazadone up to 50mgs. Couldn't see taking something that really did not work. Been off the Ambien now for about 3 months.  And since that time I have also been able to cut back on the Trazadone down to 12.5 mgs. For the first time in over 40 years I can actually sleep and when I wake up I can go back to sleep. To be honest I also take several supplements, but always have. They don't work by themselves either.

I find no tolerance troubles with the Trazadone since I've been able to actually cut it back and stay at the 12.5mgs. Only trouble is when I tried cutting that out, I did not sleep too well. So not sure if I can ever get off it. But I only tried once, not sure if it was just a bad night. I just didn't want to try again just yet since I find sleeping so good. And I really don't want to try replacing it with something else either. Have tried just about everything out there with not much help.

I just wish other than Xyrem there was something available that helped one sleep deeply and did not cost $3000/month. Xyrem was the only med I used that made me sleep deeply, wake refreshed and had absolutely no side effects. I just can't afford it now since my insurance will no longer cover it.

As much as I actually sleep now (after having life long insomnia for 44 years I try not to complain), I don't sleep deeply and am still so tired/fatigued/sleepy during the day. I know I could take meds that help you feel awake, but not sure I want to go that route with my history of side effects with most medications (and not just sleep meds).



Thomas Edison said:

Hi, RockRpsgt,

Thanks for your input.  To be honest, I haven't had any success with any sleep aid.  When I use Ambien or Lunesta, I cannot sleep through the night.  I sleep very well for 4-5 hours, then I wake up wide awake.  This is true for AmbienCR as well.  Whenever I start using them, after a few days, I vow that I never will again.  The same holds for Trazodone at 50mg, so when I use it, I have to stick to 25mg.

I usually don't use sleep aids.  But I'm a very sensitive sleeper, and my CPAP definitely disturbs my sleep greatly, even though it also helps.  Once in a while, I break down and use something to help me deal with these disturbances.


RockRpsgt said:

IMHO Trazadone is the worst sleep aid on the market. Technically it is not a sleep aid, or was that ever it's purpose. In drugs like this sleep is a side effect. In addition to the info provided by Kath your body will build up a tolerance to these types of drugs very fast when not used for their original purpose. You start out small and before you know it your taking 600-1000mg just to sleep. I see it more often than not.

 

talk to your doc. if your going to take a sleep aid Ambien or lunesta is a much better choice. However they should not be taken for more than 30-60 days at a time. During this time your sleep should correct itself. If not then you need to search out another source for your problem.

I'm sorry to hear that you've had such a hard time of things, Mary.  44 years of insomnia sounds tough.

Regarding sleep aids, I've heard that rotating them every day or every few days makes it easier to avoid developing tolerances.  With regard specifically to Ambien and its ilk, it seems that very little is really known about how exactly it affects the body.  In general, sleep is a very complicated thing, and I imagine that 200 years from now, people will look back at our current techniques the way we look at blood letting and leeches.  Still, we have to work with what's available to us.

FWIW, I've used Nuvigil briefly.  The first day was great, but I quickly stopped feeling well and vowed not to take it on a regular basis.  I still have some for occasional use, but I don't think I would want to use it more than a couple of times per month.  You're probably wise to avoid such things, given that you say you're sensitive to all medicines.  The funny thing for me is that I'm not particularly sensitive at all outside of sleep medicine and Nuvigil.  Right now, I'm on antibiotics and prednisone, and I can't say it's had much of an effect at all.

Just out of curiosity, what other supplements do you take?

Mary Callahan said:

Thomas and Rock,

Would just love to share my sleep experiences with those drugs named. It sounds like Thomas is a lot like me, extremely sensitive to dosing with most meds. I have found just the opposite of what Rock said. 

I found Ambien even up towards 15mg a night did not help with sleep at all. And I tried it for about 3 months. And from what I've read, some people can build a tolerance to Ambien as well. The Ambien was in addition to Trazadone 25mg since the trazadone did not work by itself at that time. ANd the CR did not work, nor did Sonata for waking up in the middle of the night.

I have gotten myself off the Ambien by dosing downwards over several weeks while at the same time dosing the Trazadone up to 50mgs. Couldn't see taking something that really did not work. Been off the Ambien now for about 3 months.  And since that time I have also been able to cut back on the Trazadone down to 12.5 mgs. For the first time in over 40 years I can actually sleep and when I wake up I can go back to sleep. To be honest I also take several supplements, but always have. They don't work by themselves either.

I find no tolerance troubles with the Trazadone since I've been able to actually cut it back and stay at the 12.5mgs. Only trouble is when I tried cutting that out, I did not sleep too well. So not sure if I can ever get off it. But I only tried once, not sure if it was just a bad night. I just didn't want to try again just yet since I find sleeping so good. And I really don't want to try replacing it with something else either. Have tried just about everything out there with not much help.

I just wish other than Xyrem there was something available that helped one sleep deeply and did not cost $3000/month. Xyrem was the only med I used that made me sleep deeply, wake refreshed and had absolutely no side effects. I just can't afford it now since my insurance will no longer cover it.

As much as I actually sleep now (after having life long insomnia for 44 years I try not to complain), I don't sleep deeply and am still so tired/fatigued/sleepy during the day. I know I could take meds that help you feel awake, but not sure I want to go that route with my history of side effects with most medications (and not just sleep meds).

Thomas, you are so right, it has been tough. Didn't even know how bad I was thinking everyone slept the way I did. Always heard people complain how they didn't sleep so well, so I figured it was like that every night for them as it was for me. Didn't really know one was supposed to sleep through the night, AND wake up refreshed. Didn't know that until I saw one of those first Ambien commercials way back when. Sometime after that I went to a doctor and had my first sleep study. Only I didn't really sleep, so they couldn't tell anything except that I had insomnia!  Some nights I only slept 30 minutes. Tried sleep restriction and that wrecked my life even more and tried all sorts of meds that turned me into a worse zombie. And back then Ambien made me suicidal after 3 nights, and I didn't sleep.

Been to many alternative doctors and have tried multiple supplements (singularly and in combinations) over the years, and have even been to a classical homeopathist who helped a lot using one remedy at a time.

The supplements I currently take are: liquid passionflower, valerian root, taurine, inositol, life extension's enhanced sleep with milk peptides (this one really helped me turn the corner), and a bunch of homeopathic combinations for insomnia and sleeplessness. Melatonin gave me trouble if I took too much at one time, or small amounts over long periods of time - so I gave up on it.

Oh, and a new mattress has helped also I think. I had a Tempurpedic and got rid of it, made me sweat. Bought an organic Healthy Choice mattress, and it feels so good. It is a natural latex foam mattress with organic wool topping and an organic bamboo covering. Keeps one cool in the summer and warm in the winter. No off-gassing or toxins like the Tempurpedic. I hate leaving my bed in the morning because it feels so good! 



Thomas Edison said:

I'm sorry to hear that you've had such a hard time of things, Mary.  44 years of insomnia sounds tough.

Regarding sleep aids, I've heard that rotating them every day or every few days makes it easier to avoid developing tolerances.  With regard specifically to Ambien and its ilk, it seems that very little is really known about how exactly it affects the body.  In general, sleep is a very complicated thing, and I imagine that 200 years from now, people will look back at our current techniques the way we look at blood letting and leeches.  Still, we have to work with what's available to us.

FWIW, I've used Nuvigil briefly.  The first day was great, but I quickly stopped feeling well and vowed not to take it on a regular basis.  I still have some for occasional use, but I don't think I would want to use it more than a couple of times per month.  You're probably wise to avoid such things, given that you say you're sensitive to all medicines.  The funny thing for me is that I'm not particularly sensitive at all outside of sleep medicine and Nuvigil.  Right now, I'm on antibiotics and prednisone, and I can't say it's had much of an effect at all.

Just out of curiosity, what other supplements do you take?

Thanks for the info, Mary.  I might try the Enhanced Sleep product--I notice that it contains ashwaghanda, which I've had a certain amount of success with.

Not sure how long you've been using CPAP, but I hope everything works out for you.  Although it's a bumpy ride for many people, it sounds as if you've made progress over your earlier days.

Using cpap just a year now. The first 3-4 months were awful, especially with such pronounced insomnia. The forgein object (hose, mask, etc) with all its noise and uncomfortableness, just made my sleep worse. But as you said, since then I have had some success with it. I usually only sleep half a night with it, to maintain my 4 hours of compliance. And I only can use it while I sleep on my back. Once I turn on my side, I get much gastric insufllation. But it definitely has helped, and I am sticking with it. And was only able to stick with it because of this discussion group. They got me over quite a bit of the hurdles.

Thomas Edison said:

Thanks for the info, Mary.  I might try the Enhanced Sleep product--I notice that it contains ashwaghanda, which I've had a certain amount of success with.

Not sure how long you've been using CPAP, but I hope everything works out for you.  Although it's a bumpy ride for many people, it sounds as if you've made progress over your earlier days.

Hi Mary and Thomas, Their was a segment on one of the Doctor tv programs about using sound to stimulate the brain in a positive direction. It was called the Baud Bio Acoustical utilization Device .The Doctor Frank Lawless Phd ABPP suggested it had many applications . It would be interesting to see if it works for insomnia also. Good Sleep,Chris  

Thanks, will give it a look see

Chris H said:

Hi Mary and Thomas, Their was a segment on one of the Doctor tv programs about using sound to stimulate the brain in a positive direction. It was called the Baud Bio Acoustical utilization Device .The Doctor Frank Lawless Phd ABPP suggested it had many applications . It would be interesting to see if it works for insomnia also. Good Sleep,Chris  

Interesting.  This seems to be a biofeedback device; not sure how it differs from other ones.  I've heard that such devices can be helpful in relaxing the sympathetic nervous system, which would obviously be helpful for people with insomnia.

Mary, I can't tell exactly how old you were 44 years ago, but you must have been quite young.  I wouldn't be surprised if you've had UARS the whole time, and that it later changed into sleep apnea.  (See Dr. Steven Park's book for details.)  I spent decades telling doctors that I had to wake up twice in the middle of the night to go to the bathroom, that I couldn't sleep without socks on, etc.  I even went to see a urologist, and it never occurred to him that sleep apnea could be causing my problems.  I had a sleep study 10 years ago that came back negative.  Now I'm 45 years old and while I haven't gained weight, stress or age or whatever has changed my UARS to sleep apnea.  I wouldn't really say I have insomnia myself; it's just that poor breathing wakes me up and I haven't resolved the interplay between my sinus infection and CPAP.


Chris H said:

Hi Mary and Thomas, Their was a segment on one of the Doctor tv programs about using sound to stimulate the brain in a positive direction. It was called the Baud Bio Acoustical utilization Device .The Doctor Frank Lawless Phd ABPP suggested it had many applications . It would be interesting to see if it works for insomnia also. Good Sleep,Chris  

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