My story; something I learned

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
So Sincere
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My story; something I learned

Post by So Sincere » Tue Oct 06, 2015 7:46 pm

I'm new to this forum and wanted to pass along something I learned. I started sleeping A LOT in 2007/2008. It affected my job and personal relationships. After seeing a few doctors, I diagnosed it as idiopathic hypersomnia. One doctor said it might be due to sleep apnea, so I had the sleep study, and they found I had 70+ apneic episodes per hour. Who knew, right!? I occasionally snored a bit, but my wife didn't think it was unusual or notice any apnea. Anyway, I've been on a BiPAP machine ever since.

You know what? It didn't help at all and had no subjective affect on my health. I have excellent compliance and have stuck to it because it's good for me, with maybe a one year lapse in the middle when I couldn't bear using the machine any more. I still hit the bed right when I got home from work and slept on weekends. As long as I was active, I was okay, but if I slowed down a bit, I'd get so so groggy that I had to sleep. It was like a drug. (I actually enjoyed it. Lots of interesting dreams. But this was no way to live.) Anyway, earlier this year, I read that a possible side effect of Lexapro, which I had been taking for many years for anxiety, was sleepiness. After consulting with the prescribing doctor, I tapered off of it over a couple of months. My normal dose was 20mg/day. At the 10mg point, I finally felt relief. I've been completely off of it now for three or four months and no longer have hypersomnia! I'm a little grouchy without the Lexapro, and, if my wife ever insisted, I would go back on it at the 5 or 10mg daily dose.

So... if you're using your XPAP machine but still sleeping too much, consider your medicine. And, from my own experience, you need to take control of the situation. Consult with your doctors like I did, but you do the research and you make the decisions. They failed me in this situation and in another similar one, where a drug I was taking was elevating liver enzymes but neither my cardiologist nor my neurologist nor my psychologist nor my GP even considered it as the cause. I looked it up myself--possible liver damage was like the first or second listed side effect.

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Julie
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Re: My story; something I learned

Post by Julie » Tue Oct 06, 2015 8:58 pm

Excellent note!

linda00145
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Re: My story; something I learned

Post by linda00145 » Tue Oct 06, 2015 11:15 pm

Wonderful post here by you. I really am surprised to read out your post.

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49er
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Re: My story; something I learned

Post by 49er » Wed Oct 07, 2015 2:46 am

So Sincere wrote:I'm new to this forum and wanted to pass along something I learned. I started sleeping A LOT in 2007/2008. It affected my job and personal relationships. After seeing a few doctors, I diagnosed it as idiopathic hypersomnia. One doctor said it might be due to sleep apnea, so I had the sleep study, and they found I had 70+ apneic episodes per hour. Who knew, right!? I occasionally snored a bit, but my wife didn't think it was unusual or notice any apnea. Anyway, I've been on a BiPAP machine ever since.

You know what? It didn't help at all and had no subjective affect on my health. I have excellent compliance and have stuck to it because it's good for me, with maybe a one year lapse in the middle when I couldn't bear using the machine any more. I still hit the bed right when I got home from work and slept on weekends. As long as I was active, I was okay, but if I slowed down a bit, I'd get so so groggy that I had to sleep. It was like a drug. (I actually enjoyed it. Lots of interesting dreams. But this was no way to live.) Anyway, earlier this year, I read that a possible side effect of Lexapro, which I had been taking for many years for anxiety, was sleepiness. After consulting with the prescribing doctor, I tapered off of it over a couple of months. My normal dose was 20mg/day. At the 10mg point, I finally felt relief. I've been completely off of it now for three or four months and no longer have hypersomnia! I'm a little grouchy without the Lexapro, and, if my wife ever insisted, I would go back on it at the 5 or 10mg daily dose.

So... if you're using your XPAP machine but still sleeping too much, consider your medicine. And, from my own experience, you need to take control of the situation. Consult with your doctors like I did, but you do the research and you make the decisions. They failed me in this situation and in another similar one, where a drug I was taking was elevating liver enzymes but neither my cardiologist nor my neurologist nor my psychologist nor my GP even considered it as the cause. I looked it up myself--possible liver damage was like the first or second listed side effect.
So Sincere,

I am so glad you found that the drugs were the culprit in your situation. It really bothers me that so many doctors as what happened in your situation don't consider the fact that they could be the culprit when a patient complains about symptoms. It is almost like they consider it a moral failing if they are forced to acknowledge that which of course is absurd as most patients understand there aren't guarantees with meds. But to not even consider that they could be a factor just boggles my mind. Sorry for my rant but your post obviously struck a nerve.

Agree you wrote a great post.

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SleepyCarey
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Re: My story; something I learned

Post by SleepyCarey » Wed Oct 07, 2015 7:27 am

So Sincere,

This is such a helpful post, thank you so much for sharing your story. I hope many others read this.

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ChicagoGranny
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Re: My story; something I learned

Post by ChicagoGranny » Wed Oct 07, 2015 8:17 am

So Sincere wrote: I read that a possible side effect of Lexapro, which I had been taking for many years for anxiety ...
You don't come right out and say it, but I believe there is a lesson here that is bigger that your story of the side effects of drugs.

That bigger lesson is that you were diagnosed with anxiety or depression and prescribed an SSRI. The proper diagnosis would have been OSA including sleep deprivation. The proper prescription would have been CPAP therapy. You should have started CPAP many years earlier than you did.

It seems this has happened to millions of people.

So Sincere
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Re: My story; something I learned

Post by So Sincere » Wed Oct 07, 2015 9:41 pm

ChicagoGranny, thanks for your reply. I had been taking SSRIs for decades (for anxiety, not depression), long before I started snoring or having sleep apnea. Plus, since I've gotten off Lexapro, the anxiety has come back even though I'm compliant with my BiPAP machine. I suppose it's conceivable that I've had sleep apnea since my early twenties, but I seriously doubt it.

As an aside, my BiPAP unit was recently causing severe sleep deprivation. It would wake me up every 45 minutes at the peak of its ramp-up cycle with a completely dry mouth and a lot of air being forced down my esophagus. I'd go back to sleep, but get woken up again every 45 minutes. I assume I never reached REM or even level-3 sleep. This went on for a month or two. The effects were dizziness and complete exhaustion as if I hadn't slept for days. I couldn't work and, while I didn't fall asleep at the wheel, driving was kind of scary. I had the RT drop the pressure back down, and I'm better now with only a couple dry-mouth episodes a night, which I'm still working to eliminate.

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Cereal Killer
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Re: My story; something I learned

Post by Cereal Killer » Thu Oct 08, 2015 7:00 am

So Sincere wrote:I suppose it's conceivable that I've had sleep apnea since my early twenties, but I seriously doubt it.
Conceivable? I think it was there most of my life. It took a near crisis stage to get something done about it. Doctors have been extremely lax on getting people diagnosed. "It's easier to prescribe a pill."

So Sincere wrote:It would wake me up every 45 minutes at the peak of its ramp-up cycle with a completely dry mouth and a lot of air being forced down my esophagus. I'd go back to sleep, but get woken up again every 45 minutes. I assume I never reached REM or even level-3 sleep.
Your equipment profile shows you are using a nasal interface. You are breathing through your mouth at times during the night, and most likely you are having apneas that are causing the awakenings. Air pressure is being lost through your mouth, and the therapy is no longer effective. Apneas and sleep deprivation are probably causing your current anxiety.

Are you using Sleepyhead to see what is going on in bed? If not, you SURE need to.

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SleepyCarey
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Re: My story; something I learned

Post by SleepyCarey » Thu Oct 08, 2015 9:17 am

ChicagoGranny wrote:That bigger lesson is that you were diagnosed with anxiety or depression and prescribed an SSRI. The proper diagnosis would have been OSA including sleep deprivation.
With all due respect, I disagree with any of us attempting to diagnose anyone. As he states, he had anxiety even after xPAP therapy. OSA & sleep deprivation is not the only cause of anxiety/depression and xPAP does not alleviate all anxiety/depression.

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Macpage
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Re: My story; something I learned

Post by Macpage » Thu Oct 08, 2015 10:14 am

So Sincere wrote:I had been taking SSRIs for decades (for anxiety, not depression), long before I started snoring or having sleep apnea. Plus, since I've gotten off Lexapro, the anxiety has come back even though I'm compliant with my BiPAP machine. I suppose it's conceivable that I've had sleep apnea since my early twenties, but I seriously doubt it.
I am glad you are working towards success and are looking at the whole picture. The great folks here can really help with all that is related to Pap therapy. Most will also point out the factual information that most ADM's have side effects/mechanisms that can affect sleep in manners that are not always positive.

However, there are certainly cases where ADM's may be necessary even if a detriment to sleep. We as forum members may not be qualified to recognize these cases. This is a matter for the individual and their medical professionals. Also, in our attempts to inform Pap users in general of ADM side effects related to sleep, we often forget to note that there are a few ADM's used in low dose that may not have as many or any negative effects related to "sleep".

Sleep disordered breathing can certainly cause anxiety/depression, insomnia, and all the major health risks we know so well. However, many of these conditions are so weaved together along with diet, sleep hygiene, other medications, pain, etc. that it's very hard to find one treatment/modification that is a revelation. It's often a case of doing the best we can in all these areas and monitoring where that leads us.

I would suggest working with the folks here to optimize your therapy as a first step. It's a lot easier to look beyond sleep disorders when one's therapy looks to be reasonably well adjusted. If you still find anxiety to be an issue, speak with your physician about medication that might be suited to your specific situation and then verify your comfort level with noted medications through your own research.

You may want to read through this post that has a lot of good information:

viewtopic/t96164/Fractured-sleep-Ambien ... hings.html

Please keep in mind that not everything mentioned here is appropriate for everyone or necessarily best for sleep. However, there are a lot of knowlegeable folks in these specific matters who posted in this thread and you can follw them in other threads as well.

I wish you all the best,

Mike

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Susie Kay
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Re: My story; something I learned

Post by Susie Kay » Thu Oct 08, 2015 11:26 am

I must be one of the lucky ones who refused pills. My husband was shocked when I got home and told him what the doctor wanted to give me. We both kept digging and thinking about my symptoms, and finally I had a sleep study that confirmed sleep apnea.

There's no telling where I would be today if I had starting taking the pills the doctor wanted to prescribe.

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Re: My story; something I learned

Post by Pugsy » Thu Oct 08, 2015 11:48 am

Meds can come with some pretty nasty side effects and not just those in the SSRI category.
My sister was complaining of monumental daytime fatigue and finally happened to research her blood pressure meds and come to find out fatigue was a non uncommon side effect. She talked to her doctor about it and they switched BP meds and she told me it was like night and day the difference she felt with the new meds. The extreme fatigue simply went away.

This is why one of the first things we ask cpap users that come here not feeling the good numbers is "are you on any meds" because often meds are the culprit for a lot of our unwanted daytime symptoms.
Rule out the obvious first and go from there.
Now of course sometimes it isn't possible to just abruptly discontinue or change meds for various reasons but sometimes it is a boost to the morale if we know that part of our problem could be related to meds.

Dig deep for the side effects...I take a pain pill during the day for my arthritis that comes with a "may cause drowsiness" sticker so you would think I would be drowsy and/or be able to use it to help me sleep at night but there's a small percentage of people who react the other way with it and insomnia is a known side effect for a small number of people and I happen to be one of those people. It wires me up and if I take it in the evening if I can get to sleep I usually can only sleep about 3 hours and then I am wide awake and sometimes I can't even get to sleep for several hours past my normal bedtime.

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archangle
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Re: My story; something I learned

Post by archangle » Thu Oct 08, 2015 12:50 pm

Watch out for "CPAP blindness." That's when you or your doctor tend to blame all medical problems on apnea/CPAP. Don't forget that an apneac with perfect CPAP treatment is still susceptible to all the problems that affect people without apnea.

Lots of doctors (and patients) have CPAP blindness. Or obesity blindness, diabetes blindness, smoking blindness, blood pressure blindness, etc.

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Chevie
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Re: My story; something I learned

Post by Chevie » Thu Oct 08, 2015 1:22 pm

archangle wrote:CPAP blindness. Or obesity blindness, diabetes blindness, smoking blindness, blood pressure blindness,
You forget blindess blindness.

sleepyfox
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Re: My story; something I learned

Post by sleepyfox » Thu Oct 08, 2015 2:03 pm

Great post So Sincere, thanks for sharing and I'm glad you've found some relief.

I have a similar story, except mines was a couple of months before started CPAP. For years I felt horrendous, and a good chunk of that I now know is UARS. However another big chunk of the exhaustion, as well as depression, hot flashes and flu symptoms were caused by the contraceptive implant, which all improved massively once I had it removed, after the recommded three years. I feel angry that none of the many doctors I saw ever mentioned this, and the government webpage on the drug is very misleading regarding side effects. There are actually thousands of stories on the web of women suffering major side effects. I think there can be a bias in the medical profession to downplay or even deny the seriousness of side effects.