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OSA? CSA? Not Sure What I Have + Antihistamines

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tiredofbeingtired +0 points · over 2 years ago Original Poster

For the past few years I have been experiencing gradually decreasing quality of sleep, along with occasional episodes where I would wake up at night slightly out of breath (particularly during the early stages of sleep and/or early transition from wakefulness to sleep), as well as very rare episodes of insomnia. I went to see a sleep doctor approx 4 months ago (he is also an ENT) and did a take home sleep test. Ironically, when I did the take home sleep test, I barely slept at all (I estimate I may have actually dozed off about 2 hours) - every time I was about to transition to sleep, I would wake up. I told the doctor this but he nonetheless felt the data was valid and told me I had mild to moderate sleep apnea. He prescribed a dental appliance. I happen to grind my teeth, so I figured this would kill two birds with one stone. FYI: I know sleep apnea is not limited to overweight people, but just as FYI, I am a fit male, 30, non-smoker and rarely drink.

Fast forward to today and I am using my dental appliance on a consistent basis for about the past two months. However, I feel as if my symptoms have only gotten worse, not better. Moreover, they are an odd and confusing mix of both physical and mental. For starters, when I wear the dental appliance I wake up 1-3 times a night with very dry mouth. That alone might not be too concerning because I hear the dental appliance can cause that. However, there are other symptoms that are increasing in severity and/or frequency:

  • a throat choaking/gagging sensation when I am sleeping with the appliance, which becomes especially pronounced as I transition from wake to sleep. This does not seem to abate even if I change sleeping positions.
  • when I am asleep, the sleep contains lots of vivid dreams (more so than in the past) and feels very light. I do not wake up feeling rested (even less so than in the past).
  • I have recorded audio of myself sleeping - I can be heard occasionally groaning/moaning.
  • In the 1-3 times I wake up during the night, I can feel a moderate amount of sweat on my shirt. This did not happen very often before - now it is almost guaranteed every night.
  • Insomnia/Trouble falling asleep: here is where the symptoms get varied and confusing. 100% of the time, I have struggles transitioning from wakefulness to sleep - I will drift off but wake up again. This will happen 2-4 times per night before I finally fall asleep (so it usually takes me 30-90 minutes to fall asleep and stay asleep). About 80% of the time, I am relatively confident this waking sensation is physical - I can feel my gag reflex being activated and a choking sensation below my chin but above my adam's apple. However, about 20% of the time, I can sense that I am waking from not breathing, but the lack of breathing does not seem to be physical/obstructive - it just seems like I "forgot" to breathe. About 1 day per week this kind of struggle to fall asleep results in insomnia - I will pretty much struggle like this the entire night and not really get any prolonged sleep (for some reason Sunday appears the most common).
  • A week ago these issues started bleeding into the day: I would have dry mouth during the day; I would feel like my tonsils were really enlarged and were blocking my airways; I would frequently feel like I "forgot" to breathe during the day (for example, when I am concentrating on reading something) - when I noticed, a jolt of anxiety would course through my body. This may have been psychosomatic anxiety and it may have been my nervous system being on high alert. These daytime symptoms have largely gone away this week though.

I am waiting on my insurance to authorize another take home sleep test, but given the first experience, I am skeptical. My sleep doctor is kind of a dismissive dick - he always looks bored and tells me not to worry after 5 minutes. However, I am worried/very scared about the following:

  • how do I know this isn't central sleep apnea? or mixed apnea? I think 80% of the time my symptoms are physical but there are times, as mentioned above, when they feel nervous system related.
  • Antihistamines: I am worried about the issues of organ damage at night if it is central asleep apnea. Taking an antihistamine like zzzquil is like the only way I can get to sleep at this point (and even that is not guaranteed to work), but I am worried that that will make my apnea worse. So it becomes a difficult choice between no sleep or worsened apnea.
  • I bought a pulse oximeter which has an alarm you can set for low oxygen saturation. I am using this as insurance to prevent getting into any severe episodes at night. Is there a level you recommend setting it at to be safe? On the flip side, I don't want to be woken up too frequently.
  • I am also taking the following sleep aids: melatonin, magnesium, lemon balm, glycine, and valerian. Any issues with these? Can these be dangerous for my sleep apnea?

Please - any help, thoughts, advice, or just some simple commiseration would be welcome. Thank you.

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jnk +0 points · over 2 years ago

Time for CPAP. No need for another diagnostic test. Maybe a titration PSG to see how you react to pressures, or trial on APAP first. But not a diagnostic. An OSA diagnosis is for life, so no need to verify that.

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tiredofbeingtired +0 points · over 2 years ago Original Poster

Just to give an update - I used the oximeter with alarm last night. Set the alarm at SPO2 level of 88% - it went off shortly after drifting off to sleep and saw the level was at 86%. Terrifying. I set the alarm at a lower level of 74 because I figured - what if I'm just going to get woken up every 20 minutes and not sleep a wink tonight? It took me a while to get back to sleep but the alarm never went off. I don't know what the actual lowest SPO2 level was as I haven't had time to plug in the data and look at it. Anybody know what a good alarm safety level is that I should be setting?

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KindPinkGuanaco9781 +0 points · over 2 years ago

Agree that it is time to get on pap therapy asap. I have also had a challenging course with OSA and, like you, my first physician was also a dismissive "it will all be ok" type of person. I finally sought out another opinion from a fully boarded sleep medicine physician who all he does is sleep medicine. He immediately transitioned me from cpap to apap -- all my problems solved.

My point here, given what you have described, is that it is crucial to seek the right physician who can help you work through all these issues. Someone who does sleep medicine full time. Best of luck to you and keep us posted on your progress. You will feel better with the right treatment.

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wiredgeorge +0 points · over 2 years ago Sleep Enthusiast

Does a doctor who is a dismissive dick get appended after his name? hehehe (sorry).

I distrust a two hour doze-athon being an accurate assessment of your sleep issues. Get an in-clinic study done followed by a titration study. This will be the point where you will be armed with enough information to make a decision which direction therapy should go. Although the current dental appliance seems to be not working, don't rule out that avenue of therapy out of hand. Perhaps the wrong dentist was involved. If you do go PAP, you will be armed with the best set of facts from the titration study for a proper initial prrescription. Others have urged you to not bother with another evaluation but I think you started the diagnosis process on shaky footing with possibly a possibly poor set of results and conclusions and would definitely see another doctor; this time, look at reviews and ratings carefully and don't be afraid to travel a bit to find one who is respected and capable and is NOT a dd.

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ncgoaliemom30 +0 points · over 2 years ago

I would caution the accuracy of the home tests. I had one that said I had "mild" apnea that didn't require any treatment (even though it showed my osats dropped to 70%). My doctor wasn't satified and sent me for a clinical test. It showed I had 91 episodes an hour and had severe apnea. I was given a CPAP machine immediately. I'd work to get a clinical setting test instead of wasting money on another home test.

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tiredofbeingtired +0 points · over 2 years ago Original Poster

Thanks. I will push for a clinical study. Ironically my doctor is an "award winning" otarynologist and runs a full time sleep clinic.

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wiredgeorge +0 points · over 2 years ago Sleep Enthusiast

Maybe the national otarynologist society has participation awards? The doc is an ENT spectialist if I understand the otarynologist term correctly and perhaps should stick to his field of expertise and not be running a sleep clinic. If he does run a sleep clinic, why no in-clinic study? And how the heck could anyone make sense of an in-home, 2 hours restless study?

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jnk +0 points · over 2 years ago

To address some of the details mentioned in your post:

"a throat choaking/gagging sensation when I am sleeping . . . . , which becomes especially pronounced as I transition from wake to sleep."

There is a name for that. It is called "an apnea." CPAP will prevent that from happening.

"when I am asleep, the sleep contains lots of vivid dreams (more so than in the past) and feels very light. I do not wake up feeling rested (even less so than in the past)."

When apneas occur, they keep you from getting consolidated sleep and prevent you from staying in deep sleep. That is what is causing you to remember the more vivid dreams and what is causing your sleep to be less than refreshing to you. Your sleep is bad because of the untreated apneas.

"In the 1-3 times I wake up during the night, I can feel a moderate amount of sweat on my shirt. This did not happen very often before - now it is almost guaranteed every night."

This may, or may not, also be related to the untreated apnea. Your body is put under severe hormonal distress during the apneas, which can be the direct cause of what you are experiencing or can be a contributing cause of what you are experiencing with the night sweats.

" . . . struggles transitioning from wakefulness to sleep - I will drift off but wake up again. . . . feel my gag reflex being activated and a choking sensation . . . sense that I am waking from not breathing, . . . seems like I "forgot" to breathe. . . . struggle to fall asleep results in insomnia - I will pretty much struggle like this the entire night . . . "

What you describe amounts to a classic description of untreated OSA. CPAP can fix all of the above.

"a jolt of anxiety would course through my body. . . . nervous system being on high alert."

Again, classic OSA. Your body has to make a lot of panic juice to have it at the ready for jolting you awake. That usually all goes away, for night and for day, once you have CPAP optimized so that your body learns it will never ever ever have to jolt you awake again to allow you to breathe.

"how do I know this isn't central sleep apnea? or mixed apnea? I think 80% of the time my symptoms are physical but there are times, as mentioned above, when they feel nervous system related."

The answers to those questions don't matter yet until after you are on optimized CPAP for a number of months. OSA can cause mixed apneas and central apneas when it is left untreated. Treat the obstructions and the other related issues will have a chance to resolve. But nothing can be healed until your upper airway has the positive airway pressure(s) required for you mind and body to heal from what you have been experiencing for way too long. CPAP has the potential to change your life and to save it. Give it that chance.

"Antihistamines: I am worried . . . will make my apnea worse. So it becomes a difficult choice between no sleep or worsened apnea."

Being on any drug with sedating effects is potentially life-threatening to someone with untreated OSA, and trust me that from your description your OSA is NOT being treated. Your choice is between (1) breathing well and sleeping well while using optimized CPAP or (2) strangling, choking, suffocating, panicking, sleeping badly, being exhausted and sleepy. Those are your two choices. It should not be a difficult one. But it is yours to make.

"I bought a pulse oximeter which has an alarm you can set for low oxygen saturation. I am using this as insurance to prevent getting into any severe episodes at night. Is there a level you recommend setting it at to be safe? On the flip side, I don't want to be woken up too frequently."

A pulse oximeter does absolutely nothing to help your sleep or your breathing, and right now, those two functions are your primary concerns, based on what you describe. On the other hand, CPAP should improve your breathing and your sleep. Which one, oximeter or CPAP, do you think you should be using at night, then? One just tracks a problem without treating it and makes your sleep worse. The other fixes your problem and let's you sleep and improves your sleep.

"I am also taking . . . melatonin, magnesium, lemon balm, glycine, and valerian. Any issues with these? Can these be dangerous for my sleep apnea?"

Your sleep apnea is dangerous with or without the substances you mention. Melatonin is basically just a cheap substitute for good sleep hygiene. ("Sleep Hygiene" is a good subject for anyone with sleep issues to google.) The other substances are not known to increase sleep risks substantially or to be of much help with sleep, to the best of my knowledge. On the other hand, none of those substances are significantly helpful to someone like you who has untreated OSA, either. Basically, ALL drugs and substances can be considered dangerous for someone with untreated OSA, since any substance you take into your body has some effect on sleep, and the sleep is already severely damaged every night until you get your airway open all night every night so you can start getting some air and some sleep.

In summary, don't overthink what is happening at night until you have a CPAP that you are using all night every night at optimized pressures. Your primary problem, based on what you describe, is very simple and straightforward, not complicated at all. You don't have many problems. You have one: Your airway needs to be open for sleep, and right now it isn't. That one simple problem has one very simple solution. It is slightly pressurized air gently delivered to your upper airway. That solution is called CPAP. That solution is simple, miraculous, tested, confirmed, validated, backed up, applauded, and heralded by patients, doctors, payers and observers around the world. Do not continue to deny yourself the benefits of it. You deserve to give yourself the chance to get better. Please.

Stop being satisfied with attempting to treat the mere symptoms. Treat the cause. An OSA patient doesn't have OSA once he always sleeps with CPAP. Even a severe OSA patient can live life having fewer apneas than the general population once he gets his pressures optimized. CPAP doesn't treat symptoms, it gets at the root of the problem and SOLVES it.

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tiredofbeingtired +0 points · over 2 years ago Original Poster

You are absolutely right. I will push for CPAP. I am not sure if my doctor will prescribe it without another test, but I will push for it nonetheless and at the very least try to get an in-clinic test.

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jnk +0 points · over 2 years ago

Getting the treatment may be more important than getting evaluated again diagnostically, in your case. The purpose of the diagnostic test is to qualify you to try the treatment, after all. Response to treatment can be a bit of a test in and of itself, if your payers are on board with that. If your doc has already diagnosed you as having OSA, another diagnostic test would only be valuable if needed by someone as a baseline against a titration PSG to prove the effectiveness of treatment to the payer. And your first diagnostic test may be sufficient for those purposes. You may not want to request/demand anything yourself as a patient that would delay your getting treatment as soon as possible. It can be silly to spend more money on a diagnostic test to qualify for a treatment than what the cost of the treatment is.

Don't get me wrong--I believe in the value of diagnostic PSG and full-night titration PSGs. That gets you the best starting pressure and makes sure the pressure doesn't cause/unmask any other sleep issues. But with all you have been through, according to what you describe, time may be of the essence. You NEED to be on CPAP sooner rather than later, if at all possible. So you may want to put more stress on getting the treatment than on mere diagnostic evaluation.

Of course, I am just a fellow patient. You need to be on the same page as your medical team and your payer for it all to work medically and financially.

I personally used a dental appliance DURING my treatment, in order to keep my mouth closed for using nasal pillows. So it isn't always an either/or question between dental appliance and PAP, from the point of view of us as patients. Using both together has some merit, even though payers rarely think in those terms.

I wish you the best.

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sleeptech +0 points · over 2 years ago Sleep Enthusiast

If you have central apnoeas, the only way to properly assess that, and certainly to treat it, is with an in-lab study.

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jnk +0 points · over 2 years ago

CSA is notoriously slippery to diagnose for some, since some people can go several nights with no significant centrals then have a night with scores of them, one right after another. So one night of diagnostic testing may not be enough to document the centrals if it happens to be a night that is without them. I don't consider a one-night PSG to be enough to be able to rule out CSA troubles consistently.

On the other hand, a person with moderate-to-severe OSA has a problem that is highly likely to show up on any given night of diagnostic testing. It is easy to forget that difference in nature between the two types of events.

And many of the mixed apneas and pressure-induced centrals that happen in a titration can eventually go away with successful treatment at the optimum pressure, once the body adjusts to the pressure over several weeks with all-night-every-night use of CPAP. That doesn't happen with all, though. So if the centrals are disturbing sleep, and the root cause of the centrals can't be assessed and otherwise treated, ASV may turn out to be just the thing. But that sometimes requires its own detailed titration and followup to get the best settings dialed in.

I only mention all that because some docs have claimed that a one-night PSG has proved someone can't possibly be having problems with CSA. I ain't no doc, but based on the patterns of research and anecdotal data in the forums, I am bold enough as a layman to vocally beg to differ with that assessment/assumption. You can get reliable positive results when testing for centrals for one night but not a reliable negative finding, IMO.

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