3 failures for sleep study test

[Rurik]

Im making this post to air my frustration and maybe get advice from someone who faces similar issues.
To start off this past year I've been sent to sleep doctor for possible apnea since twin brother has it and i have some symptoms that point to it.
I am autistic and its hard for me to adjust to foreign devices on my body or sleep any other way that the way I'm comfortable with which is my stomach.
My first at home test failed i couldn't fall asleep at all was moving restless irritated anxious after 3 hours i took device off. This was even while being under 1mg of clonazepam to help relax, my autism was strong enough to overwhelm the drug and not let me fall asleep until i took off the device, once that happened i passed out within 2 minutes.
The 2nd test i was prescribed 10mg ambien also at home test. This drug however had no sedative effects on me and only gave me a headache and made my mouth extremely dry to the point i drank 5 12 oz water bottles and was getting up to piss every 30min. I ended up taking the device off then took headache medicine and passed out without any devices 2 hours later.
Then they had me come to the lab which was even worse than at home because many more wires and limited movement.a I was given 3mg of lunesta and again this drug barely had any effect(my mouth was also dry but this time tongue tasted like i had ate copper wires) and what effect it produced was not enough to overpower irritability, anxiety and massive restlessness due to being uncomfortable and unfamiliar place. After the 3rd test the doctor decided to just give up and not want to treat me anymore he mentioned that i should find someone else for 2nd opinion which to me doesn't make sense. I don't understand why he is deciding to give up. Another somewhat related story was that when i had gallbladder inpatient surgery and had the drainage tube and me and was not allowed to sleep on the stomach i had to be sedated for the next 3 days with triazolam in order to sleep. The surgeons were much smarter and understood that my psychological condition was causing issues. Therefore they did something about it.
So did anyone have trouble like me and if so how was it resolved, what steps did doctor take to make sure the tests were complicated successfully knowing the situation patient is?

[robysue1]

After the 3rd test the doctor decided to just give up and not want to treat me anymore he mentioned that i should find someone else for 2nd opinion which to me doesn't make sense. I don't understand why he is deciding to give up.

So find another doctor who is more willing to work with the fact that you have autism.

Another somewhat related story was that when i had gallbladder inpatient surgery and had the drainage tube and me and was not allowed to sleep on the stomach i had to be sedated for the next 3 days with triazolam in order to sleep. The surgeons were much smarter and understood that my psychological condition was causing issues. Therefore they did something about it.

When you find a new doctor, make sure you tell them that after you had gall bladder surgery, you needed to use triazolam in order to sleep. It sounds like triazolam should have been prescribed for your sleep tests rather than the drugs that you were given.

So did anyone have trouble like me and if so how was it resolved,

Lots of folks have trouble sleeping during a sleep test. Usually a sleeping aid can be prescribed. But since you've already had failed sleep tests with 1mg of clonazepam, 10mg ambien, and 3mg of lunesta prescribed, it is important to make sure the next sleep doc knows that clonazepam, ambien, and lunesta did NOT allow you to sleep, but triazolam did allow you to sleep after the gall bladder surgery. So you would like to have a single dose of triazolam prescribed for the night of your sleep study.

Since you are also dealing with autism, it is worth asking: Are you under the care of a specialist for the autism? If so, bring up the problem of dealing with all the sensory stuff that a sleep test requires with your specialist. They may also have some useful suggestions.

what steps did doctor take to make sure the tests were complicated successfully knowing the situation patient is?

I think the most critical thing for you is finding a doctor who is willing to really listen to what you tell him/her. That can be difficult, but it is not impossible.

First get a long list of names of sleep doctors from your primary care doctor's office. And then start making phone calls, as painful as that might be.

If I were you, I think the first thing I'd do with each potential new sleep doctor is ask for a consulting appointment that takes place before any sleep test is done. Tell the person on the phone that you've had three sleep tests that failed to get any useful data because you were unable to get any sleep with the medication prescribed AND that you have autism and difficulties with things touching your body. So you need to talk to the doctor before a sleep test is done in order to find out if the doctor is ok with prescribing triazolam, which is known to help you sleep, instead of ambien or lunesta, both of which do NOT help you sleep, and also to pick the sleep doc's brain for other ideas the doctor might be able to suggest for insuring that you get some sleep on the next sleep test. If a sleep doctor's office is not willing to let you make a consulting appointment before a sleep test given your circumstances, then move on to the nex

Finally, for what it's worth: They don't need a full night of sleep data, but they do need at least 2 hours of sleep data over the course of the night.

[ChicagoGranny]

?

Have you been seeing a psychologist or counselor who helps people with autism? Is he competent, and do you like him? If so, it might help to discuss this with him.

[Rurik]

I see a psychologist once a month and yes they are competent. They helped me adjust my life routine to avoid stressor and I have same routine every day that it's impossible for me to break without suffering or getting panic attacks/stress.

[Rurik]

After the 3rd test the doctor decided to just give up and not want to treat me anymore he mentioned that i should find someone else for 2nd opinion which to me doesn't make sense. I don't understand why he is deciding to give up.

So find another doctor who is more willing to work with the fact that you have autism.

Another somewhat related story was that when i had gallbladder inpatient surgery and had the drainage tube and me and was not allowed to sleep on the stomach i had to be sedated for the next 3 days with triazolam in order to sleep. The surgeons were much smarter and understood that my psychological condition was causing issues. Therefore they did something about it.

When you find a new doctor, make sure you tell them that after you had gall bladder surgery, you needed to use triazolam in order to sleep. It sounds like triazolam should have been prescribed for your sleep tests rather than the drugs that you were given.

So did anyone have trouble like me and if so how was it resolved,

Lots of folks have trouble sleeping during a sleep test. Usually a sleeping aid can be prescribed. But since you've already had failed sleep tests with 1mg of clonazepam, 10mg ambien, and 3mg of lunesta prescribed, it is important to make sure the next sleep doc knows that clonazepam, ambien, and lunesta did NOT allow you to sleep, but triazolam did allow you to sleep after the gall bladder surgery. So you would like to have a single dose of triazolam prescribed for the night of your sleep study.

Since you are also dealing with autism, it is worth asking: Are you under the care of a specialist for the autism? If so, bring up the problem of dealing with all the sensory stuff that a sleep test requires with your specialist. They may also have some useful suggestions.

what steps did doctor take to make sure the tests were complicated successfully knowing the situation patient is?

I think the most critical thing for you is finding a doctor who is willing to really listen to what you tell him/her. That can be difficult, but it is not impossible.

First get a long list of names of sleep doctors from your primary care doctor's office. And then start making phone calls, as painful as that might be.

If I were you, I think the first thing I'd do with each potential new sleep doctor is ask for a consulting appointment that takes place before any sleep test is done. Tell the person on the phone that you've had three sleep tests that failed to get any useful data because you were unable to get any sleep with the medication prescribed AND that you have autism and difficulties with things touching your body. So you need to talk to the doctor before a sleep test is done in order to find out if the doctor is ok with prescribing triazolam, which is known to help you sleep, instead of ambien or lunesta, both of which do NOT help you sleep, and also to pick the sleep doc's brain for other ideas the doctor might be able to suggest for insuring that you get some sleep on the next sleep test. If a sleep doctor's office is not willing to let you make a consulting appointment before a sleep test given your circumstances, then move on to the nex

Finally, for what it's worth: They don't need a full night of sleep data, but they do need at least 2 hours of sleep data over the course of the night.

Before I move to a new doctor I filed a grievance against the sleep doctor for not listening to my concerns as I've told him all 3 times before the test this will be troubling for me and that adjustments need to be done. I did tell him about Triazolam however he claed that that's not used for sleep studies. When I failed the 3rd test I told the doctor I told you so multiple times this will happen because I know how I am, idk if he didn't believe me or didn't care, but he just said you need to go get a second opinion? Second opinion for what? We aren't able to do proper tests so what is there 2nd opinion for? In top of that these tests cost money.

[robysue1]

Before I move to a new doctor I filed a grievance against the sleep doctor for not listening to my concerns as I've told him all 3 times before the test this will be troubling for me and that adjustments need to be done. I did tell him about Triazolam however he claed that that's not used for sleep studies. When I failed the 3rd test I told the doctor I told you so multiple times this will happen because I know how I am, idk if he didn't believe me or didn't care, but he just said you need to go get a second opinion? Second opinion for what? We aren't able to do proper tests so what is there 2nd opinion for? In top of that these tests cost money.

If I were you, I'd take that doctor's saying to get a second opinion as an open invitation to find a better, more competent doctor.

Seriously. This one has demonstrated that he is unwilling to listen to you and unwilling to work with you. So you need a new doctor---one that will listen and one that will work with you. They're not easy to find: It took me four tries before I found a guy who really listened to me rather than treating me like a mushroom.

[Rurik]

I understand that but nevertheless the hospitals company policy states that they are here to build doctor patient relationship and answer any questions, so by refusing to answer my questions the doctor broke that company policy and i want to know what hospital has to say about it. I want them to investigate if their own policies were broken.

[robysue1]

I understand that but nevertheless the hospitals company policy states that they are here to build doctor patient relationship and answer any questions, so by refusing to answer my questions the doctor broke that company policy and i want to know what hospital has to say about it. I want them to investigate if their own policies were broken.

Sure, you can spend some of your valuable time and energy trying to get this particular doctor in trouble. Or you can rack it up to "this doctor and you just don't get along very well" and move on to a different doctor.

In the end, it's important to remember that doctors are people too. Most of them do their best to work with most of their patients most of the time. But sometimes? The communication between a particular doctor and a particular patient is just not there. And, quite frankly, in that case, it is simpler to just move on to finding a new doctor who is better matched to your personality and your needs as a patient.

So in all seriousness, I would ask you to think long and hard about your answer to this particular question:

Do you want to get to the bottom of your sleep problems and then attempt to fix those problems under the care of a doctor who you can work with OR do you want to punish this particular doctor for not being able to work with the particular patient named you?

If you are interested in trying to fix your sleep problems? Get a new doctor.

[McSleepy]

I see a psychologist once a month and yes they are competent. They helped me adjust my life routine to avoid stressor and I have same routine every day that it's impossible for me to break without suffering or getting panic attacks/stress.

I'd put my money on the therapist helping you adjust to the new change in your life. It seems that in your case, no amount of meds or external forces will make you comfortable with CPAP life. You need to get yourself to accept this and make it part of your comfort zone. This is not a rational process and it'd be hard to justify it because "it's the right thing to do" or because other people are telling you it's what you need to do. But you are here, so you've made the first step (unless it's to assure yourself that "nothing can be done", in which case we are all wasting our time). Although few CPAP users have had the level of hardship and difficulties you're facing, we've all have had to overcome a certain amount of adversity to get to where we are. You can get a lot of support here, mostly technical (and a lot of rejection, too, unfortunately), but you already have done the right thing and sought professional help that you trust - work with them on this major challenge in you life. By the way, I don't see how once a month would be sufficient for this major undertaking, but I'm sure yo have your reasons. I wholeheartedly wish you good luck!

McSleepy

[Rurik]

I understand that but nevertheless the hospitals company policy states that they are here to build doctor patient relationship and answer any questions, so by refusing to answer my questions the doctor broke that company policy and i want to know what hospital has to say about it. I want them to investigate if their own policies were broken.

Sure, you can spend some of your valuable time and energy trying to get this particular doctor in trouble. Or you can rack it up to "this doctor and you just don't get along very well" and move on to a different doctor.

I want him to apologize, if he cannot do that I will take it all the way up. Today I involved a representative from American and Disibilities act.

In the end, it's important to remember that doctors are people too. Most of them do their best to work with most of their patients most of the time. But sometimes? The communication between a particular doctor and a particular patient is just not there. And, quite frankly, in that case, it is simpler to just move on to finding a new doctor who is better matched to your personality and your needs as a patient.

So in all seriousness, I would ask you to think long and hard about your answer to this particular question:

Do you want to get to the bottom of your sleep problems and then attempt to fix those problems under the care of a doctor who you can work with OR do you want to punish this particular doctor for not being able to work with the particular patient named you?

If you are interested in trying to fix your sleep problems? Get a new doctor.

[Rurik]

I see a psychologist once a month and yes they are competent. They helped me adjust my life routine to avoid stressor and I have same routine every day that it's impossible for me to break without suffering or getting panic attacks/stress.

I'd put my money on the therapist helping you adjust to the new change in your life. It seems that in your case, no amount of meds or external forces will make you comfortable with CPAP life. You need to get yourself to accept this and make it part of your comfort zone. This is not a rational process and it'd be hard to justify it because "it's the right thing to do" or because other people are telling you it's what you need to do. But you are here, so you've made the first step (unless it's to assure yourself that "nothing can be done", in which case we are all wasting our time). Although few CPAP users have had the level of hardship and difficulties you're facing, we've all have had to overcome a certain amount of adversity to get to where we are. You can get a lot of support here, mostly technical (and a lot of rejection, too, unfortunately), but you already have done the right thing and sought professional help that you trust - work with them on this major challenge in you life. By the way, I don't see how once a month would be sufficient for this major undertaking, but I'm sure yo have your reasons. I wholeheartedly wish you good luck!

McSleepy

There is no way I'll be able to use Cpap even if I get diagnosed most likely I'll go for one of those new surgeries.

[robysue1]

I see a psychologist once a month and yes they are competent. They helped me adjust my life routine to avoid stressor and I have same routine every day that it's impossible for me to break without suffering or getting panic attacks/stress.

I'd put my money on the therapist helping you adjust to the new change in your life. It seems that in your case, no amount of meds or external forces will make you comfortable with CPAP life. You need to get yourself to accept this and make it part of your comfort zone. This is not a rational process and it'd be hard to justify it because "it's the right thing to do" or because other people are telling you it's what you need to do. But you are here, so you've made the first step (unless it's to assure yourself that "nothing can be done", in which case we are all wasting our time). Although few CPAP users have had the level of hardship and difficulties you're facing, we've all have had to overcome a certain amount of adversity to get to where we are. You can get a lot of support here, mostly technical (and a lot of rejection, too, unfortunately), but you already have done the right thing and sought professional help that you trust - work with them on this major challenge in you life. By the way, I don't see how once a month would be sufficient for this major undertaking, but I'm sure yo have your reasons. I wholeheartedly wish you good luck!

McSleepy

There is no way I'll be able to use Cpap even if I get diagnosed most likely I'll go for one of those new surgeries.

If you've already decided that you will never be able to use a CPAP and that you will opt for surgery, then why are you posting here?

The primary purpose of this forum is to help people who are trying to make CPAP work, but who are running into difficulties making it work. If you don't even intend on trying to make CPAP work if/when you get diagnosed, why are you here?.

And I stand by what I've said before: You need a new doctor and new clinic for your next sleep test. The more time you spend complaining about this particular doctor and sleep clinic and the longer you put off looking for a new sleep doctor, the longer it will be before you manage to get a sleep test done where you manage to get enough sleep for the test to be valid. ("Enough sleep" usually means as little as 2 or 3 hours of highly fragmented sleep during the entire sleep test.)

If you do decide on "one of those new surgeries" you will need to be sure you know all of the following things:

1) How many surgeries of the particular type you are contemplating has the surgeon done?

2) What are the most common complications the surgeon runs into with his/her patients?

3) How does the surgeon define successful surgical treatment for OSA? (Some definitions of "success" are nothing more than a 50% reduction in events, and that can leave a person with very severe OSA still suffering from moderate-to-severe apnea after the surgery.)

4) What are the long term consequences of the surgery and the long term consequences of the common complications?

5) Will the surgeon refer you to a sleep clinic after you heal for a sleep test to verify that the surgery "worked"?

6) How painful is the surgery itself and how long is the healing period? What kind of restrictions are there during the healing period?

At any rate, good luck on whatever it is you are after.

[Rurik]

Well I wasnt complaining just stating a simple fact that there is no way that my body would be able to fall asleep with something like that. So what other options are left? And the hospital called me after speaking with the administration doctor changed his mind and agreed to try to treat me. No need to change doctors when you can teach existing one to properly do his job.

[McSleepy]

Well I wasnt complaining just stating a simple fact that there is no way that my body would be able to fall asleep with something like that. So what other options are left? And the hospital called me after speaking with the administration doctor changed his mind and agreed to try to treat me. No need to change doctors when you can teach existing one to properly do his job.

I'd have to agree with you that it's hard to fall asleep in all sorts of unusual circumstances. I've had three in-hospital sleep studies and I could never fall fully asleep (REM) during any of them - neither at the beginning (before getting on CPAP) nor after years of having gotten used to it. But that doesn't mean they can't get any useful information from it; getting to N3 is enough for the results to be very conclusive. And, to get this out of the way: at-home sleep studies have very limited capabilities and usefulness, and only work for some people, under certain circumstances, so I recommend going for the full polysomnography. You don't need to take any sleep aids (I never did) - after all, the value of the conclusions from an unnaturally induced sleep are at best full of pros and cons, and at worst - questionable, so just be yourself, try resting (easier said than done, with all the wires coming out of your body and preventing you from freely moving around), and you'll be alright. Frankly, at that point, once you're diagnosed and issued a prescription for a good CPAP machine (if you can convince your doctor to write it for a nice ResMed VAuto, it'd be great; we can coach you on how to do that, too), you can then start playing with your settings, getting tons of assistance from the multitude of knowledgeable and helpful members of this board, and get to where you need (and want) to be. But - do talk to your therapist as much as you can about all this - in this case, having the right mindset is more important than anything else.

McSleepy

[Rurik]

Well I wasnt complaining just stating a simple fact that there is no way that my body would be able to fall asleep with something like that. So what other options are left? And the hospital called me after speaking with the administration doctor changed his mind and agreed to try to treat me. No need to change doctors when you can teach existing one to properly do his job.

I'd have to agree with you that it's hard to fall asleep in all sorts of unusual circumstances. I've had three in-hospital sleep studies and I could never fall fully asleep (REM) during any of them - neither at the beginning (before getting on CPAP) nor after years of having gotten used to it. But that doesn't mean they can't get any useful information from it; getting to N3 is enough for the results to be very conclusive. And, to get this out of the way: at-home sleep studies have very limited capabilities and usefulness, and only work for some people, under certain circumstances, so I recommend going for the full polysomnography. You don't need to take any sleep aids (I never did) - after all, the value of the conclusions from an unnaturally induced sleep are at best full of pros and cons, and at worst - questionable, so just be yourself, try resting (easier said than done, with all the wires coming out of your body and preventing you from freely moving around), and you'll be alright. Frankly, at that point, once you're diagnosed and issued a prescription for a good CPAP machine (if you can convince your doctor to write it for a nice ResMed VAuto, it'd be great; we can coach you on how to do that, too), you can then start playing with your settings, getting tons of assistance from the multitude of knowledgeable and helpful members of this board, and get to where you need (and want) to be. But - do talk to your therapist as much as you can about all this - in this case, having the right mindset is more important than anything else.

McSleepy

Appreciate the advice but there is literally 0% i will fall asleep with any kind of wires. Just as during my gallbladder surgery something like 30 hours after it due to drainage tube, infusion and having to lay on the back i couldn't fall asleep until sedated every night for next 5 nights. It was either that or me unplug infusions, drainage and risk sepsis/death. Eventually when I do the study properly sedated and if diagnosed I will need to seek alternative options. In order for ne to fall asleep with any devices/masks would need sedation, and its not logical to sedated every night to use CPAP. I'm not trying to sound complicated but realistically those are my options. Advices like "just relax", "learn to deal with it are useless. Go smoke some methamphetamine(never done it or will) and try to fall asleep, ill tell you just relax, learn to deal with it and see if stupid advice like that helps an unconventional person. That's how I can describe trying to fall asleep with devices on me.