Feeling Choke when Pressure Goes Up

Put the machine on something, table, box, whatever, a few inches lower... it doesn't have to be on the floor... use a little imagination and common sense.

Blood pressure usually goes down on Cpap, so maybe you need to talk to your MD about your BP meds and make adjustments.

FairwayGirl wrote:That's a lot of data, and what you are saying about how the fan makes me feel is spot on!

I remember when I was a newbie trying to explain how I felt overwhelmed by the air being forced down my throat. Only to be repeatedly told that I couldn't breath because my pressure was too low.

More seriously, I'm glad that I'm understanding what the problem really feels like. It can be quite important just to have somebody understand what you're going through when you are struggling with trying to make all this stuff work.

My biggest defense before was water! I would wake up at night and drink water, but now I can't :/ I choke as soon as I open my mouth :/

Turn the machine OFF. Then open your mouth. Even take your mask off for a few minutes if you want to. And get your drink of water. Yes. It's that simple. That's what the On/Off button is for. So use it. Keep a bottle of water by your bedside table and take a drink when you need to. Then mask back up and turn the machine back on and try to get back to sleep the best you can.

I am forgetful! I though I listed my pressure range. The doctor had it set from 7-10 with a ramp of 4 for 45 mins. The EPR is 3. But, my therapeutic level from my study was 8, I can't figure out why it's set to 10, and my DME thought it was too much as well, but he said he had to do what was written :/

Your DME can't do anything without explicit instructions from your doctor. You, however, can learn to get into the clinical menu and change that max pressure from 10 to 8. And given the fact that your titration test said that 8 is enough to be therapeutic AND the fact that once the pressure gets up to 10, you're absolutely miserable and cannot sleep, you've got good reasons to change that max pressure.

Besides, at this point learning how to sleep with the machine is actually more important than getting the machine AHI as low as possible. In other words, you're better off learning how to sleep with a max pressure of 8cm and a few more events than you are being miserable and getting little or no sleep until you get so frustrated that you just rip the mask off and go to sleep without it, and then have tons of events.

Your profile indicates you are using a PR DreamStation. The DreamStations do not have EPR. They have Flex as the exhalation relief system. Apparently you have the A-Flex set to 3, which provides maximum exhalation relief. Which sounds good in theory. But the way Flex works is that it first decreases the pressure at the start of the exhalation (to make exhaling easiser) and then it raises the pressure part way back up during the second half of the exhalation. Some people find that distracting and some people feel like the machine is trying to get them to inhale before they're finished exhaling. If you feel like that, you may want to turn Flex down to 2 or 1. Or even try turning it off altogether. The older PR machines like I use have a "Flex test" mode that lets you adjust the Flex in real time as you are using the mask at your (minimum) therapeutic pressure. This can be very useful in helping you figure out which Flex setting is the one that feels most natural to your breathing style. So read your patient's user manual and find out whether the DreamStations have a Flex test available and learn how to use it.

I've always had major issues with falling asleep, and average several hours before falling asleep. Then I wake up many time through out the night. (Now and before CPAP) I take gabapenten and 10mg of melatonin as well as having lavender oil on little cotton pads all to attempt to sleep.

As the unofficial president of the CPAP&Insomnia Club around here, I bid you a sad welcome.

And I'm going to give you some advice that I found very difficult to accept when I was a newbie. And the fact that I fought this advice for several months increased both the length of my miserable adjustment period and the misery I was experiencing each night in my own bed. My advice is:

Get some professional help in dealing with the insomnia issues. They are not likely to get better on their own. And in all seriousness, until you find a way to shorten that the sleep latency from several hours to more like 15-20 minutes you are likely to continue to have really serious problems using the CPAP and actually feeling any benefit from using the CPAP.

So start by making an appointment to talk to the sleep doctor and tell the staff that you want to speak to the doctor about the combination of how bad the adjustment to CPAP is going AND the fact that your insomnia is making it that much harder to adjust to CPAP. Before going to that appointment you need to sort out for yourself exactly what you want from the appointment.

It could be that a short course of sleeping pills may help. Or not. And a lot of people have real reasons for not wanting to take sleeping pills. I was extremely reluctant to take sleeping pills, and the PA who was dealing with me at the time suggested that I try cognitive behavior therapy for insomnia (CBT-I). CBT-I appealed to me far more than prescription sleeping pills did. But it was very hard work. You can get a sense of what I went through if you read the Taming the CPAP-Induced Insomnia Monster essay in my signature. The PA wanted me taking 5mg of Ambien on an "as needed" basis during the CBT. I was very resistant and while I picked up the 'script, I didn't really take it as often as I probably should have. One thing that it took me a long time to realize is that taking sleeping pills is a very effective and useful tool for keeping my erratic sleep times somewhat in control. And my body craves a regular sleep schedule in a way that makes my brain rebel. *sigh*

You also need to re-evaluate how much melatonin you are taking. The recommended dose for melatonin is really very, very small: Most of the studies of melatonin's effectiveness have shown that it is most effective in promoting sleep if taken in doses of 1/3 to 1 mg. As in 1/10 of the dose that you are taking. Moreover studies have also shown that taking too much melatonin can be counterproductive: It messes up your natural melatonin cycle to the point that the body just starts ignoring it.

I assume you're on the gabapenten because of restless leg syndrome (RLS). My dad has RLS and the gabapenten helps calm his legs down enough to get to sleep. How bad are your legs? And does the gabapenten help? If not, you need to report that to the sleep doc as well.

You can keep using the lavender oil on little cotton pads trick for inducing sleep while on CPAP. Just put the lavender oil on a cotton ball and place it right by the air intake of your DreamStation. The blower will pull the lavender smell in through the tub so that you will still be able to smell it all night long.

You might also want to pick up a copy of Sound Sleep, Sound Mind by Dr. Barry Krakow. The first half of the book is probably the best self-help book on insomnia out there. Not only does he write in some detail about what kinds of things cause insomnia, he has a whole slew of things to try along with an attitude that not everything is going to work for everybody. So his suggestions include a whole lot of the standard self help stuff, plus a whole lot of more odd-ball ideas that really do work well for a lot of people. It helped me understand my insomnia in a way that I'd never really understood it before.

I do have my machine even with my bed, but, if I lower it I won't be able to hit the buttons to see where it is,

If you can scrounge up something to use as a bedside table that is just 2 or 3 inches lower than the mattress that will help. And if the height difference is not too great, you will learn where the ON/OFF button is with a bit of practice.

I am hurting quite a lot every day, I'm guessing it's because I can't move during the night because of the hose. So I'm having to take pain meds every day for my back and neck.

You need to learn how to turn over with the hose. Seriously. Right now I think you're sleeping "scared". You're scared of moving for fear of getting entangled in the hose, disturbing the mask, and/or pulling the machine off the nightstand.

These machines are made to be used by even active sleepers. And while it's not great to pull a machine off the table and have it land on the floor, most machines are sturdy enough to survive an accident or two (or three).

Learn how to turn over with the hose when you're lying in bed trying to get to sleep, but not yet sleeping. My system is that I route the hose under the covers and I hold the hose as if it were a large stuffed toy snake. (My machine's nickname is Kaa, after the snake in the Jungle Book because of Kaa's Song.) Because the hose is in my hand it follows me when I turn from side to side. And I no longer have to wake up in order to do this.

Again: One really critical thing to realize is that you do NOT need to make significant adjustments to your preferred sleeping position just to use a CPAP. There are stomach sleepers, side sleepers, and back sleepers who use CPAP successfully. There are people who move around a lot in their beds who use CPAP successfully. It just takes a bit of time to learn how to do it.

I haven't had to take pain pills in years, but there have been days in the last few weeks I had to roll out of bed, and it took several tried to even do that!

Sounds like the combination of trying to force yourself to sleep in one position all night along with the general lack of sleep is catching up.

As background, I also take meds for migraines and epilepsy and to stablise my heart best and blood pressure (it drops very low and I black out!) those are on top of my pills to go to sleep, and for now I'm having to take Provigl daily :/ none of the pills I normally take have a negative effect on sleep.

What pills are you taking to go to sleep? Just the gabapenten and the melatonin? Or something else?

How much caffeine do you consume? And when are you taking the Provigl? It can make it more difficult to sleep at night even though it does make it easier to stay awake during the daytime.

You might also want to talk to a pharmacist (not just a doctor) about whether insomnia is a possible side affect for any of the prescription medication you are on. You'd be surprised at how many drugs can aggravate insomnia.

Turn the machine OFF. Then open your mouth. Even take your mask off for a few minutes if you want to. And get your drink of water. Yes. It's that simple. That's what the On/Off button is for. So use it. Keep a bottle of water by your bedside table and take a drink when you need to. Then mask back up and turn the machine back on and try to get back to sleep the best you can.

I was feeling so trapped by the air before I turned it down that turning it off and off was almost too much....this problem is resolved now!


Your profile indicates you are using a PR DreamStation. The DreamStations do not have EPR. They have Flex as the exhalation relief system. Apparently you have the A-Flex set to 3, which provides maximum exhalation relief. Which sounds good in theory. But the way Flex works is that it first decreases the pressure at the start of the exhalation (to make exhaling easiser) and then it raises the pressure part way back up during the second half of the exhalation. Some people find that distracting and some people feel like the machine is trying to get them to inhale before they're finished exhaling. If you feel like that, you may want to turn Flex down to 2 or 1. Or even try turning it off altogether. The older PR machines like I use have a "Flex test" mode that lets you adjust the Flex in real time as you are using the mask at your (minimum) therapeutic pressure. This can be very useful in helping you figure out which Flex setting is the one that feels most natural to your breathing style. So read your patient's user manual and find out whether the DreamStations have a Flex test available and learn how to use it.

I think I'm just a goober and couldn't figure out what the different was! I got it now thank you! If I don't have the Flex on max I cannot breath out and I choke and rip the mask off my face

As the unofficial president of the CPAP&Insomnia Club around here, I bid you a sad welcome.
I feel you. And myself and my whole family has had major sleep related issues our whole life...my big issue is I sleep great during the day, and cannot sleep at night. I am think I may be a vampire

And I'm going to give you some advice that I found very difficult to accept when I was a newbie. And the fact that I fought this advice for several months increased both the length of my miserable adjustment period and the misery I was experiencing each night in my own bed. My advice is:

Get some professional help in dealing with the insomnia issues. They are not likely to get better on their own. And in all seriousness, until you find a way to shorten that the sleep latency from several hours to more like 15-20 minutes you are likely to continue to have really serious problems using the CPAP and actually feeling any benefit from using the CPAP.
I have no idea where to even go to find someone to help with sleep issues :/

So start by making an appointment to talk to the sleep doctor and tell the staff that you want to speak to the doctor about the combination of how bad the adjustment to CPAP is going AND the fact that your insomnia is making it that much harder to adjust to CPAP. Before going to that appointment you need to sort out for yourself exactly what you want from the appointment.

I fired my sleep doctor because he and I did not see eye to eye. He lied to me on several occasions, and I have a real problem with that. I called to see someone else but it's still a month away. I've been doctor less for over a month now. Not a good way to start treatment

It could be that a short course of sleeping pills may help. Or not. And a lot of people have real reasons for not wanting to take sleeping pills. I was extremely reluctant to take sleeping pills, and the PA who was dealing with me at the time suggested that I try cognitive behavior therapy for insomnia (CBT-I). CBT-I appealed to me far more than prescription sleeping pills did. But it was very hard work. You can get a sense of what I went through if you read the Taming the CPAP-Induced Insomnia Monster essay in my signature. The PA wanted me taking 5mg of Ambien on an "as needed" basis during the CBT. I was very resistant and while I picked up the 'script, I didn't really take it as often as I probably should have. One thing that it took me a long time to realize is that taking sleeping pills is a very effective and useful tool for keeping my erratic sleep times somewhat in control. And my body craves a regular sleep schedule in a way that makes my brain rebel. *sigh*

My neurologist didn't want me to take sleeping pills for any kind of length of time, and I think I have always shyed away from them. I hate all meds, and I hate all the ones I'm on, but I am on a lot of them. I cannot afford the $50 CBT my sleep doctor wanted me to do.

You also need to re-evaluate how much melatonin you are taking. The recommended dose for melatonin is really very, very small: Most of the studies of melatonin's effectiveness have shown that it is most effective in promoting sleep if taken in doses of 1/3 to 1 mg. As in 1/10 of the dose that you are taking. Moreover studies have also shown that taking too much melatonin can be counterproductive: It messes up your natural melatonin cycle to the point that the body just starts ignoring it.

When I first started taking Melatonin I tried to take 1 pill, which is 5 mg, I may have even bought a 2 or 2.5 mg pill, nothing ever helped until I took 10. My sleep issues are specifically that I do not sleep at night, that's why I need to take it.

I assume you're on the gabapenten because of restless leg syndrome (RLS). My dad has RLS and the gabapenten helps calm his legs down enough to get to sleep. How bad are your legs? And does the gabapenten help? If not, you need to report that to the sleep doc as well.

I am not, but I find that very interesting, but I am pretty sure it makes my RLS MUCH worse! I saw a sleep doctor 6 months ago, but was not happy with him. He told me that I didn't have sleep problems but I had pain, and fibromyaga...which was a longshot! And he had no proof. He never did a sleep study or anything. He put me on gabapentin to increase slowwave sleep, which I do feel like I actally get better sleep quality when I take it, which is the only reason I take it. My current sleep doctor, er, most recent to be fired, told me he knows I have RSL, but he will not help me resolve it until I get the CPAP figured out. That's part of why he got fired

You can keep using the lavender oil on little cotton pads trick for inducing sleep while on CPAP. Just put the lavender oil on a cotton ball and place it right by the air intake of your DreamStation. The blower will pull the lavender smell in through the tub so that you will still be able to smell it all night long.

That's exactly what I do

You might also want to pick up a copy of Sound Sleep, Sound Mind by Dr. Barry Krakow.

I will look it up on Amazon!

I do have my machine even with my bed, but, if I lower it I won't be able to hit the buttons to see where it is,

If you can scrounge up something to use as a bedside table that is just 2 or 3 inches lower than the mattress that will help. And if the height difference is not too great, you will learn where the ON/OFF button is with a bit of practice.

I didn't explain that well, I need to SEE what the screen says. I can feel the buttons. I check and monitor the pressure all night. It wakes me up multiple times a night, and I check it when it does. I won't be able to see the screen if it's below me.

I am hurting quite a lot every day, I'm guessing it's because I can't move during the night because of the hose. So I'm having to take pain meds every day for my back and neck.

Y

ou need to learn how to turn over with the hose. Seriously. Right now I think you're sleeping "scared". You're scared of moving for fear of getting entangled in the hose, disturbing the mask, and/or pulling the machine off the nightstand.

I'm not sleeping scared, but my pillow scoots back. I have the hose routed up my headboard then down to me. Well, my pillow pins me to the headboard. I can't move. I am not scared to move, I just can't. I wear the DreamWear mask. My hose in on my head.

As background, I also take meds for migraines and epilepsy and to stablise my heart best and blood pressure (it drops very low and I black out!) those are on top of my pills to go to sleep, and for now I'm having to take Provigl daily :/ none of the pills I normally take have a negative effect on sleep.

What pills are you taking to go to sleep? Just the gabapenten and the melatonin? Or something else?

Yes, only those 2. I try to limit pills as much as I can. I truly hate meds!

How much caffeine do you consume? And when are you taking the Provigl? It can make it more difficult to sleep at night even though it does make it easier to stay awake during the daytime.

I have 1 tea a day (I usually get one large unsweet tea from Sonic in the morning at 7:00am) and that's it. Water the rest of the day. I take Provigl 1/2 around 7:30 and if I fall asleep at my desk I'll take another 1/2 at noon. Never after that. I actually take way less than the sleep doctor prescribed it to be.

You might also want to talk to a pharmacist (not just a doctor) about whether insomnia is a possible side affect for any of the prescription medication you are on. You'd be surprised at how many drugs can aggravate insomnia.

I should talk to the pharmacist, I never remember to do that. BUT, I have had 2 sleep doctors, and my neuro, my pcp and a couple other doctors all look at it and say it's not an issue. Since my lack of quality sleep has been an ongoing issue since I was 10. I had a sleep study done 2 years ago that was clear of any apnea and this one shows moderate apnea (of course sleep doc 2 wrote up that sleep study 1 shows signs, but it did NOT, he just likes to make things up ) anyway! It has been a very crazy week with next to zero sleep because I have had 2 days of migraines which means no CPAP. Which I will post about next! Thank you again for all your info!! Hope I answered some of your questions and I am still trying to figure out how to upload the screen shots I took![/quote]

What do you do when you have a migraine? I am very sensitive to sound, light, smell, pressure. Well, everything. I haven't been able to fully use my CPAP for 2 days because of a migraine. I was able to use it for 4 hours and 1 min last night when I woke up around 3 am and my migraine had disapated just enough. But, there was no way I could earlier. Does anyone else have any ideas? Also, please ignore my quotes, I was trying to quote not the whole post before! Just part...but obviously I still don't know what I'm doing!

FairwayGirl wrote:What do you do when you have a migraine? I am very sensitive to sound, light, smell, pressure. Well, everything. I haven't been able to fully use my CPAP for 2 days because of a migraine. I was able to use it for 4 hours and 1 min last night when I woke up around 3 am and my migraine had disapated just enough. But, there was no way I could earlier. Does anyone else have any ideas? Also, please ignore my quotes, I was trying to quote not the whole post before! Just part...but obviously I still don't know what I'm doing!

A forum search on "migraine".

search.php?keywords=migraine

Some/many people over the years have reported that their migraine experiences were lessened after they got on CPAP therapy.

Den

.

FairwayGirl wrote:What do you do when you have a migraine? I am very sensitive to sound, light, smell, pressure. Well, everything. I haven't been able to fully use my CPAP for 2 days because of a migraine. I was able to use it for 4 hours and 1 min last night when I woke up around 3 am and my migraine had disapated just enough. But, there was no way I could earlier. Does anyone else have any ideas? Also, please ignore my quotes, I was trying to quote not the whole post before! Just part...but obviously I still don't know what I'm doing!

I had to finally get serious about doing something for my migraines after starting CPAP.

My headache doc's PA tried me on three different prophylactic drugs that I could not tolerate. After washing out on the third drug, she suggested a gene test, which turned up a genetic anomaly that interferes with my ability to metabolize folate. A prescription vitamin version of metabolized folate along with megadoses of vitamin B2 and Magenesium (both prescribed by the PA) have brought my migraines under control. I also take a prescription triptan called Maxalt as a "rescue" med when a migraine starts.

My point is that there is a lot that can be tried to bring migraines under control. But it does require some patience and finding a doc who will work with you.

The vitamin B2 and magnesium combo is often recommended as a self-help thing to try for bringing migraines under control. The usual suggested dose is 400mg of B2 per day along with 400-500 mg of magnesium per day. I usually split the dose and take half in the morning and half in the evening.

robysue wrote:

FairwayGirl wrote:What do you do when you have a migraine? I am very sensitive to sound, light, smell, pressure. Well, everything. I haven't been able to fully use my CPAP for 2 days because of a migraine. I was able to use it for 4 hours and 1 min last night when I woke up around 3 am and my migraine had disapated just enough. But, there was no way I could earlier. Does anyone else have any ideas? Also, please ignore my quotes, I was trying to quote not the whole post before! Just part...but obviously I still don't know what I'm doing!

I had to finally get serious about doing something for my migraines after starting CPAP.

My headache doc's PA tried me on three different prophylactic drugs that I could not tolerate. After washing out on the third drug, she suggested a gene test, which turned up a genetic anomaly that interferes with my ability to metabolize folate. A prescription vitamin version of metabolized folate along with megadoses of vitamin B2 and Magenesium (both prescribed by the PA) have brought my migraines under control. I also take a prescription triptan called Maxalt as a "rescue" med when a migraine starts.

My point is that there is a lot that can be tried to bring migraines under control. But it does require some patience and finding a doc who will work with you.

The vitamin B2 and magnesium combo is often recommended as a self-help thing to try for bringing migraines under control. The usual suggested dose is 400mg of B2 per day along with 400-500 mg of magnesium per day. I usually split the dose and take half in the morning and half in the evening.

Thank you. I see my neuro in 2 weeks. I am currently taking topamax to prevent them. But have breakthrough migraines a few times a month. I'm the only person in my family with a history of them, but I would love to find out more of a reason why. I did do a search before asking here, but didn't see much about what to do to be able to be able to use a CPAP while having a migraine. Not how others may have gotten better...I thought I asked that clearly? Any tips would be greatly appreciated as I'm going to be non compliment since I can't handle the sound, smell, feel, or pressure of my machine again tonight. I should be okay for last night since I made it just over 4 hours (by one minute!) thank you to anyone that can give tips!

FairwayGirl wrote:

And I'm going to give you some advice that I found very difficult to accept when I was a newbie. And the fact that I fought this advice for several months increased both the length of my miserable adjustment period and the misery I was experiencing each night in my own bed. My advice is:

Get some professional help in dealing with the insomnia issues. They are not likely to get better on their own. And in all seriousness, until you find a way to shorten that the sleep latency from several hours to more like 15-20 minutes you are likely to continue to have really serious problems using the CPAP and actually feeling any benefit from using the CPAP.

I have no idea where to even go to find someone to help with sleep issues :/

Any sleep doc should be able to at least give you some basic help on what kinds of things you can and should be doing in regards to the insomnia. Almost any decent therapist should be able to help with CBT-I. Some sleep docs are willing to work with patients on CBT-I. Some primary care physicians can even do the basics of CBT-I.

If you really want or need to do it on the cheap, you can even try to do CBT-I on your own. But it really helps to have someone who can hold you accountable when you start to backslide. CBT-I requires some real committment to long term changes in behavior. Sound Sleep, Sound Mind is a good place to start with trying to do CBT-I on your own.

I fired my sleep doctor because he and I did not see eye to eye. He lied to me on several occasions, and I have a real problem with that. I called to see someone else but it's still a month away.

Bring it up with the new guy when you see him. In the mean time, keep a sleep log to document the problem. (That's often the first thing a sleep doc will ask you to do when it comes to dealing with insomnia if you don't want to take sleeping pills.) And try some CBT-I things on your own. And call the new doc's office back and tell them you'd like to be put on a cancelation list---i.e. if someone calls to cancel an appointment, you'd like the chance to be seen earlier than your currently scheduled appointment.

My neurologist didn't want me to take sleeping pills for any kind of length of time, and I think I have always shyed away from them. I hate all meds, and I hate all the ones I'm on, but I am on a lot of them. I cannot afford the $50 CBT my sleep doctor wanted me to do.

First, $50 for CBT-I is not an outrageous charge. But if it's too expensive, then you can try to do CBT-I on your own. It's just that you don't have anybody to hold you accountable.

When I first started taking Melatonin I tried to take 1 pill, which is 5 mg, I may have even bought a 2 or 2.5 mg pill, nothing ever helped until I took 10. My sleep issues are specifically that I do not sleep at night, that's why I need to take it.

Bring up this massive dose of melatonin with your new doc. Even though you think it is working, it could be making things much worse rather than better.

I assume you're on the gabapenten because of restless leg syndrome (RLS). My dad has RLS and the gabapenten helps calm his legs down enough to get to sleep. How bad are your legs? And does the gabapenten help? If not, you need to report that to the sleep doc as well.

I am not, but I find that very interesting, but I am pretty sure it makes my RLS MUCH worse!

Gabapentin is an anti-epileptic drug that is commonly used to treat nerve pain from shingles, RLS, and seizures. It's also used off label for insomnia. If you are not taking gabapentin for RLS, then what are you taking it for?

And why are you convinced that it makes your RLS much worse? And if it does make the RLS much worse, then you need to report that to the prescribing doctor as an unacceptable side effect.

I saw a sleep doctor 6 months ago, but was not happy with him. He told me that I didn't have sleep problems but I had pain, and fibromyaga...which was a longshot! And he had no proof. He never did a sleep study or anything. He put me on gabapentin to increase slowwave sleep, which I do feel like I actally get better sleep quality when I take it, which is the only reason I take it.

Ok, there are two separate things here.

1) Sleep doc #1 is an idiot and he should have sent you for a sleep study.

2) What you are saying about the gabapentin is contradictory. You just told me that the gabapentin makes your RLS much worse, which would imply that it does not increase the quality or quantity of your sleep. Yet now you are telling me that you do get better sleep when taking the gabapentin. Which is it?

My current sleep doctor, er, most recent to be fired, told me he knows I have RSL, but he will not help me resolve it until I get the CPAP figured out. That's part of why he got fired

I think you are being a bit unfair to this sleep doc: When OSA is found in a person with potentially multiple sleep disorders, there is a real tendency to focus on getting the CPAP stuff figured out first before trying to treat everything at one time. There are some good reasons for doing it this way.

First, untreated OSA can manifest itself in ways that mimic other sleep disorders. It can also cause other sleep disorders. And treating the OSA often eliminates the symptoms of the other sleep disorders. In other words, for many people with both OSA symptoms and RLS symptoms, the RLS symptoms disappear once the OSA is properly treated with CPAP. But properly treating OSA with CPAP means getting to the point where you are sleeping at least 4-6 hours every night AND you're sleeping with the CPAP for the full time you are asleep AND the treated AHI is below 5. Now if RLS symptoms persist after the CPAP therapy has been optimized and you're getting enough sleep every night, then it's reasonable to start treating the RLS symptoms as well. That's the rationale behind the second sleep doc's wanting to focus on getting the PAP adjustment done first.

I do have my machine even with my bed, but, if I lower it I won't be able to hit the buttons to see where it is,

If you can scrounge up something to use as a bedside table that is just 2 or 3 inches lower than the mattress that will help. And if the height difference is not too great, you will learn where the ON/OFF button is with a bit of practice.

I didn't explain that well, I need to SEE what the screen says. I can feel the buttons. I check and monitor the pressure all night. It wakes me up multiple times a night, and I check it when it does. I won't be able to see the screen if it's below me.

Why? Why do you need to SEE what the screen says in the middle of the night? Why do feel like you have to do all this middle-of-the-night monitoring of the pressure?

That's part of what is making it impossible for you to relax enough to get back to sleep: Instead of just fixing the problem by turning the machine off and back on---which reduces the pressure back to the minimum pressure setting---you are prolonging the wake and making it more difficult to get back to sleep by your insistence that you have to know what the damn pressure setting is every time you wake up. There is no need to monitor the pressure all night long. If you wake up, just hit the on/off button twice. That will turn the machine off and back on and when the machine comes back on, it will be at its lowest setting. And knowing that the pressure is now back at its lowest setting should be enough to help you relax enough to get back to sleep.

If you have to obsess about tracking all the wakes and whether it's the pressure or something else that's waking you up, the time to do that is in the morning---not in the middle of the night. If you just turn the machine off and back on every time you wake up during the night without looking at the machine's LCD to check the pressure, you will have a record of exactly what was going in when you look at the data in SH. The OFF/ON cycle will be clearly present in your data. You'll be able to determine exactly when the wake occurred and you will be able to tell exactly what the pressure was when you woke up enough to turn the machine off and back on.

you need to learn how to turn over with the hose. Seriously. Right now I think you're sleeping "scared". You're scared of moving for fear of getting entangled in the hose, disturbing the mask, and/or pulling the machine off the nightstand.

I'm not sleeping scared, but my pillow scoots back. I have the hose routed up my headboard then down to me. Well, my pillow pins me to the headboard. I can't move. I am not scared to move, I just can't. I wear the DreamWear mask. My hose in on my head.

I don't see how the pillow pins you to the headboard. This just doesn't make any sense to me.

The reason people chose to route the hose overhead is to make it easier to turn over and move around in bed. It gets the hose up out of the covers. If there's enough slack in the hose after it crosses the headboard, you should be able to freely move from side to side without any problems.

You might also want to talk to a pharmacist (not just a doctor) about whether insomnia is a possible side affect for any of the prescription medication you are on. You'd be surprised at how many drugs can aggravate insomnia.

I should talk to the pharmacist, I never remember to do that. BUT, I have had 2 sleep doctors, and my neuro, my pcp and a couple other doctors all look at it and say it's not an issue.

Talk to the pharmacist. The doctors are not always aware of how multiple drugs interact. And they're particularly not knowledgeable about the drugs other doctors prescribe. Nor are they always aware of all of the reported side effects.

FairwayGirl wrote: Thank you. I see my neuro in 2 weeks. I am currently taking topamax to prevent them. But have breakthrough migraines a few times a month.

Does the topmax work? In other words has the number of migraines decreased since starting the topamax?

You need to report the breakthrough migraines to the neuro. And s/he should prescribe a rescue med for you to take at the beginning of a breakthrough migraine. Be sure to tell the neuro that you have to have something you can take when a migraine hits at night and the migraine is making it more difficult to use the CPAP.

When I take the Maxalt as soon as I am experiencing the beginning of a migraine, the migraine literally melts away and I am pain free within 15 minutes more than 90% of the time.

I did do a search before asking here, but didn't see much about what to do to be able to be able to use a CPAP while having a migraine.

You're not going to like my answer: Before I got the Maxalt prescription I just sucked it up and put the damn mask on and suffered until I fell into a fitful sleep. And usually woke feeling almost as bad as I did when I went to bed. And I didn't get the Maxalt script until I was about 9 months into PAPing. So there were a lot of migraines that I suffered through while using CPAP at the start.

Sometimes a standard OTC pain pill like ibuprophen would take enough of the edge off the pain that I could tolerate the mask and get to sleep easier. A lot of the times it didn't. But I just suffered through it as best I could. See here's the thing: I was really very, very stubborn and hard on myself since I was convinced that if I did not use the machine for one night that I would wind up never using the machine at all. I knew that for me, it was all or (most likely) nothing. And I was unwilling to let the damn machine beat me.

And in one particularly freaky bit of "luck" I finally figured out how to sleep in my favored position on a night where I had a monstrous migraine and I no longer cared whether the mask was going to leak or get dislodged in the middle of the night. That night I carefully put my pillow next to the small of my hubby's back and stuck my nose (mask and all) right next to him and pulled the covers over my head. And woke up the next morning with a much milder migraine. And the realization that with a CPAP hose I didn't have to "come up for air" when I had my head buried under the covers. That was a small victory in coming to terms with the fact that I if I had to use this thing, that at least there were somethings that it would be useful for.

By the way since noise is an issue for you, you ought to be aware of this fact: If the machine was not sitting at the height of your mattress, it won't seem so noisy to you. My husband's CPAP sits at bed level on the other side of the bed and mine is 6 inches below the mattress. I hear his machine a lot more than I hear my own.

Okay, I'm going to try to remember things correctly as I'm responding, since I messed up the quotes last time! The sleep doctor I most recently fired (sleep doctor 2) was who wanted me to pay $50 for the CBT. I have done a LOT of research online to do self CBT, but, I have done it for years and had zero results. I also have a lot of anxiety and bought a book on that, but hasn't work out well either. I haven't bought the book you recommended yet, but plan on it on Friday when I get paid (we had my son's birthday party to pay for today!) There were MANY reasons I did not get along with my most recent sleep doctor and he lied to me about many things. I didn't go into all the details about why I fired him. But, there are many. I have very low tolerance for lies and cheaters. He was both. Sadly, I found out after seeing him several people that had seen him had also left him for the same reason, it would have been great if they told me that BEFORE sending me there. I have brought up my dose of melatonin to both sleep doctors I have seen and my pcp, and everyone thought it was good? Not sure why they were okay with it? I am sorry for not being clear about the gabapentin. I am taking it to increase slow wave sleep. It makes me stay asleep better, and it makes my sleep deeper. With out it I do not get any restful sleep at all. BUT, it makes it harder to fall asleep, because it makes me RLS worse. Since starting taking the gabapentin my RLS has been hitting me every night. BUT, my RLS comes in waves. I have it bad for a month, then it's gone for 6 months. It could just be bad right now. As I've just had to start taking the gabapentin again since starting the CPAP. I was off of it until I started the CPAP. But, my sleep is so bad now that I have to take all my sleeping pills. Sorry for all the confusion on that! I am on Vimpat as an anti-epileptic drug, though. AND the guy that gave me the gabapentin thought I had fipromyaga, so that was part of his treatment plan. I agree that my 1st sleep doctor was an idiot!! And I hope I cleared up the confusion on gabapentin. Please trust me I am not being unfair at all to sleep doctor 2. I am still thinking about calling a lawyer and suing him. There was a lot more than that stuff going on I do understand about not being able to look into the RLS, but I wasn't asking him at the time. You are correct that I shouldn't worry about the machine. I am extremely OCD and I track everything. I would like to say that keeping it low would make me not look at it. But, it would mean that I would get out of my bed to do it. I also constantly look at the time when I wake up. I just check things over and over during the night. I also bought a pulse ox thing...I check if over and over during the night :/ (this OCD is something else I am trying to work on!) The reason my pillow traps me is because the hose is pressed between my pillow and my headboard. I cannot move. I wake up, then try to move, but I can't move (that is when I can move, I sometimes am paralyzed when I wake up!) then I have to try to shimmy down, which is very hard to do because my head is trapped to the headboard. I just kinda scoot up during the night. My hose slides down from the headboard down below my pillow and I'm stuck. So far all my doctors have all my other doctor's drugs meds listed in the computer and it shows if any of them have any interactions. I had one that had an interaction, once. It was actually my OB that caught it! All of my doctors are connected anymore, its crazy! But, I will definitely double check them with my pharmacy I think you asked somewhere about getting in quicker to see doctor number 3. He could see me much sooner. BUT, I can't get there because I need someone to get my kids from school. My husband is taking college classes until 8pm and 11pm during the week, and my mom works every other week. I had to get them during the every other week that my mom is off. And, they could get me in so much earlier during the weeks my mom was working! Just couldn't do it during her off weeks I actually could have been in there in 2 days! But, that would be her last day (she works Wednesday to Tuesday, it's a really weird schedule!) So they had to schedule me way out. And, it's WAY across town, so I had to schedule it when she could get my kids, and I could actually make it out there I don't have anyone else that can get my kids. (we don't live in an area that my kids can ride the bus, sadly!)

On my migraines. Yes, the topamax works great!! I just dropped the dose down recently because I was not liking the side effects. But, it has been working well. Honestly, I have missed about 2 months of my dose of it because I ran out and have been working on a lot of medical issues with my son. Even on my best with Topamax, I always have breakthrough migraines 1-2 a month, but these have lasted longer than they normally do. My neuro gave me imatrex to take when it starts, and it did nothing. I took Ibuprofen, and that did a lot more than the imatrex. There is no way I can put the mask on and fight through it when I'm throwing up. I was just shy of going to the ER. I'm lucky to not throw up when they hit like that. The noise that is the issue isn't the machine, it's the mask. I can't stand the noise the air coming out of the mask makes. The machine noise I can't hear over the mask...my husband was really worried about me last night when I started screaming at the mask and I ended up throwing it...the noise was driving me a little crazy I have some sensory issues The good news is I know where my son gets his sensory issues! Thank you so much for all your help!

On another note, my AHI has not increased since dropping my pressure from 7-10 to 6.5-8! It's almost exactly the same! And I feel 100x better wearing it. I still don't feel good during the day yet, but I'm still giving it time

FairwayGirl,

You need to get some help for the OCD stuff. Seriously. It's ruining your sleep. It may be ruining your life.

My guess is the OCD is part of why your attempts to do CBT on your own have not worked. Part of CBT is learning how to give up trying to control things that you can't control.

There is absolutely no reason that you should be looking at the machine every time you wake up in the night: It is causing you to stay awake long enough for the wake to be genuinely disruptive to your sleep.

One huge part of my own CBT-I involved teaching me how to not prolong wakes to make them last long enough for me to remember them in the morning.