The insomnia monster raises its head again and again ....

[robysue]

Pre-CPAP, midnight was my basic median bedtime---about 50% of the time I was in bed and asleep by midnight, and about 50% of the time, I was in bed and asleep by maybe 1:00 am unless there was some special occasion going on like New Year's Eve. On my diagnostic sleep study I fell asleep a bit after midnight, which was about an hour after "lights out". On my first titration study, I think the newness of the mask made it take me until close to 12:30 to fall alseep, which about 1 1/2 hours after "lights out."

Since starting CPAP/APAP/BiPAP on Sept. 23 (about 105 days ago), I've managed to get to bed, turn the mask on and stay in bed and fall asleep before midnight for only a dozen times or so.

In the last month (32 days or so), I've I've managed to get to bed, turn the mask on and stay in bed and fall asleep before midnight for a grand total of only three times.

I've been able to mask up and stay in bed and fall asleep before 2:00 am a total of 19 out of the last 32 days and about 50 of the days since starting CPAP back on Sept. 23.

And on 13 of the last 32 days (and 4 of the last 8 days), I have NOT been able to mask up and stay in bed and fall asleep before 2:00. Since Sept. 23, this has happened about 55 times.

Last night was a BAD example of the old insomnia monster up to his worst tricks.

I tried to go to bed at a normal bed time: I was genuinely sleepy when I went to go to bed around 12:30. I felt nice and relaxed and I didn't expect to have any problems falling asleep. It had been a good day and I was appropriately tired, but not too exhausted. I was yawning and sleepy. I turned my iPod on, I put the mask on, and turned the machine on. Since the pressure felt a bit like "force-breathing, I went ahead and hit the ramp button, which I don't always do. My ramp is now set to start at 6.5/4.5 and ramps up to my prescribed 8/6 in 30 minutes. Please note: I do NOT feel like I'm suffocating at this "low" pressure---I do sometimes feel like I'm being force-fed air at 8/6, however, and that's when I turn the ramp on. With the ramp on last night, I felt no discomfort breathing and I did not feel like a stuffed goose. I laid down and pulled the covers up, expecting to listen to the Christmas-oriented Georgorian chant on the iPod while drifting off to sleep.

And then the problems with trying to get comfortable started: The FX's exhaust flow was particularly bad for some reason last night. If it was not blowing on my arm, it was blowing down my chest. Or bouncing off the covers into my eyes. Or bouncing back and chapping my lips. And the noise the System One makes was also more irritating last night than it's been in the past as well. Or the BiPAP pressure starts to tickle the back of the throat (again). Or the humidity (or lack of it) bothers the nose and I have to adjust the humidifier setting (again). The net result: I tossed and turned and pushed and pulled the covers for the whole time the ramp was on. By the time the ramp went off, I simply could not stand the jet plane exhaust flow from the FX any more and threw the mask across the room and started screaming. *sigh* This has not been the first time I've lost my temper in the middle of the night. My poor husband had to pick up the pieces of my fragile emotional self and we spent a long time talking. By 2:00 am, I was ready to try again. For three hours and ten minutes (according to Encore Viewer), the System One was on. During most of this time, I was NOT asleep. I won't say I was wide awake the entire time---the data shows three OA's (spread out over all three hours) and some snoring (all in the last hour), but I remember most of the songs on the iPod and I remember hitting the Sleep button enough times to cover the full three hours with music. And I remember the music going off at the end of the three hours and me getting angry at still being more awake than asleep and throwing the mask off again at that point. And waking my poor hubby up again. And we talked for a solid hour about my insomnia and the apnea and the damn noise the System One makes and the jet engine noise from the FX and the jet engine exhaust fan flow from the FX and the fact that I just cannot sleep in a proper robin-ball with the mask on (think of a small furry animal with its paw over its nose and you'll get a picture of how I used to sleep pre-CPAP). Around dawn, I finally took my long suffering husband's advice and fell asleep on his shoulder without the mask on for about an hour or an hour and a half. Hubby got up around 7:30; he told me I had been snoring softly, but not alarmingly. After he got himself off, I put the mask on and and fell asleep pretty quickly (as in within 15 minutes of turning the machine on) around 8:00 am. And I slept really well and woke up feeling pretty decent at 12:30 pm.

At hubby's insistence, I've called the sleep doctor's office again. We'll meet with the PA again tomorrow. To talk with her about the insomnia again, I suppose. I don't really expect any help though. Hubby keeps thinking that the doctor's office will be able to "fix" the problems I'm having with the machine. I don't expect that anymore. I don't know what I expect. I fear that no-one can "fix" the problem and I want, I don't think I'll get: I want someone who is interested in listening and in troubleshooting and helping me address the issue and come up with a way of dealing with it.

I do know:

• My sleep doctor, whom I only me once between the diagnostic test and the titration test, told me, "You shouldn't have any problem adapting to CPAP. Most people adapt well in about two weeks." He did NOT give me enough information about what to expect and what to report if things were NOT going well. I am still angry about this.
  
  The BiPAP is much more comfortable for me in the sense of no more aerophagia and I don't want to go back to the S9 Auto.
  
  The System One BiPAP is much more noisy ResMed S9.
  
  The FX's exhaust flow is a serious design flaw that the Resmed literature advertises as a feature.

This bout of insomnia is now officially THE WORST case of insomnia I've had in my life. And it's most definitely adversely affecting my health as much as the apnea was. And affecting my relationship with my family and friends in ways the apnea never did.

And this insomnia monster is clearly trying its best to destroy all the good CPAP therapy is doing for my body: My sleep is as much or more disturbed by the current insomnia as it was by the untreated apnea. My daytime exhaustion and daytime sleepiness symptoms are far more severe and are likely due to extreme sleep deprivation caused by the insomnia that now exceeds the sleep deprivation that seemed to be present (based on my daytime symptoms) with the untreated apnea. It seems clear to me that until and unless my sleep doctor decides that the insomnia is in and of itself worthy of his attention, that I'm going to continue chasing my tail in "trying to make CPAP/BiPAP work for me" because in the strictest sense, BiPAP is working for me: Once I'm finally asleep, I can sleep with the machine for hours at a time. Once I'm asleep, the machine says my AHI is nice and low. Once I'm asleep with the machine, I can even get some decent quality sleep. It's just that I'm tired of having to go to war [with the insomnia monster] each and every night just to get to sleep.

On last note: I know I'm overly sensitive to uncomfortable physical stimuli and that's part---nay most, if not all---of my problem. I believe that many of my fellow migraineurs share this trait. Does anyone know ways to train your body to ignore unpleasant physical stimuli and not react to them?

[-SWS]

Some of our members highly recommend this book, robysue:
http://sleeptreatment.com/component/virtuemart/

This is by the same author---but not frequently discussed here:
http://sleeptreatment.com/sleep-books/insomnia-cures

You might see if anything here seems like appropriate reading:
http://www.hsperson.com/pages/store.htm

Another mental-focus/relaxation series is called "Mindfulness"---and here are a variety of printed and audio works by Dr. Kabat-Zinn:
http://www.amazon.com/s/ref=nb_sb_noss? ... kabat-zinn
(you can buy MP3 audio training for your MP3 player on Amazon!)

The above are all essentially cognitive behavioral therapy approaches. They are natural approaches versus pharmaceutical. So I would recommend trying any that seem suitable before attempting pharmaceutical sleep aids. I would love to hear recommendations and thoughts from others. Good luck!

[robysue]

Thanks for the links -SWS. I will follow up on them. I've got to tame this monster before defeats me. And at this point, it's got the upper hand in the war. A month ago, I felt like I'd finally had it on the run. But it found a way to outflank me when I wasn't looking around Thanksgiving. And a sleep deprived general just ain't no good.

[carbonman]

Does anyone know ways to train your body to ignore unpleasant physical stimuli and not react to them?

SWS has got it.

Sound sleep, sound mind
Barry Krakow

Sleep Dynamic Therapy
I have been practicing these techniques for a year.
I just started my 4th or 5th reading today.
They work.

Thought/feeling/image TFI balancing is the tool you need.
This is to calm that monster that takes over your mind
and will not let you relax. IMNSHO, it is the most important tool in the box.
There are others:
Close your day
SOLO technique to physically relax
Kill the clock

It requires work on your part. It does not happen over night.
You don't read the book and suddenly start sleeping better.
This is the mind/body connection that can not be denied.
You are the one that will fix this.
This is about you.

If you are willing to do the work,
and approach yourself w/courage and integrity,
you will slay the monster.

[robysue]

Does anyone know ways to train your body to ignore unpleasant physical stimuli and not react to them?

SWS has got it.

Sound mind, sound sleep
Barry Krakow

Sleep Dynamic Therapy
I have been practicing these techniques for a year.
I just started my 4th or 5th reading today.
They work.
<much deleted>
If you are willing to do the work,
and approach yourself w/courage and integrity,
you will slay the monster.

This sounds very much like the long term solution that I really desire: An easy answer is not what I am looking for because I do not believe an easy answer exists to my problems with insomnia nor my problems with being oversensitive to the various physical stimuli in general and the physical stimuli related to BiPAP therapy in particular. I am looking for solutions that teach me how to work on doing things that will positively address the problems I am facing and slowly but surely help regain control of my life bit by bit and piece by piece. In past bouts with the insomnia monster, I've been able to do this on my own. But this time I cannot figure out how to do it on my own; the insomnia monster has too many assorted allies aiding and abetting him in his cruel war on my sleep. I know I need a guide and a road map to show me how to accomplish this (very long term) goal of regaining my ability to once again sleep peacefully in my own bed the whole night through.

I won't kid myself: I am very likely to need some short term help in the form of I don't know what---including the possibility of trying a pharmaceutical crutch if need be. But hopefully by next December, I'll be where you are carbonman. Thank you for encouragement. It's much appreciated.

[carbonman]

I won't kid myself: I am very likely to need some short term help in the form of I don't know what

I would encourage you to seek out an accomplished CB therapist.
I spent 2+yrs in a CBT group w/a very talented therapist.
I made the journey to and through the gates of my personal hell.
I know what it means to "do the work".

Stand tall and turn into the wind.
It will be so worth it.

[Big S]

My heart truly goes out to you. I have just spent the last two hours reading your posts from the beginning and I see that the seeds of this problem have been germinating since night three! Since you're a Mathematics Professor I have to assume you are used to being right when most everyone else is wrong. I also have to assume that you haven't failed at many things, if any, because you take control of the situation. That's ok, but the thing that is so poopy about this is that the solution isn't written down somewhere but scattered around in little factoids and related experiences. There is no case in point for you. Like the rest of us, you are crafting your own therapy. I think one of the reasons you are so tired besides the lack of sleep is that you have been pounding this problem relentlessly for over three months now. You torture yourself in bed, and through the night, and you attack it all day long trying to grab it by the horns. You are amazing in this respect and I know you will end up being a poster child for this type of therapy. You may even end up teaching a class about it. The need is certainly there and you had amazing knowledge before you had your first machine. I have more observations but this post is getting long. I need to read more reference material but I'm only up to the first part of October. You are definitely in my prayers and I pray that you can settle your thoughts tonight.

[robysue]

Big S,

Thank you for your kind words and your prayers.

You are right when you say that you see "the seeds of this problem have been germinating since night three!" I remember writing the post you are talking about very clearly. It was the nadir of my experience so far. And, yes, I feel almost that low again.

And I strongly identify with your statement: "I think one of the reasons you are so tired besides the lack of sleep is that you have been pounding this problem relentlessly for over three months now. You torture yourself in bed, and through the night, and you attack it all day long trying to grab it by the horns." It has reminded me that I had to pound against the thesis many, many longer months than this therapy so far. But pounding against an unknown mathematical problem is the definition of fun for a mathematician, although it's a strange kind of fun that the rest of the world does not really understand. Still, there is something in common with being in hot pursuit of the proof of a theorem that continues to elude you and this therapy allied with the insomnia monster: They both take over your life and don't let you rest---it's the "attack it all day trying to grab it by the horns" part that they have in common. And I think that's something that I am going to have to learn: the need to consciously let go of it all at least for an extended period every single day. And that's going to be hard for the mathematician in me.

Again, thank you for your kind words and your prayers. It means much to me that you have taken the time to read my posts from the beginining. I am grateful.

[Big S]

And I think that's something that I am going to have to learn: the need to consciously let go of it all at least for an extended period every single day. And that's going to be hard for the mathematician in me.

Drain the batteries all the way down and then recharge them. Looking at Carbonman's pics reminds me of why I like riding so much. I used it to provide the singular focus needed to finish the day, clear my mind, and put me in a place where I could start the next day. For you of course, it's not the next day but the therapy that presents the problems. I think that if you can let go at all during the day it will be a good start.

[KimberlyM]

Robysue,

I suffer from migraines too and the sensitivity associated with that is why I think I also have a hard time adapting to this. Do you take any kind of migraine preventive? Many of them make you drowsy and are ideal to take about an hour before bed time. I currently take Singulair, which I was prescribed for nasal rhinitis but it also has had off-the-label use for migraine prevention. It has made me a little less "touchy" at bedtime and able to fall asleep easier. It looks to me that if you could address the sleep-onset problem, you might be on your way. Finding the correct mask is also difficult for migraine sufferers because of the heightened sensitivity in the head, neck and jaw region. So far the one I can handle the best is the HC407, but it still drives me crazy. The feature I like it that once it seals, you can loosen the straps some without losing the seal. A friend of mine uses the Zest, which is very similar. I just got the FX and agree with you that the air blowing is really annoying. I am working on trying to get a good seal with it, but it is leaky. I have read that "the mask is everything". If you can find just the right mask, it may make it tolerable. Utilize your DME and try on EVERYTHING. That is what I have been doing. I have been using CPAP for exactly one month and although I fall asleep quickly, I wake up repeatedly and struggle with the mask. I share your frustration with this whole process. The great thing about this forum is that we can all support each other.

[robysue]

Robysue,

I suffer from migraines too and the sensitivity associated with that is why I think I also have a hard time adapting to this. Do you take any kind of migraine preventive?

I've recently been put on a prophylactic prescription drug called topiramate to prevent migraines as a way trying to get on top of migraine associated vertigo attacks (my migraine headaches are actually quite mild fortunately and until the vertigo also started to interfere with the quality of my daily life, my migraines really required nothing but avoiding the worst of my triggers and lying down for about 30 minutes when a "bad" one hit). The side affects of topiramate are supposed to include drowsiness---to the point where they warn you about being careful about driving and during the ramp up to the full dose, you take the bigger dose at bedtime. Well, the topiramate hasn't helped me sleep but it hasn't made the insomnia any worse either. Just to cover all bases, however, I did speak to the neurologists office about whether insomnia could be a possible side effect---it was not listed on the long list of potential side effects on the patient information from the pharmacy (yes, I read it). The PA double checked for me and to the best of her knowlegde topiramate should not be causing or aggravating my insomnia. Drowsiness was mentioned (and noted as a possible useful side affect since I was already dealing with insomnia) by the neurologist who prescribed it. He also mentioned two or three really common side effects that he's worried about in a negative sense (so far so good) and two or three really super rare, but super serious side effects that really require immediate attention (also so far so good), all of which tend to occur during the first 2 or 3 weeks of use.

Finding the correct mask is also difficult for migraine sufferers because of the heightened sensitivity in the head, neck and jaw region. So far the one I can handle the best is the HC407, but it still drives me crazy. The feature I like it that once it seals, you can loosen the straps some without losing the seal. A friend of mine uses the Zest, which is very similar.

Don't think I can handle a nasal mask. I certainly couldn't at my titration study. Sneezed my head off just trying to get the mask part close to my nose---even before the tech tried to put the straps around my head. The tech gave up before the nasal mask was ever even properly fitted because it was clear I'd be ripping it off every 5 minutes because of sneezing and or itching. The nasal pillows mask she switched me too was "tolerable" because I could scratch the top of my nose and I didn't sneeze uncontrollably.

I just got the FX and agree with you that the air blowing is really annoying. I am working on trying to get a good seal with it, but it is leaky. I have read that "the mask is everything". If you can find just the right mask, it may make it tolerable.

I'd describe the FX as "tolerable" in the sense that I don't mind the mask on my face. I get a very, very good seal with it (unlike many). It's only the exhaust flow. My problem with other masks that I've tried is that they fail at step 1 instead of step 3: I can't stand them on my face. The FX fails at step 3: I can't stand the exhaust flow at night when I'm trying to fall asleep. Once I'm asleep, I'm fine until morning.
It's only that awkward "get to sleep" phase. I've even looked at how and where other masks vent. It's a common flaw actually: In an effort to address bed partner complaints ("My spouse's mask is blowing on ME"), many of the the tiny holes in the exhaust vents now are angled DOWN instead of OUT. This makes the exhaust flow NOT blow on the bed partner---as the mask companies so proudly claim in their advertising. But if you don't run the hose over your head (and I absolutely cannot STAND having the hose on top of my head), then that exhaust flow blows right down the user's own chest. Or hands---if you use them to protect yourself.

Utilize your DME and try on EVERYTHING. That is what I have been doing. I have been using CPAP for exactly one month and although I fall asleep quickly, I wake up repeatedly and struggle with the mask. I share your frustration with this whole process. The great thing about this forum is that we can all support each other.

I wish you the best of luck and I sincerely hope that your battle does NOT last as long as mine has.

[avi123]

Robysue,

I suffer from migraines too and the sensitivity associated with that is why I think I also have a hard time adapting to this. Do you take any kind of migraine preventive?

I've recently been put on a prophylactic prescription drug called topiramate to prevent migraines as a way trying to get on top of migraine associated vertigo attacks (my migraine headaches are actually quite mild fortunately and until the vertigo also started to interfere with the quality of my daily life,as mine has.

I would try taking another Rx instead of the Topiramate and see if it makes a difference.

Excerpt from the following link:

(Contra indication)

any disease that affects your breathing such as asthma or chronic obstructive pulmonary disease (COPD)

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000998

[robysue]

Robysue,

I suffer from migraines too and the sensitivity associated with that is why I think I also have a hard time adapting to this. Do you take any kind of migraine preventive?

I've recently been put on a prophylactic prescription drug called topiramate to prevent migraines as a way trying to get on top of migraine associated vertigo attacks (my migraine headaches are actually quite mild fortunately and until the vertigo also started to interfere with the quality of my daily life,as mine has.

I would try taking another Rx instead of the Topiramate and see if it makes a difference.

Excerpt from the following link:

(Contra indication)

any disease that affects your breathing such as asthma or chronic obstructive pulmonary disease (COPD)
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000998

The neurologist was told by me at the time of the visit that I had OSA and was on a CPAP and we even talked about it and he wrote down notes about it while we were speaking. And his group practice is one of the area's sleep medicine centers, although not the one my sleep doctor is associated with. And there was even one of those large ResMed or Resprionics OSA posters in the examining room as I recall. So I don't think this neurologist would be blithely unaware of the need to consider my OSA while treating my migraine related vertigo.

And I read the link included above the day that I started the topirimate some three weeks ago. And yes, I know OSA is a breathing disorder in the sense that the upper airway collapses; but it does not involve the lungs themselves. Asthma and COPD do. And in reading about the pros and cons of many of the other prophylactic migraine drugs, the potential benefits with topirimate and the overall track record of its being reasonably well tolerated currently outweigh the potential risks and make it worth a trial run with careful monitoring at this point.

So I have been monitoring AHI (of course) and there's been no change in that. I have been making sure that all doctors are aware of what's going on. And I do plan on mentioning the topiramate to the sleep doctor's PA today in any case anyway.

[brazospearl]

robysue, I'm sorry you're having such difficulty with insomnia. Wish I had a magic wand for you! Insomnia's never been a real problem for me, but I have had migraines for years. At one point I would have about 3 of them a week, and they'd last at least 24 hours. Then, in the early 1990's an opthamologist told me he'd heard that some people had seen success in controlling migraines by taking an aspirin a day. This simple treatment took me from 3 or so headaches a week to just a couple of them a year. The few I have now are usually brought on by eating/drinking/smelling things that trigger them. Don't know if you've ever tried this, but it might be worth a shot.

[robysue]

brazospearl,

Are those regular aspirins or baby aspirins?

I have to ask because I had a very nasty case of rebound headaches almost 16 years ago in the aftermath triggered by the stress caused by my husband's serious head-on car crash some 16 years ago next week. The rebound headaches started out as near daily tension and migraine headaches caused by the stress of dealing with the fact that my husband went off to work one day and didn't come back for three months. And I had two small children at the time. So I was taking OTC pain killers---both aspirin and ibuprophen to deal with the headaches and wound up with the rebound headaches. Took a good solid two months of work to get the rebound headaches under control and the aftermath was I was told that I would need to be very, very careful about taking OTC pain killers for either tension or migraine headache pain in the future. As a result, I've been extremely reluctant to take them. And even when my arthritis acts up, I get very concerned if I have to take aspirin or ibuprophen for more than a few days at a time. [And I don't often take more than one dose a day for pain either, unless the arithitis is really acting up.

Right now, my migraine problem is largely NOT headaches. It's that the migraining is manifesting itself as vertigo---which is essentially painless, but highly disorienting and creates its own problems with functioning because of the dizziness. The idea behind the topirimate is that it should prevent the migraining from manifesting itself as vertigo.