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

[brazospearl]

I started off with regular aspirin, but now I take baby aspirin. While I've rarely had problems with migraine vertigo, I was prone to severe visual disturbances, especially multi-colored floaters. They aren't a problem since I started the aspirin. Your situation is different, of course, and I completely understand not wanting to take ANY medication you don't have to. It's always a balance of possible benefit/possible problem, isn't it? I was just trying to show you another option to consider while trying to deal with your complicated situation. Good luck!

[Kiralynx]

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' suggestion of MINDFULNESS is spot-on. I used the CDs two-point-five years ago, after my cancer diagnosis. This was before my apnea diagnosis. I can't begin to describe the insomnia and frustration of screaming, over and over "How can my body betray me like this?!" with regards to the cancer. Kabat-Zinn's stuff helped me calm down, helped me cope with the diagnosis, with the preparation for surgery, with the recovery from surgery, and then, just as I was getting better, the apnea diagnosis.

One thing I did was place my Bipap ASV in a drawer below the side of the bed so the noise is muffled.

I wouldn't like the air blowing from something like the FX, either -- one reason I found the Comfortlite 2 and the Headrest so worthwhile. The Headrest exhausts UP. The only one who objects to that is my dachshund, Shadow, when he drapes himself across the top of my pillow and I squirt air in his ears. Those two masks help me, also, in that I hate -- absolutely HATE -- having straps across my cheeks. (I couldn't have music in the room, either -- it would irritate the blazes out of me.)

I did a bunch of "counting breaths" in my first weeks. I would get hooked up, lie down, and turn off the light, and start counting. By hundreds. If I lost track, usually because I'd dozed off, I started over. And over, and over. Gradually, I was counting less and less before I dropped off, and it took less to go back to sleep. Now I don't need it at all.

[MoonBear]

Dear Robysue,

I have had severe insomnia for more than ten years.

I have used and not used meds. I have listened to sleep tapes and done deep breathing.

The thing I was MOST worried about when I got my apnea diagnosis was how the mask would aggravate the savage insomnia. And I also get migraines.

I realized that it was counter-intuitive to attach something to my face to breathe. I mean, we are not born like the Borg with weird tubes coming out of our faces.

I began by creating a positive association with the mask. I wonder if you have ever snorkeled and if you enjoyed it? I use a Quattro, and it is tight like a snorkel mask. I figured if a tight mask could be pleasurable, and you have to regulate your breathing when you snorkel, too, then it could be seen as a positive tool even though it is not inherently comfortable.

When I put on the mask I realize that acceptance in entirely a choice. I can surrender to the treatment or fight it. It's not easy to surrendered for me, but I consciously visualize the beautiful dolphins I swam with when I had on the snorkel mask. In the ocean, I could wear that uncomfortable contraption for six hours to swim with dolphins. Nightly, I try to don the mask with gratitude so I can actually breathe all night. I also, feel the warm, turquoise water. See a pod of dolphins. and on it goes.

Mostly, this works. Having said that, I have done a lot of different spiritual work. Controlling breath seems very important. I also have to be very careful about what I consume at night. I had a Coke last night and ice cream. They wired me, and so when I went to bed, I was not in a great head space. the mask was heavy and tight. I was not able to relax into it. Other nights, I have slid right into sleep.

I was different on these nights, not the mask. On nights when it seems like there isn't enough air, I slow my breathing
down and count the breaths in and out. My body finally realizes that there is plenty of air.

I would recommend theJon Kabbat-Zinn (or is the spelling Zin?) book "Full Catastrophw Living." This was a landmark book, and if you follow the program by doing the Body-Scan, you begin to learn how to relax with things as they are.

I know the fear of insomnia that lurks under my skin. I may be fine, but insomnia is insidious and can rise for physical, emotional or mental reasons. Trying to get all three to quiet and calm enough for the surrender of sleep with a mask on your face is far from easy. And I say that even though I have not had nearly as much difficulty adapting to cpap as you.

One thing: seems to me that we can choose what discomfort we want. The weight and tightness of the Quattro has been preferable to nasal challenges as well as taping so far. tTonight I try the Swift Fx and taping to see if I can stand it. Seems like breathing out will be a challenge, but who knows?

One thing I do know is that this a very complex process. I mean emotionally. For my first week, I slept and was euphoric. Then, my husband was sick for a week before the holidays and I pushed myself much harder than I should have and exhausted myself. My holidays were stressful rather than enjoyable because of relatives (not my wondeful husband) who were determined to be miserable.

Underneath the stress, the euphoria, the nose and skin abbraisons, all of this busyness is a sadness that I have to deal with this. And anger that, in an age when we can walk in space, we can't figure out a comfortable way to deal with this. And huge relief that I know what is wrong -- finally. Regret that I didn't get this diagnosed ten years ago. And on it goes.

Putting on the mask every night means also dealing with all of this -- consciously or unconsciously. it is no accident that when I feel' more empowered and happy that the therapy is easier. Personally, I will be losing a lot of weight and following the success of the Pilar procedure with great interest even as I impatiently wait for the new Quattro. I do not want to say "no" to anything that can help me live my best life. Cpap may be the end of' my process or only part of it.

Please, pick up the book Robysue. And the CD that goes with it. Do the CD every day and see if it helps. It has helped me and so many.

Sending Bear Hugs,
MoonBear

[carbonman]

When I put on the mask I realize that acceptance in entirely a choice. I can surrender to the treatment or fight it. It's not easy to surrendered for me, but I consciously visualize the beautiful dolphins I swam with when I had on the snorkel mask. In the ocean, I could wear that uncomfortable contraption for six hours to swim with dolphins. Nightly, I try to don the mask with gratitude so I can actually breathe all night. I also, feel the warm, turquoise water. See a pod of dolphins. and on it goes.
MoonBear

MoonBear, did you realize that this is the exact practice of TFI balancing?
You have incorporated your thoughts, feelings and images into your replacement behavior.
It is an example of using cognitive behavior to replace a dysfunctional behavior
with an acceptable alternative.

[BlackSpinner]

Sue - did you investigate the autogenics therapy I suggested in your migraine thread? It is also used for insomnia, anxiety and stress related issues.

You can not fight this head on. Just like you can't get back on a horse by "conquering" your fears - it knows what you are really feeling and does what it bloody well wants. This is the same thing. It is about letting go, not about taking control.

[Muse-Inc]

Several things came to mind while reading this thread..none of these may apply to your situation but I pass 'em along just in case. RobySue you have my sympathy...it's a challenge for some getting this therapy to work well and you are clearly challenged.

Migraines: mine ended when I started taking 600 mgs of magnesium citrate a day in divided doses. I started because I was having palpitations, every few mins then lasting 5-10 mins; a side effect was the end of my all too frequent migraines requiring a knockout shot (i'd be out for 12-14 hrs) a few wks after I started, they haven't returned in the 10 yrs since. I have had the aura maybe 6 times since which a single can of Diet Coke aborted before the pain began. Cafergot (egotamine I think) worked well for me until the pain got too bad, at one pt I remember a neurologist saying my systolic was 225...yikes! My mom still occasionally gets ocular migraines and uses the can of Diet Coke and a few days of mag citrate to change her biochemical tendency toward migraine. Think my maternal grandmother also had migraines; she passed early on so it's just a guess.

Vertigo: I get it and dizzy whenever I become even slightly dehydrated, so I make an effort to stay hydrated, even keeping a 25 oz bottle of water at my bedside.

Falling asleep issues: I call it the sleep dreads and like others have posted use sleep entrainment tapes; when it's really bad, I just get up and read (something pretty boring) for awhile. This is one that typically does not yield by exercise of rational thought, it really is a behavioral thing that requires a different approach. Reframing the insomnia, equipment issues, etc. seems to change the stubborn resistant defiant inner 2 yr having a tantrum that is often at the root of this behavior...only you can assess what's at the root of your situation...that is after you address all the obvious issue like being too wired to sleep, too much electronic blue light close to bedtime, poor sleep hygiene, etc. I found using the emWave trainer from the Heartmath Institute helps distract me when I can't break the sleep dread cycle (seems to run in cycles for me). Just a thought, are you at the age when perimenopause or menopause sleep issues arise? If so, you might investigate using topical progesterone cream, it's bioidentical and just happens to also provide some protection against the damages of oxygen desaturations. It also helps with the migraines that many women experience with flucuations in the 3 major estrogens that occur as we age.

Mask: maybe one of the hybrid-style masks (Hybrid Universal or Liberty) might be more comfortable. Now that I've been forced to sleep on my back, I make sure I have some covers up to my neck so the exhaust will not be a breeze on my chest; when I sleep on the one side I am able to sleep on, I make sure my arm is covered and the other hand grasping part of the covers so it too is covered...then, I only have to make sure the pillowcase is not in the pathway of the exhaust. When my APAP increases to max or close to it, the sound of the exhaust sometimes wakes me up . Like others here, I am hypersensitive to physical stimulii, when stressed that increases dramatically. It sounds like you might have that same hypersensitivity...makes it more challenging to acclimate to sleeping with equipment.

I wish you good sleep and easy resolutions to your challenges.

[robysue]

There have been too many kind suggestions for me to give detailed and personal responses to this late at night.

Rest assured, I have read each and every one of them. Many of them are things I have already thought about, some I already do, and others I hope to soon put in practice. A few I'm not sure of, but may prove useful in what I know will be a long and difficult struggle.

I thank you all.

Although I came away from my meeting with the PA very angry this afternoon, her suggestions are not unreasonable. They start with reinforcing basic sleep hygiene practices, which while I'm rather decent at, I am not yet rigid about. And "rigid" is really the wrong word, but I can't think of the right one right now. But at any rate, I think she's onto something when she says she wants me to start enforcing WAKE UP time based on when I must be up and out of bed once my semester starts. So starting tomorrow morning, I must get out of bed by 7:30 no matter how much it kills me. And no naps (of course). But stay up as late as I need to to get sleepy. And get out of bed if I can't get to sleep in 30 minutes. Or if I start having bad thoughts. Or I wake up and can't get back to sleep. .... And keep a sleep log..

And all of this will fit in well and provide a solid base for many of the suggestions provided by you, my many ethernet friends and companions.

Again, thank you all for your support, your ideas, your thoughts, and prayers. I will keep you posted in the days and weeks to come.

I hope to get to a book store tomorrow to buy some of the many books that have been suggested to me. I believe there is much food for thought and many potential strategities for me to pursue.

But one starts now: I need to close the laptop and do something relaxing and sleep provoking so that I can face my bed with something less than dred tonight. And to get up tomorrow morning and drag myself through the day.

[MoonBear]

Hi,

Just wanted to mention that the EmWave is a very useful tool, and you can find it by googling the company Heart Math. Read a little bit about entrainment, and see what you think.

Am asking all sleep spirits to sweep you up and give you the deep rest you deserve. With love and

Bear Hugs,
MoonBear

[kteague]

Robysue, I feel for you with the insomnia issues. At times when I've gotten way off schedule with the insomnia keeping me up late then sleeping too late, I've had to go thru a couple days of sleep deprivation and of getting up early and no naps in order to be able to get back on track. Although most nights I fall asleep right away, out of the blue I'll have one of those frustrating sleepless nights. When it happens I try not to pressure myself, and accept it as a night of rest. If I get frustrated, there will be no rest, and if I can't sleep, at least I need the rest. That's easy for me to say, because I have no obligations facing me in the mornings, and there's always expectation of afternoon naps in the recliner. I plan to buy Krakow's book when my money allows (library doesn't have it) and learn some techniques that may work better for me. Sure hope you find what works for you.

[BlackSpinner]

I think she's onto something when she says she wants me to start enforcing WAKE UP time based on when I must be up and out of bed once my semester starts.

Yes very important. I find when I don't do that it is impossible to go to sleep. Even sleeping in one hour affects my bed time. I am not working but I am up between 7:30 & 8 every morning. A dog that needs walking helps. Not stepping into a puddle is a good motivator to get up.

[Big S]

It's going to be 55 degrees in Dayton today. Summer has finally arrived!

[SoooTired]

I must admit that I didn't thoroughly read all the previous posts, although I read yours and I feel for you.

I have no sage advice; my migraines pretty much stopped when menopause started, but as for Insomnia, I could write a book. I've suffered from it my entire life. One of the good things about the fact that I suffer from chronic pain is that my pain meds have made it easier for me to go to sleep. I was doing pretty well and sleeping well, I thought. Then my Sleep Apnea started and I spent months in denial before finally going for a sleep study, etc. Finding a mask to fit me was very traumatic and took months, due to my tiny, yet lovely face. By that time, I had developed a true sleep phobia.

When it was time to go to bed, I would become wide awake and tell my husband I'd be in once I felt sleepy. I really believed that I wasn't sleepy for a few months until I realized I was suffering from anxiety. I had no true anxiety attacks; I was just afraid to go to bed and use that bloody mask. I called my Primary care physician, with whom I have a great relationship, and asked him if he thought an anti-anxiety drug at bedtime would work. He actually wrote me a script for Xanax 0.25 mg three times a day, with meals but I didn't think I needed that much. I started taking it at 10PM, when I take my last muscle relaxant and before I take my night pills between 11PM and 11:30 PM. It actually worked! Not every night but often enough that it gave me great hope. If I had a day when I thought I was going to have a hard time sleeping, I'd take one at dinner and then take one at 11PM and it helped a great deal.

That's not to say that I don't have nights that the mask doesn't end up on the floor, next to the machine, which I fortunately turn off, but I'd say I use the machine and mask about ninety per cent of the time. Sometimes things like the air blowing directly into my eyes, which obviously are supposed to be closed and aren't, will drive me crazy and though I adjust and re-adjust the stupid mask won't set the proper way and I think, I need some sleep of some quality so off comes the mask. Or my husband is snoring his head off and I reawaken myself to the point that I just can't get back to sleep with the mask. Or my sinuses, or something, are making the left side of my face swollenand I can't untighten the mask sufficiently. All those things happen to me at times but not that often.

I have Rheumatoid and Osteoarthritis so I don't care if I have to depend on a little white pill (or a yellow one would make it Mother's Little Helper!) to go to sleep with my mask on. Medication is necessary for me to live a somewhat painfree life so if that added med helps me to get over that fear of going to bed, I'll gladly take it for the rest of my life. Maybe something similar will help you. Good Luck!

[robysue]

Another day (or rather another night); another update.

Last night was a real disaster. And it really and truly should not have been. Still don't quite understand what exactly happened that turned everything so sour.

I did not get sleepy until 3:20 AM in spite of having no naps. I went to bed and spent some 10 minutes or so fussing with the humidity, the hose, the nasal pillows, the bed pillows, and the bed covers. And got everything all nice and comfortable. And then realized the I'd left my night guard in the bathroom because my jaw was starting to hurt and the pressure was trying to force my lips apart. Without my nightguard, I try extra hard NOT to grind my teeth and keep them them just a teeny-tiny bit apart, which lets the air seep into the mouth, with starts the chipmunk cheek thing going, which makes my hypersensitive self wake up, which ..... You get the picture. So I turn every thing off, and go to the bathroom to locate the nightguard, get a drink, and take a pee while I'm there, and start to shiver because the house is cold. I hate getting out of bed once I'm warm and comfortable.

I get back to bed and start the process over again. It's another 10 minutes of fussing with the humidity, the hose, the nasal pillows, the bed pillows, the bed covers. In the time I went to the bathroom, my husband's changed position in the bed and the way I had everything arranged doesn't quite work any more. And the cat's moved in and is now ON my pillow. And by the time I finally settle down and start working on getting to sleep, about 15 or 20 more minutes have gone by and I'm now more awake than sleepy. And the PA has been insistent that part of the sleep hygiene is that if I'm not sleepy, I'm not supposed to be in bed. ["Don't lie in bed for more than what you think is 30 minutes and DON'T watch a clock---guess the time in your head."] And if I get mad at the CPAP (or the cat) I'm supposed to leave the room to settle myself down and come back to bed only after I'm not mad and I am sleepy. I decide to snuggle my head to get more comfortable to give going to sleep one more shot before getting up, but it triggers the RARE MASSIVE LEAK and I lose it. Hubby enforces the PA's rule about leaving the bedroom.

It's close to 5:00 AM before I settle down enough to put the mask back on and get some sleep. Hubby doesn't stricly enforce the WAKE UP time of 7:30 that I, he, and the PA agreed to. (7:30 is early enough for my spring semester since I've got a late schedule.) Hubby did strictly enforce a 9:00 WAKE UP telling me: "You've made compliance for the insurance company and that's as far as I'm bending the PA's WAKE UP rules". [Because I've been switched to a BiPAP, I've got to do the compliance stuff all over again from square one. And fight the insomnia monster. The PA says that the sleep hygiene rules take priority over compliance and that if I come up short, the sleep doctor will send a letter of to the insurance company saying explaining that I've used the BiPAP 100% of the time I've been asleep, but that due to the insomnia treatment I've been asleep less than 4 hours per day for less than 70% of the required days during the 30 day period .... blah blah blah ....]

Hubby and I also did get to the book store today. I picked up Sound Sleep, Sound Mind and The Highly Sensitive Person. These seemed like reasonable starting places among the many, many interesting and useful links that have been posted on this thread. Reasonable in the sense that they are not overwhelmingly new or different in their basic philosophy from my own, but still have plenty to offer. The Highly Sensitive Person promises to be an interesting read that will help me finally understand why I have always reacted to physical stimuli the way I have throughout my 52 years. We also filled the prescription for generic Ambien as well. The PA and I have worked out the following plan since I'm still very, very resistant to the idea of drugs:

• If I sleep well enough with or without Ambien to function during the day, then I won't take Ambien the following night.
  If I have a disastrous night that leaves it difficult to function during the day, then I will take Ambien the following night.

If the Ambien works as planed, I should not have two disastrous nights in a row. And I should not need to take Ambien every single night either.

I have been a good girl and avoided all caffeine since morning cup of coffee, which was before 10:00AM (PA has backed the cutoff time for caffeine from noon to 10AM). I've also avoided all naps (not new, I knew to do this). Still fighting the cold. Didn't get enough exercise today---it's rainy and cold and with my head cold I'm feeling pretty bad.

We will see how the Ambien works tonight when I take it around my PA-imposed bedtime of 1:30 AM. (She wants me to limit in-bed time to 6 hours until I'm falling asleep within 30 minutes of going to bed at 1:30AM, sleeping soundly through the night for 6 hours straight, and getting up consistently at 7:30 AM before I start trying to go to bed any earlier than 1:30AM.)

[tschultz]

Sue - did you investigate the autogenics therapy I suggested in your migraine thread? It is also used for insomnia, anxiety and stress related issues.

Can you please provide me with some more information on the autogenics therapy? After seeing your post I did some research on the web and mentioned it to my wife and she would very much like to look into this further. She said that is exactly the kind of thing that she has been looking for to help her cope with things. Any details on how or where to start, books, etc. would be appreciated.

Feel free to PM me, or perhaps add a new topic as this may be of interest to others as well.

Thanks.

[BlackSpinner]

Can you please provide me with some more information on the autogenics therapy? After seeing your post I did some research on the web and mentioned it to my wife and she would very much like to look into this further. She said that is exactly the kind of thing that she has been looking for to help her cope with things. Any details on how or where to start, books, etc. would be appreciated.

I and my sister learned it back in the '80's from her psychiatrist who had trained in Europe. It is a relaxation technique that at that time was used by many European and Eastern European Olympic athletes. The basic technique is one minute relaxations done many times a day. It is the in and out of trance that changes the blood flow that helps with the migraines.

The most effective way to learn it is to find an accredited therapist. By having to report in weekly you are more likely to do the practice. At first you need to do it at least 30 times a day to train your body / mind. That sounds like a lot but it is basically 30 minutes scattered throughout the day. Some therapists add biofeedback to it to train you faster. That is what the NASA style training does. But you don't really need it.
Most people I know who have tried to learn it without a "coach" usually give up quickly so I strongly suggest using a therapist to keep you on track.

There are good self help training on the internet. The only issue I have with them is that they don't do the "closing" which my teacher felt was extremely important. After each one minute segment, take a deep breath, clench your fists and bring them to your shoulders. This is your cue that you are out of the trance and back to the here and now. After practising the autogenics routines for a few weeks you will drop deep into trance very quickly but you must learn to get out of it quickly too, if you don't you end up in a daze and it is not as effective for migraines and other blood flow related issues.

http://www.guidetopsychology.com/autogen.htm
is a good example of the training routine.

The only counter indication is problems like epilepsy. If you have seizures of any kind first check with your doctor or study it with a very qualified person.

I used the training to make it most of the way through the labour of my youngest - every time I went into contractions, if they were listening to my pulse they would panic because they lost my pulse, my companion would reassure them. I think if I hadn't had the medication to induce labour I would have made all the way through.