The Good, the Bad, and the Ugly---one year later

Mary Z wrote:robysue, thanks for your post. I'm impressed at the efforts you have gone to so therapy will be optimal for you. In particular the changes you are willing to make about coffee, drinking, and adherance to good sleep hygiene are admirable.

Well, I don't know that they are admirable. But from my point of view, they are necessary if I want this thing to do its magic. I figure that you have to do what you have to do to make this thing work. And those are what I have to do. Doesn't make me happy about them. But I know in time, it will become second nature---except for missing that unsweetened ice tea at lunch. I don't think I'll ever fully move beyond that.

Now if only decaffeinated ice tea was as readily available as decaffeinated coffee is ...

JohnBFisher,

Thank you both for your kind words about my participation here at cpaptalk. It's nice to know that others do appreciate the help I try to give those poor inductees into the CPAP&Insomnia club as well as my desire to explain the basic math about all the numbers that get thrown our way when we first start looking at our sleep tests and our data.

I also want to thank you for the words of hope: Not only in your post to this thread, but in numerous other threads, and not only in response to my posts, but in response to many others in need of a kind, hopeful word or two. There have been many times when things have not been going well and you've managed to say something that helps redirect my frustrations towards the larger picture and the sure knowledge that this too will pass----whatever the "this" at the moment that is troubling happens to be.

You write:

As I've explained to my children, my wife and I each married our best friend. The romance comes and goes over time. But our friendship remains an eternal constant.

Truer words could not be spoken about the relationship between my dear hubby and myself: We were best friends for several years before we even thought about dating each other. And we've remained each other's best friend in all of our 27 years of marriage. And we've always had, and always will have, that deep, Midwestern friendship to fall back on throughout all the less than glorious periods in our marriage.

Finally, I am sorry to hear about your daughter's recent OSA diagnosis. But at least she has your kindness, love, and strength to make sure that she doesn't fall through the cracks as so many newbies do.

robysue wrote:

deltadave wrote: Try boffing the guy at 9:30.

Unless there's some local statute prohibiting that.

Two Muslim host daughters still awake and doing homework does make this a bit, shall we say, difficult.

OK, what's 10:00 look like?

"IMHO" if sleep problems are still an issue, especially insomnia and DSPS, then this an area that should be explored.

robysue wrote:But I do feel very guilty about this issue.

suggests a situation contrary to basic Sleep CBT, namely, equate bed with "good things". Just "do it" and get that variable off the table.

robysue wrote:I know that xPAP is supposed to help, but it's killed what little sex drive I had.

You know, when I hear that...

Whatever.

robysue wrote:And I always fall asleep hard right afterwards...

Well then there's your solution. Don't even need a prescription.

http://www.entelechyjournal.com/pulling ... r_sex1.htm

It strikes me that you've got an endless loop there, and need to break it somewhere.

As an aside, Marin et al out of Brazil is looking at sex and dopamine in RLS. Now, there were a few PLMs on NPSG, and PLMs and RLS are frequent bed partners, so to speak.

Maybe some sub-clinical RLS. Let's do some ***-wingin' (need to think about what to call this).

Roby Sue, thanks for your updates and your sharing. I always know that you will offer something of major substance on whatever issue you post about. I think that your posts really help to make this forum the best thing going to help people deal with the difficulty of xpap adjustments etc.

robysue, Thanks for posting your one year update. You have provided so many positive and encouraging comments to others on this forum I had no idea you were having such a struggle yourself. Your tenacity is encouragement to all.

As for being able to forgive, you are responding quite normally. You know what is so unlikable about granting forgiveness to another? You relinquish your "right" to exercise revenge, retribution, or whatever you want to call it, against the other person. No human likes giving up a right of any kind. But also, in a sense it places you in a position of superiority over the other person, because you have given them something they are powerless to demand from you and yet powerless to reject. We don't like to place ourselves in a superior position when that superior position has no authority tied to it. Forgiveness is enshrined in justice, and justice does not equate to fairness. We prefer to operate on the principle of fairness. So, when you find yourself truly in the position of being able to forgive all those you feel have wronged you, you will do so because it is just, not because it is fair. That's why forgiving can be so hard to do, and why it's so cleansing to the soul and spirit when you do do it.

GBU-
As a person wiht four years experience with Deplin, I have two very important questions for you about Deplin. The first question, when the PA prescribed Deplin, what was the explanation on how it would aid in sleep? Did they mention how Deplin would help by "calming" a person down? My thinking is that because Deplin aids in balancing the three neurotransmitters essential to balanced well being (see Deplin website about how deplin may help in motivation, initiative, alertness, concentration, mood, and sociability in as little as a month) may be why you feel a difference. My second question would be how does Deplin impact the migraines and they explained the benefits of more monamines. I am very happy that Deplin is helping you and i hope you continue to make great progress. Please let me know if you would have any questions for me, hoping I can help you in any way. Always visit the Deplin website for more great information.

The good sounds good.

The bad sounds like a major lifestyle "adjustment." That is not totally bad, but just different.

That brings us to the ugly.

I am sorry but it sounds like you have lost your imagination.

When you are feeling "frisky," simply tear your mask off of your face and toss it on the floor. The "whoosh" you hear, with a little imagination, should remind you of staying in a cabin near Niagra Falls. That sounds reasonably romantic... doesn't it?

You could also imagine that you are camping out by a rushing stream...

If the "mood" strikes you in the middle of the night just imagine that your husband is on a space station and you are wearing your mask as part of your flight gear on your way to meet up with him. Throw the mask on the floor and realize the hiss from the mask is just the life support system on the space station.

Afterward, simply cuddle up and cling to one another "in the moment." Don't worry, if you happen to dose off. The positive energy produced by intimacy will far outweigh any negative energy from suffering through a few apneas. You probably won't dose off for long, and when you wake you can simply put your mask back on and drift off to a restful sleep.

If you want to get a little "kinky," you can tie your husband up with your hose, or have him tie you up... OK, no need to expand on this.

The point is that you have this wonderful machine that is helping with your health. It can also help bring you and your husband closer, if you use a generous amount of imagination in a playful way.

You may also find that your anger fades away as you find ways to work around the fact that you need this machine for your health.

OK, rake me over the coals now... I just thought that you may enjoy another perspective.

P.S. Did you know that if you put the end of your hose, with the machine running, into a bucket of water, it almost sounds like some of the sounds you experience while diving...

Also, you can make some "funny noises" if you put your hand or skin across the hose. With some practice you may even be able to play a tune on your husband... or yourself.

deltadave wrote: It strikes me that you've got an endless loop there, and need to break it somewhere.

In a word: Yes. There's an endless loop and I need to break it. Working on breaking it as best I can.

HoseCrusher wrote: I am sorry but it sounds like you have lost your imagination.

When you are feeling "frisky," simply tear your mask off of your face and toss it on the floor.

In a word: Yes. I've lost my imagination.

As for "When I'm feeling 'frisky'"---it has been so long since I've felt frisky. And that's a significant part of my problem: I simply don't feel "frisky" at all any more. I didn't have much of a sex drive in the last couple of year's prior to the diagnosis---likely an unrecognized symptom of OSA---but I've got no sex drive at all now---as in none, nada, zilch. Is it mental? Perhaps, maybe even "Most likely". But even so, I feel nothing much physically---even when I do the deed with hubby.

Pre-CPAP I'd regularly have sexy dreams---and waking up after a sexy dream is indeed a good time to do the deed .

Now? Since being on CPAP, I think I've woken up twice from a sexy dream. And one of them was when hubby was on an out-of-town trip.

HoseCrusher wrote:The good sounds good.

Yes. I'm now (finally) at a point where the good is indeed very good. And also to the point where I want more of the good. It's taken me a much longer than normal time and a much more difficult adjustment period than normal to reach this point where I can not only theoretically "see" the positive difference that properly adjusted xPAP therapy can make, but feel it on a regular enough basis to emotionally and physically want to make it work all the time instead of merely part of the time. And that's a MAJOR accomplishment!

The bad sounds like a major lifestyle "adjustment." That is not totally bad, but just different.

I agree in theory. But it's still too close emotionally to me. Will I get there in time? Yes. But accepting major lifestyle adjustments that are imposed from outside rather than coming from inside is not an easy thing to do either emotionally or physically. And for now there's still real grieving going on for what once upon a time was.

deltadave wrote:Try boffing the guy at 9:30.

Unless there's some local statute prohibiting that.

This is exactly what DH and I do - and have done for some time as he works 2nd shift and goes to bed much later than I.

Sometimes he'll arrive home when I'm in the shower and he'll be waiting in the bedroom with candles lit.

Works great for us - I'm not too far into wind-down to sleep mode when he gets home. Our "not-waiting-until-we-get-into-bed" has gone back to making our love life more spontaneous IMHO.

I decided right from the get go that I wasn't going to let the 'contraption' get in the way of intimacy and so far it hasn't.

Hang in there robysue - you're doing great - and have given me soooo much great info.

Cheers,
xena

Sleep disorders rob people of their health in a variety of ways. At the beginning, they sap away your endurance and zest for life, then as things progress they start effecting your health.

You have taken steps to overcome this, and I am confident that you can also take steps to rekindle your imagination and awe.

Here is a starting suggestion...

Each morning when you wake up, ask yourself what you can do today to rekindle your imagination.

Each evening when you are about ready to go to sleep, check up on yourself and ask what have you done today to rekindle your imagination.

This morning and evening questioning will program your mind to become aware of the everyday opportunities that are available to you to improve your state of mind.

Congratulations, Robysue, on sticking with it for a year and for your progress. You have tackled your overall health situation with an inspiring single-mindedness of purpose.

Re: Sex life: I don't know about you, but even though I am not Jewish, these days off are my High Holy Days. Does your college get the Jewish Holidays off too? If so, how about spending a whole day just having fun together, without running errands, doing chores, or working? Then, if inspired, do it in a room where Kaa can't watch, and afterward have your husband plunk you into bed for your post-coital nap?

Re: Forgiveness: Have you ever read Loving What Is by Bryron Katie and done "The Work"? It changed everything for me.

"Forgiveness is giving up the idea that the past could have been different." —Desmond Tutu

I can only imagine that you'll be in an even more amazing place one year from now!

davidrpharmboy wrote:GBU-
As a person wiht four years experience with Deplin, I have two very important questions for you about Deplin. The first question, when the PA prescribed Deplin, what was the explanation on how it would aid in sleep? Did they mention how Deplin would help by "calming" a person down? My thinking is that because Deplin aids in balancing the three neurotransmitters essential to balanced well being (see Deplin website about how deplin may help in motivation, initiative, alertness, concentration, mood, and sociability in as little as a month) may be why you feel a difference. My second question would be how does Deplin impact the migraines and they explained the benefits of more monamines. I am very happy that Deplin is helping you and i hope you continue to make great progress. Please let me know if you would have any questions for me, hoping I can help you in any way. Always visit the Deplin website for more great information.

The extra short version of why I ended up on Deplin: A genetic test showed that I have a genetic mutation on my MTHFR gene. This mutation means that my body does not metabolize folate correctly. And the metabolized version of folate is indeed one of the things the body uses in balancing those three neurotransmitters you speak of. And at the neurological institute my neuro is associated with, they have found that the migraineurs who have this genetic mutation and who cannot tolerate commonly prescribed migraine prophylatic drugs often do well on Deplin.

The connection to the migraines in my case is as follows: Migraine is not a well understood phenomenon, and many of the drugs used for treatment of migraines were developed for a number of other conditions---including antiseizure meds and antidepressants. And many migraineurs are prescribed drugs in these categories for "off label" use because there is evidence that they can be effective in preventing migraines for some sufferers. (It is hypothesized that migraineurs do have problems maintaining proper brain chemistry; hence at the neuro institute where my neuro practices, they have found that keeping those neurotransmitters in balance does seem to help prevent migraining---in at least some folks.) Two of the most commonly prescribed meds for prophylatic treatment of migraines as well as a third that I was prescribed last spring all need the body to properly handle folate in order for them to be metabolized at the right rate for maintaining a reasonable therapeutic level of the drug. In my trials of these drugs, all three drugs triggered unacceptable side effects at doses that were less than the standard adult dosage after a ramp-up period. The PA in the neuro's office put two and two together and suggested the genetic test. The working hypothesis is that for folks who test positive for gene mutations on the MTHFR gene do not have enough of the metabolized folate to properly metabolize the drugs and clear them from the system in a timely fashion. Hence the drug levels build up faster than expected and can trigger severe side effects of the sort that I was experiencing. This neurology practice has had other migraineurs test positive for gene mutations on the MTHFR gene and they have had good results with these folks responding well to Deplin, even though treating migraines with Deplin is an example of "off label" prescribing.

And yes, the PA who suggested the test also explained that the particular genetic mutation I have has been connected statistically to higher rates of anxiety, hypersensitivity--both to drugs and to physical stimuli, and host of other things that can loosely be described as the opposite of "calm". The descriptions fit me to a T, quite frankly.

I'm not sure where you are going asking about whether the neuro or his PA explained the benefits of more monoamines since foods rich in monoamines are typically among the most common migraine triggers.

I have visited the Deplin website a number of times since being prescribed Deplin. And the information I've read there, along with what the PA told me about Deplin, and my own experience has led me to believe that some portion of my "calming down" is indeed due to the Deplin. But I also do think that the BiPAP has reduced the level of stress-related hormones circulating in my body during the night, and I also believe this too has helped to "calm" me down some.

I'd love to hear more about your experience with Deplin. Why was it prescribed? And has it helped you a lot or just a bit?

Robysue... all I can say is I hope after a year of giving this a go, I can have the class and the perseverance of making this work, in good times and in bad. I've only had my device a short time, and I have seen some very frustrating times. I've read a number of your posts and I wonder sometimes how someone who had a hard time for a long haul makes it work.

Keep up the hard road and it will all be worth it in the end.

- John

HoseCrusher wrote:I am confident that you can also take steps to rekindle your imagination and awe.

Here is a starting suggestion...

Each morning when you wake up, ask yourself what you can do today to rekindle your imagination.

Each evening when you are about ready to go to sleep, check up on yourself and ask what have you done today to rekindle your imagination.

I like this suggestion---as in really, really like this suggestion: It's cheap and straightforward to do. And doesn't require elaborate planning to make it happen: It's something *I* can do without making far more changes in my life right now. And it has the potential to really help me figure out where I *want* to go from here and how to get there once I know where it is I want to go. I think you're onto something HoseCrusher. Thanks for suggesting this idea.

For today: I can say that as I get ready to head off to bed for the night, what I've done to rekindle my imagination today is reading and re-reading all the suggestions made to this thread with open eyes and an open mind. And making the decision to start with this profound starting point suggested by HoseCrusher in the morning.

And now I really am off to bed for the night folks