Primary Care asking for Second Opinion

[carbonman]

He thinks I just run at a "high-voltage" - and that the antidepressant could help break the cycle of headaches.

W'Jen, I think for people w/any type of sleep disorder,
drugs are not an answer.

Considering your "high-voltage" approach to life,
I would suggest you check out Barry Krakow's book,
Sound sleep, Sound mind.

He presents tools you can use to lower the voltage, so to speak.
Close your day and SOLO technique to relax you body,
TFI(thoughts,feelings,images) balancing to calm and shut down your mind.
I used his CBT techniques to break the clock watching/calculating sleep killer.
That alone made a hugh difference in my sleep hygiene.

I use these techniques not only at night,
but I have incorporated them into my day, as well.
When overcome by a stessful situation during the day,
the SOLO technique is a great way to relieve the stress
and bring your mind back into focus.

This is an incredible set of tools.
It is not an easy read and requires self-introspection,
on your part. It requires practice and effort to make
these things become a part of your routine. The practice of
TFI balancing has trained me to be aware, through out the day,
of pleasant and enjoyable feelings and images, that I can use
that night. That process has caused me to be more aware of
the enjoyable things that happen everyday that I might have
just pasted by or over looked.

Not as easy as popping a pill, but well worth the effort.

[jnk]

WearyJen,

In harmony with the other posters, I would like to stress again the fact that disturbed sleep can be a HUGE factor in the tendency in any of us to be hypersensitive to changes during the day as well as night, internal and external, physical and emotional.

Therefore, if you can, as stated, get sleep hygiene and PAP therapy optimal for you, you may find that drug threrapy for sleep or any possibly-sleep-related problems is no longer needed, since you may have addressed the root cause of all the other complications--if that is the case for you. The odds are good that is the case. I have heard more than one doctor say publicly that once their patients' sleep was improved by PAP, the vast majority of their patients no longer needed chemicals to sleep or to deal with a life that had previously been stressed by the lack of it. Naturally, there are exceptions, such as the cases in which the respiratory disturbances were not the root cause.

PAP therapy may seem overwhelming at first. (Everything seems overwheming to someone who isn't sleeping.) But if you can get past that to the point of making it work for you, you may find that few things in life tend to overwhelm you they way they used to. Or, at least, you will be better equipped to find the tools to deal with the rest of life.

jeff

[WearyJen]

The odds are very slim that pharmeceuticals of any type will help you become healthy. They should be a last (likely failing) attempt.

Here are the first things you need to do:

1) Practice immaculate sleep hygiene. Nothing fancy, just the basics followed strictly. Mayo Clinic site is a good resource.

2) Exercise. Again, just the basics, you don't have to be a fanatic (like me ) .

3) Healthy diet. Basics here - portion control, lots of fresh vegetables, some fruits, lean meats and eggs, limited grains, supplements but limited. Make sure bowel is regular.

4) Take a different attitude about CPAP and take control of your therapy - use CPAP, don't let it use you. CPAP is not a damn machine. CPAP is the only process that stands between us and our damned deficient airways and a damned poor life. Let's use CPAP to deal with the bad hand (airway) we were dealt and carve out a good life.

Your suggestions are great. However I do those already. My sleep hygiene is good. I usually have no trouble falling asleep. It's staying asleep that's the problem.

I exercise anywhere from 4-6 times a week. In the morning or at lunch so that it's not too close to bedtime. I'm 5'5" and 120 pounds, so my weight is not an issue.

I belong to a veggie and a meat CSA, so I eat a ton of vegetables and meat only from pasture grazed animals. I eat whole grains only for lunch every day. I bake my own bread. I cook every meal. I eat breakfast. I don't eat any processed food at all. No industrial meat. And I rarely eat in restaurants unless I'm traveling. And even then it's where they serve locally sourced food when possible. I'm kind of a fanatic about what I eat.

I'm doing the best I can with CPAP. I'm wearing it every night. I desperately want it to work. I'm trying everything I can to make it fit right, to make it comfortable. But it's depressing. It's uncomfortable. It makes me sad. It makes bedtime seem like a chore. It makes my bedroom not feel like a safe haven. It's only my third week. I'm doing my best.

[WearyJen]

Thanks for all of the encouragement. It's funny because the the stress level in my life is probably at the lowest it's ever been right now.

I'd love to be off of any and all chemicals (except for the allergy medicine - not sure that will ever happen!) I'll give the links and books a try and see if those help.

[BlackSpinner]

Your suggestions are great. However I do those already. My sleep hygiene is good. I usually have no trouble falling asleep. It's staying asleep that's the problem.

I exercise anywhere from 4-6 times a week. In the morning or at lunch so that it's not too close to bedtime. I'm 5'5" and 120 pounds, so my weight is not an issue.

I belong to a veggie and a meat CSA, so I eat a ton of vegetables and meat only from pasture grazed animals. I eat whole grains only for lunch every day. I bake my own bread. I cook every meal. I eat breakfast. I don't eat any processed food at all. No industrial meat. And I rarely eat in restaurants unless I'm traveling. And even then it's where they serve locally sourced food when possible. I'm kind of a fanatic about what I eat.

I'm doing the best I can with CPAP. I'm wearing it every night. I desperately want it to work. I'm trying everything I can to make it fit right, to make it comfortable. But it's depressing. It's uncomfortable. It makes me sad. It makes bedtime seem like a chore. It makes my bedroom not feel like a safe haven. It's only my third week. I'm doing my best.

Wow - just think of the mess you would be in if you weren't already doing these things!

It does take time to adjust and get it feeling comfortable. Part of it is a mental adjustment that rooster mentions. It is a lot like grieving - it goes through all the stages of grief, anger, resentment, acceptance. It takes time for your sleeping mind to relax and accept it can safely sleep.

My machine is right now my "blankie". My anxiety nightmares now are about forgetting to bring it.
Think of it as a symbiotic relationship.

A note : I found my allergies and asthma went down dramatically when I started cpap therapy. I guess my body likes 8 hours of filtered humid air .

[carbonman]

My machine is right now my "blankie".

This is so true for me.
Even more so since I started using mask liners
and especially PC's new mask liner.

As I relax at night or wake up,
or come back from a bathroom break,
I almost crave that warm, secure feeling I
get when I put my mask on and feel the flow of air.

I know my brain is safe and my new life will continue,
when I wake up.

[jnk]

. . . A note : I found my allergies . . . went down dramatically when I started cpap therapy. I guess my body likes 8 hours of filtered humid air .

Ditto.

The allergy meds can mess with sleep, too.

I found that much of what I and my doctors considered "allergies" was partially because of what I would now consider "nonallergic rhinitis," which, in my case, I believe was caused by the stress to the nervous system and hormone system from not breathing and sleeping well over the years. I still have allergies, mind you, but my immune system's inappropriate reaction to the allergens has decreased significantly since my PAP therapy began. Some doctors, I understand, now consider rhinitis to be sort of a migraine that occurs in the nose, if you will. A hyped-up immune system that is overstimulated by serious sleeping problems can be a miserable thing to endure.

I would recommend that anyone starting PAP therapy come off all medications that they can safely come off of. A body suffering from bad sleep may have MANY problems that a body getting effective sleep does not. The only way to know for sure is, withing reason, to start from scratch by seeing how a nonmedicated body reacts to PAP. Obviously, that should be done with a doctor's supervision, especially with certain medication that cannot be stopped abruptly.

That is my nonprofessional opinion as a patient, anyway.

jeff

[WearyJen]

I found my allergies and asthma went down dramatically when I started cpap therapy. I guess my body likes 8 hours of filtered humid air .

I'm allergic to so much seasonal stuff according to my allergy testing - from first day of Spring pretty much, to first frost. I use nasal spray to keep my nose open so I can even use the CPAP. And my allergies seem to be better at night with the CPAP. But once it comes off in the morning, all bets are off - I'm all itchy and sneezy, even with the nasal spray. And I find I need something else for the daytime. It's taken me a long time to find allergy medicine that doesn't seem to interfere with my sleep at all. Between the nasal spray and Singulair I think I have a good regimen. Allergy doctor suggested shots. I think I'm ready to consider it.

[Craig P]

WearyJen,

You might also try a nasal pillow instead of a full face mask as your pressure is so low. I have used nasal masks and FFMs and even with a max pressure of 16 sleep quite well with a Swift FX mask. The Swift FX is the most comfortable mask I have ever used. As others have said getting the right mask fit is one of the most important aspects of being comfortable with your xpap therapy.

[barb_z]

Take a different attitude about CPAP and take control of your therapy - use CPAP, don't let it use you. CPAP is not a damn machine. CPAP is the only process that stands between us and our damned deficient airways and a damned poor life. Let's use CPAP to deal with the bad hand (airway) we were dealt and carve out a good life.

Also, ask yourself a question... how long do you plan on living and what quality of life do you want?

[roster]

I'm allergic to so much seasonal stuff according to my allergy testing - from first day of Spring pretty much, to first frost. I use nasal spray to keep my nose open so I can even use the CPAP. And my allergies seem to be better at night with the CPAP. But once it comes off in the morning, all bets are off - I'm all itchy and sneezy, even with the nasal spray. And I find I need something else for the daytime. It's taken me a long time to find allergy medicine that doesn't seem to interfere with my sleep at all. Between the nasal spray and Singulair I think I have a good regimen. Allergy doctor suggested shots. I think I'm ready to consider it.

1) You don’t mention having asthma, so I am surprised that you use Singulair. Singulair is usually prescribed when asthma is present with allergies. It is not often prescribed for allergies alone. In some people, Singulair seems to negatively affect sleep architecture and can cause insomnia. Remember that people with sleep-disordered breathing (SDB) are often hypersensitive to anything that affects sleep.

2) You say you are using nasal spray. Is it correct that it is a corticosteroid type such as Flonase, Nasonex, Rhinocort and others? Please be aware that in some individuals one of the negative side effects is insomnia. This is the case for me, but the problem is avoided if I only use the spray in the morning. For some people these sprays are very helpful, so you may want to continue but use it only in the early morning.

3) I would recommend you try Claritin (weak antihistamine) or a little stronger one, Zyrtec. Generic versions of both are available. Both products have a good record of not interfering with sleep.

4) Allergy shots work wonders for many people and are definitely worth considering. If you trust the allergist, I would not hesitate to begin a series of the desensitizing injections.

5) Controlling congestion can help greatly with CPAP therapy. You may want to read Dr. Falcon’s posts in this thread -> viewtopic.php?f=1&t=36483&st=0&sk=t&sd=a

6) I disagree with Craig’s advise on switching to nasal pillows (but not his advice on shoes ). I assume you are using a full face mask because you were mouthbreathing during the sleep study. Since you have allergies, it is likely there are going to be times that you will reflexively mouthbreath while asleep. You need to stay with a full face mask. If you use a nasal mask and mouthbreathe, the therapeutic pressure can be lost and the CPAP will be ineffective.

7)jnk’s post brought something else to mind. You said “…. I've never been able to stay asleep.” A doctor that I admire and trust has said, “90% of all insomnia has sleep-disordered breathing as a root cause.” It is likely that you have had SDB for years and it may be the underlying cause of all of your sleep problems. Now you have a chance to work on the root problem and eventually put all this behind you.

8 )

I eat whole grains only for lunch every day. I bake my own bread.

Sorry for being picayune, but you may be eating too many grains. Whole grains are only marginally "less bad" that highly processed grains.

9) Again, being very precise, if your schedule is flexible enough, exercising between 3:00 and 5:00 p.m. is optimal for sleep hygiene. But better to keep your current schedule than make it a burden.

So getting the allergies resolved and preventing congestion, staying away from sleep medicines and all other psychotropic drugs, continuing the good diet/exercise/sleep hygiene practice, and developing intimate knowledge of CPAP is plenty to work on over the coming weeks.

Let us know when you are ready to talk about "data-capable" machines for monitoring and adjusting your therapy.

[Craig P]

6) I disagree with Craig’s advise on switching to nasal pillows (but not his advice on shoes ). I assume you are using a full face mask because you were mouthbreathing during the sleep study. Since you have allergies, it is likely there are going to be times that you will reflexively mouthbreath while asleep. You need to stay with a full face mask. If you use a nasal mask and mouthbreathe, the therapeutic pressure can be lost and the CPAP will be ineffective.

[/quote]

Sorry I didn't catch the part about allergies.

[jnk]

6) I disagree with Craig’s advise on switching to nasal pillows (but not his advice on shoes ). I assume you are using a full face mask because you were mouthbreathing during the sleep study. Since you have allergies, it is likely there are going to be times that you will reflexively mouthbreath while asleep. You need to stay with a full face mask. If you use a nasal mask and mouthbreathe, the therapeutic pressure can be lost and the CPAP will be ineffective.

Sorry I didn't catch the part about allergies.

When my rhinitis is bad, I find that nasal irrigation and turning UP the pressure on my autobilevel allows me to continue to use nasal pillows anyway. But it did take me a while to learn to keep my mouth shut when asleep. YMMV.

Now if I could only learn to keep my mouth shut during the day, at work.

jeff

[Uncle_Bob]

But it's depressing. It's uncomfortable. It makes me sad. It makes bedtime seem like a chore. It makes my bedroom not feel like a safe haven. It's only my third week. I'm doing my best.

Jen, Thats was pretty much my thoughts during my first month also. On top of the excellent advice already given I's just thought I'd add my 2¢

Pur-Sleep addresses the iussue of CPAP Desensitization through the use of aromatherapy, see link below

http://www.pur-sleep.com/products/produ ... category=3

It really helps to make the mask as comfortable as possible. How was your mask selected? Did you get to visit a DME and try on a number of different types of mask? Its quiet common for people to try several kinds before they find one they are happy with. I have tried about 10 different masks
If you want to try different masks without going through the DME then http://cpapauction.com/ is good auction site where new and used masks can be obtained at low cost.

Have you visited an ENT doctor and had your nasal passages checked out? A deviated septum can make congestion worse.
My ENT doctor told me that regular use of congestion spray can actually end up causing congestion.

Good luck I hope things improve soon for you.

[WearyJen]

How was your mask selected?

It's so complicated. I tried a number of masks at the office - many did not seem like candidates. I brought home two that seemed most likely to work - the Mirage Liberty and the Mirage Swift nasal pillows.

I have mild rosacea, so what I tested during the sleep study that went around my nose and on my cheek left a deep mark that lasted for hours.
My mouth guard for bruxism makes it a little hard to keep my mouth shut, plus I get mouth ulcers, so there are times when I'm definitely a mouth breather.
The Mirage Liberty left a nasty mark above my upper lip and a swollen upper lip that lasted all day. I tried a few workarounds with tape on my upper lip for padding, but the mask leaked as my cheeks puffed out and as I moved. Kept waking me up.
I do have a deviated septum.
I've been using the Mirage Swift nasal pillows. Works best out of what I've tried so far. I've been alternately trying homemade remedies for keeping my mouth closed - ace bandage wrapped around my chin/head with my mouth cut out, chin-up strips. Don't want to tape my mouth shut though.