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“Jeanne’s Endo Blog”: Are Sleep Apnea & Endometriosis Co-Existing Conditions?

To view the striking chart below, just click to enlarge it:

This chart was obtained from the CureTogether blog in this story:

Endometriosis Survey Shows High Comorbidity Rates

Recently, Endochick was asking me some questions about sleep apnea. You see, I have obstructive sleep apnea and she was going for sleep studies and wanted to know more about it going in. (She had a study to be diagnosed with sleep apnea days ago).

See her blog post on it: Adventures in the Land of CPAP & Pain, Pain Go Away Don’t Come Back Another Day!

Someone in my local endo support group also has sleep apnea.

That got me thinking. So I took a look at the graph CureTogether produced to see if sleep apnea was included on the endometriosis chart. Sure enough, it was.

I know I haven’t blogged about my sleep apnea (too many illnesses, not enough hours in the day to cover them all).

Basically, my pulmonary specialist emphasized to me that not getting enough oxygen during sleep (when I stop breathing) can negatively impact ALL of my illnesses. By the way, I was referred to the pulmonary specialist when I flunked the echocardiogram-stress test and my lung pressure was too high (I was referred to the cardiologist by my PCP). So the cardiologist referred me to the pulmonary specialist to rule out pulmonary hypertension.

So it went:

PCP –> cardiologist –> pulmonary specialist –> sleep disorder clinic

Thankfully, the pulmonary specialist did not think it was PH. So he referred me to a sleep disorder clinic. There, like Endochick, I had 2 sleep studies. The first overnight study (called polysomnography) was to evaluate/diagnose me. The second night was to study my sleep with the CPAP (Continuous Positive Airway Pressure) mask on. The second study measures what air flow will be appropriate for a patient and then the doctor who ordered the test (the pulmonary specialist in my case) interprets the test results and prescribes a particular air pressure.

The next step is finding a CPAP provider from which to obtain the machine/equipment. (Hint: there are many)!

Since I needed latex-free (I’m allergic) and PVC-free materials (PVC is not good for endometriosis patients), I had to call around to several providers. I found one that was very helpful. The woman there researched the options for latex-free and PVC-free equipment.

Like many sleep apnea patients, my first headgear did not work out. So I had to start from square one. This very kind woman found another option for me. I wore it for awhile but developed sores on my head (in the back). My husband looked at them (since I couldn’t see them). They were painful, numerous and large. My husband said they were directly lined up to where my headgear meets my head. Great.

So I stopped using the CPAP and allowed my head to clear up. Then I went to the fabric store and bought some cotton flannel material for covering the headgear. As my dermatologist has drilled into my head, I washed the cloth several times to remove any chemicals like formaldehyde. (I’m allergic to formaldehyde and apparently garment companies routinely dip fabric in various chemicals at the manufacturing facilities, according to my dermatologist). So, I washed the cotton quite a bit and laboriously fitted it to the headgear as a barrier.

Again, I wore it for awhile until… you guessed it. I got sores on my head again! In the same exact spots.

By now I was totally frustrated. About this time I had a follow-up appointment with my primary care physician. She asked how I was doing with my CPAP. (Many CPAP users struggle with CPAP treatment, for a variety of reasons).

I explained where things were at. Long story short, she suggested putting another barrier between the headgear and the cotton cloth. So I did. The good news is that it worked as far as not causing any more sores. The bad news is that it makes my headgear slippery. So, heaven forbid I want to dare to roll over… my headgear falls off my head! (I’m not a back-sleeper). It’s set on the tightest setting. So this is a problem. My husband recently rigged some sort of velcro thing on it. Honestly, I need to get back into wearing the CPAP nightly. No wonder my Raynaud’s has been so horrible lately. I need some oxygen.

Aside from the fact that I can’t move without my headgear falling off or the fact that it blows cold air on my poor husband, I really WANT to wear my CPAP. I know wearing it will make me feel better. It’s just a constant process of adjustments and modifications to make it work. I’m working on it…

I saw a story on PBS about the risks of untreated sleep apnea and it was alarming. I went onto the PBS site looking for the story and found a URL but nothing embeddable. I think this was only the 1st of multiple segments they had featured but I definitely think it’s worth watching.

VIDEO FROM PBS: Just click the link below to view it…
Doctors Aim to Better Diagnose Troubling Sleep Apnea

Anyway, for for information regarding sleep apnea, you can contact:

American Sleep Apnea Association

Sleep apnea and endometriosis may not be extremely common co-existing conditions but the fact that sleep apnea does appear on CureTogether’s chart (above) and the fact that I know of multiple endometriosis patients who have sleep apnea too made me decide to post about it. Untreated sleep apnea can lead to a whole host of other health problems… some quite serious.

These risks include:

* Heart problems
* Heart attacks
* Poor quality of life
* High blood pressure
* Strokes
* Death
* Car accidents and work related accidents due to sleepiness

This article was posted by Jeanne via “Jeanne’s Endo Blog” at www.endendoat.blogspot.com.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: “Jeanne’s Endo Blog”: Are Sleep Apnea & Endometriosis Co-Existing Conditions?

11 comments

1 endochick { 03.24.09 at 7:42 pm }

Jeanne – Thanks for posting on this.

1) your embedded video isn’t working.

2) I can’t even begin to describe how much better I felt the next morning after waking up from using my CPAP at the sleep lab – and I’m a writer. I mean, come on, I should be able to describe things. lol But I woke up and just felt… alert. And it lasted until well into last night. Midnight came around and I should’ve been dragging! But there I was in the ER with my sister and I was wide awake! I actually had to take a bath when I got home to relax! LOL The whole drive home – 30 minute drive – I was alert! AT 11:30!! And I had been awoken at 5:30. That’s the quality of sleep I had gotten the night before with my CPAP mask and machine at the sleep lab! I couldn’t believe it!

2 Jeanne { 03.25.09 at 2:06 am }

Endochick,

Both videos work for me. Like we discussed offline, it might be your connection at the hospital.

I’m so glad the CPAP helped you so dramatically! That’s awesome! Very good news indeed!

Give my best to your sister and I hope she’s feeling better very soon!

Jeanne

3 Alexandra Carmichael { 03.25.09 at 2:32 am }

Glad you found the statistics on CureTogether interesting, Jeanne! At this point it leads to more questions than answers, but I think the people with co-morbid conditions hold the keys to important research discoveries. They are the people to study. Thanks for being part of this and contributing so much to the discussion!

4 Jeanne { 03.25.09 at 2:40 am }

Alexandra,

I know it brings up more questions than answers but I found it interesting that there were as many sleep apnea patients as there were on the endometriosis graph, especially since I know two people with endo who have sleep apnea besides me. It’s intriguing!

Jeanne

5 Jannie Funster { 03.26.09 at 2:24 am }

Fibromialgia and sleep disorders are linked too, I’m learning.

Jeanne, you are in my prayers for you to get the rest and peace of mind you deserve.

You have been dealt so much, I feel guilty for my relateive good health.

But maybe you’ll get to have a lot better stuff in heaven than I. You’ll have the finest gold bathroom fixtures, gourmet food and the biggest most wonderful fluffy pillows and softfragrant blankets imaginable which will allow you every night of blissful sleep.

6 Jeanne { 03.26.09 at 2:52 am }

Jannie,

Oh Jannie… my sweet friend Jannie…

Yes, fibro and sleep issues go hand in hand.

You are sweet and always say the nicest things.

You should never feel guilty for what you have.

First of all, it is what it is. Secondly, you have certainly had your share of loss and adversity. Thirdly, feeling guilty about my health situation won’t make me any healthier.

So don’t sweat it. 🙂

Ha ha. Now we get to the good stuff. Jannie, let’s hope there are no fragrant blankets in my future because they not only would NOT help me sleep but they’d cause symptoms like: feeling faint (OK… that’s sleep but not the kind I’d like), nausea, breathing problems, headaches, dizziness, coughing, etc.

In fact, this interesting link was tweeted today on twitter and we retweeted the daylights out of it:

http://findarticles.com/p/
articles/mi_m1594/is_1_11/ai_58916342

Sooooo, I’ll take the gold bathroom fixtures (although sick as I am when I typically visit the bathroom, I’m rarely looking at fixtures), I’ll take the gourmet food (as long as it’s not too “fancy”… I like “plain food” as a rule), I’ll take fluffy pillows (as long as they aren’t too tall for my fibromyalgia neck)…. but I will pass on the fragrant blankets.

SOFT, yes. FRAGRANT, no.

I love you Jannie!

Jeanne

7 Dysautonomia? Part 5 — ChronicHealing.com { 08.12.09 at 2:27 pm }

[…] have blogged about sleep apnea previously HERE. They did two sleep studies on me (one to diagnose, another to fit me for a CPAP mask and measure […]

8 jayNo Gravatar { 06.07.10 at 4:13 pm }

I am allergic to formaldehyde too and the tubing smells like formaldehyde. I am afraid to use the tubing as formaldhyde gives me an asthma attack. How do you find tubing that is formaldhyde free?

9 JeanneNo Gravatar { 06.10.10 at 12:50 am }

Jay,

Sorry for the delay in posting your comment. That is a good question.

When I started CPAP treatment for sleep apnea, I was so focused on finding latex-free, PVC-free equipment that formaldehyde never crossed my mind. I am allergic to formaldehyde but have not had a problem with the tubing I obtained from my CPAP provider. However, if formaldehyde causes you asthma attacks, it’s obviously important to select materials carefully! Other than asking your CPAP provider to search for formaldehyde-free tubing, here are some potential resources for information:

Health Care Without Harm This is a great organization for information about medical tubing. They may be able to help.

The Canary Report’s NING Social Network This is an awesome site full of caring, smart people!

Finally, there is the American Sleep Apnea Association. I am less familiar with this organization but since they specialize in sleep apnea, they might be able to help.

I can understand your concerns about using tubing that could trigger asthma symptoms. Hopefully, one of the above links will be helpful!

Last but not least, I have a family member who was experiencing SEVERE asthma symptoms before starting acupuncture. She was on 5 medications. Now, she is on NO medications and has been symptom-free for three years. (She used to use the nebulizer and inhaler around the clock DAILY before starting acupuncture).

Best of luck and please keep me posted on how you make out! I know CPAP can be a hassle but it is worth the legwork once you finally get using it every night.

As my pulmonary specialist put it, using CPAP nightly can help ALL of my illnesses… because when you’re not getting enough oxygen each night and when you’re not getting the restorative phase of sleep (which my sleep study showed I wasn’t at all), it affects pretty much everything.

Good luck!!

Jeanne

10 KirstenNo Gravatar { 01.24.11 at 9:59 pm }

Hi Jeanne,
I am wondering also about what equipment you DID end up going with, considering your search for latex-free and PVC-free things? I have chemical sensitivities and really really really can’t tolerate the cpap machine that I was given to try. I would really appreciate your advice. Thank you so much!

11 JeanneNo Gravatar { 01.24.11 at 11:34 pm }

Welcome Kirsten!

I wish I had a better answer as to how I’ve made out on the CPAP front but, honestly, it has been a long and frustrating struggle.

The equipment my CPAP provider came up with when looking for latex-free and PVC-free was a brand called Resmed. Resmed is a big brand in the world of CPAP and I’m sure plenty of their products are not latex-free and PVC-free… but the one I got was supposed to be both.

The machine and tubing are fine for me. The headgear is another story, I’m afraid. After putting various barriers between my head and the CPAP headgear, my husband took the whole darn headgear apart and put it back together. (His degree is in engineering. We decided to put it to use. Poor guy).

I would use it for about 5 nights consecutively (with re-adjustments every night because it loosened itself) and then I would give up. I didn’t want to give up. The part that adjusts the headgear has to be tightened so much to hold through the night that I couldn’t get it to budge when I tried to tighten it back up. So, I would ask my husband to tighten it for me because he could tighten it way past what I could do. Unfortunately, with my insomnia… this often meant me waking him up asking him to please adjust it again. (You can imagine what it was like for him to be woken up every night for that fun task).

Finally, my poor husband got so fed up with the thing (after 2 years on and off of battling with it… more on than off) that he finally threw his hands up and said, “just go back to the place and get another one” and that he didn’t know what else to do with it.

If only it were that simple. By now, the referral paperwork from the pulmonary specialist has long since expired and that specialist closed my chart out long ago (probably as soon as I was diagnosed with sleep apnea because he treats pulmonary hypertension exclusively).

I had talked with my primary care physician awhile back and she had mentioned referring me to a specific ear, nose, and throat doctor who is apparently more informed than most about sleep apnea. She said that she might be able to come up with some other kind of headgear that has a mouthpiece. I explained to her that I had avoided the mouthpiece type specifically because I have TMJ.

She then mentioned the possibility of surgery. This is what has deterred me from seeing this ENT.

If she could help me find a CPAP headgear I could tolerate… great! However, it was sounding to me like she’d be trying to talk me into either a mouthpiece type of headgear or surgery. I will not chance aggravating my TMJ with a mouthpiece type. (Besides, I have a bite guard to wear at night for the TMJ now).

I’ve had 7 surgeries (all unrelated to sleep apnea) and I have no desire for more surgery. (I’ve heard mixed reviews on surgery for obstructive sleep apnea. I’ve heard of people it worked well for and others it didn’t).

In any event, I am in a holding pattern for the CPAP but lately I have been thinking more about it. I know I need to find a way to make it work.

I am thinking of pushing back to my PCP now that some more time has gone by to tell her why I am not comfortable seeing the ENT she mentioned and see whether she can give me a fresh referral to get a new headgear from scratch. As my husband keeps pointing out (thanks to radio ads to CPAP providers now), some time has gone by and there may be something available now that was not available before.

I have the CPAP machine (rented until I owned it) and it’s in perfect condition. I could probably use some new tubing as the stuff I have is worn. It just seems to be a bit brittle instead of being totally flexible like it used to be. The original tubing wasn’t too bad to outgas. So, I’m not super-worried about that. I could use what I have while the replacement stuff is outgassing.

My headgear type goes up from the back over the head and comes down between my eyes. The bottom of that front portion has two nasal pillows. They are made out of silicone. I’ve had no problem with them at all. The problem with the headgear I have, for me, is the back/top part against my head. My body can’t handle the material or, as my husband pointed out, perhaps my head can’t handle the physical pressure of that device against my head. This made sense to me. Heck, if people can get bedsores from being in a bed too long, I can certainly see this clunky headgear being the cause of the sores on my head. It’s hard to say if it was an MCS reaction to the headgear or pressure. I suppose it could be a combination of both.

Obviously, everyone’s different and what works for one person may not work for another. I don’t know if anything here will help you figure out what will work for you.

Since you have chemical sensitivities, I would greatly appreciate it if you could keep me informed if you should find something that works for you. Please keep in touch so that I can keep you posted on any progress I make too.

You said you can’t tolerate it. What kind of reaction did you have? What part of the machine did you react to? Was it the headgear, tubing, machine…? I would be very interested to compare stories. I have found that comparing stories with fellow patients can be very helpful.

Best of luck to you and I hope you’ll keep in touch! 😉

Jeanne

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