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.
Here's a video that gives a rough idea of what to expect in a sleep study. (Like Endochick's, mine was split into two sessions... unlike the video)...
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.
8 comments:
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!
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
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!
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
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.
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
Wow, that's so interesting.
You are just the research queen!
Alicia,
I thought it was interesting. I can't tell you how many doctors I've seen since my sleep apnea diagnosis who have given me a puzzled look and then commented, "you don't fit the profile for sleep apnea".
Heaven forbid if a patient has a condition but doesn't hit every benchmark for it... then it's "good luck getting diagnosed".
People are complicated. Their symptoms don't always follow the textbook exactly... word for word.
Endochick was the one who inspired me to finally blog about sleep apnea. I've been meaning to for a long time but once she asked me about it and I knew we had a local endo support group member with it... and I thought I'd seen it on the CureTogether chart... then I decided it was worth blogging about as a potential co-existing condition to endo.
Jeanne
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