I was recently diagnosed with Severe Obstructive Sleep apnea and was told that it was one of the worst cases they have ever seen.  I had over 100 episodes of apnea in an hour.  I am currently using a Bi-pap machine with 30 mg of internal air pressure and 25 external.  (I was told that is unheard of).  In addition to this condition, I also have a deviated septum (total mouth breather), hypothyroidism, PCOS, GERD, and was recently diagnosed with Diabetes.  Needless to say I have a full face mask and I am having some difficuties.
1.  Since there is so much pressure I am not getting a consistent seal throughout the night.
2.  I am waking up with so much air in my system b/c of the high pressure and I have gas for most of the morning.
3.  (this one is crazy).  Both of my eyes are completely swollen when I wake up in the morning.  (They look like I was in a boxing match.)  It takes at least 4-5 hours for the swelling to subside.

No one is able to help me figure out what to do about #3.  If anyone has any suggestions, please let me know.

Thanks

Hi Greenridge,

First, I am sure Sleepydave, who is a wiz at understanding sleep studies, would love to see your results.  If you can get them, please post them under the sleep study section.

By definition of the number of apneic events, your apnea is severe, but many of us (including me) have apneas in that range so that is really not that uncommon.  What makes it unique however is the amount of pressure required to overcome your obstruction.  Wow, that's some hefty pressure.  I didn't think XPAPs actually went up that high.  I thought the upper limit was 20 cmH2O (that is the unit pressure is measured in with a manometer, it literally measures the air flow required to move H2O in a tube measured in centimeters).  Someone please correct me if I am wrong about the upper limit of XPAPs (the X meaning it can refer to CPAP, APAP or BiPAP).

As far as FF masks go, the best mask for higher pressures is a Fisher & Paykel Flexifit 431, so you might try that one.  If your mask is a ResMed or Respironics FF mask, they start leaking at much lower pressures for most people.

I had to think very hard about your puffy eyes.  The first piece of information I had to keep in mind was that the edema (intracellular fluid is what causes puffiness) is around your eyes, outside of your mask.  The next pertienent piece of info. is that you are using a FF mask.  And the third piece of info. is your high pressure.  I know this isn't an option, but bear with me.  My guess is that if you used a nasal mask, or better yet, nasal pillows (air goes directly into your nose through soft probes inserted into your nostrils) you would not have edema around your eyes.  The reason being is that I believe the high pressure is pushing fluid from your face which is under the mask into the surrounding eye tissue.

So aside from switching to another type of interface, what you might try is to sleep on a wedge so that gravity is in your favor and the old standbys of a cool wash cloth on your eyes in the morning.

Keep us posted!!

Vicki


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That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

I have learned about a chemical exposure which is very common in our society since before WWII days, and I believe that it causes things like you are talking about ... and CFS, CFIDS, FM ... just depends on how you want to group all the things it causes.

Diabetes, NHL ... lots of things are what it causes, but every thing else seems to get the blame.

Anyway, I was wondering whether or not you might have your own exposures to 2-butoxyethanol or ethylene glycol monobutyl ether ...  It has lots of other signs, though

It is never just one thing only

What kind of work do you do?  What kinds of employment did your parents have?


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Do people with this condition have CFS? CFIDS? of FM? or did parent?

Clues to find fatigue

Quote:

Both of my eyes are completely swollen when I wake up in the morning. (They look like I was in a boxing match.)  It takes at least 4-5 hours for the swelling to subside.

No one is able to help me figure out what to do about #3.  If anyone has any suggestions, please let me know.

I only came to this forum, because on my own discussion forum someone asked a question about narcolepsy, and I was comparing the difference between that and sleep apnea.

The swollen eyes would mean something to what I suspect causes a lot of sleep problems, regardless of the exact name.

The route of exposure is through the eyes.  Do your eyes also burn and hurt?  Do they seem dry?  Is your urine dark?  Are you TIRED?  ... a tired that no rest helps, such as in CFIDS?

So, I ask you, "What are you doing since the swollen eyes, that is differen than before this?"  Is there a new person in your home or work?  That is an important question, too, because there is a very strong second hand exposure.  You can pass on your health ailments to others around you, too.  As you are breathing out this chemical in your respiration, it is easy to expose someone else, like your spouse or children.

I've spent 3 years learning about 2-butoxyethanol and you are invited to look at my posts on my own discussion forum, if you want to understand it from a lay-perspective.

If I am right, you should have trace blood in urine, and red blood cells should be prematurely destroyed by your immune system.

How long has this been going on?

Are you a painter?  Do you clean a lot?  Are you in the military?

Actually, maybe you are being exposed to the chemical 2nd hand by someone in your own household ... or you would notice the eyes hurting during the day ... and not just when you wake up (?)

OR there could be some of this chemical in the sleep apparatus you use which wouldn't bother most people, but maybe you have had too much exposure in the past, so for you it is a concern.  OR, maybe you are allergic to something in this new equipment.  Need more information


_________________
Do people with this condition have CFS? CFIDS? of FM? or did parent?

Clues to find fatigue

Mother Margaret,

I very concerned that you are disseminating incorrect information by putting Greenwich's post on your forum.  You are incorrect about the cause of Obstructive Sleep Apnea (OSA).

OSA is exclusively caused by a physical blockage in the airway by the tissues of the throat.  Greenwich's OSA was shown definitively by a highly detailed overnight sleep study.  His concern is about his puffy eyes which are directly correlated with his recent use of a BiPAP to treat his OSA.

It is very clear that his fatigue and sleeping symtoms are due to his severe OSA and not due to a hemolytic anemia.  People do acquire hypothyroidism and diabetes.  As your links indicated, if he had Gulf War Syndrome or toxicity due to chemical exposure, his symptomology would be greater than these two overlapping illnesses.

For your poster's information, there is no such thing as "Narcolepsy genes" or blood test to determine Narcolepsy.  The diagnosis of Narcolepsy can be obtained with a high degree of certainty (but not 100%) using Cerebral Spinal Fluid.  This requires a lumber puncture which is much more involved.  Also, there are no "Narcolepsy Genes"  there is correlation with a Human Leucocyte Antigen (HLA) subtype, but is simply a correlation as many individuals in the population carry it.  There are neurological tests as well.  If you really want to help your poster, don't post misleading messages from this forum on yours, but direct him to these links.

http://med.stanford.edu/school/Psychiatry/narcolepsy
http://www.narcolepsynetwork.org/
http://www.sleepfoundation.org/
http://www.nhlbi.nih.gov/

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

I gave Gary these basic definitions.  Does that give him the right perspective?  I'll also e-mail him your comments.

I didn't think there was any such thing as narcolepsy genes, just by reading a little info, however, Gary must have thought so based on what his doctors were telling him they were checking for.

In Gary's case he does have severe exposure to the chemical I've studied, and as usual, blood info looks OK, and fatigue is not found.

An industrial sign maker - 2-BE exposures -
This is his background
Today, he shared his current symtoms with me:

Continuous headaches
Pain in the eyes
Sinus problems
Shifting sleep patterns
insomnia or too much sleeping
need stimulants ( prescribed adderall ) to stay awake
feel not refreshed upon waking up tired during the day
low energy levels
difficulty falling asleep, wake up too early, wake in the night
 
peripheral vision does not have normal width, poor tolerance for bright lights
poor tolerance for loud noises
dizziness, vertigo, balance problems, disorientation,dizzy upon standing,
inappropriately hot, inappropriately sweating, rotating hot and coldspells
worsening memory,  trouble remembering recent information, slowing responses
 
moody, irritable, angry, depressed, anxious, trouble concentrating
joint stiffness
night sweats, increased thirst
difficulty breathing with exertion
itching dry skin no matter how much lotion I put on.
feeling sluggish and hung over when no alcohol has been consumed in over 4 years.
muscles ache, joints ache, rotating hot and coldspells
hands shake, flustered easily when given multiple tasks
Cyst on Head feel like they are putting pressure on my skull & brain

Quote:

These all look like the signs of the 2-butoxyethanol exposure, even though you had concerns for other chemicals
 
Can you check into the glyconutrient info... I think that is the best help out there, but since it is not a drug, but a nutritional supplement, it shouldn't hurt you
 
Could you mail a list of your symptoms to the doctors you have worked with recently ... and ask about blood in urine and red blood cells that are small sized - immature?
 
Can you compare any blood/urine tests to see how they look over time?

and ....

Quote:

Well, again, the blood in urine and the red blood cells that are small sized may be the only things that show up right now.
 
This is hard to figure out ... or the doctors wouldn't say they don't know what the fatigue is
 
Some of your add on symptoms may be the medications you are taking.   They add to your chemical load
 
I would be in touch with these 3-4 doctors for consultants for your doctor ... and I would be sure to see about the glyconutrients
 
mannarelief and mannatech both sell them,  
 
Go to the GLYCONUTRIENTS on the discussion forum
Glyconutrients?  
 
and be sure to copy off this web page for your doctor
www.valdezlink.com/pages/foryourdoctor.htm
 
If they still have your blood sample be sure they check everything: like hormones & what your immune system is doing
 
Maybe something else here
www.valdezlink.com/check_blood.htm
 
If there are any medications that do not help you,
ask your doctor about getting off of them.

The things you are concerned about, may also be part of this chemical's effects ... it goes all the way from minor fatigue & muscle weakness ... to ALS ... so it is possible

All I wanted to give to the posters question was my viewpoint.
There is a link to your forum, to see the full spectrum ... or you are welcome to give your own viewpoint to the question on my forum

Here is another example of hurting eyes in the AM


_________________
Do people with this condition have CFS? CFIDS? of FM? or did parent?

Clues to find fatigue

Hi Again Mother Margaret!

Greenwich indicated that the tissue around his eyes is swollen, not that his eyes are hurting or burning.  I appreciate you passing the Narcolepsy info. on to your poster, but my concern was simply that OSA and Gulf War Syndrome, two conditions with completely different etiologies become confused by patients with OSA who desperately and quickly need to be directed on the right path for treatment.  I wish Gene well!

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

To start off with, I am female - 37 yrs old.  I was not born around WWII nor have I been in the military.  

Vikki I requested a copy of my sleep study results which I will post as soon as I get them in.  

In addition to what I previously mentioned was wrong with me, I recently had elevated liver ensymes and have to have a liver CT scan.  I also had high levels of c-reactive protien and have to have a thallium stress test.  My PCP believes I may have some type of infection that has caused an inflamation in my liver.  

Getting back to my sleep apnea problems.  I have been told that I  have one of the best masks for the amount of air pressure I am receiving, but it still leaks in the middle of the night and wakes me up.  

Q.  How often do you have to clean the mask, hose, humidifier, filter?
Q.  I was told to use distilled vinegar ever 2 weeks to clean my accesories, is that necessary?

 

.... very same things that the gulf war syndrome vets would describe

Do you have blood in urine?  Do you have red blood cells that are small sized?  That's a couple of questions that should be easy enough for your doctors to answer.  If you do have immature red blood cells then lots of other tests have to be determined manually and not by computer.  

So far, based on what I'm hearing you say, I still suspect exposure to 2-butoxyethanol AND if you don't have the fatigue that goes with ... then did either or both of your parents.

The only point in mentioning WWII ... is that many of our parents/grandparents WERE affected by this chemical then, and since it can cause reproductive harm ... singular birth defects can show up (but without someone having the fatigue)... in my case I have Syndrome X and type 2 diabetes which I do suspect from my father's exposure in the 40's on a Navy war ship.


_________________
Do people with this condition have CFS? CFIDS? of FM? or did parent?

Clues to find fatigue

....



Last edited by another_guest on Tue Oct 31, 2006 10:54 pm; edited 1 time in total

Hi Greenwich,

I'll PM you.  This thread is getting rather long and off topic (no offense to you at all another).

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Greenridge wrote:

Q.  How often do you have to clean the mask, hose, humidifier, filter?
Q.  I was told to use distilled vinegar ever 2 weeks to clean my accesories, is that necessary?

 

My respiratory therapist told me to clean my mask with a pure soap every morning and let it air dry.  I use Ivory dishwashing detergent on a wash cloth and wipe around the inside and outside of my mask then rinse very well.  I have a basket on my bathroom counter with a clean, dry washcloth and I set my mask on there to air dry.  Wash the humidifier pieces and hose the same way once a week and then let them soak in the vinegar solution (I'd have to look at my written instructions, but I think it's one part vinegar and 2 parts tap water) for a while.  Rinse and air dry.  Hope this helps.


_________________
Ramona


Determination gives you the resolve to keep going in spite of the roadblocks that lay before you. - Denis Waitley

Vicki wrote:

Wow, that's some hefty pressure.  I didn't think XPAPs actually went up that high.  I thought the upper limit was 20 cmH2O (that is the unit pressure is measured in with a manometer, it literally measures the air flow required to move H2O in a tube measured in centimeters).  Someone please correct me if I am wrong about the upper limit of XPAPs (the X meaning it can refer to CPAP, APAP or BiPAP).

CPAPs top out at 20- above that, you really need BiPAP for exhalaiton relief. My Synchrony ST tops out at 30- the Quantum PSV I used at first went higher...maybe 35? Not all BiPAPs go as high- the ones targeted at OSA user (regular BiPAPs), tend to top out at 20 or 25.