Macular Gegeneration and CPAP

In the past 6 weeks my vision has gotten worse 3 times and again this morning . I was diagnosed with Macular degeneration Jan 06.

I just had eyes tested a month ago and had new lenses done. Just before I received my new lenses my eyes changed again. I didn't tell the doctor as my glasses were due to be picked up.

The glasses are not good and one pair usesless. Now this morning my eyes are even worse and none of my glasses are any good.

I am going to call the sleep doctor regarding this and am going to stop cpap therapy if I can't get changed to an APAP as I can't help wondering if it has something to do with straight air pressure instead of just the pressure needed.

My readings for apneas change day by day on the same pressure, no matter what that pressure is. One day they are high the next day they are very low then back to high or in between. This cycle repeats itself and I don't feel any better. I still struggle to stay awake and now I can't help wondering if the straight pressure doesn't have something to do with my vision getting worse.

I don't want to have a heart attack or stroke by not doing therapy but worse for me is not being able to read because I can't see.

I will call the doctor on Monday and ask for a prescription to have my cpap changed to get an apap machine, otherwise I am finished with therapy.


Hope no one else gets this problem. I already had macular degeneration so I don't think it causes it, but I am not convinced that straight pressure isn't making it worse.
If I cannot get a prescription for an apap and cannot exchange my cpap for an apap I will be writing my story for on editorial in the newspaper. It will be titled "Why people with sleep apnea give up on needed therapy".

Right now I am feeling very discouraged and scared for my vision.


I will let you all know how it goes after speaking to the doctor. It took two weeks to hear from him regarding raising my pressure the first time so I don't know how long that will be.

anne

Make sure you are not leaking air into your eyes. I use th quattro as well, and have occasional problems with air leaking from around the nose area blowing across my eyes.

RiverDave is onto something here. Maybe nasal pillows or nasal prongs would be better for you ( no air blowing into the eyes). Even with a full face mask, the Hybrid and the Liberty have the nasal pillows as well as a mouth section.

pianomagoo,

Do you think that it's the straight pressure itself, or do you have air blowing in your eyes that you think might be making your eyes worse? I've done some research on long-term effects of pressure (especially on eyes), but I haven't found anything. My vision, too, has been worsening over the past several years, but mine started BEFORE cpap, and after being diagnosed with Graves' Disease (autoimmune disease). Plus, getting older, too!

I also have dry eye problems that came up after CPAP. But my mask, the Hybrid, I don't think would be the problem there. Plus, I tried some "night goggles" made for people with dry eyes to wear when sleeping, and they didn't help any. Among other things, they would have blocked any air leakage, (if the Hybrid could actually blow into your eyes, which I guess it could if you had a leak on the top of mask, it might blow up the outside of you nose. ) Graves' can cause dry eye issues as well, though. So, can allergies.

Is it the macular degeneration that's getting worse, or your vision in general?

Pam

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CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP

Do you have diabetes?

That can also cause vision loss.

Good luck,

Den

From your post you sound lost. It's not likely XPAP treatment (if done correctly) is the cause of your eyes doing poorly. It would be more likely for them to do worse without XPAP treatment.

My eyes do poorly, I have diabetes, my vision changes every few hours depending on my blood sugar levels, allgeries also play a big part in your sight. I have that too 24/7, also face it we are getting older & worn down.

Stopping XPAP to cure your eye problems is like cutting off your nose because you have a cold. You need to address the eye problems, with a real doctor, I have my eye examination every 6 months, (was 3 months) putting in drops to reduce eye pressure, controlling blood pressure, and using glasses for the computer screen, three different pairs.

While it can't be restored, a good eye dr can help, and the rest we live with.

It sounds like your XPAP treatment isn't under control, I'd get that right too. I'd prefer you had a useful data machine like mine, but I sure others using Resmed's can help you get your treatment in line, if you really want to make the effort. Don't backstroke in DeNile. Jim

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CPAPopedia Keywords Contained In This Post (Click For Definition): resmed

I think you mean macular "de" generation not generation.

http://www.macular-degeneration.org/

Macular degeneration comes with aging and it can come on all of a sudden. Your eyes may stabilize in a year or two. You want to avoid eye fixes like lasik until they do. Talk to your eye doctor about it. Even if you have never worn glasses in your life it can hit and within a few months you need glasses for everything. Mine hit at 45, thought it was related to stroke and came on like someone flipped a switch, friggin body fell apart.

growing old sucks don't it?

Save yourself some money on glasses, go to drug store and get some of those $12 Dean Edell's reading glasses, I use the 1.25 to 1.50's. Checked my prescription, it was 1.30 and glasses were $287. I use the cheapos most of the time.

I have suffered terribly from dry itchy eyes since I started cpap 4 or 5 months ago (seems like ETERNITY). I faithfully put drops in them every night. My husband is a veterinarian - not an opthamologist!- but he thinks the pressure from the machine is causing air to blow from my sinuses up through the nasal lacrimal duct--thus drying my eyes out even when they are closed. Makes sense to me. By the way -- my 90 year old dad (and his brother) are both blind from macular degeneration. So this whole thing kind of scares me. I have also noticed lately that I've gone from a 1.5X reading glasses to a 2.5X. I attributed it to old age (51). I hope it is not cpap related. Snoredog-I get my reading glasses at Walmart -- 3 for 7 dollars.....

pianomagoo wrote: ..........
My readings for apneas change day by day on the same pressure, no matter what that pressure is. .........

What are the pressures you tried and what were the leak rates?

River Dave, Hawthorne, Weary One, Wulfman, Snore Dog, Goofproof, Goodnight Hoser, and Rooster...

Regarding leaks near or in eyes, I have been wearing a scarf over my eyes at night just in case I get an eye leak. I also adjust the mask even if there is a small noticeable leak anywhere in mask.

I wear the full face mask because I am a nose breather and also get stuffiness in my nostrils fairly often.

I have the ResScan ver 3.5 software which gives me AI, Hi, AHI, leaks, and summary reports etc. It gives me the length of my apneas (longest, over 50, some 47, 43, and down to 15 or so. I notice they come in large clusters at least twice a night at about 2 hours apart, and there are other apneas in smaller groups in between. That's when the apneas are high. The following night I can have as few as two apneas spread apart. In between the highest and the lowest readings on alternate nights can be followed by half of highest number. This is all on the same pressure.

I started off with prescription of 7cm. S8 Elite showed it as 5.8 -6.2 6.6
I couldn't breathe and called doctor to have it raised. It took two weeks to hear from doctor to have it raised to 8 or 9cm. I already tried 8, thinking I might get the original 7cm, (got 7. so I went to 9.2 and got 9cm. after three weeks, I tried 9.6 and stayed there for a couple more weeks then tried 10.2 for a week, then 11cm for a few days then up to 12. Nothing changes in my readings. They don't get worse nor do they improve. It is always alternating high then low then back to high or half of highest.


My leaks are generally at between .2 or .4 l/s and an occasional higher one because I have been fiddling with mask to adjust it or have lifted it to breathe.


I noticed back in 2003 that every year I got a new eyeglass prescription the print was never real clear. There was a little fuzziness. In Jan 2006, I changed eye doctors and the new eye doctor diagnosed me with macular degeneration. He actually told me I was going to lose my sight. After going through the stages of grief, I discovered a reason for living. Never played a musical instrument or learned to read music until this diagnosis. I discovered a passion for piano and am still learning and loving it.

I am 63 now and was 58 when my sight started changing. I know it happens to even younger people.

Now for Pam's concern (GoodNight Hoser).
Do I think the cpap therapy is causing the vision changes?

Truth is, I don't know. I am guessing as the only thing different in my life is the cpap therapy. I had asked for an auto-titrating machine at the beginning because I thought it would be safer. I was told you have to have over 13cm prescription to qualify for it (by dme). ResMed Home page says 10 cm is the qualification. Now this past six weeks and the past few days I am waking up with vision changes. The changes are very noticable from the previous day. This is scary!

My thoughts are that maybe because the pressure is straight pressure all night rather than just what I need when I need it, as an auto machine should do. Could straight pressure over 10cm be bad? Is that why ResMed recommends the auto at 10cm and above?I have questions for the doctor and I want answers why Resmed says 10cm and the dme says 13cm. I don't think he knows I have eye disease and maybe that does make a difference in the type of therapy?

If he doesn't want to give me a prescription for an auto or if the dme who refused the auto saying government won't cover it, gives me a problem then I may have to get one on my credit card which I don't want to do as It will cost more for a Canadian with all our taxes, delivery and exchange. I am on a very low income so this purchase will take a very long time to repay.

I think we should find out if it makes a difference what type of machine you use if you have eye disease and need pressures higher than 10cm?

I am going to bring a list of questions for the sleep doctor and printouts of the difference in one week or even 4-5 days of detailed data. I will also let him know about my eye disease, MD and how straight pressure over 10 cm might effect vision.

I want to thank each and all of you for your imput. I don't feel so alone and hope the doctor will be helpful. I may be worrying ahead thinking he might not.

In the meantime, I will lower pressure back to 9cm until I am able to see him.

One more thing. I just assumed I am mild because of 7cm prescription in the beginning. The RT at the dme said I was very severe. I never got my original report from sleep lab. I may try to see if I can get it. I don't have a clue what I am as I am all over the map on the readings.

Thanks, all

Anne

[quote="WearyOne"]pianomagoo,

Do you think that it's the straight pressure itself, or do you have air blowing in your eyes that you think might be making your eyes worse? I've done some research on long-term effects of pressure (especially on eyes), but I haven't found anything. My vision, too, has been worsening over the past several years, but mine started BEFORE cpap, and after being diagnosed with Graves' Disease (autoimmune disease). Plus, getting older, too!

I also have dry eye problems that came up after CPAP. But my mask, the Hybrid, I don't think would be the problem there. Plus, I tried some "night goggles" made for people with dry eyes to wear when sleeping, and they didn't help any. Among other things, they would have blocked any air leakage, (if the Hybrid could actually blow into your eyes, which I guess it could if you had a leak on the top of mask, it might blow up the outside of you nose. ) Graves' can cause dry eye issues as well, though. So, can allergies.

Is it the macular degeneration that's getting worse, or your vision in general?

Pam


Pam,

Sorry, I got your name confused with GoodKnight Hoser. I just wrote all the names down and jotted down the list of things that were mentioned and hoped I got everyone.

I do need to find out the answer to this question. i don't think it is normal aging vision loss as corrective lenses don't improve fuzziness.


Anne

Wulfman and GoofProof,

As far as I know I don't have diabetes but will have it checked out with the doctor when I go for my yearly checkup.

I would rather lose the use of my legs and all my hair, even, then lose my eyesight. Unfortunately we don't get a choice, short of a miracle. I do believe in miracles but also believe there is a reason for everything and some may get a miracle and another may not. I believe if it's going to happen then God will give me the grace at that time, although I really don't want to have to experience this. It's a good thing life is a temporary condition, at least on earth.

Anne

Piano,

You said:

" Is that why ResMed recommends the auto at 10cm and above?I have questions for the doctor and I want answers why Resmed says 10cm and the dme says 13cm."

I believe the answer about ResMed advocating an APAP at pressures above ten has more to do with the fact that as pressure goes up, people find it harder to stay compliant. Using APAP can keep the pressure a little lower until it is needed.

I'm not sure of the Canadian rules on when an APAP is covered. But there is a site that will help with getting you a machine. They are used and I don't know anything more than that. I think the website is secondwind.org. I will see if I can find out and get the address to you.

Good luck

EDIT:http://www.secondwindcpap.com is the correct web address. Like I said, I don't know anything about them, just that they have been mentioned on this forum before.

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CPAPopedia Keywords Contained In This Post (Click For Definition): resmed, DME, auto, APAP

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CPAPopedia Keywords Contained In This Post (Click For Definition): resmed, DME, auto, APAP

Pianomagoo---(love that name!) You will never be alone in this now that you've found this forum! You seem like you research all this stuff really well and are taking charge of your own therapy. I on the other hand stay up late reading this forum so I don't have to put the mask on. When I do finally go to bed I fling it off after about two hours. Then I go snorkel and snort in the guest bedroom so poor hubby can get a few hours of sleep before we're both up at 5:30 am. Thank God for sugar and caffeine. Good luck to you. Hope the piano playing goes well. Music is such a great comfort is life. GoodnightHoser

You sound deeply convinced that wrong air pressure is harming you eyes.
Your threat to stop therapy if an APAP is not OKayed by insurance shows youi are not as terrified of the harm done to your eyes by the nightly fight for breath and lack of oxygen. You should be.

Perhaps you don't know that you can get an APAP from cpap.com with a fixed pressure Rx - money is the only reason to wait for insurance to OK it. Let me say it again: You do not need an APAP on your Rx in oder to buy an APAP on line. You just need to be ready to pay whatever you have to pay in order to get the therapy you need.

Your macula is deep inside your eye - very far from the surface, and it is, sadly, degenerating for no reason medicine can explain.

You say "only thing different in my life is the cpap therapy". However the onther thing different in your life is your distancet from the minute of your birth. A degenerative disease means the disease will gets worse the older you get. That is is what degeneration is about: a worsening caused by time.

Severe apnea, and badly treated OSA are two ways of accumulating much additional harm to other parts of your body. Buy yourself an APAP and learn how to track your results and set your pressure properly.


O.