Macular Gegeneration and CPAP

Hawthorne · Post by **Hawthorne** » Sat Aug 09, 2008 5:07 am

Pianomagoo- I am also Canadian and the sleep medicine system here in Ontario is terrible. You know about it too. Long waits and riduculous criteria for the machine you can get with Government assistance.
I bought my own auto online with my 5 year old prescription. It is for a cpap with a pressure setting of 10. Cpap.com will sell you an auto with that type of a prescription. It will cost you about 1/3 what a machine costs in Canada. There will not be any duty or taxes on it (at least I have never had to pay any duty or taxes and I have bought lots of sleep apnea items online from US companies) since it is identified as a "medical device" when it is shipped. I get masks tha way too -lots cheaper! You pay the price they tell you plus shipping. That's all. You need to be sure you get their price since prices have gone up and they are required to list a certain price. If you contact them it will be less that it says on their website. There is a message there telling you to contact them for their price.
Please be sure you get to a good Opthomologist as well though. You need to do all you can to see if it is the cpap straight pressure that is causing you more problems or something else.
If you get an auto, the people on this forum will help you set it up. It would be even more helpful if you could get the software and reader as well.

pianomagoo · Post by **pianomagoo** » Sat Aug 09, 2008 6:37 pm

Hawthorne wrote:Pianomagoo- I am also Canadian and the sleep medicine system here in Ontario is terrible. You know about it too. Long waits and riduculous criteria for the machine you can get with Government assistance.
I bought my own auto online with my 5 year old prescription. It is for a cpap with a pressure setting of 10. Cpap.com will sell you an auto with that type of a prescription. It will cost you about 1/3 what a machine costs in Canada. There will not be any duty or taxes on it (at least I have never had to pay any duty or taxes and I have bought lots of sleep apnea items online from US companies) since it is identified as a "medical device" when it is shipped. I get masks tha way too -lots cheaper! You pay the price they tell you plus shipping. That's all. You need to be sure you get their price since prices have gone up and they are required to list a certain price. If you contact them it will be less that it says on their website. There is a message there telling you to contact them for their price.
Please be sure you get to a good Opthomologist as well though. You need to do all you can to see if it is the cpap straight pressure that is causing you more problems or something else.
If you get an auto, the people on this forum will help you set it up. It would be even more helpful if you could get the software and reader as well.

_______

Hawthorne,

Thanks so much for this information. I forgot that I didn't pay taxes on the software I bought from cpap.com/I am overdue for my yearly checkup with my family doctor so will make an appt, I will ask him to check for diabetes, or anything else that could cause vision to blur and a couple days later to blur more.

I have yearly visits with eye doctor because I have eye disease. Last February visit I thought my vision was stablizing. Six weeks ago I had a sudden change so called the eye doctor he did not charge me for this extra visit and I had ordered new lenses and was allowed to use my old frames. Before I received my glasses my eyes changed again and they have changed twice since within another two day period. This has always happened in the morning or at least that is when I first noticed it.___

I am also going to call the sleep doctor on Monday to set up an appt to discuss my concerns and to ask for a prescription for an auto titrating, as I will feel more comfortable and less worried about it affecting my eyes. I am hoping they will do an exchange at the dme. If not, I will use the new prescription for an apap machine on cpap.com

You have been very helpful and encouraging, Thank you.

Anne_______

CPAPopedia Keywords Contained In This Post (Click For Definition): cpap.com, CPAP, Prescription, auto

pianomagoo · Post by **pianomagoo** » Sat Aug 09, 2008 7:04 pm

Thank you River Dave for the site. I checked it out and will keep it in mind.

Ozji, Thank you for the encouragement. I was scared and wasn't thinking straight. I will continue therapy but intend to talk to sleep doctor regarding my concerns and to let him know that I will be more comfortable and less worried about eyes with an auto-titrating machine.

My goal is to get the prescription and my hope is that they will exchange it for an auto-titrating machine. If I can't get the trade I will buy it from cpap.com

I'm really grateful for this site as it is so easy to get discouraged at times.

Thank you,

Anne

herefishy · Post by **herefishy** » Sat Aug 09, 2008 7:05 pm

Pianomagoo, if you have macular degeneration, you don't need an opthalmologist, you need an opthalmologist specializing in diseases of the Retina, and even with your medical system, you should be able to see one. He very possibly will be able to stop your macular degeneration from progressing, as there are new treatments.

pianomagoo · Post by **pianomagoo** » Sat Aug 09, 2008 7:44 pm

herefishy wrote:Pianomagoo, if you have macular degeneration, you don't need an opthalmologist, you need an opthalmologist specializing in diseases of the Retina, and even with your medical system, you should be able to see one. He very possibly will be able to stop your macular degeneration from progressing, as there are new treatments.

Hi Herefishy,

Here in Canada the only treatment that has finally been approved just recently (Canada is very slow) is for wet macular degeneration. It is getting injections in your eyeballs every month for two years. Here in Canada, I believe you only qualify for one eye for six months?

I have forgotten the name and the details. I asked the doctor how long you have to wait when dry macular degeneration turns wet? He said six weeks is the wait time. If both eyes are affected you can only have one done at a time and must wait another six weeks for the other to be treated.

According to an eye specialist in the states who has macular degeneration and wrote a book on it, you shouldn't wait more than 2-3 days before having it treated. I don't know the reason for the six week wait.

There is nothing you can do for dry macular (which can turn suddenly at any time in some patients). They tell you to take Vitalux vitamin. I also take Lutein. Mine is still dry and until it turns wet I don't qualify to see a specialist. There are only two specialists in my area.

My right eye has always been bad but is really bad now. My left eye is getting worse lately. I have macular degeneration in both, but it hasn't turned wet yet. It turns wet when the blood vessels begain leaking.

I get scared each time I have a sudden vision change but after a couple days I begin adapting to what I can't change and start focusing on what I want to accomplish while I can. To me that is more study in piano and practice. It is one thing I will get enjoyment from if I lose all my sight.

I so appreciate all the encouragement and help I have gotten from everyone who posted me.

Thank you,

Anne

kteague · Post by **kteague** » Sat Aug 09, 2008 8:29 pm

My mother had macular degeneration, as well as two friends, and they weren't on cpap. Seems to me there's so much of that we hear of, that there's a good chance it's likely just gonna happen. I was recently diagnosed with glaucoma, and I wondered the same kinds of things you are, like if OSA could have caused it or if cpap treatment could have. Or maybe it was the Prednisone causing high pressures. Or maybe all these things just happened to be going on when it was discovered.

I went off the Prednisone and began a regimen of eyedrops and my pressures are staying around 19 or 20. Doc said if my pressures had stayed in the 40s I would have progressively lost more vision and within 2 years been in total blackness. Scary stuff.

Hope you have a good eye doctor who will answer your questions, and if they don't know the answers, will utilize their sources to let you know at least what research is saying about any relationship between cpap use and your condition. Let us know if you find anything out.

Hawthorne · Post by **Hawthorne** » Sun Aug 10, 2008 4:44 am

Pianomagoo - I was glad to be able to help with what I know cpap in Ontario and ordering from the US.
Your eyes are probably your biggest concern. I can understand that! It must be difficult but you are handling it as best you can. You are keeping it checked and have a good doctor.
Keep posting. Members of this forum are a great help!
All the best!

herefishy · Post by **herefishy** » Sun Aug 10, 2008 7:35 am

Glad you are getting the attention you should be and keeping up on the latest advances. The one thing I have heard of that you might want to try in addition to the lutein is zeaxanthin. From what I have heard it is one of those things that can't hurt and might help. In the states we can get it in combo with Lutein rather inexpensively. Sure glad I don't live in Canada, and hope our leaders don't decide to follow your example for our medical care.

Hawthorne · Post by **Hawthorne** » Sun Aug 10, 2008 11:05 am

Pianomagoo - I've been thinking about your situation and, if I got the type of machine you have correct, you have Exhalation Relief on it. EPR is it called on your machine? Do you have that turned on? I checked your posts and didn't see any mention of you having that turned on. You may have mentioned it and I missed it but thought I would mention it.
I have C-Flex/A-Flex with my Respironics machine, also exhalation relief. I have A-Flex set at 2. When I exhale the pressure backs off (almost like no pressure at all during exhalation). If EPR works the same on your machine, you would have lower pressure when exhaling so it would not be constant pressure all night. Just another thought.

roster · Post by **roster** » Sun Aug 10, 2008 11:41 am

pianomagoo wrote: ...... 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. ........

Piano,

Don't forget this issue when you see your sleep doc. Those clusters of long apneas can be doing some damage.

Good luck.

pianomagoo · Post by **pianomagoo** » Sun Aug 10, 2008 4:01 pm

Kteaque, Thank you for understanding my fear. My husband was diagnosed with glaucoma june 2003. He is also on eye drops. He is fortunate that his sight is still much better than mine. Everyone is different.
I hope yours stays stable for many, many years.

Herefishy, thanks for the info. There is zeaxanthin in the Vitalux mix.

Hawthorne, I tried EPR a couple months ago but stopped as I wasn't getting enough air with prescribed pressure and the EPR was too fast for my very slow breathing pattern.

Now that my pressure is higher I will give it another try tonight and see what happens.

May Resmed could adjust the settings for very slow breathers. That would be great!

Thanks for the reminder.

Rooster,
Thank you for the reminder. I have all my daily readings in pdf form both on the software program and in my document files. I made a yearly file folder (2008) then I made a separate folder for each month. I copied all my daily information to each monthly folder. I intend to add a note to each monthly folder on which daily files have the highest AI and which has the lowest AI each week and for the month.

I am hoping this will make it easier for me to be able to keep track of any progress or lack thereof.

I will bring printouts to the sleep doctor when I can get an appointment. I am going to call his office first thing tomorrow morning. I will bring a paper with a list of my concerns, re- the macular degeneration and straight pressure, as well as why I still have morning headaches and fight to stay awake and have nights sweats many nights.

I am going to ask him if he will write a script for an auto-titrating machine as I will feel more comfortable and less worried using one that just gives me the high pressure when I need it and adjust down inbetween.

I will get an apap. I need to see if I can get my cpap exchanged first with the doctor's script. If not, I will have to buy one. I hate going in more debt but health does need to be a priority.

Everyone on here is great! This forum is a real blessing to everyone.

Thanks to all of you. I never felt so cared about. It feels good.

Anne

Macular Gegeneration and CPAP

Macular degeneration

Re: Macular degeneration

River Dave and Ozji

retina specialist

Re: retina specialist

Vision and cpap

Macular degeneration

Macular Degeneration

Re: To all who posted back to me

Kteaque, Herefishy, Hawthorne,and Rooster

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