Old 03-06-2011, 11:44 AM #1 (permalink)
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Default Burning and stinging eyes, Bipap Mask breakdown

I think we have a solution for the stinging and burning eyes that some PALS experience. Hal had been experiencing this for a while. His eyes were red and sore, but no crust or other signs of eye infection. Initially he was wiping his eyes all day. It got worse, plus he got weaker, so I took over - using a wet cloth to remove the irritating sweat. It would get so painful that he would not be able to open his eyes. Then Hal had an idea of the source of the burning: One of the by-products of muscle breakdown is acid. Urine, sweat, and all body secretions can become acidic to keep the blood pH normal. Hal also breaks down his BiPap masks really fast. We're wondering if the acid sweat is responsible for this as well. So I went online and ordered a supplement from Vitacost.com called "AlkaMax" alkaline booster..I bought two forms: Capsules and liquid. The capsules come with pH strips to measure the urine acidity. The liquid is really easy to use. Here is what the liquid says on the package: "Stress, toxins, and poor diets can create excess acids that make you feel tired, weak, sick, and older than you are. AlkaMax provides alkaline mineral buffers that soothe the system and neutralized acid. ."


Anyway, I started giving the AlkaMax to Hal about a week ago. I am still giving him a total dosage of twice what is recommended on the package, but I intend to try lowering that.. I mostly use the liquid - it's easier to mix in with his liquid going into the g-tube - but I'm also mixing in a couple of capsules per day, which I break open and mix with his dissolved medications. Anyway, within two days, Hal's stinging eyes stopped stinging! Completely! What a relief! Hoping it helps prolong the life of his BiPap masks as well!
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Old 03-06-2011, 12:07 PM #2 (permalink)
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Default Re: Burning and stinging eyes, Bipap Mask breakdown

You guys are brilliant. Thanks for posting the information, Fran. I've had the burning, stinging eyes for years. Do you think this is safe for Hal's stomach in regard to his being able to make the acids to break down nutrients? I ask because I've been doing some exploring on the subject of acid reflux, and learned quickly that alkalines (Tums, for instance) are dangerous if used long term.
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Old 03-06-2011, 12:51 PM #3 (permalink)
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Default Re: Burning and stinging eyes, Bipap Mask breakdown

Very good question, Ann. I have also read that long tern use of antacids can decrease absorption of nutrients. I'm not sure if this will happen with the AlkaMax..The problem is, PALS stomach acids might be perfectly normal, but blood pH may not be, because of muscle breakdown, which is not related to the stomach. But the body regulation systems, to normalize blood pH (a necessary thing to keep PALS alive!), would cause the sweat and urine to become acidic. SInce we need to approach the whole thing from the stomach, and can't directly change b]the blood pH 9unless you use an IV!) we might end up needing to make the stomach more alkaline than is optimal.
My plan plan is to keep doing the AlkaMax at a hight dose for a few of weeks. I want to give Hal's eyes a break, see if the BiPap masks last longer. After a couple more weeks of no burning eyes, I plan to try lowering the amount of buffer we use - and see if the improvements continue. Also, some nutrients are absorbed just fine, even with an alkaline stomach pH, and even for long term. Others, like calcium for bones, are not. I'll need to research that more. Right now, I'm just really happy that Hal's eyes are NOT BURNING AT ALL!
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Old 03-06-2011, 01:00 PM #4 (permalink)
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Default Re: Burning and stinging eyes, Bipap Mask breakdown

Another thought - "long term" bad effects of antacids might be relatively benign or very slow to develop - and maybe the short term/ongoing effects of having acid urine and sweat are worse, only because that is relatively rare it does not get much publicity.
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Old 03-06-2011, 02:05 PM #5 (permalink)
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Default Re: Burning and stinging eyes, Bipap Mask breakdown

this is excellent news! my PALS eyes burn so badly on a daily basis. and since he uses his eyes for communication, it really restricts him more than he already is. i will mention this to him and see what the dr says. thank you so much and i hope it continues to work for him!
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Old 03-06-2011, 06:48 PM #6 (permalink)
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Default Re: Burning and stinging eyes, Bipap Mask breakdown

Thank you for your research and for sharing your results, Fran. I have just started to experience burning eyes. And gosh, they do burn. We will try the remedy.
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Old 03-06-2011, 11:38 PM #7 (permalink)
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Default Re: Burning and stinging eyes, Bipap Mask breakdown

Keep us posted! My husband's eyes burn all of the time, too. However, we have not noticed a breakdown of his BiPap nose pillows.
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Old 03-08-2011, 01:41 AM #8 (permalink)
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Default Re: Burning and stinging eyes, Bipap Mask breakdown

I'm curious about this. It's my understanding that one result of not being able to exhale enough carbon dioxide is an increase in blood acidity. If you're taking in supplemental oxygen, you might not breathe enough to keep your carbon dioxide right, since your need for oxygen is being artificially met.

So my request is, would those of you who are having acid problems please post, specifying whether you're on supplemental oxygen.
Thanks.

I am not a doctor. I don't even play one on TV, so please don't use anything I've written here as a basis for medical decisions. Thanks.
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Old 03-08-2011, 08:35 AM #9 (permalink)
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Default Re: Burning and stinging eyes, Bipap Mask breakdown

I am not on supplemental oxygen.
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Old 03-08-2011, 10:31 AM #10 (permalink)
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Default Re: Burning and stinging eyes, Bipap Mask breakdown

Fran, I'm so glad you're able to find relief that works for Hal! As for any side effects, my take on that is... there are both good and bad with most everything, so individually we just decide what's more important. Incidentally, I have also read that as nerves die, they leave residue behind to be sweated out. This problem is very common within the community.

Pitterpatter, no supplemental oxygen here either.
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Old 03-09-2011, 12:54 AM #11 (permalink)
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Default Re: Burning and stinging eyes, Bipap Mask breakdown

Thanks for the feedback, you two.

Looks like another brilliant hypothesis goes down in flames in the face of inconvenient fact.

Sigh... Oh, well, it's something I'm used to, by now.
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Old 03-11-2011, 01:00 PM #12 (permalink)
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Default Re: Burning and stinging eyes, Bipap Mask breakdown

Hal is not on supplemental oxygen. Don't know how that would affect blood pH - but if eyes burn, and urine pH is consistently acidic, I expect the AlkaMax might still help.

Another note here: I tried decreasing the amount of AlkaMax I was giving Hal - to see if he would still be okay. The AlkaMax capsules come with pH testing strips. Their recommended urine pH is 7.5. The strips range from 5.0 to 9.0. When I'd had Hal on the double dose of the maximum recommended daily dose, his urine pH read 7.5 - just what it should be. I thought about what Ann ("Abbas child") had mentioned about nutrient absorption, and decided to try dropping Hal to about 1.3 times the recommended max dose (still higher than they recommend on the bottle for the general public). I did not tell him. His burning eyes came back. (I'm so sorry, Hal!) We tested his urine pH - and it had dropped from 7.5(neutral/slightly alkaline) to 5.0 (very acidic). So now he is back on the double level dose. Our plan: We'll keep testing his pH, looking for symptoms, and from here on out, I will prioritize certainty of burning eyes over possibility of decreased nutrient absorption.
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Old 03-11-2011, 04:38 PM #13 (permalink)
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Default Re: Burning and stinging eyes, Bipap Mask breakdown

Fran- Is that the only possible side effect of long term use of the alkamax? if so, i agree that its worth the risk.
so it comes with the strips to test the urine? or do you have to get that seperate?
like i said above, my PALS eyes burn so bad that some days he cries.
can i get it from the local store or do i have to order it?
sorry for all the questions. im just excited.
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Old 03-12-2011, 10:23 AM #14 (permalink)
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Default Re: Burning and stinging eyes, Bipap Mask breakdown

The large bottle of capusles come with test strips. The liquid does not, but the strips can be purchased separately. I've been using both - the capsules I break up and mix with his medication - 3 in the morning and 3 at night, a total of 6. (The bottle recommends up to 4 capsules per day).

The liquid I mix with his canned liquid food in the middle of the day - 20 drops (The bottle recommends up to 10 drops 3 times a day)

I upped Hal's dose back to the high doses yesterday morning. He had burning all day, but it lessened, and by last night it was gone.

I ordered the products online, just a a try-it out thing, through vitacost.com. I'll be ordering more:
90 Capsules plus test strips$14.75: http://www.vitacost.com/TriMedica-Alka-Max
Drops: http://www.vitacost.com/TriMedica-Alka-Max-PH-Plus-Liquid
It also comes in a 200g bulk : http://www.vitacost.com/TriMedica-Alka-Max-Alkaline-Booster/?vbnpid=31808

The description of the powder forms (capsules and bulk) say they contain licorice and potassium, and because of that should not be used if you are taking certain heart medications or have high blood pressure. The liquid drops do not contain licorice or potassium and do not say that. Hal does not have blood pressure of heart problems - and when I ordered them, I was thinking that the powder form might be stronger, but I don't know that for a fact. Thee best part is being able to test the urine pH. You can alway get the strips separately. We might try different things once Hal has no burning for a while. I love no burning!

There is a very large health food store in Santa Barbara that carries a small size bottle of ALkaMax (30 capsules) and sells test strips separately. More expensive. You can also buy other similar products. You'd have to call around to see if anyone near you carries products like that. For me, getting out to shop is sometimes really difficult, so I do as much as I can online.
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Old 03-12-2011, 04:27 PM #15 (permalink)
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Default Re: Burning and stinging eyes, Bipap Mask breakdown

Thanks for the info! Mine feels battery acid is in them!
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