Burning and stinging eyes, Bipap Mask breakdown
- Thread starter HalsWifeFran
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HalsWifeFran
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Right now, I'm testing Hal's urine every night - last pee before bed.
His diet is very simple: Through his g-tube, Nutren 1.0 plus fiber (very similar to Jevity 1.0 plus fiber, but it's what our insurance covers) - 6 cans a day - plus water, medications, and some vitamins.
Through mouth: daily a couple of chocolate chip cookies - he chokes on those, but feels its worth it..and an occasional (maybe twice a week) cup of thickened coffee or hot chocolate
His diet is very simple: Through his g-tube, Nutren 1.0 plus fiber (very similar to Jevity 1.0 plus fiber, but it's what our insurance covers) - 6 cans a day - plus water, medications, and some vitamins.
Through mouth: daily a couple of chocolate chip cookies - he chokes on those, but feels its worth it..and an occasional (maybe twice a week) cup of thickened coffee or hot chocolate
HalsWifeFran
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You are so welcome, Liz. I hope the information helps you. We're still playing with the dose.
I don't know about long term effects. Hopefully, if they exist, they are not serious. It is possible that having acidic blood, sweat, and urine are more serious than any long term effects of using this, anyway.
And right now, Hal is soooo very happy to have no burning in his eyes.
I don't know about long term effects. Hopefully, if they exist, they are not serious. It is possible that having acidic blood, sweat, and urine are more serious than any long term effects of using this, anyway.
And right now, Hal is soooo very happy to have no burning in his eyes.
Marjorie R. Wilcox
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I find this all very interesting. Rick doesn't have any eye soreness or dryness, but we do have much humidity in the air, and he is able to drink plenty of liquids. Could it also be attributed to medications causing this side affect? Rick doesn't take any prescribed meds. We do think he is beginning to breathe too much carbon dioxide, since he yawns a lot now every day. We will watch and look for it. Oh boy, what
else next?
else next?
HalsWifeFran
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It's not just eye dryness or discomfort. It's an intense, searing burning and stinging.. May be fast progression/muscle breakdown into the blood, which then needs to be fixed (by filtering via the kidneys) into the urine and sweat? It does seem like drinking a huge amount of water could help - that would dilute the acid and produce more urine.. Unfortunately, Hal cannot drink water, and also, needing to pee is a real inconvenience for him and also is uncomfortable - so he doesn't choose to have me give him too much water - just the amount the nutritionist says he's supposed to get - about 40 oz per day in addition to his 6 cans of Nutren. Good thought, though, and great plan for Rick - encourage him to keep up that drinking!
Marjorie R. Wilcox
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Don't forget to try putting humidity in the air. Anything is worth a try. You can get a cold air humidifier cheaply at Walmart or anywhere.
LizT
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thanks for the tip. im planning on just getting the test strips to see if he is acidic. if so, then we will try what Fran has suggested.
I dont think that it a lack of mosture though, because they still burn after drops. its not just a regular annoying stinging eye. its incredibly painful, deep burning sensation. sucks for our PALS.
I dont think that it a lack of mosture though, because they still burn after drops. its not just a regular annoying stinging eye. its incredibly painful, deep burning sensation. sucks for our PALS.
HalsWifeFran
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Sorry I took so long to answer Liz'e dosage question! Been a very busy week, with a broken washer, interviewing home health agencies for some part time assistance, etc.
I keep playing with Hal's dose - trying to find the lowest amount that keeps his urine non-acidic and his eyes not burning. When it's not enough, his eyes start to burn again - but he says it's not nearly as severe as it used to be before we started using the product. Then I increase until it goes away. I don't tell him what dose I'm giving him each time. I don't think there is any placebo effect here - it's real. We see it in his urine, which seems to correlate with his burning. The BiPap mask has been holding up really well since we started doing this.
The capsules say 1-2 capsules twice per day. The drops say 8 - 10 drops 2-3 times per day. They are not meant to be used together, since they are similar. The capsules seem to be more long-acting.
The typical dose we've used (and it works) is 3 capsules twice per day (morning and night) PLUS 20 drops in the afternoon. I have gone higher (highest: 3 capsules plus 8 drops morning and night, 1 capsule plus 20 drops afternoon)- and lower - but lower isn't working for Hal right now..I think each person would have a differnt dose need - which is why the urine pH test is a good idea.
I keep playing with Hal's dose - trying to find the lowest amount that keeps his urine non-acidic and his eyes not burning. When it's not enough, his eyes start to burn again - but he says it's not nearly as severe as it used to be before we started using the product. Then I increase until it goes away. I don't tell him what dose I'm giving him each time. I don't think there is any placebo effect here - it's real. We see it in his urine, which seems to correlate with his burning. The BiPap mask has been holding up really well since we started doing this.
The capsules say 1-2 capsules twice per day. The drops say 8 - 10 drops 2-3 times per day. They are not meant to be used together, since they are similar. The capsules seem to be more long-acting.
The typical dose we've used (and it works) is 3 capsules twice per day (morning and night) PLUS 20 drops in the afternoon. I have gone higher (highest: 3 capsules plus 8 drops morning and night, 1 capsule plus 20 drops afternoon)- and lower - but lower isn't working for Hal right now..I think each person would have a differnt dose need - which is why the urine pH test is a good idea.
HalsWifeFran
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Sorry I took so long to answer Liz'e dosage question! Been a very busy week, with a broken washer, interviewing home health agencies for some part time assistance, etc. Hal is rapidly losing strength in many areas - so transfers are becoming very challenging for the two of us, speech is harder for him to make and for me to understand, hands are really losing it, etc.
I keep playing with Hal's dose - trying to find the lowest amount that keeps his urine non-acidic and his eyes not burning. When it's not enough, his eyes start to burn again - but he says it's not nearly as severe as it used to be before we started using the product. Then I increase the dosage until it goes away. I don't tell Hal what dose I'm giving him each time. I don't think there is any placebo effect here - it's real. We see it in his urine, which seems to correlate with his burning. The BiPap mask has been holding up really well since we started doing this.
The capsules say 1-2 capsules twice per day. The drops say 8 - 10 drops 2-3 times per day. They are not meant to be used together, since they are similar. The capsules seem to be more long-acting.
The typical dose we've used (and it works) is 3 capsules twice per day (morning and night) PLUS 20 drops in the afternoon. I have gone higher (highest: 3 capsules plus 8 drops morning and night, 1 capsule plus 20 drops afternoon)- and lower - but lower isn't working for Hal right now..I think each person would have a different dosage need, and that might change from time to time - which is why the urine pH test is a good idea.
I keep playing with Hal's dose - trying to find the lowest amount that keeps his urine non-acidic and his eyes not burning. When it's not enough, his eyes start to burn again - but he says it's not nearly as severe as it used to be before we started using the product. Then I increase the dosage until it goes away. I don't tell Hal what dose I'm giving him each time. I don't think there is any placebo effect here - it's real. We see it in his urine, which seems to correlate with his burning. The BiPap mask has been holding up really well since we started doing this.
The capsules say 1-2 capsules twice per day. The drops say 8 - 10 drops 2-3 times per day. They are not meant to be used together, since they are similar. The capsules seem to be more long-acting.
The typical dose we've used (and it works) is 3 capsules twice per day (morning and night) PLUS 20 drops in the afternoon. I have gone higher (highest: 3 capsules plus 8 drops morning and night, 1 capsule plus 20 drops afternoon)- and lower - but lower isn't working for Hal right now..I think each person would have a different dosage need, and that might change from time to time - which is why the urine pH test is a good idea.
LizT
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thanks fran. that seems like so much. but i take it the levels in his urine are in the safe range after you give him so much.
i should be getting the test strips in the mail tomorrow so i will test my PALS and take it from there.
i should be getting the test strips in the mail tomorrow so i will test my PALS and take it from there.
Barbie
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After reading this post I went to a local health food store and bought some alkamax capsules. I couldn't get my husband to use the the urine strips, so I just started giving him the minimum dosage (1 cap twice a day). wow what a difference and a relief! I open the capsules and mix the powder with applesauce. it doesn't taste bad and goes down easy,
I think the stuff is great--I am just basing the dosage on what helps him. if the 2 caps don't do the trick then I''ll up it to 3. His eyes feel so much better now. Thanks so much for the info.
I think the stuff is great--I am just basing the dosage on what helps him. if the 2 caps don't do the trick then I''ll up it to 3. His eyes feel so much better now. Thanks so much for the info.
notme
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Just a word of caution: Potassium levels might need to be checked if there is a high amount in the stuff--it's one of the electrolytes that can cause a lot of problems if not in proper balance--and it has a very narrow margin for correct levels.
In my dad--his potassium levels actually stopped his heart. His date that night happened to be an RN and did CPR and saved him--but docs were very careful to monitor his potassium after that.
In my dad--his potassium levels actually stopped his heart. His date that night happened to be an RN and did CPR and saved him--but docs were very careful to monitor his potassium after that.
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