I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kickingandscreaming on December 10, 2016, 05:01:16 PM
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My mouth always feels like it is full of sawdust. I drink plenty (on PD and still pee) but it doesn't make any difference. What is it about kidney disease or dialysis that makes the mouth so dry?
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Back in my pot smoking days, I was blessed with a wet mouth. Seldom having those episodes of 'cotton mouth' that many others had. That wet mouth has continued most my life, until now.
Only the last two days since switching to Hemo and my restricted intake of no more than one liter, and I don't think I've even drank that, I've had a very dry mouth.
Having very few teeth left, only the front lowers remaining, I do not crunch or chew hard things. I let a hard candy, when I rarely have one, melt on my tongue. This causes the glands to function, moisten my mouth and tongue and allow me to enjoy the taste.
Grandson enjoys gummy types and gave me a small Halloween bag I've kept in my jacket pocket since as I rarely have any candy, any type. I have used a couple yesterday and this morning. Last one this morning, so I stopped by the Patient Store and picked up a bag of the mini-bears.
Leaving the store I came across one of the Lady Neph's that made rounds this morning so I showed her my purchase and explained how I was planing on using them. She told me "No, that would be very bad for you now on Hemo as they contain phosphorus." And showed me it listed citric acid in the ingredients. Then proceeded to tell me of a patient that had sickened from very high P they managed to treat. It was only after finding the source, that he regularly consumed quantities of gummies, that his levels started to remain well. She further told me that 'mint' candies were one of the cleanest available and would work well to help me.
I immediately returned those gummies and exchanged for mint Lifesavers.
Wow, I am glad I ran into her. I was about to make a very serious error.
Once back on my floor the Nurse brought me a bottle of Perex-A-Mint they use to swab dry patient mouths. Peroxide with a mint flavoring. Directions say you can rinse and spit, or using the sponge on a stick applicator wipe and clear the dried secretions. I looked at the ingredients of the sponge applicators and found FIVE different types of sodium included. I placed the ball of my thumb over the opened top, tilted to make a wet spot and wiped that on my tongue. I was able to spread that and seemed to satisfy my need.
While I cannot explain why your mouth dries I hope this gives you helpful ideas of means to cope with it safely. I am still learning to pay even more attention to ingredients.
Take Care,
Charlie B53
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Hello K&S, I am very sorry for your dry mouth and can well imagine how irritating it must be.
... I have just been wondering if it could be caused by certain spices etc. in the food ?
I do hope you find an answer and send you my best wishes and good luck from Kristina. :grouphug;
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Thank you, Kristina. I don't use spices and my food is very simple, real food these days not even salt and pepper. Just the occasional cumin.
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:o
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Hi KaS some meds can do that. Any changes in meds?
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Not recent med. changes. I've added Velphoro (binder) to the mix, but that's been true for several months and this dryness is pretty new.
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Hi KaS I did find this as side effects of Velphoro
ADRs reported from the use of Velphoro at doses from 250 mg iron/day to 3,000 mg iron/day in these patients (n=835) are listed in Table 1.
Table 1 Adverse drug reactions detected in clinical trials
System Organ Class
Very common
(≥1/10)
Common
(≥1/100 to <1/10)
Uncommon
(≥1/1,000 to <1/100)
Metabolism and nutrition disorders
Hypercalcaemia
Hypocalcaemia
Nervous system disorders
Headache
Respiratory, thoracic and mediastinal disorders
Dyspnoea
Gastrointestinal disorders
Diarrhoea*
Discoloured faeces
Nausea
Constipation
Vomiting
Dyspepsia
Abdominal pain
Flatulence
Tooth discolouration
Abdominal distension
Gastritis
Abdominal discomfort
Dysphagia
Gastro-oesophageal reflux disease (GORD)
Tongue discolouration
Skin and subcutaneous tissue disorders
Pruritus
Rash
General disorders and administration site conditions
Product taste abnormal
Fatigue
Dysphagia is something to do with swallowing. I don't understand it completely, but could it be having the wooly effect on you?
Maybe ask your prescriber?
Love, Cas
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Thank you, Cas. I don't see dry mouth on the list. Dysphagia is difficulty swallowing and I'm not having that.
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I don't want to sound ignorant but what about the weather? I had to turn on our heater for the first time this year and have been crazy dry and thirsty ever since. I need to dig out our humidifier.
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That's a good idea and the cold/eat could be part of the problem but it's not the whole story. My mouth is only dry some of the time and the heat's on all the time.
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As the weather cools outside humidity can drop once it freezes, causing a corresponding drop in inside humidity. Even with the house heated and aair can hold humidity doesn't mean it will find the moisture it needs to stay humid. That cold dry aur that leaks in displaces the nice warm moist air, and we begin to dry out.
Has it snowed in your area? That would be a major shift from the soggy foggy nights.
Gramma used to keep a pan of water on the wood stove. It makes a big difference.
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I don't have any answers, but have you tried anything to alleviate it? I've used Biotene in the past; my mother's dialysis nurse had recommended it to her, and she was pleased with it. I've used it occasionally and think it is a brilliant product.
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Thank you, Kristina. I don't use spices and my food is very simple, real food these days not even salt and pepper. Just the occasional cumin.
... Unfortunately, sometimes we have to go through a very slow eliminating process with our medication, food, vegetables and ingredients etc. to finally discover the culprit...
... I have noticed that sometimes some foods/vegetables etc., which I could tolerate ever so easily in the past, all of a sudden become aggravating and give me disagreeable symptoms caused by the sensitivity of my body, due to ESRF etc...
... And I know from experience, that such an eliminating process goes sometimes painfully slowly, but with some good results in the end it is all worth going through it all ...
I wish you good luck and all the best from Kristina. :grouphug;
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Thank you, MM. Interesting product although according to Amazon, it's formula has been changed for the worse. I'll try if and report back.
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Thank you, MM. Interesting product although according to Amazon, it's formula has been changed for the worse. I'll try if and report back.
Oh, that's interesting. I read the newest reviews and they were all positive, so I'm not sure when the formula was changed. Was that recently? It looks like this product now has all sorts of forms; I guess it became so popular that they expanded their product range. Maybe you will find one that suits you. I don't think I've seen any other product on the market that specifically addresses dry mouth. I'm curious to hear about what you find!
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You can do a lot of things for thirst with dialysis patients for dry mouth, like hard candy, gum, ice and frozen fruit. Just make sure you count the ice and fruit towards your fluid restriction. I have hyperhidrosis, a sweating disorder. I take Ditropan (a bladder control medication) to help with it, but it and my allergy medicines dry me out big time. I find that Jolly Ranchers hit the spot. Werther's candy is great, too. Just check labels before you get anything.
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I think I'm zeroing in on the culprit in my dry mouth saga.
I'm pretty sure --around the time I started recognizing my dry mouth-- I had just started taking this protein supplement (Liqua cel) I am given at my clinic. I just did some searching and it is sweetened by sucralose (Splenda) and Neotame which I have read is even more toxic than aspartame. All of these chemicals I think wreak havoc on the body. But while they do that, they also cause dry mouth and intestinal upsets (which I've also been having).
So, I'm on the trail of the culprit and will stop using the product immediately and see if there is any change.
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I thought, possible wrong, that Splenda was a true sugar slightly modified somehow to remove calories. I managed to convince the Wife to switch to it years ago as she was using aspartame and I knew that was poison.
I do hope you get this figured out. Until then, the one of the Nephs bumped into me in the hallway at the Hosp outside the Patient Store. I had just bought a bag of the little gummy bears Grandson had given me from his Hallowween candy. They had been in the pocket of my jacket for a while and since I switched from PD tot Hemo the day before and stopped drinking water my mouth was like the desert I grew up in. The gummy work great if I just sucked on it. No chewing.
Neph Lady said an emphatic NO. Seems she had a patient who's phos was always wacked out dispite specific meds to help it never came down. UNTIL she found out about the gummy bears he constantly ate.
She told me one of the best things I could use would be most any mint flavored candy, like the Lifesavers, they have a couple of different one.
I told her Boss, the Head Neph during rounds the next day how she had helped me from making such as huge mistake. He already knew. She told on me.
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Although I have read many things that suggest that most artificial sweeteners have "their issues," I'm not sure whom to believe. For myself personally, I choose to avoid most of them. The only ones I use now are stevia, erythritol and monk fruit. These are the least industrialized. And I use very little-- only in my one cup of coffee. And now, I'm investigating (by withdrawal) whether the ones used in this protein supplement are bad for ME if not for everyone.
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Never heard of the other two, but I have a big bag of stevia. I use it half and half with real sugar. The combination works well for me. By itself I still have an empty feeling. Very hard to describe. Missing that coating, soothing smoothness on the tongue and throat. Does that make sense?
All the chemical swwetners leave different metalic traces plus none of that smooth soothing coating. I can tell if any of them are used in a heartbeat during the very first sip/swallow. I almost gag.
If I were dehydrated in the desert I could/would have to, survive on it. Given any choice, never. I drink my water, tea, coffee, whatever, straight up plain.
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Have you tried chewing gum? Minty gum might help Kickstart some natural saliva production.
Charlie.. I could be completely wrong here, but I thought citric acid was a potassium trigger to look for, not phosphorus. Granted, it's still something to watch, especially on hemo. I'm curious because my dietitian put Welch's Gummis on the "OK snack" list for Halloween.
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I get the two words potassium and phosphorus switched very often. Neither is good for us and need to be watched.
Remember, I'm a 'Guy' and often wrong. At least so the Ladies say. lol
Are we yelling MERRY CHRISTMAS to each other yet?
We should be!
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MERRY CHRISTMAS EVERYBDY
:rofl;
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My mouth is very dry after I eat salty food.
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Lemon tea is very good for dry mouth.
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Lemon tea sounds like a good idea. Anything lemony will start the saliva.
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I get the two words potassium and phosphorus switched very often. Neither is good for us and need to be watched.
Remember, I'm a 'Guy' and often wrong. At least so the Ladies say. lol
Are we yelling MERRY CHRISTMAS to each other yet?
We should be!
MERRY CHRISTMAS!!!
I didn't mean to sound nitpicky. I wanted to double check because I love my gummis and I can be way more flexible with potassium than phosphorus right now.
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I really don't remember which the Lady Neph said was in them. The only thing that hit me HARD was that they could be very bad for me now, not being on PD any longer, yet, hopefully.
YOU, should be fine.
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I thought kidney patients were supposed to stay far away from salt...
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My mouth always feels like it is full of sawdust. I drink plenty (on PD and still pee) but it doesn't make any difference. What is it about kidney disease or dialysis that makes the mouth so dry?
Hello K&S,
I have noticed that whenever I have a snack, which I did not cook myself at home, I feel instantly very thirsty. I have also noticed that most of all bought food contains many ingredients and they cause thirstiness to such a degree, that nothing could even quench the thirst. From these experiences I have concluded, that I have to cook everything from scratch at home and have to avoid all thirsty-making ingredients, ie, I have to cook without any salt, and without any sugar etc. This is very sad and that is unfortunately how it is ...
Good luck wishes from Kristina :grouphug;
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Roast lots of garlics and cook it with food. Delicious!
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I already do cook all my food from scratch and I don't add any salt.
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It took me 40 years not to add salt. It’s really really hard.
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Roast lots of garlics and cook it with food. Delicious!
Unfortunately I am totally allergic to garlic and could not touch it ... even the faint smell of it makes me sick...
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It took me 40 years not to add salt. It’s really really hard.
I have always suffered from high blood pressure (it is what killed my kidneys), so as soon as I moved away from home I stopped using salt in my food. I had no problem with that. Except on fries. I still crave salt on fries.
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Wife LOVES a local Chinese place. I have to admit I like it, HOWEVER, I really need to stay out of there. No matter how lite I eat at the buffett for hours later I am dried out. I don't doubt it is MSG in everything. The next treatment I am way over my usual amount.
Needless to say, we are no longer regulars there. Which sucks as we have been for a hair over 20 years already.
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I have to admit that in my teens I was a huge fan of both over salting my food AND using a lot of msg. Now that I'm salt free for 2 years I admit that i still really miss MSG ... especially on beef & green salads & in my homemade salad dressings. My dry mouth seems to be medication based right now as I'm not fluid restricted yet...I'm sure that will change once I start PD & what I'm dreading the most. Giving up salt was hard, restrictions water will be worse.
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I don't want to sound ignorant but what about the weather? I had to turn on our heater for the first time this year and have been crazy dry and thirsty ever since. I need to dig out our humidifier.
A humidifier works for me big time.
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I'm sure that will change once I start PD & what I'm dreading the most. Giving up salt was hard, restrictions water will be worse.
PD doesn't come with fluid restrictions as HD does. Which is not to say that someone under some circumstances will have to restrict fluids on PD. If you get your prescription right with PD, it does a very good job of regulating fluid.