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    • #25972
      Jen Cueva

      My mouth stays dry because of taking 3 different diuretics. This causes an increase in gum disease. It’s embarrassing to go to the dentist. I tend not to go as often as I should even with dental insurance. I had beautiful teeth and gums for years before PH. Amazon is said to help relieve dry mouth.

      Do you have dental issues? If so, is it related to your diuretics or other PH meds? What have you found that helps you improve your gum and overall oral care? Please share your tips. You never know who it may benefit.

      Do we have anyone who works in the dental offices here to weigh-in?

    • #25988

      @jenc, the folks at my dentist’s office joke that I should be invited to office picnics etc. because I’m there so much. I’ve had dental issues for many years, I think partly because my siblings and I didn’t have much dental care when younger and also because I found out I had a severe vitamin d deficiency. The care we had when younger was traumatic to me because the dentist we went to was ex-military and didn’t exactly believe in numbing etc. I have a pretty high pain tolerance overall, but not when it comes to dentistry. Because of my fear of dentists I didn’t go as much as I should have, and will admit I still don’t do all I could as far as daily attention to my teeth. I do go regularly to my dentist now, have had a lot of work done, and am doing pretty well right now. They know I’ll get the work done, I just don’t want to feel it! Since my ph, scleroderma, etc. were undiagnosed for so long I’m not sure how much effect they may have had with my teeth issues.

      Have you tried Xylimelts for your dry mouth, Jen, or any of the dry mouth rinses? I’ve used xylimelts with my cpap machine at night for a long time and they work really well. The dry mouth rinses and sprays I’ve tried are ok, but they never seem to work as long as advertised. I’ve read that sucking on sugar free lozenges is good for dry mouth as well. The best thing I did as far as gum/oral health is get myself a water-pik machine, which my dentist was happy I did! It really gets between teeth, under the gums, and massages the gums. If I hit a period where my gums are bleeding some I get more strict with the water pik and my gums do better almost immediately.

      Sorry for such a long reply!

    • #25991
      Jen Cueva

      Hi @dawnt, you never have to apologize for a long post. Your reply is quite helpful and offers me, and I am sure others support in helping oral care. I believe Xylimets may be the ones that I put under my tongue. Is that them? I ordered from Amazon, and I need to look and reorder.

      Vitamin deficiencies certainly can impact our overall health, including oral care. For me, the most dental work that I had was just after spending weeks in the hospital one year with no oral care except wherever my fam and nurses did. I was not awake. This was a few years back. Since then, I have been trying to keep my appointments. I had a tooth extraction that I needed because my bones will not support an implant. That was just before COVID, so waiting to schedule.

      I am grateful that you share about your Waterpik machine. I have an electric toothbrush that helps some, but I need help with my gums, too. What kind do you have if you don’t mind me asking? I mentioned this to my hubby just recently, but he told me they could be quite costly. If I can find one that is affordable, I believe, like you, it will help with my oral care. Thanks again.

    • #26001

      Hi, Jen and Dawn! I just learned a few things from the both of you. This was a great topic.

      I have never heard of xyliments and I am most definitely going to check them out. I usually buy the Biotene Dry Mouth Lozenges, which have a mild mint flavor and xylitol in them which is suppose to help stimulate normal saliva secretions. They don’t seem to last long although. I do find using the Biotene mouthwash helps and especially at night before I go to bed I swish a little in my mouth. I use a CPAP with oxygen and this seems to help me from waking up with such a dry mouth.

      The water pik is a great idea, too! I am considering purchasing one of those also. My son has one and loves it. He said that it has really helped him with his teeth.

      I haven’t went to the dentist much either because I lost my dental insurance when I had to quit my job once I discovered I had PH. I was having a lot of issues with my teeth before I was diagnosed. I ended up with gingivitis and some periodontal disease. I remember my dentist saying that I needed to take better care of my teeth and I tried telling him that I was already doing that. I even had bought a sonic toothbrush to help with that. I was so angy when I left his office that day, because I knew that I was doing what I should be doing. I had really good teeth previously and could never understand why I was having so many issues with them. After quite a bit of dental work, I found out I had PH, so I believe that had a large impact on my teeth.

    • #26034

      Hi @jenc & Rayetta. Jen, you could put xylimelts under your tongue but the packaging says to ‘adhere’ it to a tooth or gum. The ones I’ve used are small,round, one side white & one side brownish. The brownish side sticks to your tooth or gums, cheek, roof of your mouth etc. My dentist said because they have xylitol they are great for the teeth and you can actually stick it right on a tooth without worry. I use the ‘mint free’ kind, they still have a slight flavor of mint but it’s not overwhelming. I use two each night, stuck inside my mouth on my cheeks, because I use a full face mask on my cpap. When I was using an under the nose headgear I just used one nightly. I, like you Rayetta, hate waking up with a mouth that is soo dry and a tongue that feels like it’s 4x larger than it should be. I find these xylimelts take care of that for me. I don’t use any one brand, honestly I order online the least expensive I can find and usually get 6-8 packs at a time. I’ve used the biotene dry mouth rinse and colgate dry mouth rinse, but don’t find they last long.

      The water pik I have is the Waterpik WaterFlosser Ultra. Gives you 90 seconds of reservoir time (I use warm water), comes with different attachments, 10 pressure settings, and the attachments store in the reservoir lid. It’s electric, which I like because batteries never last long. I got this at Walmart a good few years ago, around $59.99 at that time. I can be cheap, but felt I had to do something to help with my teeth and it’s been worth every penny and more. It’s gross, but interesting, how much you can clean out from between your teeth with this even after you’ve flossed. As I said before, when I get sore gums or redness, bleeding or some receeding this makes my gums feel so much better. The super bonus is spending far less time in the chair during cleanings at the dentist!

      I actually have many crowns at this point. I lost a couple teeth due to infection around the roots, and one that basically blew apart as soon as the dentist started drilling in preparation for a root canal. Although I’m not always the most diligent with caring for my teeth, the hygienist & dentist both see a huge difference with the water pik and the number of cavities found at each cleaning has gone way down. I’ve even had a few ‘nothing needs done’ visits, but for me those are not the norm no matter how much I try. They’ve told me this is due to hereditary issues, as both parents lost all their teeth and had dentures, and the medical issues that have been found.

    • #26041
      Jen Cueva

      Hi @rayetta-meverden-johnson, I am happy that this has been helpful to you. I continue to learn daily from our forum members. This is what it is all about.

      I have used the different Biotene products and have not been the fondest of those. The Xylimelts, I believe a coffee shop owner suggested those last year. I ran out and needed @dawnt’s reminder to reorder them.

      Ph affects our entire body, and many people focus only on the lungs and maybe the heart. It is incredible how our bodies react to every little thing. I have been told numerous times by the dentist and hygienist how dry mouth is horrible for my oral care. I have worked harder but thinking of trying a water pik, too.

      Good luck to you in maintaining that oral care once it is where you want it. I am still not there with mine. COVID hampered that as I had been in for my deep cleaning, and we found one bad tooth. I am hoping that this does not cause more issues, leaving it so long. Have you been at all this year? Dental insurance helps so that I can understand. Have you found any free or reduced costs dental clinics in your area? I know that my dentist works one weekend per month in Houston to provide free dental care. He rotates with numerous others throughout the month.

    • #26042
      Jen Cueva

      Thank you much, @dawnt, for sharing this information. See, it is not only helpful for me but others, too.

      Yes, that is the Xylimelts. I heard about these from my favorite local coffee shop owner. He used them with his CPAP at night. He came one day and sat down to talk with me and shared that with me as I was on my oxygen. He showed me his order on Amazon, that is where I ordered from. I do, now remember that he said in my cheek, but I automatically put it under my tongue without reading the directions. I know, not the best idea!

      I agree, Dawn, $60 would certainly be worth less time in that dreaded dental chair. I told my dentist years ago; I would rather have a heart cath that dental work. He laughs and reminds me how much I already go through. He is so good and my hygienist, too. I have been seeing him for years, and he has done some fantastic work on my teeth. I am still not yet there, but getting there. Maybe this water pik will do the trick.

      I was almost in tears when the oral surgeon saw me before COVID and did Xrays that reveal that my bones are crap and not worthy of holding an implant. So, that one tooth is what needs to be extracted. Soon, I am hoping to reschedule that. So right, Dawn, so many things can contribute to our overall oral care. How often do you go now? Every 6 months or yearly for cleaning?

    • #26078

      @jenc, I go every six months for a cleaning….and then usually the follow-up work that needs done. Not every single time do I need work, and it’s usually only 1 or two small cavities. Much better than it used to be. I know my limited scleroderma can affect my gums/mouth too, so know I have to be more vigilant on staying on top of the dental issues.

    • #26087
      Jen Cueva

      Yes, @dawnt, my plans allow every 6 months, too. I try to do that. But, most of the time, it is stretched out a bit more, especially the years that I had so many hospitalizations. I am grateful that the last year or so has been better. This is one thing that I feel like I need to focus on.

      This is an excellent conversation, and I appreciate all of the tips. Only a few minor cavities are always good when you have had extensive dental work in the past. Stay on top of it like you are and I am sure that you will be happy and so will your dental team!

    • #26090
      Janet Blumenshine

      I have scleroderma and PAH with dry mouth, etc. I use Walgreen’s dry mouth rinse twice a day and chew gum in between….Mentos Always White. It is sugarfree with Xyitol and also is small. The last 6 months I have been chewing it at night which really helps. It sticks to my teeth enough so it doesn’t get lost or swallowed. If my mouth does get dry in the night, I loosen the gum and chew it a little I haven’t asked my dentist about chewing at night, but will next month. This is just what I do which really seems to help me. Maybe choking could be a problem…I don’t know.

    • #26114
      Margie Novak

      I hear all of you with regard to the dentist and teeth. Used to go regularly for cleaning and fillings but I never liked the dentist (and she was good) but wasn’t one of my favorite doctors to visit. But I still went and did okay then PH happened and my teeth got put on the “back burner”! Between the oxygen, using the Bi-Pap machine at night and medication they just became worse with cavities or breaking. Luckily they are not my front teeth and I can still chew things! But, with everything else I pay and have to deal with….. they are still on the back burner. Last year I had an infected tooth and had to be admitted to the hospital to have it pulled. The oral surgeon didn’t even want to look at it… told me to just go to a hospital to deal with it! And I too use things for dry mouth. So, I hear all of you and can sympathize! But, we hang in there and do the best we can!!! take care and happy 4th (P.S. I have never eaten corn on the cob on the cob ==== I have always cut it so that I don’t miss!!!

    • #26174
      Jimi Mcintosh

      Like Jen the high dose of diuretics have taken a toll on dental health. Along with the Cpap, and oxygen mouth is constantly dry. Dentist has mentioned implants, but not certain of long term benefit

    • #26186
      Colleen Steele

      I have read through all of your messages and I’m knocking wood that so far, my son hasn’t had any major teeth or gum issues. It surprises me because he was on oxygen for so long and taking diuretics both post and pre-transplant. To be honest he doesn’t really take as good care of his teeth as he should yet his brother who is obsessive about it, does. Our dentist said he hears the same complaint from a lot of people. Some people are just lucky and have good teeth and gums that hold up under any condition. Cullen has a lot of eye and ear problems though so I think he has the right to celebrate this one thing that doesn’t give him issues.

      I never hear him complain about dry mouth. He has to drink 2.5 liters of water a day due to kidney disease so maybe that helps? I will have to ask him if he experiences that symptom but has just never mentioned it.

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