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Hey everybody,

I want to reply to some other posts, but as my brain comes in and out of working like it should, i wanted to ask this right quick. Do any of you have issues with cavaties and tooth decay more so than would should be? I use rembrandt, always have; i take excellent care of my teeth, floss like i should, etc. I go to the dentist yearly for checkups and in the last several years it's been one cavity after another and now i have 5 different holes in my teeth that progressed rather rapidly. I just don't know if others have this problem. I don't eat tons of sweets, at least not enough to cause all this.

I go to the dentist wed to get them filled. I will be asking for the numbing med without whatever it is that races the heart. Then right after the dentist, i go for my first heart specialist appt..... that might be a good thing if getting my teeth filled may cause my heart to race and then going straight to the heart doc immediately after.

much thanks

hilbiligrl

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Hello,

What do you drink for all your fluids? Are you drinking things with a high sugar content?

In addition it sounds like you might need to use a mouthwash like ACT that has fluoride. ACT helps to strengthen teeth. ACT measures the amount they want you to use. You use it once a day. I use it right before bed because you cannot have anything to eat or drink for 30 minutes. I would also ask for fluoride twice a year when you have your teeth cleaned.

There are some studies recommending that you chew sugar free gum to help prevent tooth decay. (I saw an interview with one of the dental professors from the UNC Dental School talk about these studies.) But I know of people who chew sugar free gum with a lot of tooth decay.

Your dentist should be able to make some recommendations.

I hope this helps.

Hope for All

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Hope for all ~

i usually will drink gatorade, water; every now and then mt. dew and tea, but no where near enough that it should start decaying this rapidly this badly. I was asking hubby the other day if there was such a thing that would strengthened my teeth, I never though of that mouthwash at all.... indeed it is something i need to invest in. And my dentist, i will definitely be asking about this come wednesday. I have always tended to have worse teeth compared to others, as far as cavities, etc.... but wow, just year ago it was a clean bill and now this. And im a little ocd about my teeth, so i brush and floss alot and am always aware of any cavities..... About 3 months ago there was just one tooth broke off, and now all the sudden im finding 4 other holes in different teeth. And i take plenty of vitamins.

Angelika ~

I haven't had any steroids, actually, i can't recal that I ever have. Although, i was going through some intense stressful time for a whole year that put me into a bedridden state for over a year... i wonder if all that stress can cause this?

thanks!

hilbiligrl

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Do you have Ehlers-Danlos along with PoTS? It can cause significant dental decay.

I have so many cavities every time I go to the dentist.

Definitely get the numbing med without epinephrine. Also if the dentist uses a pump to give you the numbing med, that will help a lot.

Babette

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Do you have Ehlers-Danlos along with PoTS? It can cause significant dental decay.

I have so many cavities every time I go to the dentist.

Definitely get the numbing med without epinephrine. Also if the dentist uses a pump to give you the numbing med, that will help a lot.

Babette

hello mdcountrygirl.... looks like we are both from the country :)

I have read about ED on here and looked it up and i suspect it is possible that i could have it. Along with alot of the traits they describe, including the hypermobility; it also mentions severe muscle weakness which is mostly how i would describe my exhaustion feeling in a severe episode. (when first describing my episodes years ago, i always referred to them as 'weak spells', but catastrophic ones..... its a different feeling than 'fatigue' in my book. I had read about gum disease maybe, or something to do with the gums and i wandered then, if that could be the reason why my teeth seem to rot ever so quickly.

I am just now starting a regime of doctors. I just fired my family doc of 10 years, whom I was a close friend with, our children went to private school together, and submitted my case to a rare case doc in my area, who took 6 weeks to review my 8 year illness mystery and accepted me. He is well aware of me being 'diagnosed' with autonomic dysfunction.... soooo.... my first appt with him is jan 10th. (He is well know in the area for taking on rare cases, and he is also a professor out our local college of medicine and well respected.) Vanderbilt's er unit is who made an 'er diagnosis' of autonomic dysfunction. After almost a year of being completely bedridden, my twin sis drove me 6 hours to vanderbilt's er; because no specialist or doctor or any conventional protocol testing would show anything and no one would help me here. So... my first appt with Dr. Raj at the autonomic clinic is in a month for autonomic testing. And I have my first heart specialist appt on wed this week.

Therefore, i havent been tested for ED and right now, im compiling some notes to take to all three docs, and this will be included no doubt. We live in an area were there is a medical school and a pharmacy school within 20 mins from me. Our heart center is ranked in the top 10 of the US (so the banner and advertisement says)... yet only 2 heart docs have heard of autonomic dysfunction and they only acknowledge the electrical aspects of the heart with this disease.... no one else i talk to has even heard of it. This is one reason why i fired my doc: he/she didn't believe it existed and refused to send me to a heart doctor after repeated requests that i even sent by faxes too. I have govt insurance, so to see a heart doc, i have to have a prim doc to refer me, however, luck would have it that I ran into an old colleague of mine and he works in the heart center's research dept and knew of autonomic dysfunction and that only 2 heart docs knew of and that they also consult with Dr. Raj and the Vanderbilt autunomic unit quiet often. He got me an appt by pulling a few strings, without needing a referral.

So.... im crossing my fingers that this 'team' of docs i have gathered together, including vanderbilt, will be able to get these diagnoses on the chart. It looks like i will be the poster child for this disease in my very 'medical' community who knows nothing of this. Plus i'll be getting an appt with another neuro again, but it wont be the first one i've seen, as i've seen a few.

Lol... i think im having a brain spasm, cuz i think i wrote a little more than needed....

thanks

hilbiligrl

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Good luck at the dentist, I hope all goes smoothly.I go every six months so I can find a problem while it is small. I use Sensodyne ProNamael. REALLY good toothpaste. A Sonicare toothbrush too, floss of course. Do you have a Sonicare toothbrush?

Ask your dentist about the Pronamel. My dentist recommended it. I had used the reg. Sensodyne and she likes the Sensydyne Pronamel. I have read good things about it. I never use a whitening toothpaste. I have read it is not good if you use it too much, bad for enamel.

I do fine anytime I need med. for numbing with the reg. stuff. Hope all goes great for you! :)

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I have been vomiting a lot lately since developing gastroparesis. I had my teeth cleaned a few weeks ago & they were extremely sensitive. I told my hygienist about the vomiting & she recommended Act Restoring mouthwash. It is helping. You might try that.

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Just letting you know I'm in the same boat. My dentist is always perplexed and tells me it's the biology of my mouth? (For a while I was questioning that it was the dentist and not my teeth, but that's been ruled out). I always have cavaties and that's with regular brushing, flossing and fluoride rinse. I don't eat much sugar and I pretty much only drink water. It's very frustrating. I swear that it's somehow related to something else going on inside me, but have yet to prove that one. I feel your frustration!

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I have the same problem. Since my symptoms worsened over the last few years, I have had 5 root canals and my teeth never hurt, I would just wake up one morning with a tooth ache and boom need a root canal,. My dentist can not explain it either.

MAybe something with the sinus cavities, I am speculating, I have been trying to figure this out as well!

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If you don't mind, let us know how it goes after you see Dr. Raj. I really like the articles he has written - like Dr. Grubb, he seems to really understand the impact that POTS has on our lives. I'd be interested to know what it's like to have him as a doctor.

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thanks so much for all the replies. It always is reassuring when others have the same issues as I do, but at the same time, I hate hearing other people have to suffer the same ways I do too. I do think my teeth are a bit sensitive due to using rembrandt for quite a few years, cuz it's a mega whitening toothpaste and we all know they cause tooth sensitivity. It looks like I may have to sever my ties with Rembrandt and move on to the pronamel. I don't have a sonicare toothbrush, but i have used electric oral b's for years. It's weird cuz, last week i was just thinking about investing in a sonicare. Today, hopefully i'll be able to go out and my shopping list, lo and behold, has a sonicare and the ACT mouthwash and sensodyne toothpaste. Perhaps my enamel is indeed poor. I need to ask about the flouride as well. Oh my at the root canals i've had to have as well.... id rather give birth... as i hate, hate going to the dentist, i can't remain calm at all i hate it that bad!

And you bet I will post updates about Dr. Raj.! As, I'm very excited to share my journey with yal on here. I am excited to go, yet very scared that even yet, he will look at me like im half crazy. I guess i've went so long with so many negative tests over and over, that im afraid he'll say 'you have too many symptoms' or perhaps that he might not understand how i describe these.... Yet being in the dark for 8 years, and years of researching on the net, and after discovering this site, everything in me and of me KNOWS that i have at the very least POTS, most def autonomic dysfunction. When i left vanderbilt that day, i thought they were the ones that were crazy cuz here i am headed for pharmacy school and I had never heard of this before, and i do tons of research. It wasn't until i came here and spent a couple months just reading hundreds of posts on here and finally, after all these years, here are people who are describing me from top to bottom, inside out. So many posts here echo me.

Im interested also in my new doc.... his name is Dr. Reid Blackwelder and you can search for him in kingsport, tn area. I have even been able to watch some of his lectures at the medical school on the net. He's had some awards and articles wrote about him. I didn't think he would accept me as a patient once seeing my records and all my symptoms and clear tests... it took him 6 weeks to get back with me, when they initally told me it would take 2. After 3 weeks, i was sure he hadnt accepted me and was bummed cuz i knew he didnt accept patients anymore but would possibly consider very rare ones, i figured my chances were slim due to how unbelievable this disease is.... then 3 more weeks pass and i get a call...... I WAS SO SURPRISED, never expected it.... I was relieved that i was bawling on the phone to the nurse. She apologized it took that long, but she said i had a longer and more difficult case than others he has screened in the past. I have a lot of hope with him as he treats the whole person through all methods.... not only conventional but meditation, yoga, acupuncture, holistic, etc.... I'm glad he's willing to learn about this disease as we go along.... i just hope he's willing to include me upon treating me, as i know 'me' better than any doc out there.

I'm afraid i'll have it out with the local heart docs here though. My hubbs who has had heart failure for 6 years, (he's 56, im 33... together for 10 years) was once seen for years by one of the 2 heart specs that know about the dysautonomia. (this is in a heart center, also called cardiovascular associates, and they have at the very min 20 or more heart docs in this one group) And this particular doc has an ego the size of a mountain. He was gun hoe on a surgery that hubby didnt need, and we had major issues with meds he prescribed (coreg at 100 mg a day??? and lipitor scare). Anyways, my hubbs and i got into with him on several occassions, to finally the point that hubby just won't go back. So... i already know im dealing with some rather close minded docs in that group, but that's my only option for heart docs that are local. And, when i had the TTT done a month or two ago by this heart group, they insisted that dysautonmia only affects the electrical activity in the heart and that it does nothing other than that.... i couldn't even get through to him all the symptoms, he just said my symptoms weren't plausible and had nothing to do with dys..... he insisted again, dys ONLY affects the heart and nothing else about the body..... sigh..... what we have to deal with. Looks like i'll have a gay ol time with them.

So sorry i talk to much on here... i guess it's the fact that i have held on to so many conversations on here beacuze it has been my life string and still is... I lean on this forum like my life is on stake, and well, i guess it is! This forum is what has helped me get through the utter devastation of all this since i found it. Everyone here unknowingly has helped me get past that dark hopelessness that i had no mental capacity to get past and im so glad im not alone anymore. Oh my, i would prob be locked up in a mental ward right now if it wasn't for this forum, or worse. So, i guess im hoping to help others who where in the same hopeless state i was in.

Yes, i will definitely let you guys know how all my appts go!

hope yal have a good day!

hilbiligrl

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Hey,

Yes I have teeth problems I was wondering where the holes were?, I have some along the gum line more like indents and was told its because I have brushed to hard and wore away the enamel and they could fill them. I have no courage to let any doc give me any meds yet! I need lots of work done and I need to just get over my fears before it starts affecting my health...

Good Luck with your appointments:)

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Hey,

Yes I have teeth problems I was wondering where the holes were?, I have some along the gum line more like indents and was told its because I have brushed to hard and wore away the enamel and they could fill them. I have no courage to let any doc give me any meds yet! I need lots of work done and I need to just get over my fears before it starts affecting my health...

Good Luck with your appointments:)

Hi Lissy!

I was just thinking were the holes are in my teeth last night. It's weird, cuz each one has started from where the gum and teeth meet. When i was in high school, the dentist put a sealant in my teeth because he stated they were deeper and more rigid than others at the top, therefore, easier for cavities. So, one day i am eating and one of those sealed molars just fell apart and i see the decay on the inside, but all round that tooth theres was no sign of decay. I can't figure out how it formed!

The other teeth are holes that seem to have came out of nowhere and since i always have teeth that seem to break off easy, im getting them filled asap.... but scared at the same time. I wish i had a valium to take right before. I will insist on the pump that you guys have mentioned for the numbing med. Do you guys know if it costs more? As, i have no dental and all this is out of pocket... ugh.

thanks again!

hilbiligrl

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I'm unsure if it costs more a quick call would help you figure the price difference. You know I also recently seen a program on T.V about lazer dentistry no meds needed and thought this would be great option for all us suffers I am looking online for more informaton.

Lissy

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The pump that is used to administer the numbing medicine is standard at my dentist's office so it doesn't cost more there. It works by pumping the medicine into your gum very slowly (much slower than the denist can do with a syringe). Since switching to the dentist with this pump, I have had much better pain control and less adrenaline surges. By the way, he works at our local health department and treats me so much better than any other independent dentist I've been to. He adjusts my seat to where I am less likely to have symptoms even if it means he has to stand to perform the work. He also read the entire packet of paperwork I gave him on Pots and Ehlers-Danlos before he ever started working on me.

Babette

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I also have a long history of outrageous numbers of cavities despite doing all the stuff you're supposed to do. This last time, the dentist said the decay "looked like the type that is associated with dry mouth." Since dry mouth can be a symptom of dysautonomia, I guess the cavities could be indirectly related to that condition. Also a lot of the meds we take can cause dry mouth as a side effect. Good luck!

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I second the thought about Ehlers Danlos. I have that too and it can affect your teeth. My doc told me to use the pronamal too, but it made the inside of my mouth peel out. Any of the whitening toothpaste does that to me. He said that I could reenamal my teeth by using it. I had been staying away from floride and my teeth started to crack and break. I know, they claim that floride is so bad for you. But, for me when I started back using it - my teeth got a whole lot stronger. I believe the floride has restrengthened my teeth and the few little cavities we were watching, he didn't say anything about this last time I went to him. He felt like I could reenamal them without fillings. It must have worked. I will over brush my teeth unless I use an electric toothbrush. I had a sonicare and loved it - it's long gone. Right now using a spin brush with the battery from Crest. I'm also using the Crest Cinnamon toothpaste - it's working well for me.

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I have the same problems that you and giftcreations have. I don't feel like I'm having any problems, and then all of a sudden I need a root canal. I am waiting right now to get off my Coumadin so I can go and get 3 root canals and crowns done. I've been like this for a long time - all but the 6 teeth in my bottom front of my 22 teeth have crowns. Very expensive, too!

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Hey all,

thanks so much for the replies and the ones that keep coming too. It has helped bring down my panic about my teeth. I am most definitely going to insist i be screened/tested for ED as well as connective tissue disorders.

My dentist appt has been rescheduled 3 times now.... the first time we had an ice storm that shut down most of the city for one day, so my dentist called and cancelled.... the 2nd time, was about 4 inches of snow and couldnt make it out of my driveway, so i rescheduled... then yesterday, a substation had an electrical fire and small area was without power most the day, included my dentist. I am beginning to think, maybe God is trying to intervene here and that i had better discuss the teeth/heart issue with my new primary doc on the 10th before rescheduling again. (hoping my new doc will be openminded to all this aobut me)

I did go out and buy the act, proenamel and sonicare. Wow! The first brush and rinsing witt act and i could tell a huge difference! I didnt think it would make such a difference in one brushing/rinsing, but wow, wish i had realized this years ago, perhaps i wouldnt have to have so many teeth issues. Im hoping it will ward off a root canal on one of the teeth until they get me in again.

My heart doc appt yesterday was crap and im going to start a new thread, as it was a bit absurd as to how i was treated.... as usual.

thanks everyone.... and when i get back to my dentist, very very soon... i'll let yall know how it goes!

I appreciate each and everyone of you!

many blessings,

hilbiligrl

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