Badges (1)

About

Member has chosen to not make this information public.

Groups (1)

Pages

Member not yet following any Pages.

Posts (15)

Aug 19, 2018 · Burning Mouth Syndrome & possible loss of teeth in Just Want to Talk

Thx for responding… sounds like the worst nightmare. Questions: how did your dentist connect this to the BMS? e.g. do you have reflux and therefore high acidity in your mouth? Is there a test for that? Or did you ever use a clonazepam rinse? (I have for a few yrs. and wonder if that could contribute? I lost the 2 due to absesses which can happen w/out having BMS. Dunno maybe it's too late to do anything to stop it. Just know dentures/bridges not an option w/burning & gums always so sore. Can't imagine spending all that $$ (scheduled to have implant for 1st one lost)- $3000 and suppose that just contributes to the pain?? This is a living hell– I don't know how you're coping but more and more I just feel like giving up.

Aug 18, 2018 · Burning Mouth Syndrome & possible loss of teeth in Just Want to Talk

Have any of you experienced teeth loss as a direct result of BMS? I have seen numerous dentists and an oral med specialist and nobody can give me any definitive info on this. On my facebook group, one person lost 8 teeth, another 12 allegedly related to BMS. I have just had 2 extractions and am concerned about more to follow. My present dentist sees no connection. Does anybody have info on this subject. Thx in advance for anything you can share.

Maggie 45

Aug 18, 2017 · burning mouth syndrome very severe in Just Want to Talk

Hi Lisa,
Appreciate your checking in on us. Update: found a Dr. S. Elad in Rochester, NY who is a specialist in Oral Med. (BMS) and has me trying a soluble form of clonazepam (.1) which I take (1 tsp) 2 x a day as a mouth rinse. Been trying it for a couple of weeks- mixed results- some days seems to calm the burning; other days, exacerbates the dry mouth & lips. Also seeing a psychologist who does cognitive behavioral therapy so will see how that goes. Biggest frustration is finding a dentist who is amenable to learning something new and not be defensive about what he doesn’t know, i.e. the thin wafer plates a dentist made for connielaine who has been a tremendous help and support to me. And lastly, not sleeping well, don’t know what that’s about but it sure does increase the pain in the day. Hope all of you are continuing to hang in there, God Bless- thoughts & prayers to all suffering with this.

Maggie45

Jul 22, 2017 · burning mouth syndrome very severe in Just Want to Talk

Hi Connie,
I know I’ve asked you this before, but I am having no success after seeing numerous dentists about these “bite plates.” They have no idea what I am talking about and look at me like I have 3 heads. Is there any way the dentist who provides you with these would be able to share with you with specifics (maybe in “dentist talk,”- like the exact material he uses and how exactly they are placed, etc. so that I could better explain them to my present dentist? This would be of immense help. I am not doing well and finding foods I could eat a year ago, burn my mouth badly now. Drs. here keep wanting me to see shrinks (whom I’ve seen plenty of to no avail). I am so tired of them not believing that there are other people with this condition who are actually finding some relief without taking a pill.

Thanks in advance for whatever you can do. Blessings to you all- I so admire how you hang in there and are always willing to share.

Maggie45

May 21, 2017 · burning mouth syndrome very severe in Just Want to Talk

Connielaine,
Thank you so much for getting back to me. I will take all the info you shared with me and bring it to my next app’t with a new dentist I’m seeing in June who can hopefully help with creating a bite plate as you’ve described it. I’ll also be contacting a Dr. Andres Pinto from Case Western who was recommended to me by a friend in NJ who is a dentist and has heard of him as someone who may also be able and willing to try to help with this. Will let you know how I make out.

Do want to share with you all that I did meet with an hypnotist in Rochester NY who was very empathetic and helpful.. he put me a most restful state of mind and made a CD of the session with me so I could use it as needed- I’ve done just that and it does bring relief even if not lasting. So important to find people who “get this condition.” I find one of the hardest parts is to socialize (over food) with people who even though they say understand, obviously don’t. This is something the fellow from Rochester said I need to work on-went out yesterday to share in a graduation party (over food) found I could eat nothing without incurring pain and had a mild meltdown… got back in control and stayed at the party but it was all so difficult being around people who don’t understand what you’re experiencing even though they are well intendioned.

Have any of you ever gotten together to actually meet each other somewhere? I would love to know if that is a possibility?
Also, I too am having difficulty contacting you all in the most expedient way. That being said would you mind passing this message along to sheetrock0131- as you, she’s been so kind in her many responses and sharing of thoughts.

Again, my thoughts and blessings to all of you; so impressed by those of you who have been coping with this for years- just 2 yrs. in myself and it feels like an eternity- the isolation that comes with this is devastating.

May 15, 2017 · burning mouth syndrome very severe in Just Want to Talk

Hi Connielaine,

I know it has been some time since I’ve communicated- mostly because I am so discouraged and disheartened by all the dentists and neurologists I’ve seen that can’t help- and don’t seem interested in trying. I am still trying to find someone locally who could make the bite guards you described but when I show them what you wrote they look at me like I’m crazy. I know this is a long shot but if you are still in touch with the person who did this for you, could you get his email and find out if he’s o.k. with someone from the Buffalo area (assuming I can find someone) contacting him to learn more about how he did this, i.e what is the material he used to make the plates. Again, as always anything you could do would be greatly appreciated. I hope you are all doing better; I have no real good days, just occasional pain free moments which I relish. I just can’t imagine spending the rest of my life living with the never ending pain. Blessings to all,

Maggie45

Feb 27, 2017 · burning mouth syndrome very severe in Just Want to Talk

Connielaine,
So sorry to hear after such a long time, no relief…. I have no idea how you & others have endured this long; only 2 yrs. with this, and I can’t imagine my future. It is beyond depressing. So I feel a little silly suggesting anything but you may want to check in with Lauren- I followed up on her experience with lazer treatment (have had only one to date) and I think I do notice less intense pain/burning- that’s the good news. Downside (and I don’t know if this is part of your condition but it’s a big one for me) is I believe it has adversely affected my taste which is pretty much non-existent anyway. But I am going to run this by my dentist and see what he thinks- it is a relief not having that burning 24/7 but I am nervous about now not being able to taste the few things I’ve been able to in the past.
I am still trying to pursue the hypnosis (have you tried that?) but living in Buffalo (the most non progressive medical community imaginable) I am going to have to go out of the area and pay for it out of pocket.

I think of all of you suffering with this and you are in my prayers. I think one of the worst aspects is feeling invisible- I certainly don’t go around telling everybody about it but sadly many of those who know just don’t seem to “get it,” and I find that incredibly frustrating and alienating. I’ve gone from an optimistic extrovert to prefer being alone with the pain and my thoughts which go very dark often and that scares me. No luck with shrinks- I have found them to be some of the worst listeners and offenders.

Take care- I hope knowing there are others thinking about you helps. This site has been a God-send.

Maggie45

Feb 10, 2017 · burning mouth syndrome,or bms in Just Want to Talk

Hi Pattty,

Thanks for getting back to me about the Lamotrigine- I thought it might be causing me nausea that I’ve been experiencing since starting it but I’ve now started taking it with food at lunch (the last real meal I can seem to eat lately)- which brings me to my next question for you- what are you able to eat? After being given chlorhexidine to help with my dry mouth- not only did the burning start up but I also lost my sense of taste. Foods I was able to eat a year no longer are bearable- I am living off a oatmeal, eggs; no fruits except an apple and most veggies taste awful as does meat. I can only drink water. Even protein smoothies are not going down well. Is this typical of this condition? I am so afraid if I ask my GI Dr. he will want to do another endoscopy -he didn’t do the first one where this incompetent forced an instrument down my tortuous, i.e. twisted esophagus which was the start of this on-going nightmare. As a result, I am terrified of even going to an ENT Dr.- they don’t believe me when I tell them how painful it is when they examine my throat and spray it with a numbing agent- which only causes me additional pain after it wears off. I am so tired of them treating me like I’m crazy.. I can’t tell you how often I think of you- and you are in my prayers because I can’t imagine how you have coped all these years you’ve had to deal with it.

Thank you again.

Maggie 45