Feeling sorry for myself...need to vent....

Update: the burning is probably 80% better today. I'm not sure if it's the Klonopin or the mouth rinse Mycostatin or whatever it is called. I have just a faint sensation of burning on my tongue and on my upper gums around my front teeth and this is the worst time of day for it all.

The bad news is I was up with a severe case of GERD and a migraine last night. The vitamins probably hit my tummy hard...maybe the rinse also. My stomach is really sensitive to anything new.

But anything is good. It's great to have some relief.

Just another update...things continue to get better...I had a virtually burn free day yesterday!

I'm still doing the rinse although maybe only a couple of times a day as I forget.

Am still on the .5 Klonopin at 4 pm.

I take the multivitamin and B complex vitamin in the morning.

Another person told me to take a B12 siblingual tablet (500mcg) once a day which I have also started.

I also heard that Protonix (which I take for GERD) can deplete your body of B vitamins and cause burning mouth. Have no idea if that is true or not.

I have no idea what is helping mine but it is definitely better. I can only hope it stays this way or at least stays bearable.

I have a couple more things in my arsenal...an estrogen test and changing my toothpaste to a milder kind. I'll add these in soon.

Thanks to all who have supported me here. It has helped greatly. I will keep you updated. :)

Granny, things are going much better.

My pain and burning is almost totally gone. I am praying that it stays this way or is at least at a bearable level.

I have no idea which solution is giving me relief but I don't care.

love and hugs to you all,

sophie

Sophie, I just read through your thread, I'm SO sorry to hear about your troubles!  I have back pain at this time, but I had severe TMJ before, I understand mouth pain a good bit, so with your description, I was truly able to understand your story, OUCH!!  I'm sorry!  And seriously, I've heard this from MANY people too, mouth pain is one of the WORST pains a person can go through!  I actually just posted on another thread about my past problems with TMJ, weird to think about after all these years!  I still get the pain, but not as bad, I get bad migraines still, but I'm thinking it's from pain and stress, but the pain that I went through from the TMJ (from a doctor dislocating my jaw during wisdom teeth extraction (which I had 5 of, believe it or not!) and they never told me they did this, I found out years later when I saw a Maxiofacial!) that it used to keep me up at night, and I would moan and cry in SUCH pain, and I have a HIGH tolerance to pain!  I'm SO sorry that you have to go through such a thing!

And definitely, keep that sense of humor!!  Laughter is the best medicine, unless you're laughing so hard it hurts!!  LOL!!  Talking trash cans, that's great!  I'm glad that you are better from that though too!  I used to date a guy that was bipolar, and it's very hard to go through, I'm sorry!  Vent all you want, that is why we are ALL here, we need some help, we need some support, and we need relief!!  You ARE in the right place!!

Sounds to me that the B Vitamin was your problem, I'm not a doc, but I have medical background, not to say I'm right, whatsoever!!  But from the sounds of it, if you were deficient in B Vits, taking them would start immediately because you process Vits pretty quickly!  And that would bring your levels of B back up quickly!!  So, that could be part of the solution there!  But continue to follow your docs instuctions and best wishes for a full recovery of relief!  Thanks for sharing your story!!  BMS is not that uncommon, so please don't feel weird or bad about talking about it or venting, and if people don't know, well, more of a chance to educate people on it, so they understand!  People don't really truly understand chronic pain though, even I knew what it was, but it's just a word and symptom in the medical profession, they've never experienced that kind of pain before, or truly know what it means to have CP!!  So, keep your head up, I know it's very hard, but think positively, no matter what!!  Positivity is VERY helpful!  Once you get the hang of it, you'll enjoy life a little more, though you can't always enjoy what you used to!!  LOL!

Best wishes to you and all, and hope that relief isn't far from reach!!

Thanks for all the kind words Dragoness. Yes, I am wondering if the B vitamins aren't a big part of the problem. Late this afternoon I was getting some tingling/ burning starting up on the roof of my mouth/ gums and then I remembered I had not taken my Klonopin at 4 pm as directed. I popped it and things seem better now.

Tom, I was on oral antibiotics a couple of times for urinary infections in the last few months. Normally I get yeast infections at the other end (excuse the graphicness here!) , not in the mouth from antibiotics. The burning had been going on long before the antibiotics appeared on the scene. However, the Nystantin mouth rinse did seem to give me some immediate relief.

I am starting to suspect my BMS came from many different sources which came together to form a nasty case of it.
I believe I am peri or menopausal which is messing with my estrogen levels.
I believe the Protonix may have dropped my B vitamins.
I believe my severe weight loss due to my esophagus surgery may have caused a vitamin deficiency which caused some of it.
I believe I may have had some thrush going.
I believe my serious bipolar episode and resulting depression threw my brain chemicals into a shock and may have damaged some nerve receptors. (this all started around that time).
I believe the serious heavy onslaught of unrelenting psych meds may have aggravated my mouth nerves.
I believe the stress of life and especially of this chronic pain has resulting in a bad cycle of making it all worse.

I'm very lucky to be getting some relief.

You all have been wonderful. I couldn't have gotten this far alone. People in "real life" don't get it.

A quickie update...

On bipap now - daughter says I 'sleep quicker and less restless' - well, the proof will be in the pudding - if I don't have another pneumonia at least by September, I'll have gone longer than I have since september '07.

I'm amazed at how well this Medtronic pain pump is working! I had it refilled and tweaked a few weeks ago (just in the nick of time - a week later I was in the hospital, and refilling would have been a real problem - the pain clinic is not connected with my regular hospital. I am now on 8 mg/day of morphine (was on 100 mics fentanyl, and 120 mg oral morphine), and, well, I refilled my dilaudid (4 mg) in April of this year, and now I need to refill 'em again - they're written for 4/day...I usually take ONE in the morning, and maybe, maybe one at night, depending upon my activity. I think there was ONE day that I took 3. Matter of fact, I have to drive back and get a new script - I didn't realize that they expired in 60 days! I'm finding myself being able to do more and more things back wise, at least (just get pain under control and lungs start harassing me :/). I stood at the kitchen sink for over 30 min cleaning up the area (before, I could stand for maybe 5 min, then I'd have to sit - sciatica like pain would shoot down my legs, and my back would be so painful, I'd have to sit. Even walking short distances would bring on extreme pain - I'd have to sit down wherever I was. Before the pump, I can remember one time at church on Wed walking down the hall - I had to stop and lean against the wall numerous times to just get to the classroom. I have a rolling walker, and rather become dependent upon it, I'm going to USE it to take longer and longer walks (I discovered by using it (or a shopping cart) I can lean on it and keep the pain at bay, or when the pain hits after a half our or so, it supports my back and keeps me from having to sit or lay down to releive the pain.

Gina

I know this is an old thread but Martha if you are out there I'm going through a similar thing with the mouth burning.

I have GERD but also have a burning throat, mouth, and tongue. Although mine, I can see visible signs of redness on my tongue and even my lips.

I've seen many doctors and they don't know what it is as they say your mouth looks fine. But we know that burning feeling.

Let me know how you are doing and what you are doing to make yourself feel better.

Thanks.

Max