I'm headed for my lip biopsy in a few minutes. Just found this forum this morning. I'm wondering if you can compare your mouth symptoms to mine. For three months now (and it began nearly overnight) I've had a sandpapery feeling in my upper mouth and tongue. My gums around my upper teeth and the teeth themselves burn like acid is surrounding them. I have saliva still, but it is slowly diminishing. My symptoms are mainly in my upper mouth and the friction is unbearable. It doesn't always feel "dry" exactly, like sometimes my mouth is moist but there is a pronounced lack of viscosity, no slippery quality to my saliva, causing the friction. And when my tongue touches my teeth they feel electricuted, like licking a 9 volt battery as a kid!!! (oh, am I the only one who did that???)
I also have painful lumps in the roof of my mouth. I've been to 7 docs now all who tell me I'm stressed out, but no clue otherwise. One doc treated me for Shingles and another for Pemphigus, though I never had any blisters in my mouth or anyplace else. No treatments worked. And I've been using Evoxac and Numoisyn for the dryness and they don't work. Neither does Biotene, Oasis, Xylitol gum, lemon drops, etc. NOTHING helps this rough sandpapery feeling.
Does anyone else have similar feeling in their mouth?? I know everyone says "dry mouth" but is this what yours feels like? It's ruining my life very quicky!!!! And I'm terrified to have this biopsy done!! I'm a huge wimp!!!
Any suggestions would be greatly appreciated!!!
The Following User Says Thank You to mountainlvr For This Useful Post: kate327 (06-29-2012)
I don't have those symptoms. I just feel thick like I have something in my mouth. I also do a sucking noise like I am try to create saliva by putting my tongue against the back of my bottom teeth and suck. It makes my husbnd nuts.
Please let me know about the lip biopsy. I am going to end up having one
Well, I didn't love the biopsy, but believe me I'M A BABY. And they also biopsied the lump in the roof of my mouth. He did "punch biopsies". The procedure wasn't too bad, the worst was the sound of it, but today it hurts. A lot. But they gave me Percocet and it really helps. Hopefully they'll have my results in the next few days.
My mouth symptoms are so strange I can't find anyone who has the same feeling.
Good luck if you have the biopsy done!! Thanks for responding!
mountainlvr, glad you got through it ok. I read they usually do 5 glands. True?
I am a big baby too, the older I get the worse I am. I suppose I can get through a lip biopsy if I had upper and lower jaw surgery. I just had a breast biopsy last week and it wasn't too bad. Of course I was put out as they had to take out the ducts under the nipple. Ouch. but it was benign.
I think I need to find out for sure if I have the sjogrens. I feel like I am going downhill with the symptoms increasing. I will wait until I have my brain scan and the results which are scheduled for Thursday.
Hope you are feeling better.
I have every one of your symptoms, except for the bumps. Every doctor and dentist I have seen want to call it burning mouth syndrom. I have tried so many different treatments and not one has helped. I see that your post as from 2009. Do you still have this problem?
Yes, I do still have it. It's been a really long battle, and a painful one. I was finally put on a few different medications, and have found a combination that helps. I take Trileptal and Lyrica. One helps more for the pain in the roof of my mouth, the other more for the sandpapery, friction thing. As far as those particular symptoms go, when I finally got on the right medications I realized I was making saliva fine all along, it was just the FEELING of not having any. If I am even late on my dose of medication by an hour or so, it all comes back fast!! Sometimes the symptoms break through anyway and I feel that weird, electric, dry scratchy feeling again and I CANT STAND IT!! I can't believe I lived with it for as long as I did. I finally went to a neurologist who said it was a nerve misfiring, or rather a bundle of nerves, causing both the sensation in my mouth and the pain in my palate. Fine, but no one can explain the lumps!! So I'm still skeptical that that's all it is. But either way, the medications help me manage my life. It seems I will be on them for the rest of my life which is a daunting and depressing reality, but I try not to think about it too often. If you haven't already, please see a neurologist!!!! They can probably help you with some simple medication!!! I feel for you, friend, it is something that you cannot take your attention off of. Like a fork in the eye!!!! Please let me know what you come up with. Whether or not it really is burning mouth, I urge you to pester a neurologist about it and at least try some medications for neuropathic pain. That's what they call it for me.
Keep me posted. I'm interested to see what they tell you. Good luck!!!
Last edited by moderator2; 12-06-2010 at 05:52 AM.
I have also taken a variety of drugs..some work for a while, than stop. Most recently, I took Clonazepam 1MG, prescribed by a neuroligist andPilocarpine 5MG. The combination worked wonderfully for two weeks...no pain at all. Than, like clockwork, they stopped. The Clonazepam made me pretty loopy and off balance, but I was so glad not to be in pain, I didn't care. I have been taking 3 Gabapentin daily for over a year, supposedly for the nerve endings. My insurance company won't pay for Lyrica. Among the other things I've tried are B complex, L-Lysine, antibiotics, Nystatin, Lidocaine, Alprzaolam, benadryl mixed with malox, perioxide and water, chloriterdine oral rinse, I use a nedi pot for nasal rinse, Biotine rinse and toothpaste and probably the most effective for pain - Tabasco..4 drops and a fourth cup of water..just gargle. Every doctor and dentist I have seen, and there have been many, want to call this burning mouth syndrom and give me the same explanation as you got. I just can't believe this is true...there must be a way to find the cause and find a way to live with it. I am now wondering is it's Sjogren's Syndrom. They say you should see a Rheumatologist for that. My neurologist suggested I try a Endocrinologist. I am at a loss. And did I mention that this has been going on for a year and a half. Thanks for responding. I'm sorry to find somebody with my symptoms, but glad for your input and support. Any other ideas would be greatly appreciated.
Last edited by hawkins6; 12-01-2010 at 01:57 PM.
Wow! You are reading directly from my bathroom cabinet! 'All those things are under there because they DIDN'T HELP! Funny you said tobasco, for me it was coctail onions, the strong vinegar helped make lots of slippery saliva that would feel good for a few minutes. You didn't mention the trileptal, have you tried it? Or Tegretol? I couldn't take Gabapentin, still have an entire bottle of the stuff I can't use. Same with the Tegretol. It worked okay, but the Trileptal is stronger I guess. Yeah, it's a shame most insurance companies don't cover Lyrica and there is no generic. (The patent doesn't expire till 2013!). I had the Sjogrens test, twice actually. I can tell you that unless your mouth is truly bone dry, it's most likely not Sjogrens. And according to my 3 neurologists (yes, 3!), Sjogrens doesn't usually cause the burning, weird mouth feeling we have. With true BMS it's supposed to affect the entire mouth, but mine is only in the upper half of my mouth, like underneath my tongue, and my bottom teeth/gums really aren't affected like the top. Oh, another thing...I was told that using Nystatin and things like it are actually bad as it removes the good bacteria in your mouth (if you don't have a mouth fungus for it to treat). And peroxide and all those things with peroxide in them also make it worse because they dry out your mouth, oh, and alchohol. It's amazing though, that when I found a medication combination that worked and didn't quit after a few weeks (like some I tried), all those things got packed away in my cabinet. I realized it wasn't a mouth problem per say, but a nerve problem causing mouth symptoms. You've probably done it, but you might want to google "anti-epileptic drugs to treat neuropathic pain". I'm probably telling you a bunch of stuff you've already found out during the course of your ordeal. Sorry if I am! Mine began in July of 2009, sounds like yours started about the same time!! Do you know what brought yours on? I don't have any explanation for mine, although I've gone nuts trying to figure it out. But the docs assure me that with neuropathic pain a nerve usually goes haywire for no reason at all, so I should eliminate the added stress of trying to figure it out, and beating myself up. The old "what did I do to cause this??". It's truly a horrible thing, all of this. I've been in so much pain before the meds, that I was having some VERY dark thoughts if you know what I mean. I'm curious, is yours mainly in the upper half of your mouth, or everywhere?? What are you taking right now for it??
Where do you live? I'm in Knoxville, TN. Please keep in touch. I'm so glad you found me, as you are the ONLY person I've found since this began that has the very same symptoms, not just the normal trigeminal neuralgia.
Hasn't this changed your sense of time? I used to live week by week, day by day. Now I live dose to dose, hour by hour. Very sad. I have twin 6 year olds who deserve more from me!!!
Yes, my pain is only on my upper teeth, gums, tongue. The bottom half of my mouth if fine. Mine starts (and I can actually feel it start) on the upper left back gums. I was so sure that it had to do with my teeth, despite what several dentists told me, that I had my furthest back molar pulled...no help...now the gums and hole where it was burn. I also had two filings in teeth further forward replaced thinking maybe it was the metal in the fillings. I do have a cap with a post inbetween the tooth removed and the ones filled, but the cost of having it pulled off and replaces has stopped me. Desperate? I have been/still am. Last year, in hopes that it had to do with my acid refux, I had a procedure to close the esphohex some...didn't make a difference. Maybe I better just accept the fact that it is BMS. Doesn't really matter whether it is BMS or Sjogrens...neither have a cure. I will ask my doctor about the drugs you mentioned. Perhaps they will work. I know what you mean about drugs working for a few weeks, than stopping. It's almost like the nerves get imune to the drug. I can't believe that for two weeks I was completely pain free and today (and the last few days) it burns worse than ever. The one form of relief that always works for me is chewing gum and eating. Of course, I'm gaining lbs and my cavities are falling out, but what else is there to do? I noted that you lived in Knoxville and from your name, must love the Smokies. I love that area also. My husband and I even spent 6 weeks in Pigeon Forge working at Dollywood a few years ago...in the good old days when my mouth didn't burn. We spend several weeks each year down the road from you in Crossville TN, but when the weather turns cold...like now...we head to SW Florida..Port Charlotte. How did you biopsy turn out? Don't you almost wish it would find something so you could put a label to your pain? I have had so many blood tests and each time I just hope they find something wrong...but they all come back normal. Yes, it helps to talk to somebody who is going through the same thing. It's hard to comphrehend the pain if you aren't experiencing it! Keep in touch
Nancy, Two more quick thoughts. I found that after two vodka tonics, my mouth actually feels better..not that I'm promoting that. Also, I'm sure you've read that as quickly as BMS starts, it stops. That should give us hope for the future. I've actually heard of people who have had it go away. I went to an ENT once, who told me he treated many patients with BMS. When I asked if he cured them he said "No, it just went away". Duh...I didn't keep my next appointment with him! When I call a doctor, I ask his receptionist if he has ever treated BMS and if he knows about it. It's amazing how many doctors and dentists are not aware of it. The last neurologist I went to actually left the room and looked up BMS on the computer...that's where he found the drug that worked for the last two weeks. He told me there was no need to come back, just take the drug for two weeks and I'd be all better! Another one down. I may well see every doctor in the county before I'm done.
Good morning, hope you had a good weekend without too much mouth frustration! (is that ever possible for us?) I was up tossing and turning last night thinking of all the things I wanted to tell you, but was too tired to get up and write just then. I hate to post a whole book on here, you know?
Happy Monday! Hope all is well and you are not in too much "discomfort today". Don't you just love that word, "discomfort"? That's what the doctors call it because they can't actually SEE what's hurting us!! Drive's me nuts!
Last edited by moderator2; 12-06-2010 at 05:52 AM.
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You give me chills when I read your messages, because I have had the very same experiences. You said it feels better when you eat, and before I got on the Trileptal it did for me too. Because I always had the sensation that my mouth was dry, I thought it felt better when I ate because you make more saliva when you eat. But after the medicine got up to even levels in my body, everything I thought made it worse or better just went away, well most of it. Like always feeling like it was dry, or burning or scratchy, or that my gums were raw or my teeth were loose. Oh, I too was determined to try whatever procedure I thought might possibly make it better. I actually begged my ENT to remove a small maxillary sinus cyst that I thought HAD to be the culprit since that was the only thing that kept showing up on the CT's and MRI's. But he wouldn't do it. And I begged the oral surgeons to cut open the roof of my mouth to see what was under these lumpy areas. But the wouldn't do that either. I almost went and had my metal fillings replaced but they insisted that wasn't going to help either. And I almost had my dentist make me a mouth guard, the kind that they use for invisalign but with the palate covered as well, like a retainer that covered my teeth and palate. My ins. wouldn't cover it and it was going to be too expensive. I wanted it because my gums hurt so bad when my tongue touched them that it felt like course sandpaper grinding away at them, and the roof of my mouth. I couldn't take it. I even went so far as covering my upper teeth, gums and palate with saran wrap to keep everything from touching, but then reconsidered as I was afraid I would inhale it and choke. And I was very suicidal for a while there. Lets just say I found Trileptal at the very last moment and it's a darn good thing I did!!! Then when that wasn't quite strong enough the Lyrica finished the job. Mostly. It still hurts some and I still have this bizarre tatse/feeling in my roof of my mouth and sides of my tongue. It's kind of a metallic sensation and taste. Like when, as a kid on a dare, we would like the prongs of a nine volt battery. Do you have any of that sensation? It's mostly when the sides of my tongue touch the roof of my mouth.
Oh yeah, I also thought maybe it was "silet reflux" and tried prescription anti reflux drugs (don't remember which ones, there were many) and that didn't help. And I was tested for heavy metals, went through the full 160 stick allergy panel (not an allergy in sight), and had a nerve block on the palatine nerve which was excruciating!!! I tried several of the anti-depressant drugs that they say help nerve pain with no luck. I have whole bottles of things I tried and couldn't take or didn't help. I could put our local pharmacy out of business! Instead they put us in the poor house! This whole nightmare has cost us nearly all the savings we have left after the economy put my husband in the red with his job (sales). So many of the tests weren't covered, not the specialists I've seen. I'm really surprised that no one has suggested to you that it's what they are treating me for, "neuropathic pain", which as I see it boils down to "non-visible, non-palpable patient-concocted phscologically-based possibly non-existant pain" that they need to put a title on so that you will have a diagnosis to cover their behinds for writing you a prescription so that you will leave their office and hopefully never return. But either way, I WAS finally given that diagnoses, and the medication that fits with it, and it WORKED!!!
I'm sure you know how much this has changed every single facet of my life. It's changed (and basically ruined) my overall health, my body, my family life, my ability to mother my daughters cabaply, my relationship with my husband, my overall quality of life of course, my ability to truly enjoy anything, my emotional and phychological state of mind, my faith in God, my trust in the medical field, our financial stability, and the list goes on and on. I rarely participate in anything fun anymore, as my pain controls everything I do every minute, and it completely consumes my thoughts. Also, all the drugs I've taken and the ones I take now have totally screwed up my ability to think straight, my memory, my energy level (of which I have nearly none anymore) my moods, my sex life (also down the toilet) and of course my body! NO ONE gets it. Everyone thinks that because they see me moving, breathing, with no broken bones or lesions, that I should be cured and get back to the old Nancy. Pick up right where I left off. No one understands that I will never be that person again and that it only makes it worse when they think that I should. The girls don't get why Mommy doesn't like to play Barbies with us anymore, or why she doesn't come eat lunch with us in the cafeteria, or join PTA like the other moms. My husband doesn't get why I'm cranky ALL the time or why I don't want to socialize, or travel to see his family, or cook or clean the house or go grocery shopping with all the gusto and enthusiasm that I used to. Or the BIG one.....why I don't want to go back to work. Truth is, the "illness" and the drugs have turned my mind and concentration and memory to such mush, that I'm literally terrified to go back. I know I won't be able to handle it physically, I've tried a few times, and I'm scared of how foolish I will look when I can't remember my tasks from one moment to the next, or when I need a calculator to add the simplist of things. Or most importantly, why I can't think straight for 10 whole minutes because my brain is consumed with my pain.
Can you relate to all of this?? I hope so. Perhaps yours hasn't fully destroyed your life like mine has, and I hope for you that it hasn't!!!!!!
I'm sorry for saying so much, I just really needed someone to say it all to for so long, someone who, in the remotest degree, can relate to it. My husband used to have some sympathy, in the beginning, but by about the 10th specialist and the 40th drug piled up in the "didn't work/can't take" drawer, he lost his compassion. He no longer asks how I feel, and if he catches me laying in the bed or rocking in pain he only asks "what's the matter with you?" And I want to slap him repeatedly, HARD, and scream...."where the *&^#@ have you been for the last 18 months?!!! THIS IS MY LIFE NOW!!!" But instead, I just cover up with the blanket and say, simply, "I don't feel good".
Hey, do you have any throbbing or headachy kind of feeling IN your roof of your mouth anywhere? I mean aside from the burning, raw sensation. I have that along with my burning. Just wondering.
Well, thanks for reading all this. That is if you madei it this far without just deleting it!! I would have written sooner but I needed some time to sit and be alone.
Hope you have some luck with some medicine really really soon!! My advice would be skip the Tegretol and go straight for the Trileptal if they will agree to it. And make sure you take it so that you always have a steady amount of it in your system. When I was taking my doses when the pain was bad enough it didn't work nearly as well as when I began strictly taking it at steady intervals. Oh, one more big question....Does your pain seem to magically go away when you are sleeping???? And then reappear sometime in the morning after you get up and move about? Mine does. But now I take my medicine like clockwork so it's always in my system and I'm doing much better. Oh, with the Trileptal it can lower your sodium levels, so if they give you that, make sure to ask about having regular sodium checks, and Trileptal levels. Mine bottomed out and I had to get it back up quickly, but it was fine.
Good luck my sister!!!!! Please write again when you can!!
Last edited by moderator2; 12-07-2010 at 08:16 PM.
I'll write more later, but I just read your post and can relate to a lot of it. But, when you are on the Lyrica and Trileptal, doesn't the pain and burning go away? I have been taking Lyrica 50 MG twice daily since Monday and I have prescription for Trileptak 300MG that I will take twice a day. Does that sound about right to you? Since this weekend, my mouth has been really painful. I've been chewing gum from the time I get up until I go to bed, than I just hope I fall alseep fast, so the pain goes away. Does it take a while for the Lyrica to build up in your system?
This BMS has really causes great financial strain on me also. I can hardly wait until my hubby gets the neurologist's bill...he'll go nuts. I did when I saw it online. Our insurance is pretty poor and doesn't cover a lot. Each time I look for another doctor or dentist to help me, I worry about the cost. Also, prescriptions are outrageously expensive for us. The Lyrica set us back some. And, of course, it's just like you say. If friends and family can't see any cuts or bruises, they assume all is well. I rarely talk about it because nobody understands or cares. My husband grew up with a hyprochonic mother (at least that's his story) and never was much of a sympathic person. I don't mention my pain to him usually, but if I do, his reaction is one of surprise...like, he thought I was OK all along. Sure...I'm just going to the doctors for fun and the pills...they're just like candy to me. When I was on the anti depressant...the one that the neurologist said would be my cure-all in two weeks..I was feeling (and acting according to a few friends) pretty weird...but my mouth didn't hurt. Do you think it's safe to take Zanax along with my new drug regemin? I was thinking of taking it around dinner, as that's when my mouth is in full bloom. And yes, it usually dies down when I sleep. In the morning, I'm good until about 10:30, so I try to get all my socializing and errands done before the pain sets in. I don't feel as I'm more forgetful or can't focus...of course, I am retired, so I don't have to be all the concentrated anymore. Not sure if I could work, what with chewing gum all day. Don't you find that you feel better if you get involved with projects and play with your kids? Sometimes I actually forget about the pain when I'm busy like that. At the risk of getting edited again, check out acid reflux on this board. There are others that are dealing with this problem and one guy who is convinced that most of those suffering from LPR, a type of acid reflux is really Laynegeal sensory neuropathy. I think he may be on to something. I know you've probably done this, but as a way to sooth your mouth, have your gargled with salt and water? I find that calms me down some. I also have a mouth guard...a cheap one that I bought at the drugstore. I use it before I go to sleep. I find that if my upper teeth don't touch my tongue etc, the pain is almost gone...I'm sure it's safer than plastic wrap! Sorry this post is so scattered...I just wanted to let you know I read yours and can relate. Don't give up on your hubby or kids...they need you. Don't let this BMS ruin your life.
Nancy...one other thing I do when the pain gets really bad...I use a numbing agent..like you'd use for a toothache or for a baby when they are teething. It's temporary relief, but usually enough to let me fall asleep.