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Lingual and Inferior Alveolar Nerve Damage Discussion Site

Subject: "Burning Mouth Syndrome"     Previous Topic | Next Topic
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Rossadmin
Member since Apr-21-07
1188 posts		 Aug-13-00, 04:10 PM (CST)
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"Burning Mouth Syndrome"
 
   I have added this forum at the request of people who have been diagnosed with Burning Mouth Syndrome (BMS), so that experiences can be shared. I do not have any experience with this syndrome, or any expertise. Some of the treatments used for BMS are the same as those for the symptoms of lingual nerve damage, so some of the information on the treatment pages may be helpful.

Later this year I hope to be able to research this rare syndrome and will have at least a summary of what has been published. As far as I know now, no one understands the cause of this syndrome.

Ross


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  Subject     Author     Message Date     ID  
  RE: Burning Mouth Syndrome Nadine Robertson Aug-22-00 1
     RE: Burning Mouth Syndrome Jane (Guest) Jul-18-01 2
     RE: Burning Mouth Syndrome Gail (Guest) Jul-18-01 3
  RE: Burning Mouth Syndrome Rosemarie Grey-Brook (Guest) Sep-14-01 4
     RE: Burning Mouth Syndrome Joey Feb-08-05 10
     RE: Burning Mouth Syndrome Jackie Leitch Jan-21-06 65
  RE: Burning Mouth Syndrome Elizabeth Oct-26-01 5
     RE: Burning Mouth Syndrome elsie Jan-01-02 7
  RE: Burning Mouth Syndrome Carole Nov-21-01 6
     RE: Burning Mouth Syndrome CharKor27 Jun-27-02 8
         RE: Burning Mouth Syndrome elsie Jun-27-02 9
             RE: Burning Mouth Syndrome marie Feb-09-05 11
                 RE: Burning Mouth Syndrome classickerrie Feb-09-05 12
                     RE: Burning Mouth Syndrome Marie Feb-18-05 14
                         RE: Burning Mouth Syndrome elsie Mar-02-05 15
                             RE: Burning Mouth Syndrome Linda D. Mar-09-05 17
                             RE: Burning Mouth Syndrome Marie Mar-13-05 18
                     RE: Burning Mouth Syndrome Eve_8 Mar-03-05 16
                 RE: Burning Mouth Syndrome elsie Feb-11-05 13
                 RE: Burning Mouth Syndrome Diana B Mar-15-05 19
                     RE: Burning Mouth Syndrome Classickerrie Mar-16-05 20
                         RE: Burning Mouth Syndrome Hope May-23-05 21
                             RE: Burning Mouth Syndrome Kerrie May-23-05 22
                                 RE: Burning Mouth Syndrome elsie May-24-05 23
                 RE: Burning Mouth Syndrome marie2 May-31-05 24
                     RE: Burning Mouth Syndrome marie Jun-09-05 25
                         RE: Burning Mouth Syndrome Kerrie Jun-10-05 26
                         RE: Burning Mouth Syndrome marie Jun-10-05 27
                             RE: Burning Mouth Syndrome Penny Jun-11-05 28
                                 RE: Burning Mouth Syndrome Penny Jun-11-05 29
                                     RE: Burning Mouth Syndrome Pennym Jun-11-05 30
                                         RE: Burning Mouth Syndrome marie Jun-14-05 31
                                             RE: Burning Mouth Syndrome marie2 Jun-14-05 32
                                             RE: Burning Mouth Syndrome Kerrie Jun-14-05 33
                                             RE: Burning Mouth Syndrome OS Assistant Jun-14-05 34
                                             RE: Burning Mouth Syndrome Kerrie Jun-15-05 37
                                             RE: Burning Mouth Syndrome Annika Jun-15-05 35
                                             RE: Burning Mouth Syndrome marie Jun-15-05 36
                                             RE: Burning Mouth Syndrome marie2 Jun-15-05 38
                                             RE: Burning Mouth Syndrome OS Assistant Jun-16-05 39
                                             RE: Burning Mouth Syndrome marie Jun-16-05 40
                                             RE: Burning Mouth Syndrome marie2 Jun-16-05 41
                                             RE: Burning Mouth Syndrome marie Jun-17-05 42
                                             RE: Burning Mouth Syndrome marie2 Jun-18-05 43
                                             RE: Burning Mouth Syndrome JAG Jun-18-05 44
                                             RE: Burning Mouth Syndrome marie Jun-26-05 45
                                             RE: Burning Mouth Syndrome marie Jun-26-05 46
                                             RE: Burning Mouth Syndrome marie Jul-08-05 47
                                             RE: Burning Mouth Syndrome JAG Jul-08-05 48
                                             RE: Burning Mouth Syndrome marie2 Jul-08-05 49
                                             RE: Burning Mouth Syndrome marie Jul-09-05 50
                                             RE: Burning Mouth Syndrome JAG Jul-09-05 51
                                             RE: Burning Mouth Syndrome marie2 Jul-19-05 52
                                             RE: Burning Mouth Syndrome marie Jul-21-05 53
                                             RE: Burning Mouth Syndrome marie2 Jul-24-05 54
                                             RE: Burning Mouth Syndrome marie Jul-26-05 55
                                             Does anyone have stinging pain in their hands Jennifer Jul-31-05 56
                                             RE: Does anyone have stinging pain in their h OS Assistant Jul-31-05 57
                                             RE: Does anyone have stinging pain in their h Jennifer Jul-31-05 58
                                             RE: Does anyone have stinging pain in their h Tressia Dec-04-05 59
                                             RE: Does anyone have stinging pain in their h Reesatay Dec-05-05 60
                     RE: Burning Mouth Syndrome Theresa Mar-15-06 66
  RE: Burning Mouth Syndrome-going in waves? Linda D. Dec-08-05 61
     RE: Burning Mouth Syndrome-going in waves? healing mouth Dec-08-05 62
         RE: Burning Mouth Syndrome-going in waves? H Linda De. Dec-21-05 63
             RE: Burning Mouth Syndrome-going in waves? H John Doe Jan-15-06 64
                 RE: Burning Mouth Syndrome-going in waves? H drgnfli00 Apr-03-06 69
                     RE: Burning Mouth Syndrome-going in waves? H kbginak Jul-13-08 71
             RE: Burning Mouth Syndrome-going in waves? H BMS Mar-23-06 67
     RE: Burning Mouth Syndrome-going in waves? PAULA 7 Apr-02-06 68
     RE: Burning Mouth Syndrome-going in waves? skennison May-07-08 70

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Nadine Robertson
Charter Member
 Aug-22-00, 06:31 PM (CST)
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1. "RE: Burning Mouth Syndrome"
In response to message #0
 
   I haven't been diagnosed with Burning Mouth Syndrome but with the nerve damage I have, burning is a big part of it. My lip burns, but that is just a part of the damage. This is the first time I have heard of this syndrome. Thanks, Nadine


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Jane (Guest)
unregistered user
 Jul-18-01, 04:53 AM (CST)
 
2. "RE: Burning Mouth Syndrome"
In response to message #1
 
   >I haven't been diagnosed with Burning
>Mouth Syndrome but with the
>nerve damage I have, burning
>is a big part of
>it. My lip burns,
>but that is just a
>part of the damage.
>This is the first time
>I have heard of this
>syndrome. Thanks, Nadine
>


I have a question about this Lingual Nerve, I've been to eight Doctors and a few said that I might have Sjogens or Burning Mouth, What are your problems? mine are my Lips feel so Dry, and my Tounge the same way I do have Dry Mouth, and I have burning pain all day. The Problem is I'm
a very healthy person with no Medical Condition and I don't take any Medicine, and this just happen to me after I had a White filling at the Dentist.
Right now I'm taking Salagen for the Dry Mouth, but it takes 3Months before anything works. I don't know if I have burning mouth or Sjogens or Nerve Syndrome, Im tired and this is just horribe.


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Gail (Guest)
unregistered user
 Jul-18-01, 03:34 PM (CST)
 
3. "RE: Burning Mouth Syndrome"
In response to message #1
 
   Consult an oral pathologist in the dental medicine department of any hospital. You canget more information and help there. They can advise you. Which doctors have you seen to date?


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Rosemarie Grey-Brook (Guest)
unregistered user
 Sep-14-01, 03:23 PM (CST)
 
4. "RE: Burning Mouth Syndrome"
In response to message #0
 
   I am a 46 year English woman living in England. I have had two horrendous experiences of burning mouth syndrome, and am being treated at the moment, although the good news is that I have it under control due to tolerable medication. The details of the first experience are too long to go into, but I had to have oral surgery in the socket of what had been a capped tooth and three days after the work was carried out I suddenly and quite out of the blue had the most seering pain in my mouth. I was hysterical and my husband had to get the emergency doctor to come to see me in the middle of the night and he gave me a painkiller that would have knocked out a bull! The following morning I went to see my wonderful G.P. I told her that the left side of my face was burning so badly that I wanted to tear it off. She prescribed very strong painkillers, dihydrocodeine and more importantly amitriptyline as she felt the burning was due to nerve ending damage. Within 3 weeks I was able to come off the medication although I did so slowly and never imagined such a dreadful thing would come back.

Last summer I had to have another capped tooth out as I began to experience the most dreadful all consuming burning pain. I didn't connect the two incidents, mainly I think because the first time the pain came after a lot of work/surgery had been done in a very small area and the second time the pain just began out of the blue. All attempts to keep the tooth were in vain and very reluctantly several weeks later when I could no longer cope with the pain I had the tooth out. I thought that was the end of it, but a few weeks later and to my absolute horror the burning pain came back. My initial reaction was to see my G.P. again and she prescribed the same two medicines.

The pain came under control fairly quickly, it took no more than a week, however that was almost 6 months ago and I still have to take medication. The good news is that I am almost off the painkillers and take 15mg of dihydrocodeine say every other day. This time round because it seems to be much more a long term problem I have moved from amitriptyline to nortriptyline as it doesn't have such a drowsy effect on me. My routine these days is to get to work and once there I take 15mg of dihydrocodeine on the mornings when I feel I need one. That way any drowsiness that it might give has worn off before I drive myself home. Once home I take 50 mg of nortriptyline usually with my evening meal. They can make you very tired so taking them at the correct time is very important especially if I am going to drive the following morning. If I take them at around 7 p.m. I find their effect has worn off by the morning, but I sleep the sleep of angels and I don't think a herd of elephants would wake me up!

I am under the care of the dental hospital and go to see a doctor there every few weeks. The first doctor initially told me he thought the pain was stress related. This really upset me especially as he tried to make my life sound very stressful. When he heard I had a 14 year old son his eyes lit up as he enquired if my son was going through the usual teenage rebellion. I told him that wasn't the case and that my son was a very kind and compassionate person.

Initially he prescribed 20 mg of nortriptyline, but a few weeks later increased that to 30 mg as I was getting little relief, then 40 and so now to 50 mg. So the treatment now seems to be working. A few weeks ago I went back to the hospital and saw another doctor. We chatted for some time and he told me a very interesting thing and that is that nortriptyline is prescribed for shingles which is of course an illness when damage occurs to nerve endings in the body. He said that the mouth is particularly full of nerve endings and that doctors don't know why people complain of this burning mouth syndrome, nor do they understand why some medications work so well together and also although nortriptyline is usually used as an anti-depressant, sometimes medication can be used for a completely different problem.

When I got home that evening I asked my son to go on the internet and to have a look at a site for shingles. I could hardly believe my eyes when I found references to amitryptiline and nortriptyline. Then my eyes saw the phrase "burning mouth syndrome". I couldn't believe it. So here I am now writing to fellow sufferers. I hope my story gives you hope - go and see your G.P. and ask if you can try these medications - if you are in as much pain as I have been in the past, you'll give them a try. Be warned though, dihydrocodeine has the horrible side effect of causing bad constipation - thank heavens for Fibre One! Also the medication for nerve ending damage causes a very dry mouth and I find the best way round that is to chew sugar free gum all the time, which stimulates saliva.

If anybody would like to contact me directly my email address is
itsrlr@hotmail.com.


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Joey
unregistered user
 Feb-08-05, 03:17 PM (CST)
 
10. "RE: Burning Mouth Syndrome"
In response to message #4
 
   I had a tooth (large molar) pulled about six weeks ago and now I have dry mouth.I was also in an accident last summer on a construction site wich left me with a bad neck injury.It is hard sometimes to think of how healthy I was a year ago and now I have serious anxiety.Do you have dry mouth and what do you do for it?


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Jackie Leitch
unregistered user
 Jan-21-06, 03:12 PM (CST)
 
65. "RE: Burning Mouth Syndrome"
In response to message #4
 
   I seem to have the same problems you have. I had 3 teeth extracted
last March and have been suffering since. I have a partial plate
which seems to be causing a lot of pressure in my mouth and hurts
and burns when I wear it. Now I have all these little bumps on
the roof of my mouth and under the plate that are sore as boils.
I'm sure I have had nerve damage of some kind in my mouth but instead
of getting better I'm getting worse. Got soom B1 vitamins today
to try. If you have any other suggestions please let me know.


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Elizabeth
Charter Member
1 posts		 Oct-26-01, 01:20 AM (CST)
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5. "RE: Burning Mouth Syndrome"
In response to message #0
 
   Dear Ross,
What a relief it is to find that I am not alone with this problem. After having a raft of tests and blank results I have been left to feel that I was a problem the doctors would like have go away!
Thus, I began to search on the internet for some help.
I can place the beginnings of my problems to about Sept 2000 when after experiencing a metallic taste in my mouth for some time the buring sensations began in my tongue and gradually included my upper palate.
I do have problems with compression of my neck vertebra and I have suffered on occassions from neuralgia and during my last dental visit the pain in my face was quite severe during the prodedure which was just an ordinary filling.
I shall be very grateful if some relief can be found as my life has become a bit of a torment on busy days when people expect me to speak.
The chewing gum does help for a time and so do some throat lozendes, but only a short time.
To know I'm not imagining it and I'm not alone helps much much more!
Thankyou Elizabeth


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elsie
Charter Member
 Jan-01-02, 11:05 PM (CST)
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7. "RE: Burning Mouth Syndrome"
In response to message #5
 
   Dear Elizabeth & all,
A friend referred me here and I am hoping for answers to help.
This has been pure hell... and on-going, relentless, and just plain hideous!!!

My symptoms most closely match that of Elizabeth's.
Before coming here, it would have NEVER ocurred to me that this could be a direct result of an oral surgeon's fudging of a proceedure!!

I developed my symptoms not all that long after having a broken crown extraction. I have had cfids & fms for over 23 years now, have a rectal fissure because of inept surgical proceedure which made life a hell on earth and now THIS!!! This unbearable, awful stuff! I am ready to throw in the towel!!!

Stick them all together with an unfeeling/caring spouse who is cold and TRIES to cause more stress & you can get a good & accurate picture of how wonderful life is here on planet earth for me. I have been unable to work for several years now due to the cfids/fms.. I'm a writer, but since experiencing this miserable mouth thing, do not even feel like doing THAT!!!

I am sooooo more than sorry for "going off" about this all... but geez-louise, I COULD USE A BREAK HERE!!!!

I know none of you dear people who are suffering can really do anything.. but listen.
And I appreciate that a great deal more than you know. Life is not fun anymore & hasn't been for decades it seems now.

Well, thanks for allowing this vent!!!
I wish you all the best.. and RELIEF soon!
blessings, lin


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Carole
unregistered user
 Nov-21-01, 03:10 PM (CST)
 
6. "RE: Burning Mouth Syndrome"
In response to message #0
 
   Ross, Elizabeth and the lady from England: Ross as you know one of my most severe symptoms from nerve damage (happened directly after, and is worse than ever ten months lateR) from a small root removal,is burning tongue, extending to floor of mouth and all over tongue now and getting into throat area, plus the initial metallic taste that others have reported. I seem to be the only one who has this awful problem from nerve damage,(latest findings is that the "injury of either the third division of the trigeminal nerve, prior to the division of the lingual nerve and inferior alveolar versus the injection injury of each nerve individually on the second injection I recieved") whatever that means???Bottom line no-one seems to really know nor can they suggest any remedy,its getting worse on all counts, plus no attorney wants to take this on.

I have very dry mouth, (night symptoms), which amytryptaline was prescribed for, however the very expensive doctor who did this, is wrong because another doctor plus several pharmacists have said that amytryptaline makes dry mouth WORSE, What are these doctors thinking of? and she billed the insurance for over $600, spent less time with me than the average family doctor, billed for surgery that she never did etc., no wonder we are all mistrusting of the medical profession.

Please tell the lady from England (I am also a Brit) that this has nothing whatsoever to do with stress, though granted this type of pain and the dismissive attitude of the morons who cause it and others who diagnose irresponsibly are enough to cause anyone stress. Far too little research has been done on this (Ross as you know I have spent months, researching, and contacting the only experts we know of)perhaps more would be done if some of the attorneys, physicians, dentists etc., were victims (sorry to use that word, but it is appropriate)

We all seem to have differing symptoms, and mine fall into both categories of nerve damage and burning tongue., The BT happened IMMEDIATELY and I mean within half an hour of the surgery., so the connection is obvious., Has anyone come up with anything else ?? since I last posted, (had foot surgery and other complications from a fall, not my fault, but thats another story) so didn't post for a while. I FEEL FOR ALL OF YOU, WE ARE UNFORTUNATE VICTIMS OF A LITTLE KNOWN DAMAGE TO THE MOUTH AREA, RESULTING FROM CARELESSNESS ON THE PART OF PHYSICIANS. Sincerely, "C" P.S. no-one has diagnosed me with BMT, they all view it as a symptoms from nerve damage, so I am wondering why more of you have not reported this side effect??


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CharKor27
Charter Member
 Jun-27-02, 10:08 PM (CST)
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8. "RE: Burning Mouth Syndrome"
In response to message #6
 
   To all of you with Burning Mouth Syndrome,
Is the roof of your mouth affected? I have been reading about lips, tongue, under tongue, even throat mentioned, but none have said roof of mouth. My Dad has been suffering for going on 3 years with many of the symptoms mentioned, but his problem lies mainly in the roof of his mouth. There is no memory of dental injury as far as I know, but it is possible, since he had his upper teeth removed many years ago. He never got used to wearing his dentures so what he has been told is the nerves under the mucosa of the roof of his mouth are very close to the surface now. His complaints include burning mostly, but there seems to be alot of activity going on that is similar to the feeling of having worms moving in the roof of your mouth(sorry for that). But his quality of life has changed so much. He is on heart medicine and he has been on medications such as neurontin, clonipin, celexa, not sure of all of them, but we are trying to find an answer to exactly what he is suffering from. Could it be Burning Mouth Syndrome? We have watched him suffer so long we want to help him. His neurologist is baffled, pretty much trying anything that my sister who is a pain specialist suggests. It has been very interesting reading all of the posts on this site, it's so sad to realize that there are so many people who have to suffer like I have seen my Dad. This is the first I have heard of BMS and the other problems that have come about from having wisdom teeth extracted and even other dental work. Prayers for all of you.


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elsie
unregistered user
 Jun-27-02, 10:51 PM (CST)
 
9. "RE: Burning Mouth Syndrome"
In response to message #8
 
   Dear Char,
I'm sorry for what your dad has had to go through. I truly believe that what he's experiencing is the burning mouth syndrome.
Mine only came AFTER the dental work, and after reading many of the posts here, I am convinced that it was due to nerve damage from that.

I am very sorry, as I know how absolutely miserable this is.
I have taken to swishing coloidal silver in a bit of tepid water around in my mouth when it gets bad. It does help some. Also, once in awhile I will use soda water, as it does soothe it a bit.

I just don't know what else to tell you that would help. I get the same burning sensation on my arms and legs at times from the cfs. I can only wait it out.

I wish there was something more substantial to offer in the way of help. But I do find that taking certain supplements can increase the sensation after awhile. It is a never ending battle for certain.
I'll keep your pop in my prayers. I wish you the best.

sincerely, elsie


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marie
unregistered user
 Feb-09-05, 02:54 AM (CST)
 
11. "RE: Burning Mouth Syndrome"
In response to message #9
 
   I can empathise with all of you.My pain is centred around the tip of my tongue.I can not link it to any dental work.I find that when I use deodorant,perfume or any strong cleaning product I inhale fumes that go directly to my tonge and I can taste them and the burning becomes worse. Has any one experienced this? Also I crave alcohol where I never really drank much before.I seem to salivate all the time and I need to chew something or drink copious amounts of water or soda water in order to appease the feeling.Ithink i have damaged the nerves somehow.


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classickerrie
Member since Feb-9-05
25 posts		 Feb-09-05, 11:21 AM (CST)
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12. "RE: Burning Mouth Syndrome"
In response to message #11
 
   Marie-
I too have the burning tongue, although mine was in fact due to a severed lingual nerve. My nerve was repaired the same day/time it was cut. I was in absolute "want to die" type of pain for a good solid 3-4 months, that's how long it took for the nerve to regenerate. I am not completely healed. I still have a numb tongue, with a constant feeling of pin pricks and like I'm sucking on a battery. Can't taste food on the right side. And every once in awhile I do still get the burning thing. I don't know why it happens. I do know that for me, if I eat ANYTHING even slightly hot and spicy, it triggers it right away. I cann't chew gum for very long, it starts to make it hurt. But... the worst is the cold weather. I have noticed that with the cold weather, it gets way more irritated than normal.
I have no idea why this syndrome would happen to someone without any type of procedure to cause irritation to that area, very strange.
I wish you all the best. I never found any medications that helped the burning, I just had to live with it. Thank god it only happens every now and then as opposed to every flippin day, all day, like before, so to me that's improvement.
Thank-you and good luck.

Love@light
Kerrie


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Marie
unregistered user
 Feb-18-05, 06:11 AM (CST)
 
14. "RE: Burning Mouth Syndrome"
In response to message #12
 
   Thanks for replying ladies.Something really astonishing has happened since I posted my last message. I went for my annual visit to my peridontist and explained what I have been going through. She photocopied something about burning mouth out of a medical textbook. She also reffered me to an oral pathologist whom she studied with years ago who she claims has much knowledge about the condition. After reading through the notes, the usual 101 causes of BMS were stated and the very real problem of no particular cure was discussed but one possible thing to try was mentioned. A daily dose of between 50-100 grams of the B vitamins. ie. B1 B6 and B12. Plus Iron and Folate. I immediately went out and bought the lot. This has resulted in my symptoms reducing so much that I almost feel normal again. The burning does not start until much later in the day and is more like an annoyance rather than the unbearable agony I used to feel. Right now, I feel nothing. For the first time in 8 months I'm hopeful but I'm not going to hold my breath. This thing has a mind of its own.
Please try this for yourselves if you havent already.

Marie.


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elsie
unregistered user
 Mar-02-05, 02:19 PM (CST)
 
15. "RE: Burning Mouth Syndrome"
In response to message #14
 
   It sounds like you have it under control now... wonderful! You were fortunate to find someone who could refer you to one who studied this phenomenon. And I had heard the B-vits. helped, but had forgotten it.
Thanx for the rememinder & for posting your results.

Keep up the great progress!


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Linda D.
unregistered user
 Mar-09-05, 11:09 AM (CST)
 
17. "RE: Burning Mouth Syndrome"
In response to message #15
 
   In the TNA Newsletter, there was a blip about trying Methyl Cobalimine B 12. The pills are WAY too acidic, but an oesteopathic doctor found the shot form. It does help with the burning, but I have to take the shots nearly every 4-5 days in the hip. The newsletter said it needed to be the "Methyl" not the "Cyna" B12...


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Marie
unregistered user
 Mar-13-05, 07:30 AM (CST)
 
18. "RE: Burning Mouth Syndrome"
In response to message #15
 
   Elsie,
Try the vitamins.B1 should actually be 300mg daily.Ihave been taking these now since my last post.It is by no means gone completely but the feeling is much less excruciating.I don't know how long I will have to take these for but Just to be sure they were responsible for the relief I felt I did not take any one morning and by 11.00 am I was in agony.I had forgotten just how bad this thing was.I raced home took my pills and in no time I felt better.

Marie.


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Eve_8
Member since Mar-2-05
12 posts		 Mar-03-05, 09:12 AM (CST)
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16. "RE: Burning Mouth Syndrome"
In response to message #12
 
   ClassicKerrie:

The same thing happened to me this past Monday. The oral surgeon severed and put my nerve back together during the same surgery. How soon after did the burning start for you? I seem to have a dull pain that could be described as burning. Kind of how your legs feel after you excercise too much. Did your burning start out unbearable or gradually become that way? I'm fearful that the worst is yet to come.

I'm glad to hear that your pain is becoming more scarce. I wish you the best.

Eve


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elsie
unregistered user
 Feb-11-05, 04:12 PM (CST)
 
13. "RE: Burning Mouth Syndrome"
In response to message #11
 
   Hello Marie,

It really does sound like BMS via nerve damage. Even though you can't link it to dental work, nerve damage can be attributed to a number of things.

I find that when I take the herbal supplement, Goldenseal... it causes this in me. I take it for other things (like infections or inflammation), but I have to watch it. I can maybe tolerate it up to about a week. And the labeling will tell you not to take it at all past 3 weeks etc...

So, quite possibly... there is something that just causes this in you that can be attributed to as little as a food allergen. Our bodies are so weird that they just react strangely to so many things sometimes.

I have CFIDS, and some of the other chronic illnesses that sometimes accompanies it.
I have had it for 27 years now. And I have discovered, that fact alone has caused some pretty mysterious and crazy maladies for me to deal with through the many years.

One of the crazy maladies that I share with many others as a result of this illness is the various nerve neuropathies & damage it causes.
If you've had a thorough check up or three and you have no other thing to attribute it to, then allergens may well be the cause for you.

I wish you the best & hope that you will find relief soon.


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Diana B
unregistered user
 Mar-15-05, 11:56 AM (CST)
 
19. "RE: Burning Mouth Syndrome"
In response to message #11
 
   I wonder if there isn't a connection between burning mouth and chemical exposures? I read somewhere that the fragrance industry is a multi-billion dollar industry seeking to expand in all directions...convincing consumers they need fragrance in all sorts of new applications. These fragrances have a host of hostile chemicals included to make them disperse, persist, and so on. Some are known neurotoxins. I react to fragrance in perfumes, laundry detergent, cleaning fluids, etc.

My mouth sores were helped with the elimination of standard toothpaste with sodium lauryl sulfate (SLS). I have some burning / tongue sores now, several years later, but I'm wondering if I was exposed unbeknownst to me, to a pesticide application at work or something else like that?

Here's a post I made on another site a few years ago:

I started having extremely painful tongue sores that recur every few months. I have been prone to canker sores all my life. I noticed however, that the first time I got the tongue sores was after my next door neighbor did a heavy pesticide application to kill mosquitos. She applied it wrong, and got sick herself. The air inside my house smelled for a day, and my cat was sick for a week and wouldn't even drink water. (maybe the cat had tongue sores?) Next time I got them, it was after they painted the area I work with latex paint. I'd feel horrible at work, and by midnight or so, the sores would go away, but the next day, at work, they'd return. From time to time I have done some reading about effects of chemical exposure to various substances, and I have seen tongue sores listed, but I can't recall which substances now, although I think latex paint was one of them. I'm wondering if anyone has explored this possible environmental-toxic connection more? I am sensitive to certain chemicals as well, and get temporary asthma-type symptoms. Another related bit of information is that I grind my teeth at night. My dentist discovered this and made me a mouth guard which I wear. But when I forget occassionally, I can find a line along the length of my tongue and another inside my cheek where I have been literally chewing on my tongue and cheek while I sleep. Sometimes, this can then get inflamed, and sometimes it goes away. I have found that vitamin B and lactobacillus tablets help my canker sores, along with cutting all sugar and chocolate which seems particularly bad. I also eat lots of plain yoghurt, and in the worst case, with this routine, these sores disappear in a week. I also like carbonated mineral water to ease the pain.


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Classickerrie
unregistered user
 Mar-16-05, 12:01 PM (CST)
 
20. "RE: Burning Mouth Syndrome"
In response to message #19
 
   Diana B.-
Interesting. I do know that in my case, I do not have "sores", burning tongue is a syndrome that causes severe burning(for me it's from the inside out)deep in the tongue. There are no sores, in fact when it is happening, you can't tell anything is going on. On occasion it will look a little red and irritated but... no sores. I also know that mine was a direct result of a lingual nerve injury, which now has a nuroma and thus I suppose is causing the Buring Tongue Syndrome. Perhaps it gets irritated with the various chemicals and scents that we encounter throughout the day, that is possible. I will have to pay more close attention to the "attacks" to see if I notice any "scents" in the air at the time. I too have TMJ and grind on my teeth as well. Also with the numb tongue, I often find myself biting on it, hard enough to leave a mark on it but... I can't feel it when I'm doing it.
Thanks for the insight. Best of luck to you.
Kerrie


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Hope
unregistered user
 May-23-05, 02:30 PM (CST)
 
21. "RE: Burning Mouth Syndrome"
In response to message #20
 
   I just had my wisdom teeth out last week and they said they bruised or streched my trigeminal third division nerve. I have no feeling in 2/3s of my chin, my left side of my lip, my left teeth and gums. It feels wierd and uncomfortable. I am a little discouraged after reading all of the entries here. I hoped this would go away quickly. I am worried, and a little upset about it all. I will keep everyone posted on my progress as well.

-Hope DeVall


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Kerrie
unregistered user
 May-23-05, 03:47 PM (CST)
 
22. "RE: Burning Mouth Syndrome"
In response to message #21
 
   Hope-
Hello, sorry to see that you had to look up this site. Keep up the hope, the body tends to follow the mind. i.e., if you think you'll never get better, it may take alot longer to heal. the good news for you is that if the nerve was just bruised, you should have a full and complete recovery however, it may take upto 6 months, maybe even longer, just depends on how bad it was injured. You may want to post in one of the other areas, this particular one is for BMS, and not all that many people have this so they don't look here as often. Do keep us posted on your condition. Hope you heal SOON!
Good luck,
Kerrie


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elsie
unregistered user
 May-24-05, 12:27 PM (CST)
 
23. "RE: Burning Mouth Syndrome"
In response to message #22
 
   I haven't been here in awhile...
I'm sorry to see so many of you suffering this way.

Thankfully, mine did finally settle down. I do, on occasion get a bout of it, so there is hope "Hope" and everyone else!!

I have a question for anyone who would care to answer it...

Do or have any of you been diagnosed with Chronic Fatique Immune Dysfunction?? CFIDS??

The reason I ask is that I am a group support leader for this disorder, and I personally have had this dx since like 27 years ago. I have found that since I am of the viral sub-set of patients with this disorder, in talking to many, many other pts. thru the years, BMS is quite common among them. I have a support community for CFIDS, FMS, and Related Immune Disfuncion Disorders.

Just out of curiousity, do any of you have this diagnosis? Or have you ever been diagnosed with any immune compromising disorder?

Wishing you the best today,
linda carlson a.k.a... elsie


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marie2
unregistered user
 May-31-05, 06:06 PM (CST)
 
24. "RE: Burning Mouth Syndrome"
In response to message #11
 
   >I can empathise with all of you.My pain is centred around
>the tip of my tongue.I can not link it to any dental work.I
>find that when I use deodorant,perfume or any strong
>cleaning product I inhale fumes that go directly to my tonge
>and I can taste them and the burning becomes worse. Has any
>one experienced this? Also I crave alcohol where I never
>really drank much before.I seem to salivate all the time and
>I need to chew something or drink copious amounts of water
>or soda water in order to appease the feeling.Ithink i have
>damaged the nerves somehow.

Hi Marie,
My name is Marie also,
So weird that my symptoms are like yours except for the craving of alcohol and the salivate problem.
You are the first person in 8 yrs that I have met with bms that has the same reactions to chemicals as me. Yes 8 years. I have not yet tried the type of b vitamins that you are taking.
I just have been taking b stress complex. Not quite doing the job.
I have not read any more messages from you lately. Just curious how you are doing now.


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marie
unregistered user
 Jun-09-05, 07:35 PM (CST)
 
25. "RE: Burning Mouth Syndrome"
In response to message #24
 
   Hi marie 2

I wish we could meet under better circumstances. The B vitamins worked very well. I reccomend them highly , however it seems a little dangerous to be taking the amounts necessary to make any difference. Vit b1 300mgs b12 100mg b6 100mg for at least 4 weeks.My doctor said there can be side effects for prolonged use. I took these for i month and felt so much better. After i stopped the burning returned and so i took them again.I am satisfied they work. But i can not take them indefinitely, so now I take a multi b vitamin daily and some days the burning is reduced and some days its just as firece. i keep away from chemicals and perfumes and notice a dramatic drop in pain. i am considering going tp this oral surgeon my dentist has reccomended, who works with burning mouth patients. The only thing stopping me is that it appears incurable and that he will only tell me to do what i amm doing now any way so whats the point.Does any one know if nerve damage can be fixed.?


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Kerrie
unregistered user
 Jun-10-05, 10:37 AM (CST)
 
26. "RE: Burning Mouth Syndrome"
In response to message #25
 
   Marie-
Hello, nerve damage is a tricky one. If the nerve was just bruised and beat up a bit due to injection or extraction, then chances are very, very good that the nerve will heal all on it's own over time, of course taking the B-vitimins and other things can help speed up the process. If the nerve was severed/cut in two, then the only real help is to have the nerve graft surgery. With the nerve re-attachment surgery, it is very, very "iffy". For example I was given a 50/50% chance that the surgery would HELP me and a 50/50% chance that it could actually make things WORSE. Even with people who have had it done, still do not end up 100% the way they were before the injury. But... improvement is improvement so if they got any relief then I suppose it would be worth it. But for me 50/50 is not odds that I am willing to take at this point, maybe if it wouldn't have the chance of getting worse, I would take the chance, but... not with the odds I was given.
Best of luck to you and your recovery.
Kerrie


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marie
unregistered user
 Jun-10-05, 02:54 PM (CST)
 
27. "RE: Burning Mouth Syndrome"
In response to message #25
 
   >Hi marie 2
>
>I wish we could meet under better circumstances. The B
>vitamins worked very well. I reccomend them highly , however
>it seems a little dangerous to be taking the amounts
>necessary to make any difference. Vit b1 300mgs b12 100mg b6
>100mg for at least 4 weeks.My doctor said there can be side
>effects for prolonged use. I took these for i month and felt
>so much better. After i stopped the burning returned and so
>i took them again.I am satisfied they work. But i can not
>take them indefinitely, so now I take a multi b vitamin
>daily and some days the burning is reduced and some days its
>just as firece. i keep away from chemicals and perfumes and
>notice a dramatic drop in pain. i am considering going tp
>this oral surgeon my dentist has reccomended, who works with
>burning mouth patients. The only thing stopping me is that
>it appears incurable and that he will only tell me to do
>what i amm doing now any way so whats the point.Does any one
>know if nerve damage can be fixed.?

Hi Marie,
I think that would be a good sign that you are responding to the b vitamin supplements. That may mean that you have a vitamin deficiency. Have you been tested for b12 deficiency?
I have read that some of the testing for b12 def can be not so accurate.
I am waiting on a Ion Profile test that my doctor has to order. It is a blood and urine test by Metametrix and it test for all kinds of stuff. Very expensive but what the heck it is only my health we are talking about. Plus I have the chemical sensitivities.
I read on another board about b12 deficiency and they suggest trying the Methylb12 sublingual with a b complex. The Methyl works better than the cyanocobalamin sublingual. Maybe give it a try and see what happens. Oh, vitamin b2 (riboflavin)deficiency causes burning lips,tongue,and mouth
Take care,
Marie 2


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Penny
unregistered user
 Jun-11-05, 06:49 AM (CST)
 
28. "RE: Burning Mouth Syndrome"
In response to message #27
 
   Let me start from the beggining. I have gingervitis and have ahd my gums scraped. And right before this happened I had a tooth that cracked rebuilt. So after that I got a red small triangle on the tip of my tongue that burned. I though it would go away but it did not. Scared it was cancer I went to see an oral specialist who said it was not cancer perhaps BMS. NOW, I also have pain in my gums/teeth area primarily the top. I read in one article that can effect your teeth. I am going to dentist (gum specialists) next week so I will have to ask. Does anyone else have problems with their teeth too? Just curious. Sometimes between the tongue and throbbing teeth I could scream. It does not start up in earnest till around 11:00 am or so. Usually I can control it with Lorezapan but I wonder if I will have to be doped up the rest of my life!! I am 57. Thank you for any advise you can give me. So glad to have found this group. I will register to be a member. PS The Oral Specialist jsut told me to spray Cloraseptic on my tongue! Ha! That lasts for 30 seconds! Thanks again and I hope you are all doing well.

Penny


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Penny
unregistered user
 Jun-11-05, 07:09 AM (CST)
 
29. "RE: Burning Mouth Syndrome"
In response to message #28
 
   Be very very careful taking Lorezapan as if taken for any considerable time you could experience the most horrific "drug withdrawal" symptoms. I finally got off this drug after two attempts. I was originally put on it for "panic attacks". Be strong and try something else less addictive. Good luck and keep your chin up, something good must happen.


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Pennym
Member since Jun-11-05
1 posts		 Jun-11-05, 07:59 AM (CST)
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30. "RE: Burning Mouth Syndrome"
In response to message #29
 
   Penny

Thank you. I don not take it regularly. Only when absolutely necessary. God Bless!


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marie
unregistered user
 Jun-14-05, 07:36 AM (CST)
 
31. "RE: Burning Mouth Syndrome"
In response to message #30
 
   Hi everyone,
Penny I too had gum disease about five years ago and see a peridontist every 9 months or so but my burning started about i year ago.I have not been tested for b12 deficiency but think that any deficiencies i may have had would surely have been taken care of by now and the burnig still persists.Today i cleaned my shower with a mould killer containing bleach something i try to avoid and am suffering so much burning that i think i may have caused the condition in the same way. I think my nerves were damaged by chemicals and poisons.I also notice my sense of smell is heigtened and i can no longer bare perfumes, deodorants or heat rubs.Its so comforting to communicate with others about this.By the way i am in Australia where are you all from?


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marie2
unregistered user
 Jun-14-05, 09:22 AM (CST)
 
32. "RE: Burning Mouth Syndrome"
In response to message #31
 
   >Hi everyone,
>Penny I too had gum disease about five years ago and see a
>peridontist every 9 months or so but my burning started
>about i year ago.I have not been tested for b12 deficiency
>but think that any deficiencies i may have had would surely
>have been taken care of by now and the burnig still
>persists.Today i cleaned my shower with a mould killer
>containing bleach something i try to avoid and am suffering
>so much burning that i think i may have caused the condition
>in the same way. I think my nerves were damaged by chemicals
>and poisons.I also notice my sense of smell is heigtened and
>i can no longer bare perfumes, deodorants or heat rubs.Its
>so comforting to communicate with others about this.By the
>way i am in Australia where are you all from?

Hi Marie,
I am from the USA.
Your symptoms are so much like mine, especially about the heightened smells and chemical sensitivities. I can't tolerate anything with a menthol smell...it burns my mouth and even my eyes.
How old are you Marie? I am 55.
About the vitamin deficiency...you can have b12 deficiency for years if your stomach doesn't obsorb it. I am still waiting on that darn Ion test from the doctor. I would like to get it over with and see what is going on as far as deficiencies. Then I can move on.

Marie..Annika on this chat forum is from Austrailia. We e-mail each other often.
Take care,
Marie2


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Kerrie
unregistered user
 Jun-14-05, 11:02 AM (CST)
 
33. "RE: Burning Mouth Syndrome"
In response to message #32
 
   Ness, and JAG are also Aussies-lucky dogs! I have always wanted to go to Austrailia, looks so beautiful. There and Bora, Bora the two places I want to go before I die. Dreams are good!
Kerrie


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OS Assistant
unregistered user
 Jun-14-05, 04:48 PM (CST)
 
34. "RE: Burning Mouth Syndrome"
In response to message #33
 
   Kerri,

Canada is pretty spectacular too. Nothing prettier than the Rockies is Vancouver, Banff and if you like winter---Ottawa has the longest skating rink in the world. It's a very clean pretty city all year round. The people are kind and courteous and your American bucks go a long way! Me, I would like to see Bob Barker and "come on down" in California before he/I die. Chuckle Chuckle.


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Kerrie
unregistered user
 Jun-15-05, 08:12 AM (CST)
 
37. "RE: Burning Mouth Syndrome"
In response to message #34
 
   OS Assistant-
HI, I know Canada is a very beautiful place, I have been there a few times. Never been over to Ottawa though. I live in the Pacific Northwest so Canada is not all that far of a trip for me. I do very much like it there. You have some of the most clearest, cleanest water I have ever seen in my life. Took my breath away. And I do like the fact that our money do go along way. Last time I was there, we were at the Wet N Wild water park , got a ice cream, paid with a $20.00 and got back like 22-23 canadian dollars, awesome! I have alos been to Cali more times than I could count. The Price is Right is a hard thing to do. I got tickets once, but... the tickets don't guarantee you anything. You then have to show up and stand outside in line for hours, and hours and hope and pray that the producers will pick you to be in the audience. Then you might get picked to be on the show. Anyway, I didn't want to waste an entire day on a possibility. Better hurry though, Bob is getting up there, he may not continue to do the show for much longer. Anyway like I said dreams are good.
Take care,
Kerrie


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Annika
Member since May-24-05
13 posts		 Jun-15-05, 05:45 AM (CST)
Click to EMail Annika Click to send private message to Annika Click to view user profileClick to add this user to your buddy list Click to send message via AOL IM Click to send message via ICQ  
35. "RE: Burning Mouth Syndrome"
In response to message #31
 
   Different Strokes For Different Folks
Hi Marie. I live in Sydney Australia. where are you? I would love to meet someone with BMS. I believe it would be good support. Any cleaning agents makes my mouth bad. Take care Annika


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marie
unregistered user
 Jun-15-05, 06:41 AM (CST)
 
36. "RE: Burning Mouth Syndrome"
In response to message #35
 
   Hi again, girls

marie ,I am 44.You and I have very similar symptoms. Just to complicate things let me throw this spanner into the works. Today I found a lump in my neck and went to my doctor.He told me it is probably swelling in the thyroid gland. Tomorrow I am going for an ultrasound and a blood test.Do you think there is any connection? I am just about ready to scream. I do not want any more problems.I hate doctors!!


By the way I would love to visit New Orleans.

Marie


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marie2
unregistered user
 Jun-15-05, 09:03 AM (CST)
 
38. "RE: Burning Mouth Syndrome"
In response to message #36
 
   >Hi again, girls
>
> marie ,I am 44.You and I have very similar symptoms. Just
>to complicate things let me throw this spanner into the
>works. Today I found a lump in my neck and went to my
>doctor.He told me it is probably swelling in the thyroid
>gland. Tomorrow I am going for an ultrasound and a blood
>test.Do you think there is any connection? I am just about
>ready to scream. I do not want any more problems.I hate
>doctors!!
>
>
>By the way I would love to visit New Orleans.
>
>Marie

Hi Marie,
Oh my gosh....Thyroid has been implicated as a possible cause of burning mouth syndrome. So yes their could be a connection. I have posted messages on a thyroid board and asked that question...and some of them have that symptom and when they get their thyroid medication to the right level the burning goes away. They notice the burning coming back just before they need another adjustment of their medication.
I have been tested about 3 times for thyroid and the test always show on the normal side. But what I have read ...you can have hypothyroid even if the test show normal. My doctor gave me some thyroid to try but I was to affraid of taking it. Now if he said I would die without it I probably would take it for sure.
I will wait for you to have yours checked first LOL!! since our symptoms are so much the same. I think hypothyroid can cause you to have all kinds of weird things such as food allergies etc..
Most of the people I read about seem to like the Armour thyroid medication. You might ask about that if you need to take any.
Well, keep me posted I am very interested what happens. I need to know if I should take my thyroid medicine Ha! Ha!

Hey you would like to visit New Orleans? Not me! Not with all that spicey hot cajun food...I could just see me?
I live in California.
Take care,
Marie2


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OS Assistant
unregistered user
 Jun-16-05, 02:39 PM (CST)
 
39. "RE: Burning Mouth Syndrome"
In response to message #38
 
   HI Marie 1 and Marie 2

Not only do I work for an Oral Surgeon but he is also a medical doctor.
I asked him about burning mouth syndrome today to see if he had anything in his brain arsenal for you both. He is not aware of this forum so I got the straight goods.
He calls this syndrome "idiopathic" which means that no one knows what causes it. I specifically asked him if he had heard of the thyroid gland as being a possible culprit and he said "definitely" He has seen the syndrome resolve itself when the appropriate thyroid medication was started. He also mentioned a lack of vitamin B12, medications and some diets(food allergies). I'm afraid he had nothing new to add and I didn't want to push for more.
Good Luck to you both.

OS Assistant


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marie
unregistered user
 Jun-16-05, 02:49 PM (CST)
 
40. "RE: Burning Mouth Syndrome"
In response to message #39
 
   >HI Marie 1 and Marie 2
>
>Not only do I work for an Oral Surgeon but he is also a
>medical doctor.
>I asked him about burning mouth syndrome today to see if he
>had anything in his brain arsenal for you both. He is not
>aware of this forum so I got the straight goods.
>He calls this syndrome "idiopathic" which means that no one
>knows what causes it. I specifically asked him if he had
>heard of the thyroid gland as being a possible culprit and
>he said "definitely" He has seen the syndrome resolve itself
>when the appropriate thyroid medication was started. He
>also mentioned a lack of vitamin B12, medications and some
>diets(food allergies). I'm afraid he had nothing new to add
>and I didn't want to push for more.
>Good Luck to you both.
>
>OS Assistant

Thanks for the confirmation on the hypothyroid theroy.
Now if my Ion test comes back all normal then I will look more closely at my thyroid and might give it a try.


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marie2
unregistered user
 Jun-16-05, 07:00 PM (CST)
 
41. "RE: Burning Mouth Syndrome"
In response to message #40
 
   >>HI Marie 1 and Marie 2
>>
>>Not only do I work for an Oral Surgeon but he is also a
>>medical doctor.
>>I asked him about burning mouth syndrome today to see if he
>>had anything in his brain arsenal for you both. He is not
>>aware of this forum so I got the straight goods.
>>He calls this syndrome "idiopathic" which means that no one
>>knows what causes it. I specifically asked him if he had
>>heard of the thyroid gland as being a possible culprit and
>>he said "definitely" He has seen the syndrome resolve itself
>>when the appropriate thyroid medication was started. He
>>also mentioned a lack of vitamin B12, medications and some
>>diets(food allergies). I'm afraid he had nothing new to add
>>and I didn't want to push for more.
>>Good Luck to you both.
>>
>>OS Assistant
>OOPS this message is from me Marie2
>Thanks for the confirmation on the hypothyroid theroy.
>Now if my Ion test comes back all normal then I will look
>more closely at my thyroid and might give it a try.


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marie
unregistered user
 Jun-17-05, 08:53 PM (CST)
 
42. "RE: Burning Mouth Syndrome"
In response to message #41
 
   Thanks for the info OS Assistant. The plot thickens.Marie2 i am going to need a biopsy done on my thyroid cyst and will let you know the outcome.I am trying to keep positive.
Marie


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marie2
unregistered user
 Jun-18-05, 10:25 AM (CST)
 
43. "RE: Burning Mouth Syndrome"
In response to message #42
 
   >Thanks for the info OS Assistant. The plot thickens.Marie2 i
>am going to need a biopsy done on my thyroid cyst and will
>let you know the outcome.I am trying to keep positive.
>Marie

Hi Marie,
Are you having a biopsy to check for cancer?
If it is ....the cure rate is very high.
My sister in-law had thyroid cancer and she was treated and she is doing fine and is cancer free.

I finally got my ion profile test kit. I will try and get it sent off this week.

Take care,
Marie2


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JAG
unregistered user
 Jun-18-05, 09:37 PM (CST)
 
44. "RE: Burning Mouth Syndrome"
In response to message #42
 
   HI MARIE, SO HAVE YOU A CYST ON YOUR THYROID, OR IS IT THE GLAND ITSELF YOU ARE TO HAVE THE BIOPSY ON? IF ITS THE GLAND, I HAVE HAD THIS DONE TWICE(ONCE BACK IN 99 IN SCOTLAND, AND ONCE IN 03 HERE IN OZ) BOTH FINE NEEDLE ASPIRATIONS AND BOTH RESULTS BENINE) DOESNT REALLY HURT JUST A LITTLE UNCOMFORTABLE, SO DONT WORRY.

MY THYROID THE FIRST TIME WAS SIMPLY DIAGNOSED" THYROIDITIS" ENLARGED BUT NEITHER OVER OR UNDERACTIVE. HOWEVER 5 MONTHS AFTER MY LAST CHILD WAS BORN IT STARTED TO SWELL AGAIN AND ON TESTING (FNA AND BLOODTEST) THIS TIME UNDERACTIVE, BUT IT HAS SINCE THEN SWAYED TO OVERACTIVE, AND NOW FINALLY OVER 2 YEARS LATER, I AM DROPPING MY MEDICATION GRADUALLY HOPEFULLY TO NOTHING AS ITS SEEMS TO BE SLOWLY RETURNING TO NORMAL.

ITS A TRICKY ONE THE THYROID, CAN GIVE YOU ALL SORTS OF WEIRD SYMTOMS, INCLUDING ANXIETY WHICH I EXPERIENCED AND BMS WHICH I HAVENT THANKFULLY. DONT THINK I COULD HANDLE THAT AS WELL AS THE OTHER NERVE PAIN I HAVE!!

ANYWAY, AS MARIE2 SAYS IT WILL BE FINE I'M SURE, BUT IF NOT TREATMENTS FOR THYROID PROBLEMS NEED SOME FINE TUNING OCCASIONALLY, BUT IT IS WELL MANAGED. AS IS THYROID CANCER.

STAY POSITIVE, ITS JUST LIFE CHUCKING YOU ANOTHER CURVEBALL!
TAKE CARE J


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marie
unregistered user
 Jun-26-05, 00:45 AM (CST)
 
45. "RE: Burning Mouth Syndrome"
In response to message #44
 
   Thankyou Jag and Marie 2.
You made me feel so much more positive. I am going in on 28.6.05 for a biopsy. I have been told i have a cyst on the thyroid gland.it measures approx 3.5 centimetres long and 2.7 wide. It is a 'complex' cyst containing both fluid and solids. Right now my mouth is burning and i hate it.
My friends think i am nuts. no one has heard of this thing and they probably think i am making it up. Do you find you suffer in silence and no one cares to ask you. Hey how is your mouth ? Do you still feel pain? Of course you give up talking about it and when you do bring it up they think well it can't be that bad you have not mentioned it it in months or years?
Thank god for this chat board.


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marie
unregistered user
 Jun-26-05, 09:55 AM (CST)
 
46. "RE: Burning Mouth Syndrome"
In response to message #45
 
   >Thankyou Jag and Marie 2.
>You made me feel so much more positive. I am going in on
>28.6.05 for a biopsy. I have been told i have a cyst on the
>thyroid gland.it measures approx 3.5 centimetres long and
>2.7 wide. It is a 'complex' cyst containing both fluid and
>solids. Right now my mouth is burning and i hate it.
>My friends think i am nuts. no one has heard of this thing
>and they probably think i am making it up. Do you find you
>suffer in silence and no one cares to ask you. Hey how is
>your mouth ? Do you still feel pain? Of course you give up
>talking about it and when you do bring it up they think well
>it can't be that bad you have not mentioned it it in months
>or years?
>Thank god for this chat board.

Hi Marie,
Good to hear from you again.

Hey,ask the doctor when you see him if that cyst on the thyroid could be causing your tongue to burn? The thyroid effects every cell in the body. I know some people on the thyroid message board have complained about a burning tongue also...and usually it improved after adjusting their thyroid meds.

I suffer in silence most of the time. People seem to forget easily when they are not suffering from chronic pain.

Good Luck,
Marie2


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marie
unregistered user
 Jul-08-05, 06:01 AM (CST)
 
47. "RE: Burning Mouth Syndrome"
In response to message #46
 
   Hi Marie 2

Hope you are well.Thankfully my tests all proved negative.So nothing nasty to worry about, however after draining much of the fluid in the cyst, it has returned. I am told this is unfortunately normal in many cases.I will learn to live with it and just watch it for any changes. The thyriod function itself is normal, no hyper/hypo .The doctor I consulted is an endocrine specialist yet when I asked him about bms he said he had never heard of it and asked me to describe the symptoms.He appeard sceptical and probably thinks I am a hypochondriac. He quickly dismissed the whole thing and changed the subject.


P.S My kids caught me on this site and laughed their heads off that I belong to a chat site about ailments!!! I don't usually chat on line.


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JAG
unregistered user
 Jul-08-05, 07:43 AM (CST)
 
48. "RE: Burning Mouth Syndrome"
In response to message #47
 
   Dear Marie,
I am really glad that your tests are all negative, it is a huge relief isn't it? My throid was enlarged for years, but also neither under/over active, but it can change as mine did become first under then swung the other way, and is now seemingly returning to normal as I am reducing my thyroxin. Its a tricky one the thyroid!

Kids can be cruel cant they? I mean, to laugh because you are chatting on line to others with the same horrible problem that you have seems(no offence) a little ignorant. I guess they wouldnt think it so funny if they could be in your shoes for a day. I think the youngsters are under the misconception that "the web" is somewhere they go to talk totally meaningless drivel with other Kids! They really are lucky enough to have little more to worry about! I have never chatted on line before I found this site either,
but thank goodness I did, as nobody I talk to in person has a clue what I have to endure on a daily basis, except you guys.

Please dont let their ridicule ever stop you coming back.

Take care J


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marie2
unregistered user
 Jul-08-05, 08:18 PM (CST)
 
49. "RE: Burning Mouth Syndrome"
In response to message #48
 
   Hi Marie #1,
I have to remember to put marie2 or people will get us mixed up.
That must be a big relief now...Glad to hear it is not cancer.
Now you can get back to worrying about your bms....LOL.

My teens are use to seeing me chat to people on line about my rotten health. Heck at least the people on the net can understand what I am going through.....my kids don't have a clue. They do worry about me though.

The enternet is the best thing that ever happened. You think about it... you don't have to suffer alone...you can have support groups without leaving your home. Now we have communication where as we didn't before. That would of been horrible if I would of gotten bms before the internet....because most doctors never heard of burning mouth syndrome and I would of felt really like a freak of nature.

Oh well, I did my Ion profile test and I am still awaiting the results. It takes about 2 wks to get the test back. I should be getting them sometime next week.

Take care,
Marie2


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marie
unregistered user
 Jul-09-05, 07:49 AM (CST)
 
50. "RE: Burning Mouth Syndrome"
In response to message #49
 
   Hi girls,

Thanks for replying.Yes teens think the internet and mobile phones were invented for their pleasure. Frankly I do not know how we got by without them?
Jag,how long was your thyroid gland enlarged for before it reduced?What caused it to go? How big was it? Could people
notice it? Is that when you first noticed bms?

Marie2 Tell me more about the ion test? What does it involve? How can it help you?

Reply when you can

Cheers Marie


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JAG
unregistered user
 Jul-09-05, 08:02 PM (CST)
 
51. "RE: Burning Mouth Syndrome"
In response to message #50
 
   Hi Marie,
My Thyroid gland is always larger than normal but with no discomfort. I still have a lumpy neck now. However when it became underactive, it really became swollen to the point of being uncomforable to move my head around, and It was uncomforable to swallow even. It was noticable by others, but after getting on thyroxin, it started to reduce in size, back to how it always is. Then when my thyroid started to function better itself, it swelled again as the medication I wa taking was too much, so we started reducing, again the lump got smaller.

I am currently reduced from 100mg thyroxin daily( started Jan 2003) to 25mg daily and hopefully after checking my thyroid function this week, the results will show that I can try cutting the med out altogther. Then in a couple more months I will test again, and if it has stayed within the normal range of function I will be off the meds for the time being(hopefully it will remain that way!)

I actually have my nerve damage from wisdom extraction, so dont suffer from BMS as such, although some of the treatments are similar. I never experienced this problem with my thyroid disfunction, more really anxiety and tiredness etc. I posted to you because I saw you were going to have the same proceadure as I had(Biopsy/FNA) so wanted to offer some advice there.
I am surprised though that the endocronologist hadn't heard of BMS because I knew it to be a symptom.

I hope you are finding some relief soon, as my pain/discomfort of nerve damage is on my bottom lip/chin and inside on the gum, and that is bad enough, but the tongue and the whole of the inside of your mouth burning sounds just awful!

Best wishes to you, and Marie2....erm..Too!
J


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marie2
unregistered user
 Jul-19-05, 11:13 AM (CST)
 
52. "RE: Burning Mouth Syndrome"
In response to message #50
 
   >Hi girls,
>
>Thanks for replying.Yes teens think the internet and mobile
>phones were invented for their pleasure. Frankly I do not
>know how we got by without them?
>Jag,how long was your thyroid gland enlarged for before it
>reduced?What caused it to go? How big was it? Could people
>notice it? Is that when you first noticed bms?
>
>Marie2 Tell me more about the ion test? What does it
>involve? How can it help you?
>
>Reply when you can
>
>Cheers Marie
>
Hi Marie,
I got my Ion test back. Still have to go over it better with my doctor.
What the Ion test does is ...it takes a look at your over all nutrition... then Metametrix tells you what vitamins you need to take to balance your body so it can function properly... and they put together a vitamin powder with the correct amount in it you need to take.
It looks like I have a problem with the b vitamins and fatty acids. I have to much of the bad fats. I also have some detoxification problems...I think that is why I react so badly to medications.
Dr Sherry Rogers who I spoke with (Environmental doctor) said I needed to do the Ion test first..to check my nutrition (vitamin deficiencies) then work on any toxcity I might have ..then if I have any heavy metal problems do that last. You have to have the support of good nutrition and detoxification before you can detox heavy metals.
I will let you know more as I get more information.

Take care,
Marie



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marie
unregistered user
 Jul-21-05, 06:26 PM (CST)
 
53. "RE: Burning Mouth Syndrome"
In response to message #52
 
   Good luck with it all Marie.

Marie


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marie2
unregistered user
 Jul-24-05, 09:43 AM (CST)
 
54. "RE: Burning Mouth Syndrome"
In response to message #53
 
   >Good luck with it all Marie.
>
>Marie

Marie are you still taking your b vitamins and if you are how are they working for you still?

Try the sublingual b12 and take a b-complex...it can't hurt. You need to take the b vitamins as a complex so they don't deplete one another.

Take care,
Marie2


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marie
unregistered user
 Jul-26-05, 07:55 PM (CST)
 
55. "RE: Burning Mouth Syndrome"
In response to message #54
 
   Hi marie2,
I stopped taking b vits when I had my thyroid problem thinking it may be linked. The past week I had two burn free days and tried to think what I had changed in my diet etc.Any way the burning came back.I will try the sub lingual b12 and complex but I just dont want to be taking it forever as who knows what side effects that could have?
Cheers Marie


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Jennifer
unregistered user
 Jul-31-05, 00:32 AM (CST)
 
56. "Does anyone have stinging pain in their hands"
In response to message #55
 
   I finished some dental work - a root canal and 4 back teeth fillings and 10 days ago my mouth starting stinging and burning so badly. Mostly in my tongue and lips. I spent days with a frozen water bottle pressed to my lips and tongue. My dentist thinks it's burning mouth syndrome, but I'm wondering if it's the metal fillings? The worst part is the TASTE!

I'm wondering if anyone is experiencing stinging pain in the feet and hands? It's the best in the morning and then around 3:00 p.m. it starts and my feet cramp when I lie down.

I went in for blood tests on Friday - I can't take much more of this. I want him to pull the metal fillings OUT but he doesn't think that's the problem. PLEASE give me some support and advice about the stinging pains in my hands and feet. I'm going to go buy B vitamins tomorrow.

It's been 10 days now and at least my mood isn't as dark as it was (I didn't know what was happening at first!).

Jennifer


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OS Assistant
unregistered user
 Jul-31-05, 07:35 AM (CST)
 
57. "RE: Does anyone have stinging pain in their h"
In response to message #56
 
   LAST EDITED ON Jul-31-05 AT 07:42 AM (CST)
 
Hi Jennifer


You must be going nuts with this. I cannot see the relationship with the hands / feet stinging and the mouth, perhaps minds greater than mine know the answer if nerve pathways could be connected.

That being said, I also have a stinging hand and foot that is a result of a herniated disc in the cervical spine. How long was your appointment? Did you have your neck bent backwards for a long period of time? It's common for people to flex their head to help the doctor gain access to their mouth especially when its an upper tooth. It can cause neck trouble,
If you answer yes. Go to your M.D. and let him know what has happened. He should be able to give you a strong anti-inflammatory to see if you get relief and he might requisition an x-ray of your cervical spine to see if any bony structure is pressing on the C4-5 or C5-6 nerve root. For now try ibuprophen and an ice pack on your neck (10 minutes on and 10 minutes off) for a few days and see if you get any relief.

Good Luck with this and let us know.


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Jennifer
unregistered user
 Jul-31-05, 01:54 PM (CST)
 
58. "RE: Does anyone have stinging pain in their h"
In response to message #57
 
   Thank you so much for answering me. The only thing that's changed is I've increased exercise and changed my diet (for the better) and at first thought it could be that. I changed my lipsticks, the water I drank, the foods I was eating, etc.

I wake up each a.m. and it's almost gone and then by about 3:00 p.m. (starts after lunch) it hurts so bad and I guess that makes me anxious because I feel like I can't start at work.

My blood tests will come back tomorrow - but they already tested me for diabetes (I thought it might be ketosis) and I'm OK.

The TASTE is almost worse than the pain. My dentist thinks it was the combination of the dental work and the antibiotic rinse he gave me. I just don't know what I'm going to do if this lasts years. I can't imagine it.

I'm going to go buy B vitamins tomorrow (although I already take a multi every day) and will continue to read. Thanks again for responding. Being able to talk about it really helps.


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Tressia
unregistered user
 Dec-04-05, 10:46 PM (CST)
 
59. "RE: Does anyone have stinging pain in their h"
In response to message #58
 
   >Thank you so much for answering me. The only thing that's
>changed is I've increased exercise and changed my diet (for
>the better) and at first thought it could be that. I
>changed my lipsticks, the water I drank, the foods I was
>eating, etc.
>
>I wake up each a.m. and it's almost gone and then by about
>3:00 p.m. (starts after lunch) it hurts so bad and I guess
>that makes me anxious because I feel like I can't start at
>work.
>
>My blood tests will come back tomorrow - but they already
>tested me for diabetes (I thought it might be ketosis) and
>I'm OK.
>
>The TASTE is almost worse than the pain. My dentist thinks
>it was the combination of the dental work and the antibiotic
>rinse he gave me. I just don't know what I'm going to do if
>this lasts years. I can't imagine it.
>
>I'm going to go buy B vitamins tomorrow (although I already
>take a multi every day) and will continue to read. Thanks
>again for responding. Being able to talk about it really
>helps.


hey , I have read alot of these listing here. Well I have a question. My problem is that my face stings and burns very badly. I hurt really bad in my neck on the same side. I do stay thirsty all day, but I can't really say that it burn that bad, it burns worse on my face on the jaw line, cheek line and above my brow area. My eye will water a little, not to bad though. I have had MRI's they found three lessions on the brain but they said that there wasn't enough change there after the 3month later MRI. They said at one time that I had MS. I also sting on my upper right side of my back,in my shoulder area, when I get my neck to pop it can feel s tad of releif but not enough for me to relax. I have gotten to where I have to Take 3 benedryl,one xanax, nd one sleep aid pill just to go to sleep at night. If there is any one out there that can help me with any kind of information I would be greatly apprecitive. Thanks so much Deda Moore.


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Reesatay
unregistered user
 Dec-05-05, 10:25 AM (CST)
 
60. "RE: Does anyone have stinging pain in their h"
In response to message #59
 
   Deda,

If this is nerve pain then antidepressant and/or antiseizure meds may help. If the chiro treatments seems to help your neck and shoulder pain then maybe some physical therapy would help too.

Also, for the surface burning try Lidocaine patches (RX) and/or Capsacian cream (OC). The Capsacian cream burns when you put it on and it may take a few weeks to notice a different. The Lidocaine patches can hurt too if your skin is sensative to anything touching it, but they could help the pain too in the long run.

Good luck

"T"


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Theresa
unregistered user
 Mar-15-06, 10:21 AM (CST)
 
66. "RE: Burning Mouth Syndrome"
In response to message #24
 
   I have had burning mouth syndrome for six years. I also can taste chemicals that are sprayed in the air.I can remember going to the dentist right before it happen but I cant remember what I went for.I also have a bulging disc at c5-6 in my neck.my burning is a little better but not gone.


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Linda D.
unregistered user
 Dec-08-05, 06:23 AM (CST)
 
61. "RE: Burning Mouth Syndrome-going in waves?"
In response to message #0
 
   I have suffered with BMS and pain for nearly two years now. It was a result of dental surgery. Afte 18 or so specialists, I have found that my mouth flares up, or goes in waves. I have found that stress definately causes flare-ups. My mouth burns and hurts all of the time, however it seems to quiet down and then, without notice, it flares up and about drives me nuts. Talking is the worst for me. The more I'm in a social situation, the more I pay for talking too much. I had placed strips on my upper gum (like the denture strips that I cut into small strips) These do help when I'm at my worst. I have decreased the Methylcobalamine shots to about once a week. Hair loss is the side effect of massive doses of Vitamin B's. And, I have found that it really doesn't help all that much with the BMS. Eating and drinking anything helps minimize the pain, but only for a brief minute or so. I try to accomplish as much as I can during the lulls and stay home and away from the telephone and people when it's flared up. It's been a horrible, life -altering situation for me-as I'm sure it has for all of you.


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healing mouth
unregistered user
 Dec-08-05, 11:09 AM (CST)
 
62. "RE: Burning Mouth Syndrome-going in waves?"
In response to message #61
 
   HI Linda, ditto, tho mine was 18 mths ago after wisdom extraction surgery. If only we could put the clock back. Yes its so life altering its unbelieveable. But we gotta stay focussed to get answers.
Please stay strong,I am praying for us to recover. TAke care


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Linda De.
unregistered user
 Dec-21-05, 01:37 PM (CST)
 
63. "RE: Burning Mouth Syndrome-going in waves? H"
In response to message #62
 
   Thank you. I have been reviewing some of the information that I found online and I'd like to know how some of you "read" this information:

"What can increase the risk? When the bitter taste is lost within the taste bud, the pain fibers surrounding that bud are the ones that experience a loss of inhibition and start becoming painful. An infection, a nutritional deficiency of B12, folate or iron can also damage taste buds."

I'm concerned about the following and how it reads: "An infection, a nutritional deficiency of B12, folate or iron can also damage taste buds."

Do you think "a nutritional deficiency of B12" is separate from the folate or iron? Or the folate OR iron, individually, could stir up this BMS?

Or, is this article stating that A nutritional deficiency of folate or iron could cause problems?

I have been taking shots of the Vitamin B methylcobalimine but have cut back considerably just to see if there would be a difference. I have had a pretty good two months. By no means has the pain gone away, but it a bit less. Wondering if this is just the "wave" pattern?

I just wish there was more study on all of this and someone, somewhere, knew a LOT about all of this.


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John Doe
unregistered user
 Jan-15-06, 05:27 AM (CST)
 
64. "RE: Burning Mouth Syndrome-going in waves? H"
In response to message #63
 
   I have had this problem for only a few months now and i have the deepest sympathy for anyone that has had to experience this. The pain i experience is in my lips not my mouth.There is visible redness which gives me anxiety about going out. Some days I wake up and decide to go back to sleep one or more times, so I can delay the pain that is about to come on. Eating seems to relieve the pain temporarily, hey at least i got an excuse if i get fat. I notice the "wave" patterns as well its been not that bad the past week or so while, almost a month ago it was pratically unbearable. It was so bad actually i contemplated suicide. Im taking so many vitamins and supplements its ridiculous, im starting to wonder if they could be part of the problem. I had a chipped tooth fixed and about a week later this condition developed. I have recently gotten most of that filling removed it seemed to help a little bit but the annoyance is still there. This condition can leave you feeling hopeless as the doctors/dentists i have seen are mostly clueless, no cause or solution whatsoever.

I will pray for all of us to get better.


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drgnfli00
Member since Apr-3-06
1 posts		 Apr-03-06, 10:46 PM (CST)
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69. "RE: Burning Mouth Syndrome-going in waves? H"
In response to message #64
 
   Hello Everyone...

I feel like I have to throw in my two cents as well. I am a 27 year old male that is considered to be in healthy condition. About 5 months ago I developed a slight burning sensation on the tip of my tongue. It slowly spread down the right side of my tongue towards the back of my tongue. I did my own R&D and did some of my own investigative work. I stopped using the alcohol based mouth washes and changed the toothpaste. Unfortunately this did nothing to help the problem. As is the case with most everyone else that has suffered with this problem there are no visible signs of problems. I consulted my Dr who started me on Nystatin for Candia infection. For two weeks I was to enjoy the tasty Nystatin mouth wash only to have the same sensations remain two weeks later. When the burning continued and also intensified at times he opted to send me to an ear nose and throat specialist. This Dr’s oral examination turned up no visible problems and I was again treated to a delicious mouthwash cocktail. This time it not only included Nystatin, but also Hydrocortisone, Tetracycline and some other anti fungal that I cant recall the name. A month later and not only was I left with a bad taste in my mouth literally from the medicine but the burning remained. The Dr was happy to rule out Candia, bacterial infections, and oral allergies. Left with nothing else in his bag of tricks he threw up his hands and said I have BMS. The speech given was, I am sure, the same that many of you have been given. No obvious known cause and no reliable treatment. He mentioned anti-depressants which he was reluctant to try and I flat out refused. He also told me to try capsaicin (derived from the seeds of hot peppers). Haven’t yet found a good oral source was wondering if this would even work? Any luck?

There is only one parallel that may have a weak link. I also have been diagnosed with GERD (acid reflux disease). I am taking Nexium and have been for about two years. The symptoms are mostly contained with my treatment so I don’t believe that there is any reason to believe that the reflux is causing a problem. But I figured I would mention it.

The pain I have has never escalated to severe I can’t stand it pain. At the most it is moderate and will usually only remain moderately painful for a few days before receding back to a lesser level of pain. There are days when it doesn’t hurt at all. But for the most part it has remained a problem. I have had pain mostly on my right side of the tongue, the tip of the tongue, and the upper palette again along the right side. I have never felt any abnormal pains on the left side at all. At times when the pain is worse it feels as if my tongue is swollen and it feels as if there is something stuck in the back of my throat. Possibly in relation to my tongue swelling I don’t know.

Like I said I just wanted to jot down some info on me so that other could compare notes. It seems that is all you can find on this so far. I only have a few questions. One I mentioned above. Has anyone heard of capsaicin being used as an oral treatment for BMS and what are the results? Curious to know if this generally remains the same level of pain or have people found that it continues to get worse? I know that everyone is an individual and obviously results will vary. Thank you in advance for any and all help.

Andrew


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kbginak
Member since Jul-13-08
1 posts		 Jul-13-08, 08:22 PM (CST)
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71. "RE: Burning Mouth Syndrome-going in waves? H"
In response to message #69
 
   >Hello Everyone...
>
>I feel like I have to throw in my two cents as well. I am a
>27 year old male that is considered to be in healthy
>condition. About 5 months ago I developed a slight burning
>sensation on the tip of my tongue. It slowly spread down
>the right side of my tongue towards the back of my tongue.
>I did my own R&D and did some of my own investigative work.
>I stopped using the alcohol based mouth washes and changed
>the toothpaste. Unfortunately this did nothing to help the
>problem. As is the case with most everyone else that has
>suffered with this problem there are no visible signs of
>problems. I consulted my Dr who started me on Nystatin for
>Candia infection. For two weeks I was to enjoy the tasty
>Nystatin mouth wash only to have the same sensations remain
>two weeks later. When the burning continued and also
>intensified at times he opted to send me to an ear nose and
>throat specialist. This Dr’s oral examination turned up no
>visible problems and I was again treated to a delicious
>mouthwash cocktail. This time it not only included
>Nystatin, but also Hydrocortisone, Tetracycline and some
>other anti fungal that I cant recall the name. A month
>later and not only was I left with a bad taste in my mouth
>literally from the medicine but the burning remained. The
>Dr was happy to rule out Candia, bacterial infections, and
>oral allergies. Left with nothing else in his bag of tricks
>he threw up his hands and said I have BMS. The speech given
>was, I am sure, the same that many of you have been given.
>No obvious known cause and no reliable treatment. He
>mentioned anti-depressants which he was reluctant to try and
>I flat out refused. He also told me to try capsaicin
>(derived from the seeds of hot peppers). Haven’t yet found
>a good oral source was wondering if this would even work?
>Any luck?
>
>There is only one parallel that may have a weak link. I
>also have been diagnosed with GERD (acid reflux disease). I
>am taking Nexium and have been for about two years. The
>symptoms are mostly contained with my treatment so I don’t
>believe that there is any reason to believe that the reflux
>is causing a problem. But I figured I would mention it.
>
>The pain I have has never escalated to severe I can’t stand
>it pain. At the most it is moderate and will usually only
>remain moderately painful for a few days before receding
>back to a lesser level of pain. There are days when it
>doesn’t hurt at all. But for the most part it has remained
>a problem. I have had pain mostly on my right side of the
>tongue, the tip of the tongue, and the upper palette again
>along the right side. I have never felt any abnormal pains
>on the left side at all. At times when the pain is worse it
>feels as if my tongue is swollen and it feels as if there is
>something stuck in the back of my throat. Possibly in
>relation to my tongue swelling I don’t know.
>
>Like I said I just wanted to jot down some info on me so
>that other could compare notes. It seems that is all you
>can find on this so far. I only have a few questions. One
>I mentioned above. Has anyone heard of capsaicin being used
>as an oral treatment for BMS and what are the results?
>Curious to know if this generally remains the same level of
>pain or have people found that it continues to get worse? I
>know that everyone is an individual and obviously results
>will vary. Thank you in advance for any and all help.
>
>Andrew


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BMS
unregistered user
 Mar-23-06, 12:44 PM (CST)
 
67. "RE: Burning Mouth Syndrome-going in waves? H"
In response to message #63
 
   Check out Mayoclinic.com and type in burning mouth syndrome under search


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PAULA 7
Member since Apr-2-06
1 posts		 Apr-02-06, 03:18 AM (CST)
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68. "RE: Burning Mouth Syndrome-going in waves?"
In response to message #61
 
   PAULA Hi, I have that same burning pain with tingling, numbness and tightness in my bottom rt. side lip and rt. side jawline. I've had steroid shots that are very painful and only gave me a little comfort for about 2-2-1/2 hours. Medications that only made me sleepy and I woke up in more pain. I've tried over the counter-drugs with no long term healing. I want to try some adult oral-gel to see if it will help numb me out in some way but I know this burning pain like others who are suffering with this is very deeply rooted and needs medical attention from within the gums, nerves, muscles and joints. These all work together for mouth movement and I hurt when I talk too long or yawn too wide or fold in my bottom lip. I hope you feel better soon and let us all know if a cure is ever invented. I see now, that wisdom/teeth extraction is hard on many.


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skennison
Member since May-7-08
3 posts		 May-07-08, 07:02 PM (CST)
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70. "RE: Burning Mouth Syndrome-going in waves?"
In response to message #61
 
   I agree with your phrase life altering situation. I have suffered with BMS for two years. Started after a botched dental treatment. I experienced a horrible metallic taste for about nine months and then changed to a terrific burning on the tip of my tongue. I found a doctor at the University of Kentucky whose practice is almost exclusively BMS patients. He treats with clonazapam and 60 percent of his patients get relief from .5 mg and then if that doesn't help he ups it to 1 mg and this helps another 20 percent. Unfortunately, I am in the 20 percent he has not been able to help. Lucky me. Most of my days are so terrible that I would not care if I wouldn't wake up. I can only sleep with huge dosages of pain medication and the clonazapam which I am not supposed to do together, but if I don't I would never sleep. Anyway, you might check with your dr. about clonazapam. Good luck - I hope you get relief. Sandy


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