Hello. It sounds like your husband has "burning tongue syndrome" or what we call "glossodynia". Has he seen a dentist, in addition to doctors?
yes, he has seen a dentist too and he too finds no proble.
So the exam is normal? No lesions, rashes, redness, thrush, etc?
there is redness but nothing like rash or thrush etc
How is his saliva production? Ample, or does it tend to be low, i.e. dry?
he feels it dry at times especially at nights.
actually when he burps he gets a little relief.
is it anything to do with his nerves?
Studies indicate that candidiasis (a low grade fungal infection) in conjunction with low salivation may induce pain in the tongue without other abnormalities. Has he been tried on an antifungal mouth rinse or pills?
yes we have tried everything but it's strange nothing seems to work
we have even changed toothpastes but noting seems to work. very frustrating
And he has had his vitamin levels checked, or been on a multivitamin?
yes he is having vitamins at the moment but finds little or no relief - the pain comes and goes. One day he may feel good then again, back to square one!
It would be unusual to be nerve related unless he had signs of peripheral neuropathy elsewhere (e.g. feet, hands) or had a strong risk factor such as diabetes, low thyroid, low vitamin B12 etc.
nothing as above
he has always been in good health otherwise - just this tongue burning he is frustrated - has lost a lot of weight too.
Has he tried a nerve-stabilizing medication such as gabapentin or pregabalin. These are wonderful meds for calming down rogue nerves. Whatever is irritating the nerves going into the tongue may be mitigated with this type of treatment.
i dont think so that these kinds of medication has been prescribed.
You should ask his GP or a neurologist about this. Has he tried any topical agents, such as viscous lidocaine? They can often provide temporary relief.
i am looking for a permanent solution -
There are also saliva replacement products available that might help.
the doctor applied some kind of gel on his tongue - it was again temporary!
Because this can be such a difficult entity to pinpoint and treat, patients often need to use a combination of strategies.
exactly, never heard of this sickness before!
I would try the gabapentin. Because it can take a few weeks to kick in for some, I would suggest you use whatever topical agents in the meantime that you can find for temporary relief, and use a saliva replacement agent to keep the tongue rinsed, effectively, during the day and night.
Gabapentin - are these tablets?
Yes this is a nerve-related pain medication that is now being widely used for many neuropathic pain conditions, including neuropathies caused by diabetes, B12 deficiency, migraines, etc. It is very well tolerated in most, and the dose can be increased to very high levels if necessary because of its good safety profile.
and what is the dosage?
There are various regimens one can use. Many start with 300mg at night as it is sometimes a little sedating. Then the dose is increased slowly to twice daily, then 3 times daily, as needed.
this is again temporary - isn't it?
but of course no harm trying if it bring relief.
Not really, because if it works you have a solution that can last a lifetime. Some individuals even get off the medication once things improve. If they need to go back on later, they can.
have to do another trial run.
has it got anything to do with diet?
that is the nature of this entity...but hang in there, as most are able to find relief eventually...sometimes the condition seems to burn itself out, as well.
it usually is not related to diet, unless there is a deficiency or malabsorption syndrome
we think we are just not lucky
BTW he has done 3 endoscopies too and everything was normal!
your luck will change eventually. it is probably hard to see this at this point, but these conditions often improve as mysteriously as they come on...just be sure to address any depression that might ensue because of this...a mood disorder could perpetuate or worsen the symptoms...also consider biofeedback and cognitive behavioral therapy, as these types of self-help methods are often helpful
Are you still there? Did you have any further questions?