Burning Mouth Syndrome. I have it very severe.

Posted by mygrigio @mygrigio, Aug 5, 2011

I am a 76 year old women and have had this condition for almost a year. it is getting worse everyday. been to many doctors and not one of them has heard otf it, I am getting desperate

@jshdma

@ ristu I have BMS for 3-4 years, with none of those conditions, and like you, nothing works. The most significant fact here I think is that the medical profession has no idea what causes it. Thanks for info.

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I have had BMS for the past 3 to 4 years and I’ve recently tried this GABA product- One spray sublingual when the burning is worse mid afternoon. But this is just a supplement to my amitriptyline which I take 10 mg first thing in the morning, another 10 mg around noon and 20 to 30 mg just before bedtime.

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@patriciao

I just joined the group today. I have had BMS for over a year. I have also been diagnosed as having Sjögren’s syndrome and celiac disease. I follow a gluten free diet and take a low dose of prednisone and hydroxychloroquine. I use Biotene toothpaste and mouthwash. I tried pilocarpine but hate the side effects. Any suggestions?

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I have had severe acid reflux for many years. It has progressed from esophagus to mouth to nose causing burning sensations. I also have Sjogrens that exasperates this condition. I take Protonix bid and Zantac at bedtime and use biotene in all its forms. This has been the most helpful for me and may help you.

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@uncbball

I have had severe acid reflux for many years. It has progressed from esophagus to mouth to nose causing burning sensations. I also have Sjogrens that exasperates this condition. I take Protonix bid and Zantac at bedtime and use biotene in all its forms. This has been the most helpful for me and may help you.

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Just curious as I also have burning mouth syndrome and I feel it’s in my throat as well. Hard to know if acid reflux or BMS. Does your throat burn as well?

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@mamajomclane

I have had BMS for the past 3 to 4 years and I’ve recently tried this GABA product- One spray sublingual when the burning is worse mid afternoon. But this is just a supplement to my amitriptyline which I take 10 mg first thing in the morning, another 10 mg around noon and 20 to 30 mg just before bedtime.

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Is GABA spray a prescription ?

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Destinnana-no I bought GABA on Amazon

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I have Sjogren's and two of the symptoms of this disorder are mouth sores and vulvodynia. My mother also had this and now one of my half-sisters, as well. I had severe mouth sores for several years and none of the dr.s or dentists that I consulted (at least 7) had any idea for this. I discovered 1st that it's common with menopause (why don't doctors know this???) and that taking Vit. B 12 daily has made it normal (unless I eat walnuts, raw pineapple, or strawberries which my allergist says are all extremely acidic and affect the mouth.) Perhaps that would help you; I take the ones that dissolve under your tongue and also Vit. D3 liquid drops as well. For vulvodynia, (also called Burning Vulva) my sister uses a hormone cream in the vagina; because taking Hormone Replacement Therapy triggered breast cancer for me 20 years ago, I keep my own vulvodynia at bay with one of the oldest SSRI's (Selective Seratonin Reuptake Inhibitor) called Amitriptyline) and it keeps this from causing the pain I had without it. I hope you have some relief from the pain soon!

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l have had this for 10 years and can get no help

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@mollyquilter

I have Sjogren's and two of the symptoms of this disorder are mouth sores and vulvodynia. My mother also had this and now one of my half-sisters, as well. I had severe mouth sores for several years and none of the dr.s or dentists that I consulted (at least 7) had any idea for this. I discovered 1st that it's common with menopause (why don't doctors know this???) and that taking Vit. B 12 daily has made it normal (unless I eat walnuts, raw pineapple, or strawberries which my allergist says are all extremely acidic and affect the mouth.) Perhaps that would help you; I take the ones that dissolve under your tongue and also Vit. D3 liquid drops as well. For vulvodynia, (also called Burning Vulva) my sister uses a hormone cream in the vagina; because taking Hormone Replacement Therapy triggered breast cancer for me 20 years ago, I keep my own vulvodynia at bay with one of the oldest SSRI's (Selective Seratonin Reuptake Inhibitor) called Amitriptyline) and it keeps this from causing the pain I had without it. I hope you have some relief from the pain soon!

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Hi, thanks for responding to my message. How much vitamin B12 and Vitamin D do you take daily? Thanks Stu

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@destinnana

Just curious as I also have burning mouth syndrome and I feel it’s in my throat as well. Hard to know if acid reflux or BMS. Does your throat burn as well?

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Yes, back of mouth, throat, and uvula. Stu

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@mamajomclane

I have had BMS for the past 3 to 4 years and I’ve recently tried this GABA product- One spray sublingual when the burning is worse mid afternoon. But this is just a supplement to my amitriptyline which I take 10 mg first thing in the morning, another 10 mg around noon and 20 to 30 mg just before bedtime.

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How effective is the Gaba spray for the pain? Thanks Stu

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@jshdma

@ ristu I have BMS for 3-4 years, with none of those conditions, and like you, nothing works. The most significant fact here I think is that the medical profession has no idea what causes it. Thanks for info.

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I agree with you the medical professions don't seem to have a grip on BMS. I do believe though that the syndrome is neuropathic so I think that some medications that are nerve agents will work somewhat. However just like you the current medications have done nothing for me and I've tried them for almost a month. Regards Stu

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@ristu
Have you gradually increased your dosage? Amitriptyline stopped working for me after 10 mos of working great. I gradually went completely, took a couple months break then start back up gradually, eventually getting to 40-50 mg in split dose (10 mg am, 10 mg mid-day, sometime 10 mg early evening and 20-30 an hour before bed….this works somewhat, never really gone like the first 10 mos of 30 mg at bedtime- good luck

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