burning mouth syndrome 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

@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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@ristu

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

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It helps for 2-3 hours, sometimes longer

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@ristu

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

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@ristu I had been taking 2500 mcg that dissolve quickly in the mouth; Nature's Bounty is the one I use right now. Other brands have been fine as long as they dissolve before swallowing. My blood work shows that I "have too much Vit. B 12" but I'm unwilling to go off it! I've lately been taking one of these every other day and follow that same dosage with Liquid Vit. D….5 drops = 25 mcg. Just started taking Vit B Complex along with these two since I'm sure it's better to have a balance of B Vit.

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@mollyquilter

@ristu I had been taking 2500 mcg that dissolve quickly in the mouth; Nature's Bounty is the one I use right now. Other brands have been fine as long as they dissolve before swallowing. My blood work shows that I "have too much Vit. B 12" but I'm unwilling to go off it! I've lately been taking one of these every other day and follow that same dosage with Liquid Vit. D….5 drops = 25 mcg. Just started taking Vit B Complex along with these two since I'm sure it's better to have a balance of B Vit.

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Ok.A few questions.
Who told you how much to take ? Doe it bring relief ? Reduced pain and /or inflammation ? Thanks, Stu

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@mamajomclane

@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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I went up to .75mg per day ofor clonazepam.

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@ristu

Ok.A few questions.
Who told you how much to take ? Doe it bring relief ? Reduced pain and /or inflammation ? Thanks, Stu

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@ristu No one told me to take the Vit. B 12; I just discovered that it worked for me by beginning to take it for some other reason. I have Fibromyalgia and keep up with the latest information as much as I can. The Vit D 3 is because I live in rainy Seattle where we don't have a lot of sunshine in the winter/spring months.

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@ristu

Ok.A few questions.
Who told you how much to take ? Doe it bring relief ? Reduced pain and /or inflammation ? Thanks, Stu

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@ristu I don't have any pain in my mouth now, unless I eat really acidic foods such as lemons, strawberries, walnuts, and raw pineapple. When I was younger none of these things bothered me and I ate a lot of them. Even when walnuts are baked or cooked, they continue to make my tongue and mouth hurt.

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@mollyquilter

@ristu No one told me to take the Vit. B 12; I just discovered that it worked for me by beginning to take it for some other reason. I have Fibromyalgia and keep up with the latest information as much as I can. The Vit D 3 is because I live in rainy Seattle where we don't have a lot of sunshine in the winter/spring months.

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Okay then. So did the vitamin B12 actually get rid of most of the pain and swelling? Thanks Stu

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@ristu

Okay then. So did the vitamin B12 actually get rid of most of the pain and swelling? Thanks Stu

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B12 sublingual does NOT take away my burning mouth-(are you talking about B-12 injections perhaps?)

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@mamajomclane

B12 sublingual does NOT take away my burning mouth-(are you talking about B-12 injections perhaps?)

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No…pills….

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@ristu

Okay then. So did the vitamin B12 actually get rid of most of the pain and swelling? Thanks Stu

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@ristu I had mouth sores on each side of my mouth at the back of my teeth (inner cheek sides) and yes, the Vit. B12 did take them away. When I eat something very acidic, I get a slight soreness, and it goes away soon. While I'm not allergic to Walnuts, Raw Pineapple, and Strawberries, they do affect my mouth and make my tongue sore, as well. Years ago, I developed a very sore mouth and tongue from taking Vitamin A and coincidently, or not, my mouth sores came at this time too. While taking the Vit. A, my mouth was so sore I couldn't eat very well. My sister, who also takes supplements for Fibromyalgia, said she had the same symptoms when taking Vit. A.
I urge you to check out a Naturopath whose medical practice also contains information on vitamins, foods, and body depleted hormones,, etc.

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@mamajomclane

B12 sublingual does NOT take away my burning mouth-(are you talking about B-12 injections perhaps?)

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@mamajomclane Actually, no, I do mean B-12 over the counter vitamins from a reputable source. I recommend the company: To Your Health out of Arizona who've been publishing studies of Fibromyalgia and worked with doctors (who also happen to have Fibromyalgia) and now sells supplements to alleviate Chronic Pain, Arthritis, and Fibromyalgia which covers formulas for Sleep, Pain, Stress, and Energy Depletions. I've used their products for over 20 years.

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@mollyquilter

@mamajomclane Actually, no, I do mean B-12 over the counter vitamins from a reputable source. I recommend the company: To Your Health out of Arizona who've been publishing studies of Fibromyalgia and worked with doctors (who also happen to have Fibromyalgia) and now sells supplements to alleviate Chronic Pain, Arthritis, and Fibromyalgia which covers formulas for Sleep, Pain, Stress, and Energy Depletions. I've used their products for over 20 years.

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Hi Molly. Thanks for the recommendation of vitamin B. So, I purchase jarrow formulas methyl B12, which is the best for nerve issue conditions. I have 1000 micrograms ,which I believe is 1 mg. It may be too much to tolerate, so I'm going to break it up, and try a little bit at a time. What was the dose that you're taking, and how often do you take it. What is the total amount of dosage per day? With burning mouth syndrome, I have burning in the back of my throat, uvula ,and both sides of the back of my mouth. Thanks Stu.

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