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

@bhavesh

All, My BMS is almost cured. I don't wake up to burn … i do get it a bit and tongue feels sandy at times but no burns. Please read my earlier post on what I did. thanks much. bhavesh

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Also have hypothyroid issues.

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@bhavesh

I suffered from the BMS non-sense for 2 months. Nothing was helping until I started on cannabis oil (CBD) a week back. Now I feel 90% better. I do get stings, sandy feeling on the tongue and light burning a few times a day but overall I am feeling much better.

Here is some sequence of events
8/Jan/19 – found thyroid t4 was high (1.8) and tsh was suppressed (0). Thyroiditis was detected. No medicine was required and thyroid was only a point higher. Doc asked to just wait it out.
Jan through Feb – Mild pain in the throat continues. Throat hurts, burns and requires constant clearing. Mild burning in the sinus area.
14/Mar/19 – Thyroiditis still not resolved. Further diagnosed with LPR (silent Gerd). Burning in the sinus, throat and lumpy feeling in the throat. Started omeprazole (Prilosec).
16/Mar/19 – Horrible burning in the tongue, mouth. Continued Prilosec for a month as BMS may come from silent GERD. DOC prescribed magic mouth wash with a formulation that contained anti-acid, anti-histamine, anesthetic, corticosteroids and anti-fungus.
Mid Mar – Early April – NO improvement for BMS. Magic mouth wash was helping for a little while.
12/APR/19 – Another ENT visit. Doc suspects jaw grinding is causing BMS. Stopped Prilosec
24/APR/19 – Tested for Hpylori, B-12, folate, Mouth dryness (Nuclear Antibody), fungus, CBC, CRP, ESR, hbg A1c, Fungus mouth culture – All normal. Doc still prescribed Diflucan (antifungal) as sometimes fungus does not culture.
25/APR/19 – Decided to try CBD OIL vs. trying Diflucan.
30/APR/19 – Measurable symptoms of relief from BMS. keeping fingers crossed. My thyroid is still a point higher.

I did not take amitryptiline yet but had the things not improved, that was next for me. I just decided to give CBD a try.

** i feel Omneprazole triggered my BMS but doc thinks that is purely coincidental.

I hope this helps others going through BMS. All the best!!

bhavesh

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Can you share with us the brand, #mg and THC strength, frequency etc. thank you for sharing

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@mamajomclane

Can you share with us the brand, #mg and THC strength, frequency etc. thank you for sharing

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Hi. Regarding the use of THC and or CBD oil. I am curious as to how the CBD oil is administered. Is it topical? Do you take a pill? How long are the results? Thanks Stu.

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Hi. I'd be interested in knowing how the CBD is administered. Is it topically applied to the burning areas? Is it a pill of CBD that you take? How long are the lasting effects? Regards,Stu

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@ristu

Hi. I'd be interested in knowing how the CBD is administered. Is it topically applied to the burning areas? Is it a pill of CBD that you take? How long are the lasting effects? Regards,Stu

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I use Charlotte's web highest potency (149$ bottle). I take 2 times half of the tincher (4-5 drops). I stopped CBD for about 2 weeks in the middle. My BMS is acting up again so started taking CBD again 3 days back. I stopped because I had Afib that needed to be taken care off. I am not sure if CBD caused it though. I will post again if my BMS goes away. Please take some consultation from your doc with CBD as it is not for everyone.

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Thank you – keep the info coming – helps us all

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@mamajomclane

I have had 2 Class 4 Laser treatments this week, Monday and today. My schedule has been filled with out of town company this week so hard to determine if any improvement yet….I will advise next week. Joyce

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Are you still getting laser treatments and are they helping?

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@meadowhouse

Are you still getting laser treatments and are they helping?

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Unfortunately I had 7 and did not help me.

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@mamajomclane

Unfortunately I had 7 and did not help me.

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I have had six so far with no change. My dentist really wants to help, I think he feels bad for me because I am dealing with other health issues right now. He gave me my last two treatments at no charge. Now I don’t know if I should continue?
I have tried all the meds everyone has mentioned to no avail so not taking anything now.
How long have you suffered with Bms? This is my 8th year and it has never gone away, not for even a day😞 I just turned 74 and I would be interested in hearing your story when you have the time.
Thanks for listening!

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@meadowhouse

I have had six so far with no change. My dentist really wants to help, I think he feels bad for me because I am dealing with other health issues right now. He gave me my last two treatments at no charge. Now I don’t know if I should continue?
I have tried all the meds everyone has mentioned to no avail so not taking anything now.
How long have you suffered with Bms? This is my 8th year and it has never gone away, not for even a day😞 I just turned 74 and I would be interested in hearing your story when you have the time.
Thanks for listening!

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Hi. I feel your pain, literally. I'm 60 now. I've had BMS for three and a half years. I am going to Tufts dental school in Boston who claims they treat BMS. I will listen to what they have to say, but I'm not positive about what they're going to tell me. I am going to look into lllt the laser treatment. Don't know where in my area they even do that type of thing? Regards Stu.

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Hello, Fellow Afflicted-
I haven’t posted in quite some time, primarily because there has been no change in my status. I am into my 6th year with BMS, and so far no treatment has been effective. I have always put my lot in with Western Medicine, but desperation can drive us to us expand our comfort zones. I have an appointment next month with someone who practices Vibrational Therapy. It’s $$$ and a bit out there, and I’ve no idea what to expect, but it does seem to me there is an electrical component to my particular type of BMS. My mouth constantly feels like there is a current running through it, so I thought, “What the heck? I’ll try a different approach.” If anything comes of it, you’ll be the first people I tell.

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Just a question did you ever try carbamazepine, My wife just started with a 100mg twice a day dose. Any one out there that had tried it. Good luck in your coming treatment and thank you for the information.

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@rgpadilla

Just a question did you ever try carbamazepine, My wife just started with a 100mg twice a day dose. Any one out there that had tried it. Good luck in your coming treatment and thank you for the information.

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No, that one I have not heard of. Thanks for mentioning it; I will research it.

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@meadowhouse

I have had six so far with no change. My dentist really wants to help, I think he feels bad for me because I am dealing with other health issues right now. He gave me my last two treatments at no charge. Now I don’t know if I should continue?
I have tried all the meds everyone has mentioned to no avail so not taking anything now.
How long have you suffered with Bms? This is my 8th year and it has never gone away, not for even a day😞 I just turned 74 and I would be interested in hearing your story when you have the time.
Thanks for listening!

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What is the treatment you had? I’m just seeing this. My dentist continues to prescribe Magic mouthwash and it helps long enough to help me get to sleep. Occasionally I use throughout the day and I swallow the stuff as my throat fires as well. I call it fire as that’s what it feels like and I definitely know stress makes it worse. I tried bleaching my teeth today in my Invisalign trays. Not smart.

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@twentyfour7

Hello, Fellow Afflicted-
I haven’t posted in quite some time, primarily because there has been no change in my status. I am into my 6th year with BMS, and so far no treatment has been effective. I have always put my lot in with Western Medicine, but desperation can drive us to us expand our comfort zones. I have an appointment next month with someone who practices Vibrational Therapy. It’s $$$ and a bit out there, and I’ve no idea what to expect, but it does seem to me there is an electrical component to my particular type of BMS. My mouth constantly feels like there is a current running through it, so I thought, “What the heck? I’ll try a different approach.” If anything comes of it, you’ll be the first people I tell.

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Good luck. Much appreciated. Stu

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