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

@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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Hi,
So happy to hear from you again. I really do not know how to contact anyone via this email.
I have an iPad and not too good with it. I really wish I had your phone number as talking so much better. Is that allowed.
I wanted to mention that I feel no pain when I am eating but must keep, the weight down. I suppose the painless eating is again the idea of keeping jaw apart. Right nowhere I am wearing my lower bite plate. My friend made me a few for upper and a few for lower. I rotate them sometimes.
Please let me know how to reach you, but in the meantime please reconnect with me.
Good luck.

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@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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I’m happy to hear from you.
I have no problem giving you my phone number.I just want to be sure it’s kept private.
I’ll try to contact Mayo clinic,and ask them about the privacy law..

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@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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Maggie 45, thank you for the feedback. You are very expressive in your description of this condition. As to eating socially, I understand your situation very well. It does impact social relationships. My daughter’s wedding is coming up soon, and I’m very stressed about undergoing all the events, especially the wedding day. I am willing to be contacted by phone by you, but I don’t know how the procedure is set up. It does help to have people who are willing to share their experiences, but I’ve found that it’s difficult to find methods that work for all. Thanks.

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@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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I’m so happy for your daughter.
Don’t put to much thought into it.Sometimes we awfulize about things.
Be positive about the upcoming event.
You will be so preoccupied you won’t even notice.
Why don’t we try facebook.
I will friend you,and privately we can share phone numbers.
My name is Patty Cataldi,I’m sure that will work..Good luck.
Hope to hear back from you..

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@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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@sheetrock0131 and @lauren123, you can use the private message function to exchange phone numbers safely. However, I also encourage you to continue to share here on this forum as the benefit for many is strong and extremely valuable.
So glad you have found support.

Liked by lauren123

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@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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Are you suggesting we use messenger on an I-Phone? Thank you for the encouraging words.

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@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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You can private message right here on Connect. Here’s how:
1. Click the @username of the person you wish to PM. This will take you to their profile page.
2. Click “Send Private Message” on their profile page.
Happy connecting.

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I have a correction to my previous message: Instead of Crest Tartar protection tooth paste, I now use Jason Sea Fresh (Deep Sea Spearmint) as a tooth paste after meals or snacks. It takes away the bitter taste on my tongue from food, and it is milder than some toothpastes. I got it at a health food store. This Jason product may be available as a mouthwash, too.

God bless all of you. My prayer for you: That you may find solutions that are not extreme or costly.

It seems that doctors and dentists don’t have a clue–and I found that they tend to try medicines and procedures when they don’t really know what to do.

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@nanettehathaway

I have had neuropathic burning mouth syndrome since Dec. 2010. Most Drs. I’ve seen have never heard of it. I am on gabapentin and Lyrica, they are not working. Does anyone know of a specific Dr. who treats this disorder. I am in pain 24 hrs. per day, it is very SEVERE pain. Need help and a support group. HELP, NANETTE

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I agree as well.clonazepam is same as klonipin. It does help.
I don’t like taking it,but it seems to be the only medication that all burning mouth recipients use,in addition to cymbalta,or lyrica.
God bless all who suffer with this debilating condition.

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As a long-term clonazepam user who is suffering the prolonged and intense agony of withdrawal from this medication after it was no longer effective, I’m compelled to advise caution in considering its use for more than a week or two. Please access “Benzodiazepine Withdrawal Syndrome” in Wikipedia and the “BenzoBuddies” online forum for further information.

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Hi, @cperaino. Welcome to Connect. How long have you had burning mouth syndrome? How are you managing the symptoms of the condition as you taper off clonazepam?

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Actually, I don’t know whether or not I have burning mouth syndrome. I accessed this site because for the past 3 months I have been experiencing a constant very unpleasant taste in my mouth coupled with some burning, though not at the level described by others in the group. Perhaps it’s part of the benzodiazepine withdrawal syndrome, since I have recently found that others on the BenzoBuddies site have described similar symptoms. My prior post was prompted by a concern that those of you who are resorting to the use of Klonopin for relief from the trials of burning mouth syndrome may be letting yourselves in for a much worse situation down the road. I was on Klonopin (2.5mg/day) as prescribed for more than 25 years and tapered off over the period of about a year after realizing that numerous mysterious symptoms that I had been experiencing over several year were a consequence of tolerance withdrawal. The symptoms (agitation, insomnia, panic, dizziness, burning skin, head pressure, cognitive fogginess, air hunger, nerve pain, headaches, feelings of despair upon waking) worsened during the taper and have persisted for the 10 months that I have been completely off the drug, with a faint indication that their severity is slightly diminishing. Given my age (82), the glacial pace of recovery (reflecting the gradual restoration of down-regulated synaptic GABA receptors) leaves little cause for celebration. In any case, on the basis of my experience as well as those of may thousands of benzo users (see BenzoBuddies) I was motivated to warn you against the possibility of adding immeasurably to your suffering by going down the benzo route. In my opinion, as well as that of myriads of current and former benzo users, these drugs should be outlawed.

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@adkhs3333

Thank you so much for the input! Excellent idea about the toothpaste… I will do that immediately. We are in a Rehab Center (due to hubby’s nutrition being severely impacted by a swollen, painful tongue) and they do have him on Magic Mouthwash… and I think it does help. As to the oral surgeon… we did go to one and he said he doesn’t treat TMJ or BMS … then referred us to another dentist that bills himself as a “maxillofacial pain pathologist” … very expensive and takes no insurance. Since we were already with a TMJ “specialist” who is willing to treat the BMS we didn’t go to the “pathologist” yet, but we may HAVE to soon. Not only is BMS starving my little hubby of nutrition, but it’s eating into our life savings also! Again… thank you for answering me. It’s so good to know there are others out there going through the same thing. I don’t feel quite so alone. God Bless you!!!

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Thank you, but I could not figure out how to connect. I do suffer with severe bms and have posted ideas as to using very thin bite plates to relieve the pain. Sorry I am so lacking in using my iPad in detail.Connielaine

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@adkhs3333

Thank you so much for the input! Excellent idea about the toothpaste… I will do that immediately. We are in a Rehab Center (due to hubby’s nutrition being severely impacted by a swollen, painful tongue) and they do have him on Magic Mouthwash… and I think it does help. As to the oral surgeon… we did go to one and he said he doesn’t treat TMJ or BMS … then referred us to another dentist that bills himself as a “maxillofacial pain pathologist” … very expensive and takes no insurance. Since we were already with a TMJ “specialist” who is willing to treat the BMS we didn’t go to the “pathologist” yet, but we may HAVE to soon. Not only is BMS starving my little hubby of nutrition, but it’s eating into our life savings also! Again… thank you for answering me. It’s so good to know there are others out there going through the same thing. I don’t feel quite so alone. God Bless you!!!

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You answered perfectly @connielaine. Just keep doing what you’re doing. Your messages are being posted to the message board.

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Several of you have talked about taking clonazepam (Klonopin) to help relieve burning mouth syndrome. We took your questions about its use and withdrawal to a Mayo Clinic pharmacist. Here is what she responded:

“Clonazepam (Klonopin) is one medication in a class of medications called benzodiazepines. These medications are used in a variety of conditions and can cause dizziness and drowsiness. Patients who are taking benzodiazepines should avoid activities that require attention or coordination while these effects persist. Patients should not drink alcohol while taking benzodiazepines because the combination could cause breathing to become too slow. Patients should seek medical attention for very rare effects like allergic reactions, worsening mood, seizures or extreme drowsiness.

When taken regularly, benzodiazepines can cause physical and psychological dependence and withdrawl. The withdrawl syndrome can cause changes to sleep and mood, upset stomach, pain and changes in perception and memory. Rarely seizures can occur during withdrawl. The effects of withdrawl can be minimized by tapering off of the medication slowly. One strategy is reducing the dose by half each week, but your doctor can provide individualized tapering instructions. Withdrawl can begin within a few days of last dose or sooner in patients taking higher or more frequent dosing. Withdrawl usually peaks around 2 weeks.

The pain from burning mouth syndrome can interfere with sleep, which can interfere with mood and functioning. Clonazepam used in Burning Mouth Syndrome is typically sucked and held in the mouth for 3 minutes and then spit out up to three times a day. Because the drug is still absorbed by the body from sucking the tablet, doses could potentially lead to dependence and other adverse effects even though the remainder of the tablet is spit out. Doses used in burning mouth syndrome are typically very low, however burning mouth syndrome can last for months to years. Tapering may be appropriate, as continued use over this period could contribute to dependence and withdrawl. Other drugs can be utilized to relieve pain in burning mouth syndrome including tricyclic antidepressants like amitriptyline, alpha lipoic acid, anticonvulsants like gabapentin, anesthetics like lidocaine or hot pepper, and water oral rinses. Treatments for dry mouth or candida infection, if appropriate, are used as well.”

Causes of Burning Mouth Syndrome can be found by following this link. http://mayocl.in/2ebUG8h

For those using clonazepam in burning mouth syndrome: Do you use clonazepam when pain peaks later in the day, or are you using it throughout the day?

Liked by lauren123

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