← Return to Burning Mouth Syndrome. I have it very severe.

Discussion
mygrigio (@mygrigio)

Burning Mouth Syndrome. I have it very severe.

Skin Health | Last Active: Aug 31, 2021 | Replies (536)

Comment receiving replies
@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.

Jump to this post


Replies to "I am a 55 year old woman who has had this for 13 years. It is..."

Hi Sheetrock, I also take the dissolving pill as well. However, I take a third dose of .50 about an hour before I go to bed. Along with the Edluar, I am able to sleep. The lack of sleep could really be complicating your condition. Perhaps you should speak to your dr. about it. I hope you keep up with the yoga. I have developed a home practice since I can’t always make it to classes, although I love the support I get from a group atmosphere. I also pull back from activities which is very characteristic of this condition. I do think that ALA helps as well.

Hope to hear back from you soon.

Hi Laure,what is Edular?Maybe i could run it by my Dr. I can relate to pulling back from activities,i also hold back.There are days that i stay in bed.You are right about the lack of sleep,and stress can also heighten my bms..Today was a bad day,woke up with burn,and pain on side of the face and behind my eye.My throat also has been on fire all day as well..I enjoy talking to you..Please stay in touch….

Edluar is similar to Ambien. According to my dr., because it dissolves under the tongue, it does not have to be broken down through the liver. The best part for me is that it is very fast acting, so sleep comes quickly. I tend to be much more active during the day now, since I know that I will sleep at night. Also, my doctor has me on 25 mg. of doxipin which I take right before I take the Edluar.
You might want to look up these drugs on the internet. I’m interested to hear what your doctor says about these drugs.

My doctor is a dentist, an MD and an anesthesiologist. He helped me more than all the others put together. Sadly, he is no longer “my” doctor as he told me just last week that he is closing his practice and will be running a pain clinic for the Dept. of Defense. I know these returning soldiers need his kind of help , but I am now without a pain doctor. I hope that anyone who knows of someone around the Denver area who deals with facial pain issues will respond with some options.

Let’s all keep talking.


Hi Lauren,I’ll be sure to run this by my Dr.It amazes me how the best in Boston,have’nt a clue on how to treat this condition.The neuro,at Tufts wanted me to take 4omeprazoile a day.He was sure it was coming from acid in my stomach.The drugest could not believe how much he wanted me to take..My insurance would’nt pay for 4per day/they said it would kill all the acid,and we are suppose to have some acid.there are over a million people who suffer from this dreadful condition..I’ll keep you posted.Have a good Memorial weekend.

Thanks Sheetrock. Any word from your doctor?

Your rendition about the man in the nursing home goes against your belief that dental work – extractions – caused BMS as he had it before the extractions.

Can you share names of the dentists/location you know specially trained in facial pain? I’ve suffered 24/7 for over a year and no one seems to be able to help me. Thanks for your help. Sorry about your circumstance.

Trigermial neuralgia (SP?)

Hi Karri,

Thanks for your comments. You are the first to respond and your response gave me access to the thread with all the other comments. Really quite discouraging aren’t they

Unfortunately, I don’t have any good recommendations for you. My quest for relief from 24/7 pain which manifests with the burning around the exterior of the mouth, pressure, numbness, tingling and just overall discomfort includes:

Dentists, oral surgeons, biological/holistic dentist, MDs, neurologist, naturopathic doctor, acupuncture. I’ve taken pain meds, antibiotics, prescription dose ibuprofen. The only definitive help has been acupuncture. My acupuncturist told me at the onset that nerve regeneration is very difficult and I needed to be prepared to commit to the long haul: 12-18 months to achieve up to 50% improvement at best. I get treated 2x/week and am in my 11th month. I have had a reducing of the symptoms but probably not more than 20%.

As you know, the pain takes over our lives. I am a very active person but there are days when I can’t get out of bed overcome by weakness and fatigue. It really is lousy.

I hope this might help in some way. My best to you and, again, thanks for reaching out.

Susan

Thanks for taking the time to contact me. Your testimony sounds quite a
bit like my history while searching for some relief. I truly believe that
it has to do with the cranial nerves, but thats just after trying to find
the answer and going from one thing to another..The few things that I have
that helps it, is 1. CLA conjugated linoleic acid ( at walmart) 2. stay
away from ICE CREAM! 3. Chew gum or have something in your mouth that mask
the BMS symptoms. One day they will find the cure, I truly believe that.
I can’t remember exactly what I said (in my post,) but I went to the Mayo
Clinic back in the early 90’s and they thought I was mentally ill and
wanted me to get psychiatric treatment. So I totally felt isolated and
alone, but my husband always believed in me and my doctor that sent me to
Mayo believed.in me also. So don’t give up. Phyllis Marshall

Hi my name is Patty,I am a 20 plus yr.sufferer.I have been to the best hospitals in Boston.I’m so sad for your suffering, believe me,the Dr’s have done everything but nothing works.Medication is the only relief that helps to a point.
I received accunpuncture, three different ones..I went to healing priests,I also had blessed water from Lourdes..
After all these years,Dr’s do not know the cause ,nor do they know how to treat.

I am on so much meds,my days are spent on couch or bed. There are no golden years for.me..
The depression is quite bad.
I currently am on Cymbalta,Clonazepam, and a small dose of Oxycodine.
This condition is debilitating, and having it in the mouth is just brutal.
I pray for all of those who suffer with this horrible condition. .Feel free to respond anytime..
You might want to see an infectious disease Dr.someone was carrying a herpes germ on her tounge for many years.She was treated with Valtrex for a month,and is now pain free..

To all who are associated with Mayo,i can tell you i am a 20 plus yr sufferer of bms,any questions ,please feel free.I have done it all,and took just about everything all of you have taken
I also have trigeminal neuralgia, and receive 25 nerve blocks a month.Mostly in head and neck,and temple area.It does not help my.bms.
I do suffer from depression,.My husbabd and i are retired and married for 47 yrs.although hes understanding,it also has caught up to him.He does get depressed from time to time.
This condition is debilating.
Somedays i just want to end it
But not for my family and grandchildren, and understanding husband,i would have..
I pray for all those who suffer with this horrible condition. .Please feel free to ask ,im a pro when it comes to this condition. .

  Request Appointment