Tag Archives: Burning Mouth Support Website

Could Your Blood Pressure Med Affect Your Burning Mouth Pain?

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© Can Stock Photo / sCukrov

As you may know from reading some of my previous posts, I have been contributing to and following the Burning Mouth Support website for years.

I have learned much from it, and have helped to make it a resource for anyone suffering or caring for a sufferer of this disorder. There isn’t a lot of research out there, but what there is will show up on the Research & Studies page of the site for your use and to help you to educate your caregivers and medical professionals.

One of the latest things we found was a Clinical Case Report (Only 1 person!) on Burning Mouth pain as a side effect of a blood pressure drug called Lisinopril. Many people are on blood pressure medicines and it may be worth asking this question of your doctors.

“Are there any of my medicines that may affect my burning mouth pain?”

Even if it is an additive side effect (i.e. just makes your burning worse but didn’t cause it) you may find some relief by changing to another similar medicine. Some medicines can have dry mouth as a side effect and that if just adding kindling to the fire for those of us with Burning Mouth.

It is worth asking about, and the Burning Mouth Support website is worth checking into. You will find links to Support Groups on Facebook from around the world, Coping Strategies worth trying, and even a guide to the kinds of Specialists that can be helpful to you if you are searching for a diagnosis or help.

It’s a free resource thanks to Dennis Sharpe, and if you get a moment, thank him for his generosity!

Wishing you the best.

Who Can I Ask About Burning Mouth?

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I have been contributing to the BMS Support website for many years now, and I am seeing the beginning of a pattern in the research, studies, and conclusions of the scientific community over time. Does it definitively identify a cause or diagnostic tool for BMS?

No.

What it does do, however, is to suggest that our chronic pain may not be unique in where it originates.

We know there are structural physical changes that are detectable in the taste buds of BMS sufferers. We know that our saliva shows some changes, as well. We know that the hallmark of primary BMS is the lack of lesions, sores, geographic tongue, or any other visible features and that’s where it gets very frustrating. How do we tell our doctors that we are in pain when they see no evidence of it? How do we ask for medicines or treatments that may ease our symptoms? How do we explain to them in their language (medicalese?) that this is not an unknown malady and that no matter how limited, there are researchers out there who are looking at the linkages between unseeable inflammation of nerves and its effects on chronic pain?

It’s tough, but the BMS Support website is there to help you educate your health professionals. Links to the latest studies, abstracts, and reviews are there for them to peruse and we all can learn together.

Take a minute and click around on a site that volunteers have made and paid for to help you. If you know of studies or research that is not listed there (Please check!) just let us know! Dennis Sharpe puts in his own funds and many hours to make this resource for all of us and he can always use your help to find new information to share.

Burning Mouth doesn’t have a foundation to help fund research and no celebrity spokespeople to raise awareness. We have to make our own resources and be of support to each other on this burning journey.

Wishing you luck, and see you down the road…

Year Sixteen Approaches – Burning Mouth

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(c) Can Stock Photo / ragsac

May is Mother’s Day.

May is Cystic Fibrosis Awareness Month

And May will mark my fifteenth anniversary with Burning Mouth Syndrome this time around and the beginning of a sixteenth year.

I will celebrate the first with an ever-expanding family (Two more grandbabies this summer!) and commemorate the second by fundraising and supporting our little CF champion, Miles, but that third one is a bit more problematic.

Meanwhile, the stresses of life go on, as they always do, and as we juggle living in a small apartment while our condo undergoes flood remediation (A sprinkler pipe burst at the top of the tower in July!), two babies coming this summer and wanting to be there for both our new mom and dad and the existing family who is adding a second child, and knowing now that my 83-year-old mom is in her final year of life, stress has gotten to a new level. Care, hospice, and all the complications you can imagine are looming.

It’s a lot, but we will get through everything with as much grace and generosity as we can muster.

I am grateful for Effexor XR and Clonazepam ODT because without them my life would be a bit hellish. Effexor XR is still keeping my pain level to a tingle most of the day, and a small dose of Clonazepam ODT knocks out the pain as it escalates to its peak late in the day and helps me drift off to sleep where I experience no tingle and no pain. It is working for me and I will see my Neurologist next month to discuss any next steps we could or should take.

Is anything new with you guys on the burning mouth front? Let me know, and keep checking the BMS Support website. A dedicated volunteer is paying for that site and I just help him keep it up to date. If it has helped you at all, please let him know you appreciate it!

Best wishes to all of you, and to all of the Mothers, Grandmothers, Mothers-in-Law, and Mothers-in-Love out there, have a wonderful Mother’s Day.

Change, Stress, and Chronic Pain

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We have all read about the linkages between stress and chronic pain of all kinds. Our bodies know when life is getting a bit “extra” and it reacts accordingly.

Many of you may have noticed that when big events or changes in your life and routine happen, your burning mouth pain may flare. If you are wise, you have anticipated this might happen, have your coping strategies at hand, and are up to date on any medication that may be helping you.

What are coping strategies for burning mouth syndrome or disorder?

The Burning Mouth Support website has a whole page devoted to them here.

More information and help that other sufferers have found useful are at Stuff That Works – Burning Mouth Syndrome. Have I found many things they discuss to be useful? Not personally, but if I have learned anything about this mystery disease after nearly fifteen years, it is that it is very individual, and different things work for different people. Sometimes just having people to talk with about it or feeling like you are part of a community can help.

Is there a cure? No.

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Express Yourself! Life with Burning Mouth

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© Can Stock Photo Inc. / Photography33

I have discussed the power of communication before when it comes to managing chronic pain. Realistic representation of your pain levels, educating new specialists about Burning Mouth Syndrome, and even sharing with family and friends about your condition; what helps…and what doesn’t.

We have discussed counseling and therapy and I highly recommend it if you can find and afford it. It will give you a listening ear from a professional who has “no skin in the game.” You cannot overwhelm them with your frustration and pain, or frighten them about your reactions to it. You cannot express any emotions that they have not seen before. They are required to have professional boundaries, and short of your expression of the intent to self-harm or harm others, they will actively listen and then give you some ideas of how to handle these emotions. It’s a gift you give yourself.

But, you say, “I can’t afford that.” Or, “I don’t want to open up to a stranger.”

I hear you.

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Preparing for the Holidays with Burning Mouth

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We have covered a bit of this ground before, and again I urge you to communicate, take the rest (and medicines) you need, and use your coping strategies to get through the stress of the holidays.

© Can Stock Photo Inc. / Nelosa

Stress can be part of the “Holiday Package.“

Things have loosened up and you may be putting family events together, gathering to open gifts, and doing things you haven’t been able to do for a couple of years. It can be hard to get back into the swing of things.

Presents? Oh, don’t get me started! The logistics of getting everything to everyone with the uncertainty as to whether things will get there in time…

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When Contemplating a Flare – Burning Mouth

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Over the last few posts, I have kept you up to date on my new medication, Effexor XR/Venlafaxine HCI.

My Neurologist initially prescribed a very low dose with no effect. We doubled it and saw the burning neuralgia back off into a tingle for most of the day. We doubled it again and got amazing relief that lasted all through the day, keeping the pain to a very tolerable tingle. Then the side effect of muscular tics began and we had to cut that little honeymoon short.

The upshot?

I am back on that medium dose of 75mg per day and I usually have just a light tingle that escalates. Sometimes I can skip that late afternoon dose of Clonazepam ODT, but other days I need it to blunt the tingle that is becoming too strong. I haven’t had a real flare yet with Effexor XR so I am unsure whether that means it is preventing them, or the stars just haven’t aligned yet. I will let you know because the ultimate test looms ahead!

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No Free Lunch with Burning Mouth Syndrome

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Neurologist and Medicines
(c) Can Stock Photo / everythingpossible

I shared the good news with you in one of my last posts that the Effexor XR at 150 mg per day had lessened my burning into a tingle that did escalate through the day but was easily tamed with .50 mg of Clonazepam ODT around dinner time.

I was so happy and just waiting to see if this would hold or if something would change.

As with nearly everything I have tried against this burning neuralgia, something did change.

My husband started noticing a couple of weeks ago that I had begun shaking my head in little “no” movements when I was engrossed in a TV or computer show and it increased as time went on. He mentioned it to me and I truly had no idea I was doing that. It only happened when I was watching TV, whether on the big screen or my computer or reading at night and I felt nothing unusual. He videoed me when I wasn’t paying attention and I agreed, it was a definite involuntary movement.

Weird, right?

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Avoiding The Pain You Can-Burning Mouth

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My posts here are mainly about Burning Mouth Syndrome, (or Disorder if you prefer). Either one fits. I share medications that have worked and not worked for me, strategies to track your pain and see what is having an effect, and coping strategies to help you get through day after day of chronic pain.

Today, I am addressing another kind of pain we can get every time we go for a vaccination. Flu, Covid, Covid Booster, updated Covid Booster, Shingrex, or any other that is recommended…yes, the dreaded arm pain from injections! Some of you find it quite debilitating, some can barely move their arm the next day, and some have varying levels of discomfort depending on what they got this time.

You may decide to get a Covid shot or not, your choice. But darn it, we also lose people every year to flu and it is nearly always preventable in otherwise fairly healthy folks. The flu vaccine has been used for years with few issues, and although there are years when it is more effective than others, it is still worth getting to me. Take a look at the influenza news coming out of Australia and it will give you a preview of what we may be dealing with this winter.

So how do you avoid the arm soreness that can come with vaccinations?

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