Author Archives: kalipr

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…

Summer Heat and Your Burning Mouth

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© Can Stock Photo Inc. / AntonPrado

Summer has begun in Central Texas. Yay?

We are getting excessive heat warnings from the Weather Advisory and anticipating high temps ranging from 103 to 108 degrees or more over the next week. Oh yeah, and with high humidity to intensify it!

Does anyone out there struggle with the pain of Burning Mouth Syndrome when it is hot?

I do, and the only things that help me are the following:

  1. Getting plenty of sleep.
  2. Getting plenty of hydration. As they say down here in Texas, “If the number of times you have to go to the bathroom doesn’t annoy you, you aren’t drinking enough!”
  3. Being prepared to add a little to my meds if they are flexible. I find a .25 mg dose of Clonazepam ODT, dissolved and swished around on my tongue, will back off the intensity until it is time to take my regular .50 mg dose around dinner time.
  4. Avoiding overheating in general. Some of our medicines can make us more susceptible to heat and may even cause us to suffer heatstroke if we aren’t aware of it. Check your medicines and see if there are any warnings.

That’s all I’ve got! Do you have any strategies you use and would like to share?

Let us know here in the comments and stay cool out there!

Why You Should Do Yearly Checkups – Burning Mouth

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Photo by CanstockPhoto-Ankabala

Yesterday, I spent some quality time with my Neurologist at my yearly checkup. We discussed my medicines (Effexor XR and Clonazepam ODT) and discussed how the mix had changed and whether I should continue on them now that I have begun my sixteenth year with this disorder.

Our consensus together was yes. Effexor XR has lessened my need for the Clonazepam ODT with minimal side effects at the dose I am taking. I start tingling within an hour after breakfast and that sensation increases in the normal cycle of primary BMS until late afternoon/evening when I take one low dose of Clonazepam ODT.

This serves two purposes. It interrupts the cycle of intense tingling so I get through my evening when it would usually be the worst, and it allows me to fall asleep easily and quickly. Sleep is painless for primary BMS sufferers and my body gets the rest it needs. The more rested and hydrated I am, the less pain and tingle I experience.

All of this routine can be completely upended during a flare (You folks with BMS know what I am talking about!), and I have the go-ahead from my Neurologist to increase my Clonazepam ODT dosage up to 2 milligrams if necessary. Even my worst flares have not required that much Clonazepam, but it is nice to know it would be okay if it did.

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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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Effexor XR is a Qualified Success

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I have written before about Effexor XR/Venlafaxine HCI, a medicine my Neurologist recommended since it is one of the few meds out there that I haven’t tried!

Up to now, the only thing that truly lessened my escalating burning neuralgia was Clonazepam ODT, and the side effect of that, as those of you who have tried it know well, is drowsiness.

I found over time that I could control the timing of my doses and coordinate caffeinated drinks (coffee in the morning, iced green tea until noon) to ward off daytime drowsiness. It was working okay and I was able to function. When flares arose (mostly after dental work of any kind) I could increase the dosage and the caffeine. Life was continuing to be workable.

Effexor XR/Venlafaxine HCI is an antidepressant, and my neurologist started me out with a minimal dose of 37.5 mg once a day. I had no discernible relief from it at that level, so we doubled the dosage to 75 mg once a day. At that level, I was experiencing some relief (The burning became more of a tingle that would intensify through the day until I took the minimum dose of Clonazepam ODT around dinner time.) but it wasn’t knocking the BMS out.

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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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