Tag Archives: Burning Mouth Syndrome

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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When Contemplating a Flare – Burning Mouth

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Photo by cottonbro studio on Pexels.com

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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