Tag Archives: Coping Strategies

Continuing Effexor XR for Burning Mouth Pain

Posted on by
7
Burning Mouth Cloud

My last post let you know that my Neurologist had prescribed Effexor XR to help with my burning neuralgia.

At 37.5 mg, per day there was no discernible effect. We went up to 75 mg.

After a while at this level, I noticed that the burning had become more of an intense tingling for part of the day. I reported this to my Neurologist and he suggested we double the dosage.

At 150 mg I began to notice that even the tingling was lessening for most of the day. Some days it was hardly discernible until late afternoon when it would sometimes get too intense and I would need one dose of Clonazepam ODT .5 mg to control it. (I am approved for up to 2 mg of Clonazepam a day, so this is a small dose.)

I reported these changes as I approached a month of the 150 mg dose, and asked what he would recommend. He responded that we should give this dose another month and see if accumulated time makes any additional difference. I agreed, and so this is what we are doing!

After over fourteen years of Burning Mouth pain, tingling is a blessing. Is the pain all gone?

Continue reading →

Effexor XR and Burning Mouth – An Update

Posted on by
2

I reported in a previous post that my Neurologist had suggested that I try Effexor XR (Venlafaxine) in addition to my daily dose of Clonazepam/Klonipin ODT.

He started me with the lowest dose, and it didn’t seem to do anything so as we had agreed, he doubled the dose and I started taking it once a day.

I immediately came down with a head cold that turned into bronchitis and set everything on hold for a while. Now I have had a clear month at the higher dose and I have noticed something interesting. My daily dose of Clonazepam ODT has always been subject to some fluctuations due to flares in pain after dental work, abnormally dry air, or those elusive good days when the pain level isn’t too high, so it took about a week to notice the pattern.

I was not burning so much as tingling at the beginning of my pain cycle. I had been able to get by with one dose of Clonazepam ODT a day for a week.

Continue reading →

The Current Covid Variant and Burning Mouth

Posted on by
1
Stuff That Works – Burning Mouth – Read about it below!

If you have been following the news, you know that most current cases of Covid, including reinfections, are the Omicron BA-5 variant, which has two faces for us. The good face is that it is not as virulent and fatal for most people. Note I do not say all. The bad face is that it is even more infectious than measles and doctors note correlations between accumulated injury to the body and long Covid symptoms with reinfections. For those of us with the chronic pain of Burning Mouth, the prospect of adding another layer of symptoms or exacerbating the ones we have with hacking coughs and congestion is daunting.

Interested in learning more? NPR explains it here very well.

Our immediate family has remained relatively unscathed from Covid. Our younger daughter and her husband who live in another state got it, but our daughter is a front-line healthcare professional and they are both somewhat frequent travelers, so that was probably unavoidable. They are young, healthy, and did okay since they were fully vaccinated and boosted, but it wasn’t a pleasant experience.

Continue reading →

15th Year Begins – Burning Mouth Syndrome

Posted on by
18
Photo by Alexander Schimmeck on Unsplash

Yes, Mother’s Day is this weekend and each successive holiday is a combo pack for me.

On one side, there is the great joy we take in our wonderful daughters and the special families they are both creating. Feeling appreciated for the love, time, energy, and creativity I invest in them, and an added bonus this year of a precious grandson who is still trying to pronounce “Gigi” and who gives me gorgeous, gap-toothed smiles and amazingly strong hugs.

On the other side, there is the 14th anniversary of this go-around with Burning Mouth Syndrome. The 15th year begins the day after Mother’s Day with no end in sight.

There is nothing else like this in my life and it has had effects that I am probably not even aware of yet. Experts say that the body remembers trauma, whether mental or physical, and it may be surprising to see what outcomes await those of us who deal with chronic pain for years or even decades.

So, what did I learn this last year?

Continue reading →

Burning Mouth Syndrome and Me

Posted on by
7
Photo by Pixabay on Pexels.com

Strange title for a post on a blog that has “One Woman’s Experience with Burning Mouth Syndrome” in its title, right?

But it seems to be necessary at this time of divisiveness and stress to reiterate that this is my experience. Yes, I do reference what little research has been done on this burning neuralgia, and will continue to send people to the BMS Support Website where they can read it themselves.

The truth is that NO ONE KNOWS what causes Burning Mouth. You can suspect dental work (I do personally!), or stress, or vaccines of any kind, or whatever you want to, but again I stress that NO ONE KNOWS.

When I decided to start this blog, it was for two reasons. One was to give me an outlet to say how it was feeling to me and what it was doing to me. Expressing yourself can give some relief. The second was to share what I learned about it, all the things I tried, how I got my diagnosis, and what coping strategies helped me and might help others.

Continue reading →

Remission? Not So Much-Burning Mouth Syndrome

Posted on by
4

My pain had been decreasing, and the distraction of helping others (always a good coping strategy) seemed to be making things even better. I took less medicine and reached for the cold water less frequently as I quenched thirst, not pain.

Then I had my yearly dental checkup and teeth cleaning this week, and although my hygienist was so careful and gentle, the burning is back. As I sit typing this, mid-morning, my tongue feels as painful as ever and my cold drink is by my side as much as possible.

I probably should have known better since I experienced remission once long ago, and it was not a gradual thing at all. I simply woke one morning in London with no pain. I thought the antibiotic I started before leaving on the vacation had worked, and celebrated that it was “over,” but I didn’t really have a clue that I was in remission at the time. I thought I was cured!

So, my Burning Mouth Syndrome friends, the journey continues. I will increase my dose of Clonazepam/Klonopin ODT slightly until this flare subsides, but will go back to the lowest dose as soon as it is possible.

I plan to keep searching and talking with you. I will stay informed by the Burning Mouth Support website as possible research and studies may lead to treatments or cures over time.

Stay tuned, and hold on to hope.

Am I Getting Better? – Burning Mouth Syndrome

Posted on by
2

In May, I began a “job” again for the first time in about thirty years. I have been working as a volunteer all this time, but it was at my convenience and although there were busy times, it was not a constant or consistent routine.

Now I care for my five-month-old grandson who was diagnosed with Cystic Fibrosis at three weeks old. I drive to my daughter’s home by 7 AM each weekday morning and leave at 3:30 PM to beat the traffic home. (She and her husband work full time, right now at home but increasingly in their offices.) I feed him, change him, bathe him, play with him, and interact except when he naps. While he naps I help around the house with laundry, dishes, and preparing bottles. Now we are beginning solid food and that will be another adventure!

What does this have to do with my Burning Mouth Syndrome pain?

Continue reading →

Stress and Burning Mouth Syndrome

Posted on by
4

Stress. We know it makes our chronic neuropathic pain worse. Our pain increases as stress rises, which increases pain, which increases stress…and well, you know the rest.

It’s an automated answering system from Hell, with no readily visible pound sign to hit to get a live person on the line. Or is it?

Stress is coming at us from all sides now, from the worries and complications of the pandemic to the feelings and actions we are experiencing about racial equality and equity. We are not alone in our stress by any means, but chronic pain sufferers can be triggered in more than one way by it.

I admit that I resisted counseling at the beginning of my Burning Mouth Syndrome journey. I had an instinctively negative reaction to the assumption that this pain was “all in my head,” or that therapy could or would help. It also felt suspiciously like I was getting shuffled off into the “menopausal female” box where any aches or pains or issues were part of the incredibly mysterious malady that seemed to be menopause. As a strong and independent female, I rejected this categorization and marginalization and started fighting back.

How? Continue reading →

Traveling With Burning Mouth Syndrome

Posted on by
4

My husband and I like to travel, and we have always dreamed of going to New Zealand. The timing is right (We have the resources but aren’t too old or infirm to enjoy the activities!) and so we have planned an adventure-filled excursion. We will deal with a 15-hour flight there and back, crossing the International Dateline, and a time zone change beyond what I have ever experienced.

The question arises…How do you stay on top of Burning Mouth Syndrome under these circumstances? 

Plan, my friends, and plan well. Continue reading →