Tag Archives: Chronic Pain

November 11 – Traveling With Burning Mouth Syndrome

By Kalí Rourke

I have written posts about Burning Mouth Syndrome for this blog in the past, and if you do not suffer from it or other chronic pain, this may be of no interest to you. But if you do, or if you know or love someone who does, take a minute and join me in my Burning Journey.

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 or other chronic pain under these circumstances? 

Plan, my friends, and plan well.

Make sure you have enough of whatever medicine works for you and keep it on your person. If there is lost or delayed luggage, you don’t want it to have your meds in it. Plan your coping strategies and then be sure you are keeping those with you as well. In my case, I will have a large bottle of water to sip on and xylitol gum to chew sparingly as needed. Stay hydrated. Avoid alcohol and keep your coffee and tea intake at your normal level since it can be dehydrating if you have too much. You know what your triggers are, so avoid them and care for yourself like any person with a chronic illness should.

Think about the time differences and be sure to stay on your medication schedule so you don’t unintentionally under or overdose yourself.

Stress, lack of sleep, lack of control over your diet and other factors may cause a flare of your burning or other pain. Sometimes this is inevitable and you just have to get through the flare to the other side, so mentally prepare for that and nap when you can. Stretching and deep breathing are also great ways to relieve the physical stress of travel so I will be doing that as much as I can!

Relax as much as you can and allow as much distraction and fun as you are able. 

That’s my plan!

Do you have some other travel tips for BMS or other chronic pain sufferers? Share them in the comments! You never know when something you think is basic information is very helpful to someone else.

Kali RourkeKalí Rourke is a wife, mother, writer, singer, and active volunteer. She is a Seedling Mentor and serves as a Mentor for the Young Women’s Alliance. Kalí is a philanthropist with Impact Austin,  Austin Community Foundation Women’s Fund and serves as a Social Venture Partner with Mission Capital.

She blogs at Kalí’s Musings and at A Burning Journey – One Woman’s Experience with Burning Mouth Syndrome where a version of this post also appears.

November 9 – A Pattern of Pain

by Kali’ Rourke

selective focus photography of zebra

Photo by Magda Ehlers on Pexels.com

I have begun my 8th year of chronic pain with Burning Mouth Syndrome (BMS) and finally, something is working.

I have Primary BMS. If you have no underlying conditions and things look normal, despite oral burning every day that worsens as the day progresses, but ceases while sleeping, eating or drinking…welcome to our club and our pattern of pain.

If you have the same symptoms, but you also have an underlying disorder, then you may get a Secondary BMS diagnosis. Treatment of your illness may also relieve the BMS.

When you first start burning, you will try anything. I did.

Capsaicin rinses, aloe vera juice, vitamin supplements, etc. with no relief. Compounded estrogen spray in the belief it was hormonal, Lidocaine gel, which tasted foul and merely numbed everything…None of these helped me; not even a little.

Next stop, Specialists; each with their own perspective. They can cloud the issue if you aren’t careful. See your Dentist, Family Doctor, and an ENT to start. They can often diagnose and treat the “horses” of this diffuse neuralgia. Some horses are an incorrect bite, dry mouth, allergies, hormonal imbalance, geographic tongue, and even acid reflux, so see a Gastroenterologist if GERD is suspected.

Often, we end up working with a Neurologist who will rule out the horses of tumors and nerve impingement, and when everything comes back normal, he will begin to look for “zebras.” Zebras are rarer maladies and often syndromes of exclusion. In other words, everything looks fine but you are still in pain, so it must be a Zebra.

What do we do with our Zebra?

In primary BMS, there is no cure and we can only guess at a cause. Hormonal changes, dental procedures, stress and more are suspected, but no one knows for certain.

For those of us who are generally healthy except for this chronic pain, there are few medications that have been shown to be effective.

I tried Neurontin and Klonopin on my neurologist’s orders. Neurontin had too many side effects, and nothing changed when I went off it. It was not helping me.

Klonopin was different. I dissolved the hard tablets in my mouth, swallowing the medicine, and although it had the side effect of drowsiness, it took the edge off my burning and helped me cope.

This summer, my latest Neurologist switched me to Klonopin ODT dissolving wafers and they have been MUCH more effective for me. I put one on my tongue and let it dissolve, holding the liquid in my mouth for at least a minute and swish before swallowing.

I am now out of pain. I still get tingling at times, but about 98% of my day is mine again. My pattern of pain is broken.

If you suffer from BMS, consider discussing this treatment with your Neurologist or Doctor.

For the first time in over 7 years, BMS is not the first thing on my mind every morning. This may be temporary or perhaps it will last, but it is a joy not to burn and I will revel in it for as long as I can.

krourke-web

Kali’ Rourke is a wife, mother, writer, singer/songwriter, avid volunteer, philanthropist, and a proud Seedling Mentor. She blogs at Kalí’s Musings and at A Burning Journey – One Woman’s Experience with Burning Mouth Syndrome. A longer version of this post can be found at A Burning Journey.

 

 

 

 

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