As promised, here is an update on my Burning Mouth Journey and the latest thing I am trying.
You may remember my experience with Effexor XR/Venlafaxine and the muscular tic side effects that forced me to abandon it even though it had been very effective at reducing my burn to a tingle.
My primary Doctor suggested that I talk with my Neurologist about compounds similar to Effexor XR but that may have fewer side effects. My Neurologist listened, did some research, and we decided to try Cymbalta/Duloxetine at a very low dose and see if it made a difference. This was in addition to the Klonopin/Clonazepam ODT at .50 to 1 mg daily that I take to control the burning escalation.
I must admit that at 20 mg per day of Cymbalta/Duloxetine, I noticed no change at all. I passed this information back to my Neurologist and he prescribed 30 mg per day.
I stayed on the 30 mg per day for a couple of weeks, and although I could detect a little ease in burning, it was not enough to make me want to continue. I passed this information back to my Neurologist and he suggested that we try 40 mg per day and see if I got relief with no discernible side effects.
It took about a week to tell the difference, but right now my tongue is tingling mildly, which is the ONLY thing going on. There are no side effects for me other than a slight drowsiness mid-afternoon. I will take it!
Is the BMS completely controlled?
No. But it is so much more tolerable, and that is a miracle in itself.
If you have not tried this family of medicines, you are welcome to ask your Doctor about Cymbalta to see if it is appropriate for you. Like many other meds of this type, you should never simply stop and instead should ramp your dosage down gradually with your doctor’s guidance.
Year 17 is starting out for me with some hope on the horizon!
A Burning Journey 
Hooray for light at the end of the tunnel! Here’s hoping it leads you towards medical solutions that help. (I’m on a different treadmill (for migraine) and it IS exhausting). Take care, Linda xx
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Thank you, Linda! It has been a long road, for sure! I assume you have tried Aimovig for your migraines? I suffered with them for so long (up to 18 per month) and since making Aimovig part of my monthly maintenance, I have not had a single migraine in years. My best friend who suffered more and for longer had the same experience although her dose is double what I take. Best wishes for your situation and I hope things improve for you! Kalí
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Aimovig is not big in Australia, but I am doing the 3 monthly Botox injections which has made big improvements for me. It’s such a mean disease, but I’m thrilled that so many people are finding relief from it as the medications keep improving. xx
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Hi Kali,
As always, thanks for your personal information. In addition to Clonazepam (same dosage as you) I use 30 mg. of Duloxetine as well 600 mg. of Gabapentin. All three have kept my pain level quite low.
Thank goodness for these medications. I am grateful that they are available and recommended by several doctors.
Barbara Z.
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Barbara,
So nice to hear from you! I am so glad you found a combination that is helping you. I hear from people around the world who are dealing with burning mouth pain and the availability of these meds and the willingness of their doctors to prescribe varies greatly. I feel lucky to have access, an excellent neurologist, and the resources to take advantage of these things.
Thinking of you, and I hope your low levels of pain continue and ultimately completely cease.
Kali
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