Another Med Bites the Dust – Burning Mouth Disorder

In recent posts, I have shared with you that Effexor XR has been helping my burning become tingling most of the time. Unfortunately, the dose that was most effective had too many side effects including a very noticeable muscular tic that made it look like I was shaking my head “No.” I had no idea I was even doing that until my husband showed me a video. So weird!

My Neurologist was on top of it, reduced my dosage by half and most of that went away. But not all of it.

Over time, I realized I was having excessive sweating after taking my dose each day, the muscular tic was still there, but with less movement and it became intermittent. I was also starting to develop muscular spasms in my feet, ankles, and quads. Some were quite uncomfortable and there didn’t seem to be any action on my part that brought them on.

At first, I thought it was a shoe issue. Inserts, new shoes, and a couple of different styles of shoes made no difference, and I had to look elsewhere. Effexor XR seemed to be a likely suspect, and I discussed it with my Neurologist. I told him the side effects were outweighing the partial relief I was getting and that I thought it was time to discontinue.

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When Contemplating a Flare – Burning Mouth

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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

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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