I had my yearly sit down with my Neurologist yesterday and after discussing my migraine treatment with Aimovig (100% effective, BTW, but getting very pricey with my husband’s new insurance.), we moved on to Burning Mouth Syndrome.

He asked how my pain was, and I said, “The same as usual. I achieve tolerable levels with 1 mg of Clonazepam/Klonopin ODT spread between two doses, and if I have a flare, I take an extra .50 mg to deal with that and try to get a nap.” He shook his head and said, “I have reviewed your file and you have tried just about everything out there, but there is one that I noted you haven’t tried and I think it might help. It went generic in 2006 so it isn’t outrageously expensive and you can safely try a low dose with your present meds and see if it has a good effect. I would like to get you out of pain if it is at all possible.”

Well, to be frank, this is what you want to hear from your specialist. I said I had some questions about other treatments before I jumped into another drug tryout and he sat back and listened intently.

I outlined some cannabis research I had read about and the treatment protocols that had been recommended for chronic pain (although NOT neuralgic burning specifically) and he agreed that it would be worth trying, but he also agreed that it would be very difficult and illegal in Texas. He is extremely limited by law as to the pain he can prescribe medicinal marijuana for, and burning neuralgia is not one of them. I asked about CBD oil alone and he said it might be worth trying if I went to a knowledgeable pharmacy (quality control is always an issue), but from what I learned about the treatment protocols, CBD without THC does not sound like it would be enough to relieve the pain. I will think about this one if the new drug does not make a difference.

I asked about Virtual Reality which is being used with some success for people with spinal cord issues, lower back pain, and other more concrete sources of pain. Burning neuralgia is again, not specifically addressed in anything I read. He had not heard of it being used for it, and we discussed how costly it was. He thinks that cost will go down and treatment may be expanded over time, but it is new, expensive, and lacks the data that would lead him to recommend it yet.

Neither of these answers surprised me. I was already there based on my reading and so we talked about the medicine he suggested I try. There are no guarantees, and if side effects or lack of impact on my pain was my result, we would simply ramp me off of it and add it to my long list of “tried that; no effect” medicines.

I will begin a low dose of Venlafaxine/Effexor XR for 1-2 months and then we will discuss whether to try a slightly higher dose for another 1-2 months or not. This sounds reasonable to me, and if it gets me out of pain, then it would be well worth the effort.

I will let you all know how it goes.

Is it something you should investigate with your doctor or specialist?

I have no idea, (Not a Doctor!) but if it does work for me, I will let you know and you can decide whether to discuss it. It does have some interactions, so may not be compatible with other medicines you are taking and as you know, I am very conscious of that and always check with a Drug Interaction Checker even if I have discussed it with my doctor. It’s just good due diligence.

Interested in learning more about the Cannabis Protocols and Virtual Reality for Pain? I have attached links to those terms you can read, and keep an eye on the BMS Support website research because when we know, YOU will!