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!
Your doctor sounds absolutely wonderful. Wishing you freedom from this malady! Thank you so much for continuing to share your journey.
Thank you! He is a treasure and my fourth Neurologist along this journey, so it took a while to find him. Keep asking questions and checking leads if you are looking for a medical ally. Hoping you are doing well.
Kali, seeing your blog this morning is like receiving an unexpected gift. You offer me hope and companionship in our search for relief. I just had an appointment with my PCP who gave me a prescription for hormone replacement after I filled her in on Dr. Sklar’s treatment for BMS. The cost for 3 months is over $500 which made it not something I can afford. However, I also have a script waiting for me to pickup for 1mg of clonazepam tablets. Reading that that med gives you relief is so heartening for me with hope that I might possibly get some respite from this never ending condition. Thank you, thank you for that. You are in many ways someone who has provided me not just hope but friendship. I am so grateful to what you are doing…..Joli
PS: I am waiting to get my medical marijuana card here in Maryland which is not a speedy process. I will definitely share what results I get from trying some CBD/THC treatment.
I am so glad you are trying some different things and I pray that one or more of them give you relief with few side effects. With no definable cause or cure in sight, it is the best we can hope for right now. The clonazepam helps many people with BMS, but there is no denying that it can be habit forming and it will cause drowsiness so use it with care and keep your line of communication open with your doctor. It sounds like she is on your side and and for chronic pain sufferers in general, that is priceless. Good luck with the medical marijuana and I will look forward to hearing about your experience! Thank you for your kind words, and stay in touch!