Effexor XR and Burning Mouth – An Update

I reported in a previous post that my Neurologist had suggested that I try Effexor XR (Venlafaxine) in addition to my daily dose of Clonazepam/Klonipin ODT.

He started me with the lowest dose, and it didn’t seem to do anything so as we had agreed, he doubled the dose and I started taking it once a day.

I immediately came down with a head cold that turned into bronchitis and set everything on hold for a while. Now I have had a clear month at the higher dose and I have noticed something interesting. My daily dose of Clonazepam ODT has always been subject to some fluctuations due to flares in pain after dental work, abnormally dry air, or those elusive good days when the pain level isn’t too high, so it took about a week to notice the pattern.

I was not burning so much as tingling at the beginning of my pain cycle. I had been able to get by with one dose of Clonazepam ODT a day for a week.

Continue reading

Cannabis, Virtual Reality, and Another Option – Burning Mouth Syndrome

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.

Continue reading

Breaking In a New Doctor – Burning Mouth Syndrome Challenges

Photo by Shopify Partners from Burst

You can find yourself with a new doctor for a variety of reasons. New insurance, moving to a new town, a referral to a pain specialist or Neurologist…these are just a few. In all of these cases, you will need to bring your new doctor up to speed about a chronic neuropathic pain syndrome they may never have heard about.

A Neurologist or pain specialist may have dealt with BMS before and if you have a choice in the matter, try to find one who has. Their experiences may be to your benefit.

However, many of us are caught in that somewhat awkward position of educating our medical professional and it can be daunting if you aren’t prepared. Continue reading

Chasing the Clues – Burning Mouth Syndrome

I have gradually synced my neurologist appointments with my eleven anniversaries of BMS membership.

Each Mother’s Day ticks off another year with Burning Mouth Syndrome and I once again experience the joy of celebrating those lovely young women who are my daughters with the sadness that comes with another year of no cure in sight.

I saw my neurologist this week, and there was really nothing new to try so I will continue with my Klonopin/Clonazepam ODT and will keep dealing with the drowsiness side effect it brings.

But no pity party for me this year. Instead, I am focusing on the pain in my life that has been relieved successfully (Migraines practically cured by Aimovig), and some recent studies that indicate that a few researchers around the world are looking at our mysterious syndrome and finding some clues. The Burning Mouth Syndrome Support website just posted a link to a recent article from Scientific Reports titled “Proteomic profiling of whole-saliva reveals a correlation between Burning Mouth Syndrome and the neurotrophin signaling pathway.”

That’s a mouthful, isn’t it? You can read the entire report, along with many other articles, study reports, and abstracts at BMS-Research.

The scientific report article is dense, full of med-talk, science-talk, and many other things that sail over the heads of non-professionals but here is the main idea. Guy Krief, Yaron Haviv, Omer Deutsch, Naama Keshet, Galit Almoznino, Batia Zacks, Aaron Palmon, & Doron J.Aframian wanted to do profiling and bioinformatic analyses of whole-saliva (WS) from BMS patients compared to WS from healthy individuals. Continue reading

A Little Progress…But Not With BMS

Migraine Headache PainIn a recent post, I talked about my upcoming visit with my neurologist.  You can read that post at Burning Mouth & Neurologists.

The meeting went fine, and as I expected, there was nothing new for Burning Mouth Syndrome. He refilled my prescription for Klonopin ODT and I will continue my present therapy, which has helped better than anything else I have tried.

I mentioned in that post that I was going to ask about the migraines that I have been having at a rate of 8-17 per month for about sixteen years. He told me that the Botox therapy has improved, and offered to check into insurance pre-approval for that procedure, but also said there was something new that I could consider. Continue reading

Burning Mouth & Neurologists

Doctor Appointment for Burning Mouth SyndromeIt’s just about time for my yearly check-up with my Neurologist. I refer to him as #3, since that is how many I have gone through in over 8 years of dealing with Burning Mouth Syndrome (BMS).

Yes, you read me correctly…I am now at yearly check-ups. Continue reading