I have written before about Effexor XR/Venlafaxine HCI, a medicine my Neurologist recommended since it is one of the few meds out there that I haven’t tried!
Up to now, the only thing that truly lessened my escalating burning neuralgia was Clonazepam ODT, and the side effect of that, as those of you who have tried it know well, is drowsiness.
I found over time that I could control the timing of my doses and coordinate caffeinated drinks (coffee in the morning, iced green tea until noon) to ward off daytime drowsiness. It was working okay and I was able to function. When flares arose (mostly after dental work of any kind) I could increase the dosage and the caffeine. Life was continuing to be workable.
Effexor XR/Venlafaxine HCI is an antidepressant, and my neurologist started me out with a minimal dose of 37.5 mg once a day. I had no discernible relief from it at that level, so we doubled the dosage to 75 mg once a day. At that level, I was experiencing some relief (The burning became more of a tingle that would intensify through the day until I took the minimum dose of Clonazepam ODT around dinner time.) but it wasn’t knocking the BMS out.
We doubled that dose to 150 mg once a day, and as I indicated in a previous post, although it seemed to be more effective in controlling even the tingle, I began to get a muscular tic which is a documented side effect. I reported it to my neurologist and he immediately lowered my dose back to 75 mg once a day.
It has been more than three months now at 75 mg and I am happy to report that continued use of Effexor XR/Venlafaxine HCI at this level has definitely affected my pain levels. There are days when I don’t need the Clonazepam ODT at all, and days that are worse I have that tool available to me to deal with it.
Is it perfect? Well, of course not! I am still dealing with BMS but experiencing a much lower level of pain while I do it. Would this work for you? No idea!
But it may be something to talk about with your Doctor or Neurologist.
Wishing you luck in your Burning Mouth journey, and let me know if you find something that works for you! Interested in contributing to research on Burning Mouth? Check out Stuff That Works – Burning Mouth and see what other people are doing.
A Burning Journey 
Thank you for sharing
LikeLike
I am so glad to hear that you are continuing to have some measure of relief. Thank you for keep us posted!
LikeLike
Thanks, Susan!
I hope you are doing well.
Kalí
LikeLike
I am so happy to hear that you are doing well with Effexor. After seeing your previous post about it, I asked my Dr. if we could try it. He was enthusiastic to let me try, and I am also happy to report that after 2 1/2 months, I am experiencing a lot of relief at 75mg/day. I also still have tools as a backup when flares hit, but my quality of life has improved dramatically. I was close to quitting my job and was less than the mother and wife I wanted to be. I feel like it has given me part of my life back. I wanted to thank you for sharing your journey; without your story, I may have never known to ask my Dr. Thank you!! Leanne
LikeLike
Leanne,
How exciting! I am so glad you are getting some relief and your response is the very reason I chose to create the blog and support the Burning Mouth Support website. It was difficult for me to accept that there wouldn’t be some constructive thing I could do with this experience, and comments like yours make it so very worthwhile! I hope you continue to get relief, and that remission is in your future soon! Thank you for sharing this with me.
Kalí
LikeLike
Post like yours gives me hope. I’ve taken Effexor years ago for depression and switched to Zoloft. After weaning off Cymbalta I choose to go back on Zoloft. Next month is my appointment with PCP. I would love to share your story. If it works for some, I may benefit from it as well. I’ve stopped all supplements and trying different med. It made me feel discouraged when they failed. I’m tired of being different and it may help with those feelings. Thanks for posting.
LikeLike
Jan,
How long have you been dealing with Burning Mouth? It is easy to get depressed and dispirited when you try so many things and nothing seems to work. You are welcome to share my experience with your PCP. That’s what this blog is all about because when we share our experiences and coping strategies, you never know when you might find what works for you.
Good luck, and let us know how it goes!
Kalí
LikeLike
I’ve suffered for two years. I thought how can something I read on the internet happen to me. The doctors had no clue. The Mayo Clinic figured out Thrush after 8 months. The treatments all failed. I ended up with two rare staph infection from oral Diflucan. I have to accept this to move on. I’m suppose to go to Rutgers in two weeks for their research. I hope I’ll have the energy to go. The fatigue and burning is constant. My appointment is early March with PCP. I think she will be on board with switching me to Effexor. Thank you again and I will keep you updated.
LikeLiked by 1 person
Dear Kali,
I been taking Effexor 37.5mg capsules/day for 4 days now and I’m feeling some sign effects: drowsiness, mild headaches, sometime dizziness and then the worse, constipation. However, aside from those debilitating aspect of this drug my mood is rather upbeat and more positive. And so, I’m willing to hang in there hoping that the good outweighs the bad for at least a month, as long as it improves. So, here are my questions to you before I call my PCP: Is 4 days just an adjustment period for my body to get used to the medication? Did you experience sides effect that eventually went away? I am becoming very aware of trade-offs in life and am wondering if this is one of them. Thank you, Kali for creating this blog, and thank you in advance for your time with answering my questions. Wishing you well, Joli
LikeLike
Joli,
So glad to hear from you! At 37.5 mg of Effexor XR I felt nothing. No side effects and no relief. It was not until my Neurologist doubled that amount that I started feeling relief, and you are right, four days is not a good trial but on the other hand, if you are experiencing side effects at that low dosage and short amount of time, I would talk with my Dr. This may not be the med for you! Let me know how it goes, and for the record, as time went on with the 75 mg dose, I experienced more relief and many days I don’t even need Clonazepam in the afternoon. Wishing you the best!
Kalí
LikeLike
Thank you, Kali for your quick response. I’m still planning on taking the Effexor for the month and hope that the side effect dimmish. I will let you know.
LikeLike
This is a comment to Jan. I participated in the Rutgers study this February and I am going to quote Kali concerning that, “It was difficult for me to accept that there wouldn’t be some constructive thing I could do with this experience…” That quote expresses how I feel about my participation in the Rutgers study with Dr. Cibele Nasri-Heir. Dr. Cibele could not have been more grateful, appreciative and complimentary for my volunteering. She is someone determined to find answers. I know you’ll experience that feeling as well.
Wishing you well and thank you for being apart of the study,
Joli (ritaakemp123)
LikeLike