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.
He agreed but did not want me to immediately discontinue the medicine, since some people have negative effects from that. Instead, he will decrease my dosage by half again (down to the very lowest dose available) for two weeks and then discontinue. This is why you need a knowledgeable medical professional to watch your back, right?
So, how am I feeling about this?
Truthfully, a little depressed. Something that really seemed to tame the dragon a bit is now going to be in my rearview mirror along with so many other medicines. Bummer.
This is the Burning Mouth Journey.
It is a path of experimentation, discovery, and often disappointment but I cling to the fact that Clonazepam ODT does work and does help me cope with this pain. That is a blessing and I continue to be thankful for it.
I am sorry to share this news with you, but the side effects are not the same for everyone and I hope this medicine can help someone out there.
Good luck on your journey.
A Burning Journey 
Kali, thank you for your frequent updates, they are so helpful. I’ve been on the lowest dose of Effexor XR for several months most for the antidepressant benefits. There’s been no relief from BMS from this med. However, I’ve been experiencing painful muscle spasms which might be from Effexor. I’ve been wanting to change to a different antidepressant because my sex drive is nil on Effexor and damn, life’s too short to also have that pleasure taken away. By any chance do you recommend another antidepressant that doesn’t kill my libido? AGAIN, you are a godsend, Kali.
With great appreciation for you blog,
Joli
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Joli,
I am glad to be of help! The lowest dose of Effexor XR had no benefit to me either, and if you are getting muscle spasms at that dose, it is definitely worth a conversation with your provider. I wish I knew of an anti-depressant that didn’t squash the sex drive! Another conversation with your doctor?? I have resorted to some other aids that help me get past that lack of libido and we can talk about that privately if you like. You are right, life is too short and our relationships are too precious to lose to this awful disease.
Kalí
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Hi Kali, I’m sorry to hear that about Effexor. I shared your journey with my Primary. She was willing to switch from Zoloft to Effexor. During the last few months I’m going through another work up for another rare disease. I decided to wait to try Effexor with all the new testing and more waiting for results. I feel discourage that I may never find an answer.
I so appreciate your journey. Keeping in touch really helps and my online support group. I’m hoping to figure out this other issue, I don’t think it will change the burning. On a positive note, suffering from BMS and my dental issue I can’t take medication for my osteoporosis. My bones are suffering but the medications would cause more harm.
Another summer has flown by for me. I’m thankful for short visits with friends and family. In two weeks I’ll have my final oral surgery to uncover the implants. I pray they took and I can finally say goodbye to these denture. I don’t expect it will cure my burning. I’m hoping one less thing in my mouth will help by not focusing on how big it is.
Enjoy your time with family and the end of summer. I’m glad you figured out the cause of the tics we’re related to Effexor. I do agree with you, we’re all different. Some meds work and some don’t. Stay hopeful!
Hugs
Jan
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Jan,
I am so sorry you are dealing with all of that! What is the rare disease that they suspect?
While you can’t take meds for your osteoporosis, consider adding weight bearing exercise to your schedule including actually lifting weights! It is amazing the difference they can make for women. Over 2 years I added 3.7% increase in the bone mineral density of my lumbar spine. Check with your doctor, but you might enjoy lifting free weights! Praying for success and surcease of pain with your oral surgery. Stay in touch and let us know how it goes!
Hugs to you,
Kalí
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When I went to Mayo Clinic in 2022, I was told my labs all normal but tested positive for Candida. I’ve struggled most of my life with dental issues despite my good dental hygiene. I would have cleanings twice a year and still ended up with root canals that eventually failed. My dentist thought maybe related to reflux. During Covid I suffered through a terrible abscess three root canals. I started thinking about dental implants. Long story short I may suffer from Hypophosphatasia. I remembered the labs Mayo Clinic ran and my B6 toxic high. Their lab suggested further testing to R/O HPP. I waited six months and asked them to repeat it and they agreed and they said it was normal. I have many symptoms of it but what happened is my ALP levels have been low since 2005. Looking back they were flagged but was always told, WNL. My new PC ran it again and low ALP and this time elvated B6. Last month I went back to Mayo and saw a wonderful endocrinologist. He doesn’t know what to think either. I see Genetics at the end of September. Time will tell but I need treatment for severe osteoporosis. I took Prolia for a year but not safe if I’m doing dental work. He recommended a daily injection called Tymlos. Another nightmare dealing with insurance.
It’s the waiting game that’s hard and I’m getting older. Seems like we all are post menopausal. If I was 50 I would look at it differently but at 67 I can see time flying by.
So glad we’re connected, but sad it’s due to BMS
❤️
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Wow, Jan!
I had never heard of Hypophosphatasia. Genetics based maladies seem to be some of the most elusive and frustrating medical puzzles. (My 2 year old grandson has Cystic Fibrosis and CF Liver Disease) It sounds like your labs are giving inconsistent clues, as well. I am so sorry and I hope that a Geneticist can help you. Much progress has been made, but there is still so far to go.
I am keeping you in prayer.
Kalí
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