May is Mother’s Day.
May is Cystic Fibrosis Awareness Month
And May will mark my fifteenth anniversary with Burning Mouth Syndrome this time around and the beginning of a sixteenth year.
I will celebrate the first with an ever-expanding family (Two more grandbabies this summer!) and commemorate the second by fundraising and supporting our little CF champion, Miles, but that third one is a bit more problematic.
Meanwhile, the stresses of life go on, as they always do, and as we juggle living in a small apartment while our condo undergoes flood remediation (A sprinkler pipe burst at the top of the tower in July!), two babies coming this summer and wanting to be there for both our new mom and dad and the existing family who is adding a second child, and knowing now that my 83-year-old mom is in her final year of life, stress has gotten to a new level. Care, hospice, and all the complications you can imagine are looming.
It’s a lot, but we will get through everything with as much grace and generosity as we can muster.
I am grateful for Effexor XR and Clonazepam ODT because without them my life would be a bit hellish. Effexor XR is still keeping my pain level to a tingle most of the day, and a small dose of Clonazepam ODT knocks out the pain as it escalates to its peak late in the day and helps me drift off to sleep where I experience no tingle and no pain. It is working for me and I will see my Neurologist next month to discuss any next steps we could or should take.
Is anything new with you guys on the burning mouth front? Let me know, and keep checking the BMS Support website. A dedicated volunteer is paying for that site and I just help him keep it up to date. If it has helped you at all, please let him know you appreciate it!
Best wishes to all of you, and to all of the Mothers, Grandmothers, Mothers-in-Law, and Mothers-in-Love out there, have a wonderful Mother’s Day.
A Burning Journey 
Kali, thank you for the Mother’s Day greetings, and your insightfulness with dealing with our BMS. I am taking Effexor 37.5mg/day and am interested in a dosage of clonazepam since it helps you. What dosage do you take and does it help with sleeping? You’re a great help to me and I always look forward to your posts. Now who should I thank for StuffThatWorks blog?
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Joli,
You are very welcome! The Clonazepam ODT (orally dissolving tablets) I take is .50mg in the late afternoon/early evening when my pain or tingling reaches its highest point. It backs that sensation off and makes it easy for me to get to sleep. I would love not to take it any longer, but it is the only thing that addresses the high point of pain and also makes flares more bearable. I have no idea who to thank for Stuff That Works since it is crowdsourced! Let me know how things go with you, and if Clonazepam helps you.
Kalí
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Thank you for your updates and website. It helps to know I’m not alone. I also take. Clonazepam but took myself off of the other antidepressants and medications. Maybe I’ll lol into Effexor. I’m concerned about medications though because I have a MTHFR gene mutation. I have read in Facebook groups that this mutation could be a cause for BMS (interesting that this gene mutation can affect how B vitamins are metabolized). I also seem to have symptoms of histamine intolerance and again, have read this MTHFR mutation could be th cause of that as well.
Have you heard of prolotherapy for cervical instability (which could cause BMS)? I’ve just consulted with a Naturopath Doctor and we’re going to give it a try. I’ll keep you posted.
I’ve also purchased an iTera Wand (terahertz, scalar frequency technology) and have been using that consistently. My hope is that it will bring my body into balance and therefore stop the BMS. There are some good studies around terahertz and scalar treatment for pain and much more. I’ve decided to sell them if you’d like to take a look at information, I’ve put together some information here
https://bit.ly/iTeraCarePrifeTammra
This is the company website
https://www.prifeintl.com/
Another very useful website https://thztherapy.kartra.com/page/uzA257?mibextid=Zxz2cZ
Thanks again for continuing to share your information.
Smiles, Tammra
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Tammra,
Interesting about the MTHFR mutation. Many years ago, we suspected that might be my problem and the doctor put me on a supplement for it, but when I was tested it turned out I did not have two copies and so that was not my issue. I will be interested to see if you have any benefit from the prolotherapy or naturopathic treatment in general. Keep us informed! In regard to Effexor XR, I have found that it reduces my need for the Clonazepam and just helps keep the pain to a tingle most of the day. Let us know if you try it and what your experience is!
Kalí
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Kali, the struggles of living so hard and my life was your life ten years ago. I can’t imagine living with BMS and so much going on in my life. We lost both set of parents and our first grandchild diagnosed with two rare syndrome. We were blessed and continue to be for her community she lives in. She’s so well known and despite her struggles she will start a special needs program at a wonderful university. She will experience it all even dorm life but close enough to home. Her mom, my daughter suffered a grand mal seizure a few months ago so I’ve traveled so much. I wish I was normal and could enjoy food. I wish I could say I’ve made time to see my doctor to try switching from Zoloft to Effexor XL. My follow up next month and it’s the number one question I will address. I feel like I’m ready to jump back on the merry go round and at least give a new medication a shot. I will undergo dental implants in top in the next month as long as bone graphs and sinus lifts worked. It’s not going to help BMS, but I will feel more comfortable without this ill fitted denture. I will keep you posted when I switch and get the right dose for me. Stay strong and thanks for you’re encouraging words. I will be thinking of you and the new grand babies. My mom was thankful for all her daughters her last year. We did the best we could. Happy Mothers Day to you as well.
Jan
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Jan,
Thank you for sharing and I am so sorry you went through all of that.
Dental implants are no joke, and although I thought I would end up with them when I lost my two front teeth, my Periodontist was very wise and conservative and we found a cosmetic alternative. That isn’t always possible.
I will keep you in prayer for a successful procedure and that you find a medicine that helps.
Kalí
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Hello, I want to thank you as always for keeping your readers posted. And I am so sorry about those stresses! I don’t have any updates myself, but if anything helps my burning sensation, which is only on the left side, I’ll be sure to let you know.
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