Tag Archives: Clonazepam

Not So Sweet Sixteen with Burning Mouth

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Every year in May now, I join Great Strides for Cystic Fibrosis, fundraising and supporting my oldest grandson in his fight with CF.

I celebrate Mother’s Day with my family…

And I mark off yet another year of Burning Mouth Syndrome/Disorder. This year marks the sixteenth anniversary and the beginning of the seventeenth year because there is no cure or even a reliable treatment in sight.

Sounds a bit melodramatic, doesn’t it? Believe me, if you felt what we feel every single day, you might slip a bit into the dramatic side yourself!

I have described Burning Mouth Syndrome/Disorder in this blog several times over the years, so I won’t make you read that again, but you can definitely find the definition here in prior posts.

Today I made my yearly pilgrimage to the Neurologist to check in, renew my Aimovig prescription (For migraines – VERY effective), renew my Clonazepam ODT prescription (helps me deal with the daily burn), and to talk about any other options that may have come up in the past year.

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Dental Work, Flares, and Burning Mouth

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Those of you who have been reading this blog or checking in on the “About Kalí” page know that I suspect that dental work was a major contributor to my chronic burning mouth. I can tie the syndrome to dental work in both instances it has occurred in my life and even a dental cleaning, no matter how gentle, can cause me to have a minor flare in burning intensity.

Sometimes you just have to get something major done though, and for me, it was the recent replacement of a very deteriorated crown. It was on my lower left back molar and the porcelain cladding had chipped way over the years until I was chomping on metal.

Eventually, I broke through the metal and actually had a hole that could lead to decay and abscess, and my dentist and I decided it was time to “bite the bullet” and replace that crown.

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Is COVID Over? – Burning Mouth Updated

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The last time we spoke, I was sharing my decision to ramp off the EffexorXR that seemed to be helping the burning mouth pain, but causing other side effects that cumulatively overwhelmed that benefit.

I ramped down under my Neurologist’s instructions – I can’t stress how important it is that you don’t just “stop taking a prescription!” Your body isn’t built to do that and you can cause yourself so much damage and pain that is not necessary at all! Even with ramping off gently, there can be a few side effects so please do this only under a doctor’s supervision.

I had just finished the last week of minimal doses and had discontinued the medicine when…(insert dramatic music here) COVID hit me like a ton of bricks!

Now those of you out there who have had it one or multiple times, or had mild cases of it are probably wondering, “What’s she making a fuss about?”

It was my first time. End of 2019-2020-2021-2022- and most of 2023 and I had dodged the dang bullet. I masked, I vaccinated, I distanced…and now at the end of 2023 I must have lowered my guard a tad too much, or even more likely, this variant is a sneaky one! We still can’t figure out where I may have picked it up because it was a pretty constrained weekend with family and no one else got it! Thank God for Paxlovid, because it had my symptoms under control in a matter of days.

Here’s what you came for:

What did going off Effexor XR do to my Burning Mouth pain?

What did having COVID do to my Burning Mouth pain?

What did taking Paxlovid do to my Burning Mouth pain?

Are we done with COVID???

I am so sorry to say that the answer to the first question is “Not a lot.” My burning is at a fairly moderate level right now and discontinuing the medicine did not change that much at all. I am still taking one dose of Clonazepam ODT around dinner time and that seems to be keeping me stable.

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Another Med Bites the Dust – Burning Mouth Disorder

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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.

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Summer Heat and Your Burning Mouth

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© Can Stock Photo Inc. / AntonPrado

Summer has begun in Central Texas. Yay?

We are getting excessive heat warnings from the Weather Advisory and anticipating high temps ranging from 103 to 108 degrees or more over the next week. Oh yeah, and with high humidity to intensify it!

Does anyone out there struggle with the pain of Burning Mouth Syndrome when it is hot?

I do, and the only things that help me are the following:

  1. Getting plenty of sleep.
  2. Getting plenty of hydration. As they say down here in Texas, “If the number of times you have to go to the bathroom doesn’t annoy you, you aren’t drinking enough!”
  3. Being prepared to add a little to my meds if they are flexible. I find a .25 mg dose of Clonazepam ODT, dissolved and swished around on my tongue, will back off the intensity until it is time to take my regular .50 mg dose around dinner time.
  4. Avoiding overheating in general. Some of our medicines can make us more susceptible to heat and may even cause us to suffer heatstroke if we aren’t aware of it. Check your medicines and see if there are any warnings.

That’s all I’ve got! Do you have any strategies you use and would like to share?

Let us know here in the comments and stay cool out there!

Why You Should Do Yearly Checkups – Burning Mouth

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Photo by CanstockPhoto-Ankabala

Yesterday, I spent some quality time with my Neurologist at my yearly checkup. We discussed my medicines (Effexor XR and Clonazepam ODT) and discussed how the mix had changed and whether I should continue on them now that I have begun my sixteenth year with this disorder.

Our consensus together was yes. Effexor XR has lessened my need for the Clonazepam ODT with minimal side effects at the dose I am taking. I start tingling within an hour after breakfast and that sensation increases in the normal cycle of primary BMS until late afternoon/evening when I take one low dose of Clonazepam ODT.

This serves two purposes. It interrupts the cycle of intense tingling so I get through my evening when it would usually be the worst, and it allows me to fall asleep easily and quickly. Sleep is painless for primary BMS sufferers and my body gets the rest it needs. The more rested and hydrated I am, the less pain and tingle I experience.

All of this routine can be completely upended during a flare (You folks with BMS know what I am talking about!), and I have the go-ahead from my Neurologist to increase my Clonazepam ODT dosage up to 2 milligrams if necessary. Even my worst flares have not required that much Clonazepam, but it is nice to know it would be okay if it did.

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Year Sixteen Approaches – Burning Mouth

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(c) Can Stock Photo / ragsac

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.

Effexor XR is a Qualified Success

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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.

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When Contemplating a Flare – Burning Mouth

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Over the last few posts, I have kept you up to date on my new medication, Effexor XR/Venlafaxine HCI.

My Neurologist initially prescribed a very low dose with no effect. We doubled it and saw the burning neuralgia back off into a tingle for most of the day. We doubled it again and got amazing relief that lasted all through the day, keeping the pain to a very tolerable tingle. Then the side effect of muscular tics began and we had to cut that little honeymoon short.

The upshot?

I am back on that medium dose of 75mg per day and I usually have just a light tingle that escalates. Sometimes I can skip that late afternoon dose of Clonazepam ODT, but other days I need it to blunt the tingle that is becoming too strong. I haven’t had a real flare yet with Effexor XR so I am unsure whether that means it is preventing them, or the stars just haven’t aligned yet. I will let you know because the ultimate test looms ahead!

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