Use of Botox in TN Treatment

By Jan Williams from notes of the TNA Conference

There have been some very limited studies done on the use of Botox for the treatment of TN.  The first report came from a group of 13 patients in Brazil who were treated with injections of Botox into the skin of the face. (Cosmetic injections of Botox are normally given into the muscle). Within 10 days all 13 people reported a decrease in TN pain. By the end of 60 days,  only 4 of the 13 remained pain free.

Since the active ingredient is actually a protein that is a “neurotoxin”, they believe the best results would come from the injection of the Botox into the skin near the trigger points for TN.

Neurotoxins prevent nerves from functioning properly and in the case of TN interrupting the function of the Trigeminal Nerve may be a good thing.

The number of patients studied so far is very small and they have not been able to do proper follow-up evaluations or blind study comparisons. However, Dr. Krusz who presented this session thinks the use of Botox for TN should not be discounted. He thinks it merits more study. His closing comment was to “stay tuned” for further information.

The Botox used for medicinal purposes comes from one particular strain of the Clostridium Botulinum. It is purified and processed so that there is no danger of a person getting food poisoning from these injections. There are currently a few studies on the use of Botox for the treatment of Migraines. One is being done at the University of California. Dr. Glogou has reported that 75% of his patients treated with Botox have 4 - 6 months of no migraines. He says “Though the mechanism for migraine relief is not known, Botox® injections paralyze the muscles in the face and head. Botulinum toxin A may stop the expression of pain by stopping muscle contractions that lead to spasm, he explained, or it may inhibit nerves that transfer pain responses to the brain and spinal chord. In all likelihood, it does both”.

Link to research article

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6643497/

Our Stories:

Ken,  Calgary

      I was convinced Botox would help. Even my doctor son thought the same. However things became worse after injection in RV3. I have had severe difficulty with all six branches.

Over 30+ years I have tried them all. I was an airline pilot (first in Canada with MS) so I was very closely monitored. Now dead, Dr. Don Paty of Vancouver took me under his wing as I had a unique situation. He and Dr. (Hashimoto_were originators of the Vancouver clinic. I thought of him as Dr. MRI and Dr. beta interferon. He was first to introduce both to MS. Dr. Paty went to Ottawa at his own expense to teach the Aviation Review Board about MS. The convincing statement was "he would have no difficulty flying on my airplane." 

While temporarily grounded I found the most helpful meds to be methadone until the "old boys club" became twitchy due to ignorance, then ended up on Fentanyl. Under a competent doctor's care I have never had difficulty coming off any drugs. Over the years I have had ten sublingual radiofrequency rhizotomies (remember all branches affected). Most of those were done by Dr. Chris Honey in Vancouver. Fantastic surgeon. The last one did not go as planned so that ended that very helpful treatment. Not to be feared. 

My Calgary neurologist, Dr. Scott Jarvis has me now on Tizanidine and Lamotrigine. I am off almost all others except We will discuss Fentanyl. Opioids have always worked for me with little success with the old standards. 

Sorry I do not have time to proof read and this would be more short if I had more time.

Sherry (Calgary)

The Botox did decrease the severity of my symptoms but not take it away completely. Of course at the Chronic Pain Center the standard question is always to rate how effective or how much worse things are, and you keep a pain diary. Not my favourite thing to do. Looking back on that I would say that I experienced about a 25-30% improvement after the Botox injections.

I had the injections in my brow and along the right side of my face only. I did have as a result a “droop” to the right side and a significant difference when I smiled, with not being able to smile very much with my right side. For me not a significant drawback as at that time I just really needed help with the pain. In the same situation I would have the injections again without a qualm. The most difficult aspect of the injections was the actual day of the injections, not the most pleasant experience. Dr. Becker was really great, when I had episodes of TN during that process he always waited until they passed before beginning again. Each treatment was about 20 injections, they were repeated every 3 months. It was also my choice to inject only my right side, he would have balanced my face if that was my preference. I have been fortunate to have had a second MVD operation in Calgary in January of this year. My first was done in 2014 in Winnipeg with Dr. Kaufmann and I experienced a relapse in 2016. Dr Mitha did the surgery in January. I have had a good result and I am now in the process of reducing, very gradually my medications.

From Wendy (Errington, BC)

I had Botox injections for my combo of TN1 and TN2. But I didn’t find it made any difference for me. This would have been about 10 years ago.

My niece has regular injections along her hairline for chronic migraines and it is about 50 percent effective, which she feels is worth it, although it is very expensive.

I only tried it the one time. I had a tendency to cycle quickly through both medicines and procedures in my hope for relief, perhaps not giving each a proper amount of time. I really can’t talk about it in an expansive way, because I don’t remember anything other than that it didn’t work so I hurried on to the next possible cure. (Still looking!)

Anne (Calgary)

I did take it and still do, but not just for the trigeminal flutters that I still get once in awhile since my MVD surgery. Where my incision cut through muscle, I get horrible pain in my shoulder, neck, upper bad and left arm. The Botox works super well for that. Botox stops the flutters . The Botox along my forehead had stopped the flutters though.