Canadian Trigeminal Neuralgia Association

CaTNA News and Stories

If you have a news item or if you have a story to share, please send it to help@catna2.ca.  In some instances it is possible to contact the person who submitted that item and in those cases a link will be provided.

Medical Marijuana for TN

I looked on line and I found it very difficult to locate any scientific studies on the use of CBD for the treatment of TN. There are lots of “advertisements” by various organizations promoting Cannabis and lots of stories by individuals – but no formal University based studies. I assume those are not available because until recently the use of Marijuana and its components was not legal. In the near future I would expect to see more studies exploring the effects of both CBD and THC in the treatment of chronic pain.

I found the following post in a Harvard Medical School blog:

Medical marijuana

POSTED JANUARY 15, 2018, 10:30 AM by Peter Grinspoon, MD

There are few subjects that can stir up stronger emotions among doctors, scientists, researchers, policy makers, and the public than medical marijuana. Is it safe? Should it be legal? Decriminalized? Has its effectiveness been proven? What conditions is it useful for? Is it addictive? How do we keep it out of the hands of teenagers? Is it really the “wonder drug” that people claim it is? Is medical marijuana just a ploy to legalize marijuana in general?

These are just a few of the excellent questions around this subject, questions that I am going to studiously avoid so we can focus on two specific areas: why do patients find it useful, and how can they discuss it with their doctor?

Marijuana is currently legal, on the state level, in 29 states, and in Washington, DC. It is still illegal from the federal government’s perspective. The Obama administration did not make prosecuting medical marijuana even a minor priority. President Donald Trump promised not to interfere with people who use medical marijuana, though his administration is currently threatening to reverse this policy. About 85% of Americans support legalizing medical marijuana, and it is estimated that at least several million Americans currently use it.

Marijuana without the high

Least controversial is the extract from the hemp plant known as CBD (which stands for cannabidiol) because this component of marijuana has little, if any, intoxicating properties. Marijuana itself has more than 100 active components. THC (which stands for tetrahydrocannabinol) is the chemical that causes the “high” that goes along with marijuana consumption. CBD-dominant strains have little or no THC, so patients report very little if any alteration in consciousness.

Patients do, however, report many benefits of CBD, from relieving insomnia, anxiety, spasticity, and pain to treating potentially life-threatening conditions such as epilepsy.

Uses of medical marijuana

The most common use for medical marijuana in the United States is for pain control. While marijuana isn’t strong enough for severe pain (for example, post-surgical pain or a broken bone), it is quite effective for the chronic pain that plagues millions of Americans, especially as they age. Part of its allure is that it is clearly safer than opiates (it is impossible to overdose on and far less addictive) and it can take the place of NSAIDs such as Advil or Aleve, if people can’t take them due to problems with their kidneys or ulcers or GERD.

In particular, marijuana appears to ease the pain of multiple sclerosis, and nerve pain in general. This is an area where few other options exist, and those that do, such as Neurontin, Lyrica, or opiates are highly sedating. Patients claim that marijuana allows them to resume their previous activities without feeling completely out of it and disengaged.

Along these lines, marijuana is said to be a fantastic muscle relaxant, and people swear by its ability to lessen tremors in Parkinson’s disease. I have also heard of its use quite successfully for fibromyalgia, endometriosis, interstitial cystitis, and most other conditions where the final common pathway is chronic pain.

Marijuana is also used to manage nausea and weight loss, and can be used to treat glaucoma. A highly promising area of research is its use for PTSD in veterans who are returning from combat zones. Many veterans and their therapists report drastic improvement and clamour for more studies, and for a loosening of governmental restrictions on its study. Medical marijuana is also reported to help patients suffering from pain and wasting syndrome associated with HIV, as well as irritable bowel syndrome and Crohn’s disease.

This is not intended to be an inclusive list, but rather to give a brief survey of the types of conditions for which medical marijuana can provide relief. As with all remedies, claims of effectiveness should be critically evaluated and treated with caution.

 

Stories:

Brenda (Niagara Falls, ON)

I have been using CBD oil for over two years now, and it has made an incredible difference.

I had been relatively pain free for several years following a successful MVD, but a few years ago, those familiar pains started resurfacing.  I considered having another MVD, but first went to a Cannabis Clinic to ask about Medical Marijuana.

I met with a doctor and counsellor there, and was given a prescription for CBD oil (very low THC).  I found a difference within the first few days.  Initially, I slept better, and found it to be very relaxing and helpful with anxiety.  But, in addition, I found it greatly reduced the severity of my TN flares.

I am very thankful for the benefits it has provided me.

 

Name withheld from Ontario

I have “atypical TN”, and surgery is not an option for me. I have been going for Trigeminal Nerve Block injections for several years. I need to go about every 6 months. The Doctor uses a local anesthetic first and then injects while visualizing the area with fluoroscopy. The feeling of numbness disappears within 24 hrs.  I have been able to control the pain with CBD cannabis oil daily combined with the injections for the past two years without Tegretol or Gabapentin. After 6 months I notice the pain increasing in severity again.

 

May 22/19 update: Now I need Tegretol 200mg plus the CBD Cannabis and a nerve block every 6 months to manage my Atypical chronic TN pain. This cocktail seems to be working but the side effect is rolling vertigo. Physio says my vertigo is a caused by “vestibular neuritis” on the same side of my face as the TN and are “likely connected”.

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”.

Our Stories:

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.

Calgary meeting April 16, 2019

Drugs used in TN Treatment There are a number of drugs used either alone or in combination. Some of these like Tegretol have been found to be very effective but with serious side effects in many people. There are some guidelines that apply to all drugs.

1. These drugs need to be taken as prescribed. They are not like normal analgesics that you just take when you need them. They require a level in the blood to be maintained.

2. These drugs are toxic to children and pets in therapeutic adult doses. Keep them safe. 3. Allergies do happen so watch for rashes, difficulty breathing and/or unusual swellings.

4. Narcotics do not seem to affect TN pain.

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Stories:

I am not taking any drug for TN but I am taking gabapentin.  This is simply a point of interest.  Since my concussion I have had a lot of facial pain.  The neurologist who treated me told me to try gabapentin for that pain.  It works like magic and if I ever forget to take it my face certainly reminds me.  As I said, just a point of interest.   I certainly hope you and all the group are living a pain free life as I am.  Helen

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I was initially prescribed Valium (misdiagnosed) and then Tegretol which was ineffective. Then Gabapentin, for several months which on it’s own did little except make me groggy. The Gabapentin, Tramadol cocktail did provide some relief but I needed to keep ramping up dosages as time went on. This became untenable and I did develop a dependency on Tramadol that post surgery took well over a year to wean off of. The Microvascular decompression surgery was fairly successful. I’ve had a few recurrences but they are not as severe and they tend to go away after some time. I’ve had periods of several months at a time in complete remission so I feel pretty fortunate at this time. Frank

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Initially I took Tegretol but when that stopped working so well and the increasing doses caused liver damage and disruptive side effects like brain fogginess, tremors, falling asleep, etc. Then I tried Neurontin which did not control the pain at all. So I added back the Tegretol so I was taking Tegretol 1200mg and Neurontin 1800mg. Eventually I read about Trileptal which reportedly had fewer side effects than its cousin Tegretol. For me that turned out to be true. There was a dramatic decrease in side effects when I replaced 1200 mg of Tegretol with 900mg of Trileptal. Note: at the time Trileptal was not covered under Blue Cross but to me it was well worth it to have my life back. I had the MVD in 2003 and am living “happily ever after” drug free.    Jan

Feb 2019

Gamma Knife Stories. I asked people to share their experiences with Stereotactic radiosurgery and to explain the preparation, what the actual procedure was like, how long before the results were noticed and how long did the pain relief last. Here are some of the stories:

Art T: 1  Preparation:  They only applied a gel 1 hr before the procedure and it did nothing 2  the pain occurred  when the  nurse and  Dr. administered 4 needles of xylocaine/lidocaine to my forehead and back of skull –  barbaric supposedly this procedure has been modified.  Attaching the Halo device was a bit traumatizing considering I could feel all 4 screws being put into my skull and when they were tightened by a wrench key I felt pressure.  A quick CT was made and then a technician did some measurements and then I went into the radiation chamber. 

3 It was about 6 mths before I felt no pain and was pain free for approx 5 yrs before the “BEAST “returned and I had to go onto meds again

4 I was prepared to do it again (gamma knife\) but my Neurologist advised otherwise. 5. My meds of Gabapentin and Lamotrigine have me for the most part ok

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Jack M: I had suffered  pain in my right jaw since September 1998 which was diagnosed as TN an oral pathologist in December 1999.   My treatment involved Tegretol for 5 years which controlled the pain fairly well but I would suffer recurring pain flares ups every 6 weeks which lasted for one week and made even brushing my teeth very painful.  In 2006, the doctor switched me to Lyrica which gave me longer relief but I still experienced  flare-ups.

1. The only preparation that I can recall is on June 3 having a CAT scan and a MRI scan of my head. I also had a metal frame attached to my head with two screws into the surface of my forehead bone.  The area had been anesthetized and the screws were painless. The frame was necessary in order to improve the accuracy of the gamma ray bombardment on the trigeminal nerve.

2. During the gamma knife surgery, I had absolutely no pain. I experienced no headaches during or after the surgery.

3.  The following day in the morning I noticed that the TN pain had vanished completely from my face and jaw and I began an immediate withdrawal from all medication. In the next six months, I was pain-free. Sometimes when I slept on my right side, I would have a slight discomfort in my jaw that lasted 5-10 minutes but it did not occur very often.  I had no numbness or loss of sensation in my face. In my 18 month follow- up examination, I could report that I was completely pain-free.

4.   It has been almost 11 years since my gamma knife radiosurgery and during that time I  have enjoyed a pain-free condition thanks to this marvellous radiosurgery technology. It’s interesting that the nerve once every two years will still give me  a small jab in my jaw for a micro-second.  I surmise that it is giving me a subtle reminder that it is still there although it’s very much under control.

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Werner R: I had had a Gamma Knife procedure in 2013 in Sherbrooke, Quebec. In Quebec they asked all the normal health question and did another MRI. The day after, I was in the MRI machine with kind of a mesh helmet screwed into my head bones. That was the only thing that hurt. Even weeks later I could feel where the screws went in.

I came out of that machine and had no TN pain anymore. I cut the Carbamazepine two days later to zero. I know I was supposed to easy off slowly but I had no problems.

I think it was about three years later some pain came back in the form of having a feeling in my nose and lips like I’m outside at -40C first and some numbness in my left face. Then the electrocuting pains were coming back and increased and increased. So did the dosage of Carbamazepine.

I went back to Quebec in June of 2017.  The doctor said he won’t risk an other procedure as my symptoms are not strong enough yet, Hahaha. I was over 2000mg Carbamazepine already. But he said the side effects of a repeat Gamma Knife could be worse than what I had.

Last summer 2018 I was over 3400mg of Carbamazepine and was almost on my knees and asked to be referred to Dr. Kaufmann in Winnipeg. My GP would not make the referral. Then early September I jumped off a deck at my neighbours house to break up a dog fight. The next morning I woke up and had almost no pain. ??? Since then I get away with about 800mg Carbamazepine, with the occasional 1000mg. I can feel it coming.

My family doctor is now willing to refer me to Winnipeg but I need to wait until after the winter because it is very difficult to find a house sitter to look after my home here in the Yukon.

Jan 2019: Terry from Calgary

I tried the medicinal cannabis for approximately six weeks. It did nothing for me at all. I’m the one with type B or whatever they categorize it. ( the constant tingling or twitching) The carbamazepine seems to keep it under control and it’s not as bad as it was in the beginning.

Nov 2018 – DYI Acupuncture Experience

This story comes from Rene who lives in Quebec: At first I thought my teeth were causing the pain and the dentist never said what he knew was happening. So ago I went to see a chinese practioner who had a pile of degrees. He did acupuncture and then after several treatments I decided to do the accupuncture myself. A medium sharp object to the side of the middle finger near the tip. Anybody interested I can give more instructions. IT WORKED FOR ME.

November 2018 – Nerve Block Injection

I have been going to Dr. James C Brown MD Anesthesiologist at “The Interventional Pain Specialists “ in Richmond Hill ON for Trigeminal Nerve Block injections for several years. I need to go about every 6 months from my home here in Sault Ste. Marie, ON…a 9 hr drive. Dr. Brown uses a local anesthetic first and then injects while visualizing the area with fluoroscopy. The feeling of numbness disappears within 24 hrs. I have been able to control the pain with CBD cannabis oil daily and the injections for the past two years without Tegretol or Gabapentin. After 6 months I notice the pain increasing in severity again. Dr. Brown tells me that he is not always as successful with TN patients as he is with me. I have “atypical” TN according to Dr.A. Kaufmann in 2010 .Dr. Kaufmann advised me against surgery. Dr Brown is willing to see other TN patients..his ph # is 905-237-4623 fax 905-237-5098. A physician referral is required. OHIP covers all the costs and I apply for a northern travel grant.

November 2018 – MVD Success

This year marks the 15th year anniversary since I had a successful MVD in Winnipeg.  Since then I have had no pain and no drugs.  Life is good.

To honor this anniversary and recognize others who have had successful MVDs, we had a “tea party” at the last Calgary TN support group meeting.  There were 7 people who had MVDs representing 53 years without TN pain.

Contact Jan

October 2018 – Nerve Block Procedure

Dear Fellow TN Sufferers,

      I recently discovered an valuable resource in Calgary. Dr. Jarvis is a neurologist with a MS interest, and operates a clinic at 16th St and 17 Ave. S.W.. He has learned a new nerve block procedure for TN patients. I believe he is the only physician in Calgary using the procedure. It is quick, painless, and administered by a doctor with a terrific bedside manner. 

      Over the years I have had nine or ten percutaneous rhizotomies, and therefore feel qualified to comment on a tool that provides relief from TN.

Ken,  Kelowna      email Ken

Other Stories – CSF Leaks after MVD

Francis from Calgary had an MVD done in 1999. A few days after she went home she noticed clear fluid draining from one nostril and draining down her throat. She also had a salty taste in her mouth and had no appetite. She was readmitted to hospital. She had an unsuccessful lumbar puncture the first day. The plan was to repeat that the next morning, but the leak stopped overnight so no further treatment was necessary.

Marilyn had her MVD done in Calgary in 2005. After about two weeks, she noticed clear fluid draining from one nostril. She was advised to stay in bed for a few days. When that failed to stop the leak, she was admitted to the hospital and had a drain inserted via a lumbar puncture. After about ten days, that was successful. The leak stopped and she returned home pain free and problem free.

 Ray from Yorkton had his MVD done in Winnipeg May 6th. He woke up from the MVD TN pain free and for the next two weeks was busy weaning himself all the drugs he had been taking. Then he noticed some clear fluid draining down the back of his throat and our one nostril. On the advice of his doctors he stayed at home taking it easy. That didn’t seem to help.

He returned to Winnipeg and was in hospital again for five days, during which time he had a drain placed via a lumbar puncture. For the first day, they drained 30 ml of CSF per hour; then 20ml the next day; and 10 ml per hour on the third day.  The leak stopped. 

Ray is home again still with no TN pain which is great, but he still worries about the CSF leak. At the moment, there are  no signs of recurrence, but at the time this newsletter was prepared he was having some trouble with a headache.

We have our fingers crossed for you Ray!!