Hello Dear One!
Disaster Strikes: The Tri-Geminal Neuralgia Returns
And then the tri-geminal neuralgia came back for another very invasive visit. Every day there was a small shock: washing my face, walking in the wind, setting my head down on the pillow. I was now 50 and remarried to Bob, who was stunned by the ferocity of these painful attacks. Having done what I thought was such a good job of getting through life, I must admit that I felt deep shame that I could not do anything to escape or unwind this pain.
I Was A Controller Who Could No Longer Control Anything!
I found another neurologist who still offered only drugs and who explained that these drugs were not even diminishing the pain. Rather, they helped my brain not feel the pain. I sank deeper and deeper into a life that could accommodate the pain. I could not shower or brush my teeth. I could not go outside on windy days. All my food had to be liquified and I sipped it down slowly and carefully though my slightly opened jaw.
I had to take time off from work and stop teaching yoga, because attempting to talk would set off cascades of electric shocks. I was horrified and depressed. But crying was not permitted, because the tears rolling down my cheeks set off an unstoppable cascade of nerve pain that felt as though I had plugged my head into an electric outlet.
At first warm compresses gave me some relief and then they, too, instigated attacks. My doses of medication, tegretol, increased gradually until I reached the limit. At one point, I reacted to the medication and became dehydrate, requiring a trip to the emergency room and a short stay at the hospital. The attending neurologists came in to see me, fiddled with my medication, and did a lot of shrugging. They then prescribed lyrica, which, even at a low dose, caused me to hallucinate that I was a trapeze artist at a circus performance!
I Created A Bubble Around My Face
My face was a “no touch” zone. My day began with cautiously getting up and getting dressed by keeping shirts away from my face. Desperately trying to discern a pattern, I charted my attacks on a calendar – how many, at what time, and with what ferocity.
I made my food and slowly sipped it down; I rested on the floor where I used to do yoga and simply breathed, which brought me some relief. When you are in this much pain, a huge fog of fatigue surrounds you – everything is an effort, and nothing seems worthwhile. I was stuck in a deep crevasse and couldn’t see how to climb out and retrieve the life that now seemed like a faraway dream.
As inexplicably as the neuralgia came, the shocks became less and less frequent and my normal life resumed. I weaned myself off the drugs and visited the doctor near the end of this process, who seemed glad that I was feeling better.
When I asked her what I could look forward to, she smiled sadly and said, “Well, this condition generally gets worse and more frequent as you age.”
“Great,” I thought to myself, “That’s just dandy.” And, I returned to my former life, tucking that advice deep into a pocket, hoping against hope that that damn doctor didn’t know what she was talking about. I knew that my old control strategies would not work going forward, yet I still had to somehow “own” my self-care. I could not sink into victimhood. But I began to pose a question suggested by Dr. Edith Eva Eger in her recent book, “The Choice: Embrace the Possible” (Scribner, 2017, p.7).
Instead of “Why Me?” Ask, “What Now?”
When I returned to teaching yoga after this searingly painful experience, things didn’t look quite the same to me. My students were often 20 years younger than me. I could still lay on my back and pull my ankle behind my head, and nearly get into splits, and almost sit comfortably in full lotus.
My students admired that “at my age,” I could still do these poses. They said, “I hope I can be like you, when I’m your age.” I used to glow when I heard these compliments. But, this conversation was beginning to have a shadow side for me. Perhaps I wasn’t supposed to be struggling to get into these extreme poses. Perhaps, I asked myself, shouldn’t I be contemplating the most supportive way to travel through my sixties and seventies? And, perhaps, sharing this knowledge with others?
And so, I found myself one hot August day in a crowded room at Kripalu with Jill Miller and several extraordinary assistants ready to begin my Yoga Tune Up® Level 1 teacher training. My mindset was still one oriented toward fixing body parts in better ways than I had before. So I was thrilled beyond belief when my back pain simply dissolved after I learned to do revolved abdominals.And, I was incredulous when my right shoulder, which preferred being frozen, softened and willingly opened up with epaulet circles, pranic bath, and propeller arms.[Head over to my YouTube Channel to see some the therapeutic movements I practice: Search on YouTube for AnnMerle Feldman.]
But Jill Miller surprised me, and many of my eager colleagues in the teacher training program, when she insistently took the conversation to a new level, challenging us to tell her what the largest core muscle in the body was.
I smiled accommodatingly but stared blankly at her until she was forced to answer her own question – the respiratory system! I wrote this down in my notes, but still did not understand why she was so insistent that we “get” this concept. And, what was wrong with fixing the parts of my body that hurt? When I arrived at teacher training my back hurt. Now it didn’t. Wasn’t that what I needed to learn?
That night, sprawled across my twin bed next to my equally exhausted roommate, Riannon, I read in my manual about the respiratory system. I was trying to make sense of Jill Miller’s insistent diatribe that, when we think of core strength or core muscles, we ought to focus first on the respiratory system and not, as I wanted, on the muscles that would undo my low back pain.
Nervous system? Hmmm. Nervous system?
Jill had spoken of the relationship between the breath and the nervous system. This was all new to me. Nervous system? Hmmm. Nervous system? My problem in my head was with my nerves. I needed to know much more about this connection. I read eagerly. I knew that when I was in the midst of a tri-geminal neuralgia attack, breathing slowly was about the only thing that helped me to get through the day. Why was that? I had the feeling that I was on the cusp of learning something new, of putting the pieces together in a new way, of being able to support my healing in a new way.
Slowly, what Jill Miller and her intrepid band of assistants taught us, through their own stories of healing, though movement, through rolling on the massage balls, though shavasana, through our training manual and through our homework we learned that the body was an integrated whole and no part works independently of other parts. So, even if I understood this intellectually, my more important job was to feel this in my body and shift the way I viewed movement and healing for myself. I had a strong feeling that I was going to find answers I couldn’t even imagine at this point.
“What Now” Means Focused Breathing, a New Eating Plan, and a Fascinating New Supplement
I had begun to see a functional medicine doctor who helped me get through yet another difficult episode of trigeminal neuralgia, approaching this condition from a variety of new perspectives. An episode had begun and was escalating. I was frightened and determined to do something different than I had in the past. I searched and searched for someone who could guide me through these episodes without the insult of medications that turned me into a zombie and barely diminished the pain.
I found that doctor and for the long term, he put me on an anti-inflammatory, high fat/low carb diet with plenty of leafy greens. He surprised me by going beyond gluten free. “No grains at all,” he said, to my surprise. I asked, “No whole grains, like oatmeal, or millet, or gluten-free breads? “No,” he said. “You must do everything you can to reduce inflammation. Fats are good; carbs are bad; vegetables are best! Guessing that if inflammation was causing pressure on my fifth cranial nerve, the diet would help reduce that inflammation.
And, on my own, while I was in Denver visiting my son and his family, I learned about a supplement called CBD oil or hemp oil. My daughter-in-law was trying it out for my 3-year-old grandson, who was on the autism spectrum. She was using a brand of CBD oil developed by a company called Charlotte’s Web, which did a lot of brain research and was helping children with a variety of brain issues. She explained to me that this was the non-psychoactive, or THC (Tetrahydrocannabinol), part of the hemp plant, which makes you high. This plant-based oil was not THC, but rather CBD (Cannabidiol) and was legal, but, could possibly help with my pain and the anxiety caused by the situation I found myself in.
I tried my sister in law’s hemp oil and felt a very gentle, pleasurable, calming sensation and wondered if this could help me get through painful episodes of tri-geminal neuralgia. I asked her several times if it was legal and she insisted it was. I went over to my computer, ordered a bottle, and had it sent to my home. About two weeks later, I laughed in surprise when the bottle showed up at my door.
“Ha!,” I exclaimed, “I guess it must be legal if they shipped it across state lines.” I began to use a dropperful of the chocolate flavored hemp oil every night before bed. It certainly helped me sleep and I figured that I was learning to tame the non-stop energy that had fueled me through most of my career.
The Unexpected Happened!
My stepson, Aaron, was marrying his sweetheart, Eve, in the mountains of Colorado and I was determined to be there. An episode of tri-geminal neuralgia was well underway, but I was able to avoid the dreaded medication by taking a version of prednisone to bring down whatever swelling surrounded my tri-geminal nerve, but I knew that this was not a drug I could take very often. Of course, I continued with my new diet and the Charlotte’s Web hemp oil.
My first day in the mountains (which was just one day after landing in Denver) found me struggling to adjust to the altitude. I drank lots of water, but the higher we went, the more attacks I had. I didn’t know why, but I assumed it had something to do with lack of oxygen. My brother, David and sister-in-law, Bobbi, and I had planned to use that first day before the wedding festivities to do some hiking. I was more than a little nervous, given the fact that I was in the middle of an episode, but I told them what was going on and said I might have to turn back.
But something unusual happened. We found some well-marked, but very steep trails. I was already at 7000 feet, unprepared, not at all well-adjusted to this altitude and very afraid that my head would explore into shrieks of pain. I was fit, but I lacked oxygen. I counted 10 steps and then stopped and took in 10 mega breaths, just as I had learned in my Yoga Tune Up training and in all of my previous yoga training. I felt my chest cavity expand further with each inhale. Then I went higher. I kept those inhales going. David and Bobbi just kept going at a steady pace, but my walking and breathing pattern was working really well for me. I was completely flabbergasted that I never had a single shock while hiking and pulling oxygen into my lungs.
Then, when we got back in the car and went to dinner with others, suddenly the shocks started again. I wasn’t breathing consciously, and I wasn’t moving much and, I suppose, the lack of oxygen was having its way with me. This strange experience was on my mind as I made a reservation for a Roll Model Method® training and my next visit to Kripalu! Just the fact that I had experienced a cessation of attacks in the middle of an episode, helped me to feel that I was operating in a “What’s Next?” mode rather than sinking back into victimhood, which is easy to do when pain appears and seems to want to take over your life.
Until next time!
Love and Gratitude,
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