Me, Migraine and I - Part Two
Updated: Feb 18
It has been about 11 months since I wrote 'Me, Migraine and I - Part One' and almost 13 years since the beginning of a very surprising journey into the depths of chronic pain.
My migraines have stopped completely. Whaaaaat??
I was told by my specialists that there was no cure for chronic migraines. Migraines, yes, chronic, no. The best that I should hope for is a 50% reduction in the number of migraines that I had per month if we could find the right combination of prescription medications and procedures.
But they are gone!
I just had to write that again.
I think I still seem so incredulous because the most surprising transformation came in the last 90 days. I say 'surprising' because with the last change that I made they went from a level 2-3 pain every week (sometimes 2x week) to absolutely nothing. Nothing. Today I am chronic migraine free for over 3 months!
Originally, (first migraine blog here) I had been having between level 7 - 10 pain levels looong 30 plus hour migraines 2/3x a week (often in pain daily) for 12 years. During my time in a 4 month migraine freedom programme the pain levels and the symptoms had drastically reduced. But there I was, still with them albeit completely transformed in terms of pain levels and number of debilitating symptoms AND I had returned to work.
Do you know what was weird though? The migraines had lessened and lessened but my anxiety and low moods and loads of other aggravating symptoms were jumping in and out of my body. Tooth pain, my back went out a couple of times, sciatica, knee pain, hip pain, I still had daily pelvic pain. I couldn't chew for a few days due to jaw, ear and eye pain every time I closed my mouth, my ears would whistle shrilly for a few minutes every couple of days, gastric pain, diaphragm pain, I couldn't turn my head to the right for a few days, I had a painful elbow and I couldn't lift things with my right arm for 5 months, hot flushes that I'd not had for years returned, episodes of crying for a couple of days at a time, jolts of the beginnings of cystitis that would then disappear again... just to be clear, I had had all these pains for months at a time during the first 6 years of the migraines but a lot of them I hadn't had for many many years. They were not as bad as they used to be but here they were again? I was still ecstatic though. I kind of didn't care.
'I don't have debilitating migraines every goddamn day, wahooooooooo!!!' I would yell to myself giddily.
At this point I had bumped into a podcast by Nicole Sachs that I was becoming more and more interested in. She was a colleague of Dr. John Sarno who wrote Mind Body Prescription and Heal Your Back. She was affiliated with Curable, a chronic pain App that I had used and Curable was also promoting the work of Dr. John Sarno albeit with some new cutting edge information on neuro-plastic pain, pain and the brain and brain science/neuro science that wasn't available in Dr. John Sarno's day. Apparently, my strange symptoms (symptom imperatives) were very common during and when healing from chronic pain - ALL of them. So, I started to listen and read.
Along with doing anything that would help the nervous system calm down I started journaling. I had used the Curable App before and done everything except the writing. I can't even remember why? Nicole Sachs calls the journaling 'journal speak' and it involves writing out your thoughts in a particular format for 20 minutes at least 1x day and then chucking it away. It becomes both a purge AND a connection to the accumulation of emotion, and particularly, fear in the body. Four days later I had not had any symptoms for four days. Ninety days later I have only had what Nicole Sachs describes as 'human pain'. Human pain cannot be cured, of course, but I can deeply attest that it is nothing like chronic pain. The two are different at their core.
My chronic pain had felt like an intense fear and holding and contracting against feeling the background pain intensify then a collapse of ability to continue to resist resulting in acute intense pain usually for 30 plus hours. After this, a sense of relief from the pain but with exhaustion. Then another period of anxiety and repression until the next bout of pain.
In opposition, I would describe normal human pain as skipping around and thinking about everything except pain and then when pain happens (back 'going out', headache, injury whilst running, food-poisoning) the pain starts, continues and then stops. There is no terror of it starting beforehand. There is no terror of it continuing forever. There is no hypervigilant tracking and asking 'Was it this or was it that or was it the combination of the two? I must know so that I can stop this'. There would only be normal pain for a normal amount of time for a normal cause.
It is hard to explain to someone that has not had chronic pain but anyone with chronic pain will probably agree with me - it is not the pain that you are worried about really - it is the complete and utter loss of your ability to be a useful and valid and connected person in the world around you. I had many things offered to me for pain over the years. I did not want something for the pain. I didn't want pain-killers, I wanted 'chronic-killers'. For me, the work that I started doing around making my nervous system feel safe again was just that. I'm not saying that is was easy in practice but the advice was simple. Every day has become a new day to practice letting go of the fear of the pain.
When I looked back into my old Ayurvedic text books there it was! The 2000 year old description was there under the label of dysregulated nervous system (Vata Dosha) - 'wandering pains'. I had read it a thousand times in the 16 years since my Ayurvedic Studies degree and always imagined it being a description of mild pains that appear in multiple places. But now that I had experienced it it rang clear. Pain that even within it's daily and yearly ebbs and flows is constant and unrelenting but not consistent. Sometimes my migraine would start in my neck and move upwards. Sometimes it would stab me in the eyes for hours and then move to my ears and around to the other side. Sometimes it would start on the left instead of the right. Sometimes I couldn't breathe for diaphragm pain and then, bam, the migraine. Sometimes I lay on the floor because I couldn't make it to the bed. Sometimes I went out for a walk to try to breathe it away. Sometimes the vomiting was so violent it would scare me. Other times I would eat something and it would ease. I could have terrible tooth pain or agonising shoulder pain depending on the day. Sometimes I would get euphoria with tons of energy and then the pain would start but, conversely, sometimes with terrible sadness and bouts of crying and then the pain. The inconsistencies and the randomness made me feel chaotic and as if I was chasing a smarter adversary than me.
As I looked over my Ayurveda notations further and with a clear head I found more and more. In notes from an Ayurvedic and Western doctor lecturing on stress and symptoms of stress I found the words 'journaling about your emotions for 20 minutes each day' given as part of the package of treatment along with all the traditional Ayurvedic recommendations for looking after the mind, brain and nervous system and it spurred me forwards.
I am now looking deeply into the Ayurvedic and Yoga notes that I have and I am putting together an Ayurvedic and Yoga Journaling practice for stress symptoms and chronic (neuroplastic pain) with a view to put together a larger package of information that could help me get better and better and help other people too.
I'll update again soon.
PS As a side note - I know a lot of women my age will look at the list above and diagnose these symptoms as menopausal. I had been given two types of HRT. The second one, bio-identical hormones I had been on for years without long-term relief of any of the symptoms above and I had treated myself with all the recommendations for balancing hormones with no results. The story of my coming off the HRT is for another blog.