Life Long Migraines

As always, the beginning is the easiest place to start…I had what was known as Abdominal Migraines when I was a toddler. From approximately age 3-7 I go from a perfectly comfortable, playful toddler, to a violently ill, vomiting uncontrollably headache sufferer. It took my Mom fighting for her child, multiple doctors believing she had munchausens before a pediatric neurologist diagnosed me. I apparently just grew out of that.

I don’t recall any other headache moments outside of getting my braces on in grade 7 and having absolutely horrific headaches, all to me and my family, associated with my braces and adjustments. When I was 11 I started swimming competitively, every 2 hour practice in the pool with a latex cap on my head, I would get tension headaches that my wonderful coach would be able to relieve by using pressure points at the base of my skull and a lot of pressure. I swam through to university, acknowledging my swimming headaches as being related to the tension in my neck, my shoulders, and generally just having a warm head from my cap. I recall a particularly horrible facial pain/headache when I was in need of a root canal on my front tooth when I was in grade 9, had never quite known pain like that. Headaches on and off with my period of course, but nothing crippling by any means. It wasn’t until I was in grade 11 that my pain threshold was tested and the life I am currently still living in began. It was just an ordinary day in grade 11 when I got a horrible headache with no resolve, no effect from advil/tylenol, the normal tried and true. To this day, I am 28 years old as I am writing this, I have yet to have a single day headache free. This is over 10 years going to sleep with a migraine and waking up with one. My pain has grown in intensity over the past decade; primarily on the left side of my head, sitting often in my sinuses, behind my eyes, I have the ‘ice pick’ pain often, shooting pain through my eyes to the base of my skull, my migraines have been migrating into my jaw the past few years making chewing of hard foods difficult at the time, my ears have been plugging up (as if going down on a roller coaster, or while up in a plane) during daily migraines, I am in at least 7/10 pain everyday of my life. I have auras from time to time with no real reasoning, they never come prior to a horrible migraine, they just show up during one or after, or whenever. I have seen 3 neurologists, 2x CTs, an MRI, have tried every triptan – take as needed migraine medication, beta blockers, calcium channel blockers, anti depressants, anti seizure meds, pain receptor meds (pregabalin), I have been treated once in hospital with their migraine protocol including: maxeran, benadryl, toradol, solumedrol, valium, tylenol, IV fluid and demerol. I have received botox, have had an occipital nerve block, tried chinese cupping, massage therapy, accupuncture, oseopathic treatment, chiropractor treatment, homeopathetic treatments and not a single thing has ever worked.

I work in health care, I am an emergency RN and I recognize how crazy I sound to say out loud, “I had a migraine in grade 11 and I have yet to have a day without pain since.” But this is my reality. My most recent MRI, done at my request, showed a 19mm-17mm-18mm benign bony leison/cyst sitting on the left side of my skull on the anterior cranial fossa (if I remember correctly), and I have been repeatedly told by my then current neurologist, my most recent neurologist, 2x anesthetist – responsible for the occipital nerve bock and family doctor alike, that is of no consequence. I have looked at this report and it appears that I have at least had this cyst/leison since 2009, where there was a CT head done and the radiologist had something to compare to.

I am reaching out on this forum as I have reached my threshold it feels. I am outgoing and a happy person. I spend every day I am out in the world, existing in a bubble of horrific pain, I am not myself. I have been pulling back into myself because I cannot tolerate the pain. I exist. That is all. I want to go out and see friends, but I will likely have my pain increase, for no good reason – a food diary/triggers have never been all that relevant, and I will feel the need to lie down, so I come home. Don’t get me wrong, I force through the pain just about everyday, mostly based on necessity and the ‘screw it’ attitude I have, because I refuse to let my pain win everyday. My only reprieve is sleep, in hopes that when I wake up, it will just be my normal pain, but lessened. I am not asking for a miracle, I am hoping for a normal existence. I grow so tired of being in so much pain that it pains me to even lift my head off the couch/bed/floor. My life is limitless, but my migraines and the pain they are bringing are limiting. I have grown quite depressed with the mantra of, ‘maybe this is just how your life is, this is what you must deal with, live with.’ I find it nauseating to think of another 60 years of this. I will not make it. I think I am truthfully the most disheartened by the lack of give a sh*t all of my doctors have ever shown. I recently had the nerve block done and it has been over 2.5 months since, and I have started having difficulty perceiving the steps as I descend. I have never had any neurological deficits, and I do wear glasses (the prescription however feels fine). I am having that, ‘you think there’s another step but there isn’t’ or the ‘you think you are at the bottom but you’re not’ experience while walking down the stairs, and I’ve almost fallen a few times now. I am looking for anything, support, understanding, a reference to a damn good doctor, at this point anything. I am hopeful for the day I have a physician or health care practitioner in some capacity say to me, even if it is out of pure curiosity: ‘I don’t know what I can do for you, as you have been on everything or tried everything I would normally offer you (this is becoming painful to hear everytime), but in saying that, what you are dealing with every single day is not normal, and I will research and investigate and we’ll see what’s out there for you, we will try anything and everything to try and at least make the slightest dent in your pain.’ I think I would fall over on the spot if I had someone care and dare to follow through with me and this garbage existence I live in. My life is so much greater than this.

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