Migraine is not just a headache

migraineAutumn is usually my best months when I experience the least symptoms. Not this year. The two week migraine ended just before the weekend and I was left in that half zombie state called the postdrome phase. My sleep changed from 2 hours in 24 in 15 minute snatches to sleeping for 10 hours only woken up by external factors and sleeping through joint dislocations. I still couldn’t concentrate and I felt like I had the worst hangover in the world for days.

Last night, another migraine struck. I don’t know why, I don’t know what I did wrong, but there was no warning and no aura which is rare for me. I was fine one minute and in less than five minutes I was curled up in a ball holding my head, rocking back and forth and muttering silly things like “I can’t deal with this level of pain. I can’t do it. Make it stop, make it stop, I’ll do anything to make it stop.”

I  am pretty used to pain. I have carried on conversations whilst putting joints back into place. I have sustained quite a few injuries and have had falls down two flights of stairs that left me with severe bruises across most of my body that didn’t heal for a long time (alongside multiple nasty dislocations and subluxations). I had a C-section without adequate anaesthesia (turns out that quirky lidocaine doesn’t work for me does also apply to epidurals and local anaesthesia used for an emergency C-section) with two dislocated hips and I was perfectly calm, only concerned about our baby who wasn’t doing so well at the time.

This hurt more than any of that. Migraine is often used as an excuse, Kerrie wrote an excellent post last week on that here and most people I meet think that it’s just a headache, that it cannot possibly be a disabling neurological condition. But migraine pain at this level of severity is intolerable, it feels like torture.

Is there anything else I can do? Not that I can think of. I have tried all medication, both acute and preventative, including off-label use, that is available with one of three outcomes. 1. Ineffective, 2. I’ve even tried under medical supervision drugs that are contraindicated due to other health issues, like Propranolol, which did not work out well as it did aggravate, in some cases severely, the conditions it was contraindicated for or 3) the side-effects were severe and numerous whilst the pain relief was limited and the combination of severe daily side-effects and moderate pain was not an improvement over the current situation.

I have tried complementary therapies: acupuncture, reflexology, reiki, massage, osteopathy, homeopathy, aromatherapy, Bach Flower Remedies, hypnotherapy, kinesiology, herbal remedies, chinese medicine and I have tried diets and dietary related therapies. A combination of acupuncture, cranial osteopathy, trigger point and deep tissue massage has worked amazingly well for me at at times where I could afford a weekly appointments, my daily headache was no longer daily and migraine attacks reduced from about 250 days a year to 15-18 days. I’m living on £25 a week, if I spent no money on food, heating or bills, I still couldn’t afford regular treatments. (One of the reasons my Personal Health Budget is so important to me, the first thing I am purchasing from my support plan if I ever manage to get my PHB sorted,  is regular treatment).

I do trigger avoidance as much as is humanly possible. I have attended multiple pain clinics over the years and have spent years in cognitive behavioural therapy focused on pain and fatigue management.

I have requested a referral to my rheumatologist to have another look at my neck issues as I’m pretty sure cervical instability contributes significantly to the attacks, but I am no expert. I have not seen a neurologist in the last 5 years because frankly, I can’t imagine what else could be done as there is no pharmacological route left to explore and even if I could potentially gain access to pain management techniques like acupuncture that has worked for me, pain clinics are very much neglected in the NHS. My husband has been waiting for over a year if not longer for his referral to go through and it still hasn’t.

Last night was again a night of little sleep and a lot of crying. I dug my fingernails into the palm of my hands until they were bleeding and didn’t notice. I threw up until I passed out on the bathroom floor and had to be picked up and carried to bed. Migraine is a big deal. It isn’t just a headache.