There IS hope!
Last updated: October 2020
My rocky relationship with migraines started in August 2007. I was out at a nite club one night and a fight broke out behind me (2 people I didn't know). One guy punched the other, the guy who was punched fell back, his head hit my head, I was thrown off the dancefloor and ended up in the emergency room with my head pumping blood. I have had post traumatic chronic daily migraine and headache ever since.
The diagnosis didn't come until a few years later. At first, I was put on Ponstan painkillers for a few months. My arms went numb each time I took them but my migraine didn't subside. I told my GP and he said to keep taking them, they'd "kick in eventually". I switched to a new GP after this, it didn't sound right to me.
When I returned to work, I had three blackouts in one day and was brought to the emergency room again. This time I had a CT scan but it turned up normal.
I started going to a chiropractor for a while because the accident had also caused an injury to my back. He believed my head pain was linked to my back. Each week I would get some relief but it was small and the pain would always become more and more severe as the week went on before my next session.
I gave up on that and started doing physiotherapy sessions along with acupuncture at my university. My first acupuncture session brought me my first migraine and headache free evening in a year. It was bliss. However, subsequent visits did not have the same effect so I ended up stopping treatment.
It wasn't until I started working in 2010 that I decided to go to see a neurologist, on advice from my manager. It was the best advice I've ever been given. After a brain MRI, the neurologist diagnosed chronic daily migraine and put me on a preventative called Amitriptyline, a tricyclic antidepressant used in small doses for pain. I was prescribed 5mg to be taken at night.
The day after my first night taking Amitriptyline was a blur, I went into work and stared blankly at the screen most of the day struggling to make sense of anything (not good being a software developer where a key part of my job is thinking and figuring things out). However the day after that my head was a lot clearer and by the 3rd day I felt normal again. It showed me the bad side effects medication can have. But the good thing was the migraine and headache had greatly eased. They hadn't gone but they were reduced significantly.
For the next few years I went through a cycle of feeling relatively well for months, then the migraines would start worsening and worsening and I would go back to my GP. He would increase my dose of amitriptyline and I would feel relatively well again. The pain never fully went away but it was so lessened that I was happy.
They started getting worse so I started attending acupuncture again. I went for months but only got slight relief. I was put on a triptan called Frovex to take at the start of a migraine attack but it had no effect for me because there is really no beginning or end to chronic daily migraine - as the word "chronic" means, it's ongoing. During this time I would take Migraleve or Solpadeine to alleviate symptoms.
About a year and a half ago, when I was up to a dosage of 60mg (12 times my original dosage), the migraines came back fast and furious and I was also noticing a range of cognitive symptoms; not being able to concentrate at work, extreme forgetfulness, brain fog, for example.
The pain was so severe. Stabbing pains in my eyes, varying severity. Eyes felt like they were being squeezed. Sharp stab-like pains through my head like a knife is cutting through it. Squeezing of my entire head. Sometimes the opposite - like my brain was pushing out against my skull. Throbbing pain on either side of my head. Dizziness. Insane nausea. Hypersensitivity to light and sound. Occasional vomiting.
It was way worse than I'd ever remembered. I became a shell of myself, constantly worried about work and needing to take time off, going in late (which thankfully my work were very flexible about but it didn't stop the worry), etc. I became increasingly worried that I would have to give up my job as they were so severe I knew I couldn't go on as I was going.
I began a regiment of setting an alarm at 6 in the morning to take either tramadol or codeine based painkillers in the hope that the pain would subside by the time I had to go to work. Recipe for disaster. I luckily did not become addicted to either, but can easily see how it could happen. I also started experimenting with essential oils (rosemary, peppermint, ginger, clove) and Tiger Balm, and I do believe they helped, but not enough. I even resorted to visiting a healer guy who ended up doing a thing called the "Graston technique" where he smothered my back in Vaseline and baby oil and rubbed weird metal plates over my back. He also did cupping. It was a very weird session and I chose not to go back, nor did it help.
I asked my GP to refer me to a neurologist. Again, another neurologist visit changed my life! Firstly I decided to do all my due diligence and go for an eye test and put together documents describing my history and symptoms. The eye test was one of the scariest situations I've ever been in. They found bad peripheral vision in my right eye and because I'd been presenting with migraine they said I needed to go straight to the emergency room, not even to wait until the next day. Convinced I had a brain tumor, I went to the hospital. I kind of started wishing I HAD a brain tumor because in my mind "they can just take it out and I'll be free of this pain"! Your mind does funny things when you're in insufferable pain. The doctor told me it was just a migraine and to go home, unless I wanted to be treated for my current migraine.
So, I had my neurologist appointment. He wanted to send me for an MRI scan because of the eye test results, but again it came back normal. A few weeks later I saw him again. He informed me that the dose of Amitriptyline I was on was far too much for my body and reckoned that all my cognitive symptoms were actually a side effect of the medication, not symptoms of migraine. He told me to come off that medication cold turkey, and start a new medication called Sibelium (known as Flunarizine in some countries).
The next 3 weeks were three of the most horrible weeks I've ever experienced. My body had become so dependant on Amitriptyline that I suffered severe withdrawal symptoms. I had to take 3 weeks off work. I spent most of these 3 weeks in bed, either shivering or sweating. I developed a chest infection, throat infection, gum abscess, sinus infection and 2 ear infections. I started seeing things in the dark and getting really really paranoid at night. I had really bad migraines. My GP was furious that I had been told to come off it cold turkey, however looking it up online the withdrawal symptoms seem just as bad when weaned off it slowly so maybe it was best to get it all over with quicker.
Then, 3 weeks later I just woke up symptom free! Infections had run their course. No more withdrawal symptoms. And best of all, the migraine symptoms were REALLY MINIMAL. The Sibelium had started kicking in! And there were no side effects, unlike Amitriptyline.
And now for my happy ending! After about 6 months the migraines started getting worse again so I went back to the neurologist. This time he went through the current medications and noticed I was on Neoclarityn (for sinus problems). He looked up the side effects and saw "nausea, dizziness, headache" and recommended I come off it completely. I did. 2 days later I woke up MIGRAINE FREE for the first time in TEN YEARS! I now only get monthly hormonal migraines which can last anywhere from 3 hours to 3 days. This is BLISS compared to how life was before. I get the odd symptom in between but am mostly migraine free with that monthly exception. So, the combination of Sibelium along with stopping the Neoclarityn has absolutely changed my life.
My 3 best bits of advice for people suffering with migraine:
1. If natural remedies and techniques aren't working, see a neurologist and discuss potential medications
2. Take a look at the side effects of any medications you're on as they could be making you worse
3. Try not to lose hope. I felt hopeless for so long and look where I am now :-)
Are the family and friends you will be seeing this holiday season understanding about migraine?