I don’t have an ‘off’ switch for this!
So this is my stroy fellow migrainer, one that will probably ring true with many who read it. I apologise if I ramble, I have held this in for so long now that popping the lid open even a crack may cause a flood.
Like so many migraine runs in my family as in EVERY female member of the last 5 generations have suffered, for each of us they began around puberty and progressed from there. I was 13 when i got my first, I remember most of it so clearly, a queasy dizzy feeling then lights so bright I felt like I was going blind, a coldness seeping into my bones as my head began to burn. I knew from my mum and nanna that my turn had come and this was the beginning of my affair with migraine. I managed to make it thru the rest of the school day but the pain began on the way home, a pain like nothing I had ever felt before, my memory is hazy after this as the pain took over. I know from my friend that she practically carried me from some point but I dont remember, I flash of sitting on the sofa and trying to figure out how I got there then nothing until about 9pm when I heard my mum putting my brothers to bed. She had put me in bed with an icepack and fed me some pills to try and ease the pain. Next I knew it was morning, the pain had passed and apart from it seeming overly bright outside and an dull ache in my neck I felt like myself again.
After that they came every couple of months gradually lasting longer and longer. At 16 I decided enough was enough and saw my GP, he knew the family history as he had treated my mum and sister for migraine, placing me on abortive meds and told me to come back if they got worse. Over the next 10 years they got more frequent but so slowly I barely noticed, I just trained myself to cope with them trying pill after pill of abortives, non working for more than a few months. A migraine journal revealed there was no 1 thing we could put our finger on as a trigger.
When I was 25 my mum suffered from a constant migraine for 2 months, she lived in silent gloom, TV barely audiable if turned on at all and heavy curtains throughout the house. I felt so sorry for her knowing her pain and that there was nothing I could do. When it finally let go of it’s death grip it took weeks for her to get back to herself but I can now admit I was kind of glad it wasn’t me. Her headaches tapered off after that like it had exhausted itself from the effort of hanging round so long.
As mums eased off to once every 6 months mine became weekly, then twice a week. I tried to keep going and have a normal life, work friends, shopping or just taking the kids to the park but the persistent pain every couple of days was draining me. I tried several preventatives with little or no affect along with dietary changes and a structured routine so as not to push myself too far. Still it persisted, I lost 3 jobs in 2 years because of the amount of time my migraine caused me to have to take off.
I could always spot the signs that my head was going to be bad and slowed my pace whenever I felt the nausea or dizziness beginning, I truly believed these migraines were because I was so active and just spreading myself too thin. I had a wonderful lull for about a year where i managed to get my life back on track and found a job I adored, I honestly couldn’t wait to get to work each day. 3 months in I was sat at my desk on the afternoon of March 7th 2011 and it hit (This date will be forever burned into my memory), I felt like someone had tried to knock my head off with a sledgehammer. There were no warnings nothing just WHAM “remember me”. A terrible thirst hit me and as I went toward the breakroom I just crumbled to the floor. I hadn’t fainted but every muscle was screaming like I’d run a 10k marathon. I was shipped home in a taxi and told to take a couple of days.
To my horror a couple of days became a couple of weeks with no relief or let up from the pain, I lived on the sofa curtains closed TV turned down, my own silent gloom. The doctor decided the best plan of attack was to place me on Tramadol and a triptan, the Tramadol was fantastic, I still had to wear sunglasses outside ands in work but at least I could go to work part of the week. The Triptans did nothing but magnify every syptom. My boyfriend as a non sufferer became increasingly aggitated by the lack of progress and accused me of playing on it or making it up, I’m still waiting for him to realise that the majority of symptoms cannot be faked.
In the space of 6 months, I had lost my job, been refused benefits and lost my home because it was decided this had all been done intentionally. I was at rock bottom my life was nothing more than rubble and dust and the only people who believed me were my family and GP. Finally I had my appointment for the neurologist in September and my pain was given a name, Chronic Daily Migraine, validation of what I was going thru was mine, it was no longer “all in my head” (lol) it was a really real thing something I could read up on and explain to people only. My doctor had me on the Tramadol for the past 6 months because I had tried everything else over the previuos years, for the most part it was an amazing help even if it wasn’t working as well as it had in the beginning. The neurologist dealt another blow to my already depleted self-esteem by informing me, My GP however noble their intentions had made things worse, I was a Tramadol ‘junkie’, it was explained to me that Tramadol is only 1 or 2 below Morphine on the pain med’s scale and can be dangerous if taken for more than 3 month, not only because its addictive but it can also damage the digestive system. Thanks Doc like I don’t have enough to deal with! I was given a month to get off them and see if my migraine had acctually gone and been replaced by a Medication Overuse Headache, I did it in a week I’d suffered too long already I needed to know now.
To my dismay there was no change for the better, just worse I was allowed 1 dose of Paracetamol a day to allow my system to cleanse itself. I could barely function some days, Topiramate was prescribed but I couldn’t tollerate more than 25mg a day, trying to go higher made me vomit constantly increasing the pain in my head from the constant strain. I tried Gabapentin for over a year, another failiure, I began losing my hair and taking more than 300mg 3 times daily caused blackouts and temporary paralysis down my left side when my pain was bad. My family were so concerned they worked out a rota between my brothers so there was always someone with me.
I became so depressed I’d lost my independence, I just wanted the next attack to finnish me off. I needed someone to talk to, someone who understood, a fellow sufferer. Trolling the internet I found migraine.com, just reading others stories helped me to gain a better knowledge of my options possible treatments and remedies. There were stories to make me laugh and cry, giving me a small sense of self worth and hope.
By the summer my attacks were 3-4 days long at an 8-9 dulling to a 6 for a day or 2 before another would hit, and once again vomiting constantly. I hadn’t seen my neurologist since Christmas and I told him I wanted off the Gabapentin they were useless. After some frustrating discussion we reached a truce, he would set up a week in hopital to give me a DHE infusion and I would try to increase the pills again. The DHE made me so sick the 1st 3 days I had to have an infusion of the anti-sickness they give to Chemo patients before every DHE. It was so upsetting why did everything have to make me so sick?
While in hospital my only comfort were the other women from the next ward, all at once I wasn’t alone in my pain these women had had this exact same thing! They had managed to find some relief, they helped me to see things more positively.
After my week was up and my charts studied the doctor and neurologist came to see me decided that I might benefit from a nerve block, when the doctor disappeared to get what was needed I decided this was a good time to discuss my other options if the DHE didn’t work. His response was so casual and shocking “Well there isn’t much else we can do for you” was like handing me a death sentence. The nerve block was amazing the 1st real relief i had in a year, the down side was that it lasted only 4 hours, the pain came back worse than ever but it had moved from the side of my head to above my eyes and cheekbones increasing my light sesitivity, on the plus side within a couple of weeks the vomiting had stopped almost completely.
Since then I have finally come off the Gabapentin after another failed attempt at increasing them, have a new med’s regime in the works, even got put on the Botox waiting list. It’s amazing what asking for a second opinion can do, suddenly I have a list of options.
Throughout it all my family have been amazing especially my kids. I know I probably wouldn’t be here now if I had not been blessed with them, they are so loving helpful and considerate, they understand my limitations when things are bad, I know all parents say this but they are my angels and my world.