Get out of my head
Let’s talk about heads. Not something you can run away from really and when the feeling of that first migraine pops by…well if you know you know and we’re guessing if you are reading this then you, or someone you know suffers. Well we get it and really hope this blog can help even if it’s just a teeny bit. For this blog we have teamed up with the lovely Chops @daniellep where we shall share our journeys with you on the head ruler that crossed the line and impacted all of our life’s…but we are not women easily defeated…
Lets take a look back in time, when did the Migraine Demon first appear?
Danielle – My migraine journey started 8 weeks after the birth of my daughter 29 years ago. I’d had headaches for many years before that but this was the first time that I’d been truly crippled with agony along with sickness and diarrhoea. Laid up in bed for over 24 hours not being able to look after my children and having to rely on my husband and parents to take over. It then took me days to recover fully which I now know is called the Postdrome stage where you feel very washed out and fatigued but can also often feel euphoric which definitely happens to me. So, this became the pattern of my life, regular all-encompassing pain so debilitating that I wasn’t capable of doing anything, other than laying in a dark room with a bowl and occasionally crawling to the toilet.
Sam – It actually began while I was pregnant with my first child…I had them constantly. I took it as one of those symptoms that I would have to deal with while pregnant. I would go to bed with a headache and wake up with the headache. I was experiencing a ratio of 90% headaches to 10% clear days out of a typical month. It was getting too much to bare, especially with having young children and dealing with life in general
Keeley – I am late to the party with the whole migraines and mine started after a period of illness about 5 years ago. Anyone that knows me will tell you that I have another battle with ‘rest’ and it kinda takes feeling really poorly for me to slow down, on this occasion I didn’t and an infection that had gone untreated went to my brain, I was never quite the same after and now it seems that my body choses migraines as its way to tell me ‘enough’ ( I still try and rebel though much to the annoyance of my hubs). I have been known to call Sam on many occasions on my way home from work with lost vision in one eye, and if anyone has experienced this they will know how frightening they can be and have lost endless days/weekends with headaches that go on for days, going to bed with one and waking with one. It makes you snappy, irritable and bloody fed up!
So, now you know when they started, does this relate to your own journey or is yours completely different, the big question is, what tools did we use to fight the migraine demons…
Sam – I kept a diary of when I had them to what foods I was eating, went to doctors, specialists, tried medication, MRI scans, eyes tested, acupuncture, travel sick bands, everything you can think off, I was trying it. Just to point out my headaches are tension headaches and not migraines. Paracetamols and ibuprofen became my enemy as I was abusing them and they were in turn abusing me and making my headaches worse.
I even had an emergency lumbar puncture due to a thunderclap headache that can be life-threatening. I can’t express how much my head was affecting me, it was changing what I did and who I was.
Danielle – About 20 years ago I started on Triptan drugs which were life changing, I still got migraines but the triptans stopped it in’s tracks and I could carry on living, albeit not feeling great but able to function. Fast forward to a couple of years ago and I entered into a chronic phase where I was in pain most day’s and actually ended up having a disciplinary hearing at work as a result of my sickness, which then resulted in me having to reduce my hours from 4 days a week to 3 so it’s had a financial impact too. This chronic phase resulted in me finally being referred to a neurologist specialising in migraine and a plan was put in place. I tried many prescribed preventatives but was put on a new one, and had to take a high dose of Magnesium and Vitamin B12. I also had to keep a pain diary every single day (I still do) and take it with me to track progress. It was explained that this chronic phase was probably caused by a hormone surge which we experience every few years
Keeley – After a spell in hospital I too had a lumbar puncture and various MRI’s and although I have a penal cyst (apparently this is very common in women) on my brain there was no other stand out reason for this to be happening. I was place on amitriptyline for a period of time, that just made me emotionally numb, very out of character for me and I stopped taking them. I over used paracetamol and after another visit to the hospital I was told that they were actually making them worse. So, packed full of vitamins I found that this mixed with white ointment really did help when the migraine demon decided to stop by. I also kept a diary and found they were always happening just after my period finished, now I have planned to visit the doctors about this but…well let’s just say it’s on my list!
A change in direction has happened for all of us , but what has that looked like for us all and has it made a difference?
Sam – Well you’re going to laugh as it was down to my Dad and his dog, when I first told Keeley about this, she had to ask me to repeat a few times. My Dad had been taking the dog to a Chiropractor and told me about her reputation and recommended (I would also like to point out that she does humans too). I had to give it ago. So, I went with my Dad (I went first, then the dog…. you can get why Keeley found this so amusing)The Chiropractor went through my medical history, headaches and then she looked at my body. We’ll all I can say is that this lady joined the dots…a eureka moment. The logic of what she was saying and doing was amazing and for me it was my body that was causing my tension headaches. The visits to the Chiropractor has change my ratio around, I now suffer 10% headaches and 90% clear days. Sounds corny but she has changed my life. The 10% headaches that remained was mainly down to hormones/the time of the month…
Then came the Daith piercing (Keeley’s idea to get the piecing and I am up for trying anything to help prevent headaches)…. I’ll let Keeley fill you in, let’s just say there were screams that day, mine not Keeley’s she’s crazy!
Danielle – I also had a blood test to see if I was entering the menopause, which I wasn’t. At the same time, I read a fascinating piece written by someone on my migraine support group that talked about research into plastics and chemicals within those plastics that can affect our hormones and therefore if your migraines are hormone driven then it was worth trying to reduce plastic packaging as much as possible. It had had a profound effect on this lady’s migraines so I was really keen to try this. I replaced all our Tupperware, stopped using cling film, and now use glass, ceramic wood or enamel. I also switched to as much unprocessed organic produce as I could, even down to sanitary products and hair dye which I’m too vain to stop using! It made complete sense to me to try and eradicate as many chemicals add additives as possible and it’s become a way of life that I love and would never change, although I won’t lie, it’s been very expensive!
I was finally offered Medical Botox after jumping through several hoops, i.e.: trying new medication, trying to reduce my triptan use (overuse can cause more pain) having acupuncture and keeping the pain diary. The Botox helps about a third of patient’s, while a third will get worse and a third will see no change, the other third will see an improvement, it’s not a cure it’s just designed to break that chronic cycle and get you back to a periodic cycle, and for me it seems to have achieved this. I’m no longer in a chronic phase, and most of my headaches now will be around my period, and I have different medication to help control that. So, without going on any more about it (which I could!!) that is my migraine story. I’m in a much better place now thank god, and migraines are no longer ruining my life.
Keeley – I am STILL chuckling about that Daith piercing moment…. when the screams happened instead of being a supportive friend I LAUGHED…. ALOT! Anyway, I find that I wear my glasses more and the Daith piercing has most definitely helped. I won’t say that they have totally fucked off, but it’s been around 8 weeks now since I last had a debilitating one so I’m taking that as a big FAT win!
Sam – I wont lie it bloody hurt having the piecing but I have had the same results as Keeley. We also winning at twinning with identical piecing’s.
Huge thanks by the way has to go to Tracey @approved.us who first pointed out the benefit of this piercing. Tracey, we love you!
We have shared our stories and honestly feel free to share yours too but, let’s finish off with a little advice, after all there is no advice better than those with experience and between us it seems we have tried it all.
Danielle – My advice if you are suffering is to keep a pain diary so you can see if there is a pattern and to take this to your GP, and keep pushing if you don’t feel you are getting the right support. I saw a different GP at my surgery who was also a migraine sufferer and he was the one that pushed things forward for me. The migraine support group on Facebook that I joined a couple of years ago has been a real lifeline for me at times and The Migraine trust has some really helpful advice too.
Sam – I would definitely agree with Danielle, keep a pain diary and don’t knock back the off the shelf pills they are more likely to make your headaches worse. Your body is amazing so start working with it and listening to it and try alternative therapies as one might work for you.
Keeley – Totally agree, I hadn’t thought for one second that mine could be hormonal and stress related, but that is absolutely my trigger, so I know when that feeling starts that I need to make some mall changes, food has been a big one for me, sounds silly but cutting down on sugar has made a big difference I can always tell if I have had too much as my head tells me so, and I totally agree with Sam, don’t knock back off the shelf pills!
So there it is, heads covered. As always let us know what you think, we are interested in so many things that this blog was started to see if they were things that resonated with you too, so if you have a burning question let us know and we’ll write about it.
Many thanks to the loveliest lovely chops @daniellep for agreeing to share her story and also to @jessicat_piercing for being super patient. If you are midlands based and want a piercing we can highly recommend them
Keeley and Sam