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The shocking truth about migraine.

The shocking truth about migraine.

This is a piece about my personal experience of migraine in order to raise awareness for the Migraine Trust.

The 18th May 2006 will go on record as the worst day of my life. I woke up and had no feeling in my right-hand side, from my face down to my right leg; I could hardly stand up and my right arm felt like it was hanging off me. I realised after a few moments that I’d lost muscle control in my mouth and could not talk or swallow. Somehow I got to casualty and they whisked me straight through.  I could instantly tell that the Doctor thought I’d had a stroke; I also thought I’d had a stroke and when they asked me, “Do you usually talk like this?”, “Do you usually hold your head like that?” I was unable to reply other than in unintelligible mumbles.

One month earlier I had been in a minor car crash with major consequences, in that I hadn’t known I’d had concussion, and had completed a full day’s work on the day of the crash, even though my car had been damaged enough to be towed away.   It was two weeks later, when I couldn’t stand up with dizziness that I was told that I’d had concussion, was given some anti-inflammatories and painkillers and told to get ‘complete rest’.

So here I was, in hospital.  They gave me a CAT scan and for four hours I lay on a trolley in casualty thinking the worst: I’d had a stroke and my life would never be the same again.

All the things I’d wished for and my hopes and aspirations for the future would never happen.  It was a terrifying and awful time and I felt very alone. The realisation that you can’t use your right leg and arm and no one can understand what you are saying, maybe forever, is devastating. Finally, the Doctor came and spoke to me, as he was talking I realised that my speech had started to return, as had some of the feeling in my right-hand side – I now had a bizarre mix of pain, numbness and pins and needles. He said he “wasn’t sure what was going on, but I hadn’t had a stroke, nor was I in immediate danger of having a stroke, but I needed to see a neurologist”.

I went home, emotional, confused and staggering around like I was drunk.  Although my speech had returned to some extent, I was unable to articulate very well, I was slurring my words and my brain did not appear to want to communicate with my mouth – my mind would say one thing and my mouth would speak differently.

Five years on and I now know that was a basilar migraine attack.(International Headache Society – information on Basilar Migraine) In 2011 I had over 100 basilar attacks, although thankfully none have been as severe as that first one. My attacks now are likely to consist of losing the feeling in my right-hand side followed by the mix of numbness, pins and needles and pain, throbbing pains in my head, slurring of speech, giving the appearance of being drunk, a decreased level of consciousness, nausea and dizziness. The main part of the attack lasts 4-6 hours but the dizziness can last for 8 hours and the numbness may linger for days. After every attack I go into the ‘hangover’ or ‘jet lag’ stage, where I’m usually unable to function as I would wish. In addition to the basilar attacks, I live with a permanent migraine which is now on a low level and I have pressure pains in my head. My concentration and my short-term memory are both poor.

I also have balancing problems and every basilar attack affects my balance and I’ll usually stumble or fall. Working on your balance is a nightmare – the exercises you have to do basically disturb your balance and make you feel sick, with the hope that you are training your brain to recalibrate properly. I’ve a long list of balancing exercises to do but as they make me far worse, (they trigger the most awful vertigo), I find myself having to make a clear plan to do the exercises rather than as and when I feel like it. Every day I stay in bed my balance decreases by 10%, so a prolonged migraine attack can affect me in more ways than one.

Everything seems to be a trigger:- caffeine, chocolate (although I’ve conducted a risk assessment – Bounty Bars are safe – they really are ‘A Taste of Paradise’), cheese, too much citrus, alcohol, processed foods, tiredness, lack of sleep, loud music, flashing lights, the cinema, too much TV, too much fun. Yes, even going out and just having ‘fun’ can be a trigger… It’s like if I do too much of anything my brain ‘shuts down’.  The trick is to balance my days and activities. My diary is planned to manage my migraine and I rarely do anything on two consecutive days and if I go somewhere I am usually the first to leave. I avoid my triggers as much as possible and have a huge list of other foods which might also be potential triggers – I’m currently working my way through them.

The treatment I get for my migraine is a Greater Occipital Nerve block (GON) into the area I refer to as ‘my bruise’. This is the place where I must have hit my head in the car crash – five years on and I still have a huge bump on the back of my head.  I call the GON my ‘Frankenstein Injection’ as it feels like you are getting a power pack or an upgrade.  At a recent consultation (with Dr Anish Bahra at the National Hospital for Neurology and Neurosurgery in London) it was recommended that I get bi-lateral blocks to see if this helps with the migraine aura and then to try Flurnarazine.  I have never got on at all well with any of the recommended medicines, – Propanonal, Amitriptyline, Nortriptyline, Topiramate – which is why the GON was initially given.
The injections have made a huge difference to the level of pain; previously I would have a pain level of 6-8 almost every day, now the pain level is usually 1-3, but nothing has helped with the aura. I have Maxalt Rizatriptan for the most severe attacks, which I use maybe once a month.

My life is almost unrecognisable from how it was before – I used to have a very busy day job as a Sales Manager, juggling lots of projects, going out all day and meeting clients and I had my own small business too.  Now I work part-time from home running my business and planning my working days around my attacks.  I used to be so reliable but now my friends and family – all of whom are positively brilliant – know that I may cancel things at the last minute.  I miss about 70% of things that I wish I could attend.  On the MIDAS  – headache scale I score 76 out of 78 points. Midas Headache Score – Migraine Disability Assessment Score

One thing that I have heard conflicting opinions of, is how much of a stroke risk is a basilar attack?  I’ve had one consultant tell me that the only way of knowing whether it is a migraine or a stroke is ‘if I get better’ and another tells me that my stroke risk is nominal.  I also wish I knew how to cure the ‘hangover stage’ quickly – sometimes this can feel worse than the attack itself.

 

As to my future, no matter what labels are given by the hospital, I always believe I will get better and I will WIN this.  I may modify things in my life but I refuse to give up. I’m trying to cycle again as part of the balancing exercises. My dream is to be well enough to cycle the C2C – 140 miles from Whitehaven to Tynemouth. When I do this you’ll be the first to know. [Update:  I’m so excited to be cycling the C2C in May 2018 – you can sponsor me here http://uk.virginmoneygiving.com/suzannecollier ]

Life deals you a hand of cards; this may not be the hand you want but you need to play them as best you can. I like to think I’m doing that.

If you’d like to know more about the work of the Migraine Trust or make a donation please visit http://www.migrainetrust.org/

If you work in the book industry and would like to make a charitable donation, BTBS The Book Trade Charity would be grateful for your support:  http://www.btbs.org/ © Suzanne Collier 2012.  All Rights Reserved.

7 thoughts on “The shocking truth about migraine.

  1. Anne-Marie Griffin

    Dear Suzanne

    Thanks so much for sharing your experiences and journey with basilar migraine. It is reassuring to me as a fellow basilar migraineur (of 30 years) that I am not alone in having this dreadful illness and how difficult it is to manage without considerable lifestyle changes and the right care.

    The changes and choices you have made since becoming unwell make me feel as if I now have permission (and feel less guilty) to make similar changes, that I am justified after years of feeling so unwell, of struggling to carry on as usual and perpetuating a damaging cycle of chronic migraines that have rendered me disabled for now.That’s why it’s so important that you’ve shared your story, it really does help others.

    I think you will get better and experience migraine free periods in the future. From my personal experience basilar migraine has a life cycle – it’s a mysterious one but they do seem to come and go in cycles throughout life.

    Wishing you strength for the bad days and lots of happiness for the good days.

    Annie

  2. Suzanne

    Dear Annie, thank you so much for your comment. I’m sorry to hear of your 30 year experience – it makes me a relative ‘newbie’ at almost six years! This was one of the reasons why I decided to share such personal information – that I wanted to help others in the same boat. You too have helped me, with your comment about ‘basilar migraine having a life cycle’; you’ve reinforced my belief that I will get better and I would like to thank you for that. I really hope now you will give yourself permission to make dramatic changes to your lifestyle and learn to live alongside your migraine, instead of having it dominate your life. With much love. Suzanne

  3. Jo

    Thank you so much for writing the article. I have been suffering with migraines for 20 years (since I was 5), but four years ago, I experienced a life changing migraine; mirroring what you have written; I too thought I had had a stroke, and was terrified that my life was over at 21. I have not felt the same since. Migraine’s are common in my family, but no one has the symptoms I have; the loss of vision and inability to speak scares me everytime as I wonder when I will return to ‘normal’.

    Unfortunately my Dr is not at all understanding, and simply calls them ‘bad headaches’. I have sought answers and support but have found little. Reading this article has given me hope that I can get some support, and that I’m not the only one that experiences these debilitating migraines, but most of all it has given me a name for them – a simple ‘migraine’ has never felt like it covers what I go through. I am going to take your article to my Drs and demand better treatment and support!

    I do hope you have better, less pain filled days to come. Thank you again

  4. L. Marie

    Besides the pain, the worst part of migraines are having to cancel activities because of an attack and not having too much fun. I have grown accustomed to avoid chocolate, too much caffeine, processed foods and the long list of foods to avoid. However, I will never grow used to missing life events.

    “It’s like if I do too much of anything my brain ‘shuts down’. The trick is to balance my days and activities.” Well said.

  5. Mishelle

    Thank you so much for sharing you’re story with everyone. Migraines have been overlooked for far too long. I have been a migraine sufferer for about 13 years now and I am now 24. They have taken such a toll on my life. I was not able to finish high school and I can’t work because of them, i cant eat and if i can i usually throw up and am unable too keep food down. i cant fall asleep because of the pain and am unable to get out of bed most days. The curtains in my house are always closed and all lights off. I have lost friends because of this horrible illness. I guess they don’t seem to understand what I’m actually going through and think I just need to ” suck it up” and think I’m over exaggerating. I have been to the emergency, worked with neurologists, and seen many doctors who either don’t know what’s going on or think I just want pain killers and have a “very expensive habit”
    I miss out on many fun things because I stay locked in my dark house 24/7. Most days I can’t even watch a nice movie or t.v show because the light and sound is excruciating. The thing that gets to me the most about all of this is that I have a one year old son who I care for at home while my husband works. I feel like a terrible mother because I’ll wake up in the morning with my son screaming and pulling at my hair trying to get me to wake up and feed him and play with him and some days I just physically can’t. I’ll be lying on the bathroom floor puking and twitching in the dark while my poor little baby needs me.
    I am migraine free for maybe 1 day of the month or maybe for a few hours of the day and I am unable to fully enjoy the true bliss of no head pain because my body and brain is so exhausted and I can hardly move.
    On the plus side i have been making a few changes to my diet and starting yoga and have not thrown up for one month and i have been able to open the blinds a few times and let the beautiful sunshine in! ( also being able to look at this computer screen for this long is a huge step!!) still a lot of migraines but slowly getting somewhere. It’s comforting to know that I’m not alone in this and really appreciate you putting out the awareness for migraines and I hope I can one day be well enough to contribute more 🙂

    1. admin

      Hi Mishelle, thank you for taking the time to post on here. It is good to hear you are doing Yoga and feeling some positive benefits – I am trying to up my exercise levels at the moment and regulate my blood sugar, and it is amazing how many triggers I have found and eliminated; bananas, plums, avocados, fresh bread. Keep up your spirits and don’t give up hope of a full recovery. Suzanne x

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