https://civilservice.blog.gov.uk/2018/09/04/being-ambitious-and-living-with-an-incurable-condition-migraine/

Being ambitious and living with an incurable condition – migraine

I have suffered from migraines since childhood. Many people are not aware of how debilitating they can be or that there is still no medical cure for this awful condition.

I have worked for governments, the United Nations and leading international think tanks – on the first day that I start a new role I tell my line manager two key things:

  1. I think the greatest quality in a leader is to invite challenge - and I will challenge you!
  2. I suffer from debilitating migraines, on average once a month. If I’m at work it forces me to go home or, if already home, to stay at home.

Symptoms

Migraine trust graphic promoting #Mindful of Migraine

Migraines are medically referred to as ‘attacks’, as the pain quite literally attacks the head, and the rest of the body endures severe pain that can last from a few hours to a few days.

My own symptoms are a desperately intense headache – it feels like someone is banging my head in the same spot with a large hammer – nausea, aura (which means I literally see flashing lights), and sensitivity to light, sound, smell and touch. I have to wear sunglasses, can’t let anyone touch me, as it tingles intensely, can’t eat or drink anything, and when I try there’s severe vomiting. I have to go straight home, lie down in the dark for one or, in rare cases, two days.

It’s really not a pretty sight. For my colleagues, friends and family, seeing me in a migraine is scary, perhaps especially because there is nothing anyone can do to help. I take prescription medication, Triptans, which doesn’t stop the migraine but help to reduce the pain. I emerge from a migraine feeling weak and 1 to 2kg lighter, as I will not have been able to keep food or water down.

Impact on others

How do migraines affect my work and life? A migraine can come on very rapidly, so whatever I have planned for that day – meetings, speeches, writing, meeting friends or family – must be cancelled. The most anyone gets from me in that moment is a one-line text or email: “Got a migraine, sorry, must rest.”

I know this has to be frustrating for my work colleagues, family and friends – but there’s genuinely nothing I can do about it. A common misunderstanding about migraines is that the sufferer can control them – by avoiding what triggers them. It’s true that alcohol, smoking, too much caffeine and some foods, like cheese and citrus fruits, can trigger a migraine. However, I don’t drink or smoke, only have two cups of tea at the same time each day, and avoid all food triggers.

 The triggers

My migraines, like many sufferers’, are genetic. My wonderful late mother sadly suffered them too. (Statistically, women are more likely to suffer than men due to hormonal differences.) My triggers are my monthly menstrual cycle and changes in the environment that cause sensory overload – if I am exposed to big shifts in temperature, light or noise, I will get a migraine.

My only way to try to strengthen myself against these and other triggers is to maintain a routine:

  • drink 3 to 4 litres of water a day;
  • eat well – I can never miss a meal and snack every 1-2 hours;
  • sleep well;
  • avoid too much light by wearing sunglasses;
  • take regular exercise;
  • have monthly head and neck massages and, occasionally, acupuncture at the base of my head.

The irony is that, while migraines stop me in my tracks at least once a month, I am a deeply passionate, positive and gregarious person! I am highly inquisitive, analytical, strategic and ambitious. I have worked in six countries, including two conflict zones, am widely published, sit on the boards of UNESCO, Concern Worldwide and UKRI, am a Fellow at the London School of Economics and University of Manchester, have been a regular on TV, and am currently Deputy on the amazing Race Disparity Audit website!

Inspiring and supportive

I work with an incredibly dynamic and diverse expert team of analysts, digital and policy professionals. We are led by an inspiring and fantastically supportive director, Marcus Bell, who invites challenge, open dialogue and encourages us to push the boundaries and produce ground-breaking work.

Man and woman side by side, head and shoulders
Zamila with Race Disparity Audit director Marcus Bell

I was spurred to write this blog when, as my most recent attack came on, Marcus said: “I noticed the temperature change today and was worried you might get a migraine – go home, rest and don’t worry, we’ll handle things here.”

I was so deeply moved by his acute awareness and understanding of my condition that I realised how great it would be if more people across the Civil Service understood migraines and other such conditions – how they affect the sufferer, impact on their team and how we all can work and get along better if we take the time to understand each other. And, crucially, recognise that such conditions – while debilitating – should not limit our ambitions, career and life goals.

Graphic with legend 'A great place to work'We can genuinely achieve these if we have the right support. I still have many goals in my sights and my migraines, while a reality, will not stop me!

Marcus Bell, Director, Race Disparity Audit, writes:

I had no previous experience of migraines or migraine sufferers before meeting Zamila. The condition quite clearly knocks her for six, whenever it happens, though she usually bounces back from it really quickly.  

I’ve learned from experience to spot the warning signs that an attack may be on the way.  Zamila mentions temperature change - and that’s certainly a “tell” - but actually an even more obvious sign to me is that Zamila just stops being herself. She is a very outgoing and upbeat person, so if she stops being like that, it’s almost always a sign that something is up.

Zamila really doesn’t like making a fuss about her condition, so I try to let her know that it’s OK to talk about it and that, if she needs to take some time, she should take some time. She always returns brimming with energy!

The Migraine Trust logoIt’s Migraine Awareness Week from 2 to 8 September. If you want more information, please visit the Migraine Trust website.

 

91 comments

  1. Comment by Nigel Evelyn-Dupree posted on

    Chicken and Egg conundrum in terms of potential triggers from mental / emotional stressors and/or visual stress / eye-strain exacerbated by poor display screen interface ergonomics.

    Those who experience Migraine aura, the visual disruptions either alone or as a warning of approaching migraine, know only to well, how distressing these events are and can include loss of balance, spatial awareness, nausea / vomiting, even paralysis, risking mishaps, bumping into things, slips trips etc and not at all funny if driving.

    I for one, have never forgotten “the eternity” of three or four days curled up in a dark room with my head in a vice wishing I were dead and to this day remain so aware of the warning signs will avoid the risk like the plague.

    Hence my obsession with promoting the common predictable risks of eye-strain, CVS, Screen Fatigue and related repetitive stress injuries codified in the WHO ICD-10 under the heading of Asthenopia.

    Based on HSE figures, around 58% of DSE operators report stress related over-exposure, discomfort, eye-strain, visual disruptions exacerbated by prolonged (longer than an hour a day) on-screen. Whilst around 19% will have preexisting symptoms of Asthenopia from childhood, along with myopia, the rest will be at risk of, eye-strain, double vision, lazy-eye etc, or acquiring these visual disruptions manifested in presenteeism.

    DSE "Accessibility" is key to reducing or mitigating the risks so, over the last 16 years I have been enabling Digital Literacy in at risk children and, only now launching a Digital Health & Literacy Campaign as finalists in the Lloyds Bank National Business Awards "Positive Social Impact"

  2. Comment by David Metcalf posted on

    As a fellow sufferer of Migraine - Thanks for the posting, very informative and can only help to raise awareness of the condition.

    Here's to hoping your next attack is a fleeting one.

    All the best.

  3. Comment by Jayne Dobner posted on

    Zamila great article and one I can really relate to as a life-long migraine sufferer myself. Getting treatment for migraine can be a real challenge for people, it took me years to get my GP to prescribe 'triptans' to help reduce an attack and I am pleased to say in those early days I had a really good understanding line manager. Thankfully my attacks are much less frequent now and less impactful. My advice to anyone suffering with a long-standing health issue is to speak to your line manger and use employee support services we have in the civil service getting, as you say having the right support is essential.

  4. Comment by JACKIE JOHNSON posted on

    HI Marcus
    I just wanted to say thank you for writing your blog telling everyone how you suffer with Migraines.
    I am too a Migraine sufferer, I think that Migraines are misunderstood especially when people say "oh its only a headache"
    I too strive to come into work- which I do but sometimes have a brain fog after a Migraine.
    Thanks Jackie

    • Replies to JACKIE JOHNSON>

      Comment by jackie posted on

      Hi I would just like to say on the day in question I put my reply up I had such migraine. Hence me calling Zamila- Marcus
      sorry

  5. Comment by Lucy posted on

    Hi Zamila,

    Thanks for writing this article - it was great! I also get migraines and it really is misunderstood - the "it's just a bad headache" line drives me mad. I've had migraines before that have left me knocked for six and left me feeling bruised for up to 5 days afterwards, a really unpleasant feeling.

    I also think it's important for people to realise that migraines also come in many forms - I get stomach migraines and migraine associated vertigo which makes me really dizzy and I have to carry endless amounts of medication around with me just in case! All of which combined can make being in work with the thought of a long commute home frankly horrible.

    Luckily I work in a team that is flexible and is happy for me to go home when I get ill, but migraine conditions definitely need to be better understood more widely to ensure others also get the help they need - so thanks again for your blog piece!

  6. Comment by Winnie Kyomuhendo posted on

    Hi Zamila.

    So sorry about your struggle with migraines. Thanks for the article which gives us migraine-sufferers strength. I have only just recently been diagnosed with migraines and I am still struggling to learn how to cope. I get agitated when some people, including those I am close to and share my medical experiences with, say things like "oh, it's just a headache?". One of the most important things that a migraine-sufferers can have at such a time is a support network both at work and at home.
    I hope I will get better at coping and pray that maybe one day, the migraines will disappear permanently. I wish you all the best as well. Thanks again.

  7. Comment by Rob Lamb posted on

    Good article & many thanks for sharing your story. As per other people leaving comments here I also suffer from regular Migraines.

    Brain fog or 'Postdrome' usually the 3rd stage of a Migraine also needs to be highlisted as for sufferers it's like walking & talking in toffee after an attack. In turn it can affect a persons ability to work effectively and can last last up to hours or days.

  8. Comment by Jane Dawson posted on

    I can only add to all the comments so far. As a long time sufferer of migraines it was good to read such an articulate article explaining just how debilitating attacks can be. It is a difficult thing for people to understand.

    I have been very lucky with my line managers, all of whom have been very understanding. Like you I do all I can to minimise attacks but can be caught out for what appears to be no reason.

    I agree about the post migraine symptoms too (Posted by Rob). The drugs I have are very strong and I often feels the effects after the migraine has gone.

    Thanks again for sharing.

    Jane

  9. Comment by Amanda posted on

    I have Classic Migraine and SUNCT (very rare - lucky me). I rarely have an attack lasting more than a day - unlike people here (poor things) - but I agree with Rob and Jane, there's definitely a day or so where I have a migraine 'hangover'.

    My experience has been that most people don't understand and think it's just a bad headache. I've even seen people label their own headache as 'migraine' to emphasise its severity. And I had a manager once who said "Oh yes, I get migraine. I take a couple of paracetamol and it goes". I had to bite my tongue very, very hard.

    My symptoms can vary which probably makes it more difficult for colleagues to realise what's happening to me. I often can't find the right word and sometimes my speech slurs - I can sound confused and drunk. I don't always have the wherewithal to get myself home because of the brain fog. Triptans help, but they bring other side effects and mostly subdue rather than eradicate the pain.

    My grandmother had migraines and my mum does too. She missed my brother's wedding as she had a migraine on the day. It really does affect your life, no matter how careful you are.

    It's reassuring to know I'm not alone - and I'm glad so many people are getting support for what can be a really debilitating illness. I live in hope of there being a proper cure one day.

    • Replies to Amanda>

      Comment by Pam posted on

      I am another than can only add to the thanks for writing this.- But Amanda, your experience sounds so much like mine- the misunderstanding, the 'only a headache' and the thought that paracetamol will make a difference.

      These days I get migraines less than I used to - at my worst it was at least once a week- but lessening stress and changing medication, drinking fluids, avoiding certain foods etc etc has all made a difference,. But I still get the once a month aura and sharp pain and nausea that tells me to go home before I can't drive- and making people understand that although I look 'well' now I will not in about an hour- is very hard sometimes.

      I still haven't got all the adjustments I need at work but I'm still pushing for them - and that always helps.

  10. Comment by Gavin Thomas posted on

    Thank you Zamila for sharing your personal experience and for enlightening me. I had never really appreciated how such a condition could have such an impact on the day to day life of someone. It is good that you have an understanding Manager and you are able to put into place reasonable adjustments that still allow you to deliver in your role. Once again, thank you writing this blog.

  11. Comment by Lesley Eccott posted on

    Great blog Zamila, thank you for sharing your experience and making others aware of just how debilitating Migraines can be. Keep up the good work.

  12. Comment by Kaz Leeson posted on

    Thank you Zamila for sharing your experience and helping everyone who has this debilitating condition. I hope that people who read the experiences shared here will now better understand what true Migraine is and how it impacts on everyday life.

    It is disappointing to see how many people have said 'my current line manager is understanding', it should not be a lottery for people who suffer a hidden condition to have an understanding line manager. It should be in HR policy that all line managers should support staff in the right way when an illness is not of their own making and they have little control of it.

    I also suffer from Fibromyalgia along with migraine (all be it occasional) and they are both hidden conditions that impact on my daily life. Like you Zamila I have keep to a routine, manage what I eat and ensure I get enough rest otherwise I suffer a flare up of Fibromyalgia or a migraine.

    I am one of the 'lucky ones' I have a very understanding and supportive line manager but I know others have not. Consequently they suffer more often due to the pressure and stress that the lack of support causes, it can be a never ending vicious circle.

    The civil service should have a policy on supporting people with hidden illnesses such as migraines, fibromyalgia, etc, maybe we do and I haven't seen it. These conditions do not define us or stop us, infact I think it makes us more determined in everything we do but when we have 'that migraine or that fibro flare up' we get better more quickly if our condition is understood.

    As part of the Civil Service committment to health and wellbeing maybe HR should ask the question, 'do you suffer a hidden illness and if so, how can the civil service help you'

  13. Comment by Wendy Minney posted on

    Thank you Zamila for sharing & giving a voice to the rest of us fellow migraine sufferers. It must be 20 years ago that I was prescribed low dose Amitriptyline to combat cluster migraines. I was desperate & could only see a future with no quality of life. I still can’t believe 1 tiny tablet a day has been able to reduce migraine bouts that were so bad they temporarily took my eyesight, to now just having the flashing lights & occasional nausea.
    I understand medication isn’t for everyone but there are solutions out there for some of us, to reduce the symptoms.
    As you mentioned it’s vitally important that you have a manager that understands what you’re going through. I’m very lucky at the moment in this respect but it has been a rollercoaster of different perceptions over the last 36 years.

    • Replies to Wendy Minney>

      Comment by Lynne posted on

      What a great post. Wendy I too have been prescribed Amitriptyline from my Dr a few years ago after struggling for 3 months with migraines and my blood pressure going up. Could count on 1 hand now the number of migraines I have had since then and even if they do come they are no where near as bad. Think it also helps to have a Dr willing to try different meds to get the correct one for you.

  14. Comment by Phil Spracklan posted on

    Thank you Zamila, a great blog and also to Marcus and others who have commented. I too suffer from migraines and very regular headaches, possibly relating to other underlying conditions, as well as the dealing with the added complications of medication side effects and diet. I tend to not show the affects so clearly, so if it's got to the point that others can tell it's usually got very bad. So it's interesting to see the different aspects described here, which unfortunately just add to the difficulty in diagnosing.

    Whilst I've had some problems at work and we can always do more to improve occupational health support and accessibility, in general the civil service has shown strong leadership in this area. For me, it's meant that a chronic medical condition doesn't stop me working a full job and progress my career. It's been a long time since anyone (dared to) say "it's just a headache" to me, but it does still go on. I think it's more to do with general attitudes than expecting us all to be fully converse in every medical condition out there, so in that vein, this kind of article means a lot. Thank you

  15. Comment by John Green posted on

    Thank you for sharing Zamila. I had a Migraine free life for over 40 years until one Friday evening I was admitted to hospital as I had no control of any part of my body. The room was spinning I was violently sick and could not walk. After initial checks I was diagnosed with Vestibular Migraine. I was prescribed medication that "would ease the symptoms" but this was not the case. These symptoms give you no warning when they will strike.
    Symptoms include extreme pains in the head, dizziness, nausea and a low feeling.
    Having to juggle family, work and Migraines is a mammoth task and coupled with the knowledge that there is no cure can be upsetting, but we get through life.
    I hope that one day there will be a "miracle cure" but until then...........

  16. Comment by Zeba Khan posted on

    Thank you Zamila for sharing this with me.

    I used to be ambitious and a very high achiever and had a mental breakdown
    a couple of years after joining the Civil Service.

    It's heartening to hear that there is inclusion in practice for people like me who are ambitious but have a lifelong or incurable condition. In my case, I realise that I need to look beyond feeling gratitude and restore to myself that sense of ambition that I used to have.

    Zeba Khan

  17. Comment by Stella posted on

    Thank you for sharing. I suffer from the same.I lost so many days with my head under the pillow trying to avoid the light. Fortunately I was put on to preventative medication about 10 years ago and given Maxalt wafers for when the pain starts.
    Mine are more under control now which is good, because given my sick absence record before I started on preventers I would certainly be out of a job by now under the present Attendance Management Policy.

  18. Comment by Ex-Migraine sufferer posted on

    Thanks for the blog - I hope it helps everyone understand more about how awful migraine can be - my worst attack was whilst working for HMCTS - & saw me lay under a desk in a deserted office to sleep for a few hours as I was too unwell to catch the train home - no manager at the time was aware of the severity of pain a migraine can cause so I really hope this raises understanding.
    Since being diagnosed with having antiphospholipid antibodies - a feature of Hughes syndrome or sticky blood & taking aspirin daily I no longer suffer - so worth getting blood test to rule that out if anyone hasn't done that already.

  19. Comment by Liz Farnham posted on

    Thank you Zamila and everyone for sharing your experiences. It is good to know that I am not alone. I too am a life-long sufferer of migraines and have often struggled to explain the impact on my personal and work life.

  20. Comment by Lisa Mynott posted on

    Hi Zamila

    I have one good tip for you to control your attacks - give up regular tea and have decaffeinated instead. I did this many years ago and I noticed a drop in the frequency of my migraines, very rarely do I suffer now.

    Hope this helps

    • Replies to Lisa Mynott>

      Comment by Kathy Bruce posted on

      Lisa I too noticed a reduction in my migraines after switching to de-caffeinated tea. I am fairly new to migraines - only having experienced them for the past 10 years or so. My late mother suffered with them, and I thought I had escaped until recently.
      Mine are not as severe as those reported by many on here, but as they consist mainly of the aura, with a less debilitating headache, I have to stop whatever I am doing as I literally cannot see properly. I have prescription Triptan tablets which I take as soon as I realise there is a 'hole' in my vision - which is the warning that one is starting - and these help to shorten them, but I do have to just lie down and wait for it to pass. I too feel very washed out afterwards - and feel that I have been run over by a steam-roller! Thanks Zamila for raising awareness of this debilitating condition.

      • Replies to Kathy Bruce>

        Comment by A posted on

        Hi Kathy just a suggestion, I suffer from what has been described as Visual Migraines with a loss of vision and seeing silvery lights. We have discovered that this links very closely with hormone levels (I had a hysterectomy over 10 years ago and the migraines started after that). May be worth checking that your hormone levels are high enough?

  21. Comment by Fellow Sufferer posted on

    Zamila, Thanks for your post and for raising awareness of this condition. I've suffered from classic migraines for 37 years and have a rare form of epilepsy which is triggered by migraine aura. When experiencing a migraine, as well as dizziness, a blinding headache and nausea, I can lose my sight, my speech and the feeling in my hands and this can sometimes lead to a full blown seizure.

    I hope that people who read the experiences shared here will now better understand what true migraine is. I agree about the post migraine symptoms too, I can feel terrible for days afterwards.

    It is encouraging to read that so many people are getting support for what can be a really debilitating illness and that this is being taken seriously at a senior level within the civil service. Thanks again.

  22. Comment by Janet Southern posted on

    Thanks so much for highlighting this awful condition Zamila. I too suffer with migraines and have done so for the last 30 years. Several years ago I was so bad I was almost suicidal. This led to a referral to an amazing neurologist who has now put me on a course of Botox, this has changed my life. My migraines have reduced so much I am like a different person. I have also reduced my hours at work which has really helped.
    As others have mentioned in their posts, it is frustrating when people overuse the term migraine for what is in essence a headache. Why people would want to say they have migraine when they don't is a mystery to me, I would do anything to not have this terrible condition!
    Thanks again Zamila for highlighting this issue, you are inspirational.

  23. Comment by Emily Tarver posted on

    Brilliant words Zamila, it's great to read a blog highlighting a condition which by many, is brushed off as 'a bad headache', but highlighting that an understanding manager and colleagues can make a real difference when an attack floors you.

  24. Comment by John Livesey posted on

    I also suffer with migraines, seem to be quite a few of us, which used to mean me being off work for one, two or three days a month. Since being prescribed Triptans a few year ago things have got much better, I find they work if I take them early enough. I only drink decaffeinated coffee, avoid dark chocolate like the plague and always make sure I have the tablets with me wherever I go. Great article, always good to know you're not alone.

  25. Comment by Also A Sufferer posted on

    I'm one of many who suffers from this condition only to have had it dismissed as a 'bad headache', and witnessed the term misused by people who don't experience them to describe what is genuinely a bad headache.

    The more awareness and understanding people have about this condition, the fact that pain is only one aspect of the condition (and indeed that pain-free migraine attacks are possible and equally as debilitating when they happen), and that it's an internationally recognised medical condition supported by medical research funding, the better.

    Thank you so much for writing this article.

  26. Comment by Sarah posted on

    Dear Zamila,

    Thank you very much for writing this and therefore drawing attention to migraine. Apparently, the WHO has classified migraine as being among the 4 most debilitating diseases known to mankind (the other four being dementia, acute psychosis and quadriplegia(!)), and it affects roughly 25% of women and 10% of men.

    I've had 30 years migraine-free and have suddenly had to get to grips with 2 and a bit years of Chronic Vestibular Migraine. It's been extremely difficult to live through so far.

    I wonder if you, or we, or Civil Service Representatives could use our position to put a better case on impact of the disease on working lives to the Department of Health and Social Care, or to the UK Research Councils as relevant, or possibly to International Organisations and other funding bodies, in order for migraine to be more thoroughly / better researched and therefore a remedy more likely found? It seems that migraine research globally receives scant interest and therefore funding, as a lot of people do still see it as 'just a bad headache'.

    Maybe the best argument for research funding is that migraine seems to strike the majority hardest in their most productive working years - we need a complete, productive workforce as the dependency ratio changes with more elderly people around for longer. Extending lives and preventing treatable deaths is obviously great, but maybe the focus should shift a bit now in medical research to more successfully treating the conditions that cause great disability and dependence / poor quality of life, but which won't by themselves kill a person.

  27. Comment by Helen Emerson posted on

    Hi Zamila
    I too suffer from acute migraines. These started in my teens and at the time manifested themselves as classic migraine (vision disturbance followed by severe headache/nausea). My migraines tend to start with bright light and hormonal changes. The migraines have now transformed in later life into vestibular migraine with lots of blurry vision and severe headaches. Luckily I haven't lost work over recent years with this as my GP has prescribed some fabulous meds that halt any major attacks before they get any worse. Social media groups have also helped me with advice and tips.
    Thanks for sharing your story your tips around having a routine are very helpful, as a fellow sufferer I can totally relate to what you are going through.

  28. Comment by Zamila Bunglawala posted on

    Hi All,

    Zamila here - I wanted to say thank you for all your amazing support and sharing your wonderfully inspiring stories.

    Thank you also for the great tips of how you manage your migraines - so encouraging - I'm definitely gonna try some of these.

    It's so heartwarming to read your comments, learn how attacks are similar and differ for so many of us, how we cope and how vitally important it is to have understanding and supportive managers and teams.

    Wishing you all great health and hope your next attack passes swiftly.

    Best wishes,

    Zamila

    • Replies to Zamila Bunglawala>

      Comment by Debbie posted on

      I am on preventative medication but still have 4-5 migraines of varying intensity and duration, but always one a month that confines me to bed for a whole day.
      When I worked in the Tax Credits contact centre I would call in to resources and advise I had my monthly migraine and they would switch that day to a non working day and I would work the Saturday instead.
      Unfortunately I am not able to do that in my current post and my monthly migraines are considered a 'cause for concern' in regard to my attendance.

  29. Comment by Sakile posted on

    Thank you so much for writing this. Have suffered with episodic migraine for 14 years. It's great that people are talking about this in the public demain more, so people can understand (although my line managers so far has usually been supportive). It is also really important to know that everyones migraines are different, and people don't suffer the same symptoms. There are no known triggers for mine, which can be slightly stressful and then they can continue daily for weeks. They are completely debilitating, and have struck at the most awkward times, for example when out on a date! I lose vision in my right eye and it feels as though i am having a stroke, as one side of my face droops.
    Solidarity to all of us migraine sufferers!

  30. Comment by Sami Rahman posted on

    great blog and thanks for sharing Zamilla : )

  31. Comment by Phil Dent posted on

    Hi Zamila,
    I get a migraine every 3 to 6 weeks. Thank you for raising this topic.

  32. Comment by Linda Hancox posted on

    Thank you Zamila I too suffer and have hemaplegic migraines which sometimes are so severe that the symptoms mimic a stroke and are really very frightening. I have even been admitted to hospital on a few occasions. I have a wonderful group of managers who are very supportive of me and this makes a really big difference but I do have concerns for other sufferers around the sickness absence policy , every time I have to take time off I end up feeling stressed about trigger points etc but as I say I am lucky enough to have a supportive manager...there will be colleagues out there without that support and that is a worry.

    • Replies to Linda Hancox>

      Comment by Tracy Williams posted on

      Linda
      Thank you for posting on this very important and debilitating condition. I also suffer with hemiplegic migraines. I have been hospitalised in the past for particularly nasty attacks. I also suffer quite frequently from these attacks, it is very frightening for anyone who is with me as the symptoms are so similar to those of a stroke it causes great distress and upset not just for me but my family and friends too. I also have other conditions, Rheumatoid Arthritis and Fibromyalgia, High Blood Pressure and Vertigo, which can make my life very difficult. I am very aware of the concerns for sufferers around the sickness absence policy, I end up stressing about the trigger points and Attendance Management Process, which of course does not help with my other conditions or the migraines themselves. I sometimes feel that I am in a vicious circle, as they all seem to be connected and one will trigger the other. I enjoy working but cannot seem to make others understand how difficult it is to deal with these invisible conditions. It does sometimes makes things so much harder when you do not have the understanding of those who are supposed to support you. I do take daily preventative medication Pizotifen and use Triptans to assist with the treatments of an attack along with Amitriptyline and strong pain killers. It certainly lifts my spirits to know that there are other people out there who do understand. There are after all approximately 10 Types of Migraines out there!!!

  33. Comment by Another Sufferer posted on

    Great blog post. It is unfortunately far too common to find managers who don't understand what they are dealing with. It resonated with me that when I have one the best anyone is going to get is a short text so to be asked to send an email (which takes longer) by a new manager tells me I have now got one who doesn't get it and thinks its just a headache. I sometimes wish those people could feel what we do. It isn't fun curled up on the bathroom floor for several hours having chucked up and not feeling you can make it to a bed to lie down. But I've been trying Botox for migraine now and maybe its placebo effect but it seemed to do the trick as for the 3 months after first treatment I was pretty much clear. Fingers crossed!

  34. Comment by Karen posted on

    Fabulous article which describes migraine in acute detail. As a fellow sufferer, I too experienced the same once a month attacks, had every medication trial possible, only to settle on the Triptans which didn't prevent the absence from work. Often I struggled into work post-episode just to limit the absence and not let down colleagues, but I wasn't as efficient. As predicted by the doctor it all stopped when the menopause arrived. Now migraine free but the menopause brings its own challenges which are quite severe at times. How refreshing that your colleague was so understanding; I didn't find this all the time. Here's hoping that all medical conditions, where the sufferer battles on in silence, get the airing and understanding that they deserve.

  35. Comment by Another sufferer posted on

    I suffer from Migraines, as does my mother and I can only endorse what others have said. However, what further 'muddies' my situation is that since my office was closed I have to drive to and from the office in a journey that can be over an hour in peak times. So I have to try and spot the very early signals to be able to safely drive home in time. As Zamila has said I need to get home and lay down in a quiet dark room to avoid vomiting, vertigo etc.
    However, I've had comments from colleagues saying "It can't be a proper migraine, or you wouldn't be able to drive home" or "Its only a headache why do you have to go home" .
    So, many thanks for writing this article - the more we can do to highlight just how debilitating migraines can be, the better. If our colleagues are more understanding then it really helps with coping and recovering from a Migraine attack

  36. Comment by Janice Betson posted on

    Thank you Zamila, for posting this great blog. I too have suffered from migraines all my life, as did both my parents. For many years, like you, I had attacks once a month - one day of total agony when I could not function at all - a pain, usually from front to back through my right eye as if somebody had stuck a knife in it, nausea, sensitivity to light, and unable to bear any stimulus at all, and two days of trying to function normally with a brain that felt as if it was full of wire mesh. Nowadays I usually only get the aura, but that is very distressing. It starts off with not being able to see properly in a small patch, then that turns into spiralling brightly coloured lights. They revolve in a circle ever increasing in size. In the centre of the circle, which gradually gets bigger, I can see clearly, but wherever the lights are, I can't. Fortunately, this usually only lasts about 20 minutes, and mostly these days is followed by much milder migraine symptoms that when I was young.

    I hope that your attacks reduce in intensity as you get older. Thank you for raising awareness of this horrible affliction.

    • Replies to Janice Betson>

      Comment by Jane posted on

      Hi Janice
      If its any consolation I suffered migraine attacks for may years, presenting as sickness and stomach pain when I was a child to full blown incapacitating pain and sickness. However when I turned 40 I had one that lasted a week and have not had another since! It was almost worth it to be without this awful condition.
      So many people say just a headache, but a headache can be the very least of it.
      A colleague was given medical retirement due to migraine, so its pretty serious.
      All the best.

  37. Comment by Alexandra Pyatt posted on

    It was great to read your article. Not because you suffer, but because it is the first time I have seen this recognised how debilitating migraines are. It is amazing how Marcus has actively made himself more aware too so that he can understand. Before I joined the Civil Service I had a very difficult employer who had no itention of thinking anything other than skiving due to a bit of a headache because I wanted a couple days off each month, I had to hand in my notice as she made life unbearable.
    My migraine journey is very similar to yours. I have had them since a child and they are hormonal and genetic. Vice like pains, constant nausea, vision problems etc. Once I was prescribed 'triptans' they became easier each day to function, however they now last longer as I'm keeping it 'at bay', so sometimes I have to let them run their course.
    I have also had some very abnormal migraines without headaches. I have been rushed to hospital (from work) in an ambulance with classic stroke symptoms, and only after scans have they said it must be an abnormal migraine..scary ones.
    Anyway, thank you. You have inspired me to push harder as I know that these are temporary and do not have to effect my whole life.

  38. Comment by Lana Dimitrova posted on

    Thank you for sharing this. I am only too familiar with your migraine experiences because I have very similar if not exactly the same symptoms during an attack.

  39. Comment by Caroline Marshall posted on

    Thank you so much for this article.

    I suppose you could say I am one of the lucky ones as I have migraines without the aura. So even though I have the other symptoms of pain and nausea I can at least manage when they do begin, which believe me can be daily.

    My mother also suffers with migraines but she has them with the aura, so I know first hand how that element of a migraine can be so incapacitating.

  40. Comment by Andrew Howarth posted on

    Great article, Zamila, and encouraging to hear colleagues' comments above.

    My migraines started at the age of 9 and I can remember the panic and distress of that first attack, mainly because no-one at school knew what the problem was. Fortunately my attacks have reduced over the years and I am now in my 60's, but as any sufferer knows, there is always this dark shadow lurking in the background threatening to disrupt normal daily life.

    I have targeted certain factors which are particularly aggravating for me, such as lack of sleep and over-anxiety, but foods like chocolate (which I haven't eaten since I was 19!!), nuts, and high protein meats such as liver and kidney, I avoid avidly.

    Let's hope there's a simple cure in the future but in the meantime we need more understanding managers like Marcus.

  41. Comment by A fellow sufferer posted on

    Great blog!
    Always annoyed me when people say they have a migraine and its clearly a bad headache! Once you have experienced a migraine attack you know the difference.
    I suffered from migraines from being a small child and can equate to all the symptoms you described Zamila. I once had an attack so bad the doctor was called and he gave me anti-emethics and an injection to knock me out for hours to get through the pain.
    If it is any comfort mine were also mostly linked to my hormones and the advantages of being a lady of a certain age is I can go many months now without an attack- there have to be some compensations for age!

  42. Comment by Migraine Sufferer posted on

    To echo everyone else's thoughts, thank you for this article.

    I also suffer some from migraines and the causes (or triggers) for my attacks are still unknown. I have been on various types of medication throughout the last few years and although some of them reduced the pain and/or frequency of the attacks they all seem to have other diverse side effects such as extreme fatigue and mood swings.

    The only thing that I have found that actually works in reducing the frequency and pain of the attacks is my Daith piercing (a small bit of cartilage inside the ear). I had read a lot about this piercing working as a cure for migraines but I put off getting one as there is no scientific evidence to explain why it works. After several very painful disabling migraines I was willing to try anything and decided that if it didn't work I didn't have anything to loose because I could just remove it. Low and behold it actually worked. Apparently it works similar to Acupuncture. I still get them every now and again but once a month is 100x better than three times a week!

    I know this solution wont be for everyone but if anyone is already considering this option and isn't sure what to do, please try it!

  43. Comment by Dawn England posted on

    Thanks for the article - I used to suffer from dreadful migraines (hormonal - monthly etc) but they could last for 1-2 weeks each month. I took tablets when I had a migraine and they made the migraine go away after about 2 hours but the side effects of the tablets would last quite a bit longer. The 'head fog' that others talk about and the slurring of speech, feeling VERY tired and having the 'migraine munchies' afterwards. I had to drive to work so that was a problem as I couldn't drive until at least 4 hours after taking a tablet - not very helpful when you work for a living. In both jobs I was in I had an understanding line manager but would often get comments from others about the amount of times I 'came in late to work'. I gave up explaining why after a while!. 'Luckily' I am now going through the menopause so the migraines have virtually stopped (as I was told they would by doctors) but, of course, that brings it's own problems but nothing like the impact of having migraines (so far at least)! My immediate colleagues were mostly supportive as they could see what I was like when I did get into work but there were the few with the 'oh, I get bad headaches too' that you just wanted to slap but ended up nodding and walking away!

    Thanks for the article and all the comments - it helps to know that others appreciate what you are going through. I get the odd migraine now but my life is 50%+ better than it used to be. I wish all of you the best!

  44. Comment by Jennifer Thorp posted on

    I have migraines but generally without the severe headache these days, just what I call "the edges of a headache", which is even more difficult to explain to colleagues! I get a scintillating aura, numbness (both mental and physical), nausea, sensitivity and confusion, and everyone says "just go home" and I have to explain that I can't, because I can't see to drive. When these migraines re-started after some years without, my initial reaction was to run to a darkened room, but I've actually found that keeping gently moving is better. But there's no one-size-fits-all remedy.

  45. Comment by Lorraine White posted on

    Thank you so much for writing this article - reading it I thought I could have written it myself almost word for word.
    Like you, my migraines are hormonal and I can't control them. I am also an outgoing, positive and passionate person and I hate the fact they are so debilitating and 'ground me' in a silent dark room for sometimes up to 3 days. Like you my I have had them since childhood and my mother was a fellow sufferer.
    They have been a blight on my life but it makes me appreciate my non migraine days all the more. My light at the end of the tunnel is the menopause! My mother's ended after that and I believe mine will too. At 54, I'm almost there!!

  46. Comment by Joanne posted on

    I could've written this myself! Everything you describe is exactly what I experience with a migraine & I do exactly the same things as you i.e drink 3-4 litres of water, eat regularly etc but haven't tried acupuncture so think I'll give this a go, thanks so much for writing this it's nice to know you're not alone and awareness is being raised about the condition & how debilitating it is.

    • Replies to Joanne>

      Comment by Darren Irvine posted on

      Definitely try acupuncture Joanne, I did and although it didn't work, it's a treatment which does work for some. It's the debilitating affects of migraine that get me the most. I'm on my third cycle of botox, so if you have/can get a referral to a neurologist, then doing your research about what your local NHS Trust offers goes a long way.

  47. Comment by Alan Menezes posted on

    Marcus , I can say that real heroes are those who understand others and make the difference with little things, that was a great note of concern to show being aware of Zamila's health.

  48. Comment by fellow migraine sufferer posted on

    Great article - thanks so much for sharing this Zamila.
    I suffered from migraines as a child, and they have resurfaced over the last couple of years. They have severely impacted my attendance at work, and as a consequence, negatively impacted my confidence and level ambition - so it's really encouraging to hear stories like yours and from others who have shared in their comments. Things got quite bad recently, but talking to my GP and discussing with my line manager has really helped, and have been able to implement a number of work place adjustments. However, my attendance is now under review and I'm conscious of the impact this may have for my job - has anyone else experienced the same?

    Definitely recommend routine, more sleep, taking time away from screens, and plenty of water!

    Fingers crossed for fleeting or less severe attacks in future for you all

    • Replies to fellow migraine sufferer>

      Comment by Darren Irvine posted on

      Attendance management is about supporting an individual so if it's being portrayed by your manager as a negative, I'd certainly try and flip it into a positive and at the end of the day they have a duty to you, regardless if they understand it or not.

      The issue with migraines for me is it is hidden, but I'm lucky that I have a manager that understands this but in previous jobs I just got on with it for the fear of having the conversation and being put down for 'having a headache' which is worse now I look back on it.

      As a sufferer, I think we have to be proactive to make ourselves understood.

      • Replies to Darren Irvine>

        Comment by S posted on

        Regardless of the supportive measures built in to the attendance management policy, at the end of the day it is business focussed and is about what is acceptable to the business, regardless of how genuine the illness. There is only so much the consideration points can be extended and only so many times a manager can waive a warning. Eventually even with the most supportive manager, those with a chronic condition will come to be persecuted by this policy.

    • Replies to fellow migraine sufferer>

      Comment by Tracy Williams posted on

      Yes I am currently going through the same thing. Have you had an occupational heath review. My latest one with Duradiamond was really good at laying out the symptoms and effects of a migraine with information of how long they can last etc. If not give it a go!!

  49. Comment by Silent Sufferer posted on

    Thank you for raising this! when I younger I suffered from migraines dreadfully each month due to hormonal changes. My suffering included paralysis down 1 side, vomiting, pain, ultra sensitivity to light and sound and the "headache" was the final insult to a terrible experience. I was 12 when these began and I thought I was going to die each time! I found myself feeling so low and dreading each monthly 'episode' and feeling that nobody really understood (parents, doctors and teachers alike) In all honesty, it left me feeling suicidal. Eventually I found that my hormones became more balanced over the years and the episodes became fewer and further between.
    Now I am of the age where my hormones are changing again! Whilst now I do not have the paralysis that I suffered with previously with my migraines, I have blindness in my right eye! I am able to predict when the ocular migraine occurs in advance due to changes in my vision which means I can react and behave accordingly (stop driving/don't drive, warn people that I am about to have an episode etc)
    Experience re support from a line manager varies enormously and can be a frightening prospect to have a discussion re a 'hidden' illness as this can mar any chances of being treated equally. I've known managers that have used 'hidden' illness as a way to exclude you from a team/opportunities etc. Due to other health issues, I have not felt able to raise my hand and say I have 'another' health issue. I can almost hear the sigh/see the roll of the eyes now! Having read your article, I think I may brave it and let them know! Thank you!!!

  50. Comment by S Jones posted on

    Not to intentionally worry people as it is rare, but frequent migraine is a symptom of a genetic neurological condition called CADASIL. This may be worth looking into, particularly if there is a family history of migraine with aura and stroke. I suffer from migraine as a result of this condition and sympathise with Zamila and all who have commented on this article. The pain is bad enough but the aura can be very distressing if it effects your speech and sight.

  51. Comment by Darren Irvine posted on

    Zamila, thanks for writing this. It's refreshing to hear leaders share their experiences. I am a migraine sufferer, started with abdominal pains, and everything you share helps people to understand what we go through.

  52. Comment by G Hopkins posted on

    Good article and awareness of this debilitating condition needs to be raised. Migraines are not just bad headaches - as so many sufferers have already commented. I suffer occasional migraines - only a couple a year thankfully - but mine include severe nausea, aura, partial sight loss, light and sound sensitivity and, obviously, the pain. Triptans are a life-saver and ice, ice and more ice. Sharing experiences and tips is really helpful. For me, it has to be ice in my eye sockets, behind ears, on top of my head and on the back of neck and, of course, the Sumatriptan.

  53. Comment by Michael Hopkins posted on

    Great article, very well written, and my sympathies to Zamila with having to cope with such a debilitating condition. I would just say that whilst I don't know what the situation is at Zamila's level, in cases involving staff at less senior levels, taking days off with migraines will often result in the "attendance management" procedures kicking in, and may mean the member of staff receiving a warning if they exceed their trigger point - even allowing for an extended trigger point due to disability. Hopefully there will be absolute consistency and fairness at all levels, as people do worry and often force themselves to attend work whilst still unwell. Just saying......

  54. Comment by Jo Hunt posted on

    This is encouraging to hear about support and understanding going right through the higher echelons of management within the civil service. Through my own experiences I strongly believe that being understanding and flexible helps an employee suffering from a chronic illness stay in work and committed to work and more importantly still perform to the best of their abilities - it's all about give and take. I suffered regularly from Migraines (also linked to my monthly cycle) and also another chronic condition ulcerative colitis again for which there is no cure just management. I couldn't cope with the two together and the mini-pill took away my regular migraines - they still hit me when the environmental factors are right (or rather wrong). However, the support I have received with my other long term illness is exemplary - allowing me to work flexibly means I can meet my commitments and hours of work.

  55. Comment by Migraine is a pain! posted on

    I suffer from hormone migraines to. It's nice to read about other people's symptoms and realise it's not just me. I start with brain fog and my words come out the wrong way around. I can feel it building up and I know I have to get home asap. They’re getting worse as I’m starting with the menopause and I don’t know when they will start month by month. My heo has been great and very understanding. He organised a OHS for me as it was affecting my sick leave. It covers me if I need sick leave for migraines. I have also filled out a Health passport. I give it to my new team leader so I don’t have to explain all my health issues every time I move to a different team leader or heo.

  56. Comment by Gill posted on

    Thank you Zamila for sharing your own experience with migraines and educating everyone on this blog. I'm truly sorry for anyone who has this horrible debilitating condition and I hope that those who read your story, will now better understand what Migraine is and how it impacts on sufferers everyday life. I now have a much clearer picture of the condition through the experience you shared and I do hope all our colleagues and managers provide the necessary support to migraine sufferers.

  57. Comment by Angela posted on

    Thank you for writing this article, not sure how many people it will reach since I imagine it will only appeal to sufferers, who already know the problems.

    But just in case a non suffer has taken an interest I'd like to emphasise that no two migraineurs have the same triggers, auras or symptoms. So, for example, a common belief is that during an attack we all seek out dark, quiet rooms but I don't like a completely silent room during an attack, because the migraine causes a tinnitus-like effect on me; this difference doesn't mean mine's less genuine.

    My trigger is perfumes; I understand the incidents of this particular trigger are on the rise. The best approach at work has been to isolate me as I can't rely on my colleagues to reduce or eliminate the use of very strong, heavy fragrances, which is a little disappointing and somewhat upsetting.

  58. Comment by Martyn J posted on

    Good article.
    My migraines are very different to yours (I suppose most people's are).
    20 years on and I'm still learning to recognise the early warning symptoms.
    My main ones are
    - severe sinus pain on the right side (sometimes develops into a migraine, sometimes doesn't).
    - weird 'feeling' above (and outside of) my right eye (not lack of vision, just a weirdness).
    - my wife has noticed that the day before a really bad migraine I behave 'differently', ie I get withdrawn, quiet, and act as though I'm very 'fed-up' with everything. Note: I don't notice this !

    I also notice that if I try to diagnose it early and take a 'normal' painkiller it does nothing at all for a migraine. Conversely if I take a migraine tablet it does nothing for a normal headache.

    I've changed recently from taking a Sumatriptan to taking 'Maxalt' (a Rizatriptan) and, for me, I find them MUCH better. They do reduce the pain (slowly but significantly) but they don't make me feel as sick as the previous Sumatriptan.

    • Replies to Martyn J>

      Comment by Martyn J posted on

      I've spent years looking for 'triggers' but found none.
      I've tried cutting out coffee: and drinking extra coffee. Tried cutting out chocolate, wine, pretty much everything. But it just seems to be pretty random.
      I've started keeping a 'Migraine Diary' and it does seem that almost all of mine are on a Saturday ! Maybe coming down from the work-stress ?!

  59. Comment by Ben Lloyd Godfrey posted on

    Thanks for the inspiring article Zamila, as (yet another...) fellow migraine sufferer I can empathise with everything you've said.

    For me, it took a while to discover the root causes of my migraines but some advice from an optician and my dentist mean I'm now in possession of some blue light filtering glasses and a mouthguard - both help enormously and I'm willing to trade-off the 'geek chic' look against mitigating the symptoms!

  60. Comment by Louise Taylor posted on

    Thanks Zamila and Marcus for taking the time to write this blog. I was diagnosed with Chronic Migraines over 10 years ago after collapsing at home. I now take daily medication to control them but have been left with a permanent headache as a result. I still get "breakthrough" migraines too and that means more, different medication when they happen. I totally recognise the picture painted by others of "before/during/after" and I do my very best to control them by doing all the right things,but sometimes they come from nowhere and the only thing I can do is get home, hunker down and wait for it to pass.

    Like others I too have had some really supportive Line Managers who have been amazing, and others who unfortunately have definitely been in the "well it's just a headache" world. The other thing I would also say is I have had some really good teams who have looked out for me and often stepped in, recognising small things like desks by windows when I am visiting or planning meetings so I get regular breaks even when I don't do this myself! I too have a Health Passport for when I move to a new assignment. I also make sure that my Partner knows exactly where I am given that I travel with my role as "getting home" has sometimes meant a trip for him too.

  61. Comment by Mai posted on

    Hello Zamila,

    Thank you for sharing your story. I am a migraine sufferer too, I think I got it from my late mother who had it worse than me. Yes, migraines are debilitating and what makes it worse for me is that I get frustrated because there is not much I can do, I feel powerless. I get less migraines now since I started taking a high blood pressure medicine and NAPROXEN, a medicine my doctor prescribed me which
    treats gout but does wonders for my migraines.

    Wish you all the best.

    Mai

  62. Comment by Florence Picken posted on

    Thank you Zamila for sharing your story.
    I too, am a migraine sufferer and have been for many years.
    Just over 2 months ago someone recommended a treatment to me for pain in my lower back and hip.
    It is Kinetic Chain Release therapy (KCR). I went to a local practitioner who diagnosed that my pelvis was out of alignment. She worked on me for about 40 mins. She explained all the different conditions that can be helped with this treatment. Migraine being one of them. I must say, I have not had an attack since. Whereas I was having them at least once a month. I am positive this has helped. It's worth a try.

    Florence

  63. Comment by Angie Harrison posted on

    Zamila
    It is so good to know that I am not alone. I also have had migraines since a child, (I was 6 when they started) and you are the first person that I know of who has had migraine since being a child. (most people start with them in their mid-late teens or early twenties)
    I have read a few of the responses (can't read them all just yet), but it is encouraging to hear how so many others also have to "withdraw" for a day or possibly two, to cope with their migraines.
    I find that a gel eye mask (the type you can put in the fridge) also helps with the pain if the migraine is across my forehead/behind my eyes. (Body Shop do a good one).

  64. Comment by Sarah posted on

    Thank you for sharing your story, as a migraine sufferer this really struck a chord with me. I'm lucky and those around me are incredibly supportive and forgiving of the frequent cancellations that have occurred over the last 2-3 years of Chronic Migraine.

    Thanks to medicinal Botox my migraines are moving towards episodic and the periods of debilitation are decreasing and a return to a normal life seems less like the pipe dream I thought it might be last year.

  65. Comment by Rob Day posted on

    An excellent blog and series of comments.

    I also suffer migraines, since puberty - probably inherited from my mother. For many years now, mine have tended to be in a cluster each year, every few days for a couple of weeks. The symptoms are much as other people have described; these days it tends to be the visual disturbances (to the extent of being maybe 40% blinded - so no driving) for up to an hour then, usually, a moderate headache and general fuzziness for the rest of the day. Occasionally I'll still get the full head-splitting nausea-inducing headache for ~6 hours, diminishing over a couple of days, but fortunately that's now rare (it used to be the norm). I know a few triggers (cheese, citrus, bright light in one eye, trying to talk to people with a bright background e.g. window behind them) but the annual cluster usually has none of those as obvious causes. It's also hard to experiment with treatments and, especially, preventions (dietary, medicinal, lifestyle) because I never know if a change is effective or the cluster has stopped of its own accord! This year I started a daily dose of feverfew - I don't think anyone has suggested that here but it seems to help a lot of people. The cluster stopped just after I started it - but I still don't know if it was consequence or coincidence. However, I'm happy to run with that than the betablockers my GP suggested a few years ago (again, the cluster stopped before I'd even taken the prescription to the chemist).

    Impact on my work is fairly minimal and, fortunately, hasn't ever lead to any pressure from my managers. It does make me unwilling to undertake overseas travel unaccompanied though.

  66. Comment by Wendy posted on

    Thank you for writing this and making people aware of what we have to go through. As many of you have already said, people think its "just a bad headache". I don't work with anybody who suffers with migraines, so I'm sure people do not believe me. I tend to go quiet and am unable to concentrate on work and just seem to be in my own little world.
    I have only suffered with migraines for the last 8 years which happened to coincide with when I had my first epileptic seizure(which is now controlled). I take a concoction of medication and also a rescue medication. My neurologist has told me not to fight it and stay at work but to go home, easier said than done , especially when you are part time.
    I am unaware of what triggers my migraines as they can start shortly after getting out of bed, midway through the day or even just before I go to bed. The best thing for me is to go to bed. Unfortunately my son is now starting with them but at least I can understand what he is going through.

  67. Comment by Kaye posted on

    I suffer from headaches. Sometimes very severe headaches with nausea (that's what pain does to you). I have never had a migraine in my life - but if I have headaches that require me to take time off managers have invariably suggested they might be migraines - I always correct them because although I can be debilitated by a severe headache it is usually managed with pain relief - it's very different to a migraine.

  68. Comment by Rachel Ashelford posted on

    As so many others have said. Thank you for writing this. It's good to know I'm not alone and that migraines don't have to hold you back. I'm sure those that don't have them generally think we're making a fuss about a bad headache!

  69. Comment by Sarah Jeffery posted on

    I have suffered migraines from the age of 10 and thankfully they have reduced over the years due to good medication and particularly since going through the menopause! As previous comments have mentioned, one of the worst aspects is people's misunderstanding of the nature and cause of migraines and being given advise by non-sufferers when you have suffered for 49 years along with wry smiles which you know mean 'not that excuse again'.
    Also the point that constantly staring at a computer screen does not help and it's difficult to take a break (as you are supposed to) when you have a high workload.

    • Replies to Sarah Jeffery>

      Comment by Lorraine White posted on

      Sarah like you I have suffered since about the age of 10. Mine are hormonal and every 4 weeks I dreaded that time of the month - would the medication work? Sometimes it does if I take it in time and get an opportunity to lie quietly in a dark room for 30 minutes and other times it doesn't and the stress of worrying about how I will get through work I'm sure made things worse!
      Like you I felt almost embarrassed when it didn't work to tell my non migraine suffering colleagues that I had a migraine and had to go home early. I have tried really hard over the years to make up for early finishes by working extra hard on my non migraine days. But I'm 54 now and with the menopause in sight I've noticed that although when I get one they are even more severe (particularly the nausea and length of the migraine) they are becoming less frequent - 9 weeks since my last one! I really have to believe that when I'm through the menopause they will end - they did for my mum!

  70. Comment by ST posted on

    It is such a shame that those who suffer this debilitating disorder are penalised for suffering it, which in itself is often a trigger for further such incidents. This can often lead to staff member struggling in whilst suffering severe pain and worse to prevent from the threat of losing their jobs for having had more than five incidents of illness within a year.

  71. Comment by Sonia posted on

    All I can say is a huge thank you Zamila for bringing migraines into the spotlight!!!!! - pardon the pun. It practically mirrors my own experiences as I too have severe migraines which have a huge impact upon my life - both at work and at home. I have had colleagues and friends alike think "oh it's just a headache" but if you have never had a migraine before it can be difficult to understand or imagine the way in which it affects you and/or stops you from doing normal day to day activities. After years of trying different Triptans with varying results, I took the huge step of having 30 plus Botox injections every 12 weeks in my head, neck and shoulders. All I can say is it has worked for me and has greatly reduced the number of migraines I now have and their severity. Don't get me wrong I do still have severe migraines that stop me in my tracks but along with the Botox, Triptans, regular deep tissue massage and acupuncture I have found a new lease of life. A big personal thank you to Zamila for highlighting what we actually go through when an attack happens and it's after effects.

  72. Comment by Philomena posted on

    Thank you Zamila for highlighting and sharing the dreadful suffering you experience with Migraines. Thank you too Marcus for your understanding. Hopefully, both will bring the extremes migraines can have on those who suffer them to the attention of others who suffer from them and those who supervise those stricken by them. My experiences from school and early employments were not so great, especially when I fainted...mine were also hereditary from my dear Mum and menstrual cycle. I couldn't wait to leave my mixed-sex school after, during our Religious studies, the teacher asked the class what the Pope would think of me being on the pill!! Thank heavens for modern medicine. Thanks too to people like Zamila having the courage to share her experiences and get this out in the open.

  73. Comment by Gary Roberts posted on

    Zamila, I empathise with you as a migraine sufferer. I recently wrote about migraine on the DWP Working Well Together Health and Wellbeing Group site in order to raise awareness of this debilitating condition.

  74. Comment by Susan Mason posted on

    My headaches are exactly as Zamila described. After suffering for many years my Doctor suggested trying Propranolol. Even though it is a beta blocker for some reason it can help with migraine. I have now been taken this for a number of years and the difference has been huge. I still get the headaches but the severity of pain has reduced by about 90% which means I can function normally and I rarely get a severe headache. Thank you for taking the time to write this article.

  75. Comment by Joanne posted on

    I have had migraines all of my life, did you know that it is a recognised medical condition and if you should need an occupational therapy referral because of it, or because of your sickness record, you could benefit with some reasonable adjustments. I know I have in the past. I have received an uplift on my sickness triggers and a recognition that if I need to go home urgently because of the need to be sick, I can go without the need of a long explanation and apology. Don't be afraid of a referral as it is an opportunity to document your disability and will help you and your line manager to manage your attacks.

  76. Comment by Danny Harris posted on

  77. Comment by Alison posted on

    Thank you Zamila to bringing this subject to the forefront . I have recently been diagnosed with chronic migraines, I say recently as it has been only 2 and a half years and after reading some of the comments above you all seem to have suffered for a lot longer. I do count myself lucky as although I am in constant pain say 7/8 which is manageable, I can get up and come to work I have seen many of my claimants and read many stories where people can not see when they have an attack, have fits, vomit (that on occasion is me). I never realised how wide spread it is I too thought 'its just a headache' until you cant focus due to the pain and it feels like your head is in a vice constantly.