Fighting Migraine Stigma

We speak to 29 year old Aimee Talbot, a solicitor by profession, who shares with us the difficulties she has faced as a migraine sufferer, but despite this she continues to fight!

 

"I have had tension headaches as a child and had daily chronic headache from the age of 13 to 14.  I began having migraines at the age of about 15.  I was diagnosed by my GP and saw a neurologist who said that they would probably go away as I grew up.  I had a migraine every month or so.  My migraines got much worse about 4 years ago.  By February 2015, I had so many migraines that I only had 2 pain free days a month.  By that point, I had been prescribed naratriptan and cocodamol.  I was concerned about medication overuse headache, so I tried hard to limit my triptan use.  In order to keep working, I used to take a lot of cocodamol - probably on 3 or more days a week.  I had asked my GP, a neurologist and a pain specialist whether I was taking too much cocodamol, but they all assured me that I was not. 

I went to a seminar organised by Migraine Action in March 2015 (I think).  I asked one of the specialist speakers about medication overuse headache, and he said it was almost certain that I had medication overuse headache given the amount of cocodamol I
was taking.  I immediately cut down my use of cocodamol and the effect was almost instant.  I am now down to 2 to 3 migraines a week, which is a massive improvement.  The seminar literally changed my life.  In August 2016, I decided to stop taking the mini pill.  I had asked GPs and a neurologist whether the mini pill would have any effect on my migraines and was told that the mini pill (aka the progesterone only pill) as opposed to the combined pill was safe for use in migraneurs.  However, I remained concerned that my migraines had got much worse since I started taking the mini pill, so I stopped taking it.  This also made a big difference and I now go through periods, sometimes of up to 2 weeks, without a migraine. 

 I have found it very difficult to adapt to living with migraine.  The main problems were (1) accepting that I have a chronic neurological disease without any cure; (2) the fact that many doctors are not very good at dealing with migraine; and (3) the amount of stigma which still surrounds this disease.

 I didn’t realise when I was first diagnosed that there was no cure for migraine and that it was a neurological disease.  I experience a range of symptoms prior to getting a migraine.  I get a hot flush, I perceive the world differently, light hurts, noise hurts and I feel sick.  Sometimes I find it difficult to communicate and cannot find the works.  I find this incredibly embarrassing and scary and upsetting.  During the pain phase, I am nauseous and the pain is so intense I have sometimes wished for death.  The worst migraines are the ones where I vomit.  In that case, I can’t keep anything down - even water - and so can’t do anything about the pain because I instantly throw up any painkillers I take before they are absorbed.  When this happens, I usually miss work for 2 to 3 days and have to call someone to come and be with me. On a number of occasions, I have been to A&E as I have read that in America, doctors can give you injections to stop the pain. 

Even though I know that a migraine is not a life threatening emergency, sometimes the pain is so intense, I can’t tolerate it any more and will do anything for some relief. 

Each time that I have been to A&E, I have had to wait a long time and have been sent away - sometimes with tablets, sometimes with nothing.  I often get the impression that the doctors think I am some kind of drug addict looking for some free drugs, even though I often have my dad with me and am obviously in a lot of pain.

It is not only A&E doctors that do not seem to know how to deal with migraineurs.  I have probably seen 20 GPs in the past four years and I have still not found one who appears to really care.  I understand that managing a long term condition like migraine is difficult, but every time I see a new doctor, they appear not to have read my notes.  I’ve seen several neurologists, including a private neurologist, but as soon as they have diagnosed me, they seem to feel as though their job is done.  The best doctors I have ever seen have been pain specialists as they seem to really understand living with migraine.  Recently I saw Dr Krishna at The Chesterfield in Bristol.  He was very knowledgeable about migraine and put me on the waiting list for botox.  I am lucky enough to have private medical insurance through work.  After I saw the private neurologist and was diagnosed, they refused to fund any more treatment as they do not fund monitoring of long term conditions with no cure.  Luckily, they have agreed to pay for the first two botox treatments (after intervention from my boss, I suspect).  I am optimistic about the botox as at the Migraine Action seminar that I attended, there were people weeping and saying how botox had changed their life.  I hope that that happens for me.  I am very afraid of the botox treatment as I have a very bad needle allergy, but I will try anything to get better. 

 I love my job so much and it breaks my heart that I cannot work the same hours as my colleagues.  I am constantly afraid that colleagues and management think that I am not committed to the job and not a hard worker and I am concerned that my promotion prospects will be curtailed because of this disease. 

I have to say that my employer has been extremely understanding and reassuring - I could not hope for a better boss and better employers.  They have been so supportive; unlike my old firm.  At my old firm, I could not come in one day because of migraine and the senior partner telephoned me and literally shouted down the phone at me that not coming to work was a “dereliction of duty” and that I must come to work immediately.  I tried to explain that, even if I could get to work (I obviously cannot drive with a migraine), I would not be able to do anything when I got there.  He insisted that I come in immediately and suggested I get a cab for the 45 minute journey.  That company refused to pay me on the basis that the fact that I had “odd days” off meant that it was likely that I was faking an illness.  My current employer is the opposite and I am so grateful for that.

 Sometimes I wear sunglasses to work because of the fluorescent lights, but I feel self conscious as people often comment on it.  I try so hard to try and hide the amount of pain that I am in and it hurts me to know that people judge me anyway.  Someone said to me the other day that it was "nice of me to turn up" at work after a 3 day absence with a migraine. 

 I’m trying to live my life, but it does hurt me that I can’t live the same life as other people.  I cannot drink alcohol as it immediately causes a migraine and I do feel that this causes me to miss out on some of the bonding that people my age do.  I can’t go anywhere where there are bright lights or loud noises, so I rarely go out at night.  I try to avoid making plans because I feel bad when I have to cancel them.  I lost my best friend a few years back when she accused me of pretending that I had a migraine in order to get out of seeing her that day.  I was so hurt that my best friend did not believe me that I have not spoken to her since.  That is one of the worst things about this illness - its so easy for people who don’t suffer from migraines to pretend that they have a migraine in order to “pull a sicky”.  I cannot exercise because it triggers a migraine, which makes me very sad as I enjoyed exercising - especially swimming - and I have gained weight, which I know does not help with migraines. It also does not help my self confidence.

At present, I am having 2-3 migraines a week, but I am in pain every day as my neck is always painful.  I do not take anything for that because I am afraid of medication overuse headache.  Now, when I get a migraine, I take naratripan and metaclopramide.  In a crisis, I take cocodamol or codeine, but this is limited to every few months as I am conscious that opiates are not good for migraine.  I have tried a lot of prophylactic medication (propranolol, atenolol, topiramate, gabapentin, amitriptyline), but I had unbearable side effects, such as cognitive impairment.  I am currently taking antidepressants as I struggle to cope with this disease.  One thing that I find incredibly helpful is the migraine support group on Facebook.  It can feel incredibly lonely as there is no one else in my life that has chronic migraine, so it can feel like no one understands.  Connecting with others facing the same challenges does make me feel better. Someone at work commented once that they don’t know how I get out of bed every day - but what is the alternative? 

If I quit life, the disease would have won.

Migraine Awareness Week 2017 focuses on the reality of living with this neurological condition. Share your migraine experiences and get involved to help destroy migraine misconceptions. Until there is a cure, we are here to support all those affected. Until there is a cure, we are here to ensure all affected receive the help and respect they deserve.







 

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