Hemiplegic Migraine Has Cost Me My Job & Career

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Hi Fellow HM sufferers

I would just like to share with you my own personal experience with HM & how it has destroyed my livelihood and career in the hope that it doesn't happen to you.

I'e suffered from Familial Hemiplegic Migraine Type 2, since early childhood, and during those early years it truly was a terrifying experience that no Doctor had an answer for. ( I was born in 1965).

The only insight I had, was that my Father had suffered the lifelong condition that he was told, was called 'Neurasthenia.

I suffer from all the usual stroke type symptoms, slurred speech, loss, difficulty walking, vomiting, you know the score. (current meds, Gabapentin, diazepam, paracetamol & codeine 30/500, and 600mg ibuprofen).(btw I also have a PFO which I am told many migraine suffers have)

I suffer from Basilar headaches almost every day but I can cope with those whilst on the meds, I only suffer around 2-4 HM attacks a year, so I guess I'm one of the lucky ones compared to some of you and I truly do feel for you.

Back to my story, I joined my local Police Force as a young officer in 1990 despite telling them I suffered with Migraines. Over the years all was well, I married, had two gorgeous children and my career was moving forward. In the UK this tends to be a job for life.

I suffered the occasional HM attack at work which frightened the hell out of my co workers but they soon learnt that this was just a part of my life. I always felt a little foggy for days afterwards but this never affected my work and I went on to earn several commendations for my service. I was also trained as a Tutor Constable and I would teach new recruits the job.

I treated people as I would expect to be treated myself, with courtesy and fairness, not exactly how everyone else treated people. The stress of the job was difficult at times compounded by my wife being sexually assaulted by a fellow officer who I will not name, myself being assaulted twice by other officers including one sergeant who took great pleasure in kneeing me in the face. All were swept under the carpet and no action taken against those concerned. Things went from bad to worse as my wife now hated my job and what I stood for so much that she had a breakdown along with our marriage. She filed for divorce and I lost my house and two gorgeous young Daughters. The stress continued and I broke down in tears at work not knowing why I was crying. I even tried to drive head on into a truck on the way home but the truck managed to drive round me.

The stress caused my migraines to increase in frequency to around one a month.

In 2002 I also suffered an injury to my lower back (sacro joint ) but instead of physio I was moved to a different station and placed behind a desk in the divisional control room, taking calls and sending officers to jobs via the computer system. During my time there I was often one of the highest performing officers handling more calls than most of the other 5 officers present with me but my attendance record had started to suffer due to my migraines combined with the previous times I had been off with stress.

I remained in the control room for two years and my stress management improved. However, I still recall one particular day whilst at my desk, my Vision went, my face drooped, speech became slurred and I couldn't stand. All the usual symptoms of a HM attack. I tried to tell the duty inspector and colleagues that I was ok but of course my words made no sense and I was rushed to Hospital in an Ambulance. After lumbar punctures and scans I was discharged with the dual diagnosis of HM or TIA's they couldn't really decide.

Back at the station I was called into a meeting by my Sergeant (who had the week before shouted at me and told me to pull myself together, regarding my stress / illness record), he told me that the Force was planning to retire me on ill health grounds as it was cheaper to pay a civilian to do my current job, than it was to pay me. He also told me the force was trying to rush it through before significant changes were made to the disability act, making it harder to get rid of me.

I was so shocked. I told him I didn't want to retire but he told me the decision was already made. My union the Police Federation offered no help and just a few months later I was given a small ill health pension and shown the door.

Shortly after I received a document from the Force Surgeon citing my disability as Hemiplegic Migraine. The grounds were that following an attack I could suffer temporary memory loss that could put the public at risk and that this was considered to be a permanent condition.

That was it, no career, no job, no wife, no family and just a tiny income. In fact my finances were now so bad I had to move back in with my elderly parents. But the decision was made and I was told that there was nothing that I could do about it. Life had now changed beyond belief due to my having Hemiplegic Migraines that had in the past not affected my work.

When applying for new jobs I had to say why I left my last employment but once I said I was medically pensioned no offers came my way. I then started doing gardening jobs 7 days a week just to survive and I still am to this day ten years later.

It was only during a visit to my GP a few weeks back that I asked him what he had sent to the Force Surgeon that caused my retirement, as I do recall the surgeon wanted access to my GP which I gave.

I was astounded to hear that despite my always believing otherwise, my Doctor had stated that I was fit for duty in my role as Police Officer and that my HM did not affect my work to any significant degree. In other words the Police Service did not have any recorded medical grounds to retire me.

I have also recently found out that under the Disability Discrimination act 1995,

It is unlawful for an employer to discriminate against a disabled person whom he employs—

(d)by dismissing him, or subjecting him to any other detriment.

I do now wonder if I have a case against my former employers but on the other hand I am so used to everything being hushed up and swept away behind closed doors that I wonder if I would even stand a chance. Yet in reality I have lost out on 25 years of wages and pension contributions had I still been working.

The disability act states it's 'Unlawful to Discriminate', but who Polices the Police, from my past experience, no one does.

I wonder if anyone else has been affected at work with HM?

Regards and thanks for reading

Marcos

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5 Replies

  • Posted

    Hi Marcos

    Well I can totally sympethise with you I'm a 38 ur old male . I have suffered from headaches for quite a while but still managed life relatively normal until last year I had worked for myself having a catering buisness for 6 yrs and had really started to struggle due to a bad back I have a mild form of spinabifida it hasn't bothered me till the last 2yrs or so ! . A curvature in my spine life was all normal , anyway last October I got a abscess in my mouth went to the dentist got treatment a couple of days later collapsed was rushed to hospital was blind in right eye parylised all right side it was terrible I had c.t MRI blood X-ray even lumber puncture which I might add cause of my spine caused horrendous problems and pain !!! . I was like this for 3 weeks the doctors didn't know what was up until a specialist from another hospital came and straight away diagnosed hm they treated me and I got home. After 4 weeks , since then I have been so ill daily head aches sometimes really bad infact I have just spent the last week stuck in bed more or less I can't drive now at all had to stop working (bearing in mind I have worked the last 20 years) . I hate it all , I can't walk far at all with my spine which in turn starts my head off . I can't go in a car far as I get pain and looking out the window starts me off , my eyesight has deteriated massively , stress is the worst for starting a attack off for me ! . I take 300mg gabapentin x4 daily morphine sulphate 30mg x2 daily oramorph for my back naproxen 2 a day paracetamol 8 a day , 900 aspirin as needed . Bearing in mind I went gym was a match fisherman was very social with friends family . I no longer drink alcohol at all which doesn't bother me I hardley go out . I have applied for disability and I am still waiting !!! Do not even know if I will be accepted here in the uk it is a joke. Luckily I have a great and loving family really it has helped .but I am fed up of being ill daily and life being such a struggle plus the medication makes me constantly tired . I also when I'm having a attack have been told it's like I'm on drugs or drunk slurring and my movement .

    Many thanks andy

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    • Posted

      Hi fellow sufferers,

      I am so sorry that you all are suffering as you do, I am writing to share that I can feel & understand your pain & frustration.

      I used to work all my life & many times have worked many jobs as a single mom.(nothing great, just was always a work horse!!)

      The 1st time that I had what was claimed as a Tia from ER, was in 2005 & again 2008, & 2012 was diagnosed with hemiplegic migraines. Since then it became more frequent & more severe. That costed me from being able to do any work of any kind.

      I have recently had neck Surgery c3 through c7 & was hoping that would eliminate the horrific & scary episodes that caused me to not be able to perform my work duties or drive & make decisions, or think properly. (I have had all symptoms of ms , but mri & cat scans , & eeg tests don't reveal any answers.) This effects my ability to speak, understand at times, & only at times do I have the ability to attend family get togethers. (I cannot even do things I enjoy. ) Starting & finishing simple projects & daily chores are a complete struggle, that nobody in my family can understand. I only take my 1 pain pill per day, cut in half. (It is a problem even getting, because so many people abuse those pills) ~ I have taken just about every kind of antisezure medications, & none have prevented me from having the chronic & debilitating pain I experience, or the scary episodes. If I was an animal, I would be put down, cuz I am absolutely worthless. Nobody can understand the life that is so unbearable at times. However, I believe that those who suffer can .

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  • Posted

    Wow Andy, it's when I read other peoples own personal stories that it really does make me feel humble when I look back at my own, thank you for sharing yours.

    I can understand your pain to some degree as since leaving the force aged 38 I was involved in a bad car accident and I now also suffer from thecal Compression of the spine. This is what causes my daily headaches rather than my HM.

    Driving is a real issue as just turning my head from side to side causes my neck muscles to cramp up and bang the huge headaches hit. The muscles around my head, neck and shoulders always feel bruised and sore and to be honest, some days I'm in so much pain I feel like giving up yet this is minor compared to spinabifida which surely must cause pain along your entire spine.

    I think the hard part if we take the daily pain out of the equation is the fact that these conditions have taken the working element away from our lives. We are no longer productive and self earning to a large degree due to HM and other conditions that each of us may suffer over and above the debilitating effects of HM.

    I have read in various places on the internet that HM is in itself a disability yet it seems that many local authorities do not consider it to be so which is a shame and I really can't understand why your disability hasn't been granted yet. Many HM suffers still want to work unlike vast portions of the community who would prefer to slob around all day on benefits. For many of us disability allowances are a necessity rather than a accessory.

    As for the medication many of us take, I think we must all rattle when we walk lol I have taken morphine but oddly it did nothing for me. One of the most effective tablets for the muscle pain and cramps is good old ibuprofen 600mg but as with many of these pills the knock on effect can be stomach issues like bloating, wind, acid etc and it was only last year that my doctors prescribed me Omeprazole which coats the stomach in a protective film to stop the various pills from burning a hole through the stomach wall.

    As for the HM attacks themselves, they truly do fill me with dread as I'm sure they do to others. My biggest fear is that during one of these episodes and whilst the blood vessels in our brains are so massively constricted, that all it takes is one tiny clot and we can have a stroke.

    Many people are advised to take daily doses of aspirin to prevent this but the other sad fact with HM is that many doctors and even emergency rooms have never seen it before and haven't a clue what to do.

    One neurologist told me that whenever a HM patient has an attack they should attend hospital asap or even by ambulance and be treated as a stroke patient by the medical staff, simply to prevent a full stroke from occurring. Whilst this would be fine for us in the UK with a free health service, this surely would be way too expensive for the average American citizen to do on the cost basis alone.

    Anyway, I have rambled and digressed

    I wish you well:0)

    Marcos

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  • Posted

    Sorry to hear what has happened to you. Terrible.

    I lost my job in finance as I couldnt work 65-75 hours a week.

    I was slurrng my seech during a migraine, I was labled a drinker. Eventually I was asked to leave. Lost my house, my car, my independence. Some "friends" thought I had a drug problem. I did...couldnt find one that worked!!!

    10 years later I've rebuilt my life with my wife of 20 years who stuck by my side.

    Have faith.

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  • Posted

    Hi Marcos

    I also suffer with Migraines and have done so since my early 20's then starting with HM in my 30's I worked for DWP and just after my 40th birthday I went into work one day and I I had a slight headache but felt unuasually different I felt as if my head was going to burst the room was fuzzy and my left arm was tingling and had pi ns a d needles then I collapsed on the floor and had the first of many seizures to follow.

    I was taken to our local hospital Resus department where I came to momentarily thdn had a further seizure thiz continued and I was transferred to a specialist Neurological hospital fo further treatment and investigation. The outcome was I had had a bleed on the brain brougbt on by sn hemiplegic migraine. I lost the use of the left side of my body and we t into rehabilitation.

    My employer like yours wanted to finish me on ill health but occupational health did not agree. The office was due to close and redu dancys were being offered so they were told to offfer me redundancy. I had won awards for my work. However the week before christmas I received a letter saying my empmoyment with DWP had been terminated. I took them to an employment tri bunal as it was my understanding that it was illegal to sack someone whilst they were signed medically unfit for work.

    However, I lost the head of the tribu nal ruled in tbeir favour!!!!

    Prior to the onset of the Migraine my marriage had come to a n end after 19 years as I caugbt him witb another woman and I lost 4 members of my family all withi 7 weeks of each other.

    I have now come through this and hope you have too alm the best Marco and happy 2018.

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