Tee's story in the Daily Mail - My 'stroke' was a migraine that lasted for TWO YEARS

Here is my personnel story published in the Daily Mail today..... Tee

By HELEN CARROLL
Last updated at 12:22 AM on 15th November 2011

Hours after giving birth to twin daughters, Tracey Wilson should have been celebrating one of the happiest days of her life.

Instead the marketing manager from Whitstable, Kent, found herself apparently suffering a stroke — she couldn’t speak without slurring her words, was dribbling uncontrollably and was paralysed from head to toe on her left side.

‘At first, I felt too confused to worry and just wanted to sleep,’ says Tracey.

Tracey Wilson and her husband Tom. Hours after giving birth to twin daughters, she found herself apparently suffering from a stroke

‘But as the hours ticked by and I still couldn’t move, the panic rose. More terrifying, it was hard to make myself understood.’

The doctors told Tracey she’d had a stroke and would gradually get better. But her symptoms — which included a drooping face and permanent headache — didn’t improve.

Though she was discharged from hospital after eight days, Tracey spent two years bedridden in a darkened room because of the constant head pain.

‘My husband Tom had to look after our four children. I could only drag myself along the floor to the loo,’ she says.

The couple have two sons, Alexander, then five, and Joseph, three, as well as the newborn twins Georgia and Charlotte.

‘It was scary for my family and me,’ says Tracey.

‘We didn’t know what was wrong or whether I’d ever be well again. I was worried I had a brain tumour or some other fatal illness.’

In fact, Tracey didn’t have a life-threatening condition, but it took two-and-a-half years before she discovered the cause of her symptoms: an extreme form of migraine called hemiplegic migraine.

It took two-and-a-half years before Tracey discovered the cause of her symptoms: An extreme form of migraine called hemiplegic migraine

An estimated 20 per cent of women and 10 per cent of men in Britain experience migraine, with more than a third suffering an ‘aura’ — warning symptoms that occur 15 minutes before a migraine and commonly include slight speech or visual disturbances.

For those affected by hemiplegic migraines — an estimated 8,000 to 10,000 people — the aura takes the form of a stroke-like paralysis down one side of the body.

This can last from a few minutes to several months, though in most cases will clear in a few days, says Dr Andrew Dowson, director of headache services at London’s King’s College Hospital.

‘Many migraine patients experience numbness as part of their aura, but with hemiplegic migraine, one half of the body feels paralysed. Patients think they’re having a stroke.’

While it’s not clear what causes migraine, with a hemiplegic migraine there’s a problem with the way the nerves communicate with each other at the start of an attack, causing the paralysis.

Hemiplegic migraine can strike without warning in anyone who, like Tracey, has suffered regular migraines. One possible trigger is hormonal changes linked to pregnancy or the menopause, Tracey’s condition developed after giving birth to the twins by Caesarean section in May 2006.

‘Before the girls were born I had a big job in the City of London,’ she says.

‘To go from that to being unable to pick up my babies or care for my sons was distressing. It also meant Tom could no longer play an active role in the property business he’d worked so hard to establish.’

She saw two neurologists, who both diagnosed a stroke.

‘But Tom became so concerned I wasn’t getting better that he organised, through our private health insurance company, for me to see a top neurologist.’

In early 2009, Tracey was referred to Professor Peter Goadsby at the National Hospital of Neurology, who diagnosed hemiplegic migraine.

‘Though my symptoms were grim, discovering it was all down to migraine rather than a tumour was a relief,’ says Tracey.

‘I had no idea migraine symptoms could be so severe or last so long.

‘Professor Goadsby explained I had developed a condition called status migrainous, which meant I had hemiplegic migraine 24 hours a day, seven days a week — one didn’t end before the next began.

An estimated 8,000 to 10,000 people are affected by hemiplegic migraines ‘Though I’d had classic migraines since I was 13, it was the first time I’d heard of hemiplegic migraines or status migrainous.’

Tracey has asked four neurologists what might have triggered her status migrainous and has been told different things.

‘One said that having surgery to deliver the babies could have been an issue while others thought it was more likely due to my body’s response to having double the pregnancy hormones while carrying twins.’

Looking back, Tracey realises she suffered her first hemiplegic migraine while modelling on a catwalk, aged 18. Her left side suddenly went numb and she had the sensation of having stepped outside her own body.

It passed within a day or two and she didn’t experience anything similar for ten years.

There were three further episodes over the next five years, each lasting a couple of days. However, as there was no severe head pain, doctors did not identify these attacks as part of Tracey’s migraine condition.

Treatment for hemiplegic migraines is the same as with other migraine: avoiding triggers (these can include stress, noise, smells and too little or too much sleep), taking preventative drugs, as well as medication during an attack.

Some migraine treatments work by constricting the blood vessels (this is because migraines are thought to be linked to the blood vessels dilating).

However, doctors limit the use of these drugs in hemiplegic migraine patients because of the risk of stroke.
Tracey’s hemiplegic migraines are so frequent she was only able to identify when one attack ended and another began about eight months after her diagnosis.

‘For years they were overlapping and it was only when they began to slow down a bit, with the help of medication, that I could feel a beginning and an end to them,’ says Tracey, 41.

‘Even so, I’ve had only three symptom-free days — with no headache or numbness — in more than five years.’
The paralysis is no longer constant, though it still strikes several times a week.

Tracey has been prescribed a variety of preventative treatments over the past three years including beta-blockers, but without great effect.

She is taking part in a Botox trial where regular injections of the muscle-paralysing Botulinum toxin are injected into her forehead, shoulders and neck.

Not all doctors are convinced of its effectiveness, but Botox is thought to work on the sensory nerves in the scalp, head and neck, preventing changes in the brain that trigger migraines.

Tracey says there has been some minor improvement, with slightly longer gaps between attacks.

Meanwhile, Tom’s devotion to his wife and family was recognised when he was named Carer Of The Year at the Migraine Heroes Healthcare Awards, organised by the charity Migraine Action.

‘Tom and I have been married for 23 years and, as the older of the two — he’s 64 — I think he imagined I would end up taking care of him,’ says Tracey.

But there are so many days when I have to go to bed and Tom takes over. I don’t know how I would survive without him.

‘But the worst of it is not being well enough to be a fully hands-on mother to my children.
‘I felt sad for days after overhearing Alexander tell a friend that if he could have one wish granted it would be for his Mummy not to have migraines.’

Tracey has set up a website forum for chronic migraine sufferers: www.migrainetalk.co.uk.
Migraine Action helpline: 0116 275 8317 ; www.migraine.org.uk


Read more: http://www.dailymail.co.uk/health/article-2061529/My-stroke-migraine-lasted-TWO-YEARS.

Tee;
I am so glad to read your story and know it was published for others to see. It pains me to understand what you have lived with these last years, and know as a fellow mom, all you want to be to your children and have not been able to be. It took a lot of courage to let these things be printed , especially if you are as private in personal life as I am. It is one thing to put your experiences on a message board and another to be posted in the newspaper. God bless you for all you are doing with this website, and letting others know they are not alone in this awful struggle. Knowing full well how scary and shocking it is to go through one of these HMs, not having a doctor who can properly diagnose it early on, or help you know what to do about it, is horrible enough. To live with it for as long and as debilitating as you have is another. What a wonderful husband you have, to have carried your family and you as he did. One can only imagine what it was like for all a family to endure such trials, for a mom who can't nuture her children as she desires, to lose your job, your income and your husband to leave his work so he can care for his family the way he has done. To me, the remarkable thing is that instead of wallowing in your pain with pitty, you became constructive with your experiences in order to help others. God only knows how you have pulled yourself along to build this website / forum and manage it as you have while dealing with all that has been on your plate. I can say this, because I know what this forum meant to me when I found it after my recent experiences, pain, fear and feeling so alone. Further more your personal touch, of writing each member as you have done, and sharing your courage, wisdom, experiences and genuine concern is exemplary and proof of a job well done. As you pointed out in your email message, there has been a great response to your article and many new people have joined this site. It is my belief this is just the tip of the iceberg and you will continue to see a great growth of fellow HMers as this information spreads through and beyond the UK. Tee, there is nothing greater than when we bend down and lift others up. Doing acts of kindness and service to others is the calling of Angels and while those who truly serve, do not seek not for themselves, I do believe in service we find the greatest medicine for our own needs as well. You my dear, are a true living Angel and most deserving of many rich and wonderful blessings. Hopefully your children and you, will have a time when you will feel well, can play and enjoy them, and be all the great things you have desired in your heart to give to them. I know that while you have sacrificed a great deal, that these things have not been in vain and someday we each will understand the burdens we have been given to carry. Thanks so much for all you have given and for sharing your story. Your forum friend from the USA, Jerri

Oh Jerri - thank you so much - you made me feel very humble and brought a tear to my eye.

I do believe that things happen for a reason - and I cannot say I have always been this optimistic about migraine - I have had my time at the bottom But when down there the only way is up.... and once you have hit rock bottom you gain a lot of empathy for others - my aim is not only to better manage my own migraines - but to help others to do so too - even if that is just to give a hug or hold a hand for a while............... this is such an underestimated illness........ general public knowledge is either naive or non existent and if this forum helps only one person - its has been worth it............... on a personal note I have also learnt loads from talking...... and since there is no cure 'yet' I do feel we all can still learn from the experiences of others.

So thank you - all of you.

But THANK YOU Jerri - you just made those days when I sit here with a banging head worth it

Hi Im so sorry to hear you are suffering so much I too have the same type of migraines and have been admitted to hospital twice with stroke! they last about a week and the facial droop with the last one lasted 10 days I thought it would never go. I am now taking drugs for epilepsy after seeing a neurologist which I am told are very good for this type of migraine and touch wood I havent had any since! I usually get milder ones once or twice a week and I have been alright. I will keep you posted hopefully these will be the cure and hopefully the right treatment will be found for you soon

Love Jennie

Hi Jennie and welcome

So pleased to read you have found a drug that works