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The City of London Migraine Clinic [Sep. 11th, 2009|12:19 am]
erinnorman
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Several weeks ago while sitting in my neurologist’s office I mentioned this project of featuring a different charity each week. He perked up, “Do the City of London Migraine Clinic!” then he quickly clarified he was biased as he is on their board. I am not a patient of the clinic, nor do I live in London, but clearly I was happy to do a feature on migraines, considering my uncomfortable intimacy with the subject.

This week is Migraine Awareness Week so it seems particularly apt that I write about a clinic whose sole aim is to improve the lives of those who suffer from migraine and cluster headache.

There is a huge amount of misconception out there about migraine. Some people get them and they might not be “too bad” i.e. they can still operate a normal life 80% of the time. They may have a week of utter agony 2 or 3 times a year with little support or treatment. But for some of us migraines are crippling all of the time. I clearly remember being a young girl in bed with a splitting, terrifying headache, unable to stop whimpering because a sliver of light was coming under my bedroom door from the hallway. I had a long time-period in my teens without migraine affecting me too badly, then when I reached my 20’s they appeared with a vengeance. They were knife wielding, life pillaging, ravaging attacks that made my husband’s face turn white with fear for the first two years of our marriage. Now I very rarely have a day without one, at least for some portion of the day. I have read this is impossible, that there have to be larger gaps between attacks, but I beg to differ. I can assure you that myself, my husband, son, and all my family and friends can not recall a day I did not begrudgingly admit to having one if asked.

There have been hundreds of times I have been rocking back and forth on my bed, positive that this time, I was going to die, this time, the human body would not be able to withstand this level of pain. Surely the cut-off must exist somewhere. I am now so jaded from years of constant pain that at its worst I tend to just retreat to a very quiet ball. Most days I keep going, looking after my child, playing skittles in the hallway, grabbing a few quiet moments when I can, taking whatever medication I can, until Matthew gets home from work. At which point, I take to bed, often not surfacing until the next day when he leaves for work again. On nights when I have to work I use the same adrenaline I use to look after my son to get my work done. There is usually one day every month that I am unable to exercise this control over my body.

I avoid talking about migraines to all but those closest to me, and even then I am sometimes hesitant. If I were totally honest about it, it would not make for upbeat social conversation and no one wants to be a wet blanket. There is a huge stigma attached to migraine. You have a role to play when you suffer a chronic health condition that garners little sympathy; it is that of the aforementioned wet blanket or the whinger. I am far more likely to moan about a head cold than I am a migraine – I have suffered pain levels that could fell a lumberjack with no one but Matthew the wiser. One of the hardest parts of migraine for me is the mental incapacity that comes with an attack. I often have slurred speech, a slight stutter, I make very silly mistakes, and my physical co-ordination is abysmal. I have a reputation in some circles as being a bit dim and hopeless; circumstances are such that I often see these people when an attack is coming on.

That is quite enough about me though – I have simply tried to explain the devastating effect that migraine can have on a person’s life. Each day of my life I have a list of things I have not managed to get done because I have spent time catering to the whims of my brain. For that reason, and for all other migraine and cluster headache sufferers, I am very grateful for the work The City of London Migraine Clinic does.

They have three key objectives; the first and most important to them is the treatment of their patients. Second is the research they conduct in the study and treatment of migraine and cluster headache, and third is the education of other healthcare professionals, such as GPs. Anyone may be seen by them; you can self refer or be referred by your GP. The City of London Migraine Clinic’s website is very helpful and informative, with many factsheets and tools such as diaries to help you keep track of your unique migraine cycles and triggers (and no, it isn’t necessarily chocolate and cheese, now I’m not the doctor I’m just tired of everyone telling me to stop eating chocolate and cheese!). I would strongly urge anyone who thinks they may be suffering from migraine or cluster headache to contact the clinic. The link to their website will be below this article, and their phone number is 0207 251 3322.

I spoke to Dr. Anne MacGregor, who was as easy to talk to as she is passionate about the healthcare she provides. Dr. MacGregor is Director of Clinical Research at The City of London Migraine Clinic.

EN: Do you struggle to raise sufficient funds because people assume you are funded through the NHS?

CLMC: Yes we do struggle to raise funds to support the clinic. Even when we explain that we are not in any way funded by the NHS, some people do not donate out of principle. They feel that the work we do should be included within the “free” healthcare system. However, many are very generous with their money, and often those with the least to give. When people access a service they are likely to be prepared to donate, when people only observe the service from the outside they are less inclined to make a donation.

EN: Why did you choose to specialise in migraine treatment?

CLMC: I first came to work at the clinic for what was supposed to be a 6 month “break”. I had a two year surgical rotation planned, and I deemed this a gentle quiet break before I got on with my “real” career. However when I began working with the patients suffering from migraine and cluster headache I became more intrigued by the conditions. The mentality at the time was that migraine was just a headache to get a long weekend off work, but that didn’t tally with the patients I had in front of me. The more I looked into it the less it measured up. At the time there were no drugs specifically designed for migraine or cluster headache treatment. I found I wanted to learn more about it. It was an odd discovery after having gone through 6 yrs of medical school that I had never realised the reason my mother disappeared to bed and we’d have to tiptoe around the house was that she’d had a migraine attack. I thought to myself, “This is an interesting challenge; I’d like to run with it.” 21 years later, and still, every piece of research we do throws up more questions. It is a fascinating subject.

EN: Severe pain affects every aspect of a person’s life; attendance at work, family relationships and mental health. It is however, something which is often pushed to the back burner, only taking over when it has finally crippled the individual. Do your patients report improvements in these areas of their lives after they have received some treatment and advice from you?

CLMC: Yes they certainly do. I recall getting a letter from the young daughter of a patent of mine saying “please can you help my mummy because she is sick all the time”. I then had another letter further down the line from the same family, saying they were so much happier and she was much better. “Weekend migraine” strikes down many men, and the overall impact on the family life and social life is huge. If I went back 20 years, we were much more clinical about what we asked, we never really asked about how migraine affected people’s lives. Now we ask, “What does migraine stop you from doing?” and we often hear answers such as, “I can’t make plans because it’s that time of the month and I’ll have a migraine”, or “I dread going on holiday because I always have a migraine the first 2 days away.” People experience a huge amount of guilt, especially mothers. They’re often sick and feeling like they are letting everyone down or not doing enough.

EN: The City of London Migraine Clinic is an active Research centre with an interest in migraine and cluster headache. How does the rest of the medical community benefit from the research you do?

CLMC: Well a rather easy example is Sumatriptan which we trialled in the late 1980’s as research drug. It is now available over the counter from pharmacies. There is a direct feed down from treatments in the clinic to treatments available to the general public. We do a lot of what are called Phase 2 clinical trials, which means testing the effectiveness and safety of drugs well before they reach the market so we are well at the forefront of migraine treatment. We learn from our patients, who are our best and most direct source of information and new techniques to try. We are constantly learning about better ways of managing the condition, coming away from the textbook to real life learning. Everything we learn goes in newsletters, factsheets and on our website. We provide online diaries and tools for people to use to help themselves. Everything we learn as a research centre we try to spread out to the broader community of healthcare professionals and patients.

As a clinic, we try to pick up the problems that are in a way obvious but not taken seriously enough. Take women’s menstrual migraines, for example. More than 50% of women who suffer from migraine report a link between migraine attacks and their menstrual cycle. In 1989 I approached a colleague and said I thought this required further study. She said, “Prove menstrual migraine doesn’t exist.” Well I proved it did exist, and further research led to the development of specific diagnostic criteria for menstrual migraine which was incorporated into the classification of headache disorders by the International Headache Society in 2004.

However our main objective is to provide treatment to those who are suffering from migraine. We would invite patients to take part in research but it is not a requirement for them to do so.

EN: What involvement do you have with other Migraine charities/organisations such as Migraine Action and The Migraine Trust?

CLMC: We work very closely with both of those organisations. I am a trustee of The Migraine Trust and a Member of the Medical Advisory Board of Migraine Action. The difference between them and us is that they provide information & support, whereas we are the only charity that actually treats and conducts research in the field of migraine and cluster headache.

EN: The world of treatment and research is continually moving, particularly relating to such a pervasive condition. What developments in migraine treatment are you currently working on?

CLMC: We are doing clinical trials for completely new types of drugs for acute and preventative medications. We are also looking into finding ways to better prevent migraine attacks without using drugs, including aerobic exercise. The most important thing we do is help people manage the condition in ways that are much more subtle than pharmaceutical solutions, such as educating people that dehydration is often a trigger for migraine. It is a very simple thing that many sufferers are unaware of, but can make a huge difference.

EN: Hope is a major player in the lives of those suffering. Do you foresee a time when the awfulness of migraine is a thing of the past?

CLMC: Well I already see times when the awfulness of migraine is a thing of the past when our patients tell us things are so much better for them. We get notes from patients saying how improved their lives are and that really makes our day. Will we ever “cure” migraine? No, I don’t think we ever will. I think migraine to an extent protects the individual from too much stimuli. An individual who suffers from migraine may react too sensitively to stimuli and your body will shut down like a power cut. It is over protectiveness of the brain. I’m not entirely sure it would be a good thing to shut that down as the body must be protecting us from something, just as pain from a sprained ankle stops us putting too much weight on it. What we want to do is help people get back in charge, have migraines, but not suffer as a consequence of it.
Migraine is still a hidden issue, like depression. People tend to be embarrassed or ashamed to admit how much they suffer. We need to be more open about it. There are many famous people and pillars of society who have migraine and cluster headache, but they won’t talk about it. They’re afraid it will make them look like they can’t get things done. But if they stood up and said “I have migraine, but it didn’t stop me getting where I am today” then we would start to get somewhere.

It never ceases to amaze me the number of people who have migraines but who don’t know the simplest things about their bodies. If you are hungry - eat, thirsty – drink. There are simple strategies that we have learnt and it would be great if we could just reach these people and teach them. It takes many people such a long time to even realise they have migraine. They may have intermittent attacks once or twice a year and put it down to food poisoning. People delay seeking treatment all the way down the line. There is a wonderful optimism in migraine sufferers, where they convince themselves they will never have another attack again. I would urge everyone who thinks they might have migraines, or knows someone who might, to do something about it. It doesn’t have to be about powerful drugs you take every day; it’s about managing to get your life back.

-

I’d like to thank Dr. Anne MacGregor for speaking to me so openly about the work that is done at The City of London Migraine Clinic, and Heather Sim, Chief Executive of the Clinic for her essential help in getting it all done.

The City of London Migraine Clinic
linkReply

Comments:
From: (Anonymous)
2009-09-12 02:58 pm (UTC)

Good stuff - thank you

Great article. Loads of interesting stuff I didn't know
(Reply) (Thread)
From: (Anonymous)
2009-09-13 08:26 am (UTC)

Thanks

As a patient at the City of London Migraine Clinic, I identify with most of what has been said. I was treating my chronic heaDaches and migraines with so many medicines, I did not know symptoms from side-effects. In the past year the clinic has helped me reduce medication which has resulted in a great improvement (thanks to the lack of side-effects). I would recommend the clinic to each and every migraine sufferer. It is a great place for support and advice! Thanks for all your work
(Reply) (Thread)
From: (Anonymous)
2009-09-24 06:22 am (UTC)

Thank you for having the strength

Thank you Erin,

For having the strength to put into words what I have been trying to explain and have written and rewritten in my mind several times but with a daily migraine for the last 3 years have been unable to express. I have suffered for 29 years (since I was 6). Missed 57 or more days of school a year when I was younger, under developed physically from excessive vomitting, loss of nutrients and lack of being able to eat. In the past 9 years had at least 8 extractions of my teeth due to stomach acid eroding my teeth from excessive vomitting. Still searching for a doctor that my insurance will pay for who specializes in migraines or at least won't give up because I don't respond to treatment. With the exception of you being able to work, your story could be my story. I just wanted to thank you again for giving me the ability to prove I am not the only one who suffers from daily migraines. I was just about to give up searching because so many people post they can work, go to school, etc.. including the medical sites that describe migraines as only occuring 3-4 times per month. I could probably live with that.

Your Fellow Daily Migraine Sufferer
(Reply) (Thread)
[User Picture]From: erinnorman
2009-09-24 07:11 am (UTC)

Re: Thank you for having the strength

I am really grateful you have had some comfort. I want to say though, I only work 4 hours 4 nights a week and I am now looking into stopping that and getting some financial help to do so as physically I am collapsing at a rate faster than I can quantify. I've managed this long from gruelling physical self abuse really which is inappropriate but I have felt there was no other solution to keep my family going as migraine doesnt get very much support. Or actually, any support at all! I no longer bounce back from anything anymore, colds, migraine, swine flu (LOL) you name it. Daily migraines have well and truly taken their toll on me.

I wish you the very best of luck. You mention insurance - are you not in the UK on the NHS?
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From: (Anonymous)
2010-05-12 06:49 am (UTC)

BOTOX The Big Lie For Migraine.

BOTOX The Big Lie For Migraine.
With the time, when you will know the truth about my migraine pressure points surgery, you will see the big lie about using Botox for migraine. And you will see how silly the idea of plastic surgery for migraine headaches.
Why silly? Because they think that the good results come from muscles removing while the truth is when they remove the muscles they remove with it the branches of extra cranial arteries that cause migraine headaches. Because of this they don’t have 100% very good results, while in my surgery I leave all muscles intact and I close the artery that cause migraine headaches and the results of my surgery 100% very good results.
So what you think silly or not?
I think they know and they cheat migraine patients.
Why they cheat?
Because they remove these muscle for years ago to plastic surgery reasons, so why only after my new migraine discovery that only extra cranial arteries causes all kinds of migraine headaches they noticed that migraine headaches become much better after removal of the head muscles. Even none medical person after my migraine discovery know that if we remove head muscles we will remove at the same time branches of extra cranial arteries so it's normal to have good results for migraine headaches.
They have to say the truth not to cheat about this reality.
Anyone can see how they cheat if he do my migraine pressure points test in time of migraine headaches.
www.alisultaneh.8m.com
www.thedoctorstv.com/migrainesurgery
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From: (Anonymous)
2010-05-17 07:27 pm (UTC)

Thank You Erin Norman

Thank you very much.
Please see my video how to do and to use my migraine pressure points devices that can make migraine headaches to stop within less than one minute:
http://medicalvideos.us/videos-1719-HOW-TO-DO-MIGRAINE-DEVICE

If you want I can send you some of my migraine devices to help you to do the devices and help migraine patients.
When I can I send my migraine devices for free to some migraine patients.
Best Wishes
Thank You
Ali Sultaneh

(Reply) (Thread)
[User Picture]From: erinnorman
2010-05-17 10:04 pm (UTC)

Re: Thank You Erin Norman

Thank you very much, I've watched your video, its most interesting. I'd be very grateful to try one of your devices if you don't mind sending one to me, please see my latest blog about what has happened with me http://bit.ly/dyR4H4 you can email me at senatorvass@gmail.com

(Reply) (Parent) (Thread)
From: (Anonymous)
2010-05-20 11:21 am (UTC)

Migraine devices

HI:
I will send the devices to you and I hope that you will be free of all that disturb you and return to the normal live.
I sent an e-mail to you.
When I can from time to time I send my migraine devices for free to migraine patients by DHL:
http://www.migrainepage.com/dcforum/discussion/24623.html
Now I will send to USA,( Florida, Georgia). And to London.
So 3 boxes each one has 3,5 KG of my migraine devices.
I hope that migraine patients can see my video and do my migraine devices better than I do.
I know that your life can be free of all kinds of headaches if you use my migraine devices in good way.
Best Wishes
Ali Sultaneh
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From: (Anonymous)
2010-07-06 09:58 pm (UTC)
Hi Erin,

I wondered how you got on with Dr Ali's device and how your migraines are now. I have them almost every day so I can empathise.
(Reply) (Thread)
From: (Anonymous)
2010-07-11 06:33 am (UTC)

I sent 5 kg of migraine devices

Hi:
I sent for free 5 Kg of my migrainedevices to this address in London. So you can contact Pen to get one.
Pen Ort
16 Downs Road,
DUNSTABLE
Beds,
LU5 4DD
England.

07724105134
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