‘I just want a normal life’
Botox is well-known as an anti-wrinkle treatment, helping the rich and famous in their attempts to roll back the years, but it has medical uses too, one of which is treating chronic migraine. Sheena Grant reports
IT’S three decades since Mandy Langfield had her first migraine and they’ve got steadily worse over the years. These days she’s in virtually constant pain.
She takes 14 tablets daily to try to control the condition but the only real relief she’s found came from a somewhat unlikely source – Botox injections.
The effects were nothing short of miraculous but unfortunately lasted only a few weeks. Mandy has had the treatment twice in the past two-and-a-half years, both times for free as part of a medical workshop. She would have had it more regularly but couldn’t afford the �400 price tag of private treatment.
But from the end of September patients with chronic migraine may be able to get Botox injections on the NHS when other drugs have failed.
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Mandy, 45, who is treated by specialist Dr Giles Elrington, medical director of the National Migraine Centre, is hopeful she will fit the criteria and be able to have the drug.
“I had my first migraine when I was 14,” says Mandy, who has no real family history of the condition.
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“My grandad had them occasionally and my auntie gets one a year, but no-one else is affected like me.
“I have all different sorts: there are the ones I can cope with and the ones that are quite bad but I can still function with. Then there are the really bad ones that I can’t do anything with.
“I get nausea and sometimes vomiting, which can carry on for 24 hours. The majority of times I wake up with a migraine and those are the ones that are hard to deal with as the window of opportunity for taking medication may have gone.
“As well as severe head pain I also have other symptoms. My spatial awareness seems to go. I can think I am walking through a door and I will end up walking into the frame. I drop things and my speech can be slurred and my face swollen. My face might even drop down and I find it hard to talk.
“I have pain in my head every single day. It is always, always there; all across my eyes and in the back of my neck. I would say the last 10 years have been the worst. I can spend three or four days in bed and recently I had a whole month where I was so bad nothing seemed to be working.”
The 14 tablets Mandy takes daily are aimed are trying to prevent her migraines but they have had only limited success and there are unwelcome side effects too, including weight gain.
“In fact there are so many side effects that you are supposed to have a break from them every few months, but I can’t cope without them,” she says.
Mandy worked full-time until two years ago but had to reduce her hours as she was having so much time off sick with her migraines. She now works 20 hours a week as a health care assistant at Ipswich Hospital and is on permanent nights as she seems to get fewer migraines that way.
“I do worry about my job security,” she says.
“Normal” life is curtailed in other ways too.
“I feel like I can never make plans to do anything. I always feel like I am letting people down and because I don’t like doing that I find it easier not to make plans I might not be able to keep. I’ve been on holiday in the past and wasted half of it because I’ve been ill in bed. I always say it rules my life and the lives of those people closest to me. It has ruined relationships and friendships. Luckily, now, I have a partner who totally understands.”
Mandy, who lives in Ipswich, first saw Dr Elrington as a private patient at a clinic in Colchester before being taken on by him as an NHS patient and transferred to one of his London clinics.
It is through him that she had her two Botox treatments to date.
“The first one was two-and-a-half years ago,” she says. “I agreed to be a ‘guinea pig’ in a study to show GPs how to give the treatment. I got it for nothing because of that. Ordinarily it costs up to �400 a go privately. I had the second treatment two years later. It was under the same circumstances – demonstrating to others how it was done.
“That was all before it was given the OK for NHS use. On that occasion I had nine injections on my forehead and another nine around the sides, some further down the neck and along the shoulder. I believe you are allowed up to 40 injections. I think I had about 35.”
Experts say muscle-paralysing Botox has a role in treating migraine because of its nerve-blocking effects.
“I found the Botox really helpful,” says Mandy. “The effects only seemed to last for three or four weeks but those three or four weeks were absolutely fantastic. I felt normal for the first time in years. I didn’t dread waking up every morning. I was actually migraine-free for three or four weeks.”
Immediately after having the injections Mandy did experience some soreness but that was only temporary. Also, when she went to frown she didn’t feel she could. Having said all that, the positive effects of the treatment far out-weighed the negative. “Although the benefits for me only lasted a few weeks I’ve heard that the more you have the treatment the longer it works for, and it takes three or four goes to start working properly,” she says. “I’ve only had it twice, two years apart, which isn’t enough.
“Who knows,” she jokes, “if I had it often enough it might even make me look like I was 20 again.”
Mandy last visited Dr Elrington three weeks ago, when she was told lots of criteria have to be satisfied before NHS Botox treatment is possible.
“I am hopeful I’ll be able to get it, though,” she says. “I would really love to come off the tablets I am on. That would be my ideal. I know the Botox is expensive but then so is long-term medication.
“I have no health concerns about the Botox. I would do anything to get rid of this constant pain. The tablets I take have their own risks, anyway. If in 10 or 20 years’ time they discover side effects (from Botox) that is something I am prepared to worry about at the time. I just want a normal life.”