How Botox treatment recommendations from NICE changed the life of one headache and migraine sufferer

Posted on the 15 November 2012 at 10:32

Chronic migraines are believed to affect 1.6% of the UK adult population and can be debilitating for the individual, leading to a significant effect on their quality of life.

Earlier this year, NICE (the National Institute for Health & Clinical Excellence) recommend the use of Botox® (botulinum toxin type A, manufactured by Allergan) for preventing headaches in adults who have chronic migraine for which the brand has a license. A chronic migraine is defined as headaches on at least 15 days per month of which at least 8 days are with migraine.

Headaches and migraine are a horrible affliction and one which I think many non sufferers find hard to understand.  I have been in such agonising pain many, many times that I wished I could die, just to be released from the pain, so to find a treatment that spares me from such discomfort is amazing”; said one long term sufferer.

NICE published their guidance at the end of June 2012 in which they set out that Botox is recommended as a treatment option for chronic migraine in adults whose condition has not responded to taking at least three prior preventative medicines or whose condition has been appropriately managed for medication overuse.

Finally the NICE guidance notes that Botox injections should be stopped if the person's headaches have not improved enough after two treatment cycles, or if the person's “headache days” have reduced to fewer than 15 days a month over three consecutive months - this is because if a person's headache days have reduced to fewer than 15 a month, they will have a different type of migraine (called episodic migraine), which is not covered in Allergan's licence for Botox.

The recommended reconstituted dose of Botox is 155-195 units, administered intramuscularly as 0.1 ml (5 units) injections to between 31 and 39 sites around the head and back of the neck. The recommended re-treatment schedule is every 12 weeks.

As it turns out many patients were very glad that NICE had recommended this treatment as a cost effective use of NHS resources because it could literally turn their life around. However, despite the NICE recommendations being published in June, NHS settings in England and Wales had until September to allocate funding for it, and for many this was too long to wait and continue with their ‘painful’ situation, especially as it was unclear just how easy it would be to get NHS treatment even when funds were allocated by each PCT.

Zie Wild Migraine Sufferer with Dr David EcclestonOnce such person is Zoe Wild, who said; “Finding out it was to be approved by the NHS gave me confidence to find out more and I was so desperate and in so much pain, impatience got the better of me and I decided to investigate the private route to see if I could be treated soon”.

Zoe, who was treated with Botox for her migraines by Dr. David Eccleston at MediZen Clinics in Birmingham, told us her journey as a headache and migraine sufferer and of her new zest for life.

My life has been a misery for 22 years, over half my life, thanks to headaches and migraine – and I say that as an optimistic person, who is full of hope for the future, of finding a cure around the next corner. Practically, every family special occasion and significant event in my life has been marred by pain and the exhaustion of being in pain.

My whole adult life has been a quest to get well and rid myself of these awful headaches. I have seen doctors from the wonderful London based National Migraine Centre, a charitable organisation dedicated to helping people with migraine – they diagnosed Chronic Daily Headache. I went ‘cold turkey’ and came off all headache medication to eliminate medication overuse headache, but the headaches persisted.

I lurched from one migraine attack to another – one attack maybe lasting 2-4 days without relief (I might take a migraine triptan and obtain some respite, but the headache would re-appear hours later) and then, just as I was recovering from that attack, bang, I would be hit by another. I was probably having 3 migraines a week and because they lasted days in many cases, it is safe to say that a day without a headache was one day in a blue moon.

Over the years I have tried pretty well all the mainstream drug treatments for migraine – beta blockers, amitryptaline, topiramate. All to no avail – pain still coming thick and fast and the drugs made me a total basket case – barely able to function. I am not saying that drugs don’t work for many people, but they don’t work for me.  The same goes for over the counter medications, e.g. paracetamol and ibuprofen – a total waste of time.   Zolmitriptam (Zomig) does work for me sometimes, but often if an attack is well underway (and one holds off taking such medications for fear of medication over-use) it just dampens down the pain for a while and then the attack returns like an uncontrollable hurricane, running its full course.

My migraines are without aura: and excruciating pain, made worse by movement, usually centres behind one eye, over my scalp at the base of my skull and sometimes into one shoulder. I see a cranial osteopath weekly or fortnightly to try to keep the terrible tension in my head and neck and jaw under control due to being in such constant pain. Unfortunately I clench my teeth at night and despite using various mouth guards, this is possibly one of the reasons why I get so many headaches.

Doctor Eccleston has been treating migraine sufferers for over ten years and is one of the UK's most experienced practitioners specialising in private Botox treatments, training and clinical trials alongside using Botox for the treatment of migraine in his NHS practice. We decided, that given my extensive daily headaches and the issues with my neck and jaw, that I should have treatment in a variety of sites. Having experienced incredible pain for so long, the prospect of a large number of small injections didn’t concern me at all and it was all over in around five minutes with little discomfort.  I had injections into my forehead, scalp, jaw area, neck and shoulders.

Dr Eccleston explained that it would take up to a week before the Botox took full effect and that I might experience some relief, almost complete relief or perhaps no relief. My instincts told me that I would get significant relief, but nothing prepared me for an almost total reduction in migraines.

I had my treatment twelve weeks ago and I do get some headaches, but they are not in the same league as before and I have only had to take triptan tablets on a couple of occasions.  I sometimes feel as if a migraine is ‘brewing’ but it is almost as if, having those nerve pathways disabled by the Botox leaves the migraine with nowhere to go and it finds it much harder to develop.

My life has totally changed since I had my treatment.  I am about to embark on a college course to change my career – something I would previously never have dared to commit to, with crippling headaches dominating my life.  I am able to do things now that I never wanted to do, because dragging myself around with a terrible headache was so hard – shopping, a walk in the park – simple pleasures that were previously all spoiled by the spectre of a headache.  I am able to enjoy my children so much more and they in turn must enjoy me more.  I feel I have been given a new chance to live life more fully and I am so grateful and glad I tried the Botox.  Knowing that most days are going to be pain free has given me so much confidence and I can’t believe how lucky I am to have found an answer to my quest.  I am realistic and know that I will need further treatments to stay pain free but at least I know I can be more or less pain free – before I despaired of being in that position.  I would recommend Botox as a treatment for migraine to anyone who feels that they have a high number of migraines a month.

Although Botox is widely available as a cosmetic treatment for lines and wrinkles, anyone considering treatment using it for chronic migraine should seek out Doctors with experience and relevant training qualifications for this indication. Talking to your GP to find out if NHS referrals are available in your area or for help with seeking private treatment is also advised.

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Blog Comment(s) [1]

Good article. We have treated migraine with Botox in Ailesbury since 2001 despite having to almost push the theory uphill with some neurologists in the Irish Medical Times. This is a 2006 lecture that I gave to the Migraine Association of Ireland.

You Tube Video Link

Dr Patrick J. Treacy | http://www.ailesburyclinic.ie