I am sixty-seven. I started having migraines when I was five. I have had every procedure you can think of including a nerve stimulator, nerve blocks, cranial nerve cutting, Botox injections and about forty different prophylactic drugs, all under the supervision of the neurology departments at Queen Square and Addenbrooke's. The consultants I have been treated by have been thorough and well-meaning despite being overwhelmed by the number of chronic migraine cases they deal with daily. Over the years I have met dozens of people with chronic migraine desperate for help. Most of us suffer from chronic rebound headaches caused by the very drugs we take to stave off the pain. Triptans are the best and the worst of drugs: the only drugs which effectively abort an attack but highly addictive: cold turkey is one of the worst experiences anyone can go through. If you take triptans you will need to go through cold turkey over and over again as you struggle to become drug free.
Once you have eliminated all the trigger factors which make things worse: alcohol, junk food, wheat, dairy products, anything with caffeine in it... you're left with those triggers which you cannot control: low pressure, strong smells, pollution, noise and bright lights in public buildings. I'm sure everyone has their own list of triggers.
The idea of a prophylactic drug is wonderful but the reality is that every one I've spent months and months, even years trying has had such serious side effects that the relief from pain, which was real, was less impressive than losing my mental capacity, creativity, intellect. It can be wonderful feeling no pain at all for the first time in one's life but the cost is very high if it means giving up work and ceasing to function as the person you were before you took Epilim or Topirimate (which also causes kidney stones) or any of the many other calcium channel blocking drugs. Pain or Brain Loss? You have to choose.
I'm pretty sure that migraine will be cured only when someone identifies the faulty gene which causes it and finds some way of zapping that. In the meantime, I wish doctors would be honest with patients and help them manage chronic pain rather than suggest the condition can be cured. It is not a life-threatening condition, it just means life is very painful, more limited than it would be without the attacks.
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woodlog
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Thanks for your post Woodlog - your perspective and experience is in equal measures interesting and depressing! I'm a 30 year old woman and have only been suffering for about 15 years but I can see my situation heading in the same direction as yours. Something in your post dos strike a nerve though - maybe I do need to come to terms with the reality that I won't ever be migraine free. I feel like I'm on an endless search for that one miracle drug or treatment, and I'm currently on week 2 of one of those nasty triptan detoxes you describe. Oh well...
I am in exactly the same position with my migraines having been bombarded with every pill the doctors can think of for the past 18 years and it's at least slightly comforting to know that I'm not the only one who feels like I'm getting nowhere.
I not only get severe migraines but have a background headache that never goes away and I do wonder if perhaps that is to do with all the medication they give me. Going on 8 months now since I last had a headache free day and it's very tiring. Perhaps giving up on the medication and trying to lead a healthier lifestyle, limiting migraine stimulants and so on would be the best route to go. Not to mention how much free time I would have if I didn't have to continually sit in a doctors office.
Thanks for your thoughts, Woodlog. My experience is similar to yours although I'm a little older than you.
To give credit to the doctors and the neurologists I've consulted, I have never been told that migraine can be cured; it can only be managed.
I've come across a few people whose migraines have stopped but sometimes I doubt that they ever actually had what we usually understand to be migraine. Others had success with alternative treatments of which I've tried a few but again, without success. I've also read the book "The Migraine Revolution" the by the Australian Martin Brink but I find his answers to the problem are (a) very long-term almost to the point of being unrealistic, (b) potentially very expensive and (c) in some instances the treatments he suggests are just not available in Europe.
Recently, I've had some luck. Because of a new heart problem, I was prescribed the beta-blocker Bisoprolol and within a couple of days the frequency and intensity of my migraines lessened dramatically. I still get headaches and a fortnight ago had a horrendous week but on the whole, my life has been transformed; so far then, so good.
I tried another beta-blocker, Propranolol, some years ago but it had absolutely no effect whatsoever on my headaches.
I've also had the experience of over-medicating and having to go "cold turkey" and most other prophylactics I've tried either didn't work or worked for only about three months. Virtually all were accompanied by unpleasant side-effects, the worst of which came with Topamax.
I'm hoping that my new "discovery" will be more effective.
Found your post to be very interesting and honest!
I too have suffered years with this awful debilitating condition. Its really misunderstood and i too live in the prophylactic state of numbness and disorientation. I do try not to take too many drugs however when you are desparate to relieve the awful pain it leaves you with little choice. I get very frustrated when people say that they also get headaches from time to time!!!!!! Often the headache is just a part of the overall migraine and how it affects the whole person. Anyhow, i am waiting for yet another appointment with my brilliant neurologist to talk through the next plan.
I have more information that may be useful. Check out PLOS|one Research article Occipital nerve stimulation for chronic migraine--A systematic review and Meta Analysis. So much can be done now to help.
Check out NHS Interventional procedure guidance 370. guidance.nice.org.uk/pg370
Percutaneous closure of patent foramen ovale for recurrent migraine.
Also EBC European Brain Council. Migraine fact sheet.
WHO Headache disorders Fact sheet 277.
I was told and it has been stated in yoga magazines that yoga can cure migraines, that statement is not true. It was stated in 2007 headstands can cure migraines, amongst other conditions. Headstands does not cure migraines.
Check out plosone.org October 2013|Volume 8| Issue 10
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