TRIED & TESTED


“Over 50% of Migraines go undiagnosed. Over 50% of people diagnosed with Migraine do not seek proper treatment.”

This is unacceptable. It is unacceptable that in this day and age so many people suffer from migraine when there are so many treatment options available. My condition was originally mistreated and misdiagnosed and as a result my migraines got progressively worse over the years. It’s actually only very recently, after years of doing my own research and pestering Doctors that the root cause, and what I hope will be an effective treatment, of my migraines has been discovered.

Right – the rest of this page is going to be deadly dull for anyone who doesn’t get migraines. I direct you to the ‘Home’ page for the blog proper. The rest of you, please continue:

Whenever I meet someone with migraine I have a really annoying habit of going “I can help you!” Before they can respond I launch into a rousing speech about how they must bypass their GP, go straight to the National Migraine Centre and then I list my top helpful tips. I’m not going to do that now but I am going to list my current medications and various remedies and treatmentsI have tried and tested over the years (the ones I can remember). The list below is probably only half of available options. It should be entirely possible to minimize and manage migraines – and I believe migraineurs should keep fighting until they do so. To suffer needlessly is unacceptable. Unacceptable is my new favourite word.

The first step is to get educated about migraines.

May I suggest everyone reads the BASH Diagnosis and management guidelines (BASH = British Association for the Study of Headache) They're a gold mine of information. Read them now! Written by top Headache Specialists, they contain great strategies and secrets of the trade, plus explanations of how and why you'll be given certain medications. I believe they’re actually intended for Heath Care Professionals – but they’re easy to understand and were on the internet so…

Also, by far the most practical, accessible, intelligent and helpful book I have ever read about migraine is “Conquering Headache” by Dr’s Rapport, Sheftell and Tepper. Click this link and buy it now on Amazon. This was given to me at the Dartmouth Hitchcock Medical Centre, USA, where all patients of the Migraine Centre are given a copy and asked to study it. The quote at the top of the page is from this book, which I call my Bible.* It will change your life, even more than “Eat, Pray, Love”. I take this book to nearly all my Doctors appointments and am planning on donating copies to as many GP practices as I can, and I urge you to do the same. Dip into it and study it. Also, you may be able to tell by now I have a mutual distrust of GP’s when it comes to the treatment of migraine. But they’re not all bad.

I also use "Coping with Headaches and Migraine" by Alison Frith (a Clinic Research Nurse) who worked at the National Migraine Centre from 1999-2011 with Professor Anne MacGregor. Frith is a migraineur herself, so knows what she's talking about. Again, click here and buy it now. That's an order. Professor MacGregor recommends this book on her website, so what higher reccomendation do you need?

P.S Also read any and everything you can find by Professor MacGregor. Ideally learn it off by heart. A fabulous place to start is her invaluable guide to "Migraine and Other Headaches." 

My Migraine Diary
Every self respecting migraineur has a good Migraine Diary. It's a must. Your Doctor and your Mum will insist upon it. I use this one from the National Migraine Centre (online version coming soon) and add notes in my paper filofax (I'm old school). But I've just found this on-line Migraine Tracker by Ubiqi Health, it has an app too, you can also email handy reports straight to your Doctors. The Migraine Trust also have a great online migraine diary that you can also access on your smartphone.  Migraine Diaries are essential, you can keep track of medications, patterns and triggers.

My current Medications and Treatment

*******Legal Disclaimer: Obviously, there are many different types of migraines with different triggers. I have migraine without Aura (visual disturbance) and I don’t vomit. My migraines are also rather complex as they involve neck damage. The medications that didn’t work for me, work for thousands of other people and likewise side effects vary enormously. I’m not a Doctor so please don’t try and buy any of these medications on the internet without consulting a Qualified Medical Profesional! ************

Daily Preventatives:
  • TOPAMAX (Topiramate) – building up slowly to 60-100mg daily. Epilepsy medication, proven to be very effective for some migraine. Can have very scary side effects. I will either become anorexic or try to kill my mother! (I’m exaggerating a little) Side effects hopefully avoided with slow build up.

Acute Attack Medication:
  • ZOMIG NASAL SPRAY (Zolmitripan, 5mg)
          These bad boys are amazing. It is believed they are absorbed through the nasal passage, so get      
          into your system fast, ideal if you vomit.

  • IMIGRAN INJECTION (Sumatriptan, 6mg)
          These injections changed my life. If they’re going to work, they’ll work almost immediately. I    
          use these when I’ve missed the moment with Zomig, or when Zomig hasn’t worked. If the  
          injections don’t work I know I’m in for three days. I will repeat the injection after 12 hours. Inject   
          in your bottom, not your thigh, much less painful!

  • Domperidone – anti-emetic. Although I don’t vomit, I do feel sick and an anti-emetic, such as this one also works by helping any painkillers or migraine medications get into your system quickly, as the stomach and gut shut down during a migraine attack.
  •   Brufen, Dissolvable Ibroprufen,  (600 mg) – only take during a bad three day attack.

Other Current Treatments:

Physiotherapy
I see my amazing Physio once a week and do spinal rehab exercises 2-3 times a day. When I first met her I had daily headaches, could only walk for ten minutes before getting a neck spasm and then getting a migraine. She also put me on course for getting the right scans and treatment. She completely transformed my quality of life.

Other Spine Treatment - including clever injections in my neck, Dorsal Root Ganglion Blocks and Occipital Nerve Blocks. I will soon be embarking on Prolotherapy (Sclerosing injections) to strengthen my cervical spine and hopefully stop frequent neck spasms.

TENS Unit – I was first given one of these in the hospital in America. I put it wherever it hurts on my neck or shoulders. They generate a small electric current – and basically feels like a nice shoulder massage, and really helps with pain. You can now buy them in BOOTS and most Pharmacists, but they’ll be sold as aids for going into Labour, so expect strange looks!

Some past tried and tested medications and treatments, in nor particular order:

Migraine Treatments Tried:
Reason for stopping/Side effects:
Amitriptyline
For many this is the first port of call and can work wonders but it made me fat, lazy, tired, grumpy and had no effect at all on my headaches.
Nortriptyline
See above.
Propranolol
Nightmares – hallucinations, including snakes on my bed.
Metoprolol
Tried instead of the above, no side effects but no effect on migraines at all.
Prozac
A Doctor asked me to try this as an experiment, did nothing to my migraines, nor did I feel happier!
Maxmalt (Rizatritan) Melt
Melt in the mouth triptan, didn’t work for me.
Naramig (Naratriptan)
A slow release triptan, does work but just very slowly.
Zomig Oral
Occasionally works if I take almost before the migraine, so I prefer the nasal sprays.
Nearly all the NSAID’s (Nonsteroidal Anti-Inflammatory)

Naproxen, Naproxen Sodium, Diclofenac, Indomethacin, Ibufrofen, Mefenamc Acid etc etc – my stomach can’t handle them for more than a couple of days.
Botox Injections – over forehead, scalp and parts of neck.
You need to have three rounds of this before efficacy can be determined and my health insurance wouldn’t cough up. It did get rid of all the wrinkles in my forehead and did, I think, break the cycle of migraines I was in.
Prednisone (steroid)
Been on short courses of Prednisone a few times due to medication overuse headaches. Only meant for short term use – was effective though.
Pethidine (opioid)
Given to me by a pain specialist, not a migraine specialist. Made me vomit. Did nothing for the migraine. Opioids are generally not great for migraine patients.







































Other avenues I have explored with varying degrees of success:
Osteopathy, Chiropracty, Yoga, Massage, Alexander Technique, Meditation, Reflexology, Cranio-Sacral Therapy, Acupuncture, Dental brace, Hypnotherapy, Herbal, Vitamin and Mineral supplements such as Devils Claw, Feverfew and Magnesium.

I also don’t eat dairy, including chocolate (mainly because I'm lactose intolerant - chocolate did not trigger my migraines) I don’t drink Coffee, White Wine and try to avoid Red. I do, however, love Champagne. If you would like to buy me a glass I’ll happily be your own personal migraine coach!

I’d love to hear from other migraineurs about what medications work for them. I’ll be blogging more about my triggers and what tricks I’ve picked up along the way.

*A more recent survey again confirmed this quote. Taken from the Migraine Trust Fact Sheet Page
"Migraine remains undiagnosed and under-treated in at least 50% of patients, and less than 50% of migraine patients consult a physician"  (Pavone, Banfi, Vaiani & Panconesi, Cephalalgia, September 2007)

44 comments:

  1. Hi Victoria - that is pretty comprehensive! I too found Imigran to be very effective but really hated the side effects. I used to take it if it was really vital to halt an attack but haven't taken it for ages - in fact I rarely get a full blown migraine now that I have worked out all my triggers and avoid them. My standard treatment used to be metoclopramide (anti-emetic) followed 15 minutes later by ibuprofen, and I found that taking the anti-emetic 15 minutes before the analgesic made a real difference. Now I just avoid a list of things I gradually discovered over time, initially by keeping a very careful food diary and then as time went on just by other people's suggestions or luck. So I avoid:
    chocolate, cheese, red wine, orange, lime, (lemon is fine though). I found salmon was a trigger but couldn't be bothered to see if it was that specific or if other fish were also a problem, and just stopped eating fish. I had already stopped eating meat anyway (nothing to do with the migraine) so I am just straightforward vegetarian now. Some alcohol is OK but in practice all I ever drink is white wine. One of my daughters, like you, finds she has to avoid white and is OK with red. It is a weird and complex condition is it not?! I also found missing a meal is not good. Spending too long in a stuffy room is not good, but sometimes neither is vigorous exercise. One of the complicating things is that multiple factors are involved so that it is not as simple as saying trigger x will invariably produce an attack, it depends what else is going on.....
    Enough! I have rambled on long enough...
    Rachel

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    1. Hi everyone, I have been suffering for almost 20 years, but the past 5 have been by far the worst. I have tried most of those medications, avoided triggers, massage, pt, and everything else in between. I was to the point one year ago that I could barely function and was getting weird sounds in my ears, temporary deafness and blindness and my migraines had spiraled completely out of control. I went to a OB that now is involved in a lot of food testing and cancer research at a major hospital. I found out that I have several food allergies. I am allergic to Gluten, Dairy, Eggs, Soy, and have other food sensitivities, but those are the major 4. Taking gluten and dairy out of my diet helped me tremendously. I would say that I am 50% better than I was one year ago which is huge! Before I would maybe have one day/month without a migraine and now if I follow the diet strictly and avoid triggers I can have up to 10 days per month. She was the first doctor to actually look inside my gut to find out which antibodies were attacking my immune system and head:) If you haven't tried a gluten free diet, try it for a week and see if it helps. I noticed a difference in a few days. Now if I can just get rid of the other 50%!!

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  2. Hello, please keep rambling! I'm glad to hear that your migraines are under control. Triggers are indeed complex, which is why I like the term 'trigger ladder' but in my head I think of it as a trigger pie chart! Though I think this also makes it doubly hard to explain to people who don't get migraine? "Why do you have a migraine today". "Well, let me take you back two days...". Re food - several Doctors have told me that food isn't considered a proper trigger, as there isn't much research to support the link between specific food and migaine, and I've also been reading about this in some of the journals! I'm guessing you find this pretty ludicrous? Yet further evidence that the scientific world might not have caught up with the practical world of migraine?

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  3. Food seems to be a contentious issue amongst medics for some reason. On the one hand a healthy diet is seen as essential to staving off or alleviating chronic conditions (Diabetes, Depression etc) yet on the other hand things like food intolerance isn't widely seen as legitimate I suspect due to bogus claims & fads. I wonder if, as with everything else, each person responds differently to foods in accordance with their own specific biochemistry? One of my sisters is trained in dietetics who years ago pointed me in the direction of "The Complete Guide to Food Allergy and Intolerance" by Brostof (and someone else ?Kelly) - these are specialists in medicine and food, practising in Southampton I think. It's an excellent book and great for helping folk to identify food that may be causing them difficulties.

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  4. Hi Fliss,

    How funny you should mention Professor Brostof as my Dad actually received treatment from him and was diagnosed as Lactose Intolerant. I wonder if we could get him to do a special blog post - Brostof that is, not Dad! I was then also diagnosed so gave up all dairy in 2004 but it made no difference, at all, to my migraines. But I'm far less spotty and thinner! I've also just started the FODMAP diet - be interested to hear what your sister thinks about that. I'm doing it because I get horrible IBS type symptoms AFTER very bad migraine attacks, I'm talking nearly fainting, black spots, sweating, spams - but only after a horrible migraine - so have been recommended to try this diet by a specialist dietician (all backed up by hard core scientific research). I'll let you know how it goes - going to post about it soon. The more I read about it the more I see that the stomach/gut is related to migraine in terms of nerves going from the brain to the stomach etc, not just that the stomach/gut shuts down during a migraine attack so it's much more complicated and connected than maybe previously/commonly thought? Food has never really been one of my main triggers, though I am 'sensitive' to white wine and hangovers lead to migraines but that a different issue altogether!

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  5. Hi Victoria
    I found your site via the Migraine Trust and have been reading with great interest. I have sufferred with Migraine since a very young age (now 45) and it seems to have run in my family also. I do not know how I would have coped without triptans over the years they have been a god send. I recall when I was younger taking copious amounts of paracetamol which never even touched my pain. I started on Sumatripan tablets/injections and moved onto Naratriptan about 4 years ago but pretty sure I am suffering from medication overuse and they are no longer as effective. Have also been on Propranolol for about 2yrs and have found a very slight improvement with little to no side effects - certainly no snakes in my bed!. However at a recent Migraine Trust Seminar one of the speakers (Neurologist - Dr Tyagi) advised that after 1yr you should stop taking them! GP never mentioned this to me so need to get appt and check this out as no doubt as long as I keep asking the repeat prescriptions will just keep coming - no questions asked - never felt GPs were all that interested and happy to had out the prescriptions and move on to the next patient. Triggers for me are similar to some others and include missing a meal, exercise (which I love and refuse to give up) often will be followed by migraine, any major distruption to routine ie holidays (how many holidays have been ruined by migraines - I have lost count), fresh orange and sadly as I get older alcohol seems now to trigger migraine more readily. Keep up your great work your doing a great thing by highlighting this debilitating condition.

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  6. Hello Elaine, thank you so much for your comment and sharing a bit of your story. Don't you feel so sorry for people who can't take Triptans! At the moment I'm trying to work out emergency strategies for when Triptans fail, scary stuff! RE GP"s if you look at other posts in the main blog section you'll see I've had troubles with them myself which is why I usually go straight to the fabulous Doctors at the National Migraine Centre which I'm sure you know all about if you're in touch with the Migraine Trust. I find they usually work with my GP - and most GP's are happy to refer to their wisdom! I think most GP's just don't have the time to keep updated about advances in migraine care?

    Re medication overuse headache there is a really useful chapter in the book "Coping with Headaches and Migraines" mentioned above, I've put in a link straight to the Amazon page. Don't know if you've read it - but got some great advice. I'm actually about to write more about that as a fellow migraineur friend of mine is suffering with this at the moment, and I've had MOH twice before. So easy to slip into. Re Holiday's being ruined - you must read a comment left by Amanda on the Topamax post on the Home page. Her recent holiday was also ruined because she forgot her Triptans. Hope to hear more from you as I keep writing as I'm sure you've got lots of great advice and stories! x

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  7. Hi - have purchased the book already on your recommendation! (arrived yesterday) Re forgetting Triptans - I often feel like the 'classic drug addict' - never leaving the house without my drugs! ...I am sure others sufferers will recognise this behaviour...can almost feel myself coming out in a cold sweat if I find myself away from home having forgotten my Triptans - almost enough to bring on a Migraine! :) Take care x

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  8. Hi Victoria,

    I found your site through Twitter and it's proving strangely comforting to know there are other people out there who are experiencing the same issues as I am (although it's also sad to know that other people are also having to experience the same pain & disruption to their lives). I was diagnosed with chronic migraine last year, hadn't really suffered from migraine before then & have yet to find out what triggers them but have had to take a fairly significant amount of time off work to get them under control, especially at the very beginning.

    I am now on a daily regime of amitryptaline & topiramate to prevent the migraines & I have found that the days that I am suffering have been significantly reduced. I am finding that if I take medication quickly enough I can continue working if I take one oral sumatriptan with a couple of co-codamol, if it's a more serious attack or if I don't medicate early enough I have to take two sumatriptan which knock me out & involve more noticable side effects which mean I have to stop working for a couple of hours. I am under the care of a neurologist who specialises in pain management and have undergone a couple of occipital nerve block injections which I have found reduces the amount & severity of migraines suffered for the following couple of months.

    I am off to order the books that you recommend & hope that they can help me reduce my reliance on medication or at least help me understand why I have suddenly started to suffer from chronic migraines xx

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  9. Hello Tina! Good old Twiiter, I'm so glad you found this page, there is so much to say and I'll try not to bombard you with questions and information but the first thing to say is that you are definitely not alone! Everyday in the UK 190,000 people get a migraine. So welcome and consider yourself hugged! I'm wondering if I should work out how to set up some sort of chatroom/forum on here so us migraineurs could more easily share info and advice.

    Anyway, back to you. It must have been such a terrible shock to suddenly get your first migraine. When you say you don't know what triggers them do you mean you don't know what triggered that original onset last year, or you don't know what triggers each individual migraine? It can be so hard when you're getting chronic or daily headaches as your 'threshold' is so low that the tiniest thing can set off a migraine and individual triggers become impossible to identify - and it's much more about looking at the bigger picture, which I'm sure you know. It sounds like you're in the hands of a good consultant. But I will just say I saw a Neurologist who was also a pain specialist, but he wasn't a migraine specialist - and as a result I didn't get the care I needed. So I've realised that we really do have the right to get second opinions about our cases if we don't feel happy about our care. A fresh perspective/insight can sometimes teach you something, reveal something no one else thought of etc etc. And that's another point, try and learn everything you can about migraine. There is a lot of rubbish out there on the internet - which is why I only recommend those two books - as they were both given to me at two prestigious Migraine Clinics. But again, everyone's migraines are different, so you have to learn about your individual migraine...

    Also, I assume you're keeping a daily migraine dairy which is often the key to working out triggers/patterns/ lifestyle changes needed etc? The National Migraine Centre have two online and I've just found this really fun one that you can do on an iphone/ipad or blackberry that is very detailed and you can even send to your doctor! http://ubiqihealth.com/
    It looks really helpful, might even try it out myself.

    And the final thing is there is so much help and a lot of treatment options! For example, only this January I worked out that having nerve blocks (exact same content as Occipital Nerve Blocks) in the very top of my spine at the back of my head works much better than having them in the occipital region....so it's about trial and error....different triptans work differently on different people(glad you've realised the key is to take as early as poss)..I could go on and on...

    So welcome and I look forward to hearing more. And I realise I've done exactly what I've said I wouldn't do! You probably know all of this already and think I'm really annoying. Sorry, but it does all come from a place of care and concern! Do send me a private message on Twitter with your email if you'd like to chat there. Love Victoria xx

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  10. Victoria,

    Thanks for your reply, I will DM you on Twitter with my email when I get out of the office as it would be good to chat offline :)

    I must confess to being the type of person who made comments similar to those in your video (adopts suitably hangdog look) until I started to suffer & I am supported through all of this from a comment I found online in a presentation made by my Neurologist (I'm not a stalker, I promise!) which said "pain without injury is not synonymous with malingering".

    Talk to you later

    T xx

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  11. Hi Victoria..

    My mother suffers from migraines. For me, as a child, it was so upsetting to watch her laying in a dark room not being able to play with me or at times not even move or speak, for 1-2 weeks every month!! She eventually found that no matter what medication she took, her migraines had their own 'cycle' and taking any medication worked like a boomerang. It suppressed the attack only for it to return stronger until it had completed its 'cycle'. She is now 65 years and for the past 20 years uses no medication. Her attacks last for about 3 days (rather than 5) and they only occur every 5-6 weeks (rather than twice a month). Their severity also decreased. I have to say that menopause also helped (a lot).. I sympathise with all migraine suffers.. In my eyes migraines are a chronic disabling condition that most people cannot acknowledge and understand!

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  12. Hello, thank you so much for your comment. Have to say your mother sounds like a very brave lady, 5 day migraines are no joke! But I've realised too that you can't fight the old migraines sometimes, you just have to let them run their course! Still, can't believe she really takes nothing, ouch! Also can't have been much fun for you either. It's also great (well not really but you know what I mean) to hear a non migraineur acknowledge how disabling they can be - but I'm pretty sure anyone watching someone in the throws of a bad migraine would be hard pressed to deny how severe they are! And you also raise an important issue in that they really impact the lives of those close to migraineurs...just look at my poor parents...bet they never thought their darling daughter would be coming home to live with them! I do wish your mother and you all the best! x

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  13. I am one of those people who, when not medicated i have migraines constantly, yet i have never been given triptans, currently switching from nortriptyline to topamax and in quite a bit of pain while I wait for it to kick in so I am going to go ask for ome tomorrow!

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  14. I can't deal with triptans ,I have tramadol and naproxen for menstrual migraines.as and when shortly before and sfter period , complex migraines I think they are called ,I

    don't know much about them does anyone else.

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  15. Hey Victoria,
    im 15 and a migrainer - diagnosed 5 years ago - i get a migraine everyday (some are short and others last a number of days),
    i have no obvious triggers, nor do regular painkillers work,
    I was on propalonol for 10 months but I gained weight and got really ill (as well as hallucinations - similar to the one u had about the snakes),
    Im starting Topomax (topiramate) on Monday and Im worried about the weight loss,
    Im already average weight for my age and I dont want to turn anorexic or get sick (i have a really weak immune system and react badly to drugs)
    Lucy x

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    1. Hey Lucy! So glad you found migraine monologues but so sorry you're having such an awful time!
      I found that if I just took Topamax at a very low dose and increased very, very slowly the side effects weren't as scary as I thought they were going to be and I actually haven't lost any weight at all! Do you have a migraine & headache specialist who is looking after you?
      Also if you go to my migraine rituals and comfort tips posts you might find some ideas to help? Though you've probably tried most of them already. Are you in the UK?
      Victoria x

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  16. Hi Victoria, I've just finished a set of 5 sessions of hypnotherapy at the London Migraine Clinic and a girl who was in my group recommended your blog. Great to see you are so positive and pro-active. Like all of us I have tried a squillion things and like most of us sumatriptan changed my life. I have been through the MOH cycle once, I lived in India and bought them over the counter for about 50p a tablet...not a good habit to get into. I use Zomig nasal spray more now as they are faster for me and I usually vomit so spray is better than tablets. I would really like to know if anybody else has a side effect with Zomig? I get really sore joints after using it, I more often than not take it during the night when a lot of my attacks come on, and in the morning I find I'm stiff and sore, hands and fingers especially are affected and also knees and hips. Does anyone else have this? It usually wears off by around mid afternoon but then I feel whacked for the rest of the day. A nuisance but on balance better than a full on attack! I would really like to hear if this is the case for anyone else. Thanks for writing about Migraine.

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    1. Hi Elizabeth, I'd love to hear more about the Hypnotherapy session at what is now called the National Migraine Centre - actually hoping our mutual friend is going to do a guest blog post for me on them! I use Zomig Nasal sprays too and think I have a similar sensation to you after using them - but I feel I kind of ache all over - my neck/shoulders feel incredibly bruised, my ribs hurt, my tummy hurts - I've talked to Dr's before about whether this is the Zomig or just part of what I call the migraine hangover (postdrome) effect? Though recently my local chemist couldn't get any Zomig nasal sprays so i've been having to use the melt in the mouth versions and I don't think the after effects have been quite so bad - though they obviously don't work so quickly! Next week I'm back to nasal sprays - so will let you know if there's any noticeable difference.... or if it's just because I'm doing a bit better generally.... Hope you're well today! x

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  17. Hi Elizabeth and Victoria, I take Zomig 5mg, but the 5mg make me feel really dizzy. I was splitting them in half (since they sell 2.5 mg ones too, and to save money). Zomig is crazy expensive in the US. I've paid $45 for 3 pills once. My 90 mail pharmacy lets me have 15 pills for $100. (I get migraines 3-4 times a week, so I know the nose spray kind would be more expensive per dose so I never asked for them.) I've noticed that taking half a pill is no longer working so I'm stuck taking 5mg and being dizzy. I have not had any of the sore joint issue, I'll be looking for that. I've tried Imitrex, works but had worse side effects. Frova worked great, least amount of side effects. (But got on Zomig when I worked abroad and never changed back). My most recent neurologist gave me tramadol (an opioid antagonist) but it makes me feel like I'm walking into walls the next day and often leads to rebound headache. I stopped taking that. I take Zofran (Ondansetron) for anti-nausea, it works great with no side effects. I tried Topomax but it made me feel skinny and stupid (I didn't mind the skinny part). I tried low doses of prozac, made me emotionally numb and gain weight, did nothing for the headaches. Most recently, I've read Heal Your Head The 123 Program and I've decided to attack the diet issue of this. (MSG is in everything! Stupid corporate industrial food complex. End rant.) Here's hoping. Has anyone tried Butterbur as a preventative? My gynecologist recommended it. Anyways, it's so nice to have found your blog Victoria. It's so nice to know I'm not alone. Friends try to understand but rarely do. - Laura

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    1. Hi Laura, sorry it's taken me a while to get back to you - been having a bit of a bad week myself. I don't know what we'd do here in the UK without the NHS to subsidise the cost of our triptans and medications. I remember so clearly being stuck in CVS when I lived in New York and my insurance had run out and I had Imitrex injections and Zomig nasal sprays at the counter and my credit card was declined - I needed them so badly I had to ring my Dad in the Uk to pay for them for me - and yes I do realise how incredibly lucky I am that I was able to do that. So in a very small way I can understand a little of what you're going through. A stupid pain specialist once put me on an opiod once too - made me feel awful - generally they're a last resort for us migraineurs as they don't agree with our system but sometimes can be worth it. Are you currently under the care of a specialist? It really is worth trying to find a good migraine specialist as they can make all the difference - along with doing a lot of our own research etc etc. There are still lots of preventatives you haven't tried but I know it can seem like a long journey, but let me know how you get on with the food elimination and the Butterbur - I know some do well on that and Magnesium too! Glad you found the blog too. x

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  18. Hi Victoria,

    Just came across your blog (found it through twitter)... can I just say that you rock? Life-long migraineur myself... just started my own little blog (www.headachehelp.org). Meds I've tried:

    Triptans: all triptans seem to work for me (but they make me completely EXHAUSTED). anyone out there experience the same side effect?

    Botox: tried it only once - I live in the US and found my approval process to be fairly easy with insurance - went to The Headache Center in NYC... you just need to tell insurance that you have tried 3 different preventatives and that you have at least 15 migraines/ month. I thought I felt relief for a week, but then they came back. (NYC was too far away for me to continue).

    Cambia: didn't work

    Amitriptyine: didn't work

    I just went back on Magnesium for a week and haven't had a headache. Going to continue w/ the magnesium daily.

    Best,
    Jamie

    follow me! Twitter: @HeadacheChick

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    1. Hey! So sorry I'm only now just replying!! I'll check our your website - sounds great. Really hope that the magnesium is helping you at the moment, fingers crossed! x

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  19. Our 21-year-old son has had migraines for 7 years. They began in middle school and we went to a gastro (focusing on the nausea) until they determined the nausea was due to migraine. We've been to several neurologists, been through a handful of Raskin Protocol treatments, and tried all medications (prophylactic and acute).
    His migraines were initially infrequent (2x per month) and became more frequent as he aged. He now has them constantly. He's had botox injections without success. After journals and diet manipulation, the only trigger we've found is barometric pressure.
    After doing some online research, we asked his neurologist about prescription marajuana. He prescribed Merinol, with some success, but the dosage he required was not approved by insurance. We found that his using marajuana was less expensive and more effective. He's perfected the dosage so that his headache is reduced to a manageable level, the nausea is relieved, and he's alert and can function.
    This treatment had given him his life back! Previously, he was in constant pain and had to drop out of college and couldn't work. He now can work 20 hours per week and is taking 2 classes at a local technical college.
    The hurdle now is how often he has to "medicate". One "dose" only lasts 3-4 hours. I know this is an unusal question, but is there a better method of dosing, other than smoking, that lasts longer? Is there another medication, accepted by insurance, that would perform/give the same relief as marajuana?

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    1. Hello, hello! Im so sorry I haven't gotten back to you soon but this originally went into the spam folder. I'm afraid I don't actually have an answers for you but suggest you get in touch with Teri Roberts over at migraine.com as I bet she might have more information or know how you might be able to work something out - tell her I sent you over. While it's great your son have found something that works for him it sounds like it's frustrating still. Really wish you all the best of luck and let me know how you get on - I wonder if it's a case of working out why the marajuana works so well and going back to the neuro and hashing out (excuse the pun) that! Keep well!

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  20. I love your chart above of past migraine treatments that you have tried! That's a great way of keeping track and displaying it for others - really help to see! I have tried a lot of similar ones, so I find it quite helpful to see what has worked, and what has not worked! Thanks so much for sharing!

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    1. Hi, thank you! I also have a morbid fascination with what other people have tried - I think people are a bit freaked out when I first meet them and all I want to know is what drugs they're on! Hope you're well!

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  21. Hi,

    I am just wondering how you are going on the Topamax treatment now? I am also a migraine sufferer.I have been on Topamax 4-5 years ago as a preventer and found it worked well however I lost a lot of weight (down to about 40kg) and some basic blood work was altered so I was taken off it. I too have tried several other medications and I have found some (most recently atenolol) to be somewhat effective but none so good as Topamax. I remember having some of the side effects, the tiredness at the start, the insatiable thirst and the tingling fingers and hands - but I just adapted and got used to it because I had no migraines....no headaches at all once the dose was adjusted to the correct level I needed. I was on it for about 18 months. But then the weight just kept coming off, and off and off.
    I don't recall any psychological effects I could attribute to it. I did feel quite lethargic and anxious at times....but that really came when I was tapering it off to cease.
    I have tried so many things since but no real success. I am seeing neurologist again and I am thinking that I will ask to go back on it (monitoring bloodwork and weight closely)......but I am now reading all the negative things and sites dedicated to stopping people using it.Those sites are making it sound scary and I don't remember it to be that way.

    So I guess I am wondering how someone else goes on it? Someone that doesn't seem to be instantly negative about it!

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    1. Hey Ali,
      Really hope the follow-up appointment went well with the neurologist! I promise I'll be writing Topamax Part II very soon - but overall I had a positive experience with it but I think because I stayed on a low dose and crept up very quickly. Best V

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  22. Hi Victoria - My neurologist has me on this supplement protocol that has resulted in a 87% reduction in the frequency of my migraines. Feel free to check it out on my blog: http://www.livinga4hourlife.com/1/post/2013/05/migraine-relief.html

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  23. Very interesting article. Migraine can be really annoying, specially when you`ve got some work to do, thats why I refer you to this article migraine - vertigo

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  24. hi i take zomig 2.5mg and it works now that i have changed my diet and have a very quiet lifestyle.
    sometime also moxtrin.
    no coffee no alcohol, no chocolat, no cheese and no seeds and of course no junk food, processed food and cold cuts (nitrite), no dried fruits.
    exercising, low stress, early to bed and waking up at the same time.
    since i am pregnant no migraines, so i dont know if it is because i sleep 11 hours a day, or the vitamin i take (lot of Bs), or just because my hormones levels have changed (lot of estrogen and progesterone in my body)- which i think might be the closest to the truth.
    i do have an heavy past of migraines.. hard pounding pain, every week.. lot of medications (i still have them all pilled up in a closet:-) and maybe not a very healthy life..
    so i will say to people: even if food is not a scientific trigger (say who? say the doctors, which - excuse me if i am going to offend: don't know a lot about nutrition and health!); living off farmer markets produces can and will change your outcome w migraines..

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    1. Hey
      Really glad to hear that you've found a solution that works for you! I've often heard that some do well during pregnancy....thought not quite sure I want to try that just yet! Hoping you're still doing well!

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  25. I have had migraine since I was 5 years old. The aura kicked in around 11 years old. Since then they have been consistent in turning up but not in how they are when they do. I have had visual disturbances, sensitivity to light, sound and movement, nausea, vomiting (which landed me in hospital last year), numbness of various extremities, aural/visual hallucinations, mixed up speech and temporary inability to move certain parts of my body. My warning signs have changed and can now be anything from a tightening in the next, a 'feeling' one is coming to deja vu several times a day (when it first happened I had been watching a drama where the main character had deja vu and was diagnosed with a brain tumour - she was dead before the end of the next episode. Not my best viewing choice) I have tried an assortment of medications (such as amitriptyline, naproxan etc) that did not prevent even one. I have tried the Maxalt and Imigran but I would do better to lie down in the middle of the road and wait for my head to be run over by a bus. My blood pressure is low, stress levels not too bad (I teach) and I sleep brilliantly - partly due to my medication. These days it is a combination of Propranolol and Nortriptyline with large (1200mg) doses of magnesium daily. It is the magnesium that has removed the aura which takes with it most of the nausea and all of the vomiting. My biggest issue now is that I try to walk on a regular basis for exercise but after three weeks of walking 4-5 times per week I get a migraine. Granted they are far more manageable but no doctor has been able to tell me why. This has happened for the past 6 years - ever since a quite spectacular migraine that involved hallucinations and lots of vomiting for the main with slurred speech and memory loss as dessert.I have had a cat scan but it only picked up recently acquired mastoiditis.Still, I keep walking and avoid chocolate like the plague and count myself lucky that I can hold down a job and I don't have to cancel too many plans. I have been fortunate that both the schools I have worked at have been very understanding about it (one school had 1/4 of the staff with migraine)

    I would love to know if anyone has had the same problem with exercise or if I am simply odd!

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    1. Hi, thank you so much for sharing this. I know a lot of people, actually, who have trouble with exercise. I'm just grappling with this myself again. there are, as I'm sure you know, so many reasons - blood sugar drops, dehydration - for me it's also a physical issue with my neck. The Migraine Trust and the National Migraine Centre both have some good fact sheets and info about this that might help. p.s It must have been so scary getting your first Aura aged 11!! You must have had no clue what was happening to you. Horrible!

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    2. I really had no hope of avoiding migraine as it runs through both sides of my family down to my son (who also gets aura). My Great Grandmother had them so bad she would bang her head against a wall because of the pain. My mother started getting them around the age of 60 - she said they were hereditary and I was the one who had given them to her! :-)

      I had no idea what was happening when I first got aura - had no idea what it would bring. When I did, I dreaded seeing it. The nausea would kick in then I had 24 hours of vomiting before 24 hours of being utterly knackered and sleeping it off. I have tried so many preventitives from the natural (like feverfew) to the prescription - including my current regime which works the best of all of them. My migraine have changed and evolved over the years and tolerance to medications occurs at varying speeds (the oxycontin, for example, was fine for about 9 months starting with 10 mg but after the first two I had to increase the dose to 20mg. Then the vomiting started.)

      I can't seem to find any information as to why it takes three weeks (pretty much) for it to have an impact. I read a lot of information about getting migraine during or directly after but the only thing that I have found that could be a reason is that low blood pressure can trigger them - and regular exercise it helps lower blood pressure. I am currently experimenting to see how many times per week I can walk without triggering one. I see an osteo regularly and yep, my neck is always out. It doesn't seem to set them off though.

      Still, as I said, they are manageable and most of the time life goes on with minimum disruption. Unless of course I get chicken pox, labyrinthitis (or David Bowie in the Ear as I called it) or mastoiditis (Woolly Mammoths in the Ear) :-)



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  26. So I just came across your site... How are you feeling on Topamax? I LOVE it, changed my life, but its been causing me crazy body odor. Have you come across that terrible side effect?

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  27. Just thought I'd chip in on my experiences thus far on the migraine trail...
    Migraine started for me in primary school - although I have a terrible memory and can't remember much about that time, I had I believe both abdominal migraine (where I would just turn white and soon after vomit) and the traditional full on painful migraine attack. I was diagnosed with migraine fairly early I believe but the only treatment available (I was young I suppose) was migraleve (which at the time was just paracetamol).
    In junior high school they seemed to tail of and become less frequent (the abdominal ones anyway), but still wasn't given anything to control them. In senior high they were as frequent as ever and although I can't recall when they kicked in to a twice a week cycle (probably around 15/16). I've been on the lot in terms of pain relief and preventatives, all the triptans (tablets, injections, nasal sprays), topamax, amitriptyline, pizotifen, phenytoin and nothing worked at all. I will point out that at this stage I was being treated still within paediatrics and not by neurology (which has it's positives and negatives - the main positive being that I was at least being seen on a semi-regular basis to discuss treatment; one of the negatives being that I would find it unusual that I haven't been affected mentally by being all those meds before I was 18). All that being said, I wasn't affected academically by the migraines as the repetitive nature of them was something I just got used to which was helped again I suppose by my poor memory, and chose to study Pharmacy - (in all honesty) in part at least due it being 'ironic'.
    This went well enough until a couple years ago when I was prescribed pregabalin; which I think you've mentioned also trying, and personally it was hell - not that I noticed it at the time - but it also did nothing for my migraines (which for all intents and purposes must have been either chronic/transformed migraine or NDPH with migraine features - but neither was diagnosed with one neuro I saw spending about 5 minutes with me any coming up with the conclusion that I have migraine - no course of action and no elaboration), but really messed up my studies, causing me to have a repeat year (which I shouldn't have took until the GPs stopped the meds - which they more or less refused) and taking the past year off due to crazy withdrawal and bad migraine timing last year. All that being said I have had a clear mri in the past year and seen 2 different neuro with the last one stating nothing of any benefit.
    I'm planning on heading back to uni this year (on another repeat year to sit 3 exams), but the fact that I'm now essentially 3 years behind gets to me at times.

    If I could ask - has the migraine affected you in any major way - with 3 masters degrees in 12(?) years - I guess not that much, would you care to point out how you've been affected prior to finding something that works?

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    1. Hi! Thanks for sharing your story and sorry it's taken me so long to get back to you. The Spam filter is crazy on this thing. Um, has migraine affected my life in any major way.....not being able to work full time, living with my parents in my 30's.....just a few things for starters! Don't give up on your journey

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  28. Ive just burst into tears reading this site im so exhausted after years of suffering my drs treat me like im attention seeking I just want to feel normal thankyou for all your work put into this I am taking your advice in regards to the books and diaries and will consider the migraines association when I have enough evidence for them to see
    im just starting topamax , sumatriptan is useless,rizatriptan sometimes helps a bit and then the plethora of NSAIDS

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    1. Hi melinda, I'm so glad you find the site. Please don't wait to get in touch with any of the migraine charities and specialists….you'll already have all the 'evidence' you need - and it might take a while to get an appointment with some of these places so starting making contact asap. Good luck with the Topamax! It can be an interesting ride - really helps some….really annoys others. Fingers crossed for you x

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    2. Hi Victoria, 3 days after that comment i ended up 2 weeks in hospital status migrainous which was a slow process , they tried IV aspirin which worked in there but ultimatley as soon as i left the drugs in my blood dropped and a rebound migraines started ,my neuro consultants attack plan is 40mg of nasal sumatriptan and 900mg of aspirin 3 times a day with anti emetics during the attack but after reading the migraine trust website i decided off my own back to stop taking painkillers and triptans as much as possible and have had 2 massive migraine attacks that have left me completeley unable to walk etc, ive just stayed in bed for 5-6days, with topamax after 4 months at 100 mg the side so far I have had is at first a very irritated throat, unquenchable thirst, this has settled now but i drink around 2 litres a day still if not more, tingly hands, feet ears and lips, always cold, no appetite, difficulty remembering things especially words which is annoying as i write up legal cases for a living! and combined with a strict elimination diet i have lost around a stone and a half (17/18lbs) so im starting to look very skinny now at 112lbs even though im reintroducing foods and have identified that smoked bacon and dairy intensify my daily headaches im struggling to put weight back on ,i do think it has cut my migraines length down however that is all i can say the side effects for me are ok to live with and im the thinnest ive ever been( i was the fat kid at school people dont know who i am now!) im heading back to the drs to try and understand the daily headaches that im having as im developing visual distubances with them, double vision and everything looking like its turned to mirrors or crystal at first i thought my migraines had decided to try out a new aura for fun! , the optometrist have checked my eyes/pressures and the backs of my eyes and they say eye health is normal, i keep an incredibly detailed headache/migraine/food/medication diary and take magnesium feverfew, acidiphilius and high levels of omega 3 to supplement my diet
      so hopefully I will be able to get back to a more normal way of life soon!

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  29. Hi Victoria, have you tried a voltaren shot during an attack. Would love to know if it is as effective for you. I'm also on topi as, but find that voltaren is amazing, much more effective than immigrant etc!

    Love your blog, keep well. Angela x

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  30. Hi Victoria, great to find your site! I have fibromyalgia with daily chronic headaches/migraines. I've done the Endep/Lyrica/Propanalol dance with a dabble in Botox to no avail. Just starting out now on Topamax but hating it so far. I think it's actually making my pain worse? Will be keeping an eye on your blog :)

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