Migraine and the Future of Treatment

Hello there fellow blogettes. This week you are going to be treated to a write up of the EHMTIC (trying saying that when you have a migraine) conference.

We met at a hotel in London. I felt like I was part of a club, as we were all given a bag and some lunch (gluten and dairy free options of course, copious amounts of water, smoothie juice and decaf tea!). This gave us the chance to meet fellow sufferers and we were all swapping stories and advice. I also felt really in awe of the researchers who are so committed to helping us migraineurs. So if you ever feel alone out there because of your illness, remember these researchers who are working every day, all over the world to make things better for us. One of the researchers from California said to us "looking at you lot out there gives me strength!" He wants to help us!

I wrote copious notes, hardly any of which make sense to me now!!! SO here goes:

Migraine and Depression: research indicates that if you have migraine you are at risk of developing depression (apparently the risk increases to 50%). The talk also suggested that anyone with a chronic pain disorder (migraine, arthritis, back pain) would be at risk of developing "depressive symptoms". He also suggested that this is bi-directional ie if you have depression, you are more at risk of developing migraine. The research has not concluded whether there is a common mechanism behind depression and migraine, but recognises that they are both fluctuating disorders of the brain. In his opinion it was considered that the best treatment for people with migraine and depression was the trycyclic anti-depressants (amitryptyline, dosulepin), not SSRI's (prozac).

How your GP should care for your migraine, what NICE says: interesting facts I learnt were as follows:
1. for a bad migraine take a Triptan with an Ibuprofen or paracetamol
2. No evidence for ergotamines and cocodamol (risk of rebound greater)
3. Acupuncture has been recommended, and you can ask your doctor to have it on the NHS
4. a 400mg dose of Riboflavin (B2) is helpful

Migraine and Sleep:
Interesting facts I learnt:
1. A nap has been shown to terminate some migraines (could lead to an argument for employers to supply somewhere to sleep, as this in turn could help the migraineur to stay at work)
2. an imbalance in sleep can lead to headache (lack of restorative sleep)
3. if you do have a sleep problem, there are solutions (melatonin and light therapy) Look out for your local sleep clinic!
4. watch out for premonitory phase (yawning, irritable, craving) particularly late at night as quite often the pain of the migraine develops between 5am and 9am.
5. make sure you are getting 8 hrs minimum sleep a night. Anything less (esp 5 hrs or less) puts you at greater risk of more frequent migraines.
6. Those with migraine have a significant tendency towards circadian extremes (night owl or morning lark)

Future Treatments:

1: drugs being developed at the moment are steering away from affecting your arteries and reducing reccurence of the migraine. Good news for the over 65's who can't take the triptans, and good news for those of us who end of taking so many drugs which then in turn cause us more migraines (rebound migraine)
2: Occipital Nerve Stimulation
3: Magnetic Stimulation

The Researcher predicted that in 4 to 5 years some of this would be widely available and described it as similar to the mobile phone industry. Do you remember those huge "mobile" phones that looked like bricks? Well he said thats where we are with Magnetic and occipital nerve stimulation equipment at the moment, but in a few years time, we may be having small devices that will fit into our bags......

So if your transient receptor potential cation channel isn't working very well, I'll see you next week for Migraine Mum's next instalment. xx

The Migraine ToolKit: ways to manage your life with migraines

Migraine Mum hasn't taken a triptan drug for 12 days!!!

This is big news! Well may be it won't quite make the BBC news headlines, but I feel like I need to tell someone! I'm usually reaching for a triptan every 3 to 5 days but this last fortnight I seem to be able to rely on aspirin. I am having headpain every day now, not a migraine but a low level ache in my eyes and head/neck.

You may be wondering how or why the long term pattern of a migraine every 2-3 days has changed.......

Well to be absolutely honest, I don't know.

• The children have gone back to school and my youngest is doing 2 more sessions at nursery than last year.......more space, less stress?
• I have been trying to get more sleep (though the children have been waking me a lot over the last few weeks and I know I am very tired)
• I have reduced the amount of sugar by eating a lot less cakes, biscuits and puddings.
• May be finally the gluten and dairy free diets are paying off?
• I've resumed my pilates stretches and a small amount of exercise.
• Saw my cranial osteopath two weeks ago?

The puzzle continues. There is no one thing that is a cure. As we migraineurs know, what works for one person, doesn't for the next. But we are all like mechanics, carrying many tools in our toolkit in order to 'fix' this illness. What I firmly believe is that we can all build our own toolkits to manage our own migraines and the people around us effectively.

Here's some guidelines for building your toolkit based on The Pain Toolkit (www.paintoolkit.org)

Tool 1: accept that you have migraines...this can help with how you deal with the migraine and how you respond to it emotionally.
Tool 2: Build a support around you: friends, a good Dr, family, other migraineurs, blogs(!), join the Migraine Trust/Migraine Action
Tool 3: Pace yourself: try not to over do it on the days you feel well
Tool 4: Learn to prioritize and plan out your days. Build in relax time and fun. What brings you to life? What calms you?
Tool 5: Set yourself goals and action plans
Tool 6: Be patient with yourself (the migraine is a sign that you need to  step back and look after yourself, be kind to yourself)
Tool 7: Learn relaxation skills (you have to teach yourself to do this!)
Tool 8: Stretching exercise (pilates, yoga) and Exercise (take it steady)
Tool 9: Keep a diary and track your progress
Tool 10: Have a set back plan: who can you call for help? Let others step in when you can't manage. You don't have to be superwoman.
Tool 11: look after your body: eat healthily, drink lots of water.
Tool 12: Keep all of this up! It is a way of life and it will help you to feel you have a life...

Good Luck! Oh and by the way, I am going to the Migraine Conference in London, this Sunday the 23rd September 2012. It is a public session, so anyone can go, see www.migrainetrust.org or phone 0207 631 6970. I will no doubt be blogging about it next week.

Migraine puzzle: gluten, dairy or detox diets?!

I have a confession to make.

I went to the National Migraine Clinic in January and was on a 3 month review. I haven't been back......

I am scared. Scared of what the next step will be. The Consultant mentioned detox which involves taking yourself off all your drugs you have for migraine treatment for 6 weeks. No analgesics, no triptans, nothing. Arggh! Panic!! I cannot see how I can do this with 3 young children. There is no time that would be a good time to inflict that on myself or my family. May be a stint in the Priory would suit?

So instead, I have chosen to cut out gluten and dairy on top of all the other things I have stopped eating and drinking. It is a last ditch attempt to change the migraine brain chemistry and see if I can make a difference......if it doesn't work (which it hasn't yet) I guess I will have to take a deep breath and face my fears.....

I do feel better on the gluten and dairy free diet. I have more energy, a feeling of desire to do things and play with my children more. I feel that my mood is consistently good, not many tears at all and my stomach behaves itself better. I am getting less head pain during the day and when I am well, I feel really well.

I chatted to a friend who is a dietician. She said after 2 months you should know if there is a link. I thought "whoopee! I've been doing it for at least 2 months so I can start eating and drinking what I want again!" I started the very next day with cows milk on my gluten free cereal......within 40 mins I had a migraine........

Then on holiday I thought "well, I keep getting migraines, so I will relax and treat myself to a bit of gluten, yum". That night I had awful stomach pains, nausea, cramps in my legs and arms and joint pains. Two days later I had a 3 day migraine and felt really low and teary again.

If I am intolerant to gluten and dairy(which I think I might be), why, oh why hasn't the pattern of migraine changed?!

Migraine is like an eternally evolving puzzle which you can't seem to ever finish. I know you get migraines for many reasons, but I just hoped that diet might have been a big chunk of the solution. I'm not ready to give up yet as at the back of my migraine brain I wonder (rather simplistically I'm sure!), that may be it takes longer for the healing to get from my stomach to my head!? Another couple of months and may be then I will face my fear at the Migraine clinic..........

Top 10 Olympic ways of improving life with migraines.

Migraine mum and family are back on terra firma. We went to Spain, on a plane and there was no rain!

So do holidays bring any reprieve for the chronic migraineur?

I had my obligatory 3 migraines! 2 of them were packed into my first weekend! I am convinced they arose because of a combination of travelling with 3 young children, 4 unwieldy suitcases and 100's of other people doing the same.....the stress of getting on a plane without allocated seats with 100's of others!! Oh my! (yes, Fifty Shades of Grey was my holiday read!)I also found that even though eating and drinking were possible, they were not always possible when I needed to. And I hadn't packed enough food so ended up eating rubbish. I'm sure my blood sugar levels were low. I was also travelling on the back end of 3-4 incredibly busy weeks and I know I was feeling stretched. Oh and poor child no 3 was sick during the first night.......good start!!

The third migraine came on after playing tennis in the heat (it was only 9am!) I know that sudden exercise is one of my triggers, plus I forgot to eat a snack, then went shopping on an empty stomach with child no 3 in tow who enjoyed raising my blood pressure by picking up champagne bottles, repeatedly saying " I want this!" "I want that!" and trying to eat the biscuits before we had paid. All very explainable really.

All the migraines responded well to medication and the impact of these migraines on my holiday was minimal. I wasn't surprised to get the migraines I got which I think helped me to take my medication early. I also think by not spending emotional energy wondering why I got this migraine and feeling angry etc etc, made the whole experience lighter and shorter. I didn't get another one travelling home at the weekend.

It feels really good to feel well. Since I've been back I've had a few 'heads' which felt like they were going to be migraines. I ate, drank and the head pain went. So no medication since last Wednesday...that's good news.

What does this tell us about living with migraine? I should move to Spain?!May be a bit drastic! Now the Olympics has started, I have seen many parallels between the top athletes and living with migraines or any long term illness for that matter. There are times when living with migraine can feel like a bit of a marathon. I have been inspired by the althetes, looking at them stretching themselves but within their own capabilities....it got me thinking......

Top 10 Olympic Ways of Living with Migraine: 

1. Pace yourself: you can't sprint a long distance race.
2. Create a network of support around you and be honest with those who can lighten your load a bit. They need to know when you're not operating at full pace so they can compensate for you and understand why you need to rest. Olympians need rest, support and coaching, so why shouldn't we?
3. Eat regularly (every 4 hours)
4. Drink at least 1.5 litres of water a day (more in Spain!)
5. Rest your bodies well inbetween exertion!
6. Listen to your body and thought patterns in order to respond appropriately and quickly. That's what any good sportsman has to do....
7. Take your medication as early as you can (as long as it's not growth hormone!)
8. Distract yourself from the pain by focusing on other things, do things that make you feel good and alive. There is a lot of psychology in handling pain. Sportsmen are trained to respond to pain appropriately. how do you respond to it? Me? Relaxation, sleeping, reading and really really laughing (you know the kind, when there are tears streaming down your face)....
9. In the spirit of the Olympics, we have to keep practising to get better at handling our migraines. Don't give up!
10. But when we do get a migraine, give into it..like an Olympian would do if he injured himself. Let the people around you help. Then you are more likely to be able to pick yourself up for the next round of living........

Living with migraine.....are there any cures?

I thought I wasn't feeling inspired to write this week but in fact the feelings I am having are in fact a despondency about the whole "living with migraines" reality. I am fed up of it all. I can see no end.

The thing about any long term and chronic illness is that there are no easy answers. Admittedly, some people are 'lucky' enough to find the secret to their migraines. I recently saw a person on the TV who reported that through hypnosis, she discovered that in a previous life (gigantic leap of belief and acceptance there), a large coconut had landed on her head. Miraculously, once she had relived this awful event, she never had another migraine again.

I'm jealous. I want a coconut story for myself! There must be a simple explanation. I must be just missing it. There is something out there which is going to make a big difference to my life, if I could only just find it. I'm on a gluten free, caffeine free, and dairy free diet. I've been doing this for nearly 3 months and nothing has changed. Do I give up? Or does it take longer for my body to heal itself and with time, my migraines will get better. I have no answers. No one has any answers and I can feel very alone with some of the decision making I need to do.

 I've read many articles: one lady had acupuncture....migraines went, ....another lady did a major detox of diet and the migraines promptly left her. It seems to be so complicated as illnesses go. No one thing is reliably the culprit and you're left feeling that you are essentially guessing....it is a guessing game, full of "what if I try this....it may be the answer...."

It is a quiz with no answers. It seems to be just luck that you stumble on the right person, the right therapist, the right drug.....

Now this will sound ridiculous I expect but this lack of concrete information on how to stop this chronic illness leaves me with so much guilt. I feel guilty that I may somehow be causing the migraines myself. I know that may sound mad because I would never say that to anyone else. And if I had epilepsy or diabetes, I wouldn't be blaming myself. I also feel that it colours the picture people have of me......that somehow I'm not resilient or I am weak, or do not have a strong constitution. There's another whole blog entry on that topic!

Anyway, I have, as yet, found nothing that has a great impact on the frequency of my migraines. My brain seems to need to have them 1-3 times a week, whatever I do, or not do, take or not take. I may never find the answer......even though I know I am on the road of accepting this as a long term illness (gradually) and that I need to accomodate my life around it, I still feel let down that there is nothing I can do at this moment in my life to get rid of them or even lessen the frequency.......

Living as mum with migraines gives me the energy I need to carry on. What would I do without my children? They drain me, but also give me life. And that makes me remember something my dad said to me once....he was talking to me about as a migraineur you are sensitive to the world: light, noise, movement, smell, touch, any of these can become a trigger for migraine.Then he said, may be this sensitivity is central to who you are.....you are sensitive to others, intuitive and aware of people's pain and needs. May be, being migraine mums actually makes us sensitive and intuitive mums too? Everhopeful that amongst all this, there is hope.

PS: An update for relaxation....try the app 'headspace'. It is fantastic for visualisation and works on the principle that you have to practise relaxation skills and learn how to do it, with a view that you then apply these skills in stressful situations. The sessions are short and manageable. Available from iTunes or android. 

Migraine and exercise

Migraine Mum is trying to get fit (I'm not in this clip by the way!). I have ulterior motives....I am now 41 yrs old and have raised cholesterol. Suddenly I can't eat what I want. I also seem to have an abscence of any muscles in the tummy area and on a bad day, I can look about 5 months pregnant. (yes, someone asked me recently if I was expecting again !!!!!!)  I blame my 3 children entirely for this but I can honestly say, they have now come to my rescue.......I LOVE THE Wii!!! I play it more than they do now!

When I have a spare moment, I get myself togged up in my lycra and turn the old wii on for a bit of a prance around the lounge. Admittedly at the beginning I was rubbish, (0% technique!!!) but I got better especially when I realised that many of my groovy moves were being hampered by various things on the floor: lego, toy dogs, marbles, and someones' pants (yuk, child no 3 seems to have an adversion to wearing any).

I am now a Zumba Master!! And you can see from the clip above that any age, size or shape can do it. BUT I'm having to be careful, as exercise seems to trigger migraines.......what I have realised is that at the moment, it probably makes my brain a little over excited!! So I need to find what my limit is and gradually increase it to 30 mins. At the moment, I can do about 15 mins I think without triggering a migraine. But not every day either!!

Research backs this up, saying irregular bursts of activity can make migraines worse but regular exercise can be of great benefit in terms of endorphins and enkephalins. These are the hormones released during exercise that can make you feel good and can, according to research, help in the control of pain AND frequency of migraine.

What I find hard is that I have so many migraines (1-3 a week) and quite understandably, I don't feel able to do exercise......even post migraine my body hurts amd my energy levels are so low, and climbing the stairs to change into my lycra can seem too much. Couple this with the demands of children and the inconsistent life they can produce through not sleeping (who feels like dancing on 3 hours sleep?!), one of them being ill (no space to do those extra "me" things), or child no 3 clinging onto my leg while I try to dance (my right leg muscles are amazing!)......it seems almost impossible to create that regular time for exercise that seems to be so essential!

I know that I'm not quite at that stage in which exercise is beneficial. There are obviously no quick fixes for a chronic illness but gradual life changes which together help to contribute to a better management of this demanding neurological disease. Us migraine mums need commitment and perseverance. Being mum and being a migraineur can make exercise seem like an impossibility. But as they say "where there is a will (or a wii), there is a way!" Good luck!

PS: As part of the gradual changes I mentioned, I have been doing the relaxation session every day at night time since my last blog. I have found two good ones on www.painsupport.co.uk and an app called Stop Panic and Anxiety (free) which also has a visualisation for children.

Migraine and Stress (again!)

Migraine Mum is stressed. I know stress is an everyday part of life for all people and I know it's something that I have to learn to handle better......

Having children and all that goes with family life can feel like a tidal wave of overwhelmings, especially when you're tired and/or in post migraine phase. I know stress can cause me a migraine over time. It's all about overload! Here are some examples from my life.......

Stressful situations:
1. Monday morning: ah, quick, child no 3 is playing happily on her own.... I can get the washing out of the washing machine that's been in there since yesterday..yippee!! (small things I know)....I'll get the washing basket.

Oh, the washing basket is full of child no 2's new clothes that I meant to put away in her cupboard. I'll quickly do that before child no 3 finds me (sneaky)

Hang on, I can't even get to the cupboard, there's too many toys in the way.....I'd better put them away then.........I manage to put the toys away and the clothes rapidly. I'm so pleased with myself (again, small things I know) Great, I can now do the original job of getting the clothes out of the washing machine......

Child No 3 appears. She takes one look at the empty washing basket and walks off with it. I look at her in dismay and she says "I've been looking for this mummy! It's my boat!"

2. Monday afternoon: Migraine mum needs a break so all children have been forced to "lull" as we put it in our family which is a time of rest doing computer, TV or whatever....."I DON'T MIND AS LONG AS YOU DON'T BOTHER MUM!" An unrealistic expectation I know.....

First game console malfunctions.....I do the battery change. Child no 3 appears crying as something she has seen on children's tv has upset her. I talk it through with her and then put something different on for her. Child no 1 calls me with excitement as he has discovered another app in which a fish farts (yes really).

I finally sit down to try to fix my phone which is not receiving emails.......oh quick, turn down the potatoes....arggh! I forgot about the sausages!! I sit down again and begin to type in a code that is about 15 digits long...is that an O or an 0?! MUM!!!! game console still malfunctioning, another battery change, please work!

I sit down again and retype the long digit code, nearly there.....knock knock knockity knock.....someone at the door.....I am muttering to myself (can't write it down sorry)........hello! we'd just like to raise your awareness of....I can't listen today sorry. Can't listen to what? Everything!! Well, it won't take long......Sorry! NO! and I shut the door. Phew. Officially frazzled. Needless to say, I did not fix my phone.

So, what to do with all this stress? Breathing is generally recommended.

Effective breathing is even better. Lateral Breathing involves using your diapraghm, not just the top half of your body. Allowing your stomach and rib cage to expand outwards as you breathe in and breathe inwards as you breathe out. I do a few of these at the moment I feel stressed. But I think I need to try a bit more actively to relax. So this week, my goal is to download a relaxation track for my MP3 player and practice relaxing every day. Yes yes! I can hear you.....you're wondering when I'm going to download it and when I'm going to relax??. I don't know yet!


PS I'm going to start with this website www.painsupport.co.uk
It is designed for anyone in regular pain and in need of relaxation, providing effective ways of controlling stress and pain. That was quick work!! MM x