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

Severe Migraines and creating a Support Network

I have learnt through my own experience this week the importance of having an escape plan and a support network around you to help you when you have a Mount Vesuvious migraine.

You know the ones I mean: they erupt violently, exploding pain all over your body.......when just moving a centimetre makes you want to spew the contents of your stomach and you feel as though there is a hot screw burning a hole out of your eye socket and a blunt stake shoving its way out of your skull. The only place you can be is in bed, staying still, like a dead body, with the curtains closed and no noise.You don't want to be responsible for yourself let alone anyone else.....you're half awake, half asleep, dreaming of being in hospital so you can opt out of living, thinking, doing.

The reality is that as adults, and mums, we have to find a way through this and carve out an escape plan (alias a support network) that works when we have a Vesuvious type migraine. We have to do this for our children, for our partners and above all for ourselves.

Well, last Thursday, I woke up with a Richter Scale 5 migraine and before I could say "argghhhhh!", I found myself playing hangman with child no 2. ????

My brain was not working. Panic and anxiety were setting in but at the same time I was saying to child no 2: "Is there a 'p'?" Then to myself: Who can help me? how can I get them to school? To child no 2: "how about an 'e'?" Then to myself: how can I get them dressed and make their lunches? To child no 2 "what about 's'?" I not only found myself playing hangman, I wanted to be hangman!!

I am very lucky. I have in-laws close by (retired) and my own mum and dad happened to be staying with my sister who also lives near by.......3 phone calls later (which wasn't easy on the old head!), I had my helpers lined up and ready to do all those jobs my brain and body couldn't cope with. The children thought it was great and I slept the morning away. Phew, what a relief.

Friends also were a great support, offering sympathy via text and more offers of help. As migraine mums we need to find a system that works as well as possible in what is effectively an emergency.

Most of the time my volcano is smouldering and I never quite know when it is going to erupt and what number on the richter scale it's going to be. So I'm learning, like every good scout, to be prepared and create a rescue plan. This has to be flexible according to who is around, but creating a bank of people who you can call upon at a moments notice is vital. The erupting volcano doesn't just affect mums, it adds worry to our partners who feel helpless and it may even frighten our children who could be worrying that we are not going to be able to be mummy anymore. Children can't think beyond the moment afterall.

So, imagine you are standing at the bottom of Mount Vesuvious with your family..........and it begins to erupt. Who ya gunna call? Who's your "phone-a-friend?". Who ever they are, they are worth a million.

PS: there is a fantastic forum for people with migraine. I've put it on my resources section. You may find this a source of great support when you are feeling unwell. I've always thought it would be impossible to really run a migraine support group in my local area as I think we'd all be ringing in, saying we couldn't make the meeting as we had got a migraine!! At least the idea of a virtual support group means you can access it when you need to and when you are able to. If you have any ideas on how to manage your Mount Vesuvious Migraines, please leave us a comment! MM x

Migraines, Stress and tiredness

Stress and tiredness are known triggers for migraine for many of us. Tiredness makes stress much harder to handle. Migraines make tiredness and stress much harder to handle too. Stress can come in all sorts of forms.....I have 3 forms......they are 9, 6 and 3 years old.
2.12am: I'm asleep, lovely dream
2.13am: I find myself standing up in Child no 3's bedroom, telling her in slurred speech, not to worry about monsters!
3.10am: child no 3 kicks me out of her bed! Literally! I must've fallen asleep!
3:15am: I drift back to sleep in my own bed...bliss.
7.08am: I'm asleep, More bliss.
7.09am: I find myself kneeling on the floor, trying to find the cut that child no 2 has found and is deeply upset about. I'm feeling around her leg, my eyes are still shut.
7.10am: discusssion with child no 3 about where our poo goes.......
7.11am: my eyes open to see a pair of child no 1's pants (yesterdays) come flying at me. yuk.
7.12am: I'm awake (I think)

I have heard of the "slump" migraine: a migraine in response to a prolonged spell of stress, tiredness and multiple triggers. Usually they suggest that slump migraines occur at weekends but I guess with parenting being a 24/7 job, it can occur at seemingly erratic times depending on what is going on in your life and who happens to be waking you at the time!

My sleepless nights have coincided with multiple birthdays, Father's Day, family celebrations, an osteopath appt, hormonal changes and trips to fun fairs (again!). I've found myself feeling stretched. I've worked hard at not getting a migraine. Here's a summary of the week:

12 deep breaths taken when I realised I had forgot to pay up for child no 2's party (all is fine now but I'm currently looking for an admin assistant and an office....and a salary.....and a weeks holiday)
11 presents to wrap
10 crates of shopping ordered via supermarket.....I may have got carried away on the 3 for 2 offers...................
9 texts sent to parents who hadn't replied to party invites (where's my admin assistant? I should get a bonus for all this work!)
8 hours at wet wet wet fun fair with children. Fun.
7 hours spent on the internet trying to order presents...why do I leave it so late?!
6 roll downs (pilates) to counteract sitting at computer for 7 hours!
5 trips to the shops (I'm fed up of shopping!!)
4 sleep deprived nights (how do they know it's a bad time to wake your mum up? Do they have a meeting just before bed and decide whose turn it is to call for mum?!)
3 birthdays in family (my dad (15th June), no 1 child (18th June) and no 2 child (19th June).....bad planning I know)
2 lots of aspirin
1 big sigh of relief as planning, and party go well.
0 migraines......well, until yesterday, when the Beast decided that enough was enough and he wanted some attention.

I guess while the adrenaline is around during a stressful time in your life, you may be more protected from getting a migraine? Then, when the reason for the adrenaline has gone, the "slump" occurs. I understand why I have this migraine. I'm not fighting it. I'm just going to rest as much as I can, when I can and hope the Beast calms down soon. I'm off now to nurse the Beast. Can anyone think of a song for this week?!

Suffer with migraine? Feeling angry? Read on......

It's been a war zone this week. The ugly beast has been stationed on code red. He must've had orders to lay me low because he (and it is a he...don't ask me why) has certainly achieved an almost World War 3 standard of pain, depression and fatigue. Since I last wrote, I have struggled to live a normal life as the Migraine Beast has put me into solitary confinement every day, taking me away from my children and husband. I have managed to escape a couple of times and enjoyed myself only to find the Ugly beast has dragged me back into the isolation cell afterwards, attacking me on all sides and at all times of day and night.

I've felt very angry towards this Ugly Beast. Angry that he chooses a family holiday to announce war. I turn into Sergeant Major Migraine Mum, prepared to go into fighting mode. A war mentality descends and nothing is going to stop me, I will beat the ugly beast off. But this wears me down even more and I start to listen to his lies........you're letting your family down, they'd all be better off with someone else, you are weak, you can't even run a house let alone have a job........and so the dark thoughts take over, and a form of self torture begins......

Unfortunately I have discovered this week that when I'm angry and in battle mode, the anger goes towards people I love and myself.....this has got to change.

Luckily, my family love me!  Wow, what would I do without them? I love my family so much, they keep me in post....there are times when I want to go AWOL....a kind of perverse way of protecting them from dealing with the consequences of this illness and seeing mum/wife in such a state. I would never run away, it's just the only reaction I can have sometimes when in the depths of this war, I can't see any sign of peace. The Ugly Beast has me trapped in his prison and I want to escape.

But is this Beast really at war with me?? I know I'm at war with him.....a friend of mine with her own severe experience of migraine has enabled me to challenge this view of the Ugly Beast. Ugly it may be (and it really is Ugly), but also needy of attention....the Beast could be like a child who feels unloved, crying out for care and attention. This Unloved Beast is trying to gain my attention but every time he voices a need, I fight him off. I try to ignore him. And what happens when you ignore your children?.....they start to misbehave!!

So, if I don't listen to the Beast, then he starts to misbehave....sending me more signals that I need to listen and respond.

So, rather than soldiering on and fighting, I need to do something REALLY restful, restorative and relaxing....the 3 R's!! Then the Special Needs Beast (still Ugly) starts to calm down, happy that you are finally listening to his needs. The pain begins to go, the lows begin to fade and the fatigue cries out with relief that finally you have given the tank a bit more fuel.........no fighting, no war, no guilt, no shame...just kindness and a sense of peace that at this moment in your life, it is a time for rest.......AND you are still loved despite the beast's presence.....

I'm going to finish with words from my nearly 9 year old son who is turning into a very sensitive and kind person. He said to me "mummy, I love you, I love you even when you're ill".....that is priceless to me and cuts into all the rubbish lies that my mind tortures me with. What would we do without love? All you need is love (and triptans, aspirin and sleep)....I can feel another song coming on..........

www.youtube.com/watch?v=r4p8qxGbpOk

Words from the King for chronic migraine sufferers!

I am having a HM day. No, not a 'Her Majesty's Day' (though I realise it is the Queen's Diamond Jubilee; I have waved my flag at her on the telly!) No, I'm having a Hard Migraine day. It's all caught up with me today and I'm feeling pretty low, sore and removed from the world. Not an easy day to feel removed from the world, as we, the Commonwealth and my family celebrate the Queen's Diamond Jubilee. No party animal in me, I'm sorry to say for my family, I've just wanted to curl up and hide!

Anyway, I got a blog alert from another migraine blogger who said that the USA are just starting Migraine Awareness Month and wanted people to blog about various subjects on designated days. I'm feeling a bit subversive so I have jumped a few days already and picked one I fancied doing.....picking one of your favourite songs that link how you feel about your migraine. And I thought what better artist to pick on the Queen's special day, but the King of Rock 'n Roll, my favourite, Elvis Presley.

Elvis Presley suffered from migraine. Yes! it makes me feel closer to him too! He was also a spiritual person. I like that too. 'If I can dream' happens to be one of my favourite songs about life. It's real...it doesn't hide from the pain of living but signals a strength and hope at the same time. He sings it with such passion and I feel that passion about how I want to live my life. My children are witnesses to my love for this song as they see me singing along to the King in the kitchen using a wooden spoon! Here are my rambling thoughts......

1. "you're lost in a cloud, there's too much rain..." well I have wondered if the weather has made a difference today.....it's rained and been gloomy all day! I blogged about weather last week. There are studies that have indicated a link between certain types of weather and migraine.

2. "you're trapped in a world troubled in pain"......when I have a migraine I feel like I don't belong to the world, it's a place that brings pain because of the bright lights, smells, noises, movement. I don't want to belong to it when I have a migraine.

3. When Elvis sings about there being lights burning brighter somewhere.....well, I'm sure he isn't singing about horrible flurescent lights that you get in big superstores or the energy light bulbs that produce light that seems to sit on top of your eyes!!....he means a soft, bathing light that creates an ambience of relaxation and calm that makes you feel good.

4. Elvis sings about the hope that 'the answer is going to come somehow'. Well, of course I think about there being better medication and understanding of migraine, but for me it also means and that even though you may feel very low when suffering from migraine, you have to believe that you will find a way through it. He sings that we will still have the strength to dream and the strength to go on. And you do. Everhopeful and ever strong. (I'm turing into a poet!)

Please raise a glass of pretend champagne to the Queen (that's the closest I'll get to alcohol!) and let's raise a glass to tomorrow too. For fun and laughter and no migraine.
If you fancy sharing your favourite song and saying why, blog away and leave me a comment. MM x