What are Cluster Headaches?

How many people can say they know the answer to this? I have had such negative experiences in my illness journey because people don’t know what cluster headaches are.  I don’t expect people to know every illness and ours in a rare one with only 1 in 1000 people suffering from Cluster headaches and only 10% of those suffer chronically like I do.  What I don’t like is when people guess what cluster headaches are.  People hear the word headache and make the rest up!

This isn’t just strangers, its friends and family; colleagues and employers; but scariest of all its medical professionals.

Again, medical professionals can’t be expected to have an in depth knowledge of all illnesses and treatments but they should know what questions to ask, more importantly they should have empathy and respect.

Don’t get me wrong; a lot do! I have had two amazing GPs practices in the last few years that have always supported me in my fight. I wrote a post recently about a trip to A&E where they were unaware of Cluster headaches but asked me the right questions to help them understand it.

But this week I had a negative experience which has spurred me into action. I was asked to give a 111 nurse (for those of you outside of the UK, this is the non emergency phone line you call for advice when 999 (911) is not appropriate) my relevant medical history. I said ‘I have chronic cluster headaches’ to which she responded ‘well not that’ … I immediately snapped back ‘Yes THAT, that’s my main illness’.  Rather than ask me about the condition she clearly knew nothing about she asked me if I had taken any paracetamol for my headache today!!!?

For those of you who are not aware of cluster headache and its treatment, paracetamol does not work! In fact It can make the situation worse, as can all pain killers.

Worst Pain condition known to man and no pain killers….so how does that work?!?

There are two main ways to treat cluster headaches: preventatives, which are normally medications that are taken daily and abortive’s which are treatments we use when an attack comes on.  I have taken more than 20 different preventative’s in the last eight years with varying success.  I currently take 3 preventatives used to treat illnesses I do not have but somehow they seem to work, these include verapamil (a heart medication primarily); pregabalin (an anti-epileptic); and lithium (a drug primarily used in mental health).  The side effects have been many and scary at times, but on the balance of things they were always worth the risk.  I am a bit 'zombified' and I subsequently have issues with my heart and my balance.  My limbs are numb and movement isn’t always easy, but I’ve developed coping strategies which help make things manageable but by no means straightforward.

Abortive treatments are not as abundant as preventatives.  For me, initially I  relied on a combination of injections of a drug called sumitriptan and Oxygen therapy.   I can no longer take the injections due to side effects but I have home oxygen.  Oxygen is taken at 15 litres a minute through a specialised mask.  I’m not sure how the oxygen works but it does, most of the time.

Interesting fact: The first person who wrote about cluster headaches and the success of oxygen treatment was Dr Kudrow, the father of Lisa Kudrow, better known as Phoebe from friends.

There are also other treatments that include ‘nerve blocks’ (injections into the nerves in the face, head and neck, that use steroids and local anaesthetic to block the nerves); ‘stimulators’ (wires that are implanted into the nerves and an electrical pulse is controlled by a stimulator implanted into your body.) I have tried both of these with successful results. I wrote recently about my serial multiple cranial nerve blocks and I’m sure I will find time to blog about my stimulator surgery soon.

So that’s how we treat it, with varying degrees of success. But what are we treating. What is a cluster headache? I can only describe my own experience’s so always ask others what their journey has been like.

Cluster headaches can be chronic where you have them daily with no respite, or episodically where you experience them for example for 6 weeks a year and then are symptom free for the rest of the year.

The pain of an attack is indescribable. It’s based around one eye and is excruciating. For me this is accompanied by a droopy eye lid, and one side of my face gets so red and hot that you could cook an egg on it.  Also accompanied by a runny nose and a runny eye; an Inability to speak; significant weakness and loss of feeling and movement in my whole left hand side.  In addition to all these physical symptoms I become terrified and irrational.  Those of you who have given birth and got to that ‘I can’t do it’, ‘it’s never going to end’ stage, well that’s the state I am in when 'attacking'.  I have bashed my head against walls, bedframes, bus stops, anything hard … I have broken the skin scratching my arm and face… I have broken my foot trying to walk before the feeling came back in my leg…I have also considered suicide.   

Did I mention cluster headaches are also known as suicide headaches.

My attacks last anywhere from 45 mins - 3 hours, but I often experience and see others report differing lengths of time.

At my worst, for just over a year I was having 20 hours of attacks each day, everyday.

Now do you think it’s a headache?

There is nowhere near enough research into cluster headaches we need so much more.

These are the things we don’t know:

• What causes cluster headaches? There are theories but no definitive cause;
• Why some of the treatments work;  I’ve often said how does that work and been given the answer ‘we don’t know why but it does’!
• What the optimum treatments are, whether this is pharmaceutical, medical or surgical we want the best outcomes.
• Why some people respond to some treatments when others do not; we are all different, but are our conditions the same?
• How to cure cluster headaches, until then I am stuck with this illness for the rest of my life…

What I do know about cluster headaches:

• They are considered the worst pain known to man;
• They SHOULD NOT be called headaches… They are not a headache.
• The complex nature of how they affect me never ceases to amaze me after 8 years of suffering;
• The worst part of this illness is other people’s reactions; yes this can be worse than the pain. The pain and I have learnt to live with each other. When people react negatively to my pain and suffering it hurts me more.  Don’t belittle what I go through…. It takes a true warrior to survive this.

So now you know a little more about cluster headaches…. I need to ask you a favour… please share this with at least one person, ideally someone in a medical profession! If you have cluster headaches the more people know about this illness the less we have to walk around justifying our experience so please share too.

What Disney Pixar didnt tell you!

Have you seen the Disney Pixar film 'Up'? I love it, it's such a beautifully animated film with a touching and heart warming story.

The iconic image of the film is the home of a couple who have had a long and  happy marriage floating away into a blue sky by hundreds of brightly coloured balloons.

This image is in my mind a lot at the moment. Not because of the film per se, more because of the meaning I have associated with that flying house with it's colourful balloons.

To me that house is my life; a happy (mostly) life that I share with my family. The balloons are beautiful, they mean my house; my life can fly! The balloons represent financial security, friendships, good health, employment, fertility, emotional well being. All the things most people take forgranted that make our lives spectacular and beautiful. 

What I know now...

Now here is the but Disney didn't tell you! Is that the balloons can burst and when all the balloons burst, when you feel that everything that makes your life so beautiful and colourful has gone, you are left with nothing but you. You don't always stand alone, sometimes you have  and things left who are close enough that they are in the beautiful little old house with you.

All that colour may have gone and your life may no longer float along in a clear blue sky but you are still here. The house is still standing. For me, who finds myself there now... With the last balloons all burst... When I open the front door to that little house, I find that it's still colourful and filled with light and life... Just not in such an obvious way.

I have lost so so so much to cluster headaches. More than I could recall or articulate. Cluster headache has gone around with a big pin and burst all my pretty balloons. But not everything. It didn't burn my house down! I genuinely have not lost anything to cluster headaches that can't be replaced. There are many things that have been lost that leave me heartbroken and grieving... And probably always will.

But I have what I need! I have who I need!  I have reached rock bottom... But honestly this feels better. The last balloon to go was controlled by us, so it was a smooth landing not a crash landing! The crash landing that we have had daily anxiety about for years! The house is firmly on the ground... We can breathe for a while and work out how to rebuild all the damaged part of our life.


So if you will excuse me I have some balloons to blow up! I'm taking this broken life to the clear blue skies again. Just you watch me!

I dont want to sleep...

In the last eight years I have had nothing but pain and exhaustion. If you have seen me out and about smiling, I was either smiling through the pain or smiling through the agony of exhaustion and fatigue. There is a third option that I was taking a super little pill called prednisolone which gives me pain relief and an artificial sense of energy that I run around burning off until I was even more exhausted that before!   However after eight years this pain and exhaustion had sadly  become the norm.  I didn’t realise I’d been walking this balancing act for years until something changed and I got both pain relief and energy at once.

In the space of a couple of weeks my Neurologist managed to put two of my headache disorders into remission and I was diagnosed with Addison’s disease which sounds bad ( and is quite bad) but the treatment I was given made me feel better than I had in ages.

My very painful Cluster headaches are isolated (mostly) to the night time hours. So in the absence of my other two headache disorders I had some pain free time during the day. Add to this some genuine energy too. Wow, both… at the same time… what a unique feeling!

I got into a really set routine, the attacks started at 9:30pm and I ventured off to bed at midnight for a few hours of pain and 02 till the attacks subsided at around 5 am.  We estimate about 30-90 minutes sleep a night intertwined with my attacks. But at 5 am when they stopped I bounced out of bed and I didn’t stop until it was pain time again!

For a month I did this… I survived on very little sleep but I was having lots of fun and being a productive member of my household.

Everyone told me to slow down a bit, I didn’t need to go from 0 -100mph at once. But why would I rest…. Seriously I can be normal for a few hours a day, why would I choose to rest!?!?

I knew it wasn’t healthy, I knew on some level I was getting exhausted but there was no way I was going to give up my new found freedom to sleep.

When my lovely wife got sick with a bad virus I ran around all week taking care of her. I was so proud of myself. I was finally getting to look after her and do it well.

However it was on my birthday that I realised that this was all about to backfire on me. As we spent a lovely family day walking around Trentham Gardens (look it up my UK friends, its lovely) in the sunshine I was freezing! Within 24 hours I had full blown flu. I NEVER get the flu, it turned into a chest infection and inevitably the cluster headaches decided that they were going to play havoc with my daytime and my night-time.

I hadn’t really recovered from this 3 weeks of viruses when I was admitted to hospital with what now looks like an extension of the cluster headache, but at the time was unexplained loss of sensation. But it scared me… not much scares me anymore, I can’t afford to waste time and energy worrying about my health. It takes up enough of my time living with it let alone worrying about it too.

I wondered briefly about why my cluster headaches had introduced something new to the challenge right now; but sat in a hospital bed all night on your own you have a lot of time to think, and the answer seems obvious…to me at least.

I had been really ill with my cluster headaches for 6 months, worse than normal. I’d had very little sleep in that time too and was fighting a huge battle every day with the number of attack’s I was living with (up to 20 clusters a day with Paroxysmal hemicrania and hemicrania continua on the attack too). Then I had the life changing month of serial multiple cranial nerve blocks and Addison’s diagnosis and my life changed for the better… but I never allowed myself to recover from the months of cluster headache assault on my body before I tried to live life at 100 miles an hour.

 I’m exhausted, physically exhausted.

But how do I take control now that I’m settling into my new normal, whatever cluster headaches has in store for me now.

I was adamant that the reason I wasn’t sleeping was physical, because I had too much energy and couldn’t sit still… but on reflection I was kidding myself. I didn’t want to sleep, I wanted to live…. I wanted to be alive while I can.

Imagine being given this new access to a life without pain or exhaustion and deciding to take an hour to sleep!

But I have to… I know that now… I just don’t know if I can.

We, as a group of chronic sufferers talk a lot about this balance. Making the most of your ‘well time’ but not making things worse for you by overdoing it.

It’s a case of accepting the chronic diagnosis as something that will be part of your life EVERY day regardless of the number of attacks you experience . Even when you feel well you have to remember that you are ill.

That’s the hard bit… In that 4 weeks I had conversations that were not about cluster headaches. Even shell and I didn’t talk about it for weeks at a time. I was living a life that didn’t revolve around it. It was genuinely bliss.

Now… well now it’s the centre of my world again as I try and get stronger. This is much more of a psychological battle than a physical one. There is a lot of work to do with both, but unless I try and rest and relax I won’t get strong enough to face what cluster headache has in store for me.

My life with cluster headaches is not what I want. It never will be what I want for my life, but I need to take some time to re-evaluate what makes me happy, what I want and what I need. I need to work out how to get it too, how to get what makes me happy in a life that includes Cluster headaches.

So for now its fun and excitement in moderation and rest and relaxation on prescription.

Why don’t the NHS do holiday’s to Tuscany on prescription… I bet I could relax and rest there!

A good emergency experience... they do happen!!!

There is apparently very little about my health that is normal compared to the average person, But hey I never claimed to be normal!

On Monday I was admitted to hospital with new and unexplained numbness in my right arm, leg and face.

I went through my local A&E so obviously I saw a number of health professionals from the receptionist, the nurse who triaged me, the nurses to ran my tests and fitted my cannula and the A&E nurse practitioner who spent over an hour taking a thorough history and doing all the examinations to get to the bottom of my symptoms.

Each of these individuals endeavoured to understand as much about chronic cluster headaches and more specifically MY experience of MY cluster headaches.

I can’t praise them enough, both the A&E staff and the ward staff were amazing. These are some of my favourite examples of their high standards of care.

“You truly are an expert patient… thankyou” (the nurse practitioner in A&E)

I know now what my ‘normal’ pulse, BP, temperature etc. are. They are not ‘normal’ but to me at least I can identify what is abnormal for me. I know how to describe the ‘normal abnormalities’ on my ECG and I know what my lithium levels normally are.

I take an interest, I ask the right questions of the health professionals around me, I remember what I can and I write a lot of stuff down. I take pride in understanding my body and my illness. This helps when I see that look of panic on a nurses face when they see a pulse rate of 41 when taking my obs, I can quickly explain that while that is quite concerning it’s also very normal for me.

“So you have had chronic cluster headaches for the last eight years with very little respite… that must have been hell. You are doing well to still be smiling” (on call neurologist who examined me)

I never ever find this patronising. I love it when people say things like this, especially medically trained people. It validates my experience. Yes it has been hell, from the bottom of my heart, THANK YOU for acknowledging it.

“And you take lithium for…?” (everyone who took my medical history!)

If you looked at my medication list with no knowledge of my diagnoses you would forgiven for assuming I was diagnosed with diabetes, bi polar disorder, heart disease,  Parkinson’s, epilepsy and possibly others. I have none of these. But it can take some explaining! I carry a list of my medications listed under my diagnoses. I would recommend this to any cluster headache sufferer!

“I’m going to talk to a neurologist as to be honest I’ve never heard of any of your neurological conditions” (A&E nurse practitioner)

THANK YOU! HONESTY! Don’t pretend to understand when you don’t. If you don’t know, ask me, ask an expert but don’t make it up as you go along. I have the greatest respect for doctors who are willing to say ‘I don’t know’. Even my consultant who is an expert in Cluster headaches and and expert in my experience of Cluster headaches occasionally says  ‘I don’t know’…. Ok he says it quite a lot but I am quite confusing!

I think myself very lucky for this hospital visit.

I count my GP and Consultant blessing everyday!

I am the expert in my own experience of Cluster headaches. All I want is for the medical professionals that I meet to take their medical training and apply it to my case… I don’t and probably wont ever fit into a box.

I am a complex patient … but we all are … We are all human beings…that makes it complex.

 

“Thank you! Gracias! Merci! Danke schoen! Spasibo! Mahalo!”

This week is ‘National Carer’s Week 2014’… what a perfect excuse to say Thank you to those who take care of us.

They are amazing human beings.  I have Cluster headaches and other health conditions but those around me are living with it too. I am never going to get used to the idea that I need a carer. I don’t want one. I want to be free and independent. I want to have a wife not a carer but she is both to me and I’m glad she has willingly taken both jobs!

This is an unusual post for me, but I think its an important one. If you have someone in your life who cares for you maybe find 5 minutes this week to thank them for what they do for you.

 

 

But the word Thank you doesn’t cut it really… there is so much that is done, said, sacrificed and achieved as a carer. More than I really appreciate, more than our friends and family appreciate and more than even my carers can see.  The tasks undertaken by our carers are more than other people see… so much more that we want then to have to do, but without them our lives and our families would fall apart.

I don’t just want to say the words Thank you… they seem empty after saying them for so long. A card seems too boring/mainstream… so I’ve had my thinking hat on and I’m going to try and say thank you differently.

So today marks day one of my week of creative and inspired ways of saying thank you to the woman who has been my rock. Others have been a constant source of love and support she has carried me.

I can’t say (in this post anyway) what I have in store… but I hope it will go a little way to making her realize how much I appreciate her and her sacrifices.

First, I do want to publically say thanks for all she has done! She might not be keen on this public declaration of my thanks, but without it, how will people know all that she has done with and for me.

Dear Shell, my wife, my best friend and my carer.

I need to Thank you… there are so many things you have done for me, sacrificed for me and supported me through, I hope the week ahead goes some way to me showing you how much I appreciate you and everything you are and do.

Time … There have been days and weeks and months where I have spent every day in attack after attack after attack… yet every time I open my eyes there you are. You must have been bored to tears but you never left my side. Thank you Shell.

Emotional punchbag …when life gets too hard for me, I take it out on you. You are my emotional punchbag. I have said things to you that I regret, I have said things that hurt you and I am sorry. I thank you for not walking away, for not turning your back, when many other people would have done.

Love… We fell in love when I was 20.  I was a  youthful, adventurous, determined and loving ‘girl’. I was a little older and wiser when I was diagnosed 6 years later, but the woman who stands before you now is a million miles from that person. I’m Physically so different, I’m riddled with side effects, weight gain and exhaustion. I’m mentally broken, I see the world differently, I see me differently. Bottom line, I’m different. You still love me. You still look at me the same way you did 14 years ago. Your love is better than any drug that the NHS has ever found for me. I love you too. Thank you for loving me Shell. I love you for still seeing the girl you fell in love with … you make be believe she is still in here somewhere!

Sacrifice’s…I can’t list let alone count all the sacrifice’s you have made for me. You have missed out on so much. Your career, your education, your own health. I know It doesn’t ever make up for what you have lost, and you miss the things missing in your life. You have not been doing nothing, you have not achieved nothing with your life. You saved my life, on more than one occasion. I would not be here without you.

Tablet duty… you have sat and sorted my tablets for hours on end making sure I have a constant supply and more importantly that I take them even when I have rebelled against them. The course of my illness could have been different without this care and diligence.

Acceptance… You, from day one believed how bad this illness was. You have never dismissed any sign, symptom or mood. You take it seriously when it is serious; you calm me when I’m over thinking or over emotionalizing it. You have let me go on my own very personal journey, but you have been there at every step accepting and living this illness with me.  Your patience and understanding have been pillars of strength to me.

Still being here despite it all… I have told you to leave; I’ve asked you and begged you to leave me, probably 100 times. You could have had a very different life, you could have had all you dreamed of… but you chose to stay in this life with me and my illness… I’m so glad you stayed, if im honest I never wanted you to go, I just wanted you to be happy. I am trapped by this illness, you are not. You stayed out of love… I love you xxxxxxxx

We have created a home, a relationship and a life that is growing and changing and is filled with love, patience, acceptance and giving. Our future is so exciting Shell.

Love always

Me xxx

This week there is also one other special person who has been my full and part time carer at different times over the last 8 years but she has been my mum for 34 years!

My mum must have clocked up 10’s of 1000’s of miles driving me everywhere I have needed to be! Her poor car… her poor petrol bill … her time… her patience. She has also been an emotional rock for me and for shell. You always know what to say, to make us feel better or gain a little perspective.  The multiple sacrifices that you have made, financial, practical and other things have never once been mentioned… Thank you mum. We love you and dad so so much too!

Every day 6,000 people take on a new caring role in the UK. Up and down the UK there are 6.5 million people caring unpaid for an ill, frail or disabled family member or friend. These people are called carers but they would probably say "I'm just being a husband, a wife, a mum, a dad, a son, a daughter, a friend or a good neighbour." (http://www.carersweek.org/about-carers/what-is-caring graphics also from this website)