living your life... the best we can

Life is such a roller coaster with this illness. I have been having some good days recently, some really good days. Some days with clear daylight between attacks where I can be in charge. I have adapted so quickly...crazy quickly… to feeling well. I have an action packed routine every day now that starts at 5:45am as soon as my attacks finish and goes through to the next pain!

I’ve got so much ticked off my to do list in just 3 weeks

Inevitably, with the 40 mins to 2 hours’ sleep a day that that has been giving me, on the back on months of being ill 22-24 hours a day my body is now rebelling. After just 3 weeks of ‘life’, I’m ill. My Cluster headaches are starting to creep into MY space in the day time and I’ve had 3 infections this week alone and woke up today with a raging sore throat.

I can’t sustain being ill all night and living all day

But I refuse to sit and rest and sleep during the pain free times… I want to be living and enjoying the limited time that I get blessed with good health. But 3 weeks is about my limit. It’s at this point that despite having sticking to my meds and charging routine I realise that in the balance of my life my health needs more attention. I need to rest more (I HATE THAT!). I am very focused on eating healthily at the moment but sometimes I forget to drink enough so that needs attention. But rest is the main thing.

Pre Cluster headaches I lived life at 100 miles an hour and I forget that the good days now can’t be lived at the same pace. It so unfair though, when I was living my life like that, I had plenty of time to rest… I could rest anytime. Now I can’t rest when I’m well… it seems like such a waste of ‘good’ time. It’s all in the balance of things. If I live life too fast I end up feeling like I do today, curled up on the sofa under a blanket with a number of infections, feeling rubbish, when I had a lovely day with my wife planned.  

There is a balance to be found… time to rest, time to be Katie, time to stay well by eating, drinking and medicating the best I can, fun, exercise and a social life. I thought I had found it…but I’m so run down its silly.

This illness is not just a headache, the lethargy and exhaustion is all consuming. I don’t mourn my old life anymore; I grieved for it a long time ago. However I feel lazy, or that I will be perceived as being lazy if I make time for rest. I want my life in between pain to look like it used to; but it cant.

In order to make the most of this good time that my neurologist and I have worked too hard for, I need to get the balance of my life right. However after 8 years of living with this illness chronically I am yet to find the right balance.

I can’t do this rollercoaster anymore… I need to find the wellness balance for me and my family.

The worst pain I have ever felt…10/10

Hidden conditions are frustrating… you have to tell someone, including the doctor how you are feeling and what is going on. I wish there was a magic devise like a scanner, or a blood test that would explain what is going on in my body.

Pain is the main symptom of Cluster headaches… reportedly it is the worst pain condition known to man, for those who have experienced both childbirth and cluster headaches they say that CH is more painful. I’ve watched ‘one born every minute’ everyone copes with the pain of childbirth in a very different way! I’ve also seen videos of people going through a CH attack, including myself and I can say that we also cope differently too.

I’m very quiet…I rock, kick out, bang my head with my fists, slap my face, push my head against cold hard surfaces. I hate to be seen like it… very few people have and will see it.

But that experience has to be qualified and quantified when I see my doctor. He asks the usual questions? How much does it hurt on a scale of 1-10, where does it hurt exactly? What else is happening at the time? How long does it hurt for? How often am I in pain?

I understand that without this information my consultant doesn’t know a) what’s wrong with me b) How to treat me

But what I really want to say is…IT JUST HURTS! Like no pain you would ever know! It just hurts in my head and it lasts for what seems like forever. When you are in that much pain you don’t stop to analyse it. In fact you do the exact opposite; you have to focus on anything but the pain. I have developed very good coping strategies that involve very much ignoring the pain the best I can.

I often hear and see friends talk about being in pain with toothache or a twisted ankle and I’m sure would describe their pain as a 10/10. I’m not saying that they are not experiencing pain that is the worst ever but surely it wouldn’t be a 10/10 to a cluster headache suffer who experiences ‘the worst pain known to man’ on a daily basis.

I broke my foot last year and when the DR in A&E asked me on a scale of 1-10 how much it hurt…and it did hurt!... I said a 4-5. He was shocked until I explained that I am a CH sufferer.

Pain is so objective… it’s based on your own tolerance, your own pain experience, your coping strategies. I hate describing my pain… obviously I want to have accurate diagnoses and best possible treatment but I genuinely think I would report the same pain differently from one day to another depending on factors such as how much sleep I have had, who is with me and how many attacks I have already been through that day.

What if I am not consistent when reporting my pain? I am sure there is no consistency across the population of cluster headache sufferers! What one of us describes as a 9 another may describe as a 5.  This is a real challenge for the doctors…it also is a challenge for me… I have described the pain the best I can and as a result have been diagnosed with cluster headaches; paroxysmal hemicrania; and, hemicrania continua. Of course I trust my consultant’s diagnostic skills but what if I have misled him and may have something different or something else? I don’t know if I report the level of pain accurately, maybe there are other treatments that would be more appropriate or more effective.

So much of the diagnostics are left to me… there are no blood tests or scans of my dream scenario. All the therapeutic decisions are made based on my version of events, which is a lot of pressure! I am lucky that I know whatever rubbish falls out of my mouth will be interpreted by one of the leading and best headache specialists. What if the person you are seeing doesn’t know one headache disorders unique presentation from another? What if you haven’t got the ability to communicate?

How do you communicate this pain to a doctor in A&E, a doctor who sees patients with traumatic injuries every day who of course say their pain is 10/10… which makes sense… their leg is broken and the bone is popping out.  Then their next patient has a ‘headache’ and is also saying their pain is 10/10.

As a psychologist I developed scales and measures for things like, quality of life, family functioning and locus of control. I know how a standardised pain scale, such as the KIP scale, is both useful and practical.  But does it really tell you anything? Is it not more of an indication of your perception of pain as opposed to a measure of actual pain? But then surely pain can only be measured as we perceive and experience it.

I think my perception of my pain had evolved over time having had 33 years of pain experience especially the last 8 as a chronic cluster headache sufferer. It depends on my mood; my sleep state; my location; my experience of being pain free (when you are pain free and pain strikes again…for some reason the pain is worse!)

My reporting of my pain is affected by how desperate I am, how much ‘pain free’ time I have had to reflect on the pain I am having.  My answer of “I’m fine’ or ‘I’ve been ok” is now met with a look of concern by my consultant as this normally means I am anything but fine or ok.  But who wants to give in and concede that the beast has beaten them… not me!

Pain… it is our curse… it is hard to describe what it feels like; impossible to measure; and apparently impossible to get rid of!!!

More knowledge is needed within both the general and medical population, and more research is needed into this horrific and often ‘all consuming’ condition. In the mean time we do the best we can to explain the pain we are feeling in order to receive the best treatment and advice to try and manage our pain, ultimately striving for a pain free day!

What the numbers say...

Just a little food for thought... not all stats are current as we are not the subject of much research, but they still tell a story

0.1%   of the population have cluster headaches

21% of patients are given the correct diagnosis at their 1^st appointment

5 years is the average time between onset of symptoms and diagnosis

10-15% of Cluster headache patients are chronic suffers

6 men to each woman who are living with cluster headaches

4 hours of undergraduate medical education is given to ALL headache disorders (worldwide average)

22%-55% of chronic suffers report suicidal ideation (depending on what research you look at).

100% oxygen at a high flow rate is needed to treat Cluster headache attacks

20% of Cluster headache sufferers in the US reported losing a job as a result of their Cluster headache.

8% of American cluster headache suffers are unemployed or on disability.

0.004% of hospital appointments in England (485) were for cluster headaches. This is 12 years old.

The darkest of times ...

There are many side effects and consequences of Cluster Headaches (CH), sometimes they affect my life as much if not more than the pain itself.  However,  the more friends I make who share my fight with CH the more I meet who are also fighting mental health problems, mainly depression, anxiety and panic…Just like me.

This is major heart on my sleeve time… but it needs to be said.

Over the course of my journey with CH there have been dark dark days, for me and my loved ones. Those around us may not share our physical pain but they certainly come along for the emotional journey. This is my story, every journey with mental health is different , but I think others may see their story reflected in mine.

The battle to get diagnosed, the battle and balance of finding the right treatment, the ongoing war against the pain, the side effects and the medical system in general. The list continues with financial worries, employment issues, a lack of understanding in the medical and general community … Is it any wonder it got to me in the end.

Personally I have experienced depression up to and including making a suicide plan, anxiety including panic attacks and a fear to leave the house and have at times self-harmed. I’m a qualified social worker with a psychology background, I spent a lot of time over the last 10 years working for a national charity who support those living with mental health problems and dealt with a lot of young people in crisis…. But I couldn’t help myself.

Sometimes I kept these feelings to myself… These times were the darkest by far. There is nothing worse than these toxic thoughts in a deep dark hole when you are all by yourself. You are desperate to find a way out, but without someone to help you, you just dig yourself deeper. The only way I ever got out of this hole was to open up and talk to someone. This was usually when things hit crisis point. I have enough tablets in my possession to kill all the inhabitants of a small town…If I wanted to kill myself I have plenty of opportunity but something has always kept me tied to this life that I love.

Other times I confided in my wife, my parents, my siblings, my extended family and friends. But this is hard. It’s a balancing act. Those who are closest are already shouldering so much of the practical and emotional burden, as such they are best placed to understand how you feel as they see it every day, but you are desperate not to burden them anymore that you need to.

I leaned more on 4 or 5 people in particular and that in itself after 8 years makes it really hard to keep going back to them with not only CH drama but mental health concerns too… I really felt like Eeyore with a dark cloud following me that people got dragged into if I got too close. So you isolate yourself so as not to hurt others with your hurt. This takes you back to dealing with things by yourself which I’ve already acknowledged is scary and unsafe.

Then there are the people who are a little further removed from your situation. They sadly or not depending on your point of view, are not aware of the true hell that is CH and therefore,, in my experience are keen to comfort you with statements like ‘At least you are still breathing’ ‘It could be worse’ or ‘when my friend had migraines…’ (AAAARGH). They mean it with the best of intentions but, but well it’s not  helpful.

So I adjusted my coping strategies, I call these people when I need a distraction; I need to talk about anything but what I’m going through. I rely on these people to make me laugh when I need to smile and make me remember the good things in life. I think that’s such a common misconception that people with depression can’t be happy. Yes there have been day’s, weeks and months that I thought I’d never be happy again. But I always am. Depression is a sliding scale and you shouldn’t have to justify where you are on that scale. Just because I’m laughing with you today doesn’t mean that tomorrow I won’t be sitting in my bed unable to see anything but the dark cloud over my head.

I’ve faced my demons, with friends, family and professional support. I am no longer ashamed to admit that alongside my physical health conditions. I have depression and anxiety. All of these things are part of me. I need to be aware of them, the impact they have on my life and the impact my actions can have on them. I am proud of my coping strategies… I have them in abundance and as long as I stay calm I can utilise them. I can’t thank my counsellor more for helping me develop them; they are my toolkit for daily life.

This is just the picture of my roller coaster. One day I’d like to write all of this down, saying exactly what I was thinking, feeling and doing. For now I just wanted to acknowledge the other fight in my life and to be proud of who I am… including all my perfect imperfections!

Never suffer alone… please!

For people in the UK (I’m sorry that’s as far as my expertise can go)

The Samaritans (24/7):

08457 909090

Ouch:

Helpline

01646 651 979

or overseas

+44 1646 651 979

“The Ouch (uk) helpline is available 24 hours a day 7 days a week.Please leave your name and telephone number,preferably a landline number,and your call will be returned as soon as possible.
All calls will be returned between the hours of 10am and 2 pm by one of our trained helpline team.The helpline is monitored throughout the day,and if your call is of an urgent nature we will contact you as soon as possible outside of normal hours.
We fully understand that some people would prefer to contact us via e.mail.If you would prefer this method of contact please e.mail helpline@ouchuk.org.”

 

 

 

 

My bank holiday curse…

We are blessed in the UK with free GP services, Free emergency A&E departments and even a free phone number to call if you are not sure what help you need or what may be wrong with you. I have a great GP and can talk to them about my concerns. I am a proud user of the NHS… I certainly get my monies worth.

However, a handful of days in the year, you can’t access your normal services as we celebrate bank holidays. It all shifts to the out of hour’s service, which for us means an hour’s journey to the nearest centre. The thing is my body didn’t get this memo!

It’s almost a standing joke now that I will always get ill on a bank holiday. Previous issues from the last couple of years include chicken pox, oral thrush from steroids, needing steroids for my CH, Measles and a chest infection.

On May the 4^th this year (which I can only assume is Star Wars holiday) I was feeling fine, sure that the curse was broken. I was out for a drink with a friend when I was called in to hospital due to an abnormal blood test and was admitted for the entire weekend. Boo the curse strikes again. Diagnosed with a scary lifelong illness…not the day at the beach I had planned.

This weekend is my favourite bank holiday weekend as it always falls near my birthday(which is on Thursday if anyone would like to know! He he). Again feeling fine I started the weekend on Friday diligently undertaking my aunty duties by having my 3 nieces for two days. I did the second day by myself as my wife was feeling rubbish. The kids were picked up at 6pm and by 9pm we were at the emergency doctors and I … yes me! … was being told that I have multiple infections and needed anti biotic’s. If I get sicker I have to adjust my medication for my Addison’s. We only rang because Shell was ill… not me.. NOT ME!!!

This was my reaction by midnight last night… why me? Why does it always happen on bank holidays? And how can I keep plodding along running round after 3 kids without even noticing that I have multiple infections… I know mums everywhere do this everyday… but I can afford to get ill, not without noticing it! So I did what any 33 year old (enjoy saying that while I still can) would do… I called my mum and cried.

I am sick and tired of always being sick and tired… I’ve even started getting infections that people have to google as they are so random!

So today & probably tomorrow I’m on an enforced DUVET and DVD day! We both are. Any suggestions for good films please let me know.

Oh and if anybody needs me in the August bank holiday … I’ll be enjoying the sunshine somewhere!!!!!

My other marriage.

I have been happily married to my wife for nearly 4 years with 14 years together under our belt. I wouldn’t say it was perfect but for us it is… the sun has not always shone on our life but we have been cosy under our umbrella while the rain has fallen around us.  

I do however have another marriage, one that I didn’t enter into in the same way as my ‘conventional’ marriage.  I didn’t choose it. I didn’t want it. At times I felt violated by it. Now… well now I live with it.

We make it work, most of the time it’s harmonious. Whatever happens we are in it in sickness and in health til death do us part!

My other partners name? Cluster Headaches

Like most relationships it took time to perfect the dance we do as a couple now. Once I had accepted it was here to stay, which took time and counselling, my counsellor introduced the idea of a relationship with the illness. At first the idea appalled me. Like I said this ‘thing’ had come into my life uninvited and had ripped my life apart from the inside. But it was staying, there seemed very little anyone could do to make it go away so I embraced the idea.

Now we both have our own commitments to the relationship.

My vows include; remaining hydrated, taking all my medication, resting when I need to, eating when I need to, and making sure I always have a supply of oxygen, not over doing it and lots more…

Cluster headaches commit to being predictable, sticking to its ‘normal’ attack times during the day, it agrees to respond to oxygen and leave me alone the rest of the time.

Most of the time we do this dance well, then something will happen. I will overdo it, not drink enough, or miss a dose of meds. Then cluster headaches will repay me by acting up, attacking during the day, knocking me out for hours. I respond appropriately by not doing that again for a while… I become super-efficient and compliant. And our relationship is harmonious once more.

Then there are the times that I’ve got plans and for no reason cluster headaches sets out to ruin it. I then rebel as an act of defiance (yes you have guessed what comes next). I rebel by not taking my meds properly, not taking care of myself (yes I know… I’m apparently an intelligent woman; surely I know where this is going!) So I get sicker and go back to being super-efficient and compliant. Once again harmony is restored.

So it’s not a conventional relationship, it’s probably not the healthiest of relationships, But I have made a lifelong commitment to treat Cluster headaches with as much respect as I can muster and I genuinely believe that for the most part my cluster headaches are trying to keep up their end of the deal too.

I get angry, wow do I get angry. I hate the attacks, the pain, but that’s only a part of the condition like the bad habits of a person you live with. This condition is my lifelong companion, we’re not perfect but we make it work. It may have hurt me, but it’s also made me the person I am today, strong and determined to make a difference… see it’s not all bad.

A Pain free minute… hour ... day…

Pain free is something that most people take for granted. I think what a lot of people don’t understand about Cluster headaches is that it might be the worse pain to man, acknowledged as more painful than childbirth. But we don’t just do this once or twice like people go through labour. We do this for hours and days, weeks, months and years at a time.

It doesn’t stop… well it does, sometimes, but for those of us who are chronic sufferers the pain free moments are few and far between. I have been chronic for a long time, so can only write this from my point of view.

Chronic means that it doesn’t stop, compared to those with episodic CH where they have periods of illness and periods of remission.

 For me, the pain and the attacks that I feel are the norm. They are horrific, the pain is unbearable, but despite this I don’t measure my life by the number of attacks I have each day. When I sit down and work out how much of my life I spend in pain, it shocks and upsets me; maybe that’s why I ignore it!

I measure my life by the pain free moments. Those brief moments when the pain is gone or manageable…those even rarer moments when you for a brief amount of time forget that you are ill. I have a jar in my front room. Its full on scraps of paper. On each piece of paper is a good memory from this year. We are only 6 months into the year and it’s looking good so far … that’s what I want to show my doctor when he asks how successful my serial multiple cranial nerve blocks were when I see him in September.  I want to tell him he owes me the money for a bigger Jar!!!

But here comes the ironic bit.

After successful treatment this month, I now have 10-12 pain controlled hours during the day…bliss… space to live… actually be alive. But then at 9:45pm every day they hit me like a ton of bricks. I have so many coping strategies to cope with the pain, I wouldn’t have survived without them. But last night all that was useless. I sobbed through the whole thing, desperately telling my wife how ungrateful I am that I’m getting so much pain free time but I’m so angry and upset when it still hits. This is the only downside to having a regular pattern of good times… they make the bad times even worse. When life is just a case of bouncing from one attack to the other, which I have done for months at a time, you get used to it… its hell but you get used to it. When you see a little daylight between attacks though, the pain seems to hurt just that little bit more when it hits.

Life is valued by the good bits… the pain free moments…. The fun and adventures that I get to have with the people I love. I don’t count the attacks; these good moments are the true indicators of how my life is going.

 I’m looking forward to buying a bigger jar!

Drugged up to the eye balls:

I know I take a lot of medication; there is a huge box at the end of my bed that reminds me of it daily. Three things serve to remind me that these drugs are not a walk in the park

• I carry two cards to warn people in an emergency that I am taking two separate drugs; one lifesaving and one that be fatally toxic
• I have a barrage of testing to monitor the extreme side effects, from regular blood tests and ECGS to the instruction to attend A&E if I have concerns.
• Lastly, my GP and pharmacist have both said to me ‘I have no idea how you are walking up straight and talking on this amount of meds’ (neither do I but please take 5 mins to marvel that I do!)

For those of you in the know, I take the highest doses I can tolerate of pregabalin, lithium & verapamil as well as pramipexole and hydrocortisone.  Then when times get really hard indomethacin & prednisolone when needed. Not all of these drugs are friends with each other so I sometimes feel like a preschool teacher trying to make them all get along!

The main side effects for me have been mainly cardiac. You never forget the first call you get when your consultant himself rings to say your 24hr ECG study showed that your heart had a number of brief pauses overnight… It did what sorry? Is that safe? Am I ok?... then when you get off the phone, your legs go from underneath you and you sob for an hour.

Now my meetings with the neurologist and/or cardiologist are more based on ‘so the pauses are no more frequent and no longer than they were… good… then let’s carry on as we are.’ Have I become complacent? I don’t think so, if I stop to think about it long enough it scares the wotsits out of me. I think I have become used to it… my 45bpm heart rate was the focus of much intrigue during my emergency admission last weekend, but that’s me, that my new normal. If it was ‘normal’ there would be more cause for concern. It did serve to remind me that that’s probably part of the reason I’m so tired all the time.

Many of you who know how ill I still am regardless of this drastic drug regime will wonder if it’s worth it or not… IT IS! I’ve tried to not take them, I argue with shell at least once a week and beg her not to make me take them… but I know what happens when I don’t. The hell I experience without them makes today look like a holiday in the south of France! My only sadness is that the combination of medication I’m on makes pregnancy impossible for me (a topic I’m sure I’ll tackle on here when I’m strong enough). People questioned why I didn’t stop taking the medication, even if it was just for 9 months… simple, without them I may be able to have a child but I would not be able to be a parent.

I couldn’t tell you today what side effects are what drug or even if they are the drugs. I know you would be hard pushed to find another person who takes the same meds as me for the same amount of time, in the same doses for the same condition to tell me what the long term effects on my body are likely to be… but I’m not thinking long term…you cant.

I trust (because to do this you have no choice) my neurologist and I trust pharmaceuticals. I’m educated enough, I grew up the daughter of a biochemist and I studied psychopharmacology at university, I know that all medications are just merely helpful toxins. Apart from the steroid’s I take to replace the steroids not being naturally produced everything else I take is not supposed to be in my body.

I’ll take the tablets, I’ll get injected in the face, I’ll sit with an oxygen mask attached to my face… I’ll do anything you ask, just take the pain away… Please.

A patchwork quilt:

 

Labels can be really helpful. I’m on a diet at the moment and reading what’s in everything helps me make healthy choices. However you don’t have to look far to see the negative effects of labels… apartheid for example.

Some of the labels attached to me I am very proud of… Im a daughter, a wife, a sister, a granddaughter, a niece and a (kick ass) Aunty.  I’m a proud Arsenal and Carlisle United fan; I’m a proud supporter of the English football team and the Irish rugby team (don’t ask… dads fault!). I’m a social worker and a psychologist…. The list goes on.

But there are some labels I would quite happily give back… a cluster headache sufferer, a steroid dependant person, a stimulator patient, obese, anxious, depressed.

I feel like a patchwork quilt put together of labels… I feel like people can’t see Katie anymore just the labels that cover me. As the labels get more and more negative I’m scared people’s perception of me will change. I’m not saying this illness hasn’t changed me, it has. But not all for the bad, this illness destroys, lives, bodies, relationships, careers but it builds warrior’s, strong people who refuse to give and die when often it feels like the only option.  I’m lucky that my consultant still sees a person underneath and is desperate to let the rest of the world see her, sometimes he remembers and focuses on that more than I do... of everything he does, I hope he knows how important this is to me.

I want to be me again, with just the nice labels. The addition of a recent label or two has made me think about this a lot. I hate the fact that if I walked into an a&e (ER) the sheer number of diagnoses, issues and side effects of medication would mask the fact that a real life person was lurking underneath.

I try my hardest to highlight the good labels. To be the best wife I can be, to take my nieces and nephews on fun adventure, to listen to my sisters and my friends when they are in need. I’m hoping to watch the FA Cup final on Saturday without the assistance of oxygen and I want to use my education and qualifications for good.

I get frustrated when every conversation I have is about being ill in some way… but there are times that there is very little else in our lives. How can I expect people to see past the labels when they do in fact define me?  When people call and ask, how I am, how the treatment went, when’s my next appointment, I get upset wishing they would ask me how my night out was last week or when I fancy meeting for coffee. BUT if they call and don’t ask how I am, to me they no longer care and could be bothered to ask… Don’t worry my lovely wife has pointed out that this puts people in an actual impossible situation… its hard work being my friend… which is what makes our friends all the more special!

How can I get frustrated at being simply a collection of labels when that is what I am? There are days, weeks and months of the year, when I simply exist while my pain and other issues rule. I know we are all defined by our labels… I just wish that the majority of mine were positive to me. When people look at me I want them to see a wife, a caring person, an aunty, a sister… and dare I dream … one day a mum.

Steroids… friend or foe?

I hate steroids. They ruined my body, They ruined my body image, they made me a little ‘bat crap crazy’ at times. I will avoid them at all costs.

I am grateful for steroids. On many occasions they have been the only thing that has saved me from endless pain. Despite the negatives I have no doubt that steroids saved me from death, or at least saved me from a suicide attempt.

On the balance of it I wasn’t sure what was worse, the pain going untreated or the devastating long term effect that these drugs had on my weight and happiness. Don’t get me wrong it wasn’t just steroids that led to my weight and body image issues, it was the illness itself limiting my mobility & independence and compromising my mental health.

From diagnosis to the current day which is 8 years, I have gained 8 stone. That’s hard to admit… hard to acknowledge and even harder to look in the mirror. But in the last 8 weeks I have lost the 1^st 2 stone of my goal to shed 9 stone. But that battle will be the topic of another post I’m sure.

Beginning this fight against my weight in the last 2 months I would have done anything possible to avoid steroids, even tolerating the worse pain known to man. Such is my drive to get fit again and also my ‘hatred’ for steroids.

But last weekend… all that changed

Steroids are now my friends (well mostly). Last weekend I was diagnosed with a condition called secondary Addison’s disease. In basic terms, this means that my body is not producing the natural steroids my body needs. Without taking oral and injectable steroids for the rest of my life I would die.

Until the 1940’s this medication did not exist, and people did die from Addisons Disease… Jane Austin being a famous example.

I cried my eyes out last weekend when the reality of a long life with steroids was thrown at me, but as the week has gone on I have acknowledged the fight in me to loose the weight despite the steroids. More importantly I am concentrating on the ‘long life’ – this time in a very different way steroids are going to save my life… how can I be too angry with them!?

Multiple cranial nerve blocks

I am currently having a treatment called multiple cranial nerve blocks. This involves 3 injections just above my eye, two around my ear and two at the base of my skull at the back of my head.  Needles don’t bother me, medical procedures don’t bother me… I had my stimulator fitted while I was awake… I’m that hardcore! However these injections sting like a bitch (pardon my language!) my neurologist told me I was being very brave. I told him that when he does something to me that is more painful than cluster headaches I will kick him in the shins…. I nearly kicked him in the shins!!

The injections include a local anaesthetic and a dose of steroid. The idea is that is blocks the pain message in the nerves that are injected. I used to have these injections in one of the nerves at the back of my head called the greater occipital nerve, this used to give me anything from no pain relief to six weeks of pain relief. I can’t have those injections anymore because of my stimulator which is located in that nerve now and a nerve block may have an impact on the leads that are sited in that nerve.

So I went into this treatment knowing roughly what to expect both in terms of the procedure and also the potential benefits.

I had forgotten quite how much it hurts, but for the 30 second each injection takes, which is hell, the pain stops as soon as its finished. The back of my head in particular is bruised at the moment making sleeping hard and moving my head painful, but I remain optimistic that this might help… so it’s worth it isn’t it!?

But we don’t know…. We don’t know if it will work. My neurologist is taking a new approach at the moment by repeating these injections a number of times in quick succession. We are about 2 thirds of the way through, and if I take the time now to think about the impact the treatment is having, I would have to say it’s largely positive.  

The different types of headache disorders that I have that may or may not be responding to the treatment make analysing this quite complicated but I would say there has been a reduction in the frequency and level of my attacks. As I’ve said in previous posts, there is so much more to living with this illness, such as muscle weakness and language problem’s, so considering the impact on this part of my condition is a factor too.

I am confident that this will have a positive effect, enough of an effect that this can become part of my regular treatment regimen… despite how much it stings!

The expert patient

Living with a chronic illness of any sort is tough. It infiltrates every aspect of your health and your life. There is only one person who can truly define the impact that this illness has on your life… YOU! No doctor can, not even if they suffer from the same illness. We all experience cluster headaches differently, our illness varies, our bodies vary, our work, family, relationships etc... are all unique and we all live in different parts of the world where life is different.  

In the UK there is an expert patient programme. Courses you can take to make YOU better equip to handle your condition and the impact it has on your life. I support this 100%. With a background in health psychology I strongly believe that we are the experts and we should be empowered to know all we can.

In the case of cluster headaches, the medical information is limited for the vast majority of doctors, It’s a bit of a mystery to those who are experts in the condition! So faced with a GP or emergency doctor who doesn’t know anything, or very little about CH, what do we want? I certainly don’t expect them to excuse themselves to go and read everything ever written about CH. All I ask is that you respect the fact that I know more about my illness than you do.

I met a new GP yesterday, I’m new to the practice and getting to know their level of experience with CH patients gave me a lot of anxiety. I never was an anxious person, and even to me it seemed ridiculous that swapping GPs was such a big deal, but when they are your first port of call and your day to day support, it really matters. However I realised yesterday that it doesn’t matter what he knows, the fact that he asked me about each of my meds and their impact, how I was coping right here and now on that day and what could he do to help. That’s what counts… doctors who are willing to admit they are not all seeing and all knowing, doctors who appreciate you are the expert and doctors who care. It makes this journey through hell easier.