All I want for christmas...

So here we are, it's Christmas Eve 2014. I have had a rough couple of weeks with regard to my CH and (more) complications so was feeling a little bit sorry for myself which always makes me a little bit thoughtful/emotional. Not helped by watching sad documentary's about the 2004 tsunami at 5am in floods of tears... but also crying at music, adverts and general day to day occurrences.


I know that there are worse things in the world than cluster headaches ... I cant think of many right now but I know that there are worse things out there. Its hard to get my head on straight sometimes to get everything in proportion, to see cluster headache as a part of my life not the whole, especially when they fight so hard for a dominant role.  But this Christmas I will be in the warm family home of my parents, surrounded by our family, with enough food, thoughtful gifts and love by the bucket load... And I will be sparing a thought for those who are not so lucky.


Before I get to the wish list for this festive period promised in the title of this blog, I wanted to say thank you. I wrote a blog post recently about my wife and I's journey to become parents caused a reaction we were not expecting. So many people offering, their love, their friendship, their support, their hard earned money and their prayers.


We were honestly so touched and overwhelmed and we go into 2015 with a sparkle of hope in our eyes that maybe this will be our year to grow our family.


So to my fairy godmother/genie ...


MY WISHES  *******

- For once, to wake us LESS tired than I went to bed - maybe with some sleep while I'm in bed?!?

- Pretty 02 cylinders - not the ugly things scattered around my house. I spent a lot of money on a beautiful bed and a gorgeous sofa only to accessorise them with black and white scratched up oxygen tanks with big plastic masks attached.

- A few guaranteed pain free hours a day, days a week or weeks a year. Just to be able to plan some precious time with my wife, family or even just time for me, to read a book for example. 

- More awareness of cluster headaches for me and my family ... My family support me, but the looks my poor wife gets when she says she is a full time carer because I have headaches if so unfair, after all she has sacrificed. I just want people to know what this really is.
- One tablet that does it all - with no side effects . I don't mind taking something, I don't mind taking it every day, but all the side effects that plague me can take a hike!

- A world with no triggers- even just for Christmas. Smelly candles, street food cooking smells, jingle bells, flashy Christmas lights... To name just a few of the little buggers that make life more complicated !
So there you have it ladies and gents... I don't ask for a lot. My list could be shorter, just one thing, a cure, but I know we are a long way from that... Maybe for next year, some of these wishes might even come true!
For this year, me, my wife, my family, my stimulator, my oxygen tank and I would like to wish you all a very merry Christmas, and to those who suffer any pain in their lives, I wish you a few hours pain free to enjoy yourself!

Merry Christmas xxxx

Incremental change not curative ideas

I don't think I went to the OUCH conference this year in London with any thoughts that someone was going to present to us a cure for cluster headaches...I'm not that naïve.

Alongside all of the lifestyle changes asked of me by my neurologist, I have explored every pharmaceutical option I have ever heard of for cluster headaches, not only tablets but injections, nasal sprays, nerve blocks and infusions.

I have had surgery too but every little change we make, drug we add, dose we increase, injection in the face... they all get me a little bit closer to a pain free few hours a day... not a cure.

Professor Goadsby, the leading CH doctor, talked in some detail about the medications that are available and are in various stages of development. He stated that current medications are all very poor. I am inclined to agree with him 100%. But as  chronic intractable patient, meaning my particular brand of cluster headaches doesn't respond to existing treatment, of course I agree.

From my understanding though, none of these drugs were developed for cluster headaches... we stole them from migraine, mental health, cardio vascular medicine and epilepsy to name just a few. On a recent trip to hospital my medication list led a Dr to assume I had epilepsy, diabetes, Parkinson's, heart disease, bi polar disorder... I have none of them!

I don't expect to find something that eradicates CH from my life. I don't expect to ever have a pain free life... I want a cure and I want a pain free life but I am old enough and wise enough to know that its not going to be a possibility in my lifetime.
Ill stick with it, ill keep trying new things, adjusting the doses, enjoying the pain free moments it affords me.

Where I struggle most of the time is the unwanted side effects. Medication was once described to me as a beneficial poison. Ill credit my dad with these words of wisdom but I'm pretty sure he stole it!!

What I was probably most excited to hear at the recent conference is that there are medications in the development stages that will take away some of the side effects of the medication I am currently on. Rather they do the same thing as my current meds but without the complications.

I worry what the long term effects of my meds combo might be. No one knows when I ask them, it's an odd combination and I was fairly young when I started out on the journey with them. To know that some of these side effects may be eradicated is really good news... Maybe I'll be able to get my heart rate higher than 60!

Baby steps... Less pain, fewer side effects, brighter future.