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CH Brain
Ex Member
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Hi to all,
I am a long time reader of the site; this is my first post here.
I am Male, 37 years old, from Australia.
I am a big fan of Batch’s posts here and some occasional pieces of wisdom from Mike NZ that crack me up when I need a laugh. I don’t really know much about the rest of you.
Firstly, I should point out that I have been driven perhaps slightly more than a little mad by a lifetime of CH, drugs used to treat it, their many implications and complications.
I am writing mid-bout, but not mid attack. I simply could not write mid-attack, the attacks are far too incapacitating. At times, when talking about CH, I can lack tact and diplomacy. I apologise in advance for this, but will do my best nonetheless.
I recognize that whilst I can be helpful, insightful and compassionate, I am equally capable of being surly, blunt, aggressive and everything in between these extremes. I do my best not to offend, but Cluster Headache is complicated. I can be quite expansive, it takes me many words to articulate a point and I am incapable of “dumbing it down” for anyone. For those with a short attention span or those who like their information delivered or “tweeted” in 160 characters or less – I am “old-school” and not your guy, best pass over this post then, as it will be lengthy.
As a newbie, I figure people will ask questions of me, so I wrote my story;
I have had CH since birth in 1975. One of my earliest memories is when I first presented in hospital at age 4 in 1979, too young to properly articulate my symptoms. Although I do remember telling the Doctor that the pain was behind my right eye. There were no tests; at my Mother’s suggestion my initial misdiagnosis at age 4 was food allergy, specifically involving artificial flavorings and colorings. My memory of headache as a child is of crying, with a severe right sided head pain behind my eye and my Mother coming to my bedside in the small hours with soluble aspirin fizzing away in a blue plastic cup. She consoled me and sat with me. She did her best with what she had, under the circumstances.
My childhood went on like this for years; more headaches and more aspirin.
How wrong the Doctors initial diagnoses were, there was no food allergy. I re-presented again in 1988 at age 12, where I was given a “Migraine” diagnosis and prescribed “Lingraine” (A now banned vasoconstricting Ergot-alkaloid) and sent on my way through High School. At age 14, I was given my first box of Panadeine Forte (Codeine and Paracetamol) for my “Migraine” pain. At that time Migraine was a very real part of the pain I was experiencing, and still is today but that diagnosis did not account for the sharp peaks in unilateral right side head pain, or the screaming and sheer duress of enduring severe, monumental pain levels.
I battled on like this, seeing dozens of GPs over the next decade, largely keeping my then “Migraines” to myself, unassisted by family, friends and any people of authority in my life; my schoolteachers, principals and Doctors. Most around me who knew of my condition thought either:
-I was lying
-I was “stressed” or tired
-I was avoiding something
-I was seeking attention
-I should just “get over it” and “on with it”
-I should take a pill and have a good lie down
Tragically in 2013, 25 years later, this story will still seem all too familiar to CHers out there, especially for the parents of children with CH. It was expected that I should simply “get over it” and soldier on, as everyone else had experienced a “Headache” or even Migraine in their lives at one time or another. Everyone was an expert, for everyone had a head and their own opinion on headache, based on their own experiences at one time or another. Everyone has had a headache, just ask them…
After many years of absenteeism and bailing to the school sick room for “Migraine”, I was universally dismissed as a serial truant and a malingerer. There were very few who had the compassion to listen to me explain my symptoms, which I was still too young to adequately articulate. My Grandmother, to her credit, would listen and give me a dark room with a bed and a bucket to vomit in, she had Migraine all of her adult life. To others, my “Migraine” condition seemed convenient for me. With hindsight I must admit, on a few occasions during my teenage years, I did use my headaches as an excuse to escape school when my deteriorated mental state clearly disallowed me to participate in activities. This is no surprise, as I now know that what I was experiencing was chronic CH, but nobody outside of my skull could really “see” a cluster headache. I could not participate in sports or team activities, so I sought solace in my music, a constant friend, always there for me. When in my teenage years, my family broke down and split apart, the last thing on my parents’ minds as they fought bitterly; was my Headache condition. I became a social pariah and outcast, largely left to my own devices.
Long after my schooling had finished and after many trips to many GPs, in 1997 I again presented at a major hospital with regular episodes of extreme unilateral head pain, always behind my right eye. I had recently experienced a significant ramp-up in bouts of unilateral head pain. I had a recurrence of seizure-like experiences with pain so intense, that it had left me unconscious. I awoke from one of these events and thought I had experienced a stroke or a brain tumor. I thought I was going to die. As things got worse, the pain escalated and I was typically experiencing 4-6 attacks per day, for at least 10 months out of every year, as I still do to this day.
In 1997, when I did present at the ER (A&E) at a major hospital, I was given a CT scan of my head. After a long wait, a Neurologist with little round glasses came to my ER bedside with a small bottle containing 9 white, bitter tasting pills, told me that I had “Cluster Headache” and left. Since my first presentation in 1979, this was the first time I had ever heard the term – “Cluster Headache”.
I peered into the bottle. The 9 white pills in the bottle he told me; were “steroids”, now what I know to be Cortisone 50mg. In the short term the 9 pills worked, but I was given no follow up, support or advice. I was summarily discharged. Soon after that, I went to yet another GP, mentioned the term “Cluster headache” and showed him the label on the bottle, a process I was to repeat many times. He mumbled something about Migraine, prescribed Pizotifen or “Sandomigran” and sent me on my way. I continued to suffer, alone.
I was on welfare payments, with an obligation to seek and attempt to maintain employment, in order to receive my measly sum that was to help pay my rent. The welfare agency would send me out to job interviews where I would most often land the job with relative ease, only to lose it within months to the “serial absentee” or “malingerer” label, yet again. I was a good worker, I was never actually fired; I just resigned, having caved in to the pain, or so it seemed. I was convinced I was weak. How could a “headache” do this?
A lot of “mutual agreements” were reached between employers and me that it would be best if I leave work to seek more treatment, most just thought I was nuts. There was an obligation from welfare that I get on with the job and hold down employment, or my welfare payments would be stopped, as they were many times. Doctors and Psychologists were of no help to me. The lack of understanding for my condition was universal. This put me out on the street more than once.
As a result of this, I became quite successful at hiding my condition as the jobs came and went. Using copious amounts of Deseril, I achieved many high standards in academia and employment, despite the pain and rebound attacks. I am not silly. My stack of certificates, qualifications and personal achievements is testament to this, never scoring less than 98% of available marks in any endeavor to which I turned my hand. I was considered a “good employee”, especially when I bottled up the emotion, soldiered on through the pain and leaned on medications to get me through a painful 4 day week at best. Australian culture back then rewarded bloody-mindedness in the face of any amount of pain. Stoicism was expected, ignorance rewarded. Nobody supported me and ignorance surrounded my condition. Even if people knew about the severity of my headaches, they universally thought I should “get over it”. So I remained silent about my condition for many years. With hindsight, I now know this was counter-productive. During this time, I worked with GPs and Neurologists to try to find a solution. I did everything within my power to conquer the pain. It is a miracle that I am still alive.
I exercised, walking and riding bicycles everywhere as I had no car.
I tried elimination diets, trying to find the culprit “trigger” foods or allergen.
I talked to GPs, Psychologists, Dentists, ear/nose/throat (ENT) specialists, Physiotherapists, Neck specialists, allergy specialists, Neurologists and finally; a Pain management unit. I had scans until I developed my own Nuclear half-life, nearly glowing in the dark.:) In the meantime, on my own I developed strategies and techniques to cope with over 20 years of misdiagnosed, untreated bouts of severe unilateral head pain. As many CHers have done before me, I trialed a list of drugs in doses that could kill most, a dozen times over. From many a GP’s ignorance in prescribing drugs that have no place in CH treatment, to many a Neurologist’s “shot in the dark”, to my own attempts at finding a solution in illicit drugs, right up to my current specialists, a Professor of clinical pharmacology, I have used over 70 different drugs in my lifetime for CH and related problems and still counting. I am aware that there are not 70 drugs with any known efficacy in CH, but this number includes anti-depressant trials, anti-seizure drugs, proton pump inhibitors for ulcers caused by Prednisolone, off-label and experimental drugs, anti-arrhythmia drugs to treat heart damage from Verapamil/Diltiazem, drugs to help circadian rhythm and many, many more. The CH treatment roundabout - you get the picture.
A lifetime of CH for me has never been an excuse to “cop out” of life and not participate.
At times it can be a bloody good reason not to do things, but I have mostly turned this on its head to my advantage, achieving despite or in spite of CH itself. I have no time for the “woe is me” attitude to life and CH. Although now unemployable due to chronic, intractable CH, I have become a highly accomplished musician, electronics engineer/technician and recently completed construction of my first valve amplifier and my first musical instrument, an acoustic guitar. I keep on learning, no matter what happens.
In 2006, I got very lucky, indeed. A highly qualified, skilled and experienced pain clinician and headache expert came to work at the Pain management unit and lecture at the University attached to a major teaching hospital in my home town. I don’t know why he is here, I am just glad that he came.
He is an intellectual and a pioneering legend in the treatment of Headache conditions.
From what I have read of him, he ran a headache clinic in the UK for around 17 years, I believe. His first contribution as a clinical pharmacologist to headache management was Zomig (Zolmitriptan). He has since managed the single biggest medical research organization in the UK, completing well over 600 clinical trials and presiding over 80 “first in human” molecular structures in the form of new drugs. After the Neurologists had finished with me, he was the first physician to try me on alternatives to and derivatives of Verapamil, Lithium, Oxygen, Ergot-alkaloids, Anti-seizure drugs and also, the first to prescribe Imigran injections for me. Over the years we have worked through many drugs together and discussed surgical options too, but with little success. My case remains intractable. Despite this, he has been a life saver for me, prescribing regular doses of much needed optimism. He educated me and encouraged me to educate myself on my condition and to better manage it. He suggested I write about it. I did.
Through a couple of emails I helped to get this specialist Pharmacologist and Batch’s heads together, hoping for clinical trials, validation and ultimately publication of Batch’s work with Vitamin D and the regimen in Headache Journal. (This is a work in progress, or may have stalled, I am unsure. We will see what comes of it…)
(Thanks Batch. The relief, even if not complete has been a Godsend)
After being encouraged to write, I went on to help dozens, possibly hundreds of sufferers of all headache conditions through web-based resources in Australia. My contributions to resources here I think, have been significant for a mere patient. However, I lack diplomacy and have alienated many with my sporadic and at times, confrontational approach. Many people have got the Cortisone induced “short end of the stick” from me, I apologise unreservedly. The many thanks I have received for the last 2 years work are testaments to the solace patients and I have found working together to help find solutions to their headache conditions.
I helped on another online CH resource to make accessible, telephone numbers for suicide hotlines, SANE Australia, Lifeline, GP direct health clinics and more, putting in place the disclaimers that urge patients to double check internet resources with their specialists and to educate both themselves and general practitioners (GPs or MDs). I shared my experiences with many CHers on my own experimental pharmaceutical trials and CH treatment procedures, putting in place links to all the available resources an Aussie CHer could hope for. I helped to create the Australian O2 supplier’s register for CHers in honour of Barry T Coles’ immense contributions to Australian CHers using O2. (Thanks Barry. I just found out 5 minutes ago that a friend saw Barry's death notice in the WA paper, what a loss. My condolences to his family and friends.)
I also provided localized information on practitioners and advice on “jumping through hoops” in the sometimes difficult task of obtaining medicines in Australia, things work very differently here than in the US. On many days, I have awoken to find an online crisis in newly diagnosed CH patients seeking help. Although at times lacking in tact and diplomacy, I have always done my best to get the correct information to patients and to offer them not only facts and resources, but hope and optimism whilst they and I both are under the duress of severe, chronic pain.
More than once, I turned down a Moderator’s position whilst working with CHers on the Australian website. This is not to take credit from those that moderate or administrate the site I was working with; everybody has pitched in and done their best in Australia to help CHers, but my usefulness there is over.
This by default, does not make me a self-appointed CH expert; far from it.
I am just another patient who reads a lot and leaves no stone unturned when looking for answers. My own experiences with pharmacological approaches and forays into researching the available headache literature have raised many more questions than answers, as we all know – the mechanisms behind CH and the drugs we use to treat it are not yet fully understood.
I hope to drop in here occasionally and post news on some relevant new advances in medicine for CH sufferers. I don’t want to be a forum regular. I don’t need my condition scrutinized or validated by others. My diagnosis of chronic, intractable cluster headache is very real. I am reminded of this about every 4-6 hours. I am in my 34th year of it and I know it well.
However, there is cause for optimism and hope.
There is some exciting research going on around the world and within Australia, with implications for CHers and sufferers of all other headache conditions worldwide.
I introduce my specialist; Professor of Clinical Pharmacology, Paul Rolan and his Adelaide University research team PARC. They are doing some amazing new work in chronic pain and Headache conditions.
The site won't let me post external links yet.
Perhaps add the necessary prefixes into your navigation bar of your web browser and these links will work. They are legitimate, as am I. It would be a shame to miss this info.
Cut & paste them, that should work just fine.
Sorry if I broke your rules peoples!
About Pr Rolan:
adelaide.edu.au/painresearch/headache/author/
Check out the site tabs on the left, headache research is happening!
adelaide.edu.au/painresearch/headache/headache_cluster/
Some exciting stuff on pain and glial cell attenuation going on right now in Adelaide University and pain management unit in Adelaide, Australia:
blogs.adelaide.edu.au/researchtuesdays/2013/01/11/breaking-the-pain-chain/
Breaking the pain chain.
Direct Video link: media.adelaide.edu.au/researchtuesday/video/RT_Feb_2013_streaming.m4v
Enjoy!
Pain free days to you all.
Thanks for reading.
Cheers.
RIP - Barry T Coles.
We won't forget your contribution, pain free at long last.
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