After 30 years, I've come to know clusters well and can get through the first 4 weeks now with coffee, smokes, relaxation exercises, deep breathing, self talk, prayer, gentle exercise, OTC painkillers, detriggering, emotional release, massage and patience. That's the first 4 weeks. Then they ramp up! However long they last after that is excruciating and, no matter what I do, I feel powerless to ease the pain. I think because by then I am so tired - clusters wake me up 20 minutes after going back to sleep from the last attack, over and over. I used to be terrified to sleep when I had them. Terrified of the pain I knew would come if I went to sleep. Now I figure I need to snatch as many minutes of sleep as I can before another one strikes. I find it interesting that when I don't have clusters I only have 1 or 2 cups of coffee per day or I get agitated but when I have clusters I can have (and have had) up to 12 cups with no agitation at all, just relief from the pain.
The medications I've been prescribed over the years have been ghastly. I've had all of the anti-inflammatories available, barbiturates, anti-depressants, anti-psychotics, codeine based, migraine medications, blah blah blah. I even gave up smoking for 2 years. None of that worked and most of them had no effect at all. Oxygen worked the best and Cafergot. The downside of Cafergot is that it is toxic and I can't have more than 10 per 7 days but I get up to 75 clusters per week after week 4 so I put off taking them and suffer horrendously in case the next one is even worse. I'm lucky because mine usually pass in 20-30 minutes but some of the really awful ones last for over an hour and nearly send me totally insane with pain. The muscles in my spine scream in agony for weeks. Shadows pervade for the entire period. Shadows are awful because they almost never stop. It's hard to describe cluster shadows but basically it's like having a 9 week migraine with no break. Light and sound pierces my eyes and brain and I weep openly, trying not to scream in agony for weeks.
I'm beginning to recognise positive changes though. For the first 12 years, no one (and I mean absolutely no one) believed the pain I was in. Everyone had advice and ideas but would not let go of the notion I had migraine, not even doctors and specialists. It took 12 torturous years to get a doctor to finally admit that it was cluster headaches. By then, I was almost drug and alcohol addicted via failed self medicating and as I was to discover, alcohol makes them worse!
I had spent thousands of dollars on medical options and alternative therapy in my desperation to cure myself and nothing worked! I can't even dissociate from it. But, during those first 12 years I had in excess of 7,000 individual cluster headaches (6months of every year). That's about 600 each year. Over the past 18 years since then, I think I've had about 7,000 more (about 388 per year) but notice the extra 6 years in there. Now I get approx. 280 per year (over 9 weeks). So there has been a vast improvement. Also, once upon a time, I could never have got through the first 4 weeks like I do now. Back then I was paralyzed with pain and terror from the first sign of a cluster and now I deep breathe through the first week and sometimes the second week too.
Clusters have taught me to self care, something I never knew how to do once. I'm much gentler with myself than I used to be. They've also taught me mindfulness, patience, acceptance, humility, perseverance, compassion, empathy, reverence, determination, neuroscience, maths, philosophy, faith, hope, love and strength. Today, I don't want to hate clusters as I used to because I am not a victim, I am a survivor. I'm surviving cluster headaches one painful, searing headache at a time and I know now - I am stronger than any pain.
xxjxx
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