While I know I am blessed and most of the time, I feel blessed too, it is really, really hard. My mind keeps jumping to past and future - "30 years I've suffered, I feel scared they will torment me for another 30 years", I don't blame my brain for jumping to that, 30 years IS a long time to survive clusters and a couple of times I almost didn't survive them. I certainly don't feel confident I survived them intact. They had a huge impact on many areas of my life, especially my marriage and my sanity. I can't imagine how hard it was for my kids seeing me so desperate and scared so many times either. My finances were also impacted and I had virtually no social life. I once had no sense of self and no self esteem, clusters became my identity for a lot of the time. Who would I have been without cluster headaches? I'll never know. Clusters dictated and controlled me throughout my teens and early twenties because I had them for 6 months of every year and I was completely powerless in their wake. In my late twenties, when I finally got a name for what was crippling me (clusters), I began to get some power again and I searched, in vain, for relief and a cure. I found neither. There is nothing that stops clusters. They have no known cause, no known cure and very few things provide any relief at all. (Recently, magic mushrooms have been touted as effective but I will not feed that to my brain, it's been through enough),
I have tried many, various medications at the suggestion of doctors and specialist and frankly, I don't think they have any answers either. I've tried many traditional and alternative therapies and ideas. Nothing has worked. Oxygen is helpful but it doesn't work any faster than deep breathing exercises do. The only real relief I've had is from a highly toxic poison mixed with caffeine (Cafergot) but sometimes it's useless too. I think the most frustrating thing for me has been the total lack of empathy and understanding I've encountered from other people. Most people compare their migraines to what I'm experiencing but I've had migraine and I welcome them. I'm sorry but migraine feels like a head cold compared to clusters. Migraine I can handle. Clusters beat me down, torture my whole body, mind and spirit and leave me hopeless and despairing up to 9 times a day! Clusters are the worst pain I can imagine, they often leave me terrified to sleep, despairing, wound-up, irritated, miserable, angry, sad, scared and deflated. I would not wish clusters on anyone, anytime. They are monstrous, insidious, catastrophically painful, awful, horrible, destructive and relentless.
Clusters usually strike within an hour of going to sleep, no matter what the time. They've recently been found to be linked to the hypothalamus and so affect many areas of the brain and nervous system. I've realised recently that although the brain is designed to flood the body with endogenous opioids when pain is inflicted, none are released when I get clusters, I feel the entire thing in the moment and the intensity of that pain is staggering. I've had 2 kids naturally and compared to clusters I did not feel anything during childbirth. Clusters feel like there are lots of people inside one side of my brain trying to escape using ice picks to hack through the top of my head, my neck, eye, jaw, nose, ear, gums, temple and glands. My entire back burns constantly from the increased tension. My eyelid droops and my eye weeps, my nose gets stuffy, I stop breathing, the blood pounds in my head and my temerature spikes suddenly. I get about 5 minutes notice and then BANG.
Over the 5-9 weeks that each attack lasts, they get more intense and painful each day. There are times I've had none all day and then 9 of them, 20 minutes apart during the night. I become irritable and hypersensitive to light and sound and the terror builds as my brain tries to prepare for weeks 5-9, which are always agony. Sleep is something I both dread and crave by then because I'm so exhausted from the pain and lack of sleep. Any type of rest or relaxation brings on a cluster almost immediately as does exertion of any kind.
These days I can get through the first 4 weeks with gentle exercise, breathing techniques, grounding, massage, Cafergot, coffee and painkillers to dull the constant ache that 'shadows' provide. cluster Shadows are not as intense as cluster headaches but shadows don't stop at all and are debilitating in their own way, relentless and wearying.
I was once so terrified of clusters that I set alarms 20 mins apart to make sure I never sat still longer than 20 mins! I was so exhausted all the time. These days I have accepted that I can do little about it but ride them out and keep hoping they will eventually end. I pray they will never come back when they suddenly run their course and just stop each year. Every couple of years they visit twice, which is really hard.
For now, I just feel the anger, fear and pain and try to remind myself to breathe. I will win. I will overcome. I will beat this. Now that I have found hope again, I feel empowered to thrive and no drat-awful, soul destroying, wretched pain is going to stop me.
xxjxx
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