Avoiding pain isn’t simple but I’ve often talked about deterring the pain that comes about with migraines and vasculitis flares. You haven’t however heard how I deal with the worst of my paint spikes the now chronic cluster headaches. How in the hell does someone deal with the worst pain known to man at the moment? The answer is you fight it with all your might, it might sound cliché but it is too true. There are many many night I have a pen knife in hand considering doing the unthinkable banging my head against a wall waiting for the beast to stop.
What you have to remember even though it’s hard to think clearly at those times is I am strong and I have a lot to live for. Sure I am in pain a lot but I have my family, a loving fiance, a puppy who needs me, two sets of living grandparents fortunately they’ve all escaped death more than once which I am truly grateful for. So when you get a cluster think not about the moment but your life. If you didn’t have these horrific headaches could you enjoy life at least a little bit more. If your answer to that is yes then target your reasons to survive and think of them immediately as you strap on the good ol’ oxygen non re-breather mask to help you get through it! That’s the point though just to get through the battle you don’t have to be a hero and pretend you’re just fine remember this is the most painful condition we know of it;s ok to shed some tears and make some noise in pain and anger.
What I like to say to myself is if I can battle this I can battle anything. I can change funding for my conditions, I can start a business whilst terminally ill, I can get remission someday from my deadly vasculitis, and I am still capable of showing compassion to my fiance and family despite my condition. Just think of how many people would be miserable without you, not only at home but in your support groups and all over the internet. Also think about a way out of pain more immediately, in other words how could you escape the beast this very second?
My first suggestion if you’ve read up on or been taught some techniques is biofeedback which works for a lot of people, I’m leery of psychologists and the breathing techniques have helped me immensely with my vomiting and over time have become a rhythmic/automatic routine for me when the pain ramps up., Another great little tip is to break out the arsenal of hot or cold packs to pay around the shoulders, neck, head, and eyes. I prefer a cooling sensation myself but everyone is different so I try to keep a few around that can be warmed up in case I have company or friends with chronic illness over that prefers this option. I try to think of not only myself but those who will be visiting as I don’t want my home to set anyone with an illness off into a flare or trigger
Other than that there’s music which is proven to be soothing to those with chronic illness and in some cases allow miraculous things to occur within one’s brain. I highly suggest reading Oliver Sacks if you’re interested on this topic because much of his work revolves around musical stimuli in the chronically ill often involving neurologically compromised patients. Listening to the cello, violin, and classical music are some of my favorites during a bad cluster when I’m not too sensitive to sound. If I am I put my iphones speaker on low and play it since my O2 pump in the room makes enough noise to dull out the sound enough so that it won’t bother me.
I suppose my last suggestion would be to make sure you cover your eyes with the ice pack I mentioned earlier, a cheap pair of sunglasses, or preferably Axon Optics FL-41 tinted wrap around lenses for complete protection including from peripheral light! I prefer these in the transition or outdoor tint for sure!.The prices may seem expensive but with the amount of trips to the ER it has saved me I’ll be wearing these things for life. Remember some medical costs may seem outrageous and yeah $169+ seems like a lot for glasses but remember you’re having them made by a company run by neuropthamologists who know exactly what they’re doing and will throw away any defective coatings instead of shipping them out which would be bad customer service. For a company of only 5 or 6 people Axon Optics truly does a great job and I’d recommend them to any cluster headache survivor! Don’t forget that they have options now to try their new patented contacts which are in beta testing and their prescription tinted glasses as well! Both are fantastic options and will allow you to live a much more normal life meaning less photosensitivity and more fun in the sun for you!
I hope some of you have found this article to be helpful and that you take some of my advice from this article in helping you battle those mean beastly cluster headaches. I know sometimes they’re just too much to carry out many of these steps but at least have a caregiver or friend bring you ice packs if you can that will be a tremendous relief. As would the glasses but again that’s if you can afford them, I wish all insurance companies covered them but most don’t unfortunately, though you can always ask I know some certainly do cover these glasses. Why” It’s cost effective fewer trips to the ER means less bills they need to help you cover benefitting both of you in this case. I hope more companies pick up on that lesson soon. Anyways I hope you have very few and hopefully NO cluster headaches this week, and that you enjoy some pain-free days ladies and gentlemen. Thank you for reading and enjoy your day!