something i’ve noticed are the days I hit snooze, i tend to have a lot more attacks and pain during my clusters. i know it has to already do with bad sleeping habits but if there’s one that i noticed not only brings my clusters back but makes them even more painful that day when im in cycle is snoozing.. anybody else notice this?
in 2015 I started getting severe headaches on one side of my head where i would be in excruciating pain and could not function. it was completely debilitating. I was in college at the time and had only a few understanding professors -nothing like having a cluster in middle of an exam and your teacher thinks you’re going crazy and not being allowed to leave. In 2017, I had officially been diagnosed and suffering with cluster headaches every single day now. I had kept a diary of over 10 episodes occurring a day at times, for over an hour or more until relief whether it was sumatriptan injections or just my CNS shutting down from all the pain and knocking me out. The problem with Cluster headaches, as most of you know in here, is there is no actual cure or treatment as it’s considered an “orphan disease” ! Only forms of relief but no prevention.
From 2017-2019 I struggled to find hope or a light at the end of the tunnel. I wanted to drop out, knew i couldn’t ever hold a regular 9-5 job (had a banking job where my superior basically said legally he can’t fire me because of my headaches but he would rather I step away from my role) and lost all hope to socialize or do anything… I went to many many specialists and they all could not find a solution after putting me on almost every type of medication that had secondary or tertiary uses for cluster headaches. From nerve block injections to calcium channel blockers to Emgality - a drug meant to help people with migraines but at the time had been approved for clusters.. NOTHING worked to stop them.
THE LIGHT AT THE END OF THE TUNNEL November 2019 to beginning of 2020 was when they started to finally subside with the actions i took from taking matters into my own hands. I tried everything from acupuncture and holistic doctors to completely changing my diet and eliminating certain things. These slowly helped but the catalyst was completely quitting alcohol, MAGNEISUM, fixing my sleep schedule and adding 2 forms of movement every single day; low & high intensity cardio and strength training. I legitimately thought I had found the cure and wanted to devote my whole life to help others beat this horrible condition… untill I realized anytime I would think or read about cluster headaches I would feel the aura and decided my brain is too strong at this point that I cannot even bring any thought or energy to it. From 2021 till now I would just have a slight one every few months or so in the morning and would always just blame them on my sleep schedule (i became very anal about my sleep routine and let nothing come in between it)
i also had HS which was causing these painful cysts on my body mainly on my butt and groin, i remember one time negotiating with the higher being that i would do anything to swap even the headaches for the cysts instead.. oh boy was that a barter because then from 2022 till about spring of this year 2026 I was constantly in pain trying to sit or sleep with them , with 2 hospitalizations from them turning into Sepsis
I bring the cysts up too because now that they have subsided a bit and seem in remission… my CLUSTERS ARE BACK and worse then ever… I have not changed anything in my routine for past 5 years of being cluster free so im sort of feeling hopeless, espicially after doubling my magnesium (800mg) and trying to keep the same sleep routine . They now are almost every 3 hours including at night when they used to just usually be one hour after waking up and like 1-2 more later in the day…
I consider myself a positive person because I’ve made it this far and never let it affect my life or complain (people are always shocked to know what ive been dealing with pain wise whether the cysts or the headaches because ill still be in the gym, do activities etc and let nothing stop me) however this feels like the hopeless end where im
about to break down and just give up.
Curious if anyone had felt like they “cured” or stopped their clusters, just for them to return with vengeance 5+ years later AND whether anyone has dealt with HS or any cysts that randomly subsided once the clusters return? Trying to figure out the correlation as we now know this has to do with the Hypothalmus and pineal gland.