Cluster Headaches - suffering from the beast
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In 2017 I only experienced one attack
In 2018 I experienced 8 attacks, by the 4th one a neurologist was able to diagnose me with episodic cluster bc of the nature of my pain, the effects it has on my me and my recorded list of attacks (all happening between 2-4am, excruciating pain behind my right eye, pain not moving anywhere else and always stays behind my right eye, right nasal discharge, right eye gets inflamed and drips, intolerable pain, Wakes me up from my sleep, I can’t sit still and need to be moving around from the agony, I would never get nauseous from it and light didn’t bother me.
This year my cluster attacks began beginning of August. I already have recorded 25 attacks. It’s been very hard and scary. Sleepless nights. Sometimes 3 (2hr) attacks in a day. Kept going to the ER and was getting oxygen there. Within 5-8min on high flow rate of oxygen, PAIN IS GONE! A second neurologist prescribed me oxygen. I learned all about the oxygen therapy online from Clusterbusters and clusterheadaches.com. Purchased a non-rebreather mask from the site and learned proper breathing methods. I have some theories that i think i get rebound headaches from the oxygen, about aborting an attack via O2 tank i find myself getting 2-3 more attacks spaced out every 2hrs but it may just be either not staying on the O2 long enough after aborting the attack or just regular cluster headaches happening more frequently coincidentally after my O2.
I was also given 6mg subcutaneous sumatriptan injection - this makes me feel awful, chest tightens I feel it in all my veins and my body feels like it’s having a stroke. Doesn’t sit well with me so I stick to oxygen and rarely use the shot.
I’m looking into preventatives but don’t want to take anything that will destroy my body over the years. I’ve heard about Emagality and looking to test it out.
Still learning about this beast. It’s very very very difficult to live with. I’m headed to a cluster headache conference in Dallas in two weeks to meet others like me and listen to some of the leading neurologists in the field of headaches.
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