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  1. AJS

    Just Diagnosed with CH

    Hello Clusterbusters! Comforted/distraught to be among you. Here is a brief history of my life with clusters so far, leading up to my diagnosis and including the treatment I am currently undergoing. Perhaps it will provide some succor to other suffers, as many of your stories have for me. I would also appreciate any advice regarding my current and future hopes for coping and treatment. I was recently diagnosed with CH, but have been suffering from attacks for at least four years. (For demographic interest, I'm a 42-year-old white male.) The first CH cycle was the worst, both because the intensity of the pain was 10/10 night after night, and because I had no idea what was happening. I thought I was dying. Then when I didn't die, I wondered how could that be? How could a person experience pain like that and not drop dead? It felt like my right eyeball was being burned out of its socket and that side of my brain was being sliced and pulped by a sadistic prep chef. This criminally insane cook favored a dull, rusty knife when it came to sawing against the trigeminal nerve, a technique that would send searing bolts of pain arcing around my ocular cavity to my face and down my neck, across my shoulder, all the way down my arm to my fingertips. When the cycle started, the attacks came in the early evening, often while I was still at work. As it wore on, they moved into the wee hours. They lasted between 60 and 90 minutes. Some days I'd have one in the early evening and one between 1 am and 3 am. Being woken up this way, night after night, was very frightening. I started to lose my mind. I became desperate, depressed. The cycle lasted about four weeks, lessened in intensity late in the fourth, and then, poof, went away. I attributed it to several factors, a perfect storm in fact: First I thought they were very bad eye strain headaches. I am a magazine editor and that is a common affliction of the trade. Turned out I did need glasses, and badly. Then I thought the attacks were allergy related. It was spring time in NYC, and even though I'd never had allergies before I thought I must have finally gotten them, because the attacks always came paired with sinus congestion and pain, not to mention my right eye turning red, watering, and drooping. Often, a burning, spreading pain in the sinuses would herald an attack. Or a sneeze, even, would have as its echo a sledgehammer blow to the right temple. I was also under a lot of emotional stress at this time, separating from my wife, who had a wonderful talent for telling me in minute detail how exactly I had ruined her life. That alone seems like it should have killed me. My doctor — a man who wore a ponytail and called me "babe" like the 70s never ended (which, for the record, is why I liked seeing him) — didn't know what to make of it. He told me to take extra strength Excedrin and not to let the "assholes of the world" get to me. I took his advice, and it was actually helpful. The Excedrin didn't put a dent in the clusters, but the cycle was ending anyway. I really needed to CHILL OUT. That was when I was 38. I changed a lot of things in my life after that: got glasses, started exercising more, cut back on drinking, left NYC for Austin. Over the next couple of years I had what I would describe as mini cluster cycles. Some of the attacks were severe, but the cycles were briefer, lasting just a week or two. They always came either in the winter or spring. During the worse of these two cycles I went through the same check list of possible culprits: eyes, allergies, emotional distress. I went to the optometrist and updated my prescription (there's nothing wrong with my eyes besides besides hereditary nearsightedness and astigmatism), took antihistamines, and gave myself a break about my girl-probs. The other cycle was so brief I didn't even begin thinking about what could be wrong. In both cases the attacks eventually stopped, but not because of anything I changed in my life. As with the first cycle, they just faded away and went poof. What's worse, I never connected these cycles as being related. I allowed them to fade from memory once they were gone, just happy to be better, never imagining it was something I'd have to go through again. Then January 2018 rolled around and HOLY SHIT, the clusters came back with a vengeance. It must be noted that this was again during a time of great emotional distress, again related to my relationship with a woman, in this case my live-in girlfriend falling into her own downward spiral of suicidal depression and blaming me for it (I know, guys, it's a trend!). From what I've read, emotional stress may or may not be a trigger for clusters. There's no proven causality link, but there is some anecdotal evidence that the one can follow the other. In my case, at least so far, they seem to come paired. This attack has been of a similar severity to the first, but the attacks are a bit different. They last the same duration, 60 to 90 minutes, but the eye is not as effected. It may turn red, but doesn't droop as much, nor does it burn as much, and there isn't much lachrymation. The attacks start either in the sinuses or in the right temple. Pressure grows in these regions quickly into a full-blown attack. It feels like someone is pushing their finger into my temple and wagging it around. I now call it the Wagging Finger of Pain. It moves slowly sometimes, leaving tracers of pain in its wake. It touches points around my ocular cavity. These points burn brightly, white light, and pain radiates out from the little stars. The Finger also plays arpeggios on the trigeminal nerve, sending electric currents of pain racing down the side of my face, neck, shoulder, arm, and fingers. Sometimes it wags quickly, vibrating against one point, turning it to burning, screaming jelly. The pain notwithstanding, the most disturbing aspect of this cycle is my awareness (or hallucination) of movement. It actually feels like something is inside my head, moving around. Or like my brain itself is changing shape, growing tendrils, deforming, becoming something else. I really can't believe that I go back to being a "normal" human adult afterwards. Also during this cycle I've become much more aware of shadows between attacks. In this phase, I describe it as The Eel. It feels like there's an eel coiled in my right ocular cavity with its tail draped down beneath my cheekbone. During the day The Eel shifts. He wags his tail, but slowly, with only minor pains here and there that fade without becoming full attacks. Sometimes The Eel isn't there and instead there are suction cups attached to the right temple that connect by filament to a spot on my right shoulder. When I move my head it seems to tug against this point and the suction cups pull against the temple. I also have sinus trouble throughout the day, with my nose closing up either partially or entirely with bouts of sneezing, which lead me to again blame it all on allergies. After suffering like this for two weeks I saw my doctor (new doctor in Austin, not Dr. Pony Tail in NYC). We'll call him Dr. White Hair. He listened to my troubles and said I was having migraines. He prescribed me sumatriptan, which I opted to take in a nasal spray format (here I was still obsessed with the idea that the attacks were coming from allergies and emanating from the sinuses). It worked. At the onset of an attack, I'd blast the sumatriptan in my right nostril and within 10-15 minutes the attack would abort. It was brilliant, partially. While the drug was very effective at stopping attacks, the cessation was only temporary. In one instance after using sumatriptan to stop an attack, an attack returned later that night with even greater intensity! In short, I burned through almost all six doses of sumatriptan in four days with no break in the cycle, just some relief and plenty of groggy, spacey side effects from the drug. I tried to re-up my prescription, only to be told that my insurance will only cover one six-pack of nasal-delivered sumatriptan per month. Full price was something like $450!! The trouble was I had a conference coming up and couldn't foresee interacting with colleagues and leading a panel while being in the midst of a cluster cycle. I had one sumatriptan left, and was holding onto it like a magical bullet. I carried it with me everywhere I went, while knowing I'd have to save it in case an attack started right before the panel I was to lead. I tried to get into see Dr. White Hair again to see if there was anything else he could prescribe, but he was out sick. In desperation I found another doctor online at one of these franchised walk-in outpatient storefronts that have popped up in recent years. Random as it was, it turned out to be a stroke of luck. The doctor (We'll call him Dr. Razor, because he's sharp) turned out to have something of a headache fetish. His daughter is a chronic migraine sufferer, so he's read the literature on cephalagias. He listened to me talk for five minutes and told me I suffer from Cluster Headache, though he called them Cluster Migraines. The phrase turned on a light inside me and I remembered my first cycle of attacks. In trying to figure out what was happening to me then I had found a description of Cluster Headache online. It seemed to fit the bill, but I didn't think it was what I had, or didn't want to think so: How could little ol' me suffer from the Worst Headache Known to Humankind? Dr. Razor prescribed a dual treatment: prednisone and verapamil. The first, he said, would suppress the attacks and break the cycle, the second would keep another cycle from following the first. He also decided to go full shock-and-awe mode with a heavy dose: 60 mg of prednisone per day for two weeks, tapering to 40 mg per day for another two weeks, and 240 mg per day of verapamil for the next SIX MONTHS! I just finished my first two weeks, and they have been mostly good. The treatment also came paired with another important realization, which is that alcohol was triggering attacks and making them worse. So I stopped drinking (normally I am a daily drinker, at least two beers if not more) and started this regimen of medication. Immediately, the attacks moved from occurring in the early evening to the wee hours of the morning, as was the case with the first cycle: a moving of time until later in the day as the cycle wore on. The attacks also lessened in intensity and duration, tapering down to as little as 15 minutes with the pain only reaching up to 7/10 at worst, but mostly hovering at 5/10. Even these baby clusters are all-consuming, though. When The Wagging Finger of Pain is doing its thing, it has my full attention. I also stopped freaking out so much during attacks and instead focused on trying to keep calm. My method here is to make herbal tea and sit up on the couch with the hot steam wafting over my face. Drinking the hot liquid seems to offer some comfort, and the steam at least somewhat opens the clogged sinuses. It's also relieving to press the hot mug against my face and temple. I also try to meditate. I've been meditating since I was 7 years old (hippie parents) and can reach a meditative state in seconds on a good day. But I'm no Yogi Master. Against a raging CH my mantra is useless, like shooting an M1 Abrams tank with a BB gun. As I write this, I've been in remission for a week, but I'm still feeling shadows throughout the day. Yesterday I tapered off the 60 mg dose of prednisone to the 40 mg. I feel much better. The drugs were making me feel seriously roided out. I couldn't sleep and was angry! Now I'm a little more calm, though still a little jumpy, and hungry. I want to eat all the time! Meanwhile, the verapamil is definitely causing some constipation. My stool is coming out in little globes. Each movement is like emptying a sack of marbles in the toilet. So I feel like a big rabbit when I shit. I'm thinking of taking a fiber supplement for that. Looking ahead into the future, what I want to do is try Busting first. I'd also like to get an oxygen tank, but Dr. Razor says it's tough to get insurance companies to cover it. While I'm grateful for the prednisone and verapamil, I don't want the negative side effects, or to be on pharmaceuticals for such long durations (I still can't believe I have to be on the Verapamil for 6 months.) Last weekend I went out to my dad's place. He had some MM that a friend had given him. This friend is also a CH sufferer who grows his own. He gave us the details on how much to take. We took it and it was a pleasant experience. I hadn't done anything like that since 1996 and dad hadn't dabbled since 1968! I don't know that it had any effect on the CH. Here on clusterbusters they say that the other meds I'm on can negate the benefit of Busting. Whether or not it does, it's hard to say what treatment is doing what when you're on so many! My goal here is to ween myself off the pharmaceuticals and try natural coping and prevention methods going forward. I got a deep tissue massage, which was helpful at least in relieving the tension I was building up in my body during attacks. I was holding a lot of stress in my jaw. I've also started magnesium supplements, which is probably a good thing, whether or not it helps prevent CH. And this weekend I'm going to try Craniosacral Therapy. What the hell, right? I'm interested in hearing what other cluster heads think of this. Has anyone else been put on verapamil for such a long period? It seems excessive to me, especially considering my previous attacks have all gone into remission after a few weeks. Also, I've read a few people mention the d3 regimen. What is this? Thanks for reading!
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