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Onglamesh

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  1. Onglamesh

    The return of the Beast

    Hello Cluster Busters! I think the last time I posted here may have been in March of this year... last public complaint of an attack was a little over a year ago (May or June of 2017 if I remember right). I was beginning to think I might skip the cycles this year, but no such luck. Beast is back and magic bullets are in short supply, so here I sit debating whether I should medicate or just curl up in a ball (as the Beast seems to know when I have no escape, and reserves the strongest onslaughts for those times). The Beast is Murphy Anyway, life goes on. Attacks are certainly happening this week (this is NOT a drill people!), still mild at this point though... but it's been so long, I've finally blocked out the memories of the sensations and I feel unprepared for the levels of pain that are to come. This particular attack seems to have passed its peak now, maybe a 3/10 (we'll know for sure when my new 10 is established at the climax of this cycle hehe). Got through it without assistance, I guess it can be therapeutic to know that I am still capable of taking a cluster headache "like a man." This attack was weak sauce though, I think just about anybody could brave that, but I know what it implies for me in the near future. I've had a girlfriend for about 2 months now, my first time opening up to love in 8 years (for personal reasons not related to CH). She's generally supportive of my situation, but there are times when I get the feeling she doesn't believe how much it hurts or my personal reasons for coping the way I do. She has COPD, so when she told me she thinks I make these headaches happen by thinking about it and worrying that it's gonna happen, I told her that's akin to saying she can't breathe just because she THINKS she can't breathe. I mean if I could turn it on with a thought, I'd be just as eager to turn it back off in the same way! But 10 years of unmedicated agony taught me that there's not a thing my mind can do to stop that pain from happening, any more than a mind can regrow an amputated limb. Sure, I can meditate and focus on calm deep breathing, that can help relax my mind and body to tolerate the pain a little bit better, but I'd be a spiritual guru if I could tell you how to breathe the Beast into submission. The cycle has only just begun, I fear she won't understand when the frequency and intensity of hits inevitably graduates to the hopeless despair we all know too well. I mean I'm accustomed to keeping that drivel to myself anyway, but it's disappointing that the person I should trust the most will likely never understand, I fear it may scare her away and then I'll be in pain AND lose a person I love. Mostly I fear my lack of patience and tolerance for stress in this state... I've not always been the nicest person mid-cycle. I hope I can maintain a healthy attitude this time, I think I put myself in danger by reacting to this condition so strongly in a world that doesn't understand it. Does anybody else here have insight about managing personal relationships while being an insufferable, irritable, angry clusterhead?
  2. Onglamesh

    Overdue for a bout?

    Remission periods are so wonderful... mostly. When I become convinced the bout is complete, I rejoice warily. I haven't fully got a handle on the timing of this cyclical hell after about 10 years, and when it goes away I can never fully trust the pain-free state. The Beast is unclear in his logic but one thing is made crystal clear as he departs for his long-awaited vacation: "My work is not done, I will return sooner than you expect." It's as though I'm in denial, I have this painful headache that has promised to return, but when it has been gone for several months (or even just a few weeks), every shadow feels like "Yep, this is the one that will surely usher me back into the familiar realm of pain." Then the shadow passes after 10-20 seconds, usually just blood pressure equalizing in my head (I used to enjoy the dissociation of a "head rush," but now it mimics CH and frightens me). In this way, the Beast has a hold on me every day, as each minuscule fluctuation in my temporal vessels reminds me of the great power this condition has over me even while it's dormant. Still no full attack since my last post (I believe it was the 11th of either May or June '17), but transient shadows nearly every day. The shadows often seem to happen at mildly stressful moments, and I wonder sometimes if they're even happening, maybe I just briefly imagine the pain as a developed response to stress, as my mind has come to equate the pain with stress... I've dealt with bipolar disorder since childhood, and had plenty of social issues to accommodate in a world full of people with better emotional balance than me . I tend to be extremely irritable during clusters, very short tempered and impatient with people, prone to overreacting to the smallest hang-ups that would make few people bat an eyelash. I'm now beginning to wonder if that's triggered by the CH-induced anxiety (as I always assumed), or if the CH might actually be a manifestation of my stress. Like my brain gets so caught up in loops of cognitive dissonance that it starts to blow at the seams! So here I am, overdue for a cycle. I seem to have had attacks every winter and every summer since late teens, but didn't begin documenting anything until last year. I downloaded that RegistrateYourJourney app, my cycle ended two hits later, so I don't have much of a journal yet. And now I sit here with that wonderfully deceptive feeling that maybe it's been spontaneously cured, I mean it's been so long that I can hardly remember how intense the pain can be, all I remember is that it really really hurts lol... So I'm in what I now call the Denial Phase, that tasty point of the cycle where I tell myself that this time it really is over, not just a remission but it's actually not coming back this time. Let me take comfort in my delusions haha Anybody else ever feel this way? I think maybe I'll be able to better predict the onset of an impending cycle after 2-3 years of documenting, but for now I'd like to pretend that this whole cluster headache thing was just a bad dream from which I awoke in a cold sweat. I mean I really WOULD like to feel that way if I could choose, and I feel like I'm trying to convince myself of this blatant lie and getting better at believing it every pain-free day that passes, but I know the Beast will eventually be vindicated when he makes his grand entrance. I guess I feel a sort of guilt, maybe something like survivor's guilt, as though I don't deserve remission and shouldn't be allowed to exist without the pain. I get the feeling that this disease is some sort of penance for all my transgressions against other beings, and then during remissions I begin to feel like maybe I'm a better person now and I won't be needing that Beast to punish me anymore. I've had some relatively stable emotional balance lately and I wonder if that could be a direct link to my lack of headaches at a time of year when they normally occur. I have a tiny feeling that the DMT corrected something in my head during the last cycle and now it's over, but that's highly unlikely, as most Busters report needing treatment to abort subsequent cycles and DMT only aborts individual hits (for me at least). This year I'll be getting some mushrooms and dosing according to the recommendations if/when the cycle begins, perhaps I won't need to abort any individual attacks if the whole bout can be stopped instead. Actually now that I think about it, I did have some recreational MM in July, maybe that had something to do with my prolonged remission (duh moment). I still don't understand how much psilocybin helps me, but maybe this time it did help without my intent. I've never taken mushrooms with the intent of treating CH, they're typically unavailable during bouts, but maybe that dose worked enough magic on my brain to ward off the next cycle, months before it was to begin? I'm torn between this chemical explanation and the mood-triggered explanation, and of course it could be a million other factors I'm not thinking about. Probably not a simple explanation anywhere, but I feel like this is some puzzle put here to be solved, ya know? Gotta throw my chips in... Do we have any other people here who suffered from depression before CH set in? I can see firsthand how CH could trigger depression, but what about those who already struggled with mental problems before a physical pain became known? Sometimes I think this CH might just be a more extreme symptom of my insanity, but it's comforting to see that you Busters seem to present yourselves as reasonable people. What's going on under the hood? Do you think CH triggers your stress, or the other way around, or both? And has anybody else had experience with accidentally busting a cycle several months before it's meant to begin?
  3. Onglamesh

    End-of-Cycle Anxiety

    Or it's almost as if my body CRAVES pain! Maybe the clusters just fill in that role when other sources of pain are not present, so the trigeminal nerve is like "Hey, I can give you some pain, since you appear to be lacking! Do you feel alive yet?" I mean my mind certainly doesn't want the pain, but it's like my body insists there must always be some available, just in case... lol
  4. Onglamesh

    End-of-Cycle Anxiety

    Thank you all for your replies! It's very comforting to know I'm not the only one who gets crazy over this, haha Very happy to report no attacks for a week! Last Friday afternoon was the last time I had to medicate (seldom in the weeks before that), and it was just one of those long-lasting mild ones that I didn't want to think about anymore. Since then I've only had tiny shadows here and there, and I suspect those aren't cluster at all, probably just sinus pressure from the flu I've been enduring this week. Anybody ever notice some kind of merciful synchronicity between the headaches and other kinds of pain? For example: I had my wisdom tooth removed November 2015, had been in a cycle until the rotten tooth started to hurt nearly as bad as the Beast does. Around that time, the headaches went away and I was left to focus instead on my tooth pain. Got it removed (long process requiring multiple operations over several months), and during the tooth pain I remember there was no head pain but a constant fear that it might return, and feeling grateful that I only had one severe pain at that time. And here I am again, just past the end of a cycle (so it seems), and I get the onslaught of flu symptoms. I also have recurring pain in the muscles above my knees, but it also seems to back off and make way for the Beast when told to do so Probably just coincidence, but I wonder if it means anything... I'm sure there must be plenty of folks who simultaneously suffer from CH plus another kind of strong pain, right?
  5. Onglamesh

    End-of-Cycle Anxiety

    So my pattern of pain has been strange lately... I get 1 or 2 days of nothing, then a day and/or night of rapid-fire cluster attacks (every hour, on the hour, thanking a God of which I'm not certain for DMT). Pesky Beast wakes me up at least 4 times a night, rendering all my sleep unproductive and leading to a day of yawning and shadows (if not more full-blown attacks). Then it repeats itself, and I get a break again for a few days. I seem to remember my previous cycles going this way toward the end. This is the only cycle during which I've had a good abortive drug, so it has occurred to me that it's the first time I haven't contemplated suicide. Normally I end up getting my remission just before I'm ready to give up, and thankfully this time I've been quite okay with my hand of cards. Now ending it doesn't seem like an option at all, as all I need to think about during an attack is "where's my medicine and how can I safely use it ASAP?" But now I am still anxious as my attacks become more frequent and severe (during the bad days). It's currently been 3 days since any attacks, and I am stuck in the demilitarized zone between "don't leave home without the fractal dust," and "rejoice and feel like a normal person for a few months." Maybe Schrodinger should put me in a box, then HE could try to calculate the likelihood of the Beast returning. By his logic, I would simultaneously be in cycle AND out of cycle, which is pretty much how I feel right about meow ... I just want it to be over, I'm always so hopeful at this point, but then another attack begins and I doubt my ability to sense my own body a little bit more. So as the years go on and the cycles continue, I wonder if I will ever get over this sense of impatience, or maybe become aware enough of my senses that I will know for sure when the cycle is complete (rather than wishful thinking). Unfortunately, even in between cycles, I still fear the return of the pain and can't seem to go a day without thinking about it. I even tell myself, "it hasn't hurt for months and still you're obsessing over it, just begging the pain to come back with the power of suggestion." I suppose this may be some form of the CH-related PTSD I've read about... I need to find a way to wrap my mind around the inner workings of my head, as my head probably won't change to suit my mind any time soon. Anybody else familiar with this end-of-cycle anxiety?
  6. Onglamesh

    Ear popping shortly before an attack stops ?

    I actually became much more aware of this phenomenon in the past year, not sure if it's new to me or if I just didn't notice it before. When I discovered the rapid relief of DMT, I also discovered that my ears pop almost every time I do my thing and the pressure subsides. The stronger the attack, the bigger the pop. Just as though I have been driving down a mountain, my right ear pops (left too, but much more on the pain side) and the pain is gone. Because of this observation, I've become a bit more adept at knowing the difference between a real attack and a false alarm. You see, I have my medicine and I love how well it works for me, but it's very precious and very illegal, so I only use it when I know FOR SURE the Beast is back. Sometimes I get the swollen/hardened throbbing artery and spend hours fearfully anticipating the pain, which sometimes doesn't even happen. So annoying. Now I have been using this ear pressure as an indicator, I know it's serious if my right ear and nostril feel swollen.
  7. Onglamesh

    14 years in the making

    Indeed, I thank you and your entire team from the bottom of my heart. The very study you've mentioned, released in 2006, was the same study I found on Erowid.org in 2007, which is what opened my eyes to the nature of the brutal headaches I had been experiencing. Before that, I thought I must have a tumor or aneurysm and it's just a matter of time before it paralyzes me. It was then another 9 years before I discovered/accessed a similar alternative treatment that helps me immensely, and all the logical steps that led me to it began here! In the 10 years since then, much more research has been done on CH, and my medicine of choice (DMT) has become a hot research topic both for its psychoactive effects AND its medicinal effects (yet another Schedule I with great medicinal qualities that may finally be acknowledged). I have high hopes for both subjects, and higher hopes that they will be better understood in the future and contribute useful data to each other. I firmly believe you have saved lives by putting this organization together. Again, I thank you for everything that's being done here!
  8. Onglamesh

    Looking for testers

    This is nice... I can log foods, drinks, and similar things that could be triggers or helpers. This might help me get a better grasp on what helps and what hinders. One request: could you add DMT to the list of alternative medicines? I'm using Other in the meantime... But that's great that things like caffeine, paracetamol, etc are all there. Now I get to study at a graph of what I've done and how it may have affected my condition, this is awesome! Thank you so much for making this!
  9. Onglamesh

    Looking for testers

    This sounds like a wonderful idea! I looked it up on the Play Store and saw it's available and free, I'm gonna set it up right now, thank you for making this possible!
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