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  1. Like
    Purple got a reaction from CHfather in Solstice greetings and CH thoughts   
    Hello everyone, I didn't post here in a while, didn't visit the site nor board either, sorry, but I do think about my fellow clusterheads pretty much every day, I hope you are well and are able to remain pain free.
    It's almost three years now I didn't get to go through an attack, a real one, I was able to manage a few back into the box before they grew into an actual CH, but I do have to deal with CH pretty much every day. I guess I found a way to manage them. Just now on my way back from the store, I had to stop walking, put my bags down and... I dunno exactly what I do, but I seem to be able to push them aside as they are rising. I was very scared this time though, especially we are solstice day. I've been feeling this solstice coming for a while. This morning at 6:05 am, my dog was up and turning around, it woke me up. I said to her: Hey I took you out last night so I could sleep in, so go back to sleep. Later when I got up I realized it was exactly solstice at that moment. I guess she was feeling it too.
    I really feel I'm connected to the elements, like a plant. It's no point trying to fight it, better roll with the wave.
    The past 5 years have been rich in discoveries and knowledge gaining for me. As some of you may remember, I'm transsexual, male to female. I started to transition, taking estrogen and testosterone blockers, almost 3 years ago, actually right after my last cluster episode, the worst I went through and that literally killed me, well the one I was before anyways. I reported here that the theory saying clusterheads lack testosterone is verified as wrong in my case: my testosterone count has been at the lowest it can be, less than most cis women have, for more than a year now. 
    I also reported here that progesterone could be a cure for CH and I was totally wrong on that case, although it could maybe help; I'm certain CH is linked to hormones, but not one single hormone... it's a matter of balance.
    Also no doubt that stress is a major factor in CH developing into an attack. Quit your job, retire, that's the best measure to keep CH away. Yeah, well, I know it's not possible for many, but please don't blame me to have grabbed the opportunity that was offered to me to be poor but be released from any stress of having anything to do. That was the major game changer in my life. My last episode of CH was so terrible... I think if I get another episode, it would be even worse for I never had before to deal so much with possible CH every day. It used to be that, between episodes, I would be much more free from the beast... I wouldn't dare drinking alcohol, I didn't for the past 2 years. So for me it's clear: if I go back to the work world, I will get CH back. I don't believe the situation would be better if I had not transitioned, if I had testosterone still, though I have no way to know for sure. The fact is I didn't get an episode since I switched my main hormone to estrogen. Also, if I look back, the trend has been an increase in CH in the past 15 years prior to my last episode, so I think my transition was more positive than negative, regarding CH.
    My quest has been, since 2012 that I joined this site, to find out what CH is, more than how to cure it, or sooth the pain. I shared before my thinking that CH is to be linked with autism, I still think that is a good track to follow. But having started an hormonotherapy to change my main hormone to estrogen, from testosterone, I did try to understand how these work the best I could. I studied how the sexual hormones are released, and it led me to the hypothalamus, and furthe upstream, I got to GNrH, which is released following a certain rythm, at a certain pace, and that pace isn't the same for women and for men. My best guess is that I always was a woman, that my GNrH is released at the pace of a female, since I am one, which was totally incompatible with the big flow of testosterone I received between age 15-18, and this big amount of testosterone culminated into my first CH at age 18. Now didn't many of us got their first CH at around that age? Yes. Guess why? Too much testosterone: unbalance, and incompatible with the pace of release of the GNrH. So that would make CH linked with also transsexualism. Yes, why not? Transsexualism is not a choice of life, it's real, it exists, I was transsexual at birth, following unusual flow of hormones at crucial weeks of my development in the womb. I think that this unusual distribution of hormones at crucial weeks in the womb result in things like transsexualism, autism and maybe many other issues. Also the fact that my parents were both older when I was conceived, my dad 44 and my mom 37, and uh... yeah, there is a higher risk of autism (older father), of trisomy 21 (older mother), and according to me transsexualism, and also trisomy of other chromosomes, including the 23rd, the sexual ones.
    There is a very high percentage of transsexuals who are in the autistic spectrum, like 30%. It's my case and is also that of the two other members of my close family who are clusterheads: they are in the autistic spectrum according to me but they would probably contest this. Autism is very largely under-diagnosed and has been forever. I think some 20% of the human population is in the spectrum, not 1 to 2% as they say, and I also think it's been the case forever, it's nothing new and I think (as most experts) we have not experienced any increase in autism cases, we simply know how to identify autism better.
    The hypothalamus is the part of the brain that tells the glands to release or stop releasing hormones. The problem with CH could be the hypothalamus, but what goes wrong with it is that it doesn't send the right messages, then an unbalance in hormones is created. So maybe the prob is the hypothalamus, but maybe it's upstream, before the hypothalamus.
    The pre-hormone GNrH comes before the hypothalamus in the process, in my understanding of it anyways, so maybe the problem is there. Personnaly, I really feel that when I'm trying to, and suceeding at, controlling a rising CH, I'm actually realigning myself with the GNrH release pace, or re-synchronizing it. I don't know how to describe how I do, I stop everything, cut myself from the world and focus on myself and relax, and... when I found that GNrH is released with a pace, at a certain tempo, it was clear for me that this is what I do: re-synchronizing my pre-hormones release... I don't know. Maybe. I think this would all be worth searching, but I stopped searching myself. I'm satisfied with my findings. Also, when I forget a dose of Estrogel, I can feel my head going towards an unbalance. I don't have testosterone anymore so if my estrogen count goes low on any given day, I open a door, then too much sun, not enough eating, a too hot shower or bath, or alcohol, anything can trigger a CH since the door is open because of the unbalance in hormones I created. Or too much stress, simply, Or social stress. Autism is linked with social issues, so is CH. Feeling a CH rising, I must cut all social contacts rapidly. Rapidly, because it quickly feeds the rising CH. And I'm certain that non-verbal autistic individuals (those at the center of the autism spectrum) suffer from CH when they are in a crisis, they act the same as a CH sufferer. Same headbanging, rocking, same everything, socially as well.
    My new roommate came in with a good link to some very good acid, he gave me a few hits but I really fear taking it. I fear it will trigger a crisis, like it did last time, three years ago with MM. I feel I'm better off just surfing on avoiding anything that could trigger...
    I'd like to resume my studies of my brain, body, hormones and all that, but I have other things to do, writing novels. I inserted CH and the clusterbusters theory in my 2nd novel. I try to just enjoy things, I walk my dog, I talk to sparrows, ravens and squirrels, I enjoy the sun and get my skin darker.
    Summer solstice 2018
    P.S. I'm posting this here in general to make it available to everyone, like maybe a random google search from someone searching the same issues I link to CH, if it's not right to post this here, I'm sure someone will move it to its right place
    au revoir :-)
  2. Like
    Purple got a reaction from spiny in Stress, emotions and CH   
    will post this as a new thread, but it's following a small exchange on the subject there was on my thread on share your busting...
    Before I go on, as said in that thread, feeding you with my (flourishing but) chaotic thinking, I'd like to make a point on stress.
    I always knew my clusters came when stress relieved, after 45 minutes of sleep for example, but I also remember many times driving back from work with strong shadows, exploding in a sudden kip5-6 as soon as I park the car in my alley.
    Certainly stress is not the cause of CH per say. My thinking on CH recently (that I should post here in the next future) wasn't about stress, but when I met my brother last Holidays, and he again told me considered himself not a clusterhead anymore, I think it's 4-5 years he is painfree, and later discussing this with my mother by email, I linked this to my last cycle, last sept.-oct.
    It suddenly came to me that for my brother, CH had started when real big stress came in his life, and it vanished when he retired, which came about same time that the three youngsters left the house for good.
    Then I remembered how much stress I went through last spring and summer, when I couldn't find an apt that suited my (very small) budget and the fact that I have a german shepperd. It went as far as considering living in the street or putting my old dog to sleep  . I searched from March until 2 weeks before my lease ended end of June, then had to search again for it was temporary.
    I mean big stress, not just like, ohhh this upcoming dinner stresses me out...
    Like the big stress my brother suddenly had at age... what, 36? when he found himself father of three with more or less a job (well successfull cab driver, but still, stress of driving, long crazy hours...)
    My cycle came after two moves within 6 weeks and finally a cool place to live. Big stress release, bang, here comes Charlie.
    And as for emotions, well actually, I don't feel that many emotions so it's hard to tell haha (details later) but for sure crying is a trigger for me, whatever the reason for crying. But emotions are often related or follow a period of stress, or bring it, so...
    So stress.
    Apart from this terrible cycle I had last fall which as I explain came after a big stress relief, I feel that I can generally speaking compose more easily with the threat of CH, the every day shadows (I do have shadows all the time between cycles) since I don't work anymore and don't give much of a damn anymore about anything, politics, every day events, whatever. I don't get involved anymore. Well I cut all sources of stress.
    (for me) It's as much related to CH than cardiovascular issues are, if not more. Stress, that is.
    So I think if stress is not in the causes section of CH, it certainly is in the category of: things to be avoided if you're a clusterhead, and I think that should be one of the first response from the medical services: take a break! (paid of course)
    well I guess that's not possible for everyone.
    I adjusted my needs to a very low level of income, and F. the rest. 
    Do we necessarily have to be productive in this world?
    I feel I'm quite productive in thinking, that should be enough
    no more stress plz
  3. Like
    Purple reacted to diamondmaker in Smoking and CH   
    There may be different kinds of addictive behavior... but what I believe is happening with me is... there seems to be a deeper motivation, a level of consciousness I don't necessarily see, that is desperately trying to self medicate at the root of the CH. That level is very aware of the effect CH is having on me, even when not under attack. It is an animal, instinctual level, not easily defined or controlled. And, I believe we are permanently altered by our CH 24/7.
    Still need to finish that "Pain... the tip of the iceberg" paper I am writing... so many points.
  4. Like
    Purple got a reaction from MoxieGirl in My literary contribution   
    this is great MoxieGirl !
    I like this verse particularly, maybe worst than the pain: And the terror within, all but fades
  5. Like
    Purple reacted to MoxieGirl in My literary contribution   
    I had posted this back in April and it didn't get a lot of comment. Not that I'm craving your adoration or anything like that. But am curious what people think. Should I not give up my day job?
    Longing to Escape..
    Today is like any other
    Yesterday, today & tomorrow, all blur together
    Day in and day out, everyday the same
    I wish I could escape this game.
    The Beast visits most when least expected
    My face drains of colour, and I feel quite infected
    Into one eyeball, always just the one, the Demon comes
    Blinding and piercing like I’ve been poked hard, with a thumb
    My eye seems to freeze as if turned to ice
    And the pressure builds as if placed in a vice
    My nose starts to run and my eye begins to tear
    As my body is gripped with fear
    Red hot nails, they pierce and twist in my eye
    The burning is such that I wish to die
    Knives cut and rip through my skull
    As I pace the room and bang my head on the wall
    I can feel my cranium crack
    As all my world turns to black
    For one hour or maybe two
    How long it really lasts, I dare not tell you
    For all that time, I pace and I walk
    Sat on my bed, back and forth I rock
    I suck on oxygen and drink caffeine
    I can be quite snappy and downright mean
    But eventually the nails are removed, as are the blades
    And the terror within, all but fades
    I am drained, I am spent
    My energy is at zero percent
    I need water, I need food
    But instead, I lay here unable to move
    I take one deep breath, and maybe two
    Before the next sensations ensue
    This is when the true crying begins
    As my body shakes from my bones to my skin
    I am racked with hot convulsions in wave upon wave
    To this terror I am now but a slave
    Eventually, even this fades to a whimper
    As my body begins to shiver
    Wrapped in a blanket I raise myself up
    Finally sloshing some water into a cup
    Today was like any other
    Yesterday, today & tomorrow, they all blur together
    Day in and day out, everyday the same
    Oh, how I wish I could escape this pain.
  6. Like
    Purple reacted to CHfather in I have a chance to be in a clinical trial, but...   
    Just to add my voice to what has been said.  Everyone with CH is a hero in my book, but those who volunteer for trials, knowing they might get the placebo, are all caps HEROES.