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  1. No 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 Beast 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. Sharp blades 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 pain 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 symptoms ensue. Then the crying truly 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, 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.
    13 points
  2. After his courageous 2 year battle, Clusterbusters is overjoyed to share that Bob Wold has beat cancer.
    11 points
  3. Thought I'd watched them all but somehow I missed this clusterbusters YouTube video.....until just a few minutes ago!! I've had the pleasure of meeting and getting to know almost everyone featured several times over the past 13 years! Be forewarned, grab a hanky or some tissues before watching as this video may result in eye leakage...
    11 points
  4. You see those nice Medical O2 tanks on my deck? THEY WERE FREE!!!!! Yes. I saw my Neuro last week and requested a script for O2. He gladly obliged and WE filled out a form. Our local O2 carrier is Lincare. The form has a bunch of questions unrelated to Clusters, so we left those blank. There were a lot of blanks! It stated ' minimum of 15LPM with a non-rebreather mask for 15 minutes, as needed for Cluster Headache'. My delivery came in 24 hours!! They will bring however much I require every week. 'How long does one tank last for you? How many next week?' So, should you need it and you are on Medicare, you can now receive it!! I am in heaven. Also in cycle, but this project makes it SOOOO worth the pain. I am delighted to have this cycle and uncover this stupid mystery we have been wondering about. Thanks to all of those who were able to attend 'Headache on the Hill'!!! WE WON!! Ok, time for a massive HAPPY DANCE. Yes, I will Pin this!
    11 points
  5. I put the official stamp of Jeebs "Like" on the Clusterheads Poem, but I do think these last two lines from it are worth qualifying: Unless you are a clusterhead You haven't got a clue I've long considered @CHfather to be an official clusterhead whether he wants to or not. This guy has consistently come to the rescue of tremendous numbers of fellow clusterheads on the forum over the decade, and while many may not realize it, all while going through the ultra severe pain/afflictions/hospitalizations wringer and them some himself - he's one individual whose severe health experiences I would actually not wish to trade for my own. Then with his own child a clusterhead, he's "got a clue" and then some. So here's a New Year's toast of infinite gratitude to one Clusterhead with a capital C who has made such a huge difference for so many of us, an individual who I shudder to think what Cluster Busters would have ever been like without, the hyper vigilant, ultra knowledgeable, incredibly empathetic dude who keeps the cluster info real, and who I find myself now building up into some kind of God-like figure, or at least a patron saint of headbangers, Chfather.
    11 points
  6. LP3, only those of us in this hell can understand your rage and feelings of hopelessness. But DO NOT give in to those feelings. You did well to vent to your brothers and sisters on here. We all get it. I dosed this morning at 4 am and then stood in the kitchen about an hour ago and wept as a KIP 8/9 hit me again. I was devastated. I could hear laughter and happiness in the next room as family celebrated-just as it should be. . The beast had once again reared its ugly head on one of the holiest times of the year for our family. I hate being made the center of attention when the beast interrupts everyone’s life - not just mine. No one complains because they understand-as much as they can anyway AND because they love me After the entire family prayed for me I was humiliated by once again being the center of attention. I was grateful for the love but once again I had been crushed by the beast. However, I somehow found the strength to get back into the fight So I open the forums and your post is the first one I see. Surprisingly I wasn’t discouraged by it but my first thought was LP3 needs us. Of course, so many had responded that very day to you with kindness and understanding that only a fellow cluster head can have. it dawned on me that is what keeps us all going in those dark moments: the fact that we’re not alone, that someone somewhere needs to hear that someone else understands, and that there is no way in hell we will let each other down. thank you for your post and I hope you had a wonderful holiday weekend-despite the beast.
    10 points
  7. Congratulations, Bob Wold! There was never a more deserving recipient of the National Headache Foundation Advocate award.
    10 points
  8. I know how easy it is to be so mad at this condition and the number it does to us. I find that for me, practicing being as kind and compassionate to myself and then to my loved ones really does help. Staying as calm and peaceful as I can (both while having an attack and during pain free time) helps to lessen pain and attacks overall. I know it is SO MUCH easier said than done. But just try and practice compassion in every way you can, starting toward yourself and it helps. Sometimes what I do to facilitate this is I imagine myself as a 16 year old kid getting these attacks for the first time. I think about how scared he was and how alone he felt and how much pain he was in. I feel so, so sad for him and just want to hug him and tell him everything will be ok and comfort him the best I can. Then I take all of those feelings I’m experiencing toward the young version of me and extend them toward present day version of me. Compassion and care and empathy toward myself. For me it helps to calm me down and lessen overall pain and suffering.
    9 points
  9. I saw a comment by Flash on his Facebook homepage this morning about a new, soon to be published book about us by Dr Joanna Kempner!! How a group of regular citizens debilitated by excruciating pain developed their own medicine from home-grown psilocybin mushrooms—producing near-clinical grade protocols, and their fight for recognition in a broken medical system Joanna Kempner is the premier expert on the social impact of headache diseases. In Psychedelic Outlaws, she follows a group of people called “Clusterbusters,” a community bound by their experience with cluster headache—a neurological disease so excruciating, its pain is often likened to being shot in the head, repeatedly, multiple times per day. Obtaining a diagnosis can take years and treatments often leave patients worse off than they were before. There's a grim reality behind the disease's nickname, suicide headache. Kempner’s narrative traces this patient movement to its origins to the extraordinary experiments conducted by a man named “Flash” in Aberdeen, Scotland, and then follows it forward, as the idea of using psychedelics for pain begins to gather in the early days of the internet, and then eventually became a full-fledged effort to bring this knowledge to universities. Their story looks at the politics of pain, why some drugs make it to market when others don’t, and our culture’s complicated history with psychedelics.
    9 points
  10. ... yeah.... he's wrong! .... crap like that is what makes FB such a dangerous minefield for clusterheads... mixed in with that absolutely essential care, compassion and vital info is stuff like this that does a disservice.... especially to the folks new to CH and those w/o the time, desire, ability, means or motivation to go in depth. i mean no disparagement to the many good folk on the many sites... and i'm there too.... but the info is just so scattershot and unreliable it's scary.... with much difficulty checking the bona fides of the poster or researching a topic.... ... the pioneers of busting figured a better way.... the info is right here.... and the Yales and Harvards of the world are finally getting on board.... .... if the anecdotal reports from thousands of clusterheads on the dangers and consequences of overuse (even "proper" use) of triptans isn't enough.... it's right in the medical literature and on the dang label/insert of the script!
    9 points
  11. LP3 Yes the reality is it is relentless and without mercy Yes 15 attacks a day is unbearable Yes I question ‘why me?’ Yes there is no future, only today and tomorrow Yes the medicines are no cure and take a huge toll on my health Yes I can not enjoy simple things anymore like movies or concerts Yes there is only little that I can eat or drink without triggering Yes the nights are long not knowing when it is going to stop Yes tomorrow it will start all over again Yes I am fucked Yes I do not feel fucked Yes I refuse to give up Yes I need to be stronger than this Yes I can not tell my parents up in heaven, ‘sorry I gave up’ Yes I lead by example for my children Yes I do accept the help of my friends for the things I can’t do anymore Yes the glass is half-full, not half empty Yes I can still see the beauty is small things Yes there is a place (here!) where we really understand Yes I take comfort that I am not alone I found my peace with it I hope you can find yours Alex
    9 points
  12. You are correct, there is no cure! But you can get some life back with busting and other things people have suggested. I have been where you are and got some relief only to go back. It’s a life long fight and I am thankful for this group of people that have helped me cope with this life.
    9 points
  13. Hi NIck!! I suspect that many of us can recall exactly when we were first hit. None of the stories are happy. First step is to find your triggers. Booze is #1. Strike that off everything. Period. Get scans done. You have that in motion. If you have CH? They will tell you that your scan was 'perfect' or 'clear'. You are eliminating other bad stuff that is treatable, not getting 'we see'. You have no reason to think about chronic or episodic currently. You may not have CH or you may be starting out at a low level episodic. Currently, get the tests done. avoid booze, then access your situation.
    9 points
  14. https://www.washingtonpost.com/health/cluster-headaches/2021/04/02/66ac73f0-8cdc-11eb-9423-04079921c915_story.html Great, in-depth piece yesterday that brings visibility to Clusters, our battle, and the struggle for acceptance of psychedelics as a treatment. Thanks to Bob Wold, Dr. Emmanuelle Schindler, Dr. Larry Schor and others for their continued support and pushing the message for the benefit of us all
    9 points
  15. My greatest fear over 23 yrs of episodic was that it would become chronic. I was obsessed with the thought. Used to dismiss comments on ch.com that chronics preferred it to episodic.... thought they were nuts. Then it happened.... and the reality was FAR less than the fear of the unknown had led me to believe. Hits were lighter, aborts worked better, triggers were reduced or went away, depression lessened. It still aint no damn fun...but if ya got the right attitude, a plan and the right tools..... it's controllable. Best Jon
    9 points
  16. Hey everyone wanted to drop by here and also wish everyone a wonderful Christmas ! Also wanted to sneak in a very heartfelt thank you to all the mods and everyone who contributes here. I'm the partner of an episodic CH-her who was in the depths of hell last year over the course of a 15 week cycle (normally 4-6 weeks) usually with cycles every 18 months or so.. I came here in sheer desperation and despair and you all welcomed me with so much encouragement and guidance... it's been over a year and he seems to be doing well so everything crossed it continues. Here's to 2024 being the year where a genuine cure and/or readily accessible treatment is available to everyone here with this condition - you are all some of the toughest most resilient people out there.
    8 points
  17. Hello everyone, i wanted to post something positive on the board. After 11 weeks of clusters, my longest cycle ever, I am finally pain free. It took weeks, a ton of oxygen and a ton of anxiety but I finally got my brain under control. I bought the rc seeds but never used them. I am still looking at using stuff in the future but still have a lot of questions and concerns. I hope that everyone is pain free out there and if you are in cycle continue to fight on.
    8 points
  18. Hey everyone. I posted earlier but I don’t think it went through. So I have been posting for years in this chat now about my fear of flying (in our out of cluster season). And I finally flew. It was a short flight, so I cannot comment further on length affecting a cluster. My flight there I had zero shadows or headaches during ascent or descent. I had almost a gallon of water leading up to the flight (the day before and that morning). I upped my verapamil dose by 80 mg and I loaded on the d3 regimen a week prior. I had a Red Bull at the ready, just in case. Also 2 500 mg Tylenol before take off and landing, and a ginger capsule. coming home: I went on no sleep the night before because my flight was at 5 am. This was dumb but I didn’t really have a choice. I was SURE this would trigger me, also it was daylight savings time. I drank about the same amount of water the day before and leading up to the flight. I bought a Red Bull, and I also prepped by taking 2 500 mg Tylenol. During ascent I started to feel tight pressure on my cluster side, no pain, just pressure. I chugged my Red Bull, and it went away instantly. I stayed hydrated the rest of the flight, and felt no further pressure during descent. I did not need to use any suma injection or steroid taper. I am not currently IN cycle, but I find with my clusters If I hit one of my triggers I will get an attack regardless. I am very VERY excited over this. My fear of travel has been depressing for the last few years. I hope this info helps everyone
    8 points
  19. Update: This has continued to be effective, but he was still having occasional less severe attacks, especially when the weather changed which has been happening a lot recently where we live. Added Quercetin twice daily to the schedule about 10 days ago, seems to have helped even more. Only one attack since then. He’s even been able to have a couple beers without a headache which has previously been unheard of.
    8 points
  20. Happy New Year ya'll! Hope everyone enjoyed the celebration......meh, I turned off the tube, put on my jammies, and went to bed at 8:30! So , I ran across this poem by our very own @Fast Eddie ....I'm fairly certain it's posted here but it's been a long time.....I first heard it at either the Portland conference in 2010 or Las Vegas in 2012 when Eddie recited it....great poem by a great guy! ‘We call each other clusterheads" by Eddie Langford There are many types of headaches I'm sure you've had your share From stress and strains and migraines To a sinus one here and there But let me tell you about one friend That puts them all to shame This headache is a demon And a cluster is it's name To see a full blown cluster Is a very scary sight It can happen in a moments time No matter day or night It is the worst pain known to man It will put us on our knees We pray someone will knock us out And give us some relief We call the start a shadow A sensation in the brain That says "the demons coming back" To taunt us once again The brain turns into cornmeal mush The eyeball starts exploding We moan and cry and rock our heads There’s no doubt how bad we're hurting We call each other clusterheads Our tiny little crew Of others who are just like us Who know what we go through So please don't say you understand Just what we're going through Unless you are a clusterhead You haven't got a clue DD
    8 points
  21. Just want to say a BIG THANK YOU to Bejeeber,Spiny,Freud,CHfather,Jon019,Dallas Denny,Xboss and Fun times I'm pain free got my sanity back feel like I've got my life back, got so many more tool to fight the beast when he decides to reappear. As I said I'd never spoke to any1 who has suffered with this s--t before I found you guys and this forum , THANKS again
    8 points
  22. Thanks MaxHead for posting the article. Yeah it turned out pretty good. It was great that the author interviewed and quoted a lot of good qualified people like Dr. Schindler that gave the treatments and clusters in general, the respect they deserve. The author is a Pulitzer Prize winning author so she carries quite a bit of weight and the article is getting a lot of attention for clusters. Thanks for everyone here that has helped keep these fires burning all these years. Its been a team effort. Way to go team ;-) Bob
    8 points
  23. Check the links in the description Cluster headaches are one of the most excruciating conditions known to medicine. They destroy lives and drive many patients to suicide in order to escape the pain. But psilocybin and related substances can provide dramatic relief for many patients. Help them get their lives back. Support legalising access to psilocybin and related substances for the treatment of cluster headaches. More information here: https://www.preventsuffering.org/clus... Read our November 2020 policy paper "Legalising Access to Psilocybin to End the Agony of Cluster Headaches": https://www.preventsuffering.org/wp-content/uploads/2020/11/Legalising-Access-to-Psilocybin-for-Cluster-Headaches-Policy-Paper.pdf
    8 points
  24. MAPS notes Just finished attending the last lecture of the Multidisciplinary Association of Psychedelic Studies (MAPS). Coined Psychedelic Studies 2017 this was the largest (to date) gathering of professionals, academics, lay therapists and those with a life long interest in the benefits of psychedelic modalities. There were researchers, clinicians, advocates and enthusiasts sharing data, experience and advice. Among those at this robust and vigorous event was Bob Wold representing Cluster Busters at an informational table and Brendan Burns sharing his personal story and knowledge. Emmanuelle Schindler presented the clinical study design and rationale setting the stage for presenting solid data at future meetings. Our cause was well represented. Certainly our situation is a bit one off from the mainstream but it is important we don't let the avant garde of this exciting movement forget our interest as psychedelics rapidly reenter current therapeutic options. I attended many of the talks and wish to provide a high level summary of some of the talks that may be of interest to those considering alternative cluster treatments. The videos of specific presentations are going to be available on You Tube and searching MAPS with the presenters name should guide you to the source. The program should be on the MAPS sight. No claims are made of unerring accuracy, lack of bias in interpretation or completeness. My best is all I have to offer. Stanislav Grof opened the lectures and included his work on breathing techniques to produce a psychedelic state. He is a well loved researcher in LSD psychotherapy prior to making LSD illegal and developed these techniques in the void left by draconian legislation. Many workshops have evolved based on his techniques and components are reminiscent of what Batch has suggested. There was much about herbal roots from around the world I don't want to spell but since we have limited input on things other than LSD and psilocybin I leave their usefulness to inevitable discussions. MDMA got lots of attention but no data for us. Sounds like great stuff for the right application. These will eventually crop up in one form or another. I will also reserve judgement on the large number of folks bemoaning their migraine experiences to Bob. The guy suggesting a stem cell transplant fixed his clusters will go on the shelf for now, Heaven points for Bob. Psilocybin was discussed in a significant number of presentations. The context was in death and dying, addiction, PTSD and pharmacology but the message was loud, clear and repeatable. The use of psilocybin in these context is safe, effective and long lasting. This included measures of anxiety, mystical experiences, squashing suicidal ideation and overall improvement in sense of self. Trait measures of forgiveness, life meaning and faith maturity are amplified in a sustained way. Psilocybin was given in a safe set and setting and included psychotherapy and counseling. Look up work at Johns Hopkins and NYU. Neuroimaging studies report pretty consistent findings. There is the well known interconnection throughout the brain on psilocybin. Decreased blood flow is seen in the Cingular nucleus. This results in slowing or blocking the brains inhibition of data inflow allowing for freer communication. There is desynchronization of the posterior Cingular nucleus and decreased inhibition. Basically psilocybin is believed to inhibit the inhibitor and allow free flow of information. Interestingly the brains Default Mode Network (DMN) decreases with immediate dosing but in 24 hours and then increases in a sustained way for a long time. Similar changes are seen in experienced 1000+ hour meditators. Meditation showed similar findings to a dose of psilocybin 25 mg / 70 kg. The posterior hypothalamus is activated by psilocybin and this activity can be affected by hormones, genetics and inflammation. UW- Madison presented participants in a pharmacokinetic study looking at dose relationships and physiologic safety. It was a Phase I trial to establish safety parameters. It was very safe at all doses. There were 3 dose regimens given a month apart and dosing was based on body weight. 0.3-0.6 mg/kg body weight. So if you weigh 154 lbs your largest dose was 42 mg. That is equal to 6.7-8.4 grams dried shrooms. (4 grams dried is equal to 20-25 mg psilocybin). No adverse physiological events and the participants report sedate to wild experiences. They sought each other out after the study and remain bonded. The question of dosing by body weight or standardized dosing was addressed. Study's showed no difference in outcome measures related to body weight. The experiences where all over the place irrespective of dose and body weight. Seems you get what you need? Looking at bad experiences on meds (bad trip) demonstrated guidance through the event in a safe set and setting was effective. Most related the experience to be profound even if seemed negative to sitters while occurring. Good experiences and bad experiences were latter judged helpful. Look up the Zendo project on psychedelic harm reduction and study the tenants of safe place, talk through not down, sitting not guiding and difficult is not bad. The biggest impression was all the 70-80+ year old wandering around with extensive experience in psilocybin and LSD use. Of course these represent folks who see a profound benefit of these substances in their lives. They are healthy, intelligent productive folks with mind blowing exposure to these substances. A pretty good real life testament to safety.
    8 points
  25. I got an appointment with Dr. Marmura at the Jefferson Headache Center!!
    7 points
  26. Merry Christmas to all of you sufferers and all of our supporters! You all are appreciated beyond words. This site, the folks on here and those behind the scenes that support us are nothing less than a God send. The words, the compassion, the support, the empathy and the gift of companionship will always be a gift that thanks will never be addaquate enough for. Merry Christmas to you all!
    7 points
  27. Bob is the opening speaker. Joe is catching up on his beauty sleep.
    7 points
  28. I tend to keep my hand on the regulator as I am using my oxygen and adjust it up and down as needed. I try not to let the bag overfill to the point the oxygen is coming into the mask before I am ready for it. I change my breathing up almost hit to hit as needed. Sometimes long deep breathing works and others short faster breathing helps me better. It kind of depends on the situation and how fast I get to the 02 tank and get started. I will also chug down a 5hr drink to give the 02 a jump start, grab an ice pack and find a effective pressure point to apply that to it, Also changes per hit, and adjust my seating position. I am a sitter not a walker so stretching out my back or doing a crunch or both will change the effectiveness of my 02 sessions. By the end of the party I am breathing at a normal rate at maybe 4 or 5 lpm on the regulator.
    7 points
  29. Thank ya'll for your comments, kind words, support, and love!! Just wanted to provide ya'll with a miraculous update this morning! I'll never be able to express adequately my gratitude to my surgical team at the hospital and the entire staff at my rehab facility....I am so blessed to have had them in my corner!!! Neck surgery on June 7th, major back surgery on the 10th, and at 11am this morning, June 21st,.......2 freakin weeks later ya'll.....I'm going to walk to our car under my own power, albeit with the aid of a walker, and my Bride is taking me home to our cabin in the woods!! Did I mention that I'm blessed beyond belief?!?!??? My love to all DD
    7 points
  30. Dear friends, thanks a freakin lot for the overwhelming and cheerful days at the Glasgow conference: Ainslie & board, speakers, volunteers and everybody joining: it has been my very first one and i'm still riding the waves of cordiality, joy, information and togetherness that we have been sharing. Thank you so much for this extraordinary experience, for including me so heartily and for spontaneously making me the conference photographer Not naming anybody here - my love goes out to all of you as i share some of the images below. I was not prepared equipmentwise, tried to make the best out of it and i am now done with processing them. Don't worry about your memories: the lighting atmosphere of the pictures is quite a bit colder and lighter than it has been at VOCO conference rooms. But the original massively yellow hue and the poor colour rendition of the lighting finally led to rendering all a bit more neutral. Hope y'all can find and enjoy yourselves on the pictures. Here's a link for downloading and saving all the images in a better resolution (1920p, 300dpi). Also please let me know if you don't want to appear here. Love and some more big hugs from Berlin !
    7 points
  31. Flight went absolutely seemless. I better not jynx the trip home lol
    7 points
  32. I've not been in cycle for a few years now and O2 is my primary abortive when I am. I have not used a triptan in very, very long time, but I still carry one in my pocket everywhere. I will not be caught out and get slapped around again. They have a place in our treatment plan but IMHO they should not be a primary abortive. The more you use them, the more you need to use them. People may deny that, but they are only fooling themselves.
    7 points
  33. Got to love a straight shooter I completely agree with @jon019 on this one. This bit just makes me wonder about the influence being interjected on this individual. Seems that it could be a Dr. that disagrees with alternative medicine or even a family member that is unsettled by the thought of medicating with alternative (non-pharma) meds. Either way, my personal experience with triptans was awful. Sure, I got a good 20 to 30 minutes or so of reprieve from the use of the nasal sumatriptan and sometimes with maxalt as well. In the end what sealed the deal with me on triptans was a slowly ramping up cycle where I had believed my neuro that said I absolutely must take the medication at the slightest hint of an attack (I believe this to be true for migraine not so much CH). About a year ago, I did just that and experienced the looongest, worst hit filled cycle of my entire CH career! I hadn't understood the way my CH worked at the time and thought even one spike meant the end of the world as I knew it. Turns out that sometimes I get random spikes then nothing for months after. Since ditching the triptans (knock on wood) I have never experienced anything of that sort again. Do I still keep a few nasal sprays in my purse.. Yep I sure do because if I'm in a critical client meeting where I could stand to loos a project for the company I could use 30 minutes to buy me a close and am willing to suffer to keep the ball rolling at the firm. Anyhow I felt compelled to respond to this as my experience with triptans was so bad that I have road out many a hit without them for the simple fact that I knew in the end I would be better off for it.
    7 points
  34. Hey CH family, just wanted to check in. I am still managing my headaches pretty well. I haven’t had to bust in a while. I also haven’t had to use my O2 tank in over a year…YES I am serious. It’s been forever. I haven’t even renewed my script for it because my insurance doesn’t kick in til January…oh well. I dare to say I might even take a flight soon…I have been terrified to fly since my diagnosis in 2019. Also I have really bad anxiety when it comes to flying. Any advice on flying and Ch? I’ve asked this before, and I’ve read almost every post on it. Just wondering if anyone has any new advice or suggestions. anyway, I hope everyone has a safe holiday month coming up. Things are crazy out there. Still eternally grateful for you all and this site. Cheers kat
    7 points
  35. Thought I'd post this on the public forum for all to see (as well as the bot scrapers. https://www.yahoo.com/news/colorado-voters-decriminalize-psychedelic-mushrooms-155152202.html The word on medical use for mushrooms is getting around!!! (Please don't share any personal information in this thread so we can keep it public Love All, J
    7 points
  36. This is one of the best, most complete pieces on Cluster that I've seen. No surprise given who the authors are, but I thought everyone should see it if you haven't. Not tons of new information for those of us who are battling daily, but the main intent of the article is to raise awareness and education in the medical community. https://www.bmj.com/content/376/bmj-2020-059577
    7 points
  37. Hi all. Here is an interview explaining the Vitamin D Anti Inflammatory Regimen for cluster and migraine headache with Pete Batcheller, the cluster sufferer that came up with the regimen. (re-film of previous interview with new slides etc). If you've been thinking about trying Vitamin D3, have heard about it for overall good health or have questions about the regimen, i.e. how it works, what if it doesn't work, safety, testing, general supplementation questions etc. then this video will hopefully be of help to you. https://www.youtube.com/watch?v=SofbDDhmQUs As always, Batch - thank-you for your contributions. The Vitamin D Regimen for me personally has been absolutely amazing.
    7 points
  38. G'mornin ya'll! A few years back I had the pleasure of meeting and mentoring a fellow clusterhead from New Zealand on Facebook. Along with embracing busting as a treatment for his headaches, Craig became interested in Batch's D3 regimen....really interested!! So, he has teamed up with Pete and began working on an animated production explaining the regimen....this morning he posted this video on his YouTube channel along with our beloved Batch!!
    7 points
  39. Happy New year to every CH sufferer. And every CH supporter We are 1 of a kind and we need to stick together
    7 points
  40. Hey folks sorry for the delay it’s been a bit of a clusterfuck lately w the move/transition But I’ve finally found a doc that is comfortable w ketamine and CH. we started w nasal spray and troches, and they do infusions which I’m going to try and work in per their recommendation . They don’t advertise that they do infusions like all the money hungry places here. They recommended I do infusions to kick back the beast so it responds more to the at home ketamine. ... they are more affordable as well. Found a pharmacy that charges 1/4 the $ as I was paying before... I can breathe again wooo hooo!!!
    7 points
  41. Hi! Welcome to the forum. You should be excited because life gets better with Cluster Busters.
    7 points
  42. Hey BoscoPiko, Cluster headaches are very sensitive to serum oxygen concentrations. If the partial pressure of arterial oxygen (PaO2) drops below a given threshold as it will when flying at a cabin pressure equal to 7,000 feet altitude (2100 meters) in most commercial airliners, PaO2 will drop by 30%. This opens the door to the CH beast jumping real ugly. The same thing happens when we sleep as our respiration rate is as low as it can get while we're alive. The low respiration rate also causes an increase in the partial pressure of arterial CO2 (PaCO2). The combination of low arterial oxygen and high arterial CO2 makes for a perfect storm occurring as most of you know, one to two hours after falling asleep. If you're an episodic CHer in cycle or chronic and need to fly, take a couple Imitrex (Sumatriptan Succinate) 50 mg tabs an hour prior to takeoff and carry an Imitrex inhaler or Imitrex SC injection pen during flight. If you're a CHer maintaining a CH pain free status taking a vitamin D3 maintenance dose of 10,000 IU/day and cofactors, take a 100,000 IU loading dose of vitamin D3 24 to 36 hours prior to the flight. The following chart illustrates the changes in vitamin D3 and 25(OH)D3 serum concentrations following a single oral dose of 100,000 IU vitamin D3. Take care and keep your immune system boosted with vitamin D3. V/R, Batch
    7 points
  43. Happy to see your post Shaun!! As I've said on many occasions here over the years, "One more cluster soul out of the darkness and into the light!" DD
    7 points
  44. Politics. I would like to suggest a return to CH specific discussion here, while enjoying the political discourse elsewhere. I can see that so far there are some folks on similar political wavelengths offering views, but can assure that political views of members here - all very good people - are all over the map. The more political it gets, the more divisive it will be, while we CH'ers need to be sticking together during these ultra hot button political issues times.
    7 points
  45. To all, This is a dream come true. https://www.clinicaltrials.gov/ct2/show/NCT04570475?sfpd_s=09%2F16%2F2020&sfpd_d=14 This is the gold standard RCT protocol I've been working with Dr. Mark Burish, MD, PhD., Will Erwin Headache Research Center, UT Houston School of Medicine to develop for almost a year at this point. We cut a lot of corners getting the protocol down to two pills with two look alike placebos and no loading dose, but I'm confident this dose will result in at least 70% of CHers responding with a significant reduction in the frequency of their CH during the course of this protocol. Take care, V/R, Batch
    7 points
  46. I have no idea what this is about but I feel so sorry for everyone involved. I feel sorry for us. I am a naive human being who wants to believe good in people and honesty is essential in everything I do in life. For the longest time I thought that having a cluster headache somehow shelters one from being or becoming dishonest, or manipulative and such. It does not. In my eyes clusterheads are more compassionate and understanding than an average joes but maybe due to our extreme, violent, mercyless and for some very prolonged suffering we have our exceptions to confirm the rule. C'mon. We are the underdogs already, big time, with all that we are up against in life. Be kind, to each other, to yourself. Respect to admins. Not an easy task you have to carry out year in year out. PF wishes !
    7 points
  47. Hi blueblueblue, So how is the migraine coming along? - only kidding! Sorry to hear of your troubles and welcome to the group. There is an extremely active closed discussion group on a certain other social media platform that you will be told about, featuring many of the Clusterbusters group members. You need to attend the annual Clusterbusters meeting in Denver, middle of Sept 2018. I am happy to facilitate an early office visit on your request-if you are interested message me with your contact info, I have not been on here in a while but will keep an eye out now. Regards, Brian E McGeeney, MD, MPH, MBA Neurology Dept, Boston University School of Medicine and Boston Medical Center.
    7 points
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