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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. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. A week back on the ket and already my CH is much better!!! Decreased frequency and intensity for some hits. Slept through the night last night...
    7 points
  15. 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
  16. Hi! Welcome to the forum. You should be excited because life gets better with Cluster Busters.
    7 points
  17. 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
  18. 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
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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
  24. ER CARD, While I was on the Board of Directors at O.U.C.H., we developed a Medical Alert Card for Oxygen Therapy for CHers who had to go to the ER with bad CH. The document is signed by the CHer's neurologist or PCP explaining the bearer suffers from Cluster Headache and needs oxygen therapy as a CH abortive at 15 to 25 liters/minute STAT! The thinking behind this card was that it would help eliminate most of the Stump the Dummy questions frequently asked by ER receptionists and get the CHer oxygen as an abortive as fast as possible. Take care, V/R, Batch The quality of this image is not that good. Unfortunately, this web portal limits attachments fo 23 KB and that's not enough for the original pdf document. Take care, V/R, Batch
    6 points
  25. Juss, you are referring to a FB Group that is well known by many here. They are not 'us' and push/prefer Pharma for money reasons. You click, they make money. That group, is not any part of our group here and we were around for about a decade before they formed. And they will throw you out for mentioning MM. Please, take a step back, reread some of our responses to your posts and think about it. We, as a group, have tried to understand you, help you, and support you. For BPD, Dialectical Behavior Therapy has proven highly effective. It was developed for BPD. My child, with this disorder, has had only one meltdown in 8 months since she finished BPD Therapy. Normally, she would have had at minimum 10-12 meltdowns. Her IQ, is above 150. As I suspect yours is. Which makes the disorder even more difficult. I have seen it for decades now. It is horrid. My heart hurts for you. I wish you health and happiness. I wish you peace. I know that peace might be the most difficult thing to attain. For your posts on the board, please be kind and positive, or just scroll on by the post. spiny
    6 points
  26. WOW. I never thought I'd see this in my lifetime. It's one step closer for those of us with CH being able to get medicines from a doctor that actually help stop our CH.. It looks like there's a lot of bureaucracy wrapped around how they'll manage it, but I'm sure it'll get easier once the magic spreads (ha ha, just made that one up). https://www.kgw.com/article/news/politics/elections/oregon-becomes-1st-state-to-legalize-psilocybin-for-mental-health-therapy/283-4103d1ba-9d9a-4dc0-9970-6f8cc1288323 Love all, J
    6 points
  27. Everyone has covered it pretty darn well Shaun. I find utter delight in helping one person become pain free. Each of them are special. And I consider them all friends. Stay safe, happy, and loving. Life will be great!
    6 points
  28. Yo CE...so glad you found us... talking, sharing, or just plain ranting with folks who understand and care can be incredible "medicine" all on its own......and then ya got spiny! kept reading that truly wonderful post to throw in something...but there weren't no room. Golden!! ...all i can say is that it makes me sad and frustrated that somewhere along the way there was no OXYGEN given. guess it goes along with the clueless misdiagnosis, but every medical reference i've ever seen (from the 80's on) acknowledged that O2 was THE recognized abort. safe, fast, easy once dialed in, ways of making it inexpensive, and none of the nasty side effects we all know so well with the migraine drugs thrown at us. may not work for all, but does for more of us than anything else...save maybe triptans. you've never been given, Imitrex (sumatriptan), Zomig...or any other triptan..or they didn't work? i'm shocked. OXYGEN can be a game changer...saved my sanity, perhaps my life. That should be your first step.... best jonathan
    6 points
  29. Yes, the usual amazing post from spiny. Like her, I have to ask -- Only Emgality? That would be very unsatisfactory. The Emgality might work, but there are strategies to get you out of pain now. And regarding that Emgality prescription, it is for 300mg? That's what is needed for CH. Even with a migraine diagnosis, you should have been prescribed Verapamil and some kind of triptan (perhaps the injectable form, Imitrex, but maybe tablets or a nasal spray). Did none of that help you? spiny has covered it all so well that there's not a lot to add, but this post might have something useful for you to know: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
    6 points
  30. So sorry to hear you are struggling. Sounds like you are going to need a fusion which are highly successful procedures in most cases. Will likely lose some range of motion but the pain will be gone so it seems like a far trade. Spinal surgery is not for sissies and since you are anything but a sissy you will do well. Make sure you have someone who has been at it a long time, has a good volume of experience with the procedure and is nice to your wife. Stay strong.
    6 points
  31. First of all, the "pain in my head constantly" may be what we refer to as a "shadow." Clusters are referred to as the Beast. Makes sense, huh? As to your other point, I have to remind myself at bedtime that if I wake up and wonder am I having a cluster attack, I am, and I should get right on the oxygen. The abort is easier. There are some documents on this website under patient resources about how to make the most of your oxygen experience (doesn't that sound romantic!). Also, Four cycles in nine years is, as you point out, lucky. I used to be episodic, one episode a year for 6-12 weeks with headaches only every other night (sleep and alcohol are my triggers). Slowly over 41 years my cluster disease has progressed, and now I'm chronic with 3+ attacks every night year round. Lots of resources here, glad you found us. We are, I think for the most part, people for whom the medical world has not really made a place (although thanks to Clusterbusters and others that's getting better), and we are each our own guinea pig, experimenting to find remedies and prevention that work. All the best!
    6 points
  32. Hi Fern and welcome. Glad that you found us! You will find a lot of info in the blue banner above that says New Members.... Avoid MSG, alcohol, fermented foods etc. Eat clean. Msg can bring on one right quick for some. Caffeine: In an Energy drink or shot, V Energy, or coffee. If you can hack the Energy shots, some say the taurine in them is helpful. Otherwise, any strong caffeine. Most want them ice cold. Slam it down - drink quickly, at the very start of a hit. You can hyperventilate too and exhale with a crunch to get rid of the CO2 in your lungs. Many will suck in the cold air from an AC vent in the car. There are proponents of ice packs too. A really hot bath - shallow - helps some by opening the blood vessels in the legs. I have sat in many a screaming hot bath. I just kept adding more and put a cold cloth on my head. Well, cold water type cold. Not ice! Benadryl can help a lot too. Take only at night if it makes you too sleepy. Also, there is Melatonin in the 20-25mg amount. Do not take both at once! Try one, then when you know how it affects your balance, etc. Then you can add the other. Add the Melatonin 10mg to start. Or less. If you get hit at night, then sleep in a recliner with your head above your heart. It will enable you to get up and hitting the caffeine, cold air, hot bath, whatever works for you. We are all different. Some get great relief from an ice cube held against the roof of the mouth on the CH side. How about your experience so far? Share a bit so we can help you better.
    6 points
  33. Last night again--- pain free! I think (hope) I am done for a couple years. I consider myself incredibly lucky in a lot of ways. One is knowing/hoping my shadows will be gone for a couple years. If I disappear for a couple years, just know you all have helped a ton, even just by knowing there are people that understand this thing, and there are people helping people and doing incredible thngs making traction toward a brighter future. And isn't Batch an incredible man! Holy! It's like he was put on this earth to help all of us. Just incredible. Wishing all of you peace and serenity and all the joy and happiness possible. Goodness knows you've all earned it!
    6 points
  34. Sorry..I'm smiling and laughing, ...oh we get that, no problem......sometimes ya just have to. there are so few times in life when you can laugh and cry at the same time. still vivid memories of catching my bawling self in the mirror a couple times during a real bad cruncher, and bursting out laughing: hair askew, eye closed, face crooked, snot/spit/god know what else smeared all over....who IS that guy!?.... I think, because misery loves company. It's so nice to have people that understand this "thing" ....ask, share, support, make shit up, vent, whatever...we care! clusterheads/supporters are our own best, frequently only, advocates and company...we have to be.... This is my first time trying verapomil. Well the one last night after sleepng 4 nights with no attacks...that's what's concerning. ....oh, i thought you had more experience with it. my experience and observations of most frequently reported over the yrs: takes a 10-14 days to work (which is why a concurrent prednisone/methylprednisolone iv/taper is standard western med treatment), takes a while to dial in, just when ya got it figured stuff changes. 240 mg is a low dose, many go higher (some much higher) so best to start low and build to higher levels if needed. more reported success with immediate release vs extended. lotsa water/fiber to keep things moving along. timing doses to expected hits sometimes helpful. highly recommended to do baseline ecg and repeat as dosage increased significantly due to possible heart rhythm effects (reversible upon discontinuation). a headache specialist neuro (regular neuros can be and usually are as ignorant of CH as regular Dr's) is familiar with high dosage tolerance in cluster patients and can guide you through up/down tapers as well as other control measures. there are those who believe extended use causes ECH to turn CCH. again, an experienced HA specialist would have thoughts on this. i used verap for 7 yrs before dialing in the OXYGEN, energy/drink, D3 and zomig ns. turned chronic 2 yrs after...so never felt a connection. chronics will tell you they'd rather be episodic, episodics just the opposite. having been both, to me it's all the same shitshow, just a different channel. most all tools work, just in different ways....only you can figure your best path. Also worth noting--- I took melatonin last night, 1st night in 4 ....good on ya for finding that, many find help there, be willing to adjust dosage. Benadryl (diphenhydramine) also helps with sleep and allergies that may trigger hits... I like the suggestion of wriiting down possible triggers etc. I have been taking note of attack times start and end. First time ever, because traditionally, I didn't need to---if I was 11:01 pm, it was 11:01 Pm til I was done, apart from the final blasters, which I could never ever get away from.....it's the weirdest thing---i can never get away with no blasters at the end...If I OD'd on pain killer, like rizotriptan, timing it perfectly.....the devil would say-- "nuh-uh boy, I'ma hit you at 3am then.....no free rides asshole." ...a log is a great idea, if you are organized about it there is lotsa great info to be gleaned.... ...i used to PRAY for that last screamer...knowing a) this is gonna be bad!! b) yee-haw, it's gonna be beer-thirty in a few days!! it's all relative... I'm going to try the Vitamin D3. ... do all the regimen...no dabbling.. Have not tried O2 yet, ...YESTERDAY!...there are countless clusterheads who can testify to OXYGEN as a LIFE CHANGER! 15-25 lpm, non-rebreather mask/demand valve/direct from hose, and dialed in (for you) breathing technique all vital... and definitely I normally stay away from energy drinks.....but perhaps not anymore. ...totally understandable...i've never touched one outside of CH need myself....but, incredible difference maker used judiciously. some prefer just a high dose caffeine beverage...really hot or really cold for whatever you use can help... But my attacks, the worst ones anyway, come and crack me one after I'm sleeping......however, all of you know that there are worse things than being jacked up on energy at 2am....ummm, like for instance---being tortured behind your eyeball .....nothing regular or planned, but i could pound caffeine and be asleep in minutes....many others report same.... I'll say it again though, it is nice to be among people that know exactly what it is, and I don't have to explain it to friends and family....only to hear- "Oh yeah, I get bad headaches at work too, it sucks kinda bad" ..yeah, sorry, you don't get it my friend ...if ya want a chuckle check out this link: New CH.com Forum - Dopiest responses to CH (clusterheadaches.com) ....poke around the rest of the ch.com site too...priceless info therein....
    6 points
  35. Hi all, A pretty unusual post this! In the last six months, I've had some testing periods with CH. These experiences lead me to write a couple of songs inspired by what I've gone through. I figured it would be cathartic to share the recordings (only rough demo tracks!) with the community here. It got me wondering whether anyone knows of any professional/famous artists who have ever released songs inspired by CH?! Anyway, here are links to the two songs. I hope there's something there you can associate with - if not, that will say a lot about my song writing skills Until The Next Time - https://soundcloud.app.goo.gl/fqGAE Two Sides - https://bit.ly/3hupDYB Best wishes to you all, Drewbie
    6 points
  36. 'I guess your doctor forgot to give you the jerk free pass card when they told ya you have clusters.. I got 2 of them and a card allowing me to be an ass twice a week.' Agreed, we all need at least one of these!!!! Bosco, we learn to laugh about it over time I think. Sort of laugh or cry? I'll take laugh any day. Let the anger about it out, scream to the heavens and then get on with life. I suspect it teaches us to value good times a lot more than many do and that is a gift to be savored. Fun Times made a great suggestion regarding RC seeds too!!!
    6 points
  37. Happens to most of us if not all. I feel mean, sad angry and I lash out at people all the time. My wife will sometimes remind me that im being an ass and kind of bring it to my attention but she understands why I am this way. As far as staying happy? I just kind of think about the ones I love and I am thankful that this is all happening to me and not them. I can deal with this my own way but if someone else had clusters then I would be one of the ones who just didn't get it. I know it will pass in a few days or weeks and I will feel better again. I am chronic so I have forgotten what it is like to be pain free for more than a day but I do have days that are better then others and I try to enjoy them. Depending no your location you may be picking up some sort of allergy from being out with your horses. you might want to look into the vitamin D3 by our member here know as XXX. I am sorry if you posted about this already and I missed it but how else are you dealing with your clusters? Coming on this site and venting about how your feeling is huge! people here understand and will help you figure it out.
    6 points
  38. Ok, sorry for the time gap, but as we all know, that when we have any PF time we take advantage of it. Yes I am a hot mess atm, but that's the life of a cluster head. lol So, before I get to what I've been up to, I will start by saying again, THANK YOU!.. Most of the time, it feels like no one can hear me (us) without misguided judgment. We are all fam here, even if we disappear for a spell or two. And CHFather, you are a guiding light of hope for so many here, I cant even imagine the amount of desperate souls you have given hope to. Kudos, my man. Ok, let's get down to brass tacks. Xboss, I feel for you brother, 100 days is a rough stretch. My first introduction to trex shots turned me into a chronic going from a lifetime of about a two month cycle to two years. Then I forced myself to back off of using them every time, tapered down to nothing and the cycle broke a week later. Now I use them sparingly, especially to avoid rebounds. Now, I had requested and old script of 02 with my new doctor, only to be told that he couldnt do it (stricter rules these days, I guess) and referred me to a neuro, who I was kinda rude to back in 2014 because I refused her suggestions of carbamazapine and some anti seizure meds, I guess I was expecting a better answer than the one I got. However, I will discuss nerve blocks, emgality, 02, and botox with her when i see her next week; aaaand possibly an apology I guess. Although, Im sure shes used to cranky CH patients, by now. lol. Ok, all of this is going on right as I am finally starting the career that I have been working towards for almost a decade, and I LITERALLY started my first day today, as a medical lab assistant here at our local hospital. Its my foot in the door, while I finish my radiography and imaging degree within the next year and a half. THIS lifelong torture demon we live with is my driving force to get into healthcare in the first place....and I finally made it! NOW, I DONT WANT TO RUIN IT BECAUSE OF MY DISEASE! Like many other jobs in the past. My manager really likes me and has the low-down on my condition, and I promised to manage it the best I can until the cycle is gone. I had restarted the D3 regimen minus a few ingredients, and It seems to raise my BP (Oh yeah, Ive become hypertensive in the last year) which then triggers one every time. So I backed off. I detoxed 5 and 5 for mm, and will again in a few days, BUT, I think I may have found something of interest. I stumbled upon some studies conducted on B1 (thiamin) deficiency and CHs, and head tremendous pain relieving results, with high doses tapered up to 750mg a day to break the cycle, and back it down to 600mg a day for maintenance. (with NO DETOX! I took 100 mg last night and 200 this morning (with food). Going for 300mg tomorrow, and have only had one little shadow. I will keep you all posted on my results. Thank you Vajenna, you are right, D3 really does work under the right conditions, because it has always done wonders for me in the past, until recently. But I plan to get back on a lighter regimen when this cycle is gone, along with properly spaced dosing of mm. Jon, I appreciate you! That, was a comforting response, and I thank you. And je3wook, OMG I felt this!!! Hang in there. I have weak points quite often in every cycle actually, but something else has always seemed to keep me going, even before I had kids. I wish you a painfree break soon no worries, we have some incredible and compassionate minds on the case. We will find a cure soon!! Love you ALL!!!
    6 points
  39. I guess not permanently, but I have been in remission since 2011. Last cycle (2011) busted with RC seeds.
    6 points
  40. Just wanted to say Thank You for everyone here. Last February 6th I started the roughest cycle I had ever been through in 17 years of dealing with Clusters and everyone here was nice enough to help me get through it. My mind did wander to some bad places during that cycle and it no longer does as the wisdom of this group brought me to the right place. Thank You for all you do.
    6 points
  41. Hi all - just wanted to post a little positivity as I feel like I’m really on top of my Clusters at the moment and wanted to pass on my success (or what we could call a success with a condition that has no cure!) 39 years old - Episodic CH since I was about 21. Really struggled through my 30s with some very long episodes and not managing the pain very well. 4 years ago today I was in the middle of a mega-bout - 3 months in and crying on the floor asking my wife to kill me. I was splitting Imigran injections to have 4 of a day, nasal sprays, 6-7 melatonin gels every night and getting through 2 big bottles of oxygen a week. I was a mess and CH had just taken over my life. Tried magic mushrooms which unfortunately was an awful experience as well. Finally went to see a CH specialist doc who turned things around for me, weaned me off the Imigran injections and sprays and put me on verapamil. His opinion is that there’s a dose for verapamil that will work for every CH patient, but of course some people can’t take a high enough dose due to health problems / blood pressure etc. Now whenever I feel a new cluster period coming on I start straight on with 560mg verapamil a day (taken in 4 doses over the day), and I’m allowed to up that to 960 if it’s not quite working. I also take 4000iu vitamin D throughout the year now as a matter of course (thanks Batch). Right now I’m nearly 3 months into this season’s bout and my days are completely pain free. At night I’m still being woken by 1 or 2 clusters, but they’re a 3 or 4 pain max and I just roll over to my oxygen, 10mins sucking on the o2 and I’m straight back to sleep. Now I always make sure to have my ammunition tucked away safely at home ready to grab whenever I feel a new season starting: 2 week big-dose Predinsolone steroid dose on a taper - these are to have while the verapamil starts to work as it can take up to 2 weeks. I think the steroids are actual magic as they work within 24 hours and give you a week pain free - you can even drink alcohol, but ideally I think people are only supposed to use once or twice a year due to long term effects. Lots of packs of verapamil stocked piled during my none-CH periods. 2 full Oxygen cylinders in the garage Fortunately I’m in the UK so verapamil prescription costs me £9 for 2 weeks worth and Oxygen tanks are just delivered for free whenever I call up and ask. Thank you NHS . It’s really empowering to feel like you’re winning the fight, and I’m sure I’ll have bad clusters again at some point, but right now I’ve got my defences all shored up and the enemy can’t get through. TLDR: - If you’ve not tried high dose (500mg +) verapamil and you’re in relatively good health, please speak to your doc about it. Remember it can take 2 weeks to feel the effects, and you’ll feel shitty, dizzy and a bit poorly for a few days. It will pass. - Oxygen is a basic necessity and every CH sufferer should have this. - Try and stay away from Sumatriptan if you can - it’s instant relief but with long time problems.
    6 points
  42. All, It's with a heavy heart I have to do something today that I've only had to do once before. Ban someone from the board. This action was not taken lightly. I'll leave details out, but nearly every personality conflict on the board for the last year or so all involve one poster. I've asked politely. The mods have asked politely. This poster has received warnings and yet continues to post inflammatory remarks. There seems to only be one action left so that members here can focus on helping one another, that's the reason we're here and the reason the board is here. To help, not hurt. We all have enough hurt in our lives with CH already. Love to all, J
    6 points
  43. I have heard that Brain on fire has been going through some rough times lately, involving surgeries, PT, and a challenging recovery. This community has meant a lot to BOF, and BOF has provided a lot in return. Best wishes from me, BOF. Get well soon and rejoin us when you can.
    6 points
  44. FYI I know many have been concerned about Freud. He is currently in the hospital making a swift recovery. He will be back on line soon. Thank you for all the prayers and good wishes. Best regards to a pain free future for all, Freuds mom
    6 points
  45. I'm honored to have the opportunity to share my knowledge and experience during 2 "grow demos" as part of this years conference agenda! I've been working on a PDF file documenting all of the Teks and processes that I'll be presenting for several months now and will be putting the finishing touches on it this next week! I've done it all on my Samsung Note and am too technically challenged to figure out how to transfer it to my laptop in PDF format....but our conference chairwoman has assured me that she'll "git r done" for me when I get to Dallas the day before the conference begins. All that to say this.....if you're planning to attend the conference and want to get the PDF, be sure to bring a thumb drive with you......the doc contains a lot of pics and is extremely large so I feel like that will be the easiest, fastest way to distribute it! See ya'll soon!! Dallas Denny
    6 points
  46. Maybe a bit of comparison on my Kipp Scale, for those that have a different interpretation: I've broken my wrist before. It was 10 at night and I didn't feel like going to the emergency room. I decided to go to bed and go in the morning. I went right to sleep like a baby 15 minutes after breaking it. Slept fine got up. Put my wrist in a tshirt sling and went to the emergency room. My kipp level was maybe 3 out of 10. I've de-gloved 2 fingers on my right hand in a sailing accident. The index and middle finger had the meat pulled right off the bone. My middle finger bone was sticking out like a skeleton you see at Halloween. Of course both fingernails were peeled off as well. We were docking a large boat and my fingers got caught in a cleat. I yelled up to the guy on the bow not to dilly dally, that he had to take me to the emergency room as soon as the boat was tied up. I grabbed a hand towel from the galley and ran back on deck spewing blood everywhere. I finished securing the stern and port of the boat before showing my friend what happened. He drove me to the emergency room where they reassembled my fingers. Oh and without any anesthetic. I'm immune to the anesthetic they use for nerve blocks. My peak pain through the entire event was maybe a 4. My pain tolerance is VERY high due to my years with CH I can only assume. I've had 3 kidney stones. Passed one of them. Kipp 5 to 6. Other two had surgery to remove and were maybe Kipp 3 tops. To say my pain levels with a CH K10 are worse than an amputation without anesthetic is a no brainer. My K10's are much worse. Everyone is different, but pain is pain. Support for our CH family here is what's its all about. J
    6 points
  47. Just a few comments on the gammaCore device. As was mentioned by someone earlier in the thread, I think the first inclination on the device should be of the positives it brings. The cost is more a product of our broken and complicated medical system than of it's current cost. The Vagus nerve has long been discussed as it's potential involvement in cluster headaches. So it was a logical choice in research. The company did spend millions on this research and it has an important role to play in the overall need for more research into clusters and helping find another piece of the puzzle. Even research that eliminates possible routes to successful treatments and an eventual cure help paint the picture and help us all zero in on discovery. So, the most important part of this particular story, to me, is the basic research and someone, anyone, investing money into searching for something that helps us as a community that has for so long been completely ignored. The eventual effectiveness of this or any treatment is secondary. Of course we all would hope that this research finds is help but some things will be more of a help than others. Its most important that they keep searching, keep researching. The FDA approved this device because they understood that even of only 30% of the people using it were helped, that's 30% of an entire community that needs help. That's 30% of a community that can find a new option that helps that they didn't have before. I'm extremely happy for those 30%. It should also be important for the rest of us in that there are people looking for things that can help us. That alone should give hope to 100% of the community. Clusterbusters has been trying to help the community since 2002. In many cases its been helping people one at a time. That take s a lot of time and dedication from a lot of people. We appreciate anything that helps just one of us. This is a very close knit community and we know that helping just one person, helps the entire community. When individuals or companies or even government agencies try to take advantage of the community and anyone in the community, we have and will take a stand and try to protect each of us. We have been following this research for many years and we have heard many reports of people getting better results the longer they use this device. Yes we've also heard many stories where it was not helpful at all. Its a similar story for so many of the treatments we choose or have available. We will stay on this and follow up on its success and failures. With the cost being the biggest hurdle for people to try it, we will continue to fight to get insurance companies to cover its cost. As everyone knows, Clusterbusters has always offered help and advice regarding things that people can't get a prescription for from their doctor. We also know that a large portion of our community relies upon staying within the rules and only using prescription medications and treatments. We fight just as hard for all of them and try to move the entire medical community forward to find help for all of us. People should be able to choose whatever treatment works best for them and they should be able to afford that treatment. As simple as that sounds, there are many barriers that we need to tear down. Peace out~ Hope everyone has a great 2019 Bob
    6 points
  48. The thing is Mr. Shevel, the published studies that you are talking about include a total of one on cluster headaches and that study has a fail rate of 20%. That's IF you actually got relief for these people by your surgery and it's not, to use your own words-- "In the treatment of CH, the possibility must always be borne in mind that the cluster stopped spontaneously, not because of the intervention, but because of the natural progression of the disease." (or because you gave them the right drugs for anesthesia which knocked them out of cycle, just like many of the meds that we use for clusterbusting) The 80% success rate in this story gets a lot of press from you and your business, but very little attention gets paid to the failures. What are their stories like? Because on this site we have heard from more than one of them and the stories have been pretty horrific. In case Mr. Shevel has not taken the time to read through the rest of this post here are the reports- "August 29, 2015 My niece went back to JoBerg and stayed there for three weeks. During that time she had 3 procedures done but unfortunately it didnt work. When she arrived home in Australia she was worse than ever and it has been devastating. " "My sister went twice as she really believes Mr Shevel could cure her. Both times her wounds got badly infected and the cuts in front of her ears looks horrible as the stitches were not done properly." "I have been through 2 operations, and sadly my headaches is not even 1% better. As a matter of fact, where he has cut hurts tremendously. AND I AM R70 000 South African Rand poorer. He promised me he would make it better. > My husband took out a second mortgage on our home. I have also found out that he has lied to me. My jaw could not open after the first operation, and he said he never had this problem... Just to find out someone else on this forum had the same problem. I went to the headache clinic specifically asking them to help me with medication overuse headaches, and they just wanted to operate. I was already taken morphine on a regular basis, I WAS DESPERATE. I THINK THE HEADACHE CLINIC IS THE LAST PLACE TO VISIT IN SOUTH AFRICA IF YOU ARE SUFFERING FROM CH. IN my opinion they are money hungry sharks, which thrive on the desperate and vulnerable." After every operation, I got infection. They do not sterilize where they cut, that's why infection happens so frequently. I know they do not sterilize, because the tears on my cheeks where clearly visible through my make-up. The day when they did the tests I have given them a list of all the meds and ASKED HIM ON SEVERAL OCCASIONS.... WHAT ABOUT THE DETOX. Seriously, if I asked him 5 times, I am not joking. Every time, he told me that so how, after the operations, there IS ZERO DETOX effects. I had the WORST DETOX in Desember after the first operation. Sad, since, my original reason I went there was for them to PLEASE get me off of all the meds!!!! For goodness sake, as a clinic specializing in headaches, the effect of rebound headaches should be so clear!!! Again, they are money hungry sharks!!!" Even if you get relief from your clusters, if your clinic is so messed up that you die of a sepsis infection because your wounds weren't treated right who cares? Or how about some really great facial scarring with a side of bankruptcy and still have no relief from your clusters? It's true that it is hard as hell to find a doctor that knows what they are talking about and when it comes to cluster headache there really is only one way to prove that you are actually basing your actions on facts, not opinions. That's to pass the exam the United Council for Neurological Sub specialties has for headache medicine. https://www.ucns.org/ McGeeney has passed this, have you? When you say "If anyone is misguided, according to the medical literature, then it is Boston Headache Doc. Most “headache gurus” have very little real knowledge of the origins of cluster pain. They offer opinions with emotive phrases to scare patients and when in fact they are dooming them to a life of misery when help is actually available and scientifically substantiated." I would say you have this quite backwords. McGeeney has proven time and time again to all of us here on this site that he has real answers that can and have helped us. He's proven he knows what he is talking about and he has done all of this essentially for free, never once trying to make a buck off of anyone. I am pretty sure he has not actually left anyone without the option of eating solid food anymore either, which I am pretty sure is something you can not say. The only thing that you have proven is that you are willing to disparage people you know nothing about in order to save face from the mutilations and pain that you have caused in your effort to fill your bank account. Final note--On this board it is generally frowned upon when people try to sell things to other members. Especially when the price tag is around $50,000 and the only thing you are likely to get out of it is the knowledge that sometimes things actually can get worse than just having clusters. By the way, thanks! I'm giving a conference talk at the biggest psychedelics conference this world has ever seen in about a week and I was looking for some more material for my talk. The rogue "Dr's" that are out there trying to make big bucks off of desperate people by the old slice and dice will make for a good attention getter. -Ricardo
    6 points
  49. Histamine Restricted Diet "the list" Allowed/Restricted Foods This diet excludes all: foods with naturally high levels of histamine fermented food artificial food coloring, especially tartrazine Benzoates including food sources of benzoates, benzoic acid and sodium benzoate Butylated hydroxyanisole (BHA) and butylated hydoxytoluene (BHT) Milk and Dairy Foods Allowed Plain milk Ricotta cheese Foods Restricted All prepared dairy products made with restricted ingredients All cheese All yogurt Buttermilk Breads and Cereals Foods Allowed All plain grains Plain oats and oatmeal Plain cream of wheat Puffed rice and wheat Foods Restricted Anise Artificial colors Artificial flavors Bleached flour Cheese Chocolate Cinnamon Cloves Cocoa Margarine Preservatives Restricted fruits Some jams, jellies Any food made with or cooked in oils with hydrolyzed lecithin, BHA, BHT Commercial pie, pastry, and fillings Baking mixes Dry dessert mixes Vegetables Foods Allowed All pure fresh and frozen vegetables and juices except those listed Foods Restricted Pumpkin Sauerkraut Spinach Tomato and all tomato products All vegetables prepared with restricted ingredients Fruits Foods Allowed Fruits Apple Banana Cantaloupe (rock melon) Figs Grapefruit Grapes Honeydew Kiwi Lemon Lime Mango Pear Rhubarb Watermelon Fruit dishes made with allowed ingredients Foods Restricted Apricot Cherry Cranberry Currant Date Loganberry Nectarine Orange Papaya (pawpaw) Peach Pineapple Prunes Plums Raisins Raspberries Strawberries Fruit dishes, jams, juices made with restricted ingredients Meat, poultry and fish Foods Allowed All pure, freshly cooked meat or poultry Foods Restricted All fish and shellfish All processed meats All leftover cooked meats Eggs Foods Allowed All plain, cooked egg Foods Restricted All prepared with restricted ingredients Raw egg white (as in some eggnog, hollandaise sauce, milkshake) Legumes Foods Allowed All plain legumes except those listed Pure peanut butter Foods Restricted Soy beans Red beans Nuts and seeds Foods allowed All plain nuts and seedsFoods restricted All with restricted ingredients Fats and oils Foods allowed Pure butter Pure vegetable oil Homemade salad dressings with allowed ingredients Lard and meat drippings Homemade gravies Foods restricted All fats and oils with color and/or preservatives Hydrolyzed lecithin Margarine Prepared salad dressings with restricted ingredients Prepared gravies Spices and Herbs Foods allowed All fresh, frozen or dried herbs and spices except those listed Foods restricted Anise Cinnamon Cloves Curry powder Hot paprika Nutmeg Seasoning packets with restricted ingredients Foods labeled “with spices†Sweeteners Foods allowed Sugar Honey Molasses Maple syrup Corn syrup Icing sugar Pure jams, jellies, marmalades, conserves made with allowed ingredients Plain artificial sweeteners Homemade sweets with allowed ingredients Foods restricted Flavored syrups Prepared dessert fillings Prepared icings, frostings Spreads with restricted ingredients Cake decorations Confectionary Commercial candies Miscellaneous Food allowed Baking powder Baking soda Cream of tartar Plain gelatin Homemade relishes with allowed ingredients Foods restricted All chocolate and cocoa Flavored gelatin Mincemeat Prepared relishes and olives Soy sauce Miso Commercial ketchup Gherkin pickles Most commercial salad dressing Beverages Food allowed Plain milk Pure juices of allowed fruits and vegetables Plain and carbonated mineral water Coffee Alcohol: plain vodka, gin, white rum Foods restricted Flavored milks Fruit juices and cocktails made with restricted ingredients All other carbonated drinks All tea All drinks with “flavor†or “spices†Beer Wine Cider All other alcoholic beverages
    6 points
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