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  1. 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
  2. Congratulations, Bob Wold! There was never a more deserving recipient of the National Headache Foundation Advocate award.
    10 points
  3. 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
  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!
    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. 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
  8. 7 points
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. Hi! Welcome to the forum. You should be excited because life gets better with Cluster Busters.
    7 points
  15. 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
  16. If it makes any diffrence... I will say that I'm in constant amazement of the people on here. They are beyond kind and definitely the strongest people I've ever encountered in my entire life! I had no idea that there were others like me, others that could understand and respond from the same perspective and understanding of the level of pain. When I found this place and interacted with them I found a new sense of hope! I felt so alone as I've never met a fellow cluster head. I've chosen to stay because if I can help anyone in the way this site has helped me I owe at least that much..
    6 points
  17. .....hi Nick, welcome....sorry you need to be here but we can help. ...diagnosis the first step and important for eliminating other issues, and then for insurance purposes. most primary care docs know little to nothing about CH so you may have to educate yours. best to find a headache specialist if possible...note that even most neuros are little versed. ...read everything you can find here, especially starting with the banner link Rod pointed you to..... then ask away best jon
    6 points
  18. WHAT DALLAS DENNY SAID!! If there's ever been a mover and a shaker in the world of matching clusterheads up with impressive relief, it's our dedicated Clusterbusters founder Bob Wold! Today the National Headache Foundation Advocate award, tomorrow the Nobel Peace Prize.
    6 points
  19. Well got a bit of a shock today . Daughter rang from hospital bed to say,she is moving out of hospital tomorrow and moving in to this new rehab centre that has just opened up . Charity run , it's amazing place like a 4star hotel . Could be there up to 3 months , but she is determined to be out within a month . So just 1 more big step and we get are daughter home .
    6 points
  20. Oh my god just got back from visiting my daughter in hospital and she is know awake on really heavy pain killers so still groggy plus still on breathing tube at present , but slowly but surely my family and i are getting her back . This is probably 1 of the best days in my life I can't stop smiling. Gonna open a bottle of champagne to celebrate
    6 points
  21. What other medications are you taking? How else do you manage your clusters? You want to look into getting oxygen now it will change and save your life. You can abort a cluster in as little as 5 minutes with the correct setup
    6 points
  22. 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
  23. 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
  24. 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
    5 points
  25. I've got a better idea @Bejeeberwe can all go stay @BoscoPiko
    5 points
  26. Wow, that is one terrifically misinformed PCP - what a nightmare.
    5 points
  27. I'd suggest you look in this file under the heading "Treatments without O2 . . . " https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Some of the abortive strategies might help you if you need them. I would say that after caffeine/energy shots, the most effective are inhaling cold air from an air conditioning vent, or some variation of the hot water strategy (feet in it; maybe whole body in it . . . ). I'm not sure what you mean by that. If you're out of it, that's one thing. But if you feel like you can't use more than two injections in a 24-hour period, maybe you could split an injection so you're using just 2 or 3 additional mg, not the whole 6mg. https://clusterbusters.org/forums/topic/2446-extending-imitrex/
    5 points
  28. Ginger!! Tea, candy, chews, etc. Ginger is great for shadows.
    5 points
  29. ...it's a long, windy road.....but there's sun at the end Shaun.....
    5 points
  30. ...your other family is pulling for you and yours Shaun!
    5 points
  31. i am convinced that the drugs the docs pushed (verapamil, triptans) made my bouts worse. big pharma has done nothing for me except make the only drug that helps me illegal. too bad lsd wasn't profitable enough for sandoz. it sucks but such is life. about 10 years ago i decided to stop all medication preventative and abortive. i stick to O2, Red Bull, D3 and Psychs. So far i'm managing this godforsaken disease better myself than all the highly educated neurologists i have been to. i am not disregarding medicine and science, it's just that in this case science hasn't done shit for me. i don't expect huge changes either. even with bigger groups of sufferers (migraine) medicine is fishing in murky waters and throwing everything but the kitchen sink aht the patients...
    5 points
  32. ....need.new.doc... ...preferably a HA specialist, at worst a open minded pcp who will respond positively to your needs (knowledge of which you may have to supply). nearly every clusterhead knows far more re CH than most docs, including neuros, will ever know. most doctors now have neither the time nor desire to become a student of CH for you, its a rare condition. you are the advocate....
    5 points
  33. It's been years since I've posted in the forum but something made me look today and I saw this old thread. I and my wife for the shot way back in August of 2017. This was just a couple months after the good doctor passed away. We got the shot from his friend and fellow doctor, (can't remember his name to save my life) and that was weird. This doctor is primarily a pediatric doctor. Picture to adults in their late 50s sitting in a pediatrics's waiting room!!! Anyway, I got the shot for my CCH and my wife got it for her fibro and arthritis. We both felt immediate relief and that relief went on for about four months for both of us. We were told that the shot wouldn't do much for the wife's bone on bone pain and it really didn't. but for the joints that weren't that bad, it REALLY helped. I went completely pain free for about four months and then the shadows slowly started coming back along with full on CH attacks. The only side effect either of us saw was that I had pretty bad thrush for a couple weeks with is typical for any large dose of any steroid, so no biggie really. Sadly for us, having to go to OKC just wasn't a realistic option. We spent 52 hours on the road, 27 of that driving. With the two $300 shots, we were about a grand down. To do that three times a year just wasn't doable. Since then we've discovered the beauty that is vitamin M and not we're both doing that and it's been going great for just over two years at this point. All I can say is find what works and exploit the HELL out of that, regardless of the risk. It's your life.
    5 points
  34. You really should go back to your doctor and ask for the oxygen .I promise you it will become your best friend !!!!!!!! I love seeing my tanks of o2 in my house it gives me great comfort to know they are their What Shaun said is just what I was thinking (I notice that my thinking apparently contains a lot of typos!) You can't run away from having it, but when you face it, you can do wise things to make it a whole lot less bad. You clearly are searching for those things, as everyone here is, and coming up with some interesting discoveries. But it's hard for me to see a reason why you wouldn't go for the D3 regimen full-bore, give busting a try, get oxygen, and maybe even give the new CGRP medications a shot (among other things).
    5 points
  35. Today commemorates Albert Hoffman’s first experience with LSD, a substance he synthesized years before but dismissed as not interesting. Years after creating LSD25 he brought it off the shelf for a second look. After an unintended exposure on his skin the molecule entered his system and took effect while riding his bicycle home. In an attempt to understand what happened to him, self experimentation followed setting the stage for a generational shift. LSD has a presence in many of the modern ages most notable achievements in social policy, science and art. It fueled a cultural shift during the Summer of Love. That launching pad now supports a new revolution in care.
    5 points
  36. ....i can dig it!
    5 points
  37. Yeah absolutely. So I got prescribed the device by my neurology. I didn't have to pay anything and have had three top ups so far. You get a 93day card with the device and it will run for the 93 days and then stop working. I just email my neurologists secretary and she sends a prescription form to GammaCore and they send out another 93 day card and lubricant. I haven't had to pay anything for this which is something I'm grateful for. So you can use it in two ways - as an abortive (3 x two-minute stims, 3 minute wait and then 3 x two minute stims) and as a preventative (3 x two-minute stims in the morning and 3 x two-minute stims in the evening). I was mainly using it as a preventative and I think it might have reduced the intensity or attacks but didn't get rid of them. There was some residual nerve pain / sensations afterwards for about 5-10 mins I guess I could liken to shadows in intensity but running up the nerve in the neck and head. It's difficult to say how benificial it was as it's something I'm still experimenting with. In terms of using it as an abortive I stopped using it for nocturnal attacks as they were always so well developed and I found it didn't really help with the pain and if anything agitated them more so. I use as an abortive for some attacks I get during times I'm awake and again although it doesn't get rid of them I almost got the sensation that it was spreading the pain out over a larger area and so it almost didn't hurt as much as the pain was spread over a larger area and so hurt less even thought the pain didn't really dope. I hope that made sense but I always find my CH feels like a nuclear bomb has gone off inside a single cell. In summary I'd say I'm sceptical about it's effectiveness but it's definitely something I'm gonna continue with as I really haven't used it enough so say either way. I hope that helps, let me know if you want to know anything else.
    5 points
  38. Annett, triptans are both a blessing and a curse, they work great but cause rebound headaches. I would suggest trying to figure out something else to controll the headaches and only use triptans for emergencies. I know this is easier said than done, I have been suffering with these for the last 40 plus years.
    5 points
  39. After 23 years of CH the only thing I know at this point is that it's over if I can make it to the third day PF. Never had more than about 48 hours between hits.
    5 points
  40. Hey Spiny, When I logged back in, I was overwhelmed with the response!! The amount of support and information that has been provided is tremendous and I'm grateful to have found this community! I'm looking forward to sharing information and, hopefully, becoming a contributing member to this topic. Charles
    5 points
  41. ...or BOTH. 23 yrs of clockwork regularity here, cycles and hit times...then cycles and hits became (thankfully) less and generally erratic for years more. my personal belief, backed by nary a whit of scientific support so wild-ass speculation, that the "aging out" of CH that every one of us has been "promised" (and some achieve) may be due to aging changes in our circadian rhythms...or, more likely, the CONTROLLER of same...the hypothalamus.
    5 points
  42. Merry Christmas to all hope you have a great one!
    5 points
  43. I'm sure I should know this, but what video are you referring to? (I've been here 11 years, and I admit that I haven't kept up outside this forum, even with things at this site.) As others have already said, there's a lot of possible help here, and if you feel like it, you might tell us how you are treating your CH now. It's possible if you skim through this file, it might have something new for you. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
    5 points
  44. Completely respecting your reluctance, and I feel like you're not a person to be led somewhere you don't want to go. So just FYI . . . There is often a misunderstanding that a "trip" is part of the treatment. It isn't. It's just a side effect, and as Jeebs said somewhere in a thread like this one, RC seeds at therapeutic doses are virtually guaranteed to have zero psychedelic effects. It is completely legal to buy and possess them in California. Preparation is extremely simple. Consuming them is unlawful. You can start at a very low dose. There was a time when RC seeds were considered a better busting agent than MM, but MM gets all the media attention, and many people here seem to think it and L are the big hammers. Seeds still might be considered better than MM (because their structure is closer to LSD). This is the original post on the topic: https://clusterbusters.org/forums/topic/684-5-lsa-seeds-of-the-vine/?tab=comments#comment-8326 This covers a lot of bases: https://clusterbusters.org/forums/topic/2353-moxiegirls-seed-recipe/?tab=comments#comment-29101 Blah blah blah here: https://clusterbusters.org/forums/topic/6816-number-of-rc-seeds-to-take-some-thoughts/ There are some small contradictions among these files, but if you start a thread in one of the protected boards I'm sure those can be ironed out.
    5 points
  45. For us chronics, at least me. I know the hits are coming numerous times a day. Often kipp 9-10s, so I see it like this. Plane, train, home all good same sht. There is no stopping them some times. But anything except the dentist while they are doing oral surgery. That was the worst. Take some trex and hope for the best. In the last 5 years I flew 5 times. Only once did I get a CH and I took a trex (that was when I relied on them). Now I don’t fly with anything except ketamine if I have it. That would be a great abort on the plane. People it’s not reported much but oral and nasal ketamine will abort CHs!!! If you get fewer attacks your less likely to build a tolerance. If you are worried about disorientation or other side effects the oral (troches) are much less intoxicating when you are a newbie. Takes a bit longer to kick in but what a life saver for me in the past. Having both is my goal.
    5 points
  46. I remember getting a cluster flying to South America. I asked for ice and the flight attendant brought me a nice big bag of it and that did the trick. How about taking some energy shots with you?
    5 points
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