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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. 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.
    7 points
  3. 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
    7 points
  4. 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
  5. 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
  6. 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
  7. 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
  8. I have LITTLE, beady eyes officially classified as blue, but what I would describe as something more like grey/blue - they never were close to being in the Bradley Cooper / Paul Newman class, which come to think of it must explain why Hollywood agents have failed to pursue me all these years.
    5 points
  9. ...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
  10. Hi Charles sorry to hear about your cycle starting up buddy , I'm afraid it's the same story for all of us who are episodic my friend . As Xboss has said get a journal started it will give you a bit more of an understanding of it . Some of us who are episodic can name the date that are cycles will start same can't it's just the nature of the beast I'm afraid. I'm normally every 2 years but this year I jumped back in to cycle after only 4 month remission , so as I said the beast will do as it wants . Have you been prescribed o2 by your neurologist? Have you been prescribed a preventative such as varapamil ? Can you give us a bit more information buddy . Their are so many great people on this forum that can help you out my friend we are all here to help . The first thing I would advise is getting on to the D3 ragime it's a multi vitamin ragime put together by a great guy on here goes by the name of batch aka xxx . People on here have managed to become pain free for years just by following his D3 ragime. If you don't get pain free it will reduce the frequency and pain levels so it really is worth getting on straight away . If you go to search bar at the top of the page and type in D3 it will give you a run down of vitamins needed and loading instructions . I'm sure 1 of the experts on here ie Bej , spiny, CHF of xxx himself will read this and add some more advice plus put the D3 instructions on here for you as I'm a but useless when it comes to that sort of thing
    5 points
  11. Yep, just when you have this tricky beast and it's timings all figured out - beware, it can, and so often will, throw a completely unexpected curveball at you, even after 20, 30 or more years of entirely reliable, predictable precision timing accuracy. This'll go for cycle timing, time of day/night when hits can be expected, and other stuff not related to timing, like one of the biggest shockers I've learned of - switching to the other side of your head (!!!).
    5 points
  12. You guys on this site do ONE thing absolutely right. You try to stop the suicides. So far? I have to say thats a great accomplishement. To not become inured to others suffering? You deserve - all of you on here - a pat on the back. Not simple or easy during these days... thank you. Thanx to all of you for your kindnesses.
    5 points
  13. Merry Christmas to all hope you have a great one!
    5 points
  14. ...old ch.com JOKE..."wimmins don't get CH"...it's kinda funny in a morbid way, when talking about clueless medicos quotes...
    4 points
  15. Remissions are pretty normal for us episodics. I recently skipped two years and then it came back strong and lasted nearly six months. There is really no baseline, CH can vary widely from person to person or year to year. Cycles will vary as well, you can start out slow then they pick up and you are getting hit seven times a day for an hour plus per hit. Mine usually start slow then ramp up and then go down during the whole cycle. Try to keep tabs on it all with a journal so you can get a better understanding of how it all plays out. GL warrior!
    4 points
  16. .....ha Jeebs, ALL so true....and when i find myself saying "only a clusterhead would understand", i end up realizing: "well, whadda bout CHf !?" and then i weasel word it. actually, i'm gonna take this as permission not to have to do that anymore....because, there is no one more eminently qualified to be a "Clusterhead" than @CHfather.... ...also, my thanks to Bob and all the other clusterheads who came together for the being of this site in the first place....and for the admins, mods, board and others who toil on or behind the scenes...and, of course, for my fellow clusterheads who make this journey through the quicksand more bearable ...THANK YOU!
    4 points
  17. Way too kind, Jeebs. Very deeply appreciated.
    4 points
  18. It’s funny how Doctors try and point to concussions and head trauma when trying to figure out either migraines or Clusters. I have had 13 concussions that I know of during my racing career. The doctors always try to connect the two. The problem is my migraines started before I got my first concussion and they have not changed in frequency, duration or intensity from the concussions.
    4 points
  19. Thanks Guys!! im stocked on the injections and will have them in my chest pocket at all times! calling around on monday about o2 tanks near my stay. side note: my nightly visitor (usually 6-8pm) has not shown. not that that means anything but... last year xmas eve was the last attack of the cycle soooooo....ya know holding on to hope wherever we can find it!!! also, after reading all day on here.... not gonna wait. waited long enough. spores are ordered. Echo the Geko (R.I.P.), i will think of you fondly as I turn your aqaurium into a terrarium for what may well save me
    4 points
  20. ...no truer words!... .....made my living as a "professional observer". one of my heroes is Yogi Berra: "you can observe a lot by watching". nuance and complexity, a twinkle or a frown, are all lost with only pixels on a screen...
    4 points
  21. I'm in the UK, within 90mins drive of the University of Essex. I suppose it's most likely that this effect won't be widely replicated amongst CH patients, but, as others have alluded to, it seems to warrant some attention. Even if it worked for must a handful of sufferers, that would be better than nothing. I would absolutely be willing to participate in any study should one be forthcoming. To be honest, I'm keen just to get my hands on some glasses now. Seems like little to lose in giving it a go.
    3 points
  22. It's got to be worth a try . It's not a drug which is should a good thing as us CHers have had enough s--t thrown inside are body's that don't seem to do Any good or if they do they gave major side effect to go with them . Just think if this works for 3 or 4 % of are community it would be a success in my eyes .
    3 points
  23. @BoscoPikoYup, agree with you on all fronts. And perhaps, a more in depth study is exactly what this very preliminary and incomplete study needs is more clusterheads to add to another study. That's really what I said to him in my email was that there is a whole community of us out there at Clusterbusters and some might be interested in being part of a bigger study to try to verify your initial findings. I think the really intriguing thing about this for me is that it's not a pharmaceutical that takes millions of dollars and all kinds of hoops and risks that could potentially take a decade to get approval. You don't need a prescription for tinted glasses. If it turns out to be shit, it turns out to be shit. No harm, no foul. But, let's err on the side of hope.........
    3 points
  24. I have reached out to the author of the article, Prof. Wilkins at the University of Essex to get more information and mentioned all of us lab rats who could be interested in trying out such a device. I'll post again if he communicates back.
    3 points
  25. Good call jeebster!! Jerry is indeed an honorary clusterhead!! DD
    3 points
  26. I can only reiterate what has been said in above quotes .This forum with you guys and girls sure have made my life all the more easier and bearable to handle THANKS A LOT
    3 points
  27. ....Trailer Park round please....
    3 points
  28. Somebody get pairs of these glasses to Jon & Shaun stat - we need SECOND and THIRD patients to try these babies out.
    3 points
  29. I say we should all chip in to fund a jumbo sized "CLUSTERHEAD!" tattoo for @CHfather at the soonest opportunity, at a deluxe tattoo parlor of his choice. (Of course the irreplaceable queen of the headbangers @spiny and many others who need no qualifications as clusterheads have long royally kicked royal arse too )
    3 points
  30. As Pebbles' says, if you get a correct diagnosis or they take their word for it that you have CH, then you could suggest something like, "Please check with Up-To-Date or Medscape or whatever service you use, which will tell you that subcutaneous sumatriptan or high-flow oxygen with a non-rebreather mask are the best acute treatments." (Of course, if you've been having an attack long enough that it's still going on after you've gone to the ER and waited to be seen, oxygen might not be very helpful.) Alternatively, you could print out and carry with you a recent article about treatment of CH, such as this one -- https://pn.bmj.com/content/19/6/521 -- or the Word doc you get from googling [goadsby "treatment of cluster headache"].
    3 points
  31. I think many are with you as far as being over the COVID bit. It is something worth discussing as the after affects on folks with cluster have varied from drawn out cycles to nothing at all. I don't think you kick started anything with your posts @Shaun brearley. Your posts were level headed and non derogatory. The issue seems to lye in personal opinion on vaxed VS. un/vaxed, masked VS. unmasked etc... Unfortunately when folks opinion's on one thing or the other vary so far and they are passionate about it all the sudden we forget to be conscious of the words we write and how they may affect others that feel different than us. For instance take the video I posted on the music thread the other night (if it was removed prior to you seeing it then you may be lucky). I did not take into account the folks that may be offended by it as I went all stupid and thought everyone thought like me... Fact is that we do not all think or feel alike, however we should be able as adults to respect difference after all is is what spices the world up and makes us question even our own thoughts. That being said I will say that I do believe that most CH heads that are following the D reg are a bit better equipped to handle almost any virus as we have primed our body with a majority of what is needed kick most yuck's with a quickness.
    3 points
  32. There is a lot of curious, conflicting, confusing and contradictory evidence out there. It’s always been the case but much more amplified and widespread as regards covid because no one is unaffected. There are so many examples of this from hydroxychloroquine to ivermectin to vitamin D to vitamin C to famotidine and on and on. There is also tons of controversy about anti virals and monoclonal antibodies. Won’t even address vaccine issues. Things are moving so fast and so much data is pouring in it becomes very difficult to vette information fairly and apply it appropriately. And then there is the rapidly changing landscape because of mutations. It is very hard to maintain a consistent treatment protocol and apply it appropriately. Then there are the resources which are taxed beyond comprehension especially in human terms. So by the time the sound bite is distilled the information reported seems confused and conflicted. And it is. I can’t thing of a time in history when so many people had access to so much information so fast in the context of an evolving situation. Then there is the interpretation of the data. For instance, if I am correct, the study sites regarding Benadryl was a report of in vitro (test tube) attachment of the virus via its spike protein to human cells. What is seen in the lab seldom translates to the real world. So while the observation may be correct what it means is a longitudinal population application is completely unknown. Of course there is professional fraud as well..an example of the seminal report of ivermectin to treat covid which was debunked and withdrawn. Normally this process occurs within a small group of researchers with an interest in a topic. Everyone is interested in covid so it’s amplifies the big mess of info we are fed. On an individual level each person must do a risk benefit analysis and make a decision for themselves. It’s probably prudent to listen to what the mainstream, practicing providers suggest but if you choose to augment with other interventions and are not causing yourself harm why not? Things like masks and vaccines are a bit more controversial because the point of their use is to prevent others from being infected. It’s far from 100% as a strategy but its the best offer we have. Members of a society should work together to protect each other and support a common interest. Society has devolved a bit in the face of current events but I will remain optimistic our center will return.
    3 points
  33. "Highly annoyed" could be an understatement related to past "political" discussions here of coronavirus (but I'm not suggesting at all that Fork boy was doing anything other than asking a reasonable question. To partially answer that question -- I do know a person with CH, on the D3 regimen and using Benadryl in cycle, who contracted Covid). But just in terms of people with CH and disease, Rozen's study of 1,134 people with CH, conducted in 2008 through surveys of people here and at CH.com, had two very interesting findings. Considering that there is a strong prevalence of smoking (and often heavy smoking) among people with CH, there were only three reported cases of lung cancer among the 1,134 survey respondents (the CDC estimates that 10-20 percent of smokers develop lung cancer), and "cluster headache is associated with a low prevalence of cardiac disease as well as cerebrovascular disease, even though the majority of CH patients are chronic heavy smokers." This was long enough ago that that it's unlikely that more than a very small percentage of the respondents had been either doing the D3 regimen or using diphenhydramine. Could be just statistical anomalies, of course, but could also be that just having CH somehow provides some kind of protection against some conditions, in ways that no one really understands.
    3 points
  34. I use benedryl. I dont think, and i may be completely wrong, that we rly have a silver bullet to protect us from covid. Its a virus. Vitamins, minerals, diet, exercise - all help us to be healthy and strong. I got vaccinated.
    3 points
  35. Lol not really jon019 like I said only questioned once . Didn't have explanation ready so just came out with. I've got a brain disorder and if you don't allow me to take this medication on-board with me we could all have a major problem that we don't want at 38000 feet . They didn't ask anymore questions
    3 points
  36. ....the only question i ever got was for an oxygen regulator/mask (they do look kinda strange off the tank)....they obvioulsy didn't know what it was but i also got the feeling they wanted to know if I knew. good idea to have a short, practiced blurb of CH (incredibly painful, debilitating neurological attack that may look bad but is not life threatening, yadda yadda) at the ready for this and other similar occasions. they aint gonna fully understand but it might come in handy... i bet Shaun had a good one.
    3 points
  37. Had 2 nights w no CH this week!!! Got slammed last night but I’m grateful fir the nights w no hits!!! Going to see if a few more infusions help after the new year. I’ll keep y’all posted.
    3 points
  38. Hopefully injections/needles are allowed on flights at this time? I haven't checked on that for a while, but this is where I've found the nasal spray version of the triptan to be a nice reassuring pocket pal to have on a flight (if you have any of those laying about). I've been a straight up syringe-with-q-tip-used-as-the-plunger guy for injections for awhile though, and that pretty much screams out for excusing oneself to the lavatory, whereas I could see an auto-injector being deployed more discretely whilst still strapped into seat. If needles are allowed onboard, one more thought: Have it on your person at all times, not stored in the overhead, as that ain't gonna be accessible during times like take off/landing.
    3 points
  39. Hi Beersnuggles, I have a fear of flying for the same reasons as well as the altitude. I posted something out flying a while back and got some good feedback. Here were some of the suggestions: 5-hour energy shots caffeine tablets Imitrex prior to boarding Keep your injections handy arrange for 02 where your going And just as an afterthought I wonder if you could take a few boost cans on board ?
    3 points
  40. Hi beersnuggles sorry to hear about your recent CH cycle a lot of us are experiencing a rough time this year for some reason. I try not to travel whilst in cycle but I do carry samitriptan injections with me when ever I do travel . As for o2 I have 5 portable tanks I carry with me everywhere I go if travelling for a few days plus i take 1 large tank with me . If your flying you can arrange to get 02 dropped off at your destination through your 02 supplier before you travel . Hope this helps . Hope you and your family have a great Xmas and New Year
    3 points
  41. WHOA!!- Santa with imitrex jabs, O2, one eye afflicted, frozen veggies on the forehead, and some pills I'm not sure how to identify (D3?!). Now that's the ultimate instant classic I never anticipated seeing - he's one of us - HO HO OWWW!!
    3 points
  42. Bosco, I removed the post for political content. I did have a complaint. It was warranted.
    3 points
  43. Wow come on juss most of us on here support you buddy . I for 1 find your posts intriguing and interesting and have learnt so much from you buddy. If you don't agree with something posted on here my friend as spiny has said just skip on by buddy it's really not worth the hassle .
    3 points
  44. Baclofen is not a NSAID it is a GABA antagonist. Most commonly it is used as a muscle relaxant. It has a tendency to make people feel dopey and dysphoric. A one off report of curing something as complex as alcoholism is problematic . Most of the research in this area is inconsistent. The use and withdrawal of baclofen can have serious consequences. For our purposes there has been limited reports of baclofen use in treating cluster headaches. An optomistic report of a case series in 2001 shoed promise but no follow up seems available. Dealing with uncommon conditions like ours is problematic. In the end it would be hard to argue against proper nutrition, balanced vitamin levels and a healthy lifestyle. Easy to say, hard to execute.
    3 points
  45. ....naw, that's the other forum... .....nope, and i got proof: "jon's a smart-ass" ...yup! ....."we don't know a millionth of one percent about anything" T. Edison but if ya wanna talk about mooshies, yur in the right place ...used to volunteer for Lifelong....among other things they feed folks shunned by society. their motto: "food is medicine"...i like that, i believe that... MERRY CHRISTMAS ! Juss
    3 points
  46. Decades-Long Delays in Cluster Headache Diagnosis Common (medscape.com)
    3 points
  47. @Theresa, if this isn't overtaxing your patience . . . It seems he tried busting at least once or twice with satisfactory success. Is that accurate? And you had mentioned possibly starting the D3 regimen . . . did he do that? Is he taking other meds? I'm just trying to get a sense of the full context. BTW, I added this thread to the post on "Basic Non-Busting Information" in the CB Files section. Since it says that post has more than 2,000 views, putting the info there might increase the numbers who see it.
    3 points
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