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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.
    8 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
    8 points
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. Hi! Welcome to the forum. You should be excited because life gets better with Cluster Busters.
    7 points
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
  16. 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
  17. 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
  18. 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
  19. 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
  20. 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
  21. 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
  22. 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
  23. Hi to everyone on here I just wanted to express my thanks to everyone that kept me afloat for my last 3 month cycle. It was a hard one and longer then I've ever had to endure . I really don't quite know how to properly thank everyone. I haven't had spikes or the devil visit me in 2 and a half weeks so I dont want to jinks myself but I think and pray I will be in the clear for a bit. I believe it was @spinythat said to me life happend between the clusters and I have had a few days of life. Road my horse.. and am now at my retirement home that I haven't been able to visit in months.. a little life is worth living for!!! I want to send picks but the site keeps telling a different size so maybe later. Thank you all.
    6 points
  24. @Kimbers Welcome to the community and thanks for being an advocate for your hubby!! We love our supporters! While a prednisone taper usually does stop the hits, it's primary use is as a bridging med to allow other Frontline clusterhead meds like verapamil or lithium to build to a therapeutic level in your system....however, it doesn't abort the cycle for most folks so the hits will likely return after the taper unless he's lucky and has a very short cycle. Since he's so new there's no guessing how long his cycle will last and cycles tend to morph over the years anyway for most of us.....mine are pretty consistently around 20 weeks followed by an 18 mo remission. How else are his clusters being treated? Two primary things for ya'll to educate yourselves on and put into place are high flow O2 and the anti inflammatory vitamin D3 regimen......O2 will abort individual hits while the D3 regimen will either decrease the intensity and number of hits or it can completely abort the cycle for many, many folks! You can find files on both in the Clusterbusters Files section. Dallas Denny
    6 points
  25. 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
  26. 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
  27. 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
  28. 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
  29. '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
  30. 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
  31. 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
  32. ....i can dig it!
    5 points
  33. you are in a dire place, i think most of us have been at. that's why it's important to have an arsenal of remedies ready. like a boyscout you have to always be prepared. Your List should include: oxygen oxygen!! oxygen!!! vitamin d3 protocol+cofactors Tryptamines (LSD, MM, Seeds) IMHO both verapamil and triptans like zomig are a double edge sword. they take the edge off and mask the cluster but i swear to god those medications made my condition worse. i can not prove it but i am almost certain that that is the case. i have read numerous reports from sufferers over the years that state the same. bonus as time goes on you will have to up the verapamil, that's how the story goes. and at some point you start feeling the side effects. i felt like a zombie, with severy constipation and waterpooling in my legs, mind you i am a very active and athletic person. it was hell and not worth it. oxygen and magic mushrooms/lsd saved my life and my sanity. i am forever grateful to this board it's initiator and members. the drugs doctos perscribe are all offlabel use...make what you will of that. good luck!
    5 points
  34. Yeah, I’m episodic and mine always start off sort of low key. They usually ramp up in frequency and amplitude until I’m going full tilt, 4-6 hits a night at peak. Although I’m not as clockwork regular as some. I’ve even had a few low level hits and then not gone into cycle. Like a miss or something. But usually when I start feeling pain on my right side, I get my stuff ready to rock. Better safe than sorry. I got caught out of oxygen once when a cycle started going, thinking maybe I’d miss, and I paid the Piper. One time of that was enough, I’m not doing a repeat of that debacle. So I concur with the seasoned veterans above. Time to get your stuff sorted. Better safe than sorry, and all that.
    5 points
  35. 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
  36. 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
  37. 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
  38. Here is one of my most happy places. This was Thanksgiving day or as @Bejeeber said ThanksBirthGiving day I was having her connect up with me prior to hoping on
    5 points
  39. I find putting a frozen bag of peas on my neck while using the O2 helps. Sometimes I'll put a second bag of peas on my head. I'm sure the whole scene looks rather chic to the untrained observer
    5 points
  40. I am glad you found this site, there are great people on here that will help you out a ton. Your headaches sound a lot like mine. I have clusters and migraines which I have been told is rare, lucky me! I can not take imitrex as it makes my headaches worse, but I can take Zomig and it works wonders. Be careful there is a rabbit hole that comes with triptans that can send you into rebound headaches that will not go away unless you stop taking them and suffer through a few days. Prednisone is a life saver but you have to be careful with how long you are on it as it is bad for bones and liniments. O2 is great also if you cant get a prescription and a high flow O2 regulator rent a oxygen bottle from a welding supply and get a welding regulator.
    5 points
  41. I had horrible neck pain some years ago. Every day a misery, wearing a cervical collar all day, unable to do anything comfortably. I was in the hospital for a week just because I was going nuts from the stress. The first day I was there a doc came in and said he had looked at my MRI and he was ready to do surgery whenever I wanted (fecking ambulance chaser). Nothing they gave me, even morphine or steroids, helped at all, and when they kicked me out they gave me giant bottles of things to take daily (neurontin, oxycontin, oxyIR . . . ). I flushed them down the toilet on the third day (too bad -- street value was probably pretty high). It happened that we had a connection with a top neurosurgeon, and I counted the days until my appointment with him, thinking he surely was going to rush me into surgery and finally fix the pain. Instead, he said to come back in two months after doing physical therapy regularly. I was crushed. I wanted it over, and I was terrified of doing anything to make it worse. Turned out that waiting was the right thing to do, and I never did need that surgery (and I never miss a day of doing my neck exercises). There are those famous studies where they would look at people's spines and try to predict who was having back pain. Turned out that except in extreme cases there was no connection between spinal condition and back pain. One person could have three herniated disks and be suffering, and another person could have something that looked just the same and be having no pain. And the other way around -- no structural issues but serious pain for some and no pain for others. So maybe, like me, you were just having some kind of awful episode and it's going to get back to normal or normalish and just become a memory. Or, of course, maybe not, but it sounds like they're ready for you if surgery is what you need. Love you, Denny, and sorry you're going through this now, too.
    5 points
  42. Hi Ta, There is a plethora of info on this site specific to the D3 regimen. In the top search bar of the forum just type in D3 and be sure to follow the instructions from a user named Batch (handle XXX) there is more to making the D3 be effective than just taking the D3 (you need to take the co-factors). You never mentioned oxygen so I am unsure if you have a scrip or have tried it or not but many on here swear by it to abort. It works for me from time to time. There is a video on here that goes over the breathing techniques that seem to be effective with a non rebreather mask. I was able to get the intensity of attacks to be manageable without the triptans on the D3 reg. I so understand the frustration with folks mentioning migraine etc. I think a majority of us have gotten that response a time or 2..
    5 points
  43. ...yeah...it was a worry, but after a number of real bad hits early on....and even w/o a diagnosis...there didn't seem to be residual physical damage so i started worrying/concentrating on the mental health aspects. hard work...nothing physical to grab on to...i constantly wonder how folks maintain in the face of CH. my admiration for the perseverance of clusterheads is endlessly deep... ....what became near incomprehensible for me was "how is it even possible to SURVIVE a pain so incredible it defies description?". there were 10's (thankfully very rare) where it hurt so bad i actually forgot to breathe......yet here i am....
    5 points
  44. It's ok. I suppose I feel bad for anyone with this un-welcome resident of the brain. There are a few states that allow assisted euthanasia but I assume it's a sticky mess to have it approved and even though it has crossed my mind in moments of agony I could never do that to my husband, family and friends. As for employment with CCH that's a tough one, now days with the pandemic working from home is pretty popular and many state agencies will not be going back to the in office way of work as it is more cost effective. You sound like a very bright individual and while it may take you a bit longer to achieve your goal due to CCH you will find a niche that works for you.
    5 points
  45. What a great job you are doing, Kimbers!! And now, with so many members of the ClusterBusters all-star team joining you as they have (and maybe more to come!), and what seems like a very solid medical team (although I'm puzzled about why verap wasn't started at the same time as the pred), your husband is getting plenty of support. I have little bits and pieces of possible additional info, but it's all in this file, so I'll let you look through it: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ (I feel pretty sure that this is already clear to you, but just in case, the blue underlined things in Jeebs's posts are links to files, so just click on them. (I missed it the first couple of times, but then, I'm 100 years old.)) (Getting on O2 early in an attack is essential . . . and it is also true that sometimes first uses of O2 are not very effective for people with CH, but they become more effective quickly. In part, this seems to be some kind of natural phenomenon that affects some people more than others, and in part it's a matter of developing the most effective personalized breathing strategy and related practices, such as the caffeine/energy shots that have been mentioned.) As a supporter myself, I know what hell it can be to see someone you love suffering so severely. He's blessed to have you, and as others have said, the suffering is going to be very dramatically reduced by doing the core things he is already doing or starting to do, and perhaps adding some others, such as busting.
    5 points
  46. If anything has been missed in all the great responses you have received from these members of the starting lineup of the CB all-star team, it might be covered in here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
    5 points
  47. I live between attacks. I am chronic ch with little to no breaks...ever. been this way for 10 years. My hobbies include dabbling in psychedelic drugs and I live way off the grid on our family homestead in Montana. I am a retired professional musician and I love hanging around with my odd friends who are mostly societies rejects. I am married and have six kids. I am the ultimate mountain man stoner punk rock dude blessed with the beast. The beast is my friend cause he likes me to do shrooms to make both of us happy. I am happy just to participate in this brutal life us ch folks live. We are super heroes. Best to all. Psychedelic Brian reporting from the lp3 ranch.
    5 points
  48. Look into RC seeds (Rivera Corymbosa seeds). They can do the trick and no tripping for most. You can order them online and have them in a few days, Grind them up in a pepper mill, soak them in some spring water for about an hour then drink them down. They can work just as well as MM sometimes with less mind altering effects. You can read all about them on this site by putting RC seeds in the search bar at the top of the page. 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.
    5 points
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