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  1. 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
  2. You couldn't blame it Shaun! This housing needs all new wiring and what not, as the short circuits are bound to start a fire...Gosh wishing to be Kerrie is awful, But...
    4 points
  3. Some notes that might be pertinent to some of this discussion. The predictable recurrence of CH cycles seems to have been greatly exaggerated. In Rozen's 2010 study, "Cluster Headache in the United States," of 1134 people with CH, he reported, "In 41% of the survey responders, their cycles varied during the year, and there was no particular month the cycles would always begin." In that same study, 22% reported having just one attack per day. Regarding the effects of light, there was this interesting thread here a while back about glasses preventing CH: https://clusterbusters.org/forums/topic/8739-glasses-to-treat-ch/?tab=comments#comment-78836 In that same Rozen study, 6% of people reported having a father with CH. Hereditary data are all over the place, but overall, the chances that your daughter will have hereditary CH are very low. A JAMA 2020 report said "Across the 22 large cohort studies, the positive family history rate of cluster headache varied between 0% and 22%, with a median of 8.2%. The largest 5 studies had a positive family history in 18.0% (numerator not provided), 5.1% (40 of 785 cases), 10.0% (numerator not provided), 2.0% (12 of 609 cases), and 11.2% (56 of 500 cases), respectively. https://jamanetwork.com/journals/jamaneurology/article-abstract/2764341#:~:text=Meaning Per this systematic review,as well as environmental factors. [Note that this is family history, which could be anyone in the family. If you limit it to fathers, the percentages are much lower.] Since I have a daughter with CH (but -- for those who don't know -- do not have CH myself), I understand your dread, and I think Bosco' was right about the advantage she would have from your knowledge, in the very unlikely event that she does develop CH.
    4 points
  4. Pant-less is fine for critters and Pooh, but not Buzz!!! CHF, I have found that the caffeine pill seems to work better - make me feel that it is working better/faster, if I down something cold to swallow it. Likely all in my head, no pun intended, but it makes me happier and I think that affects my head in a positive way. Just a bit to pass on if/when you want to. The absolute fastest is to dump in the powder sans capsule and chase it with cold liquid. It's bitter, so I am chugging!!
    3 points
  5. My clusters started at 18 before I started smoking! First started smoking around 21..quit multiple times in between hoping it'll end the CH, but still kept getting cycles. Infact after quitting, I usually pick up smoking again as result of the anxiety and trauma caused due to the attacks. Smoking somehow just helps deal with it (purely psychological i'm guessing, but I guess it acts a crutch to deal with the trauma). But glad it worked for you!!
    3 points
  6. I must have become desensitized to that through all the years of exposure to scandalously pants-less cartoon characters:
    3 points
  7. Yes indeedy @Shaun brearley - one of those maintenance busts to kill off shadows-threatening-to-become-something-more serious. Working 100% so far.
    3 points
  8. @BoscoPiko you've outdone yourself with that meme - I came across it last night when I was still at the tail end of a bust, and wasn't sure if that was influencing my perception of it being toweringly magnificent, but it still holds its power this morning. Saw the original version of Carrie way back in the day. She did get pretty burning mad herself.
    3 points
  9. You do you. Bold experimentation got many people at this site to the better place where they are now, so no one is going to deny your privilege to do the same. If you reach the grail and share it, we all will benefit. But I'd be careful about putting too much stock in the quotes you provide here, since they are from a study of people who don't absorb vitamin D or absorb it very poorly -- "patients with malabsorption syndromes" as the article's title says. So it stands to reason that they can cite the research you mention showing malabsorption in these patients, but it doesn't say anything at all about people with normal absorption. One reason I looked at the study is that the quotes you provide so are contradictory to what has been observed time and again with the D3 regimen, where D levels go up significantly as people take more D3 (and not D2, which is the stated product in one of the quotes). The "minimal erythemal dose" mentioned in one quote means "the minimum amount of x-rays or other form of radiation sufficient to produce redness of the skin after application, regarded as the dose that is safe to give at one time." You would have to create a whole lot of redness, or mild sunburn, all over your body day after day, to get to a substantial daily dose of D. The increases reported in this study from using the sunlamps for eight weeks might be beneficial to the patients in the study, but they are trivial in relationship to getting D to a level where it makes a difference for CH. Plus, it appears that the tanning machine (not cost-free) couldn't sustain increases. Maybe the first quote, about sunlight, is accurate. But there have been many people here who have believed that their pattern of daily activities, from working outside to a lot of daily outdoor recreation or gardening, would have given them a satisfactory D level -- and were surprised to find out that they were at or below even the minimum level, let alone the substantially higher level needed to combat CH. I don't know what they are considering the "daily body requirements" in that quote, but the level of D required to combat CH is substantially higher than what medicine considers to be the "daily body requirements." Like I say, bless you in your search for a "non-invasive & cost-free preventative." Something is working for you now, which is great, and who knows what you might discover.
    3 points
  10. 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
    3 points
  11. I hope she dosen't either but if fate is not kind, atleast she has you as a guide. It's a terrible thing to have to worry about @xBoss so for that I sympathize and send prayers. I've never met anyone in person that had CH let alone anyone that knew what it was so i would imagine it would be comforting to have someone in the know..
    3 points
  12. Monica, I'm story #3 in that booklet, so my situation is different, and I'm probably not material for what you are thinking of writing. I wish you the best with it.
    3 points
  13. An old one, but Testosterone injections have actually helped some CHers. Also the top dog for ED I think. That is actually a guess. But getting the T and Free T up to 'standard' levels was a big help for some a while back. It is an injection, so trip to the doc or do it yourself deal. Not bad to get the shot from what I have been told, but a nuisance to go to the docs for it every two weeks or once a month. But, hey ,if it helps, GO FOR IT!!! ATB!!!!
    2 points
  14. All I know is some CHer dudes report viagra and cialis will trigger a cycle if used, while some episodics say they don't have an issue with them when out of cycle. Similar to CHer reports about epinephrine, though it is a vasoconsrictor. The discussion left off on a hopeful note regarding trimix over at the related topic "Warning to the guys out there", which I will admit the entirety of any discussion I've seen.
    2 points
  15. This one is a new conundrum for me as I did not know that ED meds could be a trigger but now I do so thanks for that tid bit. It seems that even natural supplements do the same as far as expanding the blood vessels to allow a higher flow of blood to the um member. I have read about sex in itself being a trigger for some men so if your guy is looking for something to push through even if being hit well .. heck good on him! I guess if you don't think he needs it then maybe try convincing him of that or give some of the natural supplements a try? When I did a quick search it returned something called "him" and quite a few others that I'm sure you already read about. Not much help here but didn't want to leave you hanging..
    2 points
  16. Thought this might interest those of ya that incorporate energy shots with O2 to abort.....a good clusterhead buddy came for a visit this weekend and told me about these.....called Pure Kick and available here in okieland at Dollar General, 6 pkts for a buck!!! Charles just mixes one in a bathroom sized Dixie cup and keeps it in the fridge....tosses it, hits the O2, aborts, and mixes another shot before he goes back to bed and sez they work just as well as the 99 cent shots that DG carries! DD
    2 points
  17. They are 200mg of caffeine. I likely have only mentioned it a few times. Most sheer away from downing the powder. But, like a BC powder, it does hit faster. I still do V8 Energy or iced coffee a lot too. But in a hurry and behind the 8 ball, this method works very quickly for me. Keeping some pills with me at all times is a plus too. Tiny and I can take them both ways.
    2 points
  18. 6 pkts for a buck? Man that is a whole new world of cheapness - the brilliant Charles is to be commended.
    2 points
  19. That is quite lovely Bosco!! Add a bunch of LED plant lights and a big fan and you are ready to grow!! That is also an amazing price for a great carpenter too!!!
    2 points
  20. S--t my vitamin L must be something else my open eye visuals are
    2 points
  21. They just need to add a feature that let's them record what your minds eye is seeing.....hell, I want a recording of my open eye visuals as well!!! Be cool to be able to watch in VR on occulus without the bodyload of an actual journey!!
    2 points
  22. Oh come on now you 2! People are gonna start thinking us to be very non-serious
    2 points
  23. OMG that was freaking hilarious! You never know though... beast toot imaging could prove scientifically helpful in the realm of beast digestion dislikes
    2 points
  24. Thoroughly brilliant brainstorm there @Shaun brearley - imagine the scientific insights that could be gained from (speaking of brainstorms) what would be seen during one of those puffs of air feelings in the forehead sometimes referred to as....ahem......beast farts......
    2 points
  25. @Shaun brearleyI'd go for it but can't be held responsible for what sort of imaging shows up
    2 points
  26. @BejeeberI think we should just strap 1 on Bosco just for the hell of it even without her busting
    2 points
  27. We are so excited to return to an in-person event this year. Please join us September 15-18, 2022 in Rosemont, IL for a great conference. See our event site for details! https://17thclusterbustersconf.planningpod.com/
    2 points
  28. @BoscoPikothat's it new name from today Bosco (AKA Drew)
    2 points
  29. Watched 'Firestarter' yesterday Bosco. That kid should be blond and named Barrymore!!! I know, there is a new one coming out.
    2 points
  30. I'll back @BoscoPiko up on that!!! There were some things said in a post that could be taken as offensive (they were taken that way by me, and my personal bonnet was becoming uncomfortable for a sec there), but the original poster kindly and voluntarily edited them out, so I feel like we're all good now, family back in harmony.
    2 points
  31. Gosh dang it if that's not a fair description of the feeling lol!!
    2 points
  32. The beast farting inside your head . Just a thought
    2 points
  33. I reckon it's your brain trying to escape Bosco.
    2 points
  34. Don't see the problem with it myself Music. If it bring more awareness to are condition I'm all for it !!!!!!
    2 points
  35. There are some rules, not necessarily theories, I hear passed around with CH that I don't agree with. 1) Smoking: Listen, if this were the 90s, the Eastern Shore of VA, $10 carton days (when I was coming up) it would be dim lights, thick smoke, and loud music in this bitch. I'd be smoking like a choo-choo. There appears to be an alarming correlation between those with CH and former smoking habits. That stated, it never triggered (my) CH. If it does not cause your CH, who cares, smoke. Your gonna die at some point. 2) Drinking: This one is difficult. For some reason, beer causes massive headaches, but with moonshine I am okay. I make moonshine and drink accordingly. For some, it is wine or those wine benders. I seldom drink, the majority of the time I use the liquor as a trading offer for something else. Bottom line, I do say with alcohol to tread lightly and stay away if getting hit. I'm neither chronic nor episodic, and I don't know how to explain my headaches either, in my circumstances I wing it. 3) Sex: There can't be a God if you get your rocks off and have a massive migraine and/or CH. Honey, that ain't natural. I get myself in trouble here all the time, if that shit happens, we all have needs, and even at 90, that is why there is Viagra-I rest my case. Get some Narcs, and abort with opioid analgesics. I'm sorry that ain't right, and it's cruel. If in a drought, there is the champagne room and sites like Backpage. And since I dug this hole, I don't see why women even date men, as hot as women are. Lord have mercy, especially when hot to trot. 4) Drugs: Party on man. Again, I get in trouble, but if you can control it and it is not a trigger-go for it. Uppers, downers, and turnarounds put me in an 8-year intractable cycle of hell. Unlike most, however, I'm all for the coke and whiskey, fast women parties, and am not afraid to put that out there. The problem is that for most, most drugs appear to put you in a cycle you can't get out of. Getting off of Barbs, Benzos, Uppers, Downers took 1 year of shakes, convulsions, seizures, a few near-death experiences, and a grand mal seizure. And, I now have Tardive. Your choice. I'd do it all over again. What a fucking rush. Talk about kickstarting my heart, I made Ozzy Osbourne and Motley Crew Habits look like choir boys. 5) Abortive Medications: Oh hell no. Go ahead foment wicked rebound headaches. It's your choice, but I had every headache specialist admit off the record that you are best to avoid them. If Oxygen does not work, as in my case, I feel for you. Prophylaxis is paramount. Again, it's your choice, but that Fioricet at 180 counts, and banging 3 DHE a day does more harm than good. Oh, and shooting up Keterolac 1 or 2x per day. I don't know, I admit to being on the outer fringes but, everything is case-by-case. The intention of this was don't live your life around CH: live your life and adapt to the bullshit that CH brings with it. It is not easy. I am convinced that you can determine your triggers, mitigate them, and then find prophylaxis. It's not easy, may take years, several doctors or nurse practitioners, even functional medicine. Most importantly, you need to be your doctor first: read, research, and find what works for you. I don't think anything can be categorized or programmatic at times. Everything is subjective to the situation at hand, and the person experiencing the headaches. Good luck.
    2 points
  36. Hi Monica, I must say I'm somewhat inspired by your post, because tonight I took it upon myself to help myself, with the wider goal of helping the whole cluster community. It can be stressful to convey our pain to people, but awareness is hard to raise otherwise! Projects like this can be cathartic, but also could literally save lives, so it's a win win situation! *I've always wanted to be a filmmaker, but since my diagnosis in March 2020 I've felt this is no longer possible. However, tonight I also learned that sadly, the actor Daniel Radcliffe also has suffered with CH's for many years, and maybe it's a pipe dream but at least I'll have someone to send my screenplay to if I ever write one! (Fantasies are healthy, as they give you hope!) Best wishes and thank you for your post, David, London, England
    2 points
  37. Bosco, try that pic today and see if it will post. The file size is hopefully fixed now. Our last frost date is May 15th, so all that we have planted to date is potatoes, onions, snow peas, English peas, carrots, lettuce, radishes, beets and greens. The basement is full of starts in trays waiting for the 15 of May. So, the corn, beans, and other stuff waits. We have two big gardens. One 50' x 40' is my kitchen garden out back, one is 100' x 80' that is across the road in our lower pasture. Plus my raised bed for salads. We hope to have it all planted by June first. As does every farmer, we pray for 'good' weather at all times just to get it in!!! Your set-up is lovely. A green house is great for keeping bugs away from your veggies, along with the dang deer!! And you are safe from unsavory weather too! Color me jealous. Our winds are pretty strong, so a greenhouse is not on the list currently. In addition, the cost of the new 'Ag. Well' ate up most of the 'improvement' funds for the year!! Jeebs, you are right. We grow all veggies that we eat here. Currently more than we can eat!!!! The kids have all moved away.
    2 points
  38. "You look alright" "Have you tried my Chiropractor " "Well, we can't pay for everyone can we. What?, everyone that gets a headache gets a candy" "I really don't know what you're complaining about " "It can't be that bad. Live a little." "Have you tried thinking it away. My cousin/Nephew/......" "You know God loves you." "It's the virus. We all feel the same way. "
    1 point
  39. Hello I am currently writing a book about Cluster Headaches. I started writing it while in this latest cluster period. I have run away from this part of my life for so long, now I feel like the only way to find peace with it is to document it. I am sending this out to the ClusterBuster community to ask you if you would like to share your story? I would love to have a book that not only shares my journey but many others too, so that for those of us that find this forum difficult to navigate through, they can open a book and find a connection to others as well as our personal remedies and routines that can aide in the readers journey. Not only would I like this book to speak to sufferers, but our caregivers and friends and family that want a better understanding of where we come from. So please, if you are interested, I would love to connect with you. Thank you, Monica Paisner
    1 point
  40. Wow that sounds awesome Spiny! I wish I could do corn but it is more of an outdoor garden thing (space wise). That's so cool that you plant all the veggies your family eats shoot with prices the way they are it's almost necessary but aside from that part I just enjoy tinkering around with the plants. I'll try and post the pick again when I get to work.
    1 point
  41. Here is what I have ready for the greenhouse so far. Cucumbers, celery, jalapeno peppers, ancho peppers, serrano peppers, bell peppers, brussel sprouts, broccoli, zucchini, tomatillos, strawberry's, tomatoes, egg plant, onions and cucamelon. I'm sure I'm leaving out some things. I cant attach the greenhouse location in this one because of file size. Will have to post separately.
    1 point
  42. Monica, this booklet doesn't do all of the valuable things you are aiming to do, but it does have brief Living with CH - 8.5x11 - 9-15-14.docxpersonal accounts from people with CH. This was created more as a way of educating family/friends/co-workers/etc. about CH than telling people with CH what they already know. (I didn't think the link was going to get pasted right in the middle of that sentence, but it seems to work.)
    1 point
  43. I don’t remember who it was that told me about drinking energy drinks during my last cycle back in October but I want to say “THANK YOU”! I was skeptical of drinking a monster energy drink or red bull during an attack but after trying it and then getting on the O2 it was a game changer for me. 5-10 minutes and headache aborted. For anyone that hasn’t tried this I’d suggest giving it a try to see if it works for you. you may just be as surprised as I was
    1 point
  44. I am convinced without the dark humor gallows humor, laughing at the beast in any way, we lose one of our greatest tools to go on. Now as to the Finest of British food and drink, there was a store here, I cannot recall the name but it was a decent sized store chain that specialized in British food and other snacks from the UK my Grandma loved. Have to say, since she was a warbride from England and my mom was born there, coming over on a ship before the war was over, I picked up a taste for much of it. Also, cats all the way, hence my name, my Devon is one of the only things that can reach me in the middle of a 10, can bring a smile despite the pain. So, hold on to any and everything that brings light and humor into your world. Sorry for going a bit deep. Also, maybe if I switched my avi, I might get a better score?
    1 point
  45. You can be a hot dog!
    1 point
  46. But I'm a dog lover . Can I be a cool dog pleeease
    1 point
  47. Just my usual note that, contrary to what one might think, a small energy shot such as 5-Hour Energy has twice as much caffeine as a standard Red Bull or Monster -- and is a lot easier to get down fast. Also, as has been noted, coffee does the job for many, and some find benefit from taking a taurine pill along with the coffee. Finally, any caffeinated drink seems to work better if you have been off of caffeine for a while (e.g., before your cycle starts).
    1 point
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