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  1. 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
  2. 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
  3. ...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
  4. 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
  5. 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
  6. ...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
  7. 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
  8. This is something to hope for Jon. The other side of your post that seems scary is the erratic part. I like knowing when I'm going to hell for a stent (don't know exactly why) maybe it's because I'm a bit OCD in that way or maybe it's because I can mentally prepare? I've heard so much about aging out and I'm unsure if I can trust that (not that you are inferring as much. I don't want to give myself false hope as I am somewhat new to CH and received a diagnosis fairly quick with comparison to most (I was a tyrant thinking I would surely die from the hits). I am 42 and started having CH at 38 so as much as I would love to believe that maybe in my 50es I might go into remission I don't want to set myself up if that makes any sense? Anyhow I have been blessed by finding this site and all the amazing people on her so I take that as a win!
    3 points
  9. Me to Jono same dates for 39 years until this years extra cycle that started end of July
    3 points
  10. No problem Bosco. I hope that it helped a bit. There is so much that we don't realize or connect till years later, you know? It took knowing that pregnancy can stop a Chronic dead in its' tracks to piece the bits together many years later. I had to fight for my diagnosis with a Neuro when I got a proper cycle too! Actually had to take my husband to get the guy off of the Migraine train! It was not encouraging! But he and I get along fine now. I go once a year and get my one script filled and push him to get patients on the D3 Regimen. He will flip over the new studies using MM!!!! I can't wait!
    3 points
  11. Sorry Spiny! Thank you for responding in such depth though!!
    3 points
  12. i agree with xBoss... i am usually 3-4 years between cycles and then have 4-6 month cycles with an average of 2-4 a day for the cycle it has been that way for about 8 cycles over the last 30 years ..the first month is not too bad from a number per day but then the next 2-3 months are closer to 4 a day. follow all the instructions about oxygen and vitamin d etc that you can find on the site and realize eventually that it will end
    3 points
  13. Another 3 weeks and it seems like I get 1 migraine every 2 weeks or so. Completely CH free since I started Nurtec. I have always thought that if I could get controll of the migraines the clusters would stop. I sure hope this continues.
    3 points
  14. Its interesting that the military is a primary funder of psychedelic therapy. There are several trials underway looking at treating PTSD, moral injury and brain trauma with various psychedelics. Mechanism of action and effective protocols are still undefined but the overall success rates are not disputable. Veteran self help groups and/or healing circles are also widespread. Less is specifically known about outcomes because these groups hold thing closely and in confidence. They tend to practice a combination of talk, classic psychedelics and other psychoactive substances like toad DMT, ayahuasca. ibogaine and MDMA. Hopefully successful protocols and positive results will become the norm. One thing for sure is psychedelics have the potential to make the world a better place.
    3 points
  15. ....it wasn't a choice, but you make a good point about predictability....and overall i "preferred" that part of ECH to CCH. always interesting to hear other clusterheads opinion on THAT discussion. have gone back and forth myself about which is "betta"...horrific but predictable Episodic or lesser but erratic Chronic.... ...really it's just the same beast in different guise. ya gotta adapt and adjust the strategies learned and the tools collected...
    2 points
  16. Not sure exactly what you’re looking for, Sue’, but I assume it’s some kind of confirmed information (“What we know”) as opposed to just ”what we think.” There have been two major large interview-based studies of people with CH: Todd Rozen’s in 2008 and one by Larry Schor and others around 2018. The first two articles here are from Schor’s work. The second two are recent studies that seem applicable to your thinking. The last three are related to Rozen’s work. https://headachejournal.onlinelibrary.wiley.com/doi/full/10.1111/head.14237 [epidemiology, 2021] https://pubmed.ncbi.nlm.nih.gov/33337540/ (pain, 2021) https://journals.sagepub.com/doi/full/10.1177/03331024211018138 [diagnosis, 2021] https://www.nature.com/articles/s41598-020-59366-9 [effects, 2020] Rozen’s big study (2008): https://pubmed.ncbi.nlm.nih.gov/22077141/ (“Eye color: the predominant eye color in cluster headache patients is brown and blue, not hazel as suggested in previous descriptions. ") Spin-offs from Rozen’s big study Women: https://jnnp.bmj.com/content/70/5/613 Tobacco: https://pubmed.ncbi.nlm.nih.gov/29536529/
    2 points
  17. Wow! That's amazing... Do you recall if you were doing anything diffrent during that break? Even if you don’t that's just out right amazing but on the other hand I assume you were devastated by the return.. I suppose if I take anything away from this it would be that miracle breaks for suffering folks can happen and to be very skeptical about being cured and or about the shite show being over. Thanks for sharing this tid bit about yourself.
    2 points
  18. https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 This is the first iteration of the D3 Regimen. Batch has made some changes and additions, but this will get you started right away. I have been taking this for many years now and for the most part, after the first year, I only have a few hits per year. I do avoid stuff, like Epinephrine given by doctors and dentists and MSG in food. You have had some great responses and have a lot to chew on now. Oh, in so far as long remissions? Yes. I had one for 10 years. I thought I was cured or outgrew them. Oh, soooo wrong.
    2 points
  19. ....cuz it probably doesn't...old line migraine med with minimal effect on CH for most folks.... ...many are on D3 regimen yr round w/o consideration of CH. we are nearly universally vit D deficient. is safe but nice to know if your other measures worked w/o....can always add later...
    2 points
  20. Well I've had CBT and I've got to say it didn't work for me as I wasn't will to talk about what I did or saw whilst in the military which caused my PTSD ,I have really bad nightmares which I call horrormares , I have done for over 20 years know It caused the break up of my first marriage .I will say that since I've used vitamin L the horrormares have subsided not completely but they have calmed down . My mental health nurse has said she has noticed a difference in me and top me to carry on with what I'm doing . I did explain to her that I was using it to treat my CH , but as she said it's also helping with my PTSD
    2 points
  21. Hi, All Adroid users that want to log their attacks, medicine use, therapy sessions, vitamins or MM/LSD use and more, can download now the APP I made to log my own attacks. It is free to download in the PlayStore now. Look for: Register your Journey If you need a new button to log something that isn't listed yet, please request a button here I hope it will help you logging all you would like to remember about your attacks, medicine use and all the other things you don't want to forget. If you download the app, please rate it as well, that would help me a lot for knowing if I need to go on or stop with the development
    1 point
  22. Yea not good bej . Probably thinner than skinny oops spiny
    1 point
  23. A very few uf u kno that ive been going thru some rough times - on top of these chas. I saw doc thursdsy, and theyd snuck in a pysch person as an 'intern'... I happened to explain being extremely hypothyroid and un.tx. Bs levels tank when asleep n last thing ur body does is shoot out adrenaline so u don't die. I used to awake as id be scratching to get thru the walls. Taking thy t3 at nite stopped it. Eventually t3 + armour got me going. Then i mentioned clusterbusters - and? Wallah! The intern *knew* abt chas!!! And the nurse had heard of microdosing!! U cldve knocked me over w a feather. Ive been in a fight to keep my home, the sheriff is a constitutional sheriff? And so he'd seal alll his arrests so he cld seize properties.... i was forced to sign a blank resttraining order.... w a solid leo background? Having these shaky, at best, court things against me? Was stressful.... i was bring forced out of a doctor.'s care.. i mean most any n all doctor's care.... to travel over 120.miles to see a doc... facing losing my home, and a sheriff who things he is - i kid u not- a king who runs soc services and everything... if u dont like it? He'll bend the law and arrest u -:indefinite stay in jail is 1 luxury he imposed. The judge retired when i started bitching abt ex parte communications. The pub def got jetked out. Then 3 days after my court? The sheriff put in his retirement notice (nov 2022). Pub def #2 - i found his obit online. He died of brn cancer 2020. He grew up mesa cnty where sheriff n his buddies grew up. Is my pub def #2 dead? Its like a bad lawyer joke - but rather off color. I dont know...., but everything else @ heres gotten very rotten. Jurys out on #2. Judge #2 seems like a rather nice passive female. Quiet, didnt answer my objection to blank r.o. and didnt answer when i told her I'd fired #2 and needed a lnew awyers advice. TY for clustetbusters. And TY for "microdosing"... as i said? Then met another nurse there suffered w chas also. It was a surprise that 2 ppl were undetstanding of chas. In a sea of ignorance? U find 2 knowledgeable then a 3rd who also suffers? It takes awhile to have it hit home. Thank you to everyone for the bits and peices, large and small, that u bring here? And that u take out into the world. Thank you.
    1 point
  24. Full blown chronic for 6+ years, while I was technically chronic prior to 6 years, since I would have at the very least one a week, all the time. So the 'pain free' for x amount of time never fit. I have reduced sensation around the eye, temple, cheekbone. Not numb, just muted, my right eye is in a semi permanent droop, far more in an attack, but still noticeable between, pupil on the same side is also constricted, and less reactive to light. Now, correct me if I am wrong, also just did a quick google, but there is a relation between melatonin and vit D absorption, so maybe not the eyes specifically but overall melatonin could have an effect on vit d absorption? Higher melatonin, more vit d blocked, greater chance of CH? So, having brown eyes would show higher melatonin?
    1 point
  25. I cannot find any information saying that the iris lets light into the eye and onto the retina. My understanding is it is the pupil that controls the amount of light that enters the eye and the iris controls the pupil. The cornea refracts the light into the eye via the pupil and then it is focused on the retina. Which is why Cataracts cause blurred vision. I know that in cycle, my pupil will not properly dilate. It stays constricted to some degree. The docs always look into your eyes with their bright light back and forth, but that is only to check how they react to the light. I walked over and faced corner in the exam room and had my Neuro look at my eyes there to convince him that I do indeed get Horners with my CH. My CH pupil will not dilate in the dark when I am in cycle. Now that pupil is permanently constricted to a tiny degree. I had fought so hard to lift that eyelid, that he thought I was full of it when I told him that I did have Horners. Now blue eyes contain LESS Melatonin that brown or hazel eyes, that is fact. The highest levels of Melatonin cause brown eyes. The less Melatonin in the iris, the lighter the iris. Ergo, blue comes into play. And your DNA determines your eye color. I am all up for new facts, but I don't think that I am wrong on this bit.
    1 point
  26. Sue, I had them and wore them for ~two years. After that, I was no longer in an environment with those stupid lights. I went into remission a good 3-4 years later. The drugs that I was prescribed made drinking and all that off limits, so no, no drugs or anything for the 70's. I also had a script for Thorazine for my nocturnal hits for two years. Pretty shocking today. My doctors, at that time, felt that my headaches were caused by a concussion. They did not even think they were migraines. That diagnosis came a few years later. when I moved to another state and went to the ER. It is rather complicated actually, but that should give you enough information to work with. Then came the glasses.
    1 point
  27. @charles87sf I'm betting most of us have stories about clusters coming and going when they aren't "supposed" to. As everyone on this thread has already mentioned, it's sort of a crap shoot. You hear stories about folks getting clusters on the same day, same time, on a very specific schedule. And that certainly happens. But my guess it's also almost as common for them not to follow a strict schedule. But, you are on the best site in the world for clusters and you are hearing from folks that have more collective experience and knowledge than anywhere out there, including strictly medical sites. Don't hesitate to reach out!
    1 point
  28. Spiny? U wore pink lensed glasses for migraines in the 70s (for all thru the 70s? 10 yrs straight?)....and u then after that? (When after that?) had a 10 year remission?... pls? What were, roughly, ur dates of pink glasses and ur dates of remission? Like roughly months and yeararspls? And thanx? Did u, by chance, use drugs during the 60s-70s. also? Hallucinogenics? If this is too personal we cld go private... just trying to get a better handle on the dates and firm things up a bit more. I also had a 10 year remission - if i am correct to see the headaches on a continuum? Thanx
    1 point
  29. I read the pink glasses post a while back with interest. I wore them the '70's when I was working under fluorescent lights. They prescribed them for migraines!! They seemed to help with them for some patients. I did not notice any change in my head, but I loved them!! They did improve my moods. My eyes are green.
    1 point
  30. Well, sweetie pie? I think u r the exception that proves the rule!!
    1 point
  31. hi @Sue mcdonald...do you have a current source for #1? way back in the 80's the listed characteristics in the majority of lit i could find (hard slog) for CH patients was: male, smoker, hard drinker, leonine features, orange peel skin, ocd, several more i forget.....and hazel eyes. ...i believed it then because i happen to have hazel eyes....all the surveys since (and most clusterheads i've known thru online forums) do not support this characterization as accurate....including eye color. it never really mattered to me either way, since eye color is immutable, so would only be valuable as a tool in diagnosing (if true)... ....assuming #2 refers to vitamin D, the rest of your list looks fine...
    1 point
  32. He had.. beers?? Oksy. I'm impressed, gotta be feeling better! Mo
    1 point
  33. I'll be interested in how the continuing research shakes out regarding psilocybin and PTSD, since I've been reporting for quite awhile that I credit Vitamin M busting with pretty much entirely quashing my previous PTSD-like dread of CH, and I hope others could receive that additional benefit from their busts https://www.thehealthy.com/mental-health/magic-mushrooms-psychedelics/
    1 point
  34. Another in the seemingly constant stream now of psilocybin trials for PTSD, depression and stuff (alongside any currently underway specifically for treatment of CH): "Magic Mushrooms Are Safe to Treat Mental Health Conditions, Says Another Landmark Trial."https://www.goodnewsnetwork.org/magic-mushrooms-mental-health-the-journal-psychopharmacology/ "A trip to the doctor for a dose of magic mushrooms could help treat mental health conditions like PTSD, according to new research. Small doses of the psychedelic drug psilocybin, found in magic mushrooms are not only good at easing disorders that are resistant to treatment, but they also have no short or long-term side effects in healthy people, scientists say."
    1 point
  35. 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.
    1 point
  36. In short, High dose prednisone 60-100 mg a day for 2-4 weeks can help especially in an episodic situation while other modalities kick in. It can also help with getting some sleep if one gets strung out on nocturnal attacks. Many docs prescribe a dose pack which is a burst dose with quick taper commonly used for back pain. This may have short term help but its not enough for cluster headache in most cases. Of course there are costs with the benefits. Prolonged steroid use can suppress the adrenal glands and it might be a struggle to get them back in sync. The more feared side effect is aseptic necrosis of the hip. This is a situation where the blood supply to the hip joint is occluded with small fat emboli and the bone dies and the joint needs replacement. Unfortunately this situation is not dose dependent and unpredictable when it might occur. On the flip side many many folks need steroids for a variety of conditions and tolerate them just fine. Long term steroid use can cause other issues so its not practical in our situation. The most common side effect is agitation and short temper especially during withdrawal.
    1 point
  37. 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
    1 point
  38. Juss, When I first joined this board, almost exactly eleven years ago, I was desperate to help my daughter (the person in my family who has CH). That's why I picked the screen name that I have. There was a guy who was furious with me, and let me know that in a very harsh PM, because he thought I was trying to make myself sound like something special, I guess like the "father" of CB or something. Farthest thing from my mind, but he wasn't having it. (He was generous enough to write me an apology, a few years later, for that and some other irritations he had with me. I have always been touched by that decency on his part (Brian, if you're listening. . . )) I mention this because I think you might have me confused with the guy who is indeed the "father" of this board, Bob Wold, whose screen name is Psiloscribe, and who perhaps is a genius in terms of knowing things about CH. I have no knowledge about Botox, and don't think I have posted anything about Botox, except maybe to point someone to the research here and there. If I were to need anything to convince myself that I am not a genius, it would be your posts, which I ponder from time to time, not only because of their content, which I generally can't grasp (but which I am glad to see that others, such as Bosco', Shaun', Jeebs, and jon' are learning from, so they can help teach me/us), but because they illustrate to me that I only know "a lot" about the most conventional things related to CH -- oxygen, meds, RC seeds, and a couple of others -- and the advice I share is nowhere as sophisticated as it perhaps could be. I have been telling myself to go back and thoroughly read your posts and links so I could at least be a little smarter, and with some free time I hope to undertake that project. (You reminded me of one of my favorite lines from a novel I liked quite a lot, by John Lanchester. The narrator, who one slowly comes to realize is completely nuts, is very jealous of his brother, who many consider to be a genius. The narrator says, "I myself have always disliked being called a 'genius.' It is fascinating to notice how quick people have been to intuit this aversion and avoid using the term."
    1 point
  39. I'm a masochist in the BDSM lifestyle, and I tend to play pretty hard. Well, hard in respects to other people in the lifestyle, still pretty tame compared to a cluster attack. I think I've had a sadist top out at around 4 on my cluster pain scale. And that was pretty serious play. After, and during such play, the endorphins take us to a place we call 'subspace', which is similar to deep mediation. You become detached from the body and the mind can flow freely. Of course there is also often (not always) a sexual element at well, and orgasms can be pretty mind blowing. I find it very interesting to play with extreme pain in a good way, while also hating extreme bad pain such as migraines and clusters. I truly have a love/hate relationship with pain. But when I can control it, it's pretty amazing. Mox
    1 point
  40. I gurn loads just before an attack the missus notices and always will say that she knows a good 15 mins b4 I get hit. I can't really afford to lose the weight as I'm stick thin as it is . I've never been above 154 pound . After my most recent cycle I dropped to 112 pounds.
    0 points
  41. I wish that I did know something that caused it Bosco! The only thing that might have helped is that I got pregnant. I miscarried at 2+ months and the hormone change could have affected my CH, but I was too upset to notice, you know? They were gone after that event. Then that brings up 'Well, why did they return?' Also, don't know. Can't blame my move north, as I had been living here for 6-8 months when they showed up. But looking back, I can recall two short cycles before the move. I had gotten a concussion a short time before the first cycle. My first 20 years, I was a low level chronic, undiagnosed. I was on Elavil and one other med whose name escapes me at the moment. Inderal I think. So, I had no idea that I had CH or that they came in two varieties. That cycle was short, but hell none the less and the second one sent me diving into 'what is this????' Then I took the the printout of CH to my doctor. Carbemazepine was prescribed at that time. He had been on the Migraine bench till then. I had tried trex once and thrown it out due heartbeat issues bugging me. Additionally both little cycles I had then were thought to be 'other' things and were treated with Pred of all things and that killed them. Funny how that worked out. As it was, they were both about 2 weeks duration. Girl, you are making me think too darn hard for this early!!!
    0 points
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