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  1. 4 points
  2. 4 points
    cathb357

    Newb here

    Trucker, This is a good place to get some excellent information and learn you are not on your own. This community gives value by sharing their experiences, The good, bad, ugly. do's and dont's very valuable when negotiating CH. Read the "New Users-Read Here First" the link is at the top of the page (blue bar). There are good and caring people here with a common goal. PF or Pain Free. I am currently busting a cluster cycle, I am episodic and am getting better at being ready to push the beast back into the hole it crawled out of. Take your time here the wealth of information will change your life for the better! Look forward to Pain Free days ahead. Cath
  3. 3 points
    I’m glad ur doing well, but be vigilant, the truth is it is not a cure, just a preventative. Not even shrooms are a cure, clusters can change at any given time for whatever reason and break through whatever treatment you are using...now that you have your clusters under control, definitely would be worth while doing the d3 regimen along with preventiative busting (if busting is something u are prepared to do, probably worth it IMO)
  4. 3 points
    Holy f'ing shit.....how could I have been so stupid to miss this for 38 years??????!!!!
  5. 3 points
    Freud

    Newb here

    @jost it sounds like you’re using imitrex pills. In general 95-99% of us don’t get any kind of relief from oral sumatriptan. The injections are %1000 times better. Most insurances will cover 12 injections a month if they cover injectables. You ask your Dr to write for the 6mg auto injections and search you tube for splitting injections. You can get 2-3 doses out of each one. So you could get 24-36 doses per month. Most importantly oxygen is the number one abortive in my book. Frequent Imatrex use is reported to increase severity and amount of attacks. I save my injections for important days like family events or for the kip 10s (search the web for kip pain scale) that won’t break with the oxygen. You need high flow 100% oxygen at a min of 15-25LPM. So you go through it pretty fast depending on how many times a day you get hit and how long it takes for the oxygen to work. My CCH (chronic CLuster headaches) used to abort after 2-3 min of oxygen and I stay in for 10min total. To avoid a partial abort. These days for the kip 8-10s it can take 10-30min for them to break, but that’s still probably faster than the oral Imatrex. Btw the injections work in 5-10min. Look around, the search bar is your friend. If you want to know more about busting and have read the new user stuff make a post in the theory and implementation section. Or any where except the general/ public board i wish you luck, we’re here to help brian
  6. 3 points
    Dana129

    New need info

    It really depends on the person, me personally, my worst period is the mid point of the cycle, it gradually lowers in pain intensity and frequency once I’m passed the mid point, everybody is different, though I have heard the worst headaches are at the end for a lot of people. I can imagine you’re having a very tough time right now, so i think you should look into the D3 Regimen. It’s a list of non prescribed vitamins taken daily, it’s highly effective with an 80% success rate of either complete pain free living or reduction, I suggest you research into this, it is cheap, safe and by far the best preventative for clusters, much better then verapamil or any other med a doc will give you, if you look on the new users tab, you’ll find some VERY helpful info to help you break the cycle, busting is also very effective, but I don’t have much knowledge on that personally, the d3 regimen is probably the best thing to ever happen to me, i started it 3 or so weeks ago and it has pretty much changed my life, I haven’t felt so great since before my first ever cycle, even my remmision periods were nothing like this
  7. 2 points
    Batch

    Who’s going to Dallas this year?

    Brian, Meeting other CHers for the first time at a CHer gathering like this is a very special thing... Just knowing you're not alone with this disorder is reason enough to attend. The really interesting thing is you'll meet a CHer you've never met at an event like this and in a few minutes talking with them, it will seem like you've known them for many years. I'll be there with the latest data from the online survey. Take care, V/R, Batch
  8. 2 points
    I've been on a paleo "diet" for almost a year. I did this to combat the "early stages" of Rhuematoid Arthritis (RA). I just visited my rheumatologist who confirmed my blood no longer has enough inflammation in my body to show up as being positive RA. My first thought was "Eff you a$$hole, why didn't YOU suggest changing my diet?" Thanks to my wife's diligence, we took control of my care. This quack outlined a treatment plan that included a lifetime of methotrexate. Excuse the rant, I still have clusters.
  9. 2 points
    Freud

    This helped me- hopefully will help others

    Unfortunately many people have posted about diets here. Be it keto diets or histamine free diets, some have said it helped them. However, some times it’s just coincidence. Spontaneous remissions do happen to episodic and chronics. It’s rare, but I am skeptical. Like Dana says it’s no cure but may have been a trigger for you. We all have different triggers. If you want to see how many people found a cure only to find out it wasn’t search in the search field for “cure”. Start with the oldest post and read to current. There are over 25 pages of cures. I hope to god you never get another CH. but please don’t use the word cure here. Thank you for sharing hopefully it helps someone else.
  10. 2 points
    Yes this was some disappointing news. The article is a year old and since then they have also stopped the study with episodics. Personally I believe that part of the issue was that they didn't learn about clusters or cluster patients nearly as well as Eli Lilly did and didn't design their study properly. They never engaged the cluster community. Bob
  11. 2 points
    jon019

    The 'driven' gene?

    ...something more basic....."survival".....
  12. 2 points
    CHfather

    Hemicrania that mimics CH

    Thank you for this thoughtful response, Siegfried. I'll just add a few notes. One is that recommended dosing for indomethacin is all over the place, between 50mg/day and 300mg/day. And while some sources say the effects if indo can be seen pretty quickly, others say it can be a couple of weeks or more. So I can't help but wonder how many people have "tried" indomethacin but (as is also true with some CH meds like verapamil), not really had it at high enough doses for a long enough time for a fair test. Second, I would be cautious about any data regarding hemicranias, just as we have had to be cautious about CH data. Hemicrania wasn't recognized as a medical condition until the 1980s, and I'm going to guess that the majority of doctors don't recognize it, so it can be strongly underreported. I wonder sometimes how many cases of "intractable chronic CH" are actually misdiagnosed hemicranias. There was a journal article in 2001 with the title "Hemicrania is not that rare." One of the authors was the great student of CH, Todd Rozen. (https://www.ncbi.nlm.nih.gov/pubmed/11577748). Maybe current projections factor in that observation. Also, the women/men thing is highly untrustworthy in my view, because as we have seen with shifting CH "statistics" over the years, women quite often get misdiagnosed. Even though the hemicrania reports go in the opposite direction (more women than men with hemis; more men than women with CH), I just don't trust any gender-related statistics since there's no reason that I know of that there should be a prevalence in either direction, and so I tend to think it's a function of some kind of diagnostic error. All that said, your general principle is probably correct, and maybe people should treat things as CH unless standard CH abortives don't work for them. (On the other hand, there are some "experts" who say no harm done with first trying indomethacin so hemicrania can be ruled out.)
  13. 2 points
    CHfather

    Newb here

    Jost, there's a lot of information in this file about oxygen and other strategies: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ The vitamin D3 regimen is another thing that you really need to try.
  14. 2 points
    FunTimes

    Newb here

    Here is a link for the D3 a member on here named Batch came up with https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people You will want to go get your blood test to see what your vitamin D levels are now and then again about 3 months after you start taking all the vitamins to see what changes have occurred. After that you can tweak things as needed to help better. A lot of people on this site have gotten relief and poster results and different things they may have added, search D3 on the upper part of the page under your user name and you will find a tun of information. You can click on the envelope on the top of this page next to your user name and send Batch a message with any question you may have after reading up on this and I am sure he will get back to you Are you using anything else to abort your attacks? You can do it without insurance, plenty do, by setting up a welding oxygen setup. You will want to get oxygen as soon as you can it will change your life for sure.
  15. 2 points
    Getting on the D3 is the fastest thing you can start to do on your own. Do you have a doctor or headache specialist you see? Getting the oxygen setup would make a world of difference in how you feel and you most likely will not have the 2-3 hour hits. Oxygen if used correctly can abort a hit in under 20 minutes. I down a 5hr energy type drink on my way to the oxygen tank to slow down the ramp up time of my clusters. Other things you want to look at on this site are ginger, ice, hot foot bath, exercise. these are things that cost little to nothing and you can start today at home Busting is another option you can look into, this will take a little more time but has worked wonders for a lot of people. Poke around in all the forums and dont be afraid to ask questions.
  16. 2 points
    Batch has modified the regimen a bit over time, but I believe the basics are still what is listed at the bottom of the fifth page (which has the page number "2" because it's the second page of the second section -- it's the fifth page overall) of this document: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 It's also the chart a little way down on this page: https://clusterbusters.org/forums/topic/1308-d3-regimen/ It does not look to me like you have the right stuff at all, and you need to stop the 25,000IU of Vitamin A right away. How soon you might see results depends in part on how low you blood vitamin D is, among other things. Usually it's at least a couple of weeks, but for some people it's quicker than that. Read in either of the two files I linked you to about "loading" to ramp up your D level faster. You can send a message to Batch by clicking the envelope icon on the top right side of the page and typing Batch into the "To" line. He's a great guy who will be happy to help you. How much O2 will cost also depends on a lot of things, including what your insurance coverage is. You either need to get a prescription from a doctor for O2 or set up a system using welding oxygen. Very different initial and ongoing costs associated with each of those. Having O2 will greatly reduce the desire you state to harm yourself. When you get started on it, get back to us and we can help you. In the meantime, I'd urge you to read this whole file. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ There are things you can do right now to reduce your suffering.
  17. 2 points
    I think they are very close to each other in the level of pain. I've not had Trigeminal Neuralgia, but have spoken to people who have, and what they've gone through to make it stop. If I had to guess, and it might be biassed, I'd say TN maxes at a 9 and CH pings a 10. They are both associated with the trigeminal nerve, just in different places in the face. But, pain isn't the element that makes something horrible. At least with CH, they don't often last longer then 3 hours, TN can last for days, and can be triggered by a smile. There is clearly more than one Hell. Mox
  18. 2 points
    Snazzy93

    Just diagnosed

    Welcome! I'm new here too, although I've had clusters for 9 years now. This forum and the people on it are beyond amazing. It's almost funny how close your history is to mine. From the times, and severity to the amount of time it took to actually get diagnosed. I really felt as if I was reading my own story lol! Did they prescribe you with anything to abort the headaches when you have them? Sure the main goal is to avoid getting them all together, but the sad fact with clusters is that they're very sneaky, and you'll probably end up getting them here and there despite preventative measures. Oxygen has been my go to. Before the oxygen, I had nights that were beyond miserable. My bedroom wall will agree. (Two holes, one from a fist, and one from my noggin...) It's crazy how these headaches literally make you lose control of yourself, they're a wicked monster, but they can be controlled. I would for sure scan this whole site, because there are so many stories and the advice is amazing. These headaches are different for everyone, so what works for someone else may not do anything for you or I. Best wishes! Being diagnosed and educating myself here were the two biggest steps towards controlling these monsters!
  19. 2 points
    Hey batch, I meant what I said you do a great service to the community. I have directed many people to D3 and your work. It was just the opening statement that got me. Keep up the good fight. Brian
  20. 2 points
    Hey Freud, Fair comments about my post to JH. Too much bravado and not enough factual data... I've fixed that with an edit. Take a look and let me know if it passes muster. Regarding the online survey data, I've kept my reporting of that efficacy data as objective as humanly possible. I'll be happy to show you the survey database this coming September at the Clusterbuster Conference in Dallas, TX. Credibility is everything when talking about efficacy of a CH intervention like Vitamin D3, so I'm not about to risk that credibility by making false, misleading or exaggerated claims. I've too many neurologists, headache pain specialists, vitamin D3 experts, CHers and a growing number of migraineurs following my work. A few neurologists have even been kind enough to provide peer reviews and feedback... Two of these neurologists are CHers so are taking this vitamin D3 treatment protocol to prevent their CH. For reference and for those who don't know me, I'm a 74 year old retired Navy fighter pilot with over 3000 hours flying Navy fighters. I have a dated degree in Chemistry circa '67 from the University of Washington, I've been a CHer since 1994 and diagnosed as chronic by neurologists at NIH in 2005. I'm not a doctor so I don't diagnose, prescribe or treat CHers or migraineurs. What I do is provide information outreach on safe and effective non-pharmaceutical CH and MH interventions (O2 and Vitamin D3). That information is based on feedback data from thousands of CHers I've been collecting since September of 2006 on CH.com with my first posts on the benefits of oxygen therapy with hyperventilation as a CH abortive, on 10 December 2010 when I began posting about my experiences preventing CH with vitamin D3 and the cofactors as well as detailed data from the online survey of 293 CHers following the anti-inflammatory regimen CH preventative treatment protocol to prevent their CH. This survey went online over the Internet in January of 2012. When asked for suggestions or answers to CH related questions about this treatment protocol, I generally provide answers based on what many other CHers or I have found. I also suggest CHers and migraineurs see their PCP/GP or neurologist to discuss the anti-inflammatory regimen and to obtain the essential lab tests for serum 25(OH)D, calcium and PTH. I don't sell anything, nor have I taken one cent in renumeration for any of my posts about the benefits of vitamin D3 in controlling CH and MH here at Clusterbusters, over at CH.com or on Migraine.com... My wife will attest to that fact as she does our books. She frequently points out that I've spent an average of $2,500 a year (out of pocket) since 2006 providing information outreach to CHers and MHers on the benefits of oxygen therapy with hyperventilation as well as the benefits of vitamin D3 and the anti-inflammatory regimen in preventing CH, MH and in promoting improved health since December of 2010. I even spent two weeks in early 2018 posting in Facebook CHer and Migraineur groups. I got booted off Facebook after a couple posts on the effectiveness of the anti-inflammatory regimen in preventing migraines. It appears Facebook's Big Pharma sponsors didn't like what I posted so had me blocked. I've been paying $100/year to keep online survey running since 2012 and my annual dues as a member of the American Academy of Neurology (AAN) as a vitamin D3 and Cluster Headache researcher have cost me $260/year since 2013... My annual travel, lodging, meals and registration costs to attend conferences, meetings with neurologists and to make presentations on the effectiveness of oxygen therapy with hyperventilation and the anti-inflammatory regimen since 2009 have averaged $2,000/year. I've made two trips to Switzerland, two trips to Norway and one trip to Germany to attend meetings with fellow CHers at CH conferences and to meet with neurologist like Prof. Dr. med Ottar Sjaastad in Haugesund Norway, Prof. Dr. med. Arne May at his headache clinic at the University of Hamburg Eppendorf (UKE) Germany and Dr. Todd Rozen, MD, FAAN at his facilities in Wilkes-Barre PA. If you'll check the fine print in the ICHD-III beta website, you'll find Dr. May and Dr. Rozen are in the working group responsible for trigeminal autonomic cephalalgias. Dr. Rozen was kind enough to stop by my poster presentation on results from the online survey of CHers taking the anti-inflammatory regimen at the 2014 AAN Annual meeting in Philadelphia, PA. The reason for the Cowboy getup is simple... I grew up on a horse and during my poster presentation, I didn't want anyone thinking I was a neurologist. What most people don't know is I've been quietly going down the rabbit hole in search of answers that will help me define a more detailed pathogenesis of CH and MH as well as determine how and why vitamin D3 and its conutrients/cofactors are so effective in preventing CH and MH. I track all vitamin D3 RCTs as well as cluster headache and migraine RCTs on clinicaltrials.gov and weekly editions of the AAN journal Neurology. This research has taken me into the realm of molecular biology and gene mapping. There are quite a few neurologists doing this kind of research using anti-CGRP monoclonal antibodies as CH and MH prophylaxis, but none using vitamin D3 as a CH or MH prophylaxis. I'm a member of PLOS - a nonprofit publisher innovator and advocacy organization, the Cureous journal of medical research, and Researchgate where leading edge studies and scientific papers like this are published. That said, there are a growing number of physicians now trained in the Coimbra vitamin D3 protocol for preventing multiple sclerosis. Dr. Coimbra has treated over 2000 of his multiple sclerosis patients with his vitamin D3 protocol and his patients have a 95% complete remission rate. So why am I doing all this? It's clearly not for the money... It's also not an ego trip seeking credit for the many findings made public about the safety and efficacy of oxygen therapy with hyperventilation as a CH abortive or the anti-inflammatory regimen as a safe and effective CH prophylaxis... That credit goes to the thousands of CHers who took the leap of faith to try these two CH interventions then took the time to provide their feedback. That feedback is what motivates me to keep doing this as I know the terrible disabling pain of our disorder and that the good news is it doesn't need to be that way. By the way, I'm a strong supporter of CHers using psilocybin or seeds as a safe and effective CH prophylaxis. The data I've collected to date from CHers here at Clusterbusters indicate the vitamin D3 protocol and psilocybin treatments are not mutually exclusive. Although the data is largely anecdotal due to small numbers, It appears these two CH prophylactic treatments have a synergistic effect when taken together. Take care, V/R, Batch
  21. 1 point
    CJW

    printed hand out

    Card's you can carry with you: “I am a cluster headache sufferer. If I am having an attack, please do not call an ambulance, there is nothing the medical profession can do. Cluster headache is a debilitating disease and is one of the most painful condition known to man. They are also referred to as suicide headaches. If you are interested in learning more or willing to be an advocate, please contact ________________________________.”
  22. 1 point
    Hey Gail, There is no secret. Cluster busters openly talks about what mushrooms can do. Look at the top of this page, it has a new users read here first link. https://clusterbusters.org/forums/announcement/6-new-users-read-here-first/
  23. 1 point
    Pmcali1

    Emgality Shot for Episodic Clusters

    I went to my neurologist today and she informed me it was approved yesterday by the FDA for CH and will be available for prescription (300 mL) Monday. She had samples of the migraine 130 mL doses that I took two of. Supposedly it takes a few weeks to a month to start working. I’ll keep you posted.
  24. 1 point
    Freud

    Treatment For my gingivitis

    The take home point here is that if they use a numbing agent; they use one without epinephrine.
  25. 1 point
    Hipshot

    Occipital Facet Nerve Block

    In stopping at nothing to stop my pain I have tried damn near everything and learned to never expect much relief. mushrooms have proven best but at times don't fix me. I think I'm not alone, so I keep trying anything and everything. I know that allof us keep trying; hoping for success for ourselves and the other poor souls that suffer for years. Continuing to try new methods to stop the pain keeps me going I suppose. To the point. I got an occipital facet nerve block a week ago and I have had only one headache since. I have been getting occipital nerve blocks on and off for years, mostly because I like the conscious sedative that my pain doc gives me prior to my shot. The facet block did something really magnificent. It feels like a cushion or some kind of badass lubricant was applied just to the perfect location. My headaches always seem to start in my neck...quickly moving to the eye and temple. :-X This may well be worth some of you trying. If it can be blocked with a shot, perhaps there is a more permanent fix. Just thinking... http://swarminteractive.com/vm/mobile/client/1257/#group?key=G_7db3f151
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