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  1. 6 points
    ThatHurtsMyHead

    Describing CH to non-believers

    Maybe a bit of comparison on my Kipp Scale, for those that have a different interpretation: I've broken my wrist before. It was 10 at night and I didn't feel like going to the emergency room. I decided to go to bed and go in the morning. I went right to sleep like a baby 15 minutes after breaking it. Slept fine got up. Put my wrist in a tshirt sling and went to the emergency room. My kipp level was maybe 3 out of 10. I've de-gloved 2 fingers on my right hand in a sailing accident. The index and middle finger had the meat pulled right off the bone. My middle finger bone was sticking out like a skeleton you see at Halloween. Of course both fingernails were peeled off as well. We were docking a large boat and my fingers got caught in a cleat. I yelled up to the guy on the bow not to dilly dally, that he had to take me to the emergency room as soon as the boat was tied up. I grabbed a hand towel from the galley and ran back on deck spewing blood everywhere. I finished securing the stern and port of the boat before showing my friend what happened. He drove me to the emergency room where they reassembled my fingers. Oh and without any anesthetic. I'm immune to the anesthetic they use for nerve blocks. My peak pain through the entire event was maybe a 4. My pain tolerance is VERY high due to my years with CH I can only assume. I've had 3 kidney stones. Passed one of them. Kipp 5 to 6. Other two had surgery to remove and were maybe Kipp 3 tops. To say my pain levels with a CH K10 are worse than an amputation without anesthetic is a no brainer. My K10's are much worse. Everyone is different, but pain is pain. Support for our CH family here is what's its all about. J
  2. 6 points
    MoxieGirl

    Doctor vs Patient

    This popped up on my Facebook feed today, and I thought it apt. MG
  3. 6 points
    Personally I'd switch doctors if one laughed at me.... Internet based cluster headache communities helped save my life. I have no time for self important gasbags who believe they know it all.
  4. 5 points
    Hi bobcat, Well that sounds rotten. Certainly not CH as the headache is all day, also CH is strictly one sided- sounds like yours is not? Not CH in which case verapamil is not going to help at all at all. Indomethacin is non specific, certainly a good anti-inflammatory, beware known to be very irritating to the stomach. Best avoid using the term cluster-migraine as it causes mass confusion and it is mostly used by folks who know not what the attacks are. Your story at the gym (at least you were lifting a dumbbell) and sudden headache- that is often one of 2 things, a thunderclap headache- which can be a syndrome known as reversible cerebral vasoconstriction syndrome (RCVS) but that only lasts- days to weeks; or could have torn a muscle, ligament or other neck hardware resulting in a cervicogenic headache (caused by neck problem). I totally understand why they thought of low pressure headache- can present with quick onset headache focused at the back of the head (can be thunderclap). Low pressure/low CSF volume headache is generally positional - you get much better quickly lying down, with head down, only for the pain to come back quickly when upright. Out of control high blood pressure can also present like this- as you have high blood pressure you had better be measuring your blood pressure at home (with a home BP kit) to make sure it is not very high). Botox is not going to help you. I was recruited to the Graham Headache Clinic at Brigham and Women's Faulkner Hospital April 15th. Fell free to PM me if you have any Qs or bmcg@bu.edu
  5. 5 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
  6. 5 points
    jon019

    Fog = Shadows?

    ….a clusterhead's gut is better than many a doctor's head....and CERTAINLY better informed...….
  7. 5 points
    Psiloscribe

    Gammacore/electrocore

    Just a few comments on the gammaCore device. As was mentioned by someone earlier in the thread, I think the first inclination on the device should be of the positives it brings. The cost is more a product of our broken and complicated medical system than of it's current cost. The Vagus nerve has long been discussed as it's potential involvement in cluster headaches. So it was a logical choice in research. The company did spend millions on this research and it has an important role to play in the overall need for more research into clusters and helping find another piece of the puzzle. Even research that eliminates possible routes to successful treatments and an eventual cure help paint the picture and help us all zero in on discovery. So, the most important part of this particular story, to me, is the basic research and someone, anyone, investing money into searching for something that helps us as a community that has for so long been completely ignored. The eventual effectiveness of this or any treatment is secondary. Of course we all would hope that this research finds is help but some things will be more of a help than others. Its most important that they keep searching, keep researching. The FDA approved this device because they understood that even of only 30% of the people using it were helped, that's 30% of an entire community that needs help. That's 30% of a community that can find a new option that helps that they didn't have before. I'm extremely happy for those 30%. It should also be important for the rest of us in that there are people looking for things that can help us. That alone should give hope to 100% of the community. Clusterbusters has been trying to help the community since 2002. In many cases its been helping people one at a time. That take s a lot of time and dedication from a lot of people. We appreciate anything that helps just one of us. This is a very close knit community and we know that helping just one person, helps the entire community. When individuals or companies or even government agencies try to take advantage of the community and anyone in the community, we have and will take a stand and try to protect each of us. We have been following this research for many years and we have heard many reports of people getting better results the longer they use this device. Yes we've also heard many stories where it was not helpful at all. Its a similar story for so many of the treatments we choose or have available. We will stay on this and follow up on its success and failures. With the cost being the biggest hurdle for people to try it, we will continue to fight to get insurance companies to cover its cost. As everyone knows, Clusterbusters has always offered help and advice regarding things that people can't get a prescription for from their doctor. We also know that a large portion of our community relies upon staying within the rules and only using prescription medications and treatments. We fight just as hard for all of them and try to move the entire medical community forward to find help for all of us. People should be able to choose whatever treatment works best for them and they should be able to afford that treatment. As simple as that sounds, there are many barriers that we need to tear down. Peace out~ Hope everyone has a great 2019 Bob
  8. 5 points
    Jimmy Martinez

    Happy Holidays and thank you

    I've been able to get tremendous help and support from the people on this forum. Thank you. Please know that for the rest of my life, I'll be praying earnestly for everyone to be healthy and pain free. And for there to be a cure. Season's Greeting to all, Jimmy-
  9. 5 points
    Batch

    Oxygen supplier

    Freud, Fair question and thanks for the kind words. I'm a 74 year old retired Navy Fighter Pilot. I was flying Navy fighters like the F9-F8 Cougar and F-8 Crusader, a.k.a., Mig Master before they started the first Top Gun class... I've a degree in Chemistry and at one point, was considering a career in medicine... I got a ride in a Navy trainer aircraft (T-34) my Junior year at the U of W, Seattle and that sealed the deal... The thought of flying Navy fighters appeared to be be a lot more fun than another 6 years of school so I joined the Navy to fly in 1965... I'm also a long time CHer (first CH attack in 1994), chronic since 2004. I've over 3000 hours flying Navy fighters and all of that flight time was spent breathing 100% oxygen from takeoff to landing (usually aboard an aircraft carrier). I can assure you, I was sucking down 100% oxygen at flow rates that support hyperventilation during high G-Force dog fights and combat maneuvering... like getting shot at by bad guy SAMs and AAA. I'm a patent holder for the demand valve method of rapid CH aborts method of therapy. I also have 15 years training in aviation physiology with most of that training in oxygen breathing systems. I'm a member of the American Academy of Neurology as a cluster headache researcher and I've had the opportunity to meet with some of the top neurologists in the world experienced in treating patients suffering from cluster and migraine headache. Bottom line... I'm here to help CHers avoid the terrible pain we all know so well by providing information outreach on safe and effective methods of controlling CH (oxygen therapy with hyperventilation as a safe and effective CH abortive and vitamin D3 therapy as a safe and effective CH preventative). I started doing this in 2006. You can find my web page at VitaminDWiki at the following link: http://is.gd/clustervitd 'Hope this answers your question. Take care, V/R, Batch
  10. 4 points
  11. 4 points
    Dallas Denny

    Who’s going to Dallas this year?

    That's an affirmative on the pizza and beer Freud! Lmao at "perfect record of resisting honky tonks"......I lived in Cowtown from 68 to 84 and played guitar and sang in bands the majority of that time period.....I imagine I've sang a country song in near about every honkytonk in town!! Sounds like we're gonna have a big crowd with lots of 1st timers this year so really looking forward to meeting all of ya'll...I had the pleasure of meeting Pete in Austin after knowing him online for many years and looking forward to seeing him again......and I've talked to several folks that I've met and known here for a long time ( all from the early days of the board but who are no longer active here) but have never met in person that are coming as well.....AND, I finally get to meet my co-conspirator, err, umm, I mean co-moderator Spiny in person AND, bejeebers is gonna try to make it up from Austin......and, of course, my BFF "hipshot" AKA Hollywood Dan of Nat Geo fame will be there! Shit the bed Loretta! It's gonna get rowdy ya'll......Yeeee Feckin Hawwww! DD
  12. 4 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)
  13. 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
  14. 4 points
    Rod H

    Score

    Picked up 2 welding o2 tanks from a buddy for $40 today. Nice edition to the arsenal.
  15. 4 points
    G'evenin ya'll! Many good points here! As Chf stated, much has changed in the years since we both became involved with clusterbusters.......all of the information in the busting files is based on the anecdotal evidence and surveys from the first few years.....and we've now added another 10 years of folks experience and anecdotal evidence with no new surveys or significant rewrites to the original information. I've spent many, many hours cleaning up the corruption caused to the numbered buster files by the migration from the original yabb powdered board....however, it's not possible to pin them in numerical order so I've pinned just the "Clusterbusters Files Content" page with current links to the numbered files. I'm also going to meet with Bob W at the conference to discuss updates and changes to the board along with staffing..... I ain't no sprang chicken, Spiny is recovering from surgery, we've completely lost bejeebers, Jeff (That hurts my head) isn't here as much as in years past, and everytime I talk to Bob W he's headed to another conference or presentation on our behalf so we are rarely graced with his presence. At any rate, please continue with suggestions in this thread and I'll use it for notes when Bob and I meet up. DD
  16. 4 points
    ThatHurtsMyHead

    Describing CH to non-believers

    The reality is everyone has a different pain level from their CH. They also have different pain tolerances. I'm one of the people that have attempted suicide due to my CH. When I get a K10, it IS a K10... I've passed kidney stones and they were a walk in the park compared to my K10 attacks. I've beat my head on the floor till I've passed out. Because some people with CH don't really get K10's doesn't mean others don't. I wouldn't downplay any description. Otherwise you shouldn't complain if someone just tells you to go take an aspirin when YOU have an attack. (see the comparison?) I've spoken with people that can't understand why some of us use indole ring hallucinogens to treat our CH. They've said. "CH isn't that bad. Just wait till the attack passes". "Why would anyone take an illegal substance to treat their CH. It's not that bad"... The examples go on and on. To those people... I seriously question if you really have CH. I KNOW how bad mine was before I started self treatment. I'd never go back to that world, or I'd be outa here if I did. I think healthy debate is healthy. Let's just not downplay someone else's description just because your pain isn't as bad as theirs. You might wake up one day and find your pain IS as bad as theirs and reassess your own Kipp scale. (I certainly hope not though). Cheers, J
  17. 4 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
  18. 4 points
    Bilal

    My D3 Regimen Log

    It's been almost a year since I last posted. I guess it's true that you tend to take your health for granted. Fortunately, I've had the luxury to do so this year. I'm glad to report that ever since I started the D3 regimen I've been completely pain free. No more headaches, and not just CH. I don't recall having any kind of headache in almost a year. I've been thanking God and the fine people of this site that directed me to this regimen whenever I can. To those of you still undecided, please give the D3 regimen a chance and stick to the guidelines. And to the people on this forum that helped me, from the bottom of my heart, THANK YOU.
  19. 4 points
    jon019

    Cluster rules

    ….it won't kill you...no matter how many times you wish it would....
  20. 4 points
    Dallas Denny

    My how time flys!

    Just realized that the forums 9th Birthday slipped by me last week!! The board went live October 27th of 2009 with just a handful of active members the first few months!! What a long way we've come since those early days! So, a belated Happy Birthday to the Clusterbusters forum and a big Thank you to BobW and DJ for giving us this space! Dallas Denny
  21. 4 points
    Thanks, Denny. i suppose yale has recognized that it has to do something to make up for having me as one of its graduates.
  22. 3 points
    xBoss

    “Cure”

    Probably need to up the dose.
  23. 3 points
  24. 3 points
    Moxie Girls first rule of Cluster Headaches: No two people's clusters are the same, and just as soon as you figure yours out, it changes. MG
  25. 3 points
    I think you are having slapbacks due to not fully aborting the attack. I had the same experience when I started using oxygen. I would get hit at night, 10 to 15 min on O2, and back to bed. Repeat every 90 minutes all night. This is not my usual pattern, I get hit at night, but usually only once or twice a night. This went on for a few weeks, and I thought maybe O2 didn't work for me. I was even starting to think O2 was making things worse. I was experiencing slapbacks because I hadn't fully aborted the hit, even though I was pain free after a few minutes on O2. I bought the special Cluster mask, which was well worth the $25. I increased my flow rate from 15 to 25 LPM and increased the time to 15-20 minutes and then the 5-10 minute cool down (10-15lpm) at the end. I am not an expert by any means, but I would recommend increasing the flow rate. Sometimes I get worried about my oxygen supply and cut back the flow rate to conserve, and I regret it every time. I can abort with 15lpm, but I sometimes end up back on the O2. I have a gigantic H tank at home (the O2 delivery guy hates me) and an E tank for the car. I never play with the low flow rates anymore (always 25LPM) on the E tank because I am at work and have a fear of running out of O2. I might use more O2 the first time, but I only need one trip to the parking lot. I understand your desire to conserve oxygen. My insurance won't cover it, and it can get expensive. You might want to look into welding oxygen. It is the same quality as medical oxygen, but comes in a different tank and is usually cheaper. I have used welding oxygen in the past, and would not hesitate to use it again. Also, that big H tank of medical oxygen actually comes in a welding tank that is painted green. Another idea I could suggest would be supplementing the O2 with an energy drink containing caffeine and taurine. This has helped me abort daytime attacks. However, I haven't tried it at night. I have read from others on this board that they can drink an energy drink during a night hit and still go back to sleep. Above all, I would recommend not giving up on oxygen. Increase the flow rate and try to find an alternate (cheaper) supply. You have proven you can get pain relief from oxygen, now you just have to dial it in to prevent the slapbacks. You should get bigger tanks, too. Those E tanks are awesome for the car or travel, but the big boys are best for the house. My oxygen delivery company actually charges me the same price for the H tank as the E tank (which makes no sense to me, but works out in my favor). Congratulations on kicking out the triptans. I did that a few months ago and have felt much better. I can't prove it yet, but I think it has reduced the number of attacks I get. Also, congrats on kicking the topamax, the worst drug I have ever taken. I'm glad it didn't help me, because the side effects were insane. It would have been a hard choice if it actually helped.
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