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  1. 8 points
    Dana129

    Life Update

    Well guys, I’d like to start with my weight loss, as some of you may have read in my earlier posts, perhaps about 2 months ago now I believe, I had a significant weight gain from 75 kilos to 88 in the space of 4 months from January, where my cycle started, the cycle was only small, but I had dealt with heavy post cycle shadows for a several months. As a result, I stopped going to th gym and began eating very unhealthy, before I knew it I went from being quite fit and athletic to overweight, I am please to say that I am at the half way point, i now weight 81.3 kilos, only 6 more kilos to go before I reach my original weight, I attribute my motivation to lose the weight to living pain free for the last 2 or so months, the d3 regimen has pretty much made me feel as normal as I was before my first ever cycle, It’s the best thing I could’ve ever asked for, also, was going to save shrooms for desperate times, but I figured I may as well add another layer of protection for my brain and have some fun as well, I’ve been hitting the books hard, and my social life is back to normal as...even met a lovely lady on tinder ( ͡° ͜ʖ ͡°). Pretty much, I haven’t been this happy since before my first cycle, and I would say that this forum is the best thing to ever happen to me...I don’t think I’d be where I am right now if it wasn’t for this place, so thank you, now the only painful thing I have to worry about now is having my foreskin cut off PS I’m going to the burning man this year, SUPER EXCITED
  2. 7 points
    I'm honored to have the opportunity to share my knowledge and experience during 2 "grow demos" as part of this years conference agenda! I've been working on a PDF file documenting all of the Teks and processes that I'll be presenting for several months now and will be putting the finishing touches on it this next week! I've done it all on my Samsung Note and am too technically challenged to figure out how to transfer it to my laptop in PDF format....but our conference chairwoman has assured me that she'll "git r done" for me when I get to Dallas the day before the conference begins. All that to say this.....if you're planning to attend the conference and want to get the PDF, be sure to bring a thumb drive with you......the doc contains a lot of pics and is extremely large so I feel like that will be the easiest, fastest way to distribute it! See ya'll soon!! Dallas Denny
  3. 6 points
    Batch

    Females and O2

    Kat, Gender has little to do with the efficacy of oxygen therapy in aborting CH. If used properly with hyperventilation at forced vital capacity tidle volumes either with 100% oxygen at 30 to 40 liters/minute with a non-rebreathing oxygen mask, hyperventilating with an oxygen demand valve, or by hyperventilating with room air for 30 seconds at forced vital capacity tidle volumes then inhale a lungful of 100% oxygen and hold it for 30 seconds then repeat this sequence until the pain is gone. In all three methods, the average abort time should be around 7 minutes with > 95% efficacy and it has nothing to do with gender. What most doctors and neurologists don't understand about effective oxygen therapy as a CH abortive, is oxygen is only half of the abortive. The other half involves blowing off CO2 faster than the body generates it through normal metabolism by intentionally hyperventilating for 6 to 7 minutes pushes the body into respiratory alkalosis. In simple terms blowing off CO2 by hyperventilating shifts blood pH to the alkaline side of neutral making it more alkaline, hence the term respiratory alkalosis. I need to point out that respiratory alkalosis from intentionally hyperventilating is temporary and harmless. It clears normally within a few minutes once returning to normal breathing rates. Respiratory alkalosis does several things that help abort CH. The first effect of respiratory alkalosis with an elevated arterial pH, is to slow the expression of Calcitonin Gene-Related Peptide (CGRP) and Substance (SP) by neurons in the trigeminal ganglia. CGRP and SP are responsible or the neurogenic inflammation and pain we know as CH. What also happens during respiratory alkalosis is elevating arterial blood pH in the lungs to the alkaline side of neutral, increases blood hemoglobin's affinity for oxygen. This enables blood hemoglobin to carry up to 117% of oxygen where breathing a little faster than normal elevates blood oxygen to only 99%. This super-oxygenated blood flow and low arterial pH does two things. It speeds up the breakdown of CGRP and SP and It also triggers triggers pH homeostasis when chemo receptors in the brain stem and aortic arch sense the low arterial CO2 concentration. These chemoreceptors signal the breathing control neurons in the brain stem to slow the respiratory rate. They also signal the heart to beat more slowly and arteries and capillaries throughout the body including the brain and trigeminovascular complex to constrict. All this happens to slow the flow of blood to the lungs to prevent the loss of CO2 and allow its arterial concentration to rise back to normal levels. While we're intentionally hyperventilating, this triggers the vasoconstriction throughout the trigeminovascular complex and this serves as a significant CH abortive effect. I can hear the wheels turning... WTF are Forced Vital Capacity Tidal Volumes? The answer is simple once you understand the terms. Tidal Volume = The volume of air (or oxygen) inhaled and exhaled. The air comes into the lungs during inhalation and goes out when exhaling, just like the tide comes in and goes out. Vital Capacity = The maximum amount of air a person can expel from the lungs after a maximum inhalation without thinking about it. Forced Vital Capacity = By doing an abdominal crunch, tightening the abdominal and chest muscles as in doing sit-ups at the end of a forceful exhalation, squeezes out an additional half to full liter of exhaled breath highest in CO2 content. If you hold the abdominal crunch and chest squeeze for at least a second, your exhaled breath will make a wheezing sound. Try it now and hold the squeeze until your breath makes a wheezing sound. Accordingly, hyperventilating at forced vital capacity tidal volumes pumps CO2 from the blood stream much faster than "normal respiration." Now for the proof this method of oxygen therapy and breathing techniques makes oxygen therapy very effective with an average abort time of 7 minutes. We conducted a pilot study of this method of oxygen therapy (hyperventilating with 100% oxygen) with seven CHers (6 CCHers and 1 ECHer, six men and one woman) in 2008. Four of the CHers used an oxygen demand valve and the other three used a Flotec 0-60 liter/minute oxygen regulator set a a flow rate of 40 liters/minute with a Cluster O2 Kit mask from CH.com equipped with a 3-liter reservoir bag. Abort times with either method were the same. Each of the seven CHers collected abort time and CH pain level at start of therapy for every CH aborted for a period of 8 weeks. This came to a total of 366 aborts with this method of oxygen therapy. 364 of these aborts were rated as successful with a complete CH abort in 20 minutes or less for a success rate of 99.4%. The results are plotted out in the following graphic. The average abort time for these 364 aborts was 7 minutes. One of the pilot study participants collected abort time and pain level data for a week while waiting for his oxygen demand valve, using a disposable non-rebreathing (NRB) oxygen mask at an oxygen flow rate of 15 liters/minute. As you can see, the demand valve method (hyperventilating with 100% oxygen) results in CH aborts 3 to 4 times faster than using a disposable NRB oxygen mask at a flow rate of 15 liters/minute. We also discovered an interesting phenomenon that the higher the CH pain level, the longer it took to abort to abort the CH. This has never been reported in any of the previous RCTs or studies of oxygen therapy as an abortive for CH or Migraine. For reference, I hold a patent on the oxygen demand valve method of aborting CH. I've also over 15 years training in Aviation Physiology primarily involving oxygen breathing systems and their use in flight. Bottom line, hyperventilating at forced vital capacity tidal volumes with 100% oxygen or hyperventilating with room air at forced vital capacity tidal volumes then inhaling a lungful of 100% oxygen and holding it for 30 second then repeating this sequence 6 more times for an average total of 7 minutes are equally effective in aborting CH. Hope this helps. Take care, V/R, Batch
  4. 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
  5. 6 points
    MoxieGirl

    Doctor vs Patient

    This popped up on my Facebook feed today, and I thought it apt. MG
  6. 5 points
    Freud

    Quick update

    Hi all, I have some great news to report! I am on my way to being PF and getting my life back thank to so many of you. The vitamin D protocol is doing most of the heavy lifting so to speak. I’m coming off of my best week in over a year but who’s counting. I live in the moment... I will give a full update ASAP. I am still figuring out the best way to utilize the ketamine. However it is helping a ton as well. I personally have a super high tolerance to most anesthetics. Therefore. My starting concentration although a moderate dose will probably be bumped up a bit after discussing my usage and results w my doc. I promise I will make a more detailed post ASAP. I think ketamine should be a weapon in the arsenal to treat uncontrolled CH. I don’t find it intoxicating unless I take a big dose 20+ sprays... 10 sprays at (50mg/ml or 5% solution) and I start to get some help. As it is a dissociative (I have not dissociated yet...aka k hole). At 4-8 pumps I feel mild distraction from the CH. usually enough to take an edge off. However if I have down time and a bad CH I will go to 10-20pumps. This is not what I recommend for everyone! If you do try it. Start low and go slow is my advice. Most people do not enjoy being dissociated from what reading I’ve done on recreational use... but for a kip ten I say bring it on. I have only had one Kip 10 since starting it =-). BBL with more info. looking forward to seeing y’all in Dallas.
  7. 5 points
    Quick reminder, pleaae share on the forum so those who cannot attend can learn. Thanks in advance and have a wonderful conference!
  8. 5 points
    Clusters do not cause any known physical damage. Of course each clusterhead has their own personal hell of psychic damage which could range from mild depression to defiance to PTSD-like manifestations. Mental health challenges can cause legitimate physical problems. The other issue becomes imaginary thinking. We spend lots of time trying to figure these things out (triggers, weather, meds, habits, etc. its easy to try and explain every anomaly we experience in the context of clusters but its often unrelated.
  9. 5 points
    Damn it Denny....you mean I have to lug a thumb drive all the way to Dallas??!??! What kinda rookie operation is this?
  10. 5 points
    This is a problem that is nonsensical until you subscribe to Batch's "follow the money theory". I too ascribe to this after a career dealing with nonsensical policies. "when things do not make sense, follow the money. The disallowing of oxygen therapy for treating cluster headaches smacks in the face of well done science. Many new medications, devices and implants have been approved for reimbursement with a relative paucity of evidence compared to oxygen therapy for treating cluster headaches. It is unfair, irrational and inhumane. The cohort of cluster patients needing oxygen is very small and most meds used to treat or prevent attacks are off patent so I do not believe the resistance is coming from industry. It is my belief the problem is government agencies themselves. This is because Oxygen therapy is largely uncovered by government programs and there are millions of oxygen users out there with COPD, respiratory failure and the like. If CMS were to set a precedent by covering clusterheads then they would be on the hook for everyone else on O2 which is a huge spend. Regardless of the reason this denial continues it sucks and I hope the decision makers spend a long time in head with the beast. Then again I would not wish the pain on my worst enemy.
  11. 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
  12. 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
  13. 4 points
    Ddikevin

    Emgality for episodic

    I am a long time episodic sufferer and normally had the two cycles spring and fall. In the last couple of years I had been using prednisone taper and sumatriptan as needed. In the beginning the prednisone worked quickly stopping the headaches within 48 hrs but now it seems like it takes a week or more for it to stop them . This in turn has increased the amount of Triptans I have been using. I noticed a big change this year as I am now in my 4th cycle and it seems like I only get a month break between cycles. I had a discussion with the researchers at Yale and they said that the prednisone and triptan use could be increasing the amount of cycles that I am experiencing. I had heard of Emgality and got a prescription from my neurologist. I got two injectors and stored them in the fridge and will receive one injector every month after that. Maybe two weeks after receiving emgality I felt the shadow signs of another cycle so I decided to try it. I did the two injections and the next day felt very tired. But for nearly two weeks I didn’t have any shadows. One or two days before I had to refill the prescription I had a mild attack lasting 5 or 10 min, very bearable. I refilled the prescription and took another injection and now for a week or so the mild attacks come in the morning and after I go to bed. I am hoping to ride this one out without steroids or triptans and keep taking the Emgality every month as a preventative. I will update here as this cycle continues on Emgality.
  14. 4 points
  15. 4 points
    ...oops...forgot to mention...for those of you fortunate souls who will be conferencing...absolutely do not forget your mask and regulator (been there!...so did the redneck bag...read up on that just in case)...do NOT check in your bag (sometimes I think the airlines lose stuff just for fun)..and be prepared to explain "WHAT'S THIS!?" when TSA spots these items in your carry-on x-ray. The ONLY time I ever got stopped and questioned in a screening check...…………..they were cool when I explained.
  16. 4 points
    @Dana129 I wish you didn't worry so much. My chronic cluster headaches began without warning. Three every night, all kip 10s. When I saw the videos, I was in auch a state of denial 'not me'. Well it was me that accidentally shoved my head through the wall, bruised my body terribly but didn't notice till the next day etc. I had the 'fear' of attacks only briefly because they were coming & I had nothing to stop them back then, fear soon became pointless. Look at me now, pain free sleeping through most nights. I still have Complex Chronic PTSD (unrelated to cluster headaches) and the treatment is helping that too. See? Hope is all over this forum! Edited to add: If they ever return, I know how to stop them.
  17. 4 points
    Dallas Denny

    New to the group and suffering

    Welcome to the community Willy!! Sorry you had the need to join us! Good to see that you have O2!! I'd suggest that you clue your doc in on the sumatriptin (imitrex).......for the vast majority of clusterheads the pills just don't work fast enough.....the imitrex nasal sprays work a bit better, but if you have to resort to the use of trex, the best option by far is injections. The best thing you can do in my opinion is read up on the anti inflammatory vitamin D3 regimen in our files section......you can start on it immediately once you have acquired all of the co factors but you will need to have some bloodwork done to establish your baseline levels.......we've watched this regimen work in folks life with ch for closing in on 10 years.....works well for about 75 to 80% of folks to either reduce the frequency and intensity of their hits or become painfree!! The originator of the regimen, Batch, is active on the forum so ask any questions you might have and someone will have an answer! The last option is busting and you'll also find extensive info on that in the clusterbusters files or the share your busting stories section of the forum. Dallas Denny
  18. 4 points
    https://hub.jhu.edu/2019/09/04/hopkins-launches-psychedelic-center/ The cluster community has a special role in this type of situation. Most conditions psychedelics are believed to be helpful in treating fall under mental health which is complex and multifaceted. Cluster headaches are more of a medical "condition" and while individual impact and perception differ; somehow a medical diagnosis is more acceptable than a mental health diagnosis. Now anyone suffering from mental health issues knows that is a pile of crap at the end of the day any road that gets these substances rescheduled is a road many will benefit from. So if you get a chance to participate in a cluster headache study using psilocybin or other psychedelic take advantage of the opportunity. The pain you save may be your own and many others....
  19. 4 points
    spiny

    CH without pain?

    CH is an odd beast. Any area in that quadrant of your head can be subject to pain as the Trigeminal Nerve serves as the major nerve for that side of your head and face. So, a lot of territory to hit. Just a bit to keep in mind. You can have low level Ch's or major ones. You will swear that a particular tooth is killing you. It gets removed, and the pain remains. You can get an ear ache, sinus pain, jaw pain, and on and on. That is why so many have had teeth pulled and sinuses reamed out surgically. So, the pain can be very different at different times. I had a cycle once where every hair follicle in that quadrant hurt constantly. Shampooing was a real bear for about 5 months. Most experience the worst pain at the back of the eye. Others get it in the temple. For me, it is almost always the temple. It feels like my head is being squeezed in a vice while a railroad spike that is red hot is pushed into my head through my temple. I do think that for many it is constant pain, not pounding or throbbing. Personally I started out Chronic, but with low level pain. Then I got a long reprieve. They returned episodic and blew the top off the Kip scale. A cycle will begin with one hit per night and quickly, a few weeks at most, ramp up to four every night. That takes care of the whole night. They last 2.25 hours untreated and there is a 15 minute break between hits. I sleep from 6am to 8am. After about 6 or 7 months I am not a very nice person. Not mean, just no laughter left. So, I tell off traffic and such. And avoid people when I can. CB is the reason I still can laugh and live. There are ways to manage it so you are a real person again. ATB
  20. 4 points
    In the recent past I successfully trained for an Ironman. Understand completely the post training hit, it robs you of the joy of completing an event. I am strongest in bike and running isnt my thing but the outcomes are likely similar. I found taking salt and magnesium at intervals helped prevent post training hits. Generally most of my hits came at night so sleep disturbances had the greatest impact on training. Busting helped too ( I think). I firmly believe it is best to pursue everything you can and fuck the beast. If you alter your life for the beast the beast wins. Never let a bully win.
  21. 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
  22. 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
  23. 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
  24. 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
  25. 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
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