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  1. 4 points
  2. 4 points

    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

    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
  4. 3 points

    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
  5. 2 points
    Holy f'ing shit.....how could I have been so stupid to miss this for 38 years??????!!!!
  6. 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
  7. 2 points

    The 'driven' gene?

    ...something more basic....."survival".....
  8. 2 points

    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.)
  9. 2 points

    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.
  10. 2 points

    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.
  11. 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.
  12. 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.
  13. 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
  14. 2 points

    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!
  15. 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
  16. 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
  17. 1 point

    Who’s going to Dallas this year?

    Hey fellow clusterheads and supporters. After several people have strongly encouraged me to go to the CB conference, my parents decided to send me this year. I’m a little apprehensive bc I’m going through a M tank a day right now and my CH is at its all time worst. However, it will get me out of the house and submerged in a community of fellow sufferers. Bostonheadachedoc feels that it is important for me to meet other chronics. Most of the CH people I have become friends with and/or have met in person are episodic. I’m not sure it makes a difference we all suffer the same excruciating pain. But none the less I am now booked and looking forward to meeting many of you. So I figured I’d make this post to see who’s going to make sure I at least get to shake your hands. Pain free wishes! Brian
  18. 1 point

    Vitamine D3

    @BatchThanks for the quick response and great information. I'm 32 and I haven't had a full blown attack in 5-6 years (that being the first time ever) and never researched it until now. I was getting some shadows off and on during the end of winter 2018 but again, thought nothing of it due to having terrible allergies year round (which i take meds daily for) and thinking it was just my sinuses acting up. About 4-5 weeks ago i was hit with one after mowing my yard. They seem to be hitting me every 3-4 days (after cardio workouts outdoors and 2-3 nocturnal episodes) and in between those days i'll have shadows come and go. I strive in the sunshine, so i'm always in it whenever possible. My mind/body has already been experiencing a great deal of relief already after 5 days of loading 50,000 and the rest of the supplements (which i've been on for years including your regime). I had no idea how much vitamin d3 meant to our body when it came to therapeutic levels and the knowledge of dosing. This knowledge i've been reading all over the board has been greatly appreciated. I applaud you of your work throughout your years in every aspect. I shall keep up to date after 30 days. Hopefully this rids the beast!
  19. 1 point
    ...nothing to add to that...…………...
  20. 1 point


    I sometimes get very flush during my headache, but almost always get cold on the downside, which is nice because 1 it usually means it's ending, and 2 I am so tired that being cold and kinda pain free, I can stop holding my face and rocking and lay down and sleep!
  21. 1 point

    New need info

    Dana' is right about different things signaling the end of a cycle for different people. D3 regimen (what FunTimes sent you and what you found work, too): http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Frankly, it's very unlikely to help you with this cycle, but it will help a lot regarding future ones. Strongly suggest that you read through this to be sure you're doing all you can right now and in the future: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ OXYGEN, energy shots, Benadryl, melatonin, etc.
  22. 1 point
    Hey THMH, Great answers and assessment. I'll add to your comments. In 2005 after turning chronic, I developed a method of oxygen therapy that supports hyperventilation. It used oxygen flow rates between 25 and 40 liters/minute and resulted in average abort times around 7 minutes and better than 95% effective in terms of successful aborts over total attempts. Abort times this short and efficacy were clearly better than that obtained at a flow rate of even 15 liters/minute. I started posting about my experience with this new method of oxygen therapy on CH.com and was told by many that oxygen flow rates this high was dangerous... Well... As a Navy fighter pilot with over 3000 flight hours in Navy fighters breathing 100% oxygen from takeoff to landing (usually aboard ship) on every flight and at very high respiration rates during high G-Force maneuvers during practice and actual combat maneuvers... I knew oxygen flow rates this high were very safe... or I wouldn't have passed my annual flight physicals with PA and Lateral chest X-rays. In 2007, I received an oxygen demand valve from the Linde Group subsidairy here in the US so modified my initial oxygen therapy procedure and breathing techniques to work with the oxygen demand valve. It worked so well I decided to set up a pilot study to capture efficacy data in terms of time to abort by pain level. We conducted the pilot study of the oxygen demand valve method of aborting CH in 2008 with seven CHers (6 CCH, 1 ECH) each recording the pain level at start of therapy and time to abort for every CH over a period of 8 weeks. In all, they collected data on 366 aborts. This method of oxygen therapy required intentional respiration rates that support hyperventilation roughly equivalent to an oxygen flow rate of 40 liters/minute. The breathing procedure used with the oxygen demand valve method of aborting CH (DEVO2) is far from passive. It's hard work huffing and puffing like a big dog with respiration rates up around 20 inhalation-exhalation cycles/minute at forced vital capacity lung tidal volumes. The initial pilot study protocol called for a week of aborts at an oxygen flow rate of 15 liters/minute with a non-rebreathing oxygen mask as a comparative then switch to the oxygen demand valve for 8 weeks. However, after the first participant completed the week at an oxygen flow rate of 15 liters/minute and switch to the oxygen demand valve, his abort times dropped so dramatically, we scrapped the comparison phase and went straight to the oxygen demand valve phase for the remaining six participants. The primary efficacy endpoint for this study was an abort with the oxygen demand valve in 20 minutes or less. The following graphic illustrates the efficacy results in time to abort by CH pain level. 364 aborts met the primary efficacy endpoint. The two aborts that failed to meet the primary efficacy endpoint involved the same unlucky participant who got trapped away from his demand valve system until his CH had already reached a 10 on the 10-Point Headache Pain Scale. He was out shopping when one CH hit and got locked out of his house on the second. These two attempts were technically no-tests due to the delay in starting oxygen therapy, but I elected to count them anyway. This made the efficacy of the demand valve (DEVO2) method of aborting CH 364/366 or 99.4%. No other known CH abortive is this effective. As you can see, the DEVO2 method also produced CH aborts 3 to 4 times faster than aborting CH a flow rate of 15 liters/minute. The mean abort time for the 364 successful aborts was 7 minutes across pain levels 3 through 9. You'll also notice that the abort times increased with CH pain level at start of DEVO2 therapy. This is reason enough to start oxygen therapy at the first sign of an approaching CH. Regarding the change in CH frequency after starting oxygen therapy, the following chart illustrates the change in CH frequency measured in CH attacks per week over the 8 week period each CHer used the DEVO2 method. We called this up-tic in frequency of CH Re-Attacks for the simple reason Medication Overuse Headache (MOH), also known as rebound headache doesn't really apply to oxygen. MOH are more frequently associated with repeated longer term use of opioids, analgesics, triptans and NSAIDs. In addition, oxygen toxicity is not a factor for the period and total time spent breathing 100% oxygen as a CH abortive at normobaric pressure. The increase in Re-Auttacks (up-tic in CH frequency) up to week 4 appear to be caused by a number of factors including an incomplete abort (staying on oxygen breathing normally for 5 to 10 minutes after the pain stops helps increase the time between CH), speed of abort and relatively short physiological period of efficacy (effects wear off in 30 to 45 minutes after returning to normal respiration rates with room air). If CH triggering mechanisms are still active, CH return in 1 or 2 hours. The decrease in CH frequency between week 4 and week 8 is an interesting phenomenon. We think this is due to vascular toning... In other words, the muscles lining the arteries, capillaries and micro vasculature get stronger or tone up with repeated flexing (vasoconstriction) during DEVO2 therapy. This is similar to doing pushups or lifting weights. The more frequently you do these physical activities, the stronger your muscles get... In short, you've toned them up. Although this up-tic in CH frequency between week 1 and week 4 was irritating, the reduction in average weekly CH pain level and and average weekly time to abort over the 8 weeks was continuous. All study participants viewed this initial up-tic in CH frequency as acceptable given the overall high efficacy and speed of abort using DEVO2. The mechanism of action behind the high efficacy and short abort times for the DEVO2 method of aborting CH involves intentionally hyperventilating with 100% oxygen at effective flow rates of 40 liters/min. This blows off CO2 from the lungs faster than the body generates it through normal metabolism. This elevates blood pH (makes it more alkaline) and that elevated pH increases blood hemoglobin's affinity for oxygen allowing it to upload more oxygen and offload more CO2 more rapidly (Bohr effect). The increase in hemoglobin's affinity for oxygen results in a super-oxygenated flow of blood to the brain at roughly 115% of that obtained breathing room air. This results in a very rapid vasoconstriction of the trigeminovascular system which acts as one of the CH abortive effects. This increased blood oxygen super-saturation also results in Calcitonin Gene-Related Peptide (CGRP), Substance P (SP) and Vasoactive Intestinal Peptide (VIP) being metabolized much faster, lowering their cellular concentrations and that increases the CH abortive effect. CGRP, SP and VIP have all been found elevated in serum concentrations during the pain phase of CH and migraine headache (MH). There are three related factoids to consider. The first factoid is although the numbers are limited, the DEVO2 method and procedure of aborting CH appears to be just as effective in aborting migraine headaches. The second factoid is the latest method of oxygen therapy I developed in January of 2010 involving intentional hyperventilation with room air at forced vital capacity tidal volumes for 30 seconds followed by inhaling a lungful of 100% oxygen and holding it for 30 seconds then repeating this sequence until the CH pain is completely gone results in the same CH abort times (an average of 7 minutes) and efficacy as the DEVO2 method. This method of oxygen therapy consumes one tenth the volume of oxygen as the DEVO2 method. This brings the volume of oxygen consumed per CH abort down from 250 to 300 liters to 25 to 30 liters. That works out to a reduction in oxygen cost per abort from one dollar/abort with DEVO2 down to roughly 15 cents/abort with this new method. The third factoid... The anti-inflammatory regimen with 10,000 IU/day vitamin D3 plus the vitamin D3 conutrients is so effective as a CH prophylaxis, my collection of oxygen therapy hardware costing more than $2,500 has been sitting in a storage room, untouched since October of 2010 when I started this vitamin D3 regime. The following graphic illustrates the favorable response rate by day after start of regimen. I estimate over 2000 CHers and many migraineurs have started this regimen since I began posting about my experiences with it on CH.com in December of 2010. This is a conservative estimate as readers of my webpage at the following link http://is.gd/clustervitd on VitaminDWiki.com have downloaded 17,727 copies of the anti-inflammatory regimen treatment protocol since 21 January of 2017. That works out to a little over 22 downloads a day. I'd also like to point out the anti-inflammatory regimen works well with busting. In fact, when taken together they appear to have a synergistic effect in preventing CH. So there you have my 75 cents worth of comments on oxygen therapy... I welcome any comments. Take care, V/R, Batch
  23. 1 point


    Dear BostonHeadacheDoc, It is wonderful to have a health professional working on our behalf. Thank you!! I would love a copy of your review and will be PMing you if that is okay. I have migraines but have found the busting, vitamin D regimen and other suggestions found in this website to help far more than any pharmaceutical I had been prescribed to this point. I am wondering, too, if Ketamine might be helpful for migraines. I am thinking yes but am not hopeful that any physician in my area would prescribe this for headaches. I would like to show your review to my PCP though, maybe, some day, perhaps.... Carlos, I love your posts. They are consistently well thought out, interesting informative and funny, too. And hey, thanks for sayving the "verse!"
  24. 1 point


    I have been amazed by the Ketamine. So many doctors seem to be so scared of it, and the more experience and research I do with it makes me not understand why. Truthfully, I blame Nancy Reagan and her damn drug war, but I tend to blame her for a lot of things. Ketamine can be psychologically addictive, but it is not physically addictive. I have taken ketamine at times daily for two weeks straight. When I stopped I was very surprised to find that the only withdrawal (if you can even call it that) was that I was little cranky for a day or two. Nothing a bong hit or two couldn't help. Another thing that is a amazing is it's short duration of action. Most times the amount I take does not inebriate me much and I can go about my day just fine--when I have had heavy hitters and I go for a higher dose it can be pretty intoxicating but it really only lasts about an hour. You don't get stupid like alcohol or opiates either--you are very aware of the intoxication and you don't want to do stupid things like drive a car or french kiss your cousin. I will say this though, a heavy dose is just weird. I have done a lot of drugs and the only thing I could compare it to is a really strange nitrous oxide trip. As a "dissociative" it can "distance" you from things, I don't know how else to put it. Even when it does not work completely for me and I switch to the big guns like Imitrex, it still seems like a lifesaver. Sometimes it can take 20 min for a shot of trex to work for me--and anybody with clusters knows that 20 minutes is just to long. The Ketamine distances me and tones down the pain, making it a hell of a lot easier to wait it out. So many Doctors are willing to prescribe narcotics that you build tolerance to rapidly for pain, cause physical addiction, constipate the hell out of you, lead to depression and withdrawal...the list of negative effects of the opiates is ridiculous (and yes, I still use them from time to time) For regular, non cluster pain, the combination of Ketamine and opiates seems to be a much better choice than just regular opiates--mostly because the pain relief is more complete and you can take less of the physically addictive opiates. When I was having some really painful teeth work done I was going for the hydrocodone and Cannabis mnixture (another great thing that can lower your needed intake of Opiates) and it worked all right but I was still in a good bit of pain. This seemed like it was eventually causing a cluster which I would take my Ketamine for--and the tooth pain would just disappear. I don't think the Ketamine alone would do it at the low doses I was using, but it seemed like the combo kicked ass. Here is a link to "Postoperative Ketamine Can Reduce Morphine Consumption and Nausea" http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2605142/ One study on Intraoperative ketamine showed that "We have demonstrated that intraoperative preventative ketamine reduces opiate consumption in the acute postoperative period by 37% in opiate-dependent patients with chronic pain who are undergoing painful back surgery. In addition, it seems to reduce pain intensity postoperatively in the PACU and at 6 weeks and to reduce consumption of morphine at the first postoperative visit. The findings of this study add considerably to the body of literature pertaining to the efficacy of ketamine in preventative NMDA receptor antagonism." http://ether.stanford.edu/Ortho/Intraoperative%20Ketamine%20Reduces%20Perioperative%20Opiate.pdf To me, it sounds like if a Cluster patient has tried just about everything and ends up on Opiates, it would be a damn good idea to mix ketamine in there too. Another thing about the Nitrous oxide--it is in the same class as Ketamine (NMDA receptor antagonists) so it's not that strange for them to have similarities. A big thing to be aware of though is that for me they seem to work synergistically. When I went to the dentist with a cluster I took a good 10 sprays then sat down and had them put the nitrous mask on--within a few minutes it was complete interdimensisional travel. Many of the specifics are a little fuzzy, but I could see all the dimensions of the verse (as I call it, because the Uni-verse would imply a singular space instead of the infinite unbounding cosmos that I was experiencing) splayed out like a deck of cards being shuffled. I could see into all the dimensions and I could see that my own dimension, the one where I was having a crown done in a dentist office was going downhill fast. I knew that if I didn't intervene, everything everywhere was going to dissolve into nothingness. Then I retreated to being a very small, shy child in the corner of a very dark room. Part of me was urging this child to DO SOMETHING! SAVE THE VERSE" and the little child would reply, "but I'm scared...I don't know if I can" Eventually convinced that every cosmos everywhere was about to be completely annihilated I slowly put the effort into raising my hand. It was like the air was complete thick tar, it might have been the most effort I ever put into anything. As it slowly got into the air I felt more and more exuberance---"I'm SAVING THE WORLD!" About this time was when the dental hygenist looked in and found me sitting calmly with my hand in the air. She came in and asked me if I was ok--to which I gave no reply and stared at the wall as if I had no idea she was there. They promptly stopped the nitrous and I came back to earth, aware of the unbelievable beauty and strength of the world, the verse and myself. I was not aware until a few minutes later that I was in a dentist chair with a couple of worried hygenists looking in at me. Then I started laughing hilariously and asking them "what the hell just happened" To which they replied "I have no idea" The rest of the appointment was kinda rough on me and the dentist, mostly because no one had any idea that I had saved everything everywhere (You're welcome folks, just another day's work ) and no one had any idea why I kept erupting into maniacal laughter. So the lesson is--be real careful with the nitrous ketamine combo--unless of course, you're into that kinda thing. It was pretty cool. -Ricardo BTW--thanks Doc, for all your input. Your presence on here could make a big difference for the folks that want to try this and are meeting resistance with their doctors.
  25. 1 point

    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