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  1. 3 points
    This file will give you an overview of how CH is treated. It includes a brief description of the busting protocol (the same description of busting that is under the blue banner on each page, "New Users ..."). https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ As Vipul says, oxygen and the D3 regimen are things you should be doing. There are other things described in that file that might also help you (Benadryl, caffeine, higher doses of melatonin, "brain freeze"). Most of us here are not persuaded that microdosing is an effective way to treat CH -- you probably have to get to some threshold dose for it to be effective. I don't think that the Mirtazipine is likely to have brought on your attacks, but others might have a more informed opinion about that. Some antidepressants will block the effects of busting, but I don't know about Mirtazipine. It might not seem much like a happy birthday, but I can say that finding this site with its generous and helpful people is a happy thing for you in the longer run.
  2. 3 points
    Total crap. Reads like a troll. Any surgeon who claims 100% +/- 20% cure is disingenuous and dangerous. Any surgeon who is “the only one’ to offer a procedure to treat a condition should be held in the highest suspicion. If you are for real (doubt) then it’s far more likely your relief was from anesthesia medications than a scalpel. Happy you are pain free but don'r credit a charlatan for your relief. Experience with this particular duck is well documented in this and other forums and it’s not positive. To those who are new to this site please do not get victimized by this BS. You are vulnerable because of this horrible condition don’t become a victim.
  3. 3 points
  4. 3 points
    If they didn't comeback we wouldnt be here.
  5. 3 points
    Here ls a method I used with my Neuro. He always has me seated toward the window light and then does the pupil test. Well, they contract at about the same rate. Two years ago, I turned off his lights and told him to look at my pupils. The CH side does not dilate properly in low light. And it takes quite a while to return to almost normal post cycle. He was giving me a bit of a hard time and wanting to treat for migraines. That changed his mind. The other pupil was huge and the CH one was 1/2 the size of the normal one. 'Oh, you do have Horners!' Ah, yes I do. My eye does not droop because I exercised the muscles to hold it open so much one year that I now have brow wrinkles on that side only and the eyelid is more wide open than the other one! It had gotten so bad that I could not read without killing my neck looking down. So, it became a daily project. He also was running with the normal runny eye, runny nose bit. Well, now I seldom get that, but the CH side of my head sweats profusely during a hit. Try it at home first. If you are still having CH, it should show up that way. It beats me how they just look at contraction and not expansion, but they do. And there is the old Nitroglycerin trick. They use it sublingual for Angina. But, for a CHer, it will bring on a hit. Not a migraine, a cluster. Painful way to go, but provides proof. She needs to rethink or catch up on her CH knowledge!!!!
  6. 2 points
    A 10 for me "Why doesn't it just kill me?" When begging is pointless.
  7. 2 points
    G'afternoon microdosing Definitely agree with Chfather that the antidepressant did not trigger a cycle for you.....and, I'm also not convinced that microdosing is an effective treatment for clusters. As Vipul mentioned above, high flow oxygen therapy and the D3 regimen are your best bet in managing your clusters. As to Mirtazipine, most, if not all anti depressants in the SSRI class are contraindicated when it comes to busting due to the risk of serotonin syndrome....a quick Google search shows the following: warnings Serotonin syndrome warning:Mirtazapine can cause a life-threatening condition called serotonin syndrome. Your risk may be higher if you also take other drugs that have similar effects as mirtazapine. These include antidepressants or triptans, such as sumatriptan and zolmitriptan. Symptoms of serotonin syndrome include agitation, hallucinations (seeing or hearing something that isn’t there), confusion, trouble thinking, coma, coordination problems, and muscle twitching. They also include stiff muscles, racing heartbeat, high or low blood pressure, sweating, fever, nausea, vomiting, and diarrhea. Call your doctor right away if you have these symptoms. Besides these dangers, the therapeutic effects of busting may well be blocked by the antidepressant. Best wishes Dallas Denny
  8. 2 points
    Hello, and am so sorry to hear about your condition. From what I've learnt, an lsd busting dose needs to be about half of a regular dose. That would be around 50 to 60 ug. Also you need to do it 3 times 5 days apart. Your brain a few days to be receptive again. RC seeds have worked for me. The D3 regime is worth doing. And ginger works great for shadows. Many swear by high pressure O2. Have no idea how your depression meds may interact with busting. You're in the right place and you will get enough advise to help you thru this. I was where u are just 2 months back. You can bust the beast. Pain free wishes to you. Love Har Har Mahadev
  9. 2 points
    Manfred, His success rate is definitely not 99%. He and his son have come here several times trying to sell their supposed cure. Meanwhile there have been lots of people that are poorer and disfigured because of cutting nerves in their face and head. CH goes into remission for no reason at all some times. I'm glad you're pain free, but please don't post the word cure on here, else you're open to ridicule. Seriously there have been entirely too many people posting quack cures, non of which have actually been proven as a cure. Cheers, K
  10. 1 point
    Folks, I´ve had it. As most of you are aware, Dr Matthias Karst from the MedFac of Hannover has conducted a succesful trial using BOL-148 (2-bromo-lsd) aka the non-hallucogenic variant of LSD on 5 patients last year. It is as simple as 0,03 mg/kg 3 times over 15 days and then once again after 6 months for a PERMANENT painfree solution to Cluster Headaches, either episodic or chronic. I have written the following open letter to the top 5 chemical research companies with pharmaceutical affiliations and several Spanish producers. personal data censored. L.S, My name is ***** and I am a resident of Jávea, Spain. I am part of a global group of both episodic and chronic Cluster Headache patients which consists of individuals of all walks of life, ranging from students to engineers to housewives etc. Cluster Headaches (CH) is a highly debilitating condition for which currently there is no official cure, and is commonly recognised as the most painful condition a human can experience. It absolutely destroys the patient´s life both professionally as well as family life. More background can be found here: http://en.wikipedia.org/wiki/Cluster_headache I am writing you today to draw your attention to a recent ground breaking clinical trial by Dr. Matthias Karst, M.D., Ph.D., Professor of Anesthesiology of the Hannover Medical School in Germany, where 5 patients where dosed with the non-hallucinogen variant of LSD called BOL-148 aka 2-bromo-LSD (2-BROMO LYSERGIC ACID DIETHYLAMIDE). The study produced astounding relief to the participants and holds hope for the 0.1% - 0.3% of world population who suffer from this rare condition. The Karst study (The non-hallucinogen 2-bromo-lysergic acid diethylamide as preventative treatment for cluster headache) can be found here: http://www.clusterheadaches.com/yabbfiles/Attachments/CH_-_BOL.pdf I am part of a large group of CH sufferers who have joined forces online and do not want to wait for many more years with this condition that has shattered our lives and has driven many to suicide. We feel that the number of CH sufferers is simply too small for any company to develop medication on a larger scale because there is no substantial market. Therefor I have decided to take action. This letter is a result, we are asking you, as a reputable chemical company, the steps required to obtain BOL-148 and to start the process of getting to the point where our group can benefit from the much needed Karst discovery. Dosage will be strictly under medical supervision on individual basis following Dr. Karst dosage of BOL-148 (0,03 mg/kg). Please specify your requirements for producing and providing medical grade BOL-148. Please specify which channels are needed. Our group can get: - Medical certifications - Cooperation from local pharmaceutical companies (as intermediate if needed) - Cooperation / References / Prescriptions from medical doctors (again if so desired) We will provide any waiver(s) needed to your company upon request. As you may understand, some CH sufferers with a chemical background have already chosen to choose a path of "illegal" BOL-148 production as well as the (illegal) use of LSD-25, LSD-50 and Psilocybin containing seeds, herbs and mushrooms with all risks involved, which, however promising, we must reject. The group which I am part of wishes to obtain the proven method in the form of the non-hallucinogenic chemical BOL-148 from a trusted source like your company - if at all possible 100% legal - and keep other options only as a last resort. Your advice and opinion will be very highly valued. Sincerely, ********* (email address) group websites: clusterbusters.com clusterheadaches.com chhelp.org (non-affiliated supporter) This is a bold letter, but desperate times require desperate measures. I have super charged the letter here and there, but it is needed to draw attention. I currently have a proposal for the production of BOL-148 by a Chinese company - one of many I have written to - but I am not comfortable with the COA report. (or lack thereof). I want the medical grade quality with >= 99% purity. One way or another this is going to happen, even if I have to setup a lab myself with some chem students. I am looking for a generic solution for all of us, and in doing so I no longer have fear nor respect for the governing bodies and am fully committed to this path I have chosen. Even if this means myself shipping out free doses of BOL-148 to everyone who needs/asks for it. I KNOW for a fact I am going to get my dosage, one way or another, if I can solve your pain too depends partially on you and your responses. I gather a doctor needs to become involved one time or another if you are a U.S. resident because of FDA restrictions etc. Well I can tell you here and now if I can lay my hands on 2000cc of BOL-148 I will ship them out to the U.S. as perfume if I have to. They will have to arrest me if they want to stop me, and you can rest assured this will attract media attention, I´ll make sure of that. All I ask for is your support in this endeavour. Chemists/Medical staff in here step up please.
  11. 1 point
    Also the 1-10 scale is subjective, if you have, as far as you can recall, never felt that level of pain before, it is the most pain you can ever recall feeling, that is a 10. 10 is described as or referenced by "The most pain you have ever felt" not do you think you could feel more, just the most pain you have ever had up to that moment. Kip scale adds some more detail and thresholds, but it does just boil down to "Is it the worst pain you have ever felt". For my perspective, at one point in my life the kidney stone I had and passed would have read a 10 to me, but thanks to these lovely things and a reshuffling of my pain scale it would now fall around a 5 or 6. So until something hurts more, the most pain you have ever had is a 10, you feel more eventually, that becomes the 'new' 10 and the old '10' becomes a 9. Anecdotally, I have also begun using two scales for medical issues. My cluster scale for cluster appointments, neuros etc. But I wipe cluster pain from my scale if I go in with say stomach issues or the like, otherwise your pain scale is wildly skewed compared to what a triage nurse would understand. You tell a triage nurse kidney stone pain is barely a 5 they look at you like you are off your rocker. For the op I have been somewhat lucky as full on "10"'s are a once or twice a week occurrence, the rest falling below 10. The ending of this winter where I live has been pretty chaotic, cold, warm, hot, windy, chinooks, snow and cycling pressures like nuts, so the other day I got my first 3 "10"'s in a row with the rest that day being just below that. My attacks, lucky me, go about 2.5 hours, it seems the 10's calm a bit after 1.5 hours but that could simply be exhaustion and a kind of mental numbing to that amount of pain over that amount of time. so for me that would make it 7.5 hours of the most pain I have felt in my life, with maybe 1.5-2 hours pain free split amongst it.
  12. 1 point
    Hi Dlions20, Occasionally we are seeing people here in their 70s asking on how to treat their first CH cycle after a remission of sometimes 20-30 years So I would say, never consider this thing as "done" or you can be in for a nasty surprise later on. And when you are pain-free, always consider it as a remission and enjoy that time :) siegfried
  13. 1 point
    Hi Ihdc, There is definitely an effect that both have on each other. Migraine is well known to imitate a co-existing TAC and can do that damn well. For 8 years I have been diagnosed with CH but the specialists recently have revised it to Chronic Paroxysmal Hemicrania (CPH) and I also have migraine since I am 12 years old. So even I am a man, I am keeping very much on the female side of the headache spectrum Since a few months, I am now under treatment with one of the most renowned CH experts in Europe and he told me this is a typical pattern when migraine and CH are co-existing. It can even go that far the patient can not know the difference anymore between a CH attack and the migraine imitation. That is more or less my case as well. Even a high doses of indomethacin stops my attacks completely, I am absolutely not better off as the migraine keeps coming and is then just an imitation of the CPH. Exact the same pain, it goes not so high in pain level (max 7 while CPH can easily go to 9/10) but the big difference is that the CPH are only 5-10 min attacks while the migraine can last for hours and hours. I can imagine that your symptoms are very much standard which is that the migraine follows the pattern, cycle of the CH. I know it's a damn mess. People who have only one (migraine or TAC) can not imagine what it is to have both... its really unlucky and we have to deal with it the best we can Good luck ! siegfried
  14. 1 point
    ...very valid question...and I wouldn't limit it to physiological...there are probably elements of emotional, mental and spiritual involved also... ....I was the caregiver for my Mother in the last 3 1/2 months of her life...it occurred right in the MIDDLE of a regular/reoccurring cycle....and I remember saying "Lord, please...I can't handle BOTH of these at the same time!"....then making plans for TRYING to do exactly that.... ...whether attributable to spiritual faith, emotional self preservation, stress hormones (def a preventive but minimally sustainable) or something else didn't matter then, but has intrigued me ever since. The cycle stopped IMMEDIATELY... and failed to reappear the expected and "normal" 2 or 3 more times for the next 6+ mos.... until I was finished with her estate. slap me for stupid, but after 20 yrs I thought they were gone forever...nope....but what a remarkable and timely window I am forever grateful for... ...there is way more to dealing with this ailment than just treating a wonky hypothalamus...we haven't even begun to tap the potential of the human mind......and I continue to believe that much of the battle simply involves the "attitude" we approach with... best jonathan
  15. 1 point
    I don't know if this is for BC/BS writ large or just FEP. But an FYI: Emgality for cluster headaches was NOT covered under this very large plan.... but last week, that changed. If you have been turned down and presented with an insane bill, they'll now cover a big chunk of it. (I am guessing here, but based on my conversations with the insurance company and the documents reviewed, I think that BC/BS approved the migraine Emgality dosage bc FDA approved that first. The CH approval from FDA came later and the insurance coverage rules just hadn't caught up yet. I was frustrated that I could get shots for migraines, but the right dosage for CH - 100mg/3x - wasn't available. Same drug, different dose, different DX, different insurance response. Again, though, that's changed. We did have to have my doc file a form with the insurance company to confirm that I needed this drug, but once that was done, they paid the majority of the cost.) I hope that might help anyone who tried and gave up...
  16. 1 point
    Thursday 12 March 2020 06:30 PDT The markets around the world are in full panic mode. US Markets were limit down yesterday (stopped trading for 15 minutes if the S&P goes down by 7%) and are already 6.5% down this morning at the opening bell. (That just happened at 06:36 PDT, 6 minutes after the markets opened. ) There are a couple interesting news items breaking that the lame stream media won't cover. The first centers on Italy where epidemiologists have found Italy Is second country with coronavirus outbreak preceded by a tuberculosis epidemic. China was the first... There are a couple implications here. In Italy, most of the deaths have occurred around areas heavily populated by a recent influx of immigrants. They've been testing with the RT-PCR COVID-19 test probes, but not for tuberculosis so it's unclear if these deaths were due to the COVID-19 novel coronavirus or TB. In either case, the pneumonia caused by the coronavirus and TB are both treated with vitamin D3 and Vitamin C IV infusions. That means it isn't as bad as it appears here in the US. As of 14:40 yesterday PDT, 23 of the 30 deaths in Washington state and of the 38 deaths in the US, occurred among residents of the Life Care Center nursing home in Kirkland, WA. That also means as the infection rate goes up, the death rate will not go up nearly as fast. Again, South Korea is the best indication of the death rate at 0.8% for the last three days as they have no shortage of the RT-PCR test kit probes for the COVID-19 novel coronavirus so their infection numbers are likely much closer to the actual. The other good news is Dr. Oz was on Fox news Wednesday and let the cat out of the bag by saying taking vitamin C and vitamin C3 can help prevent and also treat a COVID-19 novel coronavirus infection. He said it sotto voce and the dose was too low by our standards... but he said it on TV! Dr. Brownstein has an excellent article on being ready for the COVID-19 novel coronavirus that sounds very similar to what I've been saying. You decide. Coronavirus VII: We Are Ready and You Can Be Ready Too! All for now. And yes, my hair is doing just fine and the Dow is down 2,000 points and oil is at $30/bbl. Take care, V/R, Batch
  17. 1 point
    Hey Mark, Thank you for your service. The Redneck Reservoir bags work like a champ with aborts running around 7 minutes with the procedure outlined in my previous post. I made the one shown in the photo while salmon fishing in Pelican, AK, a fish camp with population 76 in the winter so there are no medical oxygen suppliers. Fortunately, there are lots of welders and plenty of welding oxygen. I made up two such Redneck Reservoir bags last June when an allergic reaction to mold spores kicked me out of a CH remission that had been running for over a year CH pain free. I filled these bags by sticking the tip of a cutting torch in the plastic bottle and turned on only the oxygen. It took 4 days loading vitamin D3 at 50,000 IU/day plus Benadryl at 25 mg every four hours throughout the day to stop the CH beast from jumping ugly. Even with the CH hist coming at night, they did not stop me from salmon fishing during the day... Take care and please keep us posted. V/R, Batch
  18. 1 point
  19. 1 point
    Good thing you ordered the Cluster O2 mask (bigger bag), you may need to go to a higher flow regulator. Many of us use minimum 25 lpm regulators from W.T. Farley Amazon etc.
  20. 1 point
    Interesting topic clusters and migraines. Tony Only showed me the results of a Facebook survey of 252 CHers in Finland. 115 of them suffered from both CH and migraines. That sounds high by US standards until you realize half of Finland lies above the Arctic Circle and that gives new meaning to the value of cutaneous vitamin D3. As a side note, Finland ranks second to the US in the number of participants in the online survey of CHers taking the anti-inflammatory regime. That means a lot of the CHers with Migraines there in Finland are taking the anti-inflammatory regimen. S'werkin for them. Take care, V/R, Batch
  21. 1 point
    I was just diagnosed with cluster headaches this week. I worked with Dr. Solomon at Wright State Physicians.
  22. 1 point
    Hey Spiny, Good on you. A caller on Rush Limbaugh today said a 2008 study of people with Schizophrenia were given large doses of vitamin D3 and none of them contracted the flu for over a year. I checked clinicaltrials.gov. They were given 50,000 IU/week of vitamin D3 (an average of~ 7100 IU/day) for 3 months. That makes my point about taking the anti-inflammatory regimen in spades! A long-time friend and fellow fighter pilot asked about putting the CoVid-19 pandemic in perspective, so here are some facts and figures that do just that. Comparisons: Every year an estimated 290,000 to 650,000 people die in the world due to complications from seasonal influenza (flu) viruses. This figure corresponds to 795 to 1,781 deaths per day due to the seasonal flu. SARS (November 2002 to July 2003): was a coronavirus that originated from Beijing, China, spread to 29 countries, and resulted in 8,096 people infected with 774 deaths (fatality rate of 9.6%). Considering that SARS ended up infecting 5,237 people in mainland China, Wuhan Coronavirus surpassed SARS on January 29, 2020, when Chinese officials confirmed 5,974 cases of the novel coronavirus (2019-nCoV). One day later, on January 30, 2020 the novel coronavirus cases surpassed even the 8,096 cases worldwide which were the final SARS count in 2003. MERS (in 2012) killed 858 people out of the 2,494 infected (fatality rate of 34.4%). How contagious is the Wuhan Coronavirus? (Ro) The attack rate or transmissibility (how rapidly the disease spreads) of a virus is indicated by its reproductive number (Ro, pronounced R-nought or r-zero), which represents the average number of people to which a single infected person will transmit the virus. WHO's estimated (on Jan. 23) Ro to be between 1.4 and 2.5. Other studies have estimated a Ro between 3.6 and 4.0, and between 2.24 to 3.58. Preliminary studies had estimated Ro to be between 1.5 and 3.5. An outbreak with a reproductive number of below 1 will gradually disappear. For comparison, the Ro for the common flu is 1.3 and for SARS it was 2.0. My take on all this remains the same. My hair has yet to catch fire and we’re all taking the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3 or a capsule a week of the Bio-Tech D3-50 50,000 IU water soluble vitamin D3. We’re also taking 2 to 4 grams/day of the liposomal vitamin C. As you’ll see in the following charts, the spread of the CoVid-19 continues. CDC now says it’s WHEN not IF it spreads across the US. It’s the blue fog of war and what we don’t know that causes the most angst. For example, we know the seasonal flu has an endpoint usually when the Spring and Summer sun comes out and the UV in sunlight attenuates viral aerosols and surface virus drastically lowering the rate of infection. As the CoVid-19 causes an infection spread by aerosols and close personal contact like seasonal influenza, I suspect we will see a drop in the rates of CoVid-19 infection starting in late April to early May depending on the latitude and elevation where you live. That is just a SWAG on my part. SWAG=Sophisticated Wild-Ass Guess. On the brighter side there appear to be some beneficial outcomes as a result of the CoVid-19 pandemic. Supply chain managers are now starting to source needed supplies from here in the US and US suppliers are ramping up production. Nowhere is this more important than the medical and pharmaceutical supplies as most of the Rx medications are presently manufactured and packaged off shore in China, Myanmar and Vietnam. There are three RCTs in progress using a vitamin C IV drip to treat pneumonia and other life-threatening conditions arising from CoVid-19 infection. The results from these studies will be HUGE as Big Pharma will not be able to blow them off. The equities markets stabilized today and it appears movements are being generated by Day-Trader/Hedge Fund managers. They wait for a morning gain the sell short and buy back early the next day. Now for a few charts on the CoVid-19 pandemic from WORLD O METER at the following link: https://www.worldometers.info/coronavirus/#repro The first two charts show total rate of CoVid-19 infection (linear and logarithmic) and rate of CoVid-19 infection outside China where South Korea has the most (linear and Logarithmic.) The slope of the curve appears to be flattening - not great a good sign.. The slope of the curve appears to be increasing - Not a good sign The following chart lists death rate by age. This is about what we expected last week. The following chart lists death rate by comorbidity. Again, what we expected last week as these comorbid conditions tend to insult/weaken the immune system. The take away here is outside China and Korea, the CoVid-19 death rate is very low. That is a very good sign. There still remain unanswered questions like is China giving us the real story and not reduced numbers. Unfortunately, I have the same question about the CDCs numbers as there have been very few genetic tests for the CoVid-19 infections in the US. Moreover, the CDC limits these tests to people suspected of having the CoVid-19 infection who had either traveled to China or who were on the cruise ship quarantined in Japan. The CDC also shipped out defective CoVid-19 test kits that give false positive and false negative readings so are useless. Now they want $2.5 billion to develop a CoVid-19 vaccine…. For thems that follow things like this, do any of you recall the Zika scare from 2016? The CDC was given $2 billion to develop a Zika vaccine… no Zika vaccine delivered to date and still no shrunken Zika heads to be found. What did they do with the $2 billion dollars? Hmmm… The way I see it, Big Government Bureaucrats are not to be trusted… Need I remind you about the deep staters at FBI and DOJ? Bottom line... Keep taking the anti-inflammatory regime and at least 2 grams of vitamin C/day. If you're not taking this regimen... you should. An ounce of prevention is worth a pound of cure... Is 50 cents a day too munch? Take care, V/R, Batch
  23. 1 point
    15 LPM wasn't cutting it for me so I bought this regulator, very much recommended.
  24. 1 point
    I just switched my Amazon Smile account recipient to be Clusterbusters Inc. Thank you for all you do for us.
  25. 1 point
    I am with you in any way. I have often myself what I would pay to end my daughter's headaches safely, permanently, and 100% legally, and the answer is . . . a whole lot, whatever the effect might be on my retirement savings. At the same time, I'm not sure that sending this letter individually would matter much . . . aren't there connections in the CH world, even at this small sample of it, to people who might care if they really understood? Gosh, I'm thinking of some people I know who might be able to help. Can this campaign be organized in some way? (Am I jumping the gun? Isn't Entheogen trying to move this forward, with a profit motive? www.entheogencorp.com Are they the right ones to contact with offers to help???) At his blog, the Yale Medical School guy who has done a lot to try to gain attention to the busting tactics supported here, wrote this: >>>My question to my readers is–why aren’t you out picketing? Cluster headache is four times as common as muscular dystrophy, I kid you not. Cluster headache is as common as multiple sclerosis. Yet Jerry’s kids are out there raising $60 million a year for muscular dystrophy research. $100 million a year is poured into MS research. The comparable figure for cluster headache research is… well, close to zero. But if you don’t care about cluster headache research, why should we?<<< Of course, many here, including my daughter, have found relief, thank God. But there's so much more to do. I'm ready, willing, and kind of able. Jerry