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  2. Thank you for sharing and god bless & god speed, I hope you get the time to watch this video, he goes into healing the spirit world.
  3. Today
  4. Brain on fire

    Coronavirus PSA

    @Batch your diet reccomendations are good. Here is my challenge for anyone to use them. Limit spending to .49 (forty-nine cents) a day SNAP benefits, living in a rural area food desert with no public transportation & no internet service. Garden would be nice but your wheelchair doesn't work on anything but paved surfaces. I look forward to reading how it is done.
  5. CHfather

    Severe headache

    Just as some general information, you can use the search bar at the top right of the page to see what others have said related to questions you might have. Occipital nerve block is often abbreviated as ONB, so I would think that if you put that in, or the whole phrase, you'll see some thoughts. My own thought on this (others might disagree) is that if you can get an O2 prescription and quick delivery, that's where you should start, along with jumping on the full D3 regimen at "loading dose" levels and maybe a prednisone taper. Pred will typically stop attacks for a few days, and sometimes will stop a cycle. My only qualification to these suggestions is that if you don't have CH, the oxygen very probably won't help, whereas it might be (I don't know) that the ONB would work for other conditions. Setting up a welding O2 system is pretty straightforward, and we can pretty much walk you through it in addition to the information in the ClusterBuster Files. I don't know whether "industrial gases" (the category that includes O2) are considered essential services and therefore open. I know that there are Airgas offices in MD just outside DC, and also in VA just on the other side of DC. You can get O2 there, if they're open. Then it's just a matter of buying a regulator and a mask online and connecting up your system.
  6. graci

    Severe headache

    Thanks so much. This is so great information. I am actually hopeful now. I will actually try and ask my doctor about giving a prescription for Oxygen. I am not medically savvy and not sure if I will be able to figure out the non prescription route. Thanks for the information on the area doctors also. I will call them in Monday and see if I can get something. The neurologist I saw via tele-visit has asked me to go to his office physically to get occipital nerve block shots. Do I need to go to a headache specialist before I get that shot?? Thanks again so much!!!
  7. Yesterday
  8. spiny

    Pregnant and new CH episode

    Happy Dance!! That is such great news!
  9. 81007

    Urgent Request regarding Oxygen & Medicare

    I think I had the COVID-19 disease. I have been coughing for 46 days. I believe I caught it on a flight back from the UK. I arrived back in the USA on 16 February and started coughing the evening of the 18th of February. I was tested on the 19th of March by the National Guard using a nasal swab. The test came back NEGATIVE. I have had a severe cough now for 46 days. I think I had the virus and had shed by the time I was tested. I have spent most of the last 46 days in bed as the cough lessens when you lie down.
  10. Psiloscribe

    Urgent Request regarding Oxygen & Medicare

    Links, yes, very sorry. This is the link to the prescribing document. https://drive.google.com/file/d/1Z6tUblQVzzQPPYCOXu_Abn2UqoMZ-rFO/view This is the link to our page with a lot of additional oxygen informetion that can help doctors and insurance companies. https://clusterbusters.org/resource/helpful-documents-for-printing/ Bob
  11. plhbn

    Alcohol intoxication during cluster

    Just thinking about drinking during a cycle makes me lay on the floor in a fetal position and whimper. I guess that has its positives since if it was prophylactic then I would surely drink unhealthy amounts.
  12. jon019

    Urgent Request regarding Oxygen & Medicare

    ...got a link?
  13. Good morning, A few days ago, CMS relaxed many regulations for COVID crisis, including one related to oxygen. http://go.cms.gov/3aDAFFq National Coverage Determinations (NCDs) and Local Coverage Determinations (LCDs) on Respiratory Related Devices, Oxygen and Oxygen Equipment, Home Infusion Pumps and Home Anticoagulation Therapy: Clinicians now have maximum flexibility in determining patient needs for respiratory related devices and equipment and the flexibility for more patients to manage their treatments at the home. The current NCDs and LCDs that restrict coverage of these devices and services to patients with certain clinical characteristics do not apply during the public health emergency. For example, Medicare will cover non-invasive ventilators, respiratory assist devices and continuous positive airway pressure devices based on the clinician’s assessment of the patient. This is the NCD that we have been fighting against for the past 10 years. This means that we have a window of opportunity to obtain oxygen for cluster headache through Medicare. It was previously not covered by that insurance. We hope that once patients obtain this necessary and life-saving treatment for their cluster headaches, it will not be taken back once the current pandemic crisis is over. Regardless, we believe that a few months with oxygen is better than none. If you have medicare, we are urging you to reach out to your doctor for a prescription today! Even if you are not in cycle now, it will be good to prepare for your next one. The more people who use this unique window of opportunity, the better. Here is prescribing information you can pass on to your doctor if they are unfamiliar with the required high flow rate (at least 12-15lpm) and the protocol needed for cluster headache treatment. There are also other resources and studies here if your doctor would like more information. Also, if you have private insurance or medicaid and have been refused coverage for oxygen in the past, and the CMS determination was sited as a basis for their denial, perhaps it is a good time to try again. You can use the CMS information above if you should need to appeal or justify your request. Even if they haven’t given a reason for denial, it might be a good time to try again. If you are comfortable, please drop us a note at info@clusterbusters.org and let us know your success or failure with this so that we can attempt to track efforts. We are hopeful that this decades-long battle to obtain oxygen for some of the most vulnerable in our population is at an end. It seems a terrible thing that we have to take advantage of this global tragedy, but we also know that clusterheads have been living for far too long with inadequate treatment. We have been ignored and we have lost many along the way due to this ignorance and fear. Our hearts go out to those who have suffered or lost their lives due to Covid-19 as they go out to those suffering with cluster headache, especially during this difficult time. This is the link to the oxygen tri-fold document that is helpful with prescribing information https://drive.google.com/file/d/1Z6tUblQVzzQPPYCOXu_Abn2UqoMZ-rFO/view This link will take you to additional oxygen information: https://clusterbusters.org/resource/helpful-documents-for-printing/ As always, if you have any comments or questions, please feel free to reach out. Sincerely, Eileen Brewer President Clusterbusters
  14. CHfather

    Severe headache

    I agree that it's hard to tell right now whether you have CH. But the anesthetic that is most typically used for dental work does set off severe CH attacks in many people who do have CH. Georgetown's Headache Center is supposed to be good -- but I suspect there's a long wait (if people are even seeing patients now). U of MD has something, too: https://www.umms.org/ummc/health-services/neurology/services/headache-migraine
  15. Brain on fire

    Severe headache

    Found the link, tons of good info on oxygen & lots of goodies that are helpful. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  16. So, those are all things that have been tested (some of them extensively) related to migraine, because there is a logic that says they should help. This is an odd quote from a journal article about three of your four ingredients: "The prophylactic properties of other agents such as magnesium, riboflavin, and coenzyme Q10 are low at best, but their lack of severe adverse effects makes them good alternative treatment options." Like Pebbles' said, this seems to be arguing (regarding migraine), "They probably won't help much, but they can't hurt much, either." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4359851/ Maybe in combination something good happens. I know we have had enthusiasts for each of these elements at different times at the board, and I think studies have shown that magnesium supplementation can be valuable for CH.
  17. Brain on fire

    Severe headache

    There are two options: 1. Medical oxygen, by prescription. Don't be surprised, some docs don't know how to write the rx. Usually written Oxygen 15-20 lpm with nonrebreather mask for cluster headaches. Most get E sized tanks (a cart usuful when away), a large M size tabk for home, the mask (some use the cluster o2 mask) & the regulators you need. It is usually delivered. Insurance may not cover it, some pay out of pocket. 2. Welders oxygen, I'd guess 70% here use it, the tanks are filled from the same large supply tanks as Medical oxygen. No rx needed (you can't tell suppliers it will be used to inhale, we have a couple of routines you can use if asked), you'd need to get a regulator, mask etc. Some lease tanks, some buy tanks. You have to take these tanks for refills. Links for details will be shared shortly (sorry I'm not great with links). Oxygen has no side-effects & has saved many cluster head lives. Mine is one.
  18. I’d say this fits in “if it sounds good it will work” rationale. It might be in the “what do you have to lose?” Category. Then again “I’m so smart and experienced so do this” may apply. How about “there is no downside so why not?” Most of these things in different modalities or combinations have been tried. The only work that has credibility is the treatment and data Batch has presented. From a strictly science point of view its easy to poke holes in the data but it’s well presented and he has decent follow up. I would take someone seriously if they did half the work Batch has done. In the end we really don’t have any one size fits all answers. My guess is we will find a combination of genetic predisposition and environmental factors are in play. It’s hard to imagine a selective advantage that allowed cluster headaches to survive the genetic pool but someday in retrospect it will all make sense. If it is genetic then I guess we really are all related.
  19. Last week
  20. Batch

    Coronavirus PSA

    CDog, It's not my option. I'm just the messenger. The recommendations for 3 grams/day vitamin C, 5,000 IU/day vitamin D3 and 50 mg/day zinc to strengthen the immune system and as a prophylaxis for viral infections, come from experts in Integrative medicine, immunologists and molecular biologists a heck of a lot smarter than me. I learned over 70 years ago you can lead a horse to water... and 8 years ago you can't make a CHer take the anti-inflammatory regimen to prevent their CH until they're ready. It's kind of binary. Don't take these three nutrients and take your chances with the SARS-CoV-2 virus and COVID-19 infection... or take all three knowing you're giving your immune system the nutrients it needs to help protect you from viral infections. This is something we can do at home today without waiting for an approval by the FDA or a prescription. The human immune system has been doing this for thousands of years... before the advent of modern medicine pharmaceuticals and vaccines... or we wouldn't be here. Take care, V/R, Batch
  21. Batch

    Coronavirus PSA

    BOF, There was a time when I would have sung that same song. That was when we had big home gardens, our own hen house and hogs, the supermarkets sold fresh produce, dairy products, meat, poultry and eggs from local farms and all the seafood was "Wild Caught". We had pantries full of our own or locally grown fresh canned fruits and veggies along with fresh frozen fish to eat during the winter months. Not so today with Big Agra farms, Concentrated Animal Feeding Operations (CAFO) meats, poultry and eggs, farmed fish and shelfish from all over the world, and fresh produce shipped up from Mexico and South America. As a consequence, the produce, dairy products, meats, poultry and eggs look the same, but with no where near the original vitamin and mineral content during my childhood. Moreover, nearly everything including the grains that are fed to CAFO beef, hogs and poultry is tainted with glyphosate, the herbicide in RoundUp. This comes about when seeds were genetically modified (GMO) to be "RoundUp Ready" i.e., resistant to the herbicide glyphosate so crops could be sprayed directly with RoundUp and not kill them during growth and again for grains as a desiccant for shipment and storage. It's bad enough to hear RoundUp is a carcinogen, at least the courts think so, but the real killer is what glyphosate was engineered to be, a herbicide. The average person will say, "So What?" until you tell them those friendly colonies of bacteria and biota living in our GI tract called the microbiome are part of the plant kingdom and glyphosate kills them off almost as fast as a week to 10-day course of antibiotics. The human microbiome also plays a role in digestion liberating essential vitamins, minerals, fats and proteins from the food we eat making for a symbiotic relationship. Glyphosate destroys that symbiotic relationship and that insults our immune systems. Moreover, a glyphosate molecule mirrors the chemical structure of glycine, the smallest of 20 amino acids commonly found in protein. Consequently, the human body can be fooled into receiving glyphosate as a substitute for glycine and that is a major insult to our immune systems. As far as unregulated supplements go, that comment is not entirely correct. While the FDA does not regulate vitamins and minerals, nearly all name brand vitamins and minerals are tested for purity, strenght and their production facilities and processes are inspected by independent 3rd party organizations like the ConsumerLab.com, NSF International, and U.S. Pharmacopia (USP). And if you think Big Pharma pharmaceuticals are closely monitored by independent testing organizations for purity, strength as well as their production facilities checked for best practice processing and cleanliness, think again. The FDA and your tax dollars are responsible for that. In 2007 the FDA closed down the AM2PAT factory in North Carolina, but didn’t act in time to prevent a lot of 74,000 syringes of heparin contaminated with bacteria from getting to patients in at least five states. At least 4 deaths and more than 160 infections were linked to the syringes. Yes, I know, a drop in the bucket compared to the COVID-19 pandemic. Part of the problem involves the revolving door between Big Pharma and Big Government including the FDA. It's kind of like having Boeing test pilots conduct the FAA certification for air worthiness on the Boeing 737 Max 8 aircraft. Ya think there might be a conflict of interest? Getting back to balanced nutrition, you can get all the cutaneous vitamin D3 you need running around for at least 20 minutes a day, daily, in a bathing suit in the mid-day sun with no sun block this time of year... if you live in South Texas or South Florida. Otherwise, a good 5000 IU capsule a day of vitamin D3 is in order. If you think you get the 3 grams/day ascorbic acid (vitamin C) from oranges, think again. As the average medium sized orange contains 70 mg of ascorbic acid, you would need to eat 42 oranges a day to get the needed 3000 mg/day of vitamin C. It's much easier and far less expensive to pick up some Fruit-Fresh. You'll find it in the canning section of most supermarkets at eye level above the Ball canning jars. It cost ~$5 and contains 141 grams of ascorbic acid for a cost of 3.5 cents/gram. A dash in a small glass orange juice or water three times a day meets the requirement just fine. You can also go to Costco and pay 8 cents/1000 mg tablet of vitamin C. Zinc has a similar story except you only need to eat 2 to 3 medium sized oysters a day to get the needed 50 mg zinc. Having grown up in the heart of Puget Sound, a 3 minute walk to the nearest beach, I order at least a half dozen oysters on the half shell for an hors d'oeuvre and up to two dozen oysters as a main course depending on size. As far as shopping goes, if it doesn't have Non GMO and Organic on the label for packaged products, I don't buy it. I buy free range organic meats, poultry, eggs and dairy products. Veggies and fruits come from the Organic section. I get a bit wild fishing in Alaska every June so bring home on average, 75 lbs of fresh caught, vacuum sealed, frozen fillets of salmon, halibut, cod and 2 to 3 1lb bags of headed deep water 4-Spot shrimp pulled up from a depth of 450 feet. We don't talk about the actual price per pound of this awesome seafood. The thrill of landing a 30lb King Salmon, a 50 lb Halibut or pulling up a shrimp pot with enough shrimp to fill a 5 gal pail or more then eating some of it fresh within a few hours of being caught, more than makes up for all of it. I try all the supplements in the anti-inflammatory regimen before I suggest them. They all bear the USP or GMP logo and surprisingly, most are manufactured here in the US. The few that are manufactured off shore come from Myanmar and Vietnam, none from China. Take care, V/R, Batch
  22. Psiloscribe

    SUNCT or SUNA survey

    Hello Clusterbusters has started a new survey for people that have been diagnosed with either SUNCT or SUNA These TAC's are very similar to clusters but are very short in duration, such as seconds or a couple minutes long, and having many attacks per day. The number of attacks can go up to having more than 100 attacks. If you have been diagnosed with either SUNCT or SUNA please complete our new survey. We will be using the data we collect in this survey for new research projects. This will likely be the largest collection of data for these conditions and will be very valuable in future research projects. The survey can be found here: http://survey.constantcontact.com/survey/a07egywvpzdk7qkcw90/start Thank you all, Bob Wold
  23. CDog

    Coronavirus PSA

    I was trying to point out that your opinion isn’t the only one out there.
  24. graci

    Severe headache

    I don't have oxygen. I read about it, and wasn't really sure how to get it. Do I have to call my doctor?
  25. Brain on fire

    Pregnant and new CH episode

    Yipee! Enjoy the pain free!
  26. Brain on fire

    Severe headache

    Graci, do you have Oxygen? It is the 1st line abortive for cluster headaches!
  27. graci

    Severe headache

    Thank you very much for your response. The neurologist I had an appointment with is not a headache specialist, and unfortunately I was only able to have tele-visit with him. I do see some headache specialists in the area, but can't seem to get an appointment with them until June. I do have my nose stuffy and with clear discharge (not runny though), and it is mostly on one side at a time. It is very common for the side to be shifted though. I tried Vitamin D3 (10000 iu) that I had at home yesterday, and that did seem to help. I am also sipping on ice-cold water for now, and that seems to take the edge off. Thanks for this wonderful community and the willingness to help!!
  28. Cmwlondry

    Pregnant and new CH episode

    Thank you all so much - I am actually FIVE days cluster free!!!!! After having these for so long, I know to be cautiously optimistic but I am celebrating for now... Thank you again for all of the help and guidance and I am so glad to have connected with this group to know how to better fight this battle. Just so grateful!
  29. Dallas Denny

    Severe headache

    Hi Graci and welcome to the community! To be honest, what you're describing doesn't sound like classic cluster headache to me. Typically clusters are one sided with pain behind the eye, temple and forehead accompanied by runny or stuffy nose and a watery or tearing eye. If your neurologist isn't also a headache specialist, I would advise trying to find one who is.....I'm sorry to say that I'm not familiar with one in your area though! Gabapentin aka neurontin usually doesn't work well for clusters and there's other front line approaches so I doubt that your doctor is very knowledgeable about clusters! Dallas Denny
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