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Showing content with the highest reputation since 05/20/2019 in all areas

  1. 3 points
    Headblaster

    Hello - First timer

    Have not posted in while -- But great news for me so far. I started the D3 Regime about six weeks ago. I am taking 15K of D3 and the rest that Batch has listed. my 25-OH levels are below. Near the high end but not over the top. I have been completely pain free since the evening I started the regime. Thanks to all you busters out there!! VITAMIN D,25-OH,TOTAL,IA 05/14/2019 VITAMIN D,25-OH,TOTAL,IA 95 ng/mL (30-100 )
  2. 3 points
    Batch

    Is there something about Australia?

    It's called air conditioning. Edited to Add: I had an interesting exchange with Dr. Cicero Coimbra, MD, PhD, on his high dose vitamin D3 protocol for his MS patients. The starting vitamin D3 dose is 1000 IU vitamin D3 per Kg body weight per day. At 80 Kg, I would be taking 80,000 IU/day vitamin D3 if I was on his treatment protocol. When I asked why so many people had MS in Sao Paulo, Brazil where the Latitude is -23.5º North, about the same distance South of the equator as Key West, FL is North of the equator, so they should be getting lots of cutaneous vitamin D3 from the sun, he replied "They all have the same problem." When I asked what problem was that? He replied, "Air conditioning."
  3. 2 points
    Batch

    oxygen

    Hey Greg, Having studied this topic in detail with several experts since 2006, I'm well aware of your problem obtaining home oxygen therapy as an abortive for your CH. I suspect your Rx for oxygen therapy wasn't written properly. The Rx must clearly state oxygen at a flow rate of 15 to 25 liters/minute with a non-rebreathing mask for cluster headache. Otherwise, home oxygen providers are spring-loaded to assume the Rx is needed to treat COPD and ask for blood oxygen saturation test results, as you've already discovered. The Rx should also state Administer STAT for at least 15 minutes up to 12 times/day with Refills for six (6) months for episodic CH or refills for one (1) year for chronic CH. In addition, your doctor can also get very specific by using the appropriate Dianostic Treatment and Healthcare Common Procedure Coding System (HCPCS) codes: Diagnostic and Treatment Codes: ICD-9-CM Diagnosis Codes: Episodic Cluster Headaches – 339.01 Chronic Cluster Headaches – 339.02 ICHD-II Codes: Episodic Cluster Headaches – 3.1.1 Chronic Cluster Headaches – 3.1.2 ICD-10 NA Codes: Episodic Cluster Headaches – G44.01 Chronic Cluster Headaches – G44.02 Healthcare Common Procedure Coding System (HCPCS) Codes for Home Oxygen Therapy: Equipment: E0424-E0425 Stationary compressed gaseous oxygen system (M-Size cylinders at home) E0430-E0431 Portable gaseous oxygen system (E-Size cylinders when not at home) Contents: E0441 Oxygen contents, gaseous, 1 month’s supply = 1 unit Modifiers: QG - Prescribed amount of oxygen is greater than four liters per minute (LPM) Accordingly, for an episodic CHer needing home oxygen therapy as a CH abortive, the Rx should read: “Oxygen therapy at flow rate of 15 to 25 lpm with non-rebreathing mask as abortive for episodic cluster headache. Administer STAT for 15 minutes up to 12 X per day - ICDM-9 339.01/ICDH-II 3.1.2/ICD-10 G44.02/HCPCS - E0424-E0425, E0430-E0431, E0441 - 12, QG.” For a chronic CHer, the Rx should read: “Oxygen therapy at flow rate of 15 to 25 lpm with non-rebreathing mask as abortive for chronic cluster headache. Administer STAT for 15 minutes up to 12 X per day - ICDM-9 339.02/ICDH-II 3.1.1/ICD-10 G44.01/HCPCS - E0424-E0425, E0430-E0431, E0441 - 6, QG.” If the Rx is written this way, you beat the dirty rotten bastards at their own game using their own rules. Moreover, there's no way the home oxygen provider can confuse this Rx for COPD. Give your neurologist a copy of this post. If the home oxygen provider makes any changes to this Rx, be bold, remind them "it's against the law to change an Rx without consulting with the physician who wrote the Rx. Then ask for the name of the Physician who has attempted to change the Rx so you can report that physician to the State Medical Board legal department. Rationale, A strong offense is the best defense and telling them this usually puts them back on their heels. What's the name of your medical insurance provider and state? In many cases you can go over the Internet and look up the policy regarding "coverage" (they pay) for oxygen therapy. Most medical insurance companies do cover home oxygen therapy for cluster headache. That said, if you're on MEDICARE and do not have supplemental medical insurance that covers home oxygen therapy for cluster headache, don't waste your time, you'll need to take up Oxy-Acetylene welding and buy your own welder's O2 cylinder. (Just don't tell the welding supply people how you intend to use it.) Oxygen therapy for a CHer on MEDICARE is not covered because the unelected idiot weasel bureaucrats at the Centers for Medicare & Medicaid (CMS/OCQ) have made a most egregious non-coverage determination in 2010 (a no coverage rule so they don't have to pay for the oxygen) for home oxygen therapy for cluster headache sufferers on MEDICARE. This is another example of Big Government run amuck. They had a lot of help. If you follow the money, you'll find that Big Pharma does not want you to use oxygen therapy as a CH abortive and instead buy one or more of their patented pharmaceuticals costing upwards of $100 a pop, so they paid Lobbyists on K-street to write legislation for idiot members of Congress, who couldn't write a coherent sentence if they tried, that makes it more difficult for a physician to prescribe home oxygen therapy than write an Rx for opiates. Moreover, in order to get this legislation passed, Big Pharma pays its K-street lobbyists to make donations to the applicable Political Action Committee (PAC) for corrupt members of Congress so they will vote in favor of this terrible legislation. If you've any questions, just let me know. There are no rules in a knife fight... and I'm a cranky old Navy fighter pilot... who loves a fight like this. Take care and happy hunting. V/R, Batch
  4. 2 points
    Hiya Mj...feels weird to quote myself...but I'd just say (almost) the same thing: https://clusterbusters.org/forums/topic/4983-episodic-to-chronic-advice/ Still true 15 yrs later....tho I'd say "manageable" is the proper word. The attitude part was learned the hard way.....and it was for survival. YMMV on how ya get there. I had a life, loved ones, a job, a career...and things to frigging do....and this CH shit was getting in the damn way and threatening to take all of that away. "Not gun happen...read my lips". I realized it wasn't gonna kill me, why should it disable me? My belief it starts with the attitude...and living between the hits....a plan comes with research and advises the right tools (one of 'em being right here)………...
  5. 1 point
    Psiloscribe

    Patient Registry

    Hello everyone!! Have you registered on the Clusterbusters “Patient Registry” yet? Over the years, Clusterbusters has built the largest worldwide patient database in the world. Become a member of the database and possibly a participant in a research project that will lead to better treatments and eventually a part of the cure. By completing this form, you are not registering for a specific study that is underway or that will start in the future. You are not agreeing to become a participant in anything. You are only agreeing to the possibility of being contacted in the future to ask for your participation. Research studies sometimes only require your participation from home. It may only require completing surveys or questionnaires. Some of you may have recently done this for the work underway at Yale University. Some clinical studies require your participation in other ways. Some may include travel. Each study has different requirements. Choice of participation is yours and that of the study investigators and does not involve Clusterbusters in any part of the process. This registry is open for everyone. There are no requirements of past, present or future choice of treatments or any particular cluster headache or human traits. People from all walks of life, all ages and every description, suffer from cluster headaches. We are presently involved in several ongoing research projects as well as several others that are in the long process of approval. As we are involved in research on an international basis, this survey is open to everyone worldwide. We encourage anyone with cluster headaches to respond and help inform others of its existence. As many studies focus on certain segments of the cluster population, episodics vs. chronics as an example, you may not be contacted for every study that is underway. Be a part of a better future for cluster headache patients and participate in our registry. As you will see again on the forms themselves, all of this information is and will remain completely private. The survey, all data and any and all future distribution is administered by the Clusterbuster’s Administrative panel and members of its medical advisory board. Information and people will move the research forward. Please be a part of this. Just the completion of the questions on this short survey, by the thousands that are included, helps gather important information. Please share this with others you may know that suffer from clusters. If you know of anyone that does not have access to a computer, contact us at info@clusterbusters.org and we will mail a written copy for completion and inclusion. To participate, please go to this link: http://tinyurl.com/n9ou73a Some of the questions may give you an idea of some of the projects we are currently working on and there will also be more information available at this years conference. Even if you can't make the conference, we'd love to have everyone here on the registry. Thank you Bob Wold Clusterbusters
  6. 1 point
    MoxieGirl

    How does the Beast return?

    Question for my Episodic friends. When the Beast returns after being away for awhile, how does it do it? Does it pounce on you without warning with a full-force cluster attack? Or does it give you some warning, build up over a few days, for example? I've had more clusters this month than normal, and they are getting longer and sharper, with more intense after affects. And, closer together. I've had 3 in the last few days when I normally have 1 a month, maybe two, but very spread out. It feels like the beast is roaming around the outskirts of my village, poking at the boundaries, preparing for a proper attack. Testing my defences. Is that normal? Should I be worried? Mox
  7. 1 point
    Dave D

    oxygen

    Greg, 25 year sufferer of CH here... O2 is the only cure I've ever had. Thanks to a willing general practitioner I met 10 years ago who wrote me a prescription and worked with my insurance company, I was able to discover how wonderful it was. She has since moved away and my CH have gone away and come back, and it is a bit of a hassle to try to find understanding and knowledgeable doctors willing to help. The first thing they want to do is prescribe migraine drugs that do nothing and sometimes make CHs worse. CHs came back last week and rather than bothering with the prescription/insurance/rental route, I went on craigslist and found several affordable resale oxygen concentrators for sale. I'm one of the fortunate ones that have found success with O2 concentrators. 10-15ml is ideal, but they are expensive. I purchased a 5ml concentrator today and have already used it with success. I have a technique that I use that cures my CH even with lower ml rates. My advice is if you can afford it ($250-500), try CRAIGSLIST. hope you find CH peace. Dave
  8. 1 point
    xBoss

    OHSU Psilocybin Study?

    I'm on year 22 with CH. I had complete success last year with MM.
  9. 1 point
    xBoss

    Shadows back from pizza

    I spent about 15 years Running, managing, owning pizza places all over the USA. My all time favorite is NY style thin hand tossed with light sauce and pepperoni!
  10. 1 point
    Pebblesthecorgi

    oxygen

    I am not aware medicare will cover O2 for cluster headaches. This has been a bone of contention for some time. The CMS ruling ignorantly stated there was too great a risk of respiratory depression giving oxygen if someone retained CO2. The other concern was for eye damage which is only applicable to preterm infants. Such concerns are ridiculous but exist. If you have strait medicaid or medicare there is little change of getting O2 for clusters unless someone is manipulating the diagnostic codes or you have a supplemental policy that is savvy enough to recognize O2 is cheaper than even rationed imitrex. It is a horrible situation that governmental agencies should be ashamed.
  11. 1 point
    I’d also recommend clicking on the blue new users button at the top of the page. Read the whole thing. You want to educate yourself on the whole process and how to ensure your comfort and safety. You’re going to want to buy a cheap but decent gram scale on amazon that goes to to the hundredth place for 100g and under. So it could measure 0.01g. That should be 15-30$ depending on the scale. This next part is copied from a previous pist I made in response to the same question as you: “It is important that you are off all meds that could block the mm from working. Examples include many psychiatric drugs, triptans (sumatriptan aka imitrex or any drug in this class) steroids and a few others that escape me at the moment. You need to obstain from the usual culprit of triptans for 5 days prior to busting/ dosing. Microdosing does not work for clusters. You need to reach a threshold dose where you feel the effects of the mm but don’t necessarily have a significant trip. That “I’m almost tripping” feeling does it for most of us. This is usually achieved at doses of 1-1.5g. Some people can go as low as 0.5g but we generally recommend 1-1.5g. This dose is repeated 3 times 5 days apart. All the while no sumatriptan injections or any other blocking meds. During this time O2 is your best friend. Some people use energy drinks with success as well. I think that’s enough to get you started I’ll post some links in a bit to stuff permanently posted here that you should read prior to busting. “ If you’re dosing to prevent a cycle (are you episodic or chronic?) than people have found that dosing one month before cycle usually starts and follow up dosing every month there after upto and including the last month it usually lasts for. This has been most successful. If you’re chronic let us know and we can discuss things some more. Do a little research and come back to us explaining what you’ve tried, what helps, do you have oxygen... share your story so we can help you more.
  12. 1 point
    greg

    oxygen

    yes, they said that if they get letter from doctor stating I've had more than 5 ch headaches in a month and ones that range up to 180 minutes, they will cover oxygen. I know, thought i had it wrapped. We also talked with Apria customer service who said they would update my previous account and add that Medicare would pay, then [you'll love this] said I need to call the local distributor. I said can't you call them and tell them to ok the request. they said no I had to do that myself, which will try tomorrow but know will net out the same! best, g
  13. 1 point
    jon019

    oxygen

    ...ok, making a little more sense now (the supplier denial part...NOT the horrendous ridiculousness of Medicare not covering)...but the flat out "NO" from supplier is still puzzling if you are willing to self pay...sounds like they just hear 'Medicare" and don't want to mess with that in any way...because any competent national supplier would certainly know about O2 use for CH...it's in the medical lit as THE first line abortive... ...re welding O2...as related many times over the years on this and the ch.com site....contaminated O2 makes for shitty welds...welders and their customers DON'T put up with that...no way, no how....bad welds are dangerous and legally actionable. don't let the banged up, dull paint tank fool ya...it's the same O2 from the same "spigot"....just don't tell 'em you're gonna breath it...makes 'em all squiggly...……..
  14. 1 point
    Batch

    Is there something about Australia?

    xBoss, Changing geographic regions to prevent CH is much too drastic... It may work, but it's a lot easier and far less costly to take 10,000 IU/day vitamin D3 for an 80% probability of success in controlling your CH. If you take the Bio-Tech D3-50 50,000 IU water soluble "micelized" vitamin D3 at 21 cents/capsule and take one (1) every 5 days for an average dose of 10,000 IU/day, the average daily cost of your vitamin D3 is 4 cents/day or ~ $15/year . Some CHers get by with one of these Bio-Tech D3-50 capsules a week, an average vitamin D3 dose of 7,000 IU/day for 3 cents/day or $11/year. The rest of the anti-inflammatory regimen cofactors and conutrients run around 45 cents/day. The entire clutch comes in around 50 cents a day or $183/year... About the cost of taking your wife out for a movie, dinner and drinks. This regimen makes good sense or good cents no matter how you look at it. And then there are all the wonderful health benefits with no adverse side effects... That's a no brainer... Take care, V/R, Batch
  15. 1 point
    Rod H

    From 75 kilograms to 88

    Don't let the beast win. Exercise is proven to help beat the depression to. Make a routine and set goals.
  16. 1 point
    MoxieGirl

    Describing CH to non-believers

    Hi Paul, Welcome to the forum, sorry you have to be here. Looks like you're getting good advice from Freud. He's a good man, and a good friend, with lots of experience on these matters. I've been on CH forums since mine started in 2007, and every so often the conversation of the name 'cluster headaches' comes up, and I don't know of any sufferer who agrees the name is apt. You're right, they aren't on the same scale as a headache, not even in the same universe. And, not everyone (like Freud and myself) have them in clusters. I've been chronic since they started in 2007, although thankfully, shrooms have allowed me to bring them under control and they no longer disrupt my life. Personally, I call them 'cluster attacks', because that's what they are, and attack. I think one of the greatest powers of this forum, and others like it, is to let people know they aren't alone. The pain, fear and frustration you feel is felt by others, and we do get it. And, even more so, there is hope. There are things that work, even if they aren't doctor approved. It is possible to get on top of this beast and get your life back. Not always easy, but possible. Mox
  17. 1 point
    Are you chronic or episodic? Are you taking sumatriptan pills or injection that stopped working. In general the pills are worthless and the injections or nasal spray are the best routes of administration. What dose of verapamil are you on. Quite often it requires doses in the 800-1000mg/day. You need to be followed by a cardiologist and see them after each dose increase to check your EKG and blood pressure. As for the oxygen we have found that the standard 15LPM is not enough for a lot of CH patients. A lot of us buy our own regulators that go up to at least 25LPM. I wouldn’t count the oxygen out until you read up on it here. Sometimes technique makes all the difference. Some people hyperventilate and have better success. I myself found much more relief with the 25LPM flows. If you need links to some affordable well made regulators let me know. And finally we get to alternative treatments which is what this site is all about. Click on the new users blue button at the top of the page. It will lead you to links about busting. Once you’ve read that stuff make a post in the theories and implementation section with any questions you may have. The alternative treatments are a very safe and effective way to abort a cycle or even prevent one. Brian
  18. 1 point
    As a sufferer for over 30 years... I’ve tried so many treatments that didn’t work... you have to keep trying until you find something that helps you - if not reduces them. As far as Dr’s saying it’s not healthy - me being over medicated from Pain is not healthy - my lack of sleep - is not healthy- different drs trying to give me blood pressure medicine when I don’t have high blood pressure - is not healthy. Keto has been used for years to treat epilepsy and so much research is out there supporting it - if you don’t want help and don’t want to try it - there is absolutely no reason to discourage others. I found out something that works for me - and the medical study showed it helped 86% of the patients. It is strict - less than 10% carbs but once you learn it you can very easily do it! People say Keto is hard - I say having clusters every single night is HARD— not having a life because of clusters is HARD - not being able to enjoy the sun because heat is a trigger is HARD - choose your hard! I don’t care if it’s been mentioned a million times .... it wasn’t mentioned by me! I am not spamming and I will not stop sharing my story and what is helping me. If can help just one person it’s so worth it!
  19. 1 point
    Batch

    Looking for advice

    Hey Clusterwife06 and Maddie3, Take a look at the link titled "D3 Regimen for CH' in the Theory and Implementation section. It has everything you'll need to take control of CH. You can also click on the following link, it will pull up this same post. Take care and please keep us posted. V/R, Batch https://clusterbusters.org/forums/topic/6194-d3-regimen-for-ch/
  20. 1 point
    FunTimes

    2019 Patient Conference

    Are you going to have a raffle table set up this year and if so how do you go about donating to it? What other ways can people help out with this event?
  21. 1 point
    Pebblesthecorgi

    Hello - First timer

    Since you have gone into episodic remission it would be a good time to study busting type alternative therapy. As an episodic my observations on GammaCre is similar and tend to agree on the Amovig. Busting clearly helps
  22. 1 point
    MoxieGirl

    Cluster rules

    I'm a sailor too. Am so very addicted to it.
  23. 1 point
    Bilal

    My D3 Regimen Log

    It's been almost a year since I last posted. I guess it's true that you tend to take your health for granted. Fortunately, I've had the luxury to do so this year. I'm glad to report that ever since I started the D3 regimen I've been completely pain free. No more headaches, and not just CH. I don't recall having any kind of headache in almost a year. I've been thanking God and the fine people of this site that directed me to this regimen whenever I can. To those of you still undecided, please give the D3 regimen a chance and stick to the guidelines. And to the people on this forum that helped me, from the bottom of my heart, THANK YOU.
  24. 1 point
    Dallas Denny

    Pain down neck and into shoulders

    Quite common among clusterheads to get a "cluster knot" in their neck and shoulder on their cluster side and I am most definitely included in that group! Dallas Denny
  25. 1 point
    This is something I've heard people say as a suspicion but I've never been able to find any study investigating it. Do you have any info on this? -Ricardo
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