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  1. Today
  2. Hey Drewbie, Your analysis is spot on! The year-over-year efficacy of the anti-inflammatory regimen CH and MH preventative treatment protocol as captured with the online survey that's been running since December of 2011 found an average of 80% of the 313 CHers starting this regimen experienced a significant reduction in the frequency of their CH from a mean of 3 CH/day down to a mean of 3 CH/week in the first 30 days. 52% of these 313 CHers experienced a lasting cessation of CH in the first 30 days. I might add that this raw efficacy for a favorable response edged up to 88.9% for 20
  3. Yesterday
  4. He Stephen, You can download the posted version of this treatment protocol from VitaminDWiki.com with the following link. I've also sent you a PM. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Readers of my webpage at VitaminDWiki.com have downloaded 64,576 copies of this treatment protocol since it posted four years ago on 21 Jan, 2017. Take care and please keep us posted. V/R, Batch
  5. Hey Krios, Thanks for the updates. Howz the head now? Has the frequency of your CH dropped further? Did you start this regimen with the lab test of your baseline 25(OH)D3 serum concentration before starting vitamin D3?. If so, what was it? The normal distribution chart of baseline 25(OH)D3 serum concentrations at baseline from 313 CHers with active bouts of CH responding to the online survey as of Dec, 20, 2019 are illustrated in the following graphic. The normal distribution chart of 25(OH)D3 serum concentrations after 30 days on this treatment protocol are illustrated
  6. it is my opinion. I believe most of the evidence in Vit D and covid applies to folks with conventionally low values and is still be sorted out.. the Cluster data is problematic because it largely represents "numerators in search of denominators" Hopefully the controlled studies underway will help.
  7. Pebbles, Interesting comments. What are you telling readers of this thread? Is it the age old aphorism dating back to biblical times – “All that glitters is not gold” or is it in your opinion, there’s insufficient medical evidence that vitamin D3 and its cofactors help prevent cluster headache or help prevent serious infection by the Wuhan virus resulting in COVID-19? If that’s your opinion, wonderful. This is exactly what this forum is all about, open discussions and the free exchange of information, ideas and experiences. Take care, V/R, Batch
  8. Thank you Batch, I have reduced the hits to 1 or 2 per day and hope that there is light at the end of this tunnel
  9. Kepra is used for seizures but there is not a clear mechanism of action. There are no drug-drug interactions noted and its metabolism is different than classic psychedelics. Withdrawal of Kepra can lead to seizures. Lamotrigine works in the brain by interfering with some electrolyte transfer and is mediated with a transmitter glutamine. Serotonin anf Glutamine often are balance together in a normally functioning nervous system. Lamotrigine metbolism should not effect a classical psychedelic. I believe mixing centrally acting medications like Kepra and Lamotrigine with a subs
  10. Hello We have supplies for busting, but hubby has epilepsy and is on Kepra and Lamotrigine. We know if he doesn't take his meds for 2-3 days he will have a seizure. Does anyone have any info about how long he needs to be off those for busting to have a chance? Thanks
  11. ...point taken devonrex..... your situation breaks my heart and i mean no disrespect.....there are no absolutes for clusterheads.... ....sometimes the decades of frustration with the medical community and insurance companies that have failed us through indifference and ignorance gets to me.... i find it especially hurtful when some of the tools that help so many are unknown, misused.... or thrown at us in a useless manner.....and an opportunity to save so much anguish is lost...
  12. Last week
  13. Thank you, devonrex. I appreciate your caution about this, and will be more careful. I could quibble with some of your points, but what you say is wise and appreciated, and I will remember it.
  14. To be blunt, the couple of 'absolutes' I have seen in this thread are a bit disheartening. With just a quick search 02 is effective at total or partial aborts for 70-80% of patients, there are still patients, such as me, who get little to no relief from any flow rate of 100% o2. As for imitrex, it was 100% effective for me, for about 6 months, then I began getting 1 in 4 times that it failed to do anything, up to a point when it was about 2-3 in 4 that failed to work, so with the associated cost, other considerations I stopped using them. I am a refractory chronic ch sufferer with 5+ atta
  15. Jesus Shot. A 2021 update! Dr. Rick is now in charge of the Program. Absolute success. I took it on the 15th January 21; and the chronic pains i have struggled with for years are gone i should have done this sooner and it would have saved 10s of thousands of dollar and many painful stays in the hospitals. Last time i could not bend my legs and feared a wheelchair for life. The pain is gone and the condition went away almost instantly. No gimmick and no trick. End your suffering. BOB- Texas
  16. You are so right about it having a habit of changing.. I got my first CH when I was 23 (I am now 62), and it has changed and morphed over the years. I just started the vitamin regimen in 2016, had no cycle at all in 2017-2018, had a light cycle of "shadows" in 2019, I am now at "what I hope" is the end of a cycle that started early December 2020... Even though this has felt like a full cycle in frequency, it is much lower on the pain scale, and they are not lasting as long. I really hoped when I went the 2 years PF, I was going to be one of the lucky ones that would never have one ag
  17. As Batch's statistics show, low or not low isn't the right criterion for D3 effectiveness. Sometimes you have to get into the "high" range for it to be effective. (4mg is better than 6, but 4 is still probably twice what you need to stop a CH attack. If you're not having side effects and you have plenty of injectors and cost is not an issue and you're not using too much per day, no problem . . . )
  18. Thanks CHfather! My point 2 was just that I wasn’t under the impression that a full 100% of CH people have low D levels. And therefore if mine wasn’t low, the D3 regimen would be pointless. That could very well be wrong but that was how I understood it. On the injections I use a 4mg injector.
  19. I wish I could respond to the other things you ask about, but I can say about these three that to the best of my knowledge, Batch (xxx) says you can start the regimen before being tested, and you should start "with a few doses at 10,000IU per day" (his words), because of the small risk of a negative reaction to D3. I'm not sure where your point 2 comes from. If you're having CH attacks, then your D level is too low. Batch has written: "CH'ers who have used this regimen and experienced a significant reduction in the frequency and severity of their CH or gone pain free and then had this test h
  20. Hi all - longtime CH sufferer (11 years), first time posting. My cycles have progressively gotten longer and had more headaches during each cycle over the years. I’m currently 3 months into a cycle and still getting 3-13 headaches per day. Historically, oxygen has worked great and I’ve managed by always keeping oxygen close by wherever I go. Now I have 1-2 headaches per day that oxygen isn’t helping, though luckily sumatriptan injections are still doing the trick. I have never tried MM or the D3 regimen but now seems like a good time to start. Also, I take 75 mg nortriptyline a day and have ta
  21. I don't have anything to say about Nurtec, except to mention that just yesterday a person posted that s/he was recently prescribed Nurtec: https://clusterbusters.org/forums/topic/7465-newbie-to-group-advice/?tab=comments#comment-71856 I looked at goodrx.com, where there are often free coupons for lower prices for things you can get at standard pharmacies, but the lowest price there was $886.62. I did want to mention that a possible antidote to being knocked on one's ass by Imitrex (and to most of the other side effects) is to use less of it each time. Most people only need about 2mg to
  22. Welcome to the community @ERICA! Looks like you've had some good suggestions but I'll reiterate Ch father's advice on Oxygen and the vitamin D3 regimen! Dallas Denny
  23. I'd be curious to hear how people's experience with Nurtec is going given that this thread was from 6 months ago. I was recently diagnosed with "difficult to diagnose" headaches. I have long thought I suffered from CHs, but my symptoms aren't quite textbook. I found this forum and just last week had an appointment with one of the headache doctors recommended here (Dr. Mauskop at NY Headache Center). He said that while uncommon, it's not unheard of that I don't fall neatly into one category. I have some symptoms of cluster but also some symptoms of migraine. He said the good news is t
  24. I second Fun Times. I have not had a full cycle for 3 -4 years now. I still get random hits on occasion, but no cycle!!!!
  25. Welcome! Cluster headaches seem to be more rare in young women, so I'm not glad that you're here exactly but I'm glad we aren't alone! I had my first at 20 and am 36 now. I have not tried as many of the medications you mention - my last doctor prescribed me sumatriptan in tablet form which didn't do anything for me except propel me into a medication overuse cluster episode. I will say that 5 hr energy is a great abortive for me, and that I have had a lot of success with a procedure called Sphenocath, which is an SPG nerve block where they put a lidocaine solution on a nerve cluster in yo
  26. Oh wow, we really did get lucky for 2020, didn't we?! I'm sorry for both us! But you're right, we'll get through it! I hope you have some rest and some coping methods!
  27. ...good morning Erica...welcome! ...yeah, thanks Ma for sure...diagnosing CH in an adult is a crap shoot..it would seem to be even moreso for a child.... ....you don't mention OXYGEN.....considered the best abortive and NO side effects, especially heart wise. any experience there? wouldn't need the other meds.... ...careful with the Excedrin....some folks find it helps with shadows (naproxen does for me) but is useless for a regular hit, nasty potential stomach side effects and additive to any blood thinners you may be on. methinks the caffeine is the key ..... best jo
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