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  2. 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
  3. 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
  4. Yesterday
  5. 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 . . . )
  6. 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.
  7. 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
  8. 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
  9. 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
  10. Last week
  11. 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
  12. 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
  13. 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!!!!
  14. 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
  15. 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!
  16. ...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
  17. Welcome, Erica. As it is said here, glad you are here but sorry you have to be. First, foremost, and above all else -- OXYGEN is what you want for stopping attacks. It's the life-changer. You will have a lot less need for other abortive meds (such as triptans or Nurtec) when you use O2. Then there's the vitamin D3 regimen -- the best, safest preventive. An energy shot (such as 5-Hour Energy) or drink (such as Red Bull) at the first sign of an attack can reduce its severity or even sometimes abort the attack. There are reasons why the shots are preferred (more caffeine, easie
  18. Good Morning Everyone! My name is Erica and I found your site through google searching about cluster headaches. Just a little background on me - I was diagnosed with acute episodic cluster headaches at the age of 14 (I'm 27 now). In the beginning, getting a diagnosis was extremely difficult. I think God for my Mom who was my advocate because she knew something wasn't righting did so much research. I had the classic symptoms- SUDDEN onset of headache at night (sometimes 30min-1hr after falling asleep), behind my left eye - which then would become puffy, teary, and red. I felt like
  19. I have six cats and magic on my side! Keep up the good fight my friends!
  20. ......been doing some form of this dance for near 40 yrs now, and it continues to break my fricken heart that the absolutely true above has changed so little....especially so for O2 ...the best, highest success rate, safest, cheapest abortive.... ...it is to sigh.... and one of the many reasons for ch.com, cb.org, et al. i am forever grateful for the clusterheads and their supporters who DO understand.... and reach out to others in the "family".....if we aren't our own best advocates sometimes it seems we got nothing.....
  21. So DC's "decriminalization" (which you correctly put in quotes because it is actually a decision to make the arrest of users of entheogens a very low priority) has actually made it through Congress? As I recall, Congress blocked even the decriminalization of marijuana in the District. Others will have to comment on the feasibility of busting with chocolate-based psilocybin. I suspect that you can't get enough psilo in that form . . . but I don't know. I do know that you can legally buy RC seeds and have them shipped to DC.
  22. Much is written no need to rediscover the wheel. In the end it is a personal choice that only he should make.
  23. Is he breaking open the injectors to get multiple shots from each? That still won't cover 5-6 attacks per day, but properly set up oxygen will deal with many/most/all of those, so the Trex is just needed for breakthrough attacks. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Or vials and syringes, as Pebbles' mentioned. Verapamil is a good example of what I was saying . . . One form (immediate release) works better than another (extended release), but most doctors don't know that. And the typical dosage required to prevent attacks is often far higher than
  24. Thank you, busting is the plan. Luckily it is "decriminalized" here (DC) though only avail in edible chocolate. I don't see any dosing advice for that method...any ideas? Otherwise we'll wing it.
  25. In principle I agree with @CHfather. If one fails to respond to injectable imitrex then the diagnosis should be scrutinized. I have a similar belief to properly administered oxygen. If it doesn't work I would be skeptical of a CH diagnosis. There is general agreement oral forms of triptans are useless for aborting CH. Subcutaneous triptans should be highly effective in a person with classic cluster headaches. Many find reduced doses of 2-3 mg highly effective in aborting an attack. Using multi dose vials or splitting autoinjector doses helps reduce side effects and increases
  26. This was actually a pretty interesting thing to read. Surely this isn't unconditionally true?
  27. I just spoke with Justin- he sold his BOL patent to Better Life. The current status of BOL seems that it will be taken forward for treatment resistant depression. At least it will be cleared in a phase-I soon(ish) if better life raises capital. At that point, I'd think that some cluster sufferers could enroll in their depression trials. The caveat is that Savant HWP holds the method patents to use BOL for Cluster. If we could get them to do a deal with Better Life, things look very promising. -J
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