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Everything posted by CHfather

  1. 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 probab
  2. I think it would be good for you to read this file. Some things you can do right now (start D3 regimen, for sure); others might need prescription. You might have to fight with a doctor for oxygen, even though it is the #1 recommended abortive. Be ready. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  3. Splitting injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Or, ask for a prescription for vials and syringes so you can measure out your own dose. There's a lot of caffeine in energy shots (the smaller things like 5-Hour Energy). Not as much in the standard bigger drinks (RedBull). You would probably do fine just brewing some coffee and keeping it in the fridge.
  4. FWIW, I know of a person with CH who has resolved all major attacks through busting, but, like you, has mild to intense shadow pain every day. No question that what he has is CH, not migraine.
  5. Batch is the man for D. He is emphatic about his preference: >>The most significant change occurred in July of 2018 with the switch from the oil-based liquid softgel vitamin D3 formulations to the Bio-Tech D3-50 50,000 IU water soluble vitamin D3. Several of us found it faster acting with a higher bioequivalence in elevating serum 25(OH)D3 than the same dose of the oil-based liquid softgel vitamin D3 formulations. << More here: https://clusterbusters.org/forums/topic/6807-new-to-this-forum-–-cast-iron-until-hit-by-ch/?tab=comments#comment-67520
  6. This recommended doctor list is old, and there's nothing specifically listed for Dayton, but you could check in the Ohio section: https://clusterbusters.org/wp-content/uploads/2014/10/OUCH-DOCS-US-07-22-14-NC-OR.pdf I know THE Ohio State University has a headache clinic.
  7. I guess we kind of knew this, but it's still sad to me to see it confirmed. https://www.docguide.com/phase-3-randomized-placebo-controlled-study-galcanezumab-patients-chronic-cluster-headache-results-3?tsid=5 Phase 3 randomized, placebo-controlled study of galcanezumab in patients with chronic cluster headache: Results from 3-month double-blind treatment; Dodick D, Goadsby P, Lucas C, Jensen R, Bardos J, Martinez J, Zhou C, Aurora S, Yang J, Conley R, Oakes T; Cephalalgia 333102420905321 (Feb 2020) OBJECTIVE To report efficacy and safety of galcanezumab in adults with chronic cl
  8. Lenny, were you able to buy this reg straight from the company, with no prescription or other authorization?
  9. Good for you for making it happen, Luis!! At 15 lpm, the E tank has about 45 minutes worth of O2. Closer to 35 minutes, realistically. So now might be a good time to try to get a bigger tank, or more E tanks.
  10. Luis, You might want to look over the discussion of oxygen here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ The guy in this youtube video does a good demonstration of a standard breathing strategy, starting at 3:18. http:// https://www.youtube.com/watch?v=PtFHRIQN17s&t=127s Your mask will not look like his (he is using the one that is made particularly for people with CH), but yours should have a bag on it that fills as you are breathing out and empties as you breathe in. Many people with CH find that it helps them stop the attack faster if they qu
  11. I have a question. It says here, "The diagnostic criteria of episodic and chronic cluster headache (cCH) were recently modified." Does anyone know what the modification was? https://www.docguide.com/episodic-and-chronic-cluster-headache-differences-family-history-traumatic-head-injury-and-chronoris?tsid=5 Episodic and Chronic Cluster Headache: Differences in Family History, Traumatic Head Injury, and Chronorisk; Barloese M, Beske R, Petersen A, Haddock B, Lund N, Jensen R; Headache (Dec 2019) OBJECTIVE AND BACKGROUND The diagnostic criteria of episodic and chronic c
  12. This study is further evidence for a theory that has been developing for a while. It is that in people with CH the brain's pain perception mechanisms, which are associated with the hypothalamus, are messed up ("abnormal functioning of the pain control circuitry"). https://www.docguide.com/altered-hypothalamic-region-covariance-migraine-and-cluster-headache-structural-mri-study?tsid=5 Altered Hypothalamic Region Covariance in Migraine and Cluster Headache: A Structural MRI Study; Chong C, Aguilar M, Schwedt T; Headache (Jan 2020) OBJECTIVES The hypothalamus plays a ke
  13. I think 200mcg = 8,000IU. Great results! You are strongly urged to take all the cofactors listed in the full D3 regimen, though, or you could start to have some issues from too much D.
  14. Cluster S, I would suggest that you and your husband take a look at this document so you have a full sense of all of his options: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  15. Maybe for some people caffeine is a trigger. For most people it's an effective abortive. Those pills might or might not be helping you, Talia, but the caffeine in them is probably trying to help.
  16. Prednisone, Emgality, and D3 to prevent, and a triptan to abort. As long as there aren't any adverse interactions among those things, and since you acknowledge that you won't learn much about what's helping and what isn't, and as long as you know that if you have a future cycle O2 is fundamental, I don't see any holes. If your triptan injector is 6mg, you will want to think about splitting your doses, since most people can abort an attack with 2mg or 3 at most. Maybe you have a 3 or 4mg injector. If not, here's info on splitting: https://clusterbusters.org/forums/topic/2446-extending-imitr
  17. What have they prescribed for you? I hope you'll consider the D3 regimen, which they probably don't know about (but I suppose they might). https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people
  18. If lithium does affect the trip associated with a tryptamine, that probably wouldn't make the tryptamine more effective at treating CH, since the trip and the medicine effect of the tryptamine are two completely separate things. As with Denny, I only "know" about lithium interactions from what was written in the CB Files. I do know that lithium has helped some people. I know that from reading about it, seeing it first-hand, and from medical research. It is generally not recommended for people with episodic CH because the rebound attacks when stopping it can be quite severe. It has to b
  19. Your friend can't get nearly enough D from foods. Batch's recommended minimum daily dose of D3 is 10,000IU. Your friend would have to eat between 5 and 10 pounds of salmon in a day to get 10,000IU (depending on whether the salmon is wild caught or farmed). More than ten pounds a day of fresh herring; more than 20 pounds of pickled herring. More than 6 tablespoons per day of cod liver oil. Pills are a lot easier. https://www.healthline.com/nutrition/9-foods-high-in-vitamin-d#1
  20. Not an expert, but I've looked into this a lot. It does "indicate" what you say, but it is not conclusive. People with other "headache" conditions sometimes get relief from oxygen. For example, a notable "headache" expert wrote some time ago (2007), " I have found approximately 50 percent of my patients with migraine headaches will be able to achieve some relief with oxygen therapy. They use 100 percent oxygen for eight to nine liters a minute for up to 30 minutes." https://headaches.org/2007/10/25/oxygen-therapy/ If that was true, would more people have better results with higher flo
  21. The clockwork regularity is a feature of CH that is not common to other "headaches," at least as far as I know. Of course, it is possible that you are doing something before 2:00 every afternoon that brings on a severe headache, but I don't know what that would be (eating food with MSG in it would be one possible example, though nothing really explains the severity). As jon' said, being able to lay still or go to sleep is very uncommon. "Restlessness" is in fact a diagnostic symptom of CH. Other CH symptoms include tears from the affected eye, redness in that eye, swelling in that eye and a
  22. Finance, Batch is the man for the D3 regimen, so I can only partially answer your questions. He'll be here soon, I'm pretty sure, or you can send him a PM (click on the envelope icon at the top of any page and then type Batch into the "To" line). He is amazing at responding to questions, here and by PM. Plus, you can type either "Batch" or some key words ("Kirkland," for example, as I mention below) into the search bar at the top of each page and get virtually all the information you might need, though it's a lot to read through. So . . . 1. Verapamil comes into two versions, "s
  23. The "basic non-busting info" file has updated info about where to see the D3 file. But the blue "New Users ..." banner that you referred to has only basic busting info. No D3 info; no "non-busting info."
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