CHfather

If you put the word reishi into the search bar at the top right of any page, I believe you'll find some experiences, including a woman who said she had found relief from her CH with reishi mushrooms. I don't know what there is about lion's mane, but I remember a guy who kept trying new things and would often have success followed by disappointment. I think he took lion's mane during one of those experimental periods.

We're sorry that you have to be here, but glad that you are here!

Batch is the fellow you're thinking of. It's a shortened version of his last name. So glad you've found good docs and are getting good relief. (Technically, you aren't chronic until you have attacks for a year with only a short period without attacks during that time.) You might find some useful ideas in this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

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 probably have to get to some threshold dose for it to be effective. I don't think that the Mirtazipine is likely to have brought on your attacks, but others might have a more informed opinion about that. Some antidepressants will block the effects of busting, but I don't know about Mirtazipine. It might not seem much like a happy birthday, but I can say that finding this site with its generous and helpful people is a happy thing for you in the longer run.

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/

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.

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.

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

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.

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 cluster headache. BACKGROUND Galcanezumab is a humanized monoclonal antibody that binds to calcitonin gene-related peptide and inhibits its biological activity. METHODS This study comprised a prospective baseline period, a 12-week double-blind, placebo-controlled treatment period, and a 52-week open-label period. Up to six protocol-specified concomitant preventive medications were allowed if patients were on a stable dose for 2 months prior to the prospective baseline period. Patients were randomized 1:1 to monthly subcutaneous galcanezumab (300 mg) or placebo. The primary endpoint was overall mean change from baseline in weekly attack frequency with galcanezumab compared to placebo. Key secondary endpoints were ≥50% response rate and percentage of patients meeting sustained response. Results from the double-blind treatment period are reported. RESULTS A total of 237 patients were randomized and treated (120 placebo; 117 galcanezumab). At baseline, the mean age was 45 years and 63% were using ≥1 preventive drug. The primary endpoint was not met; mean change in weekly attack frequency was -4.6 placebo versus -5.4 galcanezumab ( p  = 0.334). Key secondary endpoints also were not met. Injection site-related treatment-emergent adverse events were more common in the galcanezumab than the placebo group, with significantly more injection site erythema. CONCLUSION Treatment with galcanezumab 300 mg did not achieve its primary and key secondary endpoints. This study underscores the potential distinct biology of cCH as well as the significant unmet need for safe, effective, and well-tolerated preventive treatment. The safety profile of galcanezumab in cCH is consistent with that observed in trials of episodic CH and migraine.

Lenny, were you able to buy this reg straight from the company, with no prescription or other authorization?

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.

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 quickly drink some caffeine or an "energy shot" such as 5-Hour Energy as they are starting on the O2.

Thanks, BOF.

thanks, spiny.

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 cluster headache (cCH) were recently modified, yet pathophysiological differences between the two are still unclear. The aim of this cross-sectional study is to identify and characterize other differences between episodic and cCH. METHODS Data from a retrospective, questionnaire- and interview-based study were analyzed with a focus on associated factors including traumatic head injury (THI), familial history, and change of phenotype. Attack patterns were analyzed using Gaussian and spectral modeling. RESULTS 400 patients and 200 controls participated. A positive family history was more prevalent in chronic than episodic cluster headache (eCH) (34/146 (23%) vs 33/253 (13%), respectively, P = .008). A history of THI was more common in patients than controls (173/400 (43%) vs 51/200 (26%), respectively, P < .0001) and in chronic compared to eCH (77/146 (53%) vs 96/253 (37%), respectively, P = .004). Patients with a positive family history had a unique diurnal attack pattern with twice the risk of nocturnal attacks as patients who did not report family history. Patients reporting phenotype change had a chronobiological fingerprint similar to the phenotype they had experienced a transition into. A higher attack frequency in chronic patients was the only difference in symptom manifestation across all analyzed subgroups of patients. CONCLUSIONS cCH is associated with a positive family history and THI. In familial CH, a peak in nocturnal chronorisk may implicate genes involved in diurnal-, sleep- and homeostatic regulation. The stereoty

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 key role in both migraine and cluster headache (CH). As brain region-to-region structural correlations are believed to reflect structural and functional brain connectivity patterns, we assessed the structural covariance patterns between the volume of the hypothalamic region and vertex-by-vertex measurements of cortical thickness in patients with migraine and in those with CH relative to healthy controls (HC). METHODS T1-weighted images were acquired on a 3T MRI scanner for a total of 59 subjects including 18 patients with CH (age: mean = 43.8, SD = 12.4), 19 with migraine (age: mean = 40.1, SD = 12.2), and 22 HCs (age: mean = 39.1, SD = 8.2). Imaging was collected between attacks (migraineurs) and during out-of-bout phases (CH). Data were post-processed using FreeSurfer version 6.0 and within-group correlations between hypothalamic region volume with cortical thickness were explored using a whole-brain vertex-wise linear model approach. Between-group differences in correlation slopes between hypothalamic region volume and vertex-by-vertex measurements of cortical thickness were interrogated using post-hoc comparisons. RESULTS There were no significant between-group differences (migraine vs CH; migraine vs HC; or CH vs HC) for age, sex, total brain volume or volume of the left or right hypothalamic region. For each group, there were significant positive correlations (P < .01) between right and left hypothalamic region volumes with cortical thickness measurements. HC had significant positive correlations between hypothalamic region volume and cortical thickness over large portions of the superior and rostral medial frontal, orbitofrontal cortex and rostral anterior cingulate, and smaller clusters in the superior and middle temporal, posterior cingulate, fusiform, and precentral cortex. Post-hoc analysis showed significant differences in covariance patterns in those with migraine and CH relative to HC, with both migraine patients and CH having weaker structural covariance of hypothalamic region volume with frontal and temporal cortical thickness. CONCLUSION Recent evidence suggests hypothalamic region connectivity to frontal and temporal areas to be relevant for regulating pain perception. Thus, the diminished structural covariance in migraineurs and CH might suggest abnormal functioning of the pain control circuitry and contribute to mechanisms underlying central sensitization and chronification of pain.

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.

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/

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.

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-imitrex/ Since your docs seem to be enlightened, you might see whether they'll prescribe it in vials so you can measure out your own doses.

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

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 be monitored closely because of possible side effects. I don't know how the other possible pharma preventives, such as gabapentin and topirimate, work with verap, but maybe they'd be worth considering. Maybe even trying the 25mg of Benadryl 4/day?? They all have side effects of their own, for sure, but maybe overall less than lithium, and a less burdensome than the lithium monitoring. Just checking -- are you taking the verap at least 8 hours apart from the calcium in the D3 regimen? Apparently that matters.

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

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 flows/better masks/etc??