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CHfather

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Posts posted by CHfather


  1. 9 hours ago, kat_92 said:

    I’ve had only mild to intense shaddow pain since July 6th every day. No tearing or nasal congestion. She said that is not distinct characteristics for clusters so she thinks it’s chronic migraines.

    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.


  2. 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


  3. 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.

    • Like 1

  4. 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.


  5. 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.


  6. 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


  7. 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.

    • Thanks 1

  8. 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.


  9. 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.


  10. 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.


  11. 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

    • Like 2
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  12. 1 hour ago, CHChris said:

    A question for the experts: If you can abort your headache with oxygen, doesn't that indicate that you do have CH and not one of the other TACs or migraine?

    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??


  13. 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 drooping eyelid on that side. Also runny nose and pale skin.

    Without a different diagnosis, you of course need to treat it as CH.  I have the feeling that maybe your Imitrex is a pill.  If it is, it will be a very little value. As jon' says, Imitrex (sumatriptan) is meant as an abortive, to stop an attack, not as a preventive, to prevent an attack.  If it is in pill form, however, you should almost treat it as a preventive, taking the pill about an hour before your expected attack, but, more importantly, (b) you should get the injectable form of Imitrex, which will stop your attack (if you have CH) when injected right at the start of an attack.  In any event you can't "get it under control" with Imitrex. In fact, the more Imitrex you use, the more likely it is that you won't get it under control.

    Oxygen is a must!  Insist on it, right away.

    I'm not sure what the "IV treatment" you refer to might be. There are some, but they're not usually used this early in the process.  However, your doctor might have been referring to a steroid, typically prednisone, which when taken in sufficient doses can stop (temporarily) the pain of CH.  It comes back, but you get some relief and time to organize your other treatments.  Right now, you have no preventive (verapamil is often prescribed as a preventive, and many or most people here have found that the "vitamin D3 regimen" is a very effective preventive.  They both take time to work.  (There is more information about both verap and D3 in the document I refer you to in the next paragraph).

    You might try quickly drinking an "energy shot," such as 5-Hour Energy, at the first sign of an attack. For many people, but not all, that will reduce the severity of an attack and possibly even stop it.  Strong caffeine helps some people.  Some people get very good benefit from taking Benadryl, 25mg four times a day.  There are many other suggestions, of varying value,  in this document: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  I would urge you to follow the links there.  I'm sorry it's so long, but I wanted to get down most of what I could provide to someone in your situation.

    You asked, "How does oxygen help?"  Not sure anyone knows the exact mechanism, but oxygen, properly set up and properly used, aborts attacks, typically in less than 15 minutes and often much more quickly than that.  More info in that document I just mentioned.


  14. 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, "standard" ("immediate") release and extended release.  The extended release form is, for some reason, generally ineffective.  (BTW, docs will sometimes prescribe a course of steroids, such as prednisone, to quell your pain while the verap is getting into your system. A few fans of verap here, but many are unhappy with the side effects and not thrilled with the preventive effects. Doses that are quite high (even up above 1000mg/day are sometimes needed for it to be effective.)

    2. I think some of these co-factors are good in themselves, but they also combat the side effects.

    3. You have to take a whole lot of D3 over an extended period of months to get D toxicity, and the effects are reversed when you stop taking it. But Batch is insistent that the co-factors do what is needed to prevent hypercalcemia, and I don't think he's seen a situation where that developed as he has been in touch with several hundred people taking the regimen.  I can say I know of one person who thought she could slide by on less than the full regimen and did become hypercalcemic.  The symptoms are quite evident if you have them.

    4. You can get most of the supplements, including fish oil, in large enough doses to reduce your pill intake. Batch gets many of his from COSTCO's store brand, Kirkland.  Batch is now taking a 50,000IU D3 pill (not Kirkland Brand) every x days (I don't remember if it's every 5 days or more days than that).  

    5. If Batch says that, I assume that it is correct.  I think Batch would also advise you to take Benadryl at 25mg several times a day. That has helped a lot of people.

    6. (You don't have a 6. I'm just using this to say again, GET THAT OXYGEN. Your doctor, of course, should have prescribed it. I am assuming that s/he was more comfortable with the sumatriptan because it's the kind of thing s/he typically prescribes . . . but O2 is the winner here, and the Imitrex should only be used for breakthrough attacks, if they occur. You can also get sumatriptan in vials, so you can measure out your own doses, and some people do fine with the triptan nasal spray. Please be sure to read that "basic non-busting info" file that I linked you to -- one or two things there (such as energy shots and melatonin) can help you quite a bit.)

     

     


  15. 40 minutes ago, Brain on fire said:

    Thanks for the correction @CHfather I need to remind myself it is being updated and not to refer folks to the basic non-busting info until that is updated.

    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."

    • Like 1

  16. The link to the D3 regimen is here: https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people.  You won't find it at the blue"New Users..." banner, but you should read the info at that banner in any event.

    Batch will reply to you, I'm sure, but (a) no matter how much sun you get, your D level is almost certainly low -- if not low by medical standards (which it probably is), surely low by the standard of what is needed to combat CH.  I'd urge you to take the 10,000IU.  You'll probably be taking more than that soon. You have to take all the "co-factors" (the other supplements) to prevent side effects.  Take the calcium 8 hours apart from your verapamil.

    120 mg verapamil won't have any effect, but maybe your doctor is being cautious and will increase your dose over time with some monitoring of your heart.  (You won't need it or want it after the D3 regimen has kicked in.)  The verap should be standard release, not extended release.  If you're going to use the Imitrex, you really should be splitting your injections.  Most people only need 2mg, not the 6mg that is in the autoinjector. https://clusterbusters.org/forums/topic/2446-extending-imitrex/    I don't know what "working on getting oxygen" means, but good for you for doing that!!!  O2 is the life-changer.  D3 and busting are life-changers, too.  You might want to read through this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  Several suggestions there for getting by without O2.  Take a look at the "Triggers" file over in the ClusterBuster Files section, too.

     


  17. I have taken the liberty of pasting Matt's original, longer post here.  Quite a coincidence that two people show up on the same day with this idea that is new to me (but maybe not to people who have been around longer than I have been), but I'm anxious to see where it goes.

    >>>>>BEFORE YOU READ I AM NOT A MEDICAL PROFESSIONAL PLEASE SPEAK WITH YOUR GP BEFORE TRYING ANY TREATMENT OR MEDICATION!!!

    Hi everyone I have had cluster headaches for more than a decade.  And for all of this time I have been searching for new drugs to abort my cluster headaches.

     The drug has to meet certain criteria, it needs to be fast acting, discrete, cheap, easily available and constrict blood vessels ideally by acting as an agonist to the same serotonin receptor types as sumatriptan (5-HT1B and 5-HT1D).

    So, after years of searching I have come up with Oxymetazoline, an over the  counter decongestant nasal spray.

    This drug meets all of the above criteria.
    Importantly it works as a full and potent agonist of type 5-HT1B and 5-HT1D receptors. 
    www.sciencedirect.com/science/article/pii/001429999190432P

     I have been testing on myself for the last 3 years with good results.

    I abort at least 7/10 attacks with oxymetazoline alone.

    When oxymetazoline fails I use oxygen and it quickly finishes the attack off.

    For me, the combination of oxymetazoline and oxygen has proven itself to be a near unstoppable way of dealing with the beast (far more effective than oxygen alone).

     

    I would like to  mention that rebound congestion is an issue that I have raised with my GP and have been prescribed a weak steroid nasal spray to combat this.

    I have not used sumatriptan except when abroad for more than a year.

    Since I have substituted sumatriptan for oxymetazoline I have had no drop in frequency of attacks and nasal congestion will almost always progresses to a cluster headache if not treated so I can't rule out rebound headaches as a possibility.

    However,

    I have had phenomenal success with my current strategy of viewing congestion (rebound or otherwise) as an early warning sign of an attack and treating with oxymetazoline.

    This will sound disgusting but this is how I use oxymetazoline.

    At the first sign of an attack (congestion) I administer two metered spray doses to each nostril.

    As soon as my airways open up I can always pull an extreme amount of mucus from my nose and sinuses into my throat I spit this out if I can but have to swallow if not. 

    Every time I pull some mucus back it's like the pressure and pain decreases slightly. 

    I keep breathing and pulling mucus away from my sinuses until the attack stops.

    Because of the current success I have been having with oxymetazoline and pulling mucus, my personal leading theory is as follows:

    Often humans over complicate things and more often than not the answer is simple.

    So,

    I believe Cerebral blood vessels dilate causing a pressure pocket inside the sinus cavity, this then fills up with air and mucus inflating inside the head like a balloon, this gets so big that it starts to put pressure on nerve bundles thus causing the severe pain associated with the condition. (Just a laugh, dont destroy me lol)

    Just to clarify to everyone this post is not a recommendation to try any drug before speaking to a medical professional.

    I have not read about this anywhere else and I am interested to see if anyone else has been down this rabbit hole.

    If not, I hope this helps someone.<<<<<

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