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Posts posted by CHfather

  1. I feel pretty certain that Zembrace (the 3mg triptan) is available in the UK.  However, it is authorized only for migraine (in the US, at least), because it hasn't been tested on people with CH.  So a doctor would have to prescribe if "off label" (for a use other than its evidence-based use).  Your NHS might be strict about that (I don't know).  It's a lot easier than taking apart the injectors, though, at least in my experience.

  2. Sounds like CH to me. Do you feel restless, like you want to move around, during an attack? (That's considered a symptom, but I know it's not definitive.)  I don't know what to say about "sometimes starts in the neck ," and I can see why that would make you wonder.  Maybe others here will chime in about whether they have similar feelings.

    I would think you'd want to start the D3 regimen.  http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

    Most people don't need the full 6mg of sumatriptan that's in most autoinjectors to stop an attack, and at some level "overuse" of triptans is likely to cause rebound attacks.  You might be able to get the 3mg version, called Zembrace, or to get vials and syringes so you can administer your own.  You can open the autoinjector and give yourself lower doses.  https://clusterbusters.org/forums/topic/2446-extending-imitrex/   Also, many people find that if they optimize their O2 system, with a regulator that goes up to at least 25lpm and the mask made for people with CH (the "ClusterO2 Kit"), and maybe drink some strong coffee or an energy shot/drink at the first sign of an attack, they have less need for triptans.


  3. Nikki, [Edit -- Posted this at the same time as Freud -- sorry for the overlap]

    Some people think that sumatriptan use will cause rebounds.  I think the only use that's been proven to cause rebounds is overuse, and 1 or 2 50mg tablets a day would not, in my opinion, constitute overuse.  Some people would still say that you are at some risk of rebounds, and possibly extending your cycle. Opinions differ about that. (Sorry I can't be more definitive.)

    Most people don't get real relief from tablets -- either the oral type or injections are a lot more effective.

    Sumatriptan is not addictive.

    Do you have oxygen?  Are you doing the vitamin D3 regimen (http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708)?  

  4. 6 hours ago, FunTimes said:

    I have not but I am willing to give it a try. I know people eat candy made of ginger and also make some kind of tea out of it. If it works I will eat the whole root! 

    Many people use ginger successfully for shadows.  For tea, you just simmer raw ginger (plenty of info on the internet).  You can also buy ginger tea, but it might not be strong enough.  Also, people do eat candy made from real, strong ginger (Ginger People is one recommended make of such candy), and I think I recall that candied ginger strips are available is many places. 

    But aside from treating shadows, I don't know how whether anyone has used it with any success as a preventive or as an adjunct to aborting.

  5. I feel like I have read one or two people here saying that they took ginger daily as a preventive.  Can anyone confirm any kind of success doing that?

    Has anyone tried it as an abortive (probably in combination with other things)?  I read a silly study the other day that said that a small amount of ginger was about as effective as a 50mg sumatriptan pill for aborting migraines (https://www.ncbi.nlm.nih.gov/pubmed/23657930).  

  6. Skepticism is justified, and the price is very high, but this is still news.  https://www.medscape.com/viewarticle/905929?src=WNL_infoc_190111_MSCPEDIT_TEMP2&uac=66000EX&impID=1857026&faf=1


    The US Food and Drug Administration (FDA) has cleared the hand-held, noninvasive vagus nerve stimulator gammaCore (electroCore Inc) for adjunctive use in the prevention of cluster headache in adults, the company announced.

    The device is already approved for the treatment of episodic cluster headache and migraine in adults, as previously reported by Medscape Medical News.

    The gammaCore device is placed over the vagus nerve in the neck, where it releases a mild electrical stimulation to the nerve's afferent fibers, which may lead to a reduction of pain in patients. It is the first and only product approved by the FDA for the prevention of cluster headache.

    “The FDA clearance of gammaCore for adjunctive use for the preventive treatment of cluster headache has the potential to help the approximately 350,000 Americans impacted by this debilitating condition," Frank Amato, CEO at electroCore, said in the company's news release.

    According to the company, to help prevent cluster headache, adults should self-administer two gammaCore treatments daily. Each treatment consists of three consecutive 2-minute stimulations. The first treatment should be applied within 1 hour of waking up and the second at least 7 to 10 hours later. gammaCore is available by prescription only.

    FDA approval of the device as an adjunctive therapy for the prevention of cluster headache was based on positive safety and efficacy data from the PREVA study, as well as data from a real-world retrospective study examining the daily clinical use of gammaCore preventively and acutely for the treatment of cluster headache, the company said.

    In the PREVA study, patients who received standard of care plus gammaCore treatments saw a greater reduction from baseline in the number of cluster headache attacks per week than those receiving standard of care only (−5.9 vs −2.1), for a therapeutic gain of 3.9 fewer cluster attacks per week (P = .02).

    In addition, 40% of patients who received gammaCore treatment in addition to standard of care experienced at least a 50% reduction in weekly cluster attacks compared with 8.3% of patients who received standard of care alone (P < .001). Use of gammaCore was also associated with a 57% decrease in the frequency of abortive headache medication.

  7. 3 hours ago, Oxy-man said:

    I guess only clusters respond to oxygen treatment to relieve pain?

    Yes, that is basically true.  Some other "headache" conditions sometimes respond to O2, but not consistently and generally not as fully as CH does.  A big note of thanks can be given to Dr. Kudrow (grandfather of the actress Lisa Kudrow, and who himself had CH), who conducted the first recognized trials of oxygen in the early 1980s, and to Dr. Goadsby and his colleagues who conducted medically persuasive (double-blind, placebo-controlled, etc.) trials in 2009.

  8. There are threads here where people report results from CBD oil.  Some good, some very good, and some neutral (no effect, or no discernible effect).  No bad results, I don't think.  You can find all references in this forum to CBD oil by typing CBD into the search bar at the upper right side of each page.  I think the ~25mg that you're getting might be a little low based on people that reported good results -- but I could be remembering that wrong.

  9. So sorry to read this.  Hoping for better times soon.  Crazy weather patterns in some places have definitely been affecting some people.

    Any chance that you ate something with MSG in it on Friday or over the weekend? 

  10. Joe, was your measurement of 67 in nmo/L (the standard European measurement) or in ng/ml (standard Us measurement)?  I ask because 67 is surprisingly high in US measurement if you haven't been doing some serious supplementation or spending a whole lot of time in the sun, but it's in the relatively low (but "normal") range in Europe.  In the nmo/L measurement, you'd want to be above 200 (80/85 is the ng/ml measurement).

  11. Ginger is considered very good for shadows.  A strong tea made from sliced raw ginger is good.  You can buy commercial ginger teas (if you're careful that you're getting real ginger), use ginger beer (non-alcoholic), or chew on ginger candies (again -- real ginger).  Ginger People is a company that makes strong ginger candies.  Some people have found that energy shots also help with shadows.

    I'd have that coffee ready in advance, and I'd seriously consider the energy shots as an alternative.  Small as they are, there's more caffeine in them than what you're brewing, and you can get then down real fast.  

    Something I have wondered about but have no definitive position on --  I would think that two Benadryl at night might induce a pretty deep sleep, leading perhaps to not awakening until an attack is farther underway than it would be if you hadn't taken the Benadryl.  


  12. JJ',

    Without oxygen and without the other standard pharmaceutical abortives (triptans, usually injectable but sometimes the nasal spray works), you might try quickly drinking an energy shot, such as 5-Hour Energy, at the first sign of an attack.  (Since you're getting hit during the night, you probably are waking up with them, so "first sign of an attack" in this case just means ASAP.) That reduces the severity of attacks for most people, and sometimes aborts them. Many people think that the colder the energy shot is, the better.  For some people, particularly in their early stages of CH, a strong cup of coffee will work. Caffeine is the most important element, but some people think that other elements in energy shots/drinks, such as taurine, also help.  You can also try drinking ice water through a straw aimed at the side of the roof of your mouth where the CH is; the objective here is to create "brain freeze."  Standing in a bathtub of water that is as hot as you can stand might help.  You can also forcefully inhale and exhale very cold air, from an air conditioning vent or just outside if it's very cold. Some people find that very vigorous exercise helps, particularly vigorous exercise in cold outside air.  Some people say that CBD oil has been an effective abortive for them, and apparently DMT is, too, for some people (two entirely different things, which I put together just because of the initializations and because I think they are cannabis derivatives).  Since we're covering all the bases, I'll add that a few people have said that vigorous sexual activity, including masturbation, will stop their attacks.  Those suggestions are presented in roughly descending order of possible effectiveness (in my view).

    Benadryl helps a lot of people as a preventive.  25mg three times a day and 50mg at bedtime. Or what you can tolerate.  It will make you groggy.  

    Do not delay about getting oxygen.  A standard prescription might read something like "Oxygen therapy for cluster headache. 15-25 minutes at 15 liters per minute with non-rebreather mask."  (Docs use some abbreviations in there.)  Let us know when you have the prescription.  Usually a doc will fax it to a provider.  Sounds like you might request Apria as the provider.

    You might check possible triggers in the file of that name in the ClusterBuster Files section.

    Start on a loading dose of D3 ASAP, along with the other supplements.

    Most people do not think that chiropractic or other bodywork helps.  Some people find that it does help them, so ask around among your peers.  Acupuncture has been effective for some people.

    It is said that there is a medication coming to the market fairly soon that might be an effective CH preventive.  

    If there's any way that you can count yourself as "lucky," it's in having received a fast diagnosis.  The average time to a correct diagnosis is 3-5 years, during which time many people continue suffering as well as having unnecessary surgeries, tooth extractions, and many other useless treatments, or are treated as though they are crazy.


  13. https://www.docguide.com/vidian-neurectomy-management-chronic-cluster-headache?tsid=5


    Vidian Neurectomy for Management of Chronic Cluster Headache; Liu S, Kao M, Huang Y, Su W; Neurosurgery (Dec 2018)

    BACKGROUND Management of chronic cluster headache (CCH) remains a challenging endeavor, and the optimal surgical approach for medically refractory CCH remains controversial.

    OBJECTIVE To conduct a preliminary evaluation of the efficacy and safety of vidian neurectomy (VN) in patients with medically refractory CCH.

    METHODS Between March 2013 and December 2015, 9 CCH patients, all of whom had failed to respond to conservative therapy, underwent VN with a precise nerve cut and maximal preservation of the sphenopalatine ganglion. Data included demographic variables, cluster headache onset and duration, mean attack frequency, mean attack intensity, and pain disability index measures pre- and through 12-mo postsurgery.

    RESULTS Seven of the 9 cases (77.8%) showed immediate improvement. Improvement was delayed by 1 mo in 1 patient, after which the surgical effects of pain relief were maintained throughout the follow-up period. One patient (11.1%) did not improve after surgery. One year after VN, patients' mean attack frequency, mean attack intensity, and pain disability index decreased by 54.5%, 52.9%, and 56.4%, respectively. No patient experienced treatment-related side effects or complications.

    CONCLUSION VN is an effective treatment method for CCH patients. Precise Vidian nerve identification and maximal preservation of the sphenopalatine ganglion may achieve good surgical outcomes and dramatically improve quality of life among patients, without significant adverse events.

  14. THMH, I agree that there are a lot of qualifiers in the article related to CH.  And I'm not sure how they concluded that some people who were diagnosed with hemicranias had actually had CH.  Guess I'd have to read some of the other articles they mention.  Interestingly, here's the title of an article from 2010 that I found while looking for others: "The prevalence of headache may be related with the latitude: a possible role of Vitamin D insufficiency?"

  15. This recently updated article (September 2018) contains interesting information about indomethacin and CH.  http://www.medlink.com/article/indomethacin-responsive_headache_syndromes   The authors conclude, "All patients with strictly unilateral headache should receive an indomethacin trial."  Kind of makes sense (although they say that in cases when CH is responsive to indomethacin, larger doses for longer periods are required, so I'm not sure what the proper "indomethacin trial" would be.

  16. 1 hour ago, Elrik138 said:

    I just had to refill my o2, an E tank. When I asked about the rebreather mask they flipped out saying that they would not give that mask to me unless the prescription said so, as they don't want to be responsible for killing me from a build up in the mask? Does any of that make sense?

    It's a NON-rebreather mask that you want, not a rebreather.  I have no idea whether something bad builds up in a rebreather mask, but nothing builds up in a non-rebreather.

  17. On ‎12‎/‎13‎/‎2018 at 3:42 PM, BrianK said:

    Do clusterheads actually have a lower incidence of lung cancer than other smokers or the general population?  That would be very interesting.  I wonder why there is such a high smoking correlation.  It doesn't seem like coincidence.  When I started smoking, it brought me out of a terrible depression.  I'm addicted, but it doesn't feel like a monkey on my back that I want to be rid of.  It provides great relief and enjoyment for me, both in good times and bad.   Maybe smoking interferes with oxygen in some way, or perhaps cluster strikes people who have intensity and personality types prone to addiction.  I'm definitely curious.

    This is from Todd Rozen's report in 2011, based on surveys filled out by more than 1100 people with CH, "Cluster Headache in the United States of America" (he reported there that more than 70% of people with CH had a history of smoking, a figure confirmed in other studies)

    Interestingly, a very
    low percentage had known cardiovascular disease
    (myocardial infarction 1%, bypass surgery 0.3%, and
    coronary stent placement 1%). Strokes were rare
    occurring in only 0.2%.A diagnosis of emphysema or
    chronic obstructive pulmonary disease (COPD) was
    noted in only 2%, while lung cancer occurred in only
    3 patients or 0.3%. Peptic or duodenal ulcer disease
    was noted in only 5%, while diabetes occurred in 3%.
    Epilepsy was noted in only 1%.

  18. Brain',

    Yes, you need some kind of a stand to hold the bigger tanks. There are stationary racks that hold them, and there are also carts (with wheels) that will stand in one place or can be moved.  I am imagining that a competent O2 supplier will provide that if they give you large tanks.  There are racks for the smaller tanks, too, and I assume one should also be provided to you if you get a smaller one or several smaller ones.  For example: https://www.globalindustrial.com/p/medical-lab/medical-equipment/oxygen-therapy-and-supplies/economy-oxygen-rack-holds-6-e-d-or-c-cylinders?trackType=4&trackPrimKey=0&trackCatKey=0&webCatKey=0&presentType=98