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ClusterBusters

CHfather

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Everything posted by CHfather

  1. CHfather

    Sumatriptan Help

    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)?
  2. CHfather

    Ginger for preventing or aborting?

    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.
  3. Thank you for this, Dan'. You're right -- it is pretty easy to read and understand. 18 CCH patients for whom pharma preventives don't work or were not tolerated. 11 of them PF after 3 months, and 4 with attacks significantly reduced.
  4. According to this research, "there is no relation between CH attacks and specific sleep stages or between CH and breathing parameters" Also, overall sleep patterns in CH patients are the same out of cycle as in cycle. https://www.docguide.com/disturbed-sleep-cluster-headache-not-result-transient-processes-associated-cluster-period?tsid=5 BACKGROUND Cluster headache (CH) is characterized by severe, unilateral attacks of pain and a high nocturnal attack burden. It remains unknown if perturbations of sleep are solely present during the CH bout. Therefore, we aimed to investigate differences in sleep between the bout and remission period in episodic CH (eCH) patients, secondly to compare patients in the two phases with controls. METHODS eCH patients, aged 18-65 years, diagnosed according to the International Classification of Headache Disorders 2 nd edition, were admitted for polysomnography at the Danish Center for Sleep Medicine, in bout and in remission. The macrostructure of sleep including arousals, breathing parameters, limb movements (LMs) and periodic limb movements (PLMs) were compared with 25 age-, sex- and BMI-matched healthy controls. RESULTS There were no differences in any of the sleep parameters for patients in bout (n=32) compared with patients in remission (n=23). Attacks were unrelated to sleep stages, presence of apnea episodes, PLM's, LM's and arousals. In bout, patients had longer sleep latency (18.8 vs. 11.7 minutes, p<0.05) and REM-sleep latency (1.7 vs. 1.2 hours, p<0.05) than controls and sleep efficiency was lower (82.5 vs. 86.5%, p<0.05). Patients in remission only had a longer sleep latency compared with controls (17.5 vs. 11.7, p<0.01). CONCLUSIONS The results support the presence of a continuing or slowly recovering disturbance of sleep outside the bout rather than a disturbance occurring secondary to attacks. Further, we confirm there is no relation between CH attacks and specific sleep stages or between CH and breathing parameters. This article is protected by copyright. All rights reserved.
  5. 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.
  6. CHfather

    Help Needed

    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.
  7. CHfather

    CBD

    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.
  8. CHfather

    How was your weekend?

    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?
  9. CHfather

    Vitamin d3

    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).
  10. CHfather

    My 1st Post, Re: Dancing w/ the Devil

    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.
  11. CHfather

    My 1st Post, Re: Dancing w/ the Devil

    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.
  12. CHfather

    Has melatonin made CH worse for anyone?

    A couple of other people have had the feeling that they got worse attacks on nights when they took melatonin. Melatonin is quite low in people during their CH cycles, and it has affects on regulating activity of the hypothalamus, so that's why it is recommended, and probably why for some people it works very well.
  13. CHfather

    Zolmitriptan spray - how fast does it work?

    missing . . . To repeat Jon's question: Do you have oxygen??
  14. CHfather

    My Face Hurts

    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. CHfather

    My Face Hurts

    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. CHfather

    Happy Holidays and thank you

    Thanks, Jimmy. Best to you, too.
  17. CHfather

    My Face Hurts

    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.
  18. CHfather

    Hello (First Post)

    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%.
  19. CHfather

    Amitriptyline... Anyone heard of it?

    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
  20. CHfather

    Amitriptyline... Anyone heard of it?

    Freaking barbaric. What is wrong with these people!?! If they're actual tanks, you can buy a regulator that will go up to 25lpm. But as you suggest, if they're small tanks, they won't last long. Eventually you might wear down the oxygen supplier, who will tire of constantly having to replace them. Or you can switch to using welding oxygen, as many people do. There was someone else on the board just today or yesterday who was prescribed amitriptyline. It is not a first- or even second-line preventive, at least as far as I know and have read. You know about the D3 regimen? Your best bet for long-tern prevention. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Meanwhile, I guess you know that you ought to be looking for a different doctor, preferably at a headache center. I just looked at the old recommended doctor list that posted here. Sadly, none in Iowa.
  21. CHfather

    Hello (First Post)

    The thing about the pacing, etc., is that it's true, as FunTimes said, that not everyone with CH does it, but almost all do. Things are a bit is different when there's a pretty reliable abortive like oxygen on hand, because that does calm some of the anxiety and distress (and pain) that are part of the reason behind the pacing. But everyone who has been here who has had migraines or other severe "headache" pain and also has CH says that there's no confusing those things with CH, because CH pain is so very much worse (the exception might be forms of hemicrania, which at their worst can be at stratospheric pain levels like CH). Yes, a very high percentage of people with CH smoke (and, FWIW, a very small percentage of people with CH develop lung cancer--the incidence of lung cancer would be expected to be much higher than it is among so many smokers, many of whom are pretty heavy smokers). People with CH who quit smoking don't get relief of their symptoms (a couple of people here have said they thought maybe their symptoms got a little lighter after they quit).
  22. CHfather

    Hello (First Post)

    Brian, I'm sorry to say that I have no insight. Too much going on here for me to perceive anything that might be helpful. I will tell you that people don't "grow into" CH from other "headache" conditions, which seems to be something you're worried about. Yes, people with other "headache" conditions do have or develop CH, but that's like a tenth of a percent of all people with those conditions. Our equivalent here to "take two aspirin and call me in the morning" is "you should probably try the D3 regimen." I have no reason to think it would help you, except that it seems to help with quite a few conditions, and it's essentially nonharmful. You can read about that here: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Maybe others will have better insight. Wishing you the best.
  23. CHfather

    My Face Hurts

    Verapamil is standard preventive treatment for CH. Usually people start pretty low and increase dosage (with heart monitoring). It usually has no effect at first, which is why people are sometimes given a course of steroids to ease the pain while the verapamil (hopefully) kicks in. I know you said you think steroids made your condition worse, and I'm not doubting you, just saying that's the standard course. Many people here have had relief from verapamil at high doses (using the immediate-release kind, not extended release), and many people here feel that verapamil was harmful to them in other ways. Sometimes the dosage has to get up over 900mg/day before it becomes effective. Nortriptyline is a tricyclic antidepressant. It's sometimes prescribed for tension headaches, but is not any kind of standard therapy for CH. I hope you get your O2 sorted out and that it helps, and that you get some clarity and appropriate treatment on Tuesday.
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