CHfather

"Redneck bag": https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/

My daughter has been using 5-Hour Energies with good success for aborting (along with O2) for many years. Sometimes her attacks break through and last a long time (couple of hours), and she often uses more than one 5-Hour Energy. That many 5-Hour Energies, as many as four or five a day some days, makes her feel pretty crappy. About a week ago she just couldn't take another 5-Hour, so she went with some coffee she had sitting around. Got a very fast abort with it and O2. Since then, she's been using coffee and consistently aborting pretty quickly (~10 minutes), and her gut feels 100% better. I suppose it's possible that like other meds, too much of whatever's in energy shots might turn out to be counterproductive. (Or, as you all know, it could be any number of other things. For example, she was taking hemp oil for the CBD right about until the time she switched to coffee; so maybe the oil/CBD was making things worse instead of better.) She doesn't use triptans or any preventive except D3. She's also been drinking ginger tea every day for about a week. Maybe that has something to do with it.

Thanks for reporting about this, F'T'! Every bit of information helps.

https://www.docguide.com/sphenopalatine-neuralgia-independent-neuralgia-entity-pooled-analysis-case-series-and-literature-rev?tsid=5 "The clinical characteristics of SN [sphenopalatine neuralgia] might mimic cluster headache with the exception of cluster pattern and treatment response to oxygen. The typical duration of pain episodes in SN was several hours to several days; and in some cases, pain was persistent."

These are the first published results that I have seen from the big questionnaire-based study that Larry Schor and others carried out, which many people here contributed to. Nothing particularly shocking to us, but very important that it's out in the medical community. Thank you, Larry and others!!!! https://www.docguide.com/effectiveness-oxygen-and-other-acute-treatments-cluster-headache-results-cluster-headache-questionna?tsid=5

Here's the basic tea recipe: https://www.thespruceeats.com/homemade-ginger-tea-3377239

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.

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.

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)?

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.

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).

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.

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.

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.

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.

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?

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).

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.

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.

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) Tags: Pain Management Read/Add Comments | Email This | Print This | PubMed | Get Full Text 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.

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.

Sorry . . .

Any updates on CBD oil?

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

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?"