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Everything posted by CHfather

  1. CHfather

    Gammacore Non Invasive Vagus Nerve Stimulator

    Frilling, did one or both of them try busting, as was discussed in response to your post last year?
  2. CHfather

    Benadryl to bust imitrex rebound

    Effective oxygen and the D3 regimen are your friends. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 If you do use trex again, consider splitting your doses: https://clusterbusters.org/forums/topic/2446-extending-imitrex/
  3. CHfather

    Pain / Symptom Tracking Apps

    Have you looked at this? Started by a fellow with CH, who persisted here for quite a while but didn't get much traction, and who still is persisting (I mean that positively -- God bless all those who persist in search of better treatment). He has a Facebook group, too. This tracks a lot of things, as I understand it, so maybe it's too much for what you're looking for.
  4. CHfather

    Is ch linked to dental work?

    What Freud says is basically correct -- as many people have learned the hard way, having work done on your teeth is very, very, very unlikely to help your CH. Serious tooth work (extractions, root canals) have indeed set off CH in a bad way for some people. Dealing with a cavity probably isn't at that level. However, the anesthetic used by dentists while treating a cavity or doing other tooth work has been shown to cause attacks for many people. Anesthetics containing epinephrine (such as Xylocaine) have been identified by some people as triggers. Ask your dentist to use something else: Prilocaine seems not to cause bad effects. Some people find that nitrous oxide ("laughing gas") is okay as an anesthetic (I remember someone here actually trying to get hold of some as an abortive), but some people have said it's a trigger for them. I think you dentist's office is likely to have O2 on hand (I've noticed tanks in my dentist's office). You might check into this (do they have it; tank size; flow rate; mask type) or bring your own O2 setup if you have a portable-size tank.
  5. CHfather

    New site search engine

    I'm thrilled to see the new search engine here. It will really be helpful -- so much better than what we've had. Thanks to whoever installed it! Right now, however, it doesn't seem to be working -- the response to every query I enter is "No Results." Is there some connection that's missing?
  6. CHfather

    Copying/pasting question

    Thanks, you two. FWIW, if I just copy the URL and then go to the chain link icon, I can then paste it into both boxes and it's all good. No clipboard intermediation required. I know I could also type text into one of the boxes, but I like my links here to be more in your face than that.
  7. CHfather

    Copying/pasting question

    I like to include links in my posts whenever it's useful. I find that at this site -- unlike any other sites I use -- I have to go through the process twice each time. Go to the link, copy it, go back to my message here, click paste. Nothing happens. Repeat the process and the link appears. If this is just something I'm experiencing, okay; if it's a fixable system issue, can it be dealt with?
  8. CHfather

    Portland Oregon sufferers?

    Monica, try sending a PM to 1961mom. She's in PDX, or maybe Eugene. She's a great CH advocate. Hasn't been at this site in quite a few years, but is still very active on Facebook. I'm not comfortable posting her actual name here, because that would defeat the purpose of anonymity, but if she doesn't respond to your PM promptly, let me know and I'll try to give you more info by PM. To send a PM, click on the envelope icon that you see when you scroll to the top of a page, then click on "Compose New," and type 1961mom into the "To" line. It might help a tiny bit if you tell her that CHfather suggested you should contact her. I'll bet she knows other people nearby to you. I lived in PDX for a few years. My favorite place to live in the country (I've lived in 8 different states). Sorry that you're suffering so much now. Also, please -- as Freud suggested -- tell as more about how you are treating your CH. We might have some suggestions.
  9. CHfather

    Oxygen concentrators?

    I'd suggest that you might as well get a welding regulator, which will go to 25 lpm and above. The small issue is that it doesn't have any actual lpm settings, so you have to feel your way to the flow rate you want. This is a very small issue. Maybe the $20 one at Amazon will work, but I guess I'd consider this one: https://www.amazon.com/Oxygen-Regulator-Harris-Large-Cutting/dp/B00WH3Q5N4/ref=sr_1_15?ie=UTF8&qid=1549467482&sr=8-15&keywords=oxygen+regulator+welding A small issue that can become a bit of a hassle is that you want one with a barbed fitting like the one in this photo to attack your mask tube to. Some don't provide that. You can buy an adapter at a hardware store or online if you get a reg without it.
  10. CHfather

    Oxygen concentrators?

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

    CCH surgery

    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.
  12. 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.
  13. 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
  14. 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."
  15. 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).
  16. CHfather

    Ginger for preventing or aborting?

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

    Ginger for preventing or aborting?

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

    Confused and out of whack

    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.
  19. CHfather

    Confused and out of whack

    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.
  20. 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)?
  21. 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.
  22. 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.
  23. 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.
  24. 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.
  25. 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.