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I feel compelled to post this so maybe it may help someone. I have suffered with Episodic Clusters for 25 year. My most recent attack started 2 months ago. I have been on emgality, verapamil, and divalproex. To break the clusters I went to 150 milligrams of prednisone, stopped taking divalproex, and started lithium. I was unable to break this cycle. As I started to titrate off of the prednisone I became desperate. For 25 years I have drank diet coke and diet pepsi. I stopped drinking diet coke/pepsi and in addition started taking apple cider vinegar with a little bit of honey and water twice a day. After 2 days my headaches stopped. Even my occasional after noon naps I did not wake up with a headache.....Then wanting to have something bubbly I bought a sparking water. My headaches came back! I didn't realize it had sucralose in it. I immediately stopped and my headaches have not come back..I don't want to give anyone false hope but if this can help somebody I would be happy. I back tracked to when my cluster began and realized I used to drink diet coke after playing racquetball. My wife told me how stupid I was drinking a diuretic after working out..I have read somewhere that sucralose and aspartame are not triggers but I don't agree.

@trjonas, that is dried. It is a whopping dose.

I have used oxygen for years now. My headaches are episodic so I sympathize with your situation. I use oxygen at the onset, as soon as you feel one coming on. With regards to using the oxygen you may want to bite the bullet and buy an oxygen machine. I would check online for one. It's been worth it to me. Good luck!

hi Leo...welcome to the boat.... ......aspartame is vasoactive and a distinct trigger for me... same as MSG in all its ubiquitous, mostly hidden forms.....none of the other artificial sweeteners, like sucralose, but folks with sensitivities to such would not surprise me..... ....have always believed a log of CH hits and cycles...recording timing, weather, location, and what you were doing and ingesting preceding same... can be determinative in narrowing down one's particular triggers. know of one doc who uses as a diagnostic tool the fact that cluster patients seem to do logging almost compulsively. makes sense as we try to figure out the beast...... best jonathan

Hi @Tony Only, Also, I just came across this today: Oral glutamine attenuates indomethacin-induced small intestinal damage https://pubmed.ncbi.nlm.nih.gov/15128285/ This study was done on rats, not humans, but it still might be worth a try. Here's an L-glutamine supplement from a brand I like (generally less fillers than others) on Amazon: https://smile.amazon.com/Pure-Encapsulations-l-Glutamine-Hypoallergenic-Gastrointestinal/dp/B000VYZG0O

If you're in Canada, yes you can. Both the dried product and microdosing capsules. Oh, and psilocybin edibles too, which I didn't even know were a thing.

P.S. I also wrote this in response to @Dipper, in case it helps your friend: Also in the meantime via Amazon... you may be able to alleviate some of indo's side effects by using herb / spice extracts. I know that might sound silly but I'm taking indo now and ginger has actually done the trick, at least at low doses. Turmerin is another I'm going to try, and I'm waiting for Marshmallow Root (coats and soothes the GI tract, guards against heartburn), plantago major / Greater Plaintain (counters irritation and inflammation in the stomach and bowels, combats gastritis, #3 :O, and can repair damaged mucosal tissue like the gut wall - I purchased a kind not made with Greater Plantain seeds, since its seeds can be a laxative which is not my intent), and Artmeisia (wormwood) which is said to prevent ulcers induced by indomethacin and has gastroprotective properties. I know the idea of herbs might seem kind of weak compared to formidable indo side effects, but I haven't found ginger to be so, and I had to detox off pharmaceuticals in order to bust (which I had just started doing when HC was suggested), and after the trouble of the detox from those, I didn't want to get back on another Rx to combat indo's side effects. Also, boswellia serrata (see my above post) is an herb, and it doesn't seem weak at all. Another person with HC on these forums was able to become pain free by busting, so that's another option, though he/she said it takes a pretty aggressive busting regimen to do it, as with CH. I hope your friend gets better! I so relate to the part about not know how much longer she can survive. SO much.

Hi, I know I'm late to this thread but if it helps I just wrote an answer to a post by @Dipperabout Gliacin, a specialized extract of boswellia serrata. I believe they will ship it internationally from the US. It is an alternative to indo that does much the same thing as indo, but takes a bit longer to work, and most importantly has FAR fewer side effects. Here's my post: I found a really good alternative that medical studies have shown could be as effective as indo, but without the side effects, though it takes longer to take effect. It's boswellia serrata and there's a doctor in Arizona who specializes in HC and who now produces a specific Boswellia serrata extract, Gliacin, that he has verified effective in HC patients (and sometimes migraine and cluster patients, but it works fastest in HC patients). Here are a few snippets from what I found: * Subjects with confirmed (demonstrated an absolute response to therapeutic doses of indomethacin) hemicrania continua (n=37) completed an extensive medical history detailing treatment efficacy, tolerability and safety that occurred while using indomethacin and specialized Boswellia serrata extract (SBSE) independently. Once at therapeutic doses, indomethacin took on average 3 days to become effective, whereas SBSE took 13 days. Migraine Disability Assessment Scores were 52 (pre-treatment), 20 (while on indomethacin) and 16 while on SBSE. Pre-treatment: 7.5 average pain / 30 headache days a month for HC patients Indo: 3.3 average pain / 13 headache days a month SBSE: 3.6 average pain score / 16 headache days a month respectively The overall perceived benefit score (0–10) of indomethacin was 7.7 and 7.8 for SBSE. Subjects reported side effects with indomethacin 72% of the time and 15% of the time with SBSE. Side effects with indomethacin versus SBSE were nausea (38%/8%), dyspepsia/upper abdominal discomfort (29%/4%), fatigue (25%/15%), insomnia (25%/23%), poor concentration (21%/8%), “spacey” feeling (21%/4%), poor memory (17%/8%), bloating (17%/15%) and dizziness (8%/0%). SBSE was void of adverse events whereas indomethacin was associated with easy bleeding/bruising (5%), anemia (5%), anaphylaxis (5%), gastric ulceration (5%), intestinal ulceration (5%), lower gastrointestinal bleeding (5%), hemorrhoidal bleeding (8%) and impaired renal function (8%). Source: https://n.neurology.org/content/94/15_Supplement/5250 * Boswellia extract may relieve migraine, cluster and indomethacin-responsive headaches. Boswellia serrata (Indian frankincense) has been long reported to relieve migraines The dose of Boswellia was 350 to 700 mg three times a day. All four patients failed at least three standard preventive medications for cluster headaches, such as verapamil (Calan), topiramate (Topamax), and lithium. It is very surprising that an herbal remedy helps what many consider to be the most painful type of headaches. Dr. Eric Eross reported that Boswellia extract was also reported to help another very severe headache type – indomethacin responsive headache syndrome. Of the 27 patients with this type of headaches who were given Boswellia, 21 responded. The starting dose was 250 mg three times a day and then the dose was increased as needed, although it is not clear what the highest dose was. Indomethacin is a very strong non-steroidal anti-inflammatory medication, but it also tends to have strong gastro-intestinal side effects. The mechanism of action of Boswellia is not entirely clear, but it seems to have anti-inflammatory properties similar to aspirin. Obviously, it does more than that since aspirin is usually ineffective for cluster or indomethacin-responsive headaches. Source: Written by Dr. Alexander Mauskop, http://www.nyheadache.com/blog/boswellia-an-herbal-remedy-for-headaches/ * This is more about cluster patients but just in case someone happens upon my post later and doesn't have HC: Extracts of Boswellia serrata have been clinically studied for the treatment of many inflammatory conditions such as osteoarthritis and rheumatoid arthritis (3). The resin from Boswellia Serrata contains a number of biological actives called pentacyclic triterpene acids, which give the extract its anti-inflammatory and analgesic properties, with boswellic acid the major active ingredient (4). These acids have been demonstrated to interfere with the body’s natural inflammatory response by inhibiting cytokines and leukocyte activity. The present study aims to evaluate the long-term efficacy of oral Boswellia Serrata (Sallaki H15) on headaches and disturbed sleep in (4) patients with CCH. The effects were long-lasting in 3 patients (mean 15 months) and transient (6 months) in one patient. The rapid improvement of nocturnal pain within weeks is similar to the analgetic effect observed in recent trials using Boswellia Serrata in cancer pain. The mechanisms of how Boswellia Serrata reduces pain in CCH remain unclear. Boswellic acids, constituents of Boswellia extract, have subsequently been identified as selective redox independent noncompetitive inhibitors of both 5-lipoxygenase, the key enzyme in leukotriene biosynthesis and human leukocyte elastase. Proinflammatory cytokines, such as leukotrienes, are known to play a role in the pathophysiology of CH. This study provides Class IV evidence that oral Boswellia Serrata (Sallaki H15) reduces the intensity and frequency of headaches in patients with CCH. Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3620238/  * The doctor's name is Dr. Eric Eross (the one who specializes in HC and developed a specific boswellia serrata for it). You can see much more info on his website at https://store.gliacin.com including recent research and testimonials by patients. (Sorry, I didn't save the home page link, just the store part of it) It takes a while for the Gliacin to arrive, though, so I ordered a 683 mg tincture and 500 mg capsules of boswellia serrata via Amazon in the meantime. Also, Dr. Eross will take emails from people wanting to ask questions about the Gliacin they ordered, how to take it, etc. The contact info is on his website but briefly, the phone number is 855.999.4542 and at least one of the email addresses is gliacin@live.com. I hope this helps you!

You guys are seriously great! You're such an encouragement to me, with all your help and your support. I feel like @Chris Moore said he felt after he had found you and this forum. I really, really appreciate you. Thank you @CHfather @spiny@Bejeeber @Chris Moore @jon019, and a thousand blessings to you for treating me so kindly and taking a newbie under your wings!

hi iv just started using truffles and to help with my CH because i could not get any shrooms as i was too slow to grow for this years episodes and could only find truffles to buy .. the web site i use is good as it grades its truffles to tell you what strenth and what kind of trip to expect but because i dont want to trip and just want the medicinal benifits i take a quarter of what should b taken for a trip and find this helps . i still get a few small episodes for a few days then nothing i thaught that i had been cured by the shrooms and thats why i hadn`t grown any for this year only to be caught out by the devil that is CH