Leaderboard

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 @Siegfried, I'm sorry for cross-posting this, but from my response to another person with HC taking indo on another thread, in case it helps you too... * I too thought I had cluster headaches but other kind and knowledgeable people on this forum suggested I might have HC, so who knows... yet. I'm trialing indo now, but I wasn't actually sure if I'd be able to get it, so I looked up alternatives. 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!

@trjonas, yes, I have what my neuro has described as a weird HC, because I have all the classic symptoms, but little to no response to indo. A few people have contacted me on FB recently regarding HC and busting. Are you one of them? My first name is Jessica. I am pretty much pain free with psilocybin. It took several heavy doses (5G) once a week to get the headache broken and pain free, and weekly doses of 1 gram keep me here. The pain free time only occurs at about a week at a time.

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.

@trjonas, busting does work for my hemicrania continua. It seems to require a rather aggressive dosing schedule, like many chronic CH suffers. I had minimal to no response to indomethacin. But I am resistant to NSAIDS. I can’t comment on the boswellia, because I was already mostly pain free by the time I heard about it.

trjoas, Bless you a hundred times for your perseverance and your positive mindset.

Hello Squizzlet, I am having attacks of paroxysmal hemicrania during my migraine attacks. Once the migraine reached a certain intensity, the hemicrania attacks start. They go around 7-10 min per attack with breaks ranging from 15 min up to 1 hour and can go on forever. If a PH attack is coming, the migraine disappears almost completely and once the attack is over, a few minutes later, the migraine starts to come back. Indomethacin only works for the PH but not for the migraine. Now I take candesartan for migraine and that works really well. I am on 16 mg. I had migraine attacks nearly every day and that now has diminished to once per two weeks. When the migraine is not there, the PH also stays away. So I would say yes it is possible. Problem is, currently migraine and CH are seen as two completely separate entities. That was not in the past. They called it sometimes cluster-migraine. I think cluster-migraine does exist and it was a more correct approach than what we have now. Why ? There are too many cases of hybrid migraine-CH but they keep on saying it does not exists. I have seen quite some neurologists and they all say the same. Very often, if a CH patient has also migraine, it blends together in a hybrid kind of headache with characteristics of both. I also can see that in the more recent studies, where the researchers have to admit there is neurological overlap between the two entities. Just ensure you have been through the entire protocol of CT scan etc... to be sure its a primary headache and there is nothing else going on. Anyway wish you all the best and hope you find something to keep it under control. That can take a long time but soon or late you will find something siegfried

Hi Zoe, Thanks for your reply ! I am very glad to see other people here with the hemicrania syndrome as there aren't that many around. Many people in this forum think they have hemicrania or show the symptoms but most of them fail the indomethacin test. From what I understand, paroxysmal hemicrania are short cluster-like attacks but no background pain in between. PH is almost always chronic but there is also a rare episodic variant. Hemicrania continua consist of 2 parts. A continuous background pain that is there nearly 24/7 and exacerbation on top of that background pain. These 'attacks' can look like whatever what. Sometimes they can mimic a migraine attack, a CH attack, a PH attack. I have the short PH attacks but I also have a lot of continuous background pain. At first the indomethacin only worked against the short attacks so it was labeled PH and the continuous pain was labeled as chronic migraine. But what do I see now ?? The longer I take the indomethacin, the better it works and it now also works against the continuous headache ! So maybe I have HC and not PH. I read a study lately (but can not find it back) that concluded that PH and HC are the same entity and often a patient can transform from HC to PH or backwards. I have a very good response with oxygen, which is quite weird. So currently oxygen and indomethacin is what I use. I used a lot of triptans in the past but these are barely working so I do not take them anymore. I seem to be pain free during long dry spells, like heatwaves. But once the weather become a bit unstable it starts again. We had a heatwave here for 10 days and I had only 2 days pain. but as soon as the low pressure kicked in, headache came back. Always wake up at night in the early hours with pain in my eye, like someone punched me. When I get up I do 20 min of oxygen which can bring relief for some time. If it is too strong, I take 100 mg indomethacin. It starts to work after 1,5 hours and keeps me pain free for 7 hours. If it comes back after 7 hours, I take another 50 mg. But I try to keep my indocin intake to a minimum so if it is not too bad, I try to keep it at bay with oxygen. I have always headaches, 24/7, 365 days a year. But it is mostly not so bad... more like a pressure on my eye or some kind of migraineous feeling. If I let it, it will get stronger and escalate into PH attacks or sometimes like strong jabs and jolts. Before I got indomethacin, I suffered much more. With the indomethacin, it is very good under control and fortunately I have very few side effects. I added a study here about HC and another one about PH ... one of the most detailed I ever found about the subject. Best Regards ! siegfried Hemicrania continua.pdf Paroxysmal hemicrania - a clinical study.pdf

Hi CH Father ! Thanks a lot for your responses and references ! Yes I read about melatonin before as treatment for HC and PH but haven't paid attention to it. So I think it is really worth trying and I will get melatonin and see what it does. I am on day 5 now and I feel it is running to it's end but the migraine is making it's entrance now. I know how to handle that one. So for indomethacin, I got the following: Day 1 -> 100 mg, Day 2 -> 150 mg, Day 3 -> 150 mg, Day 4 -> 175 mg, Day 5 -> 25 mg. And that should be it for this time. In my experience, coverage from indometacin takes around 6-7 hours and so during the gaps between two doses, the PH tends to reappear. I also know about GOM nerve block with medrol and lidocaine however it's a bit strange here. From the two major hospitals where I am for follow-up, one is doing it as a standard procedure and the other one not. I asked why and it seems to be a decision to go with a certain procedure or not. They will have their reasons why they don't do it. What I also experience is that the indometacin becomes more effective the longer I take it. This seems to be in line with most hemicrania patients that can diminish their doses over time. Thanks again and all the best ! siegfried

@kat_92 Yes I know, indomethacin can be though and it is actually poison. Once I cut open a capsule to see what was inside and it was a kind of white powder but when I put a bit on my tongue, my tongue was burned and saw red ! So not very healthy stuff ... I did the first indocin test 150 mg just before Christmas and I remember on Christmas eve, I was ill the entire day, pain everywhere, dizzy and vomiting the entire day. It was horrible but I did not want to give up as it is the only way to know what I have. So one week later, I tried it again and ... surprise.. no side effect what so ever. Only quite some pain in my stomach that last for 2 days but that went away. Now I can easily take 225 mg without any side effect ! So maybe you can insist to try it again. As happened with me, can be you react totally different on it when taking it a second time. The biggest problem is hemicrania continua, because it can look like everything else. There is an extensive study on the internet about it and they say the exacerbations can look like CH, PH, migraine, tension headache and SUNCT. So for people who have a continuous background pain with attacks that change character all the time, it is good to try the indomethacin to see what it does. I have also lots of background pain 24/7 with the short attacks superposed, so hemicrania continua was what we had in mind first but the indocin worked only on the short attacks but did nothing on the background pain. So that is why HC was ruled out and a PH diagnoses was made. The background pain is now believed to be part of the migraine spectrum or some kind of tension type related headache. Yes, an indocin cure can reveal/rule out quite some things. I have been very good for the last 2 month with very few headaches. I am sure it is because of the COVID lockdown that I am able to work permanently at home and life is more quiet and regular in general. Apart from getting some food and basic necessities, I haven't left my home since 10 March. 18 May some limited mobility will be allowed again. siegfried