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Hi all, Thanks to @xxx 's vitamin regime, I seem to be skating past my first cycle after taking an earlier version of the regime, and I thought I'd share my results so far. After my previous cycle about 6 months ago I started taking 10k/day D3 gel tabs plus the magnesium, Mature Multi, Super K, and fish oil supplements recommended (I see Batch has updated the regimen a bit recently, am currently looking into this) Due to Covid, I have yet to test my D levels, but I am planning to see my Dr for a followup soon. None the less, my usual cycles last 6-10 weeks of daily episodes. But so far I believe I may have clipped my current cycle to just one week of very mild headaches. Here's my log from when the cycle started: August 3rd: Woke with a shadow/Kip 1 at 8am. Oxygen for 5 minutes until PF August 5th- Woke at 2am. Kip 2. Oxygen for 5 min until PF August 7th Woke 8:30am . Kip 3. Oxygen 5 min until PF August 7th (2nd) 9pm. Kip 3/4. Oxygen 5 min then early sleep with shadows persisting August 11th 9:45pm Kip 2. Oxygen 8 min until PF August 12th 9:45pm Kip 3. Oxygen 5 min until PF So far no episodes since the 12th. Finger's crossed this cycle is over, which would be wonderful. Many thanks to @xxx and everyone else on here, I haven't been this hopeful in many years.

G'mornin ya'll!! Please take a few minutes to make a public comment about the efficacy of O2 in aborting clusters!! Although this is about coverage for Medicare recipients, most private insurers follow the lead of CMS! They'll be taking comments for 30 days! https://www.cms.gov/medicare-coverage-database/details/nca-tracking-sheet.aspx?NCAId=301&bc=ABAAAAAAIAAA Note: from what I understand this site is not IOS friendly so if you have any issues commenting from an iPhone that's probably why. Dallas Denny

@jon019 Good question bud....just sent Bob W a text to see if he has any input...I'll update my post when he responds! DD

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 Mox, Some things here after an exacerbation series: restlessness : like an extreme adrenaline rush, can go on for an entire night - like I do not know what to do with myself If it was bad and go to sleep, when I close my eyes, everything looks like lighten up (its not dark) and all kind of shapes start to appear, like crystals in blue, green colors. That can go on for a few hours after it wears off Feel cold and unable to heat up When I have the continuous background pain, suddenly out of nowhere, nose start to run and unable to breath through my nose like I am suddenly in the middle of a big cold. Can go on for an hour and that suddenly vanishes as unexpected as it came. All the best ! siegfried

Hey Siegfried, A vitamin D3 level of 85 ng/mL only helps a little over 50% of CHers prevent their CH. The rest need higher 25(OH)D3 serum concentrations up to 180 ng/mL as illustrated in the normal distribution chart of 25(OH)D3 labs reported by 257 CHers who reported a favorable response to vitamin D3 in the online survey. Granted, this data is from cluster headache sufferers not people diagnosed with hemicrania continua (HC). That said, there is ample evidence that HC shares most of the same pathophysiology as CH which means it should respond to the anti-inflammatory regimen with therapeutic doses of vitamin D3. I've worked with two HC sufferers who responded to the anti-inflammatory regimen. Both took the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 at one 50,000 IU capsule/day for at least two weeks before experiencing a significant and lasting reduction in the severity of their HC. They also took the Methyl Folate + vitamin B complex, which like the Bio-Tech D3-50 has a higher bioequivalence. As you've already noticed, indomethacin is hard on the stomach and GI tract due to bleeds. If you do continue taking it, experienced headache specialists familiar with indomethacin side effects suggest acid-suppression medicine due to this gastrointestinal side effect. Take care and please keep us posted. V/R, Batch

Hi Siegfried, I read your post about Indomethacin, it's great to read some good news on these kinds of forums. I too suffer from Hemicrania Continua, this was undiagnosed for a year until i saw a Neurologist and my doctor prescribed me Indo, he said, take this for 2 weeks and if it significantly reduces your attacks/stops them, then you will have a condition under the TACs Umbrella - HC,CH, PH etc... I took my first course of 1 25mg 3 times per day for 1 week and then increased my dosage to 2 25mg 3 times per day for a second week, this concluded my 'Indo time'. During this time i suffered only 1 attack and it was by far the most severe attack of HC I have ever experienced (ironic, right?). After I came off it, sure enough, my attacks were kept at bay for a month or 2 after i stopped taking the Indo - it was a huge relief and I was then diagnosed with Hemicrania Continua. That was back in summer, I have since had to go back on it as my attacks got more severe and more frequent. I stopped my most recent course around 4 weeks ago and my attacks have started again this week. I am waiting to see another Neuro to see what else can be done (likely nothing). I would continue on these stints of Indo to help my attacks, however, I suffer badly from the mouth ulcer side effect whereby after I have finished taking the Indomethacin, I get multiple (4, 5, 6!) mouth ulcers and they are incredibly painful and depending on location I cannot eat or even talk. I find my attacks always come on immediately after I stop doing something, i.e. housework, using a machine at the gym, walking up the stairs, taking a brisk walk from my car to my work in the rain... its like there is a build up of pressure in my head! I don't know... I suppose my particular interest in this post is that here we have people (Siegfried/Kat) who have tried Indomethacin and it has been successful, I was hoping to ask you guys if you have suffered these side effects and with your Paroxysmal Hemicrania - what are your triggers? I dont know how similar Paroxysmal Hemicrania and Hemicrania Continua are? Thank you all so much in advance! Zoe