Siegfried Posted January 10, 2020 Share Posted January 10, 2020 (edited) Hello friends, The first 10 days of my indomethacin trial are behind me. I started to take it 10 days ago when a new barrage of attacks started. I was advised to take 150 mg/day when they started and continue for 14 days. When they started I took 100 mg and normally when they start, the intensity is ramping up one after the next and the background pain as well until it becomes unbearable and need Zomig to temporarily abort it or oxygen to make it livable. I can stand the entire thing without abortion for a maximum of 4 or 5 hours. I am usually on one 10 min attack every 30-60 min non-stop for around 3 days. Now with the indomethacin it was different. Started to feel an improvement already after an hour - attacks became bearable. Around the 6th attack it got worse again and I had to clench my teeth and bite myself through the pain but also this faded away. Next day I had a rather mild background pain the entire day and no attacks which never happened before. The next day in the morning, the attacks came back through but after the 3rd one it all suddenly stopped and the cycle was over. This was probably due to the long time between the last indocin pill in the evening and the first in the morning the next day. I feel that the indomethacin works for around 7 hours and then the pain creeps back through. All the days that followed were completely painfree except when there was more than 7 hours between two doses. Then the background pain came through again but was very fast erased with the next doses. This is also unusual as I have never had a single day completely painfree. So for me this is a very good result and that is definitely the best preventive I have used until now - comparable with prednisone. Abortive qualities are nearly similar to Zomig. However I do not consider the result definitive yet. I can still not believe indomethacin should work for me. I want to do another trial later in the year. I just came out of my 1,5 month remission and the headaches have not yet reach their maximum. If I have the same effects during August/September, then I will be convinced indomethacin is the solution. From a diagnostics perspective, I let it to the doctors to draw their conclusions. Can be they reclassify me as having paroxysmal hemicrania (CPH) instead of CH, which should be more in line with the symptoms I am showing. Have a nice day ! Edited January 10, 2020 by Siegfried 1 Quote Link to comment Share on other sites More sharing options...
kat_92 Posted January 10, 2020 Share Posted January 10, 2020 I attempted to take indomethacin for a few days but the side effects were so bad I didn’t even notice any change (good or bad) with the headaches. I was so dizzy (almost felt super drunk), throwing up constantly, it was so bad. But I’m thinking of asking my new neuro to prescribe it and come up with a different plan for me because I’d like to try it again. I’m glad it’s working for you! Quote Link to comment Share on other sites More sharing options...
Siegfried Posted January 10, 2020 Author Share Posted January 10, 2020 1 hour ago, kat_92 said: I attempted to take indomethacin for a few days but the side effects were so bad I didn’t even notice any change (good or bad) with the headaches. I was so dizzy (almost felt super drunk), throwing up constantly, it was so bad. But I’m thinking of asking my new neuro to prescribe it and come up with a different plan for me because I’d like to try it again. I’m glad it’s working for you! Hi Kat, This is also my second attempt. I tried it a week before this trial and it also completely failed and had to discontinue after 2 days. After the second day, I woke up ill like a dog and started vomiting until in the afternoon. Then it got better. Now for this second trial, I did not have this side-effect. Only terrible pain in my stomach the first 3 days but that went away. I take Pantoprazole to protect the stomach. Now I am completely fine. Dizziness I have occasionally and it last around 30 min but I am fully functional so no big deal. I also took a more stringent approach. I have 3 doses per day so I keep as close as possible to one doses every 8 hours. Taking the pills with a glass of milk + some food is also better than take them with just a glass of water I feel. I read it can take up to 7 days to work so you have to give it some time to become fully effective. With me it took around 5 days to really kick in. Also the recommended doses are different. For CPH 150 mg/ day should be sufficient but for HC, they often need to go up to 225 mg/day. 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 10, 2020 Share Posted January 10, 2020 Thank you very much for this thorough update, Siegfried!! And I am so happy that the Indo seems to have helped you!!! Quote Link to comment Share on other sites More sharing options...
spiny Posted January 10, 2020 Share Posted January 10, 2020 So happy that you are getting relief Siegfried! Keep us posted please. All info is important for the group. Quote Link to comment Share on other sites More sharing options...
Zoejarvis Posted January 15, 2020 Share Posted January 15, 2020 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 1 Quote Link to comment Share on other sites More sharing options...
MoxieGirl Posted January 15, 2020 Share Posted January 15, 2020 On 1/10/2020 at 3:01 PM, kat_92 said: I attempted to take indomethacin for a few days but the side effects were so bad I didn’t even notice any change (good or bad) with the headaches. I was so dizzy (almost felt super drunk), throwing up constantly, it was so bad. But I’m thinking of asking my new neuro to prescribe it and come up with a different plan for me because I’d like to try it again. I’m glad it’s working for you! I found that taking it with food helped A LOT. Taking it on an empty stomach, and I had similar results: dizzy and feeling nauseous. But, with food it was fine. Mox 1 Quote Link to comment Share on other sites More sharing options...
Siegfried Posted March 15, 2020 Author Share Posted March 15, 2020 On 1/15/2020 at 12:52 PM, MoxieGirl said: I found that taking it with food helped A LOT. Taking it on an empty stomach, and I had similar results: dizzy and feeling nauseous. But, with food it was fine. Hi Moxie, Did indomethacin did something for you ? I found that 150 mg did not confirm completely but 225 mg absolutely stopped all attacks. But it does not play good with my migraine and therefore it is not a real solution. Quote Link to comment Share on other sites More sharing options...
Siegfried Posted August 18, 2020 Author Share Posted August 18, 2020 On 1/15/2020 at 9:57 AM, Zoejarvis said: I dont know how similar Paroxysmal Hemicrania and Hemicrania Continua are? 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 2 Quote Link to comment Share on other sites More sharing options...
spiny Posted August 18, 2020 Share Posted August 18, 2020 Thanks for attaching the two articles. Nice info to have here. 1 Quote Link to comment Share on other sites More sharing options...
trjonas Posted April 21, 2021 Share Posted April 21, 2021 On 8/18/2020 at 3:46 AM, Siegfried said: 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 I also trialed indo at the suggestion of other (wonderful) folks on this forum. It took 2-3 weeks of titrating up to 225 mg but I did have a partial response of about 50% improvement, which, since I've been at a 10 since late January, felt WONDERFUL. I assume that because I only partially responded, I must also have an underlying condition of CCH or chronic migraine, but now you make me wonder, @Siegfried! Thank you for posting about that. It's possible that the longer I stay on the indo, the more I'll respond. Also, I'm now busting to try to get out of this 10 cycle or exacerbation or whatever it is, so that could be playing a big part. I think it is because I just had my third dose and I'm seeing cumulative effects paired with the indo. I've had zero response to oxygen. But because my HC or CCH is constant, I have no idea when the onset of a hit is, and other clusterheads say oxygen is only effective if taken at the beginning of a hit. As far as I can tell, the beginning of my current hit was on January 29, 2021, and if so, it's waaaaay too late for oxygen. (Today is April 21, 2021) However, I've also had almost no side effects from the indo. As @MoxieGirlsays, I always take it with a lot of food, especially high-fat food (studies say this helps amp up the response to indo) and from the beginning I took a whole bunch of herbal gastroprotectorants: ginger, marshmallow root, great plaintain, arteminsin with it. I just added 20 mg Prilosec with each dose at the advice of my neurologists' PA (physician assistant). For anyone with HC who can't tolerate the indo, try Gliacin. I know a LOT of people on a HC Facebook support forum who use that successfully instead of indo because they too had terrible side effects from the indo. Gliacin is a formulation of the herb boswellia and was developed by a doctor with HC. It takes longer to respond to it (up to a month) but it comes without most of the side effects of indo. Check out the research on his website: https://www.gliacin.com/. @kat_92@Zoejarvis Quote Link to comment Share on other sites More sharing options...
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