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BluesFan85

Indomethacin?

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Okay so I started to see a neurologist yesterday and I'm going to be seeing her about this from now on.  So I went yesterday and told her what's she said it's obvious I have cluster headaches and it was nice to talk to someone who seemed to understand what I'm talking about.  Anyway she wanted me to try Indomethacin and see if that helps.  From what I understand I maybe wrong I don't know but, does this drug actually help with CH's?  Has anyone taken this before?  She wants me to try it out and call her on Tuesday to let her know if it helps at all and if not we'll try something else.  I don't have much hope since most drugs I've taken haven't really helped but still in the back of my mind I'm somehow hoping this helps me.  If anyone has tried this or got any info about it I'd greatly appreciate any insight, thanks!  At least if this don't work I still got some Zomig NS left and getting another box on Monday so thank god for that!!!

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Denny is generally correct, but there are some studies that show that CH is sometimes responsive to indomethacin.  Here's one abstract (below).  So, it could be that since you seem to be someone who has been "refractory to the usual therapy for CH," your doc is giving you the indomethacin to see what happens.  If it works, no matter what condition you have (CH or one of the lookalikes), you've learned something valuable.  Note what's in the conclusion about time and dosage for CH patients.  Indomethacin is hard on the gut for most people.  It's often prescribed along with something protective.  As I say, there are some other publications that also mention indomethacin sometimes working for CH.

From: http://journals.sagepub.com/doi/abs/10.1177/0333102409357642?journalCode=cepa

Introduction: Response to indomethacin is an essential feature for the diagnosis of both paroxysmal hemicrania (PH) and hemicrania continua (HC). Cluster headache (CH) is widely considered to be a disease unresponsive to indomethacin.

Case reports: We report four patients with CH who responded to indomethacin. Two patients, who were refractory to the usual therapy for CH, fulfilled the criteria for chronic CH. Conversely, two patients had a history of episodic CH and showed response to both indomethacin and the usual therapy for CH.

Literature review: We also reviewed the literature for the presence of indomethacin response in patients with CH. We noted a large number of cases labeled as CH by the authors which showed a response to indomethacin.

Discussion: Many cases of definite or possible CH were wrongly labeled as PH because of patients' responding to indomethacin.

Conclusion: The response to indomethacin in patients with CH may not be as immediate as in other indomethacin-responsive headaches, and many patients may need larger doses.

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I took Indomethacin for a few months when I was getting rebound headaches from Anadin and needed an alternative pain killer. It did nothing for my cluster headaches, but would stop a headache.

Be aware, it will mess up your stomach, so eat something before taking it. You will feel really rough if you take it on an empty stomach.

You are now entering what I think of as the 'experimental' stage in your diagnosis. Your neurologist will likely keep trying you on lots of different things over the course of this year, Indomethacin, Amitriptyline, Topiramate (aka Topomax), and others. I forget the long list of stuff I tried before I threw it all away and turned to shrooms and seeds.  

Not trying to put you off your neurologist, this is just standard procedure. It's just non of it worked for me or the side affects were to much. 

 

MG

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I've had good results with Indomethacin.  If I take it at the first sign of a shadow it will usually tame the shadow and prevent it from getting worse.  When I'm in cycle I also take it before bed.  It seems to calm the brain and I get a much better night's sleep.  Once the pain level goes past a shadow it's usually not much help.

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Moxie girl is right, Indomethacin really messes up some peoples guts.  Some people can avoid the problems by taking it with food but others have a problem with it no matter what.  One thing that has been shown to help with the stomach problems that indomethacin can cause is guarana.  This is a caffeine containing nut from South America and is easy to find online.  The caffeine might even make the Indomethacin work better.  

  https://www.ncbi.nlm.nih.gov/pubmed/14669256

 

-Ricardo

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I was put on Indo after triptans failed to do anything for me, and found it was actually highly effective for awhile - as long as I popped one when I felt a cluster starting up, it cut it from my usual two weeks down to about one, and only the first two or three days were severe, rather than the whole period being pretty much the same.

Sadly this seems to have stopped now because the last few weeks have been hellish. But, yes, it can be a good thing for some of us. I can't say I had any problems in the gut from it, but I'm on lansoprazole for acid reflux anyway.

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