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Indomethacin Test Gave False Hope


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A few weeks ago a co-worker sent me an article about someone who had a dramatic and immediate end to her headache pain with the drug Indomethacin (Indocin).  She had right-sided headache pain that sounded a lot like the clusters I've had this round, including the cluster-migraine I've been getting for a full day after nights where I have multiple clusters.  Her headaches were diagnosed by the effectiveness of the drug as Hemicrania Continua. 

Although I was diagnosed with Clusters 13 years ago, my symptoms this cycle have changed a bit and this is by far the longest cycle I've had.  So I thought it couldn't hurt to give it a try.  Amazingly I went 9 nights without a cluster.  I had some shadows during the day but nothing that woke me up at night.  I was ecstatic!  With a multitude of drugs, 2 Vitamin M busts and 4 seeds busts I had only managed to have 3 pain-free nights in a row in the last 3 months.  This seemed very significant to me.

Unfortunately it didn't last.  Thursday night my streak broke and I've only had 1 good night since then.  I didn't have my O2 with me so I had to use a Sumavel shot Friday night.  And then today I had a full cluster attack at work, even after increasing the Indomethacin dose. 

My neuro said there was no way it would work for me, particularly since O2 aborts my cluster attacks.  He seems to think the 9 days were a fluke due to changing weather patterns.  Ugh. 

Does anyone know if Indomethacin will unbust?  I have a new batch of Iamshaman seeds I'm ready to try again.  Has anyone had initial success with Indomethacin, only to have it stop working?  Looking at the research, there seems to be at least a few reported cases of Indomethacin-Responsive Cluster Headache. 

Any other experience with this drug?  Side effects?  I've been on it for a few weeks and so far no evil side effects as long as I take it with food and Zantac.  Long term use is probably bad news.   

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I just found the "Playing Well With Others" link and it looks like NSAIDs (Non-Steroid Anti-Inflammatories) are ok.  Indomethacin is a type of NSAID so I should be ok to give the seeds a shot by Wednesday since I did use a shot Friday night. 

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Indo should be OK with busting.

Who knows why Indo worked for a while, this condition can be quite weird sometimes.  In theory Indo should not help CH, but there are reports of cases where it does.   I thought it once stopped a cycle early (years ago), but it was useless the next cycle.

I usually get concerned when someone's headaches start changing, especially when new symptoms develop or things seem to be getting worse overall.   Keep your Doc appraised of what it going on, best to be safe.

Everything to know about Indo is here:  http://www.rxlist.com/indocin-drug.htm

side effects here:  http://www.rxlist.com/indocin-drug/side-effects-interactions.htm

GI problems seem to be common.


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I have to admit, I amazed that Indo is even allowed on the market anymore.  Here's one account of a 15 year old who almost died after taking THREE doses of 50 mg Indo.  It can give you life threatening problems that do not necessarily give any warning signs or symptoms and it can do it in one day.  How is this even considered a real option?


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Eek.  And I thought Indo seemed to be a much "safer" alternative to Lithium, which is the drug the neurologist has been pushing me to take the last 2 months.  I've been holding out on that one to see if busting would do the trick.

My headaches have been changing, new symptoms, etc. this cycle.  I've actually had some loss of vision in the eye on the side of my head where I get CHs.  So far this cycle (3 months +) I haven't been able to see a neurologist yet.  I have had 4 phone calls with him regarding meds.  But when I left the message about the vision issues yesterday apparently I said a magic word and I'm getting in tomorrow.  Amazing!  Hopefully that doesn't mean he thinks something is terribly wrong.  But I wouldn't mind having an actual face to face discussion with him and maybe it's time for a test or two.  I was diagnosed 13 years ago and haven't had any testing done since and this round is so different than the others. 

Thanks for your input guys!

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