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Topic: Tell me about indomethacin.. (Read 1144 times) |
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nani
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Tell me about indomethacin..
« on: Dec 1st, 2004, 4:29pm » |
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Anyone here take it? Does it work? Is it just for CPH or can it be used for CH? How about CPH and CH? Just need to know...
Thank you in advance. 
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Sylvan
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Re: Tell me about indomethacin..
« Reply #1 on: Dec 1st, 2004, 5:00pm » |
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Nani:
Someone recommended it to me just the other day - and i looked it up.
http://www.rxlist.com/cgi/generic/indometh_wcp.htm
It's an NSAID used for arthritis and bursitis. No mention in the product info about usung it for headaches.
Lots and lots of side effects and warnings too.
I have not used it so all i know is what i read.
Hope the info is helpful.
Sylvan
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unsolved1
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Re: Tell me about indomethacin..
« Reply #2 on: Dec 1st, 2004, 5:19pm » |
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Nani,
Indomethacin is said to be nearly 100% effective for CPH and not helpful for CH. Like I said in the other post, I believe all clusterheads should give it a try for at least 7 days. (You should know if it's going to help or not by then). I tried it more than once, no problems, no side effects at all, but no HA relief either. A small % of clusterheads who really have CPH or both with benefit from Indomethacin.
Unsolved
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pubgirl
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Re: Tell me about indomethacin..
« Reply #3 on: Dec 1st, 2004, 6:45pm » |
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Unsolved is right
In addition to PH/CPH, there are a whole host of the Trigeminal Autonomic headaches and other unilateral shorter-lived headache types which are known as "indomethacin responsive" i.e. will be stopped in their tracks by indomethacin. This is why most good neuro's use an indomethacin trial early on with patients as a diagnostic rule out. If it works, it works quickly i.e. within days, so the side effects (which are mainly gastric as they are with many NSAID's) are less likely or are manageable.
Examples of the indomethacin responsive headaches in addition to PH/CPH are:
Hemicrania continua, hypnic headaches, SUNCT syndrome, ice-pick headache/idiopathic stabbing headache, some of the exertional/coital headaches
N.B. Several of these headache types are reminiscent of Clusters, hence the value of the Indomethacin trial.
Wendy
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becky8
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Re: Tell me about indomethacin..
« Reply #4 on: Dec 2nd, 2004, 9:38am » |
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Nani,
I tryed it first, because agian I was being hit so fast and often, they thought it might be CPH (I was hoping) because it is suppose to work 99% of the time for CPH dIdn't work at all and I hope this doesn't happen to you but I triggered my CH and had the WORST regular headache I have EVER had too.You should know fast (a few days if it will work). GOOD LUCK TO YOU!!! I hope it does, you sure deserve it!!!
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sandie99
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Re: Tell me about indomethacin..
« Reply #5 on: Dec 2nd, 2004, 10:57am » |
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Nani,
last Christmas I was taking indomethacin for 3 weeks and I have never had that horrible side effect headaches in my life! It did nothing to my CH as a preventative.
Now my neuro said that it works to some CH patients as a painkiller. He suggested me that I should try it as such. So far I haven't, though.
Best wishes,
sandie99
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Gator
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Re: Tell me about indomethacin..
« Reply #6 on: Dec 2nd, 2004, 2:30pm » |
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Indomethacin is the first thing my first neuro tried. It did not work on the ch, but I never had any side effects with it, even at maximum dosage. My neuro did have me take the otc zantac 75 so it wouldn't screw up my stomach.
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pubgirl
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Re: Tell me about indomethacin..
« Reply #7 on: Dec 2nd, 2004, 3:48pm » |
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Sandi and others
It is very odd that neuro's are recommending Indomethacin for people whose Ch diagnosis is certain, and even more odd that they are saying it is an preventive AND a painkiller. It is usually recommended NOT as a treatment for CH, it is either a diagnostic rule-out of the shorter-lived headache types, or a treatment for them, not for CH.
In all the stuff I have read, and from all the people who are CH sufferers giving their experiences, I have only heard of two CH'ers who found Indomethacin of any use, but there are legion reports of people with the other headache types or confused symptoms who found immediate relief and thereby CH was ruled out and one of the other conditions ruled in.
Wendy
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lionsound
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Re: Tell me about indomethacin..
« Reply #8 on: Dec 2nd, 2004, 7:45pm » |
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nani,
I took indocin last month. It started out not as a headache thing, but as a anti-inflamatory or my neck which I pulled. (i had it to try for HA's in my med closet..the neck thing happened so I used it for that first) So my HA doc said to stay on it to see if it would help anything else. (I get 3 types of HA)
I never quite figured out if it helped my ice-pick-type HA's, or anything else, because it was too busy causing daily rebound headaches. The doc said that rarely happens. I must be special.  No more indo for me.
Anyway, I now have to live with the little jabbing buggers so I don't get the migraine rebound fun. Meanwhile...the CH is still...well.... there. I've been enjoying some PF time of late...no idea why.
If it works for you it would be great....just keep in tune with yourself.
-lionsound
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Renee
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Re: Tell me about indomethacin..
« Reply #9 on: Dec 2nd, 2004, 10:17pm » |
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I was prescribed indomethacin 10 months ago..for CH.
I discussed with my doc the indomethacin last month and he told me recent findings with indomethacin are positive for helping women with clusters, but not men. He said they do not know yet why indo IS helping women with CH and not men.
I have never had any side effects except a bit of fussing because I have to eat something every night when I go to bed and take my meds. Must take indo with something on your tummy.
If I miss a dose, I start getting shadows!
Good luck, whichever way you go.
Renee
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nani
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Re: Tell me about indomethacin..
« Reply #10 on: Dec 2nd, 2004, 10:26pm » |
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Quote: a bit of fussing because I have to eat something every night when I go to bed and take my meds. Must take indo with something on your tummy.
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Well, then, there ya go...forced to eat! Does it get any better than that? 
I'll be havin' the doc call it in tomorrow.
I'm tellin' ya, I'm just gonna keep gaining weight until I qualify for the gastric bypass. 
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Renee
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Re: Tell me about indomethacin..
« Reply #11 on: Dec 3rd, 2004, 7:11am » |
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I take 100mg 2x day. If you eat breakfast, which I don't, you could take with breakfast and with supper and not worry about eating at bedtime.
I take at lunch and bedtime. 
Some it helps..some is doesn't! At least its an inexpensive rx.
Good Luck!
modified cause I can't type today!!!
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| « Last Edit: Dec 3rd, 2004, 7:12am by Renee » |
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Redd
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Re: Tell me about indomethacin..
« Reply #12 on: Dec 3rd, 2004, 11:08am » |
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Before I saw a neuro, the GP scripted me with both the indo and Pred at the same time. The pred stopped the CH temporarily, and the indo gave me another noticable headace that lated 24/7 and made me so dizzy I couldn't stand or walk well...the 24/7 HA was easily discribed too...like a lightbulb filiment inside my head from temple to temple, and it would glow on and off and on and off.
That between that HA and the dizziness, I was so nautious I couldn't stand to eat even on the pred. Was not a good experience for me.
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Karla
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Re: Tell me about indomethacin..
« Reply #13 on: Dec 5th, 2004, 1:00am » |
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It was effective for me for 5months and kicked in at 3 days. It can be hard on your stomach.
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Karla
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miarella
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Re: Tell me about indomethacin..
« Reply #14 on: Dec 12th, 2004, 6:21pm » |
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Hello
I took indomethacin for 2 weeks during my last cycle. It didn't help at all with the HA. I don't know if it has something to do, but I had the worst shadows ever while taking it.
Take care,
M
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Bill-G
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Re: Tell me about indomethacin..
« Reply #15 on: Dec 12th, 2004, 11:11pm » |
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original from Nani
Tell me about indomethacin..
« on: Dec 1st, 2004, 4:29pm » Quote Modify
------------------------------------------------------------------------ --------
Anyone here take it? Does it work? Is it just for CPH or can it be used for CH? How about CPH and CH? Just need to know...
Thank you in advance.
I'm new to CH and went through several doctors who didnt seem to get it until A PA-C who was sitting in for the neurologist saw me. We had talked for about 10 minutes when she asked me to take my sunglasses off ( the exploding eye retains a wicked hate of bright lights after a nasty bout) She took a look and started writing in her notebook and informed me I had CH.
The Indocin is used,not as a preventative but as an aborter. It has to be taken IMMEATLY at the fist sign of Demons approach with at least 8 oz of water. The water helps diffuse the medication in the stomach which both protects the stomach and helps the stuff get into your system faster. So far I'm impressed!! Most ch are at the worst dropped or stopped at Kip 6ish and about 1 in 10 are stopped cold. I know if its working because within 10 minutes the increase in pain slows...stops and stats to drop over a 10-20 minute period. If nothing is happening I am allowed to take up to 2 more 25mg indocin at 5 minute intervals but 3 in a given day is the max so even with a resistant ch I never take the third. Its note fu when a fourth or 5th hits but its hope! also starting to see positive results after 2 weeks with Verapamil which I gather you are familiar with. If possible I also go on O2 for 15 minutes or so which is nice added counterattack and definetly helps reduce the secondary headache that always followed a severe attack
As said above immediate action is critical. The more momentum the demon builds the harder it is to stop. I hope to be driving again soon and will never be without a bottle of water and my lil vial of lifesavers
Hope this helps Nani. With all the help and encouragement you offer on these boards you deserve a break.
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Had heard about CH and wondered if anything could posiiblly be all that bad. Seriously thinking of having idiot tatoo done on my forehead now
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nani
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Re: Tell me about indomethacin..
« Reply #16 on: Dec 13th, 2004, 1:07am » |
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Thanks for the kind words, Bill. I am between insurances right now, but with info I received from filbert and unsolved, I was determined to try it. My "chronic" symptoms are much like CPH. I called my brother in law, who is an MD, and asked for a scrip. I explained all my reasoning and the info I had gathered. I started Fri afternoon...no shadows or hits that night. I took one on Sat AM one tiny k1 shadow for about 20 mins. Felt kinda cocky and didn't take one Sat nite. BIG MISTAKE. Woke up this morning with my regular k5 and got hit several times until this AMs indo kicked in. I've had one k2 shadow since it kicked in. I took tonight's dose. I'm a little hopeful that maybe my "chronic" CH might actually BE CPH. Maybe I'm episodic after all! My hubby says I shouldn't get too excited yet...I've been let down before...We'll see...
Thank you for all the input and fil and unsolved...bless you for bringing this possibility to my attention. 
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becky8
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Re: Tell me about indomethacin..
« Reply #17 on: Dec 13th, 2004, 1:06pm » |
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Oh Nani, I hope you're CPH because it really is suppose to do wonders for it, When I first was on this site, I thought maybe I had CPH too cause mine HA's were alot like yours. It didn't work for me at all, matter of fact it gave me a really bad regular headache. I was on it about 4 days and I couldn't stand it, so I called the Dr. and he said if it were going to work for me it would have already. It's suppose to work quick, so maybe this is it for you. I sure hope so you deserve it more than anyone I know. I'll be praying for you.
Wendy
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Bill-G
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Re: Tell me about indomethacin..
« Reply #18 on: Dec 13th, 2004, 3:22pm » |
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Just a word regarding the headache Indocin can leave you with.
Try O2 20 minutes or so after you have gotten past the benifits that both Indocin and O2 provided. I generally wind up with a whopper of a headache after the bout but find a second O2 treatment for 15 or 20 minutes can smack that down considerably.
That said, I was into my 3rd month at 4-5/day with at least 2 going off the chart. The secondary headache was a major relief!! Knocking that down to maybe a Kip 2 or 3 is bliss!
I don't remember if I mentioned that the Indocin did not work as a preventative...but... it can help to insure you can attend a gathering concert or whatever. I wait untill I'm ready to go into the event and take 1/25 mg to help 'insure' a couple or 3 hours without a major problem. It usually works. If, in the next hour or 2 the demon is still trying, a stong cuppa coffee chugged on my way back to the car for some time with my O2 bottle usually slams the door on the nasty bugger.
Hope Spings Eternal
Take care
BIll
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Had heard about CH and wondered if anything could posiiblly be all that bad. Seriously thinking of having idiot tatoo done on my forehead now
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becky8
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Re: Tell me about indomethacin..
« Reply #19 on: Dec 13th, 2004, 3:37pm » |
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No offense but why would you take something that made you have a regular headache on top of the CH? Two headaches for one kinda thing? Not trying to be smart ass just didn't get the idea?????
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Bill-G
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Re: Tell me about indomethacin..
« Reply #20 on: Dec 13th, 2004, 4:03pm » |
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confusing but it makes sense to me. hmm I'm ok.no your not! no really
I look at the headache I usually get from either the afteraffects of the CH and or Indocin as a good trade off against the full CH. I can deal with this secondary and dont end up digging little holes in my head over it. I can function, drive and have a life. Not a perfect option but its the best I have so far. Still hoping the Verapamil will end this but for now, it remains best option for me.
Take care
Bill
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Had heard about CH and wondered if anything could posiiblly be all that bad. Seriously thinking of having idiot tatoo done on my forehead now
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roro
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Re: Tell me about indomethacin..
« Reply #21 on: Dec 13th, 2004, 4:51pm » |
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I was given indomethicin. I guess I don't have CPH. I doesn't help me a bit but I did find out I cannot tolerate NSAIDS at all. My collitis flaired so bad after taking it for only a week that I lost 27 lbs. and came close to being hospitalized over it. Its potent stuff!
At least I know now there is no NSAIDS for me.
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Cluster_head
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Re: Tell me about indomethacin..
« Reply #22 on: Dec 16th, 2004, 6:37pm » |
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I was prescribed a course of pred/indo by my neuro during my last cycle (Fall '03). I didn't notice any benefit at all.
Neither my neuro nor my primary doc wanted to hear about what did work. I will probably never seek help from traditional medicine again...just a waste of time and money for me. Please pass the shrooms
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Marc
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Re: Tell me about indomethacin..
« Reply #23 on: Dec 20th, 2004, 11:16pm » |
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My experience with Indo:
- It can sometimes help reduce (not eliminate) a lower level hit IF I take 150mg at the VERY first inkling that one is coming.
- I tried it as a preventative - no luck.
- I've never had gastric upset or headaches from taking it.
- It makes me a dizzy/dingy if I take more than 150mg at a time.
I don't take it anymore because of its minimal benefits for me.
In general, I most certainly agree that it is not effective for clusters, and it is considered highly effective for CPH in particular. But I disagree that it has no benefit for any Clusterheads under any circumstances. I know a man who is chronic and can beat 75-80% of his attacks by taking very high doses at the earliest onset.
Those of us who have been around here for a enough years remember Jonny's Indo "bullets".
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| « Last Edit: Dec 20th, 2004, 11:20pm by Marc » |
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