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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> Indomethacin
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Message started by trsixy on Jan 2nd, 2018 at 11:33pm

Title: Indomethacin
Post by trsixy on Jan 2nd, 2018 at 11:33pm
Started Indomethacin this week, no change so far. I've had regular headaches for 40 years, the clusters started 5 0r 6 years ago. Not sure if he gave me this med for cluster o . I'll post up after i see if the Indomethacin helps at all.

Title: Re: Indomethacin
Post by Peter510 on Jan 3rd, 2018 at 6:33am
If the Indomethacin works, it’s unlikely you have Cluster Headaches.

Your Neurologist should know this.

Have you looked into the D3 Regimen at all? It has made significant improvements in the lives of 80% of those of us who use it.

Read the following:

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Peter.



Title: Re: Indomethacin
Post by AussieBrian on Jan 3rd, 2018 at 6:42am
Indomethicin is a wonderful medication that creates miracles for people suffering certain types of headaches.  (I love the stuff.) 

Sadly it does remarkably little for Cluster Headaches other than to suggest that, if it does work, you may well have a completely different type of headache that really is quite manageable.

Importantly,  and it's real important,  you should have been prescribed a second pill to take along with the Indo that will protect your tummy.  Be sure to take it.

Please let us know how you're getting on because we really do care and will help in any way we can.

Cheers and beers,

Brian down under.            

Title: Re: Indomethacin
Post by maz on Jan 3rd, 2018 at 11:18am
I agree with Peter and Brian.  Indomethicin is great for another painful headache type, but does not work for CH.

Title: Re: Indomethacin
Post by UKJoeK on Jan 19th, 2018 at 11:14am

AussieBrian wrote on Jan 3rd, 2018 at 6:42am:
Indomethicin is a wonderful medication that creates miracles for people suffering certain types of headaches.  (I love the stuff.) 

         


Hi Brian, can I be really nosy and ask if you have CH and another headache type?  I used to have typical ECH but it's changed.  I'm in almost continuous pain these days.  I do get pain-free spells but they are rarely longer than a few hours.  I get what seem to be very mild CH attacks but it isn't like it used to be and a lot of the time it is just a steady pain.  My neuro wondered about HC but felt it couldn't be that because I get occasional pain-free spells.  So to date, I haven't tried Indomethicin but I wonder if I should push for it.

Title: Re: Indomethacin
Post by Mike NZ on Jan 19th, 2018 at 6:59pm
Whilst I'm not Brian, I do have a collection of headaches. The combination of several can make it complex for even headache specialists to sometimes work out quite what symptom(s) belong to which headache type(s).

This is where you really do need to work with your neuro as you'll find by looking at the IHS diagnostic criteria for the different headache types (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE), for example for primary stabbing headache (to use something other than CH):

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Quote:
Diagnostic criteria:
A. Head pain occurring spontaneously as a single stab or series of stabs and fulfilling criteria B-D
B. Each stab lasts for up to a few seconds
C. Stabs recur with irregular frequency, from one to many per day
D. No cranial autonomic symptoms
E. Not better accounted for by another ICHD-3 diagnosis.


All the ones I've looked at and probably all have the last line. It is reasonably straightforward to tick off the first few which rely on symptoms being present, but the last one is where the skills of a headache specialist come in.

Title: Re: Indomethacin
Post by AussieBrian on Jan 19th, 2018 at 9:51pm
G'day, Joe, and I don't think for a moment that you're being nosey.  The only way to find anything out is to ask and that's why so many of us are here.

Yes, certainly I have the joy of CH along with another type of headache thrown in just for fun.  Happily the other one reacts well to Indomethicin even if it's hardly an immediate cure like they say in the pamphlet.

It's long been my personal belief that anyone seeking a headache diagnosis should be offered the option of a 7-10 day trial of the stuff just to see if does any good but as our mate Mike rightly says, all of this must be done in consultation with a trained professional.

As to those very mild attacks that seem to last forever, I sometimes got them after a particularly long and brutal cycle as though my entire brainbox had been bruised for life.  I found that a half dose of paracetamol-codiene, washed down with a serious cup of coffee, would certainly take the edge things off but always being careful to protect the old tummy.

Again, these are purely personal opinions but it worked for me for a long time.

Full steam ahead and damn the torpedoes!

Brian down under.


Title: Re: Indomethacin
Post by UKJoeK on Jan 31st, 2018 at 12:20pm
Brian, Mike,

Thanks to both of you for your replies.

I'm currently on 480mg of Vera daily.  I've had 7-8 days much better days with huge pain-free periods.  I had a few beers on Saturday night as well without any problems but my shadows came back quite badly on Sunday. 

Today, I feel like I'm back to square one again with constant pain and CH-type shadows hitting very so often. No full attacks or anything.  I've had a cold for about 3 days which thankfully is well on its way out now, but I'm thinking the cold might have sent a flood of histamine into my system and this is causing problems.

I'll have to see how things go.  I've got an appt with my neuro in a few weeks and I'll be asking for an Indomethicin trial if the pain has become more constant again. The only problem is that I suffer with acid reflux.  It's perfectly well controlled but my headache team were worried about it and mentioned injections when the trial was mooted back in the summer.

Joe

Title: Re: Indomethacin
Post by Bally on Feb 15th, 2018 at 7:52pm
Hi all,

I'm late to the party as usual, but I thought I'd add my experience here in case it was helpful to anyone.

I'm officially a Hemicrania continua girl now, so different from CH, which is why I'm still be prescribed Indomethacin.

Even though HC is always Indomethacin responsive, alot of doctors will not allow it to be used as a preventative any more and they only allow low dose use during the final "attack" portion of a single HC episode (an episode for me is 2 days KIP 4, 3 days KIP 6, and between 1 and 3 days KIP 9 and 10 attacks and then we start over again!). It is just too hard on the rest of your organs and it doesn't play nicely with a lot of other conditions. When I pick up my prescription, the pharmacist always tells me, "Don't take a single pill more than you absolutely need."

I also don't find that the Indomethacin works 100% of the time and when it does help, it only lessens the pain somewhat.

I just wanted to add that because I expected miracles after it helped me the first time and was very disappointed. For the most part, I just use it to hold the pain off long enough to get to my bed.

It might work better if you can take high doses, but I don't get that many pills a month!

Sending pain free wishes all around!

Title: Re: Indomethacin
Post by Peter510 on Feb 16th, 2018 at 1:31am
Bally,

Thank you for a very useful and excellent post.

All headaches are horrible and it is good to hear from someone dealing with something other than Clusters.

Pain free wishes.

Peter.

Title: Re: Indomethacin
Post by maz on Feb 17th, 2018 at 6:09am
I had a neuro who insisted I had HC because women don't get CH. :o
He prescribed Indo to be taken when needed during an attack, and on a follow up appointment 6 months later when I told him it didn't work he changed it to a twice daily dose.  Another 6 months of hell later, when I told him it still didn't work, he said I probably hadn't taken it properly.  I don't know what else I was supposed to do other than pill, water, swallow twice a day as instructed. I insisted I had CH, and when my next appointment was due ( another 6 months) he refused to see me and palmed me off on his junior.
Fortunately for me, the junior was not only a woman, but a better doctor than her boss.  She diagnosed CH,prescribed CH meds, and I've never looked back.

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