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Cluster Headache Help and Support >> Cluster Headache Specific >> Indocin for Shadows?
(Message started by: crazydog on Jan 17th, 2006, 1:45am)

Title: Indocin for Shadows?
Post by crazydog on Jan 17th, 2006, 1:45am
Saw my Nero today and we discussed additional options to help with twinges (shadows) and background headaches.

Has anyone had experience with Indocin (Indomethacin), 25mg, 1 to 2 capsules as needed every 8 hours, for CH?

Title: Re: Indocin for Shadows?
Post by Bob_Johnson on Jan 17th, 2006, 9:00am
Not used for cluster; only for a sub-type which is relatively uncommon.

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH.  (2002)
 
http://www.brightok.net/~mnjday/chtherapy.pdf  

Title: Re: Indocin for Shadows?
Post by Svenn on Jan 17th, 2006, 9:07am
To prescribe indometacine for shadows in short terms INSANE.
Your doc is way out of line there as far as i can see

To use indometacine for CH.? Have heard rare stories that it helps but thats really rare.

Its mainly well known a the nr 1 medication for CPH/EPH
and thats all


Svenn

Title: Re: Indocin for Shadows?
Post by Karla on Jan 17th, 2006, 12:24pm
It is not for ch!  But for CPH.  Good luck in  finding a new dr.

Title: Re: Indocin for Shadows?
Post by E-Double on Jan 17th, 2006, 1:40pm
I was on indomethacin for over a year as a preventative for an additional headache type that I have along with Clusters.
It kept icepiks away but did not effect the clusters.
It was also a real bitch to get off of and caused debilatating rebound headache.

Title: Re: Indocin for Shadows?
Post by FramCire on Jan 17th, 2006, 3:16pm
Do you really want to be taking anything for shadows?  Honestly, I am so grateful for shadows (anything lower on the kip scale) that the thought of taking more medication for them seems strange to me.

Of course maybe that is because I am still only in week 8 or so, maybe later in the cycle I would want to treat shadows.

Title: Re: Indocin for Shadows?
Post by crazydog on Jan 17th, 2006, 4:18pm
Normally I don’t call them shadows. So maybe they are not the same thing. Typically what I am dealing with before a full out hit is deep piercing pain that travels from the eye or temple back toward the ear. Then I may get pain that will come and go very rapidly around the eye or temple that may last maybe only 5 minutes, maybe 10, or maybe 15 minutes. This may go on all day long and will increase in both frequency and intensity until I take on a full hit, typical sometime between 9pm and 11pm.

As for the question of do I really want to take something for shadows, well that is complex?

It all depends on the many hundreds of life variables. In short if I have a really good day and life is really good then maybe a day of this goes on without out much problem. On the other hand if my boss shits all over me, my bills are past due, …; well you get the idea, then yes I do want to take something for the shadows.

But don’t get hung up on that. Check this out. Here is some context that may help. It’s a summery of yesterdays doctors visit:

Changes
1) Indocin – Have had good results with Ibuprofen but can no longer take aspirin so Dr gave me this to try. If it does help then perhaps I may be able to reduce my over all use of Acetaminophen and Vicodin; thus, decreasing background headaches and twinges. Note! The druggist did not seem too impressed.

2) Verapamil – Increased to 240mg, perhaps this will break the chronic cycle.

3) 5mg Zomig Nasal – This is a new triptan that I am going to try. Yes I know not to take it within 24 hours of using another triptan.

Options
1) Pain Clinic – Pain clinic is one option but not a preferred one. Since I have found Mild narcotics to be quite helpful in managing CH pain it seems reasonable that learning better how to manage ones pain would be of value to long term treatment of chronic CH. But Dr is worried that clinic will unnecessarily dope me up too powerful narcotics.

2) Ergotamine – Dr is willing to go this direction if that is something I decide to do.

3) Psilocybin – Dr is also willing to let me go this direction if I so decide.

4) Imiterx Vial – Instead of using the StatDose system, which Dr agrees can be quite formidable; can prescribe vials of Imitrex, needles, and syringe. But would still have to overcome the fear of self injections.

All feedback is valuable and everyone benefits from the group’s openness to communicate.

Title: Re: Indocin for Shadows?
Post by FramCire on Jan 17th, 2006, 4:42pm
Be careful with narcotics.  I was under the impression that they can make things worse and/or cuase rebound headaches.  

your dose of Verapomil sounds like it could be a little low.  I think I am at 240 twice a day.


You do have O2, right....I am too lazy to scroll back up.


Title: Re: Indocin for Shadows?
Post by Jonny on Jan 17th, 2006, 8:33pm

on 01/17/06 at 16:42:21, FramCire wrote:
You do have O2, right....I am too lazy to scroll back up.


If thats the case, you should never EVER give advice on this board!!

..............................jonny


Title: Re: Indocin for Shadows?
Post by Karla on Jan 17th, 2006, 9:21pm
Please read the oxygen info link to the left <==.  It will abort your ch in 10-20 min at 8-15 lpm with a nonrebreather mask.  Definitly worth looking into.

Title: Re: Indocin for Shadows?
Post by crazydog on Jan 17th, 2006, 10:08pm
My Neurologist is probably more open than I give her credit for. She seems very careful not to discourage me from taking the needed space to work things out on my own. And she seems to realize that even having run a headache clinic for several years there is no magic recipe for our condition.

Accepting that I had CH was hard enough. Now I find that struggle with moving forward with finding the best treatment is even more difficult. The options are many. Very little is known about it. The specific characteristics of the disease and responses to treatments are extremely individualized. Even from one cycle to the next its behavior will change on you.

I mean how does one fight such a thing! I can see why its called the beast.

Sometimes I think forget it, I will suffer with the pain. Lol!

Wow how did I digress so far off track, oh well it feels good to get it off my chest.



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