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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Indomethacin rollercoaster
        
(Message started by: mc_ashes on Mar 20^th, 2008, 8:24am)

Title: Indomethacin rollercoaster
Post by mc_ashes on Mar 20^th, 2008, 8:24am

My new neuro has taken me off Topomax and started me on Indomethacin. Getting off the topomax is all to the good as far as I'm concerned. However, my experience to date with Indomethacin as been very frustrating. The taper to full dosage occurred at 2 day increments at the following dosages (50 mg, 75 mg, 125 mg, and 150 mg/day). Starting out I thought I might get some relief using this drug. But by the second day at 75 mg/day the beast was back to his usual buisness. Then after going to 125 mg/day I again got some relief (headaches were of a lesser intensity and fewer per day). At 150 mg/day I actually got about 30 PF hours in a row. I was thinking my cycle had finally ended after 49 days of misery. Then last night, BAM!, I get hit at midnight, 3am, and 5:45am. Now I'm just ANGRY! NO, the cycle hasn't stopped. NO, the new med ain't giving me any lasting relief.

If I wasn't trying so hard to control my tongue these days we'd all be exposed to a "tapestry of profanity" not heard since the dogs ate chrismas dinner in the movie Christmas Story.

Has anybody else had similar experiences with Indomethacin? Do I stick with it longer in hopes of some lasting relief? What's next?

I'd just about rather have the freaking HA's everyday, on schedule, than false hope every third day only to be smacked down the following day. I do much better knowing what's in store for me than I do with the disappointment comes after finding nothing's really changed after a day or so of hope. Arrgghh!!!!

Mark

Title: Re: Indomethacin rollercoaster
Post by Bob_Johnson on Mar 20^th, 2008, 8:54am

Indo. is used for one subset/type of headache and not for cluster. If it has not become effective by the end of this long run up I would not expect any improvement.

Has the doc given you a diagnosis of Cluster? If yes, giving this med suggests that he is quite out of date on treatments.
_______________________
Curr Treat Options Neurol. 2008 Jan;10(1):30-5.
Update on the therapy of the trigeminal autonomic cephalalgias.

Lenaerts ME.

Marc E. Lenaerts, MD Headache Section, University of Oklahoma Health Sciences Center, 711 Stanton L. Young Boulevard, #215, Oklahoma City, OK 73104, USA. marc-lenaerts@ouhsc.edu.

The treatment of trigeminal autonomic cephalalgias requires very careful attention to clinical aspects. It is important to spend enough time assessing the patient to arrive at an accurate diagnosis. Identifying trigger factors (eg, alcohol), when applicable, is part of the therapy, as behavior modifications may be necessary. CLUSTER HEADACHE treatment should never be delayed; patients should be able to visit the clinic within 48 hours to expedite medication initiation. Abortive therapy typically is best achieved with nasal oxygen, sumatriptan injections, or both. Typically, a steroid taper is begun and will be continued for a few days. A prophylactic agent such as verapamil or topiramate also is initiated immediately and will be taken for a period slightly beyond the expected duration of the last cluster period before an attempt is made to taper it off. For CHRONIC CLUSTER headache, lithium carbonate is recommended after a few weeks if these other treatments have failed. If more than three regimens of medical therapy fail, patients should be considered for neurostimulation procedures. PAROXYSMAL HEMICRANIA most often responds to indomethacin. Failure may be due to a dosage that is too low. Gastric protection should always be given, because this medication has a high rate of gastric complications. Short-lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing (SUNCT) remain very difficult to treat. Lamotrigine is the first recommendation. Overall, one of the most crucial aspects of the management of patients with these disabling headache syndromes is patient education regarding what their disorder is and the reasoning behind the therapeutic options offered.

PMID: 18325297 [PubMed]
_____________________

These links reflect the most current standard of care for Cluster:

http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting
everything following. com/ and then hit enter.
====================================================================
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive
and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.plainboard.com/ch/chtherapy.pdf

Title: Re: Indomethacin rollercoaster
Post by John Michael Smith on Mar 20^th, 2008, 10:12am

Indo is for CPH not CH.

Title: Re: Indomethacin rollercoaster
Post by mc_ashes on Mar 20^th, 2008, 12:00pm

My first neuro gave a firm diagonsis of cluster headaches (after two visits), but she has left town and I had to find another Dr. This new Dr. (I've only seen him once) said he was not ready to accept the initial diagnosis and wanted to take a "broader view" of my condition. He suspected headaches known as 'paroxysmal hemicranis' type, and thus wanted to test my response to Indomethacin...

I guess we know now that my HA's are not of that type... I'm not real pleased with "lab rat" role I seem to be playing. But what else am I to do?

Thanks for the input.

Mark

Title: Re: Indomethacin rollercoaster
Post by Bob_Johnson on Mar 20^th, 2008, 2:54pm

Mark, since there are no clinical/lab tests for CH and the symptoms of CH are no always clear, we are all subjet to some sorting thru possible diagnoses. It's not a sign of bad medicine but, to the contrary, a mark of good practice.

"Life is short, the art, long...judgment is difficult. It is not enough for the physician to do
what is necessary...the circumstances must be favorable." --Hippocrates

Title: Re: Indomethacin rollercoaster
Post by Gator on Mar 20^th, 2008, 5:00pm

We are all medical crash test dummies, Mark. There are no tests that say, "You have CH." There is no one specific treatment that works for all sufferers. With CH, all you can really do is keep trying different things until you find the thing that works for you.

If the doc suspects you have CPH, Indomethacin is the first line drug. Indomethacin can be used up to 300mg. If you only went up to 150mg, you may not have gone high enough to find an effective dose.

Thanks for quoting the article, Bob. Dr. Lenaerts, is my neuro and a damn good one as far as I have seen. I'll have to see if I can talk him into giving up a copy of the full text.

Title: Re: Indomethacin rollercoaster
Post by Karla on Mar 20^th, 2008, 11:19pm

I took 300mg and in 3 days was pain free. This lasted for five months then it was ineffective on me. I have tried it off and on over the years only to find it still doesn't work for me.

Title: Re: Indomethacin rollercoaster
Post by Bob_Johnson on Mar 22^nd, 2008, 10:45am

Karla's experience is all too common re. meds stop being effective. Over the years that I've been hanging around this has been a regular comment and reflected in the medical literature also.

The only response is: 1. to keep abreast of the latest developments, even if your present meds are working well; 2. approach CH without anger and a readiness to start a new round of exploration if your success disapppears.