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Indocid anti-inflammatory regime

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JackyV

(Member)
From: BROADMEADOW
23 total posts
Currently suffering :(
Hi all,

My neurologist has started me on a treatment of Indomethacin (brand name Indocid) for aborting my bouts of CH. He described it as an older style anti-inflammatory drug, and highly recommends it for aborting CH. So far, I'm 3 days pain free on the regime. Given during a bout I usually never get more than 1 pain free night, things look hopeful. I post this to a) spread the word for any fellow cluster heads who may be seeking new treatment and b) ask if anyone else has had success with this drug and any side effects on the treatment? My Dr told me they can damage the stomach lining and has given me Nexium to counter-act these effects.

Peace.
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Fraser Coast Neurology

(Member)
From: Hervey Bay
21 total posts
Not currently suffering :D
I would be interested in your progress. I have never used Indocid for Cluster Headache. I started using it with Periodic Hemicrania about 35 yrs ago (use described in 1976).

If you have pure cluster headache,success would be unusual.

Many patients have mixed features, the most common being Cluster headace and migraine.

Keep up your post

Fraser coast Neurology
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JackyV

(Member)
From: BROADMEADOW
23 total posts
Currently suffering :(
Hi there.

Thus far the Indocid seems to be working. If I start taking it after I have a headache event, I don't have any re-occurence and don't have any for quite some time. That's taking it for between 3-5 days as I'm trying to avoid taking them for any longer than that.
My medical diagnosis is for "Cluster Migraine," I don't know if that's any different to cluster headache, but I'm sure you could shed some light on that.

Cheers.This post was edited on 02/01/2017 at 10:43 pm
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Fraser Coast Neurology

(Member)
From: Hervey Bay
21 total posts
Not currently suffering :D
I suspect that you have a Hemicrania variant and not cluster headache.

Look up periodic recurrent hemicranias on Google and see how many of your features fit that pattern.

The whole area is covered in the International Headache classification as Trigeminal Autonomic Cephalgias.

Indocid is NOT covered by the PBS for headache. I recommend my patients se their chemist and find out the cheapest way to buy ,ie frequently cheaper to get 100,or 200-instead of 50.

I currently have a hemicranias patient requiring about 100mg a day;150 mg is not unusual.

Avoid the term cluster migraine; certainly migraine can be periodic ,menstrual ,allergy related, etc.
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JackyV

(Member)
From: BROADMEADOW
23 total posts
Currently suffering :(
Googling that gives information regarding Chronic Paroxysmal Hemicrania, is that what you're referring to?

The symptom list fits apart from the amount of events per day and the attack duration. It's unusual that I'll have any more than 1 attack per day, rarely 2. My headaches usually last 30 minutes to an hour and a half.

I bought my indomethachin in bulk, 2 packs of 100 per script fill. That with the nexium cost me around $20.

I've only used the term "cluster migraine" because that's what my neurologist wrote on my diagnosis to give to my employer. I've suffered migraines also and know they aren't the same. Just relaying information from a professional, as I am not one.
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Fraser Coast Neurology

(Member)
From: Hervey Bay
21 total posts
Not currently suffering :D
Thank you for the tip on prices ;very important with these disorders. With only one (or two attacks a day ,lasting 40 mins or so; I would put more money on Cluster as being the main culprit.

However ,there are mixtures with all of the headache disorders.

On the information given ,I would classify your case as Indomethacin Sensitive Cluster Headache.

Has your Neurologist suggested an occipital nerve block??
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JackyV

(Member)
From: BROADMEADOW
23 total posts
Currently suffering :(
No problem.

No such suggestion as nerve blocks, I've only recently been diagnosed (within the last 3 months) so my Dr is just seeing how the current treatment regime works out, thus far it seems to be working well.

Nerve blocks may be needed in the future, but for now I'll maintain the treatment I'm on.

Thanks muchly for your counsel.
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JackyV

(Member)
From: BROADMEADOW
23 total posts
Currently suffering :(
Just an update on this treatment a few years on.

The indomethacin was effective for one bout of clusters, and only half effective for the next, then not at all. I kept taking them in the hope they would work, until I started getting stomach pains and painful reflux symptoms.

Reviewing this with my GP, she prescribed suppository Voltaren once per day. Abortive medications and oxygen.

I'm also on batchs vitamin D3 regime which has had decent results in at least reducing the severity of my CH. Currently in the start of a bout and waiting for the D3 regime to hopefully take effect again.This post was edited on 22/10/2019 at 10:55 pm
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