Hello, My name is James :)

I'm 48 yrs old and from the UK. I first suffered from what I now know to be CH in February 2006, shortly after the birth of my first daughter. This episode ran until later August. My attacks varied from 4-8 a day. The severity varied alot, although not in a random manner. Rather my attacks would ebb and flow over periods of weeks, becoming slowly more severe, or slowly less so.
My attacks occurred very much at certain, predictable times of the day and night, an I could almost set my watch by these times. I say almost because these times would last a week or two, and then they may move to another time that itself would become predictable for week or two.
As with most people I'm sure, I went through a series of medical professionals in order to establish what was wrong with me, before eventually being advised to request that my GP refer me to the National Hospital for Neurology and Neurosurgery.
Due to their waiting list at the time, I wasn't seen by them until February 2007, by which time my episode had finished. I was diagnosed by descripting my symptoms alone.
Afew tests followed, including a CT Scan to check for aneurisms
Interestingly (as I have seen no mention of this medication on this site), I was prescribed Indometicin 25mg, along with Lanzoprozole (to alleviate any side effects of the indometicin)
I have found this medication to be fantastic for me!

Since 2006, I have had afew episodes, but until my current one, none have lasted more than 2-3 weeks, and have always been very mild. The worst of these occurred for 3 weeks over the Christmas period of 2010. My current episode however began in early August 2013, and shows no sign of abating.
I have read the horror stories of other's experiences with CH, but I don't consider that my suffering compares with this. I assume that my CH is on the milder side of things.
My attacks are always to the right side of my head, and are noted for the nerve pain fanning out over the right side of my head, that makes the whole area sensitive to touch; the profuse running of my right eye and nostril; not to mention the expected stabbing sensation around and above me right eye. My attacks rarely last more than 15-20 minutes though, the severe period, if there is one, only lasts 10 minutes or so. I find that I can handle this pain, because I know that it will not last long. But then, I don't think that my severity compares in any ways to that experienced by many others. And anyway, thanks to my medication, severe attacks are occurring at a rate of perhaps only 1-2 a week. Far harder for me to deal with is the 'Shadow'. If I forget my medication, by around 10am a cloud will descend upon me and I find it difficult to concentrate. It's kind of like having the worst possible hangover head. Some days I experience this even with my medication. I think that, without my medication, I would struggle to function on a daily basis, if I'm honest. So far, this episode has lasted for just over 6 months.
I would make one point to anyone in the UK. You can request that your GP refers you to any specialist in the UK. CH is a pretty specialist subject and whilst most GP's are aware of it, I think it's fair to say that few have a much greater knowledge than you or I. Ask to be referred to The National Hospital of Neurology and Neurosurgery. It may take time, but at least you'll get the best advice in the end
Secondly, I'd ask whether anyone else has had experience or knowledge of Indometicin as a treatment for CH?
Thankyou for reading this far! :D

Hey James,

Welcome to CH.com.  You've come to the right place.

Regarding indomethacin...  See the following link for the European Federation of Neurological Societies' Recommended Treatments for Cluster Headache and other Trigeminal Autonomic Cephalalgias.

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The EFNS Task Force that recommended these treatments is comprised of many of the leading neurologists in the world well known for treating patients with CH. They include Dr. Peter Goadsby, Dr. Arne May and Dr. Peter Sandor.  Their recommendations are summarized in the following table from the link above.

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As you can see, indomethacin is indicated for Paroxysmal Hemicrania...  not CH.

We've a number of CH'ers there in the UK who are taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 to successfully prevent their CH.

You can find the info on the supplements and dosing at the following links:

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I've also attached the Home Oxygen Therapy Order Form (HOOF) your NHS requires for approval and ordering oxygen as an abortive for CH.  Have your PCP or neurologist fill out and sign this form...

Having oxygen therapy handy to abort CH is a lifesaver for most of us...

Take care and please keep us posted.

V/R, Batch

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Good news that you were referred to a specialty clinic so soon in your experience. The major complaint we get from the UK is the lack of knowledge/skill in local doctors.

Indo. is used for a variant form of Cluster and works well. Do be aware that it can, with long use, lead to ulcers, so get your docs to advise how to protect yourself BEFORE any problems develop.

Hi there,
My neuro gave me indomethicin and it doesn't touch it. The different headache types (and there are many)all feel the same but respond differently to different meds. Indomethicin is the best treatment for paroxismal hemicrania but will not work for CH. For that, the best is sumatriptan - preferably injections, which likewise will probably not work for Para Hem. They are my best friend.

But even better is pure oxygen. When hyperventilated it has the effect of a vasoconstrictor. So it works as well as the sumatriptan but without the drugs.
This means I can abort as many attacks as I like with no danger as apposed to only being allowed 2 injections a day.  You must have at least 15 lts per minute and a NON REBREATHER MASK. Check out "oxygen info" yellow highlighted tab on the left of your screen.
Hope this helps
Maz

Thankyou so much for the welcome and all of the informative replies. I must confess that, Having read up on symptoms more, I obviously suffer from Paroxysmal Hemicrania, not Cluster Headaches.
I do remember the Consultant that I saw in London paid close attention to the duration and number of 'attacks'. My attacks rarely last longer than 15 minutes, but without medication they will manifest themselves around 8 or more times per day.
I believe that, here in the UK at least, my condition must be placed under the umbrella of CH. I can't imagine another reason that so many health professionals still refer to my condition as being CH.
As regards my taking Indometicin long term, I consulted my GP 2 days ago to discuss this. Indeed, my reason for posting here was to pick your brains and check what other pain releif was recommended. My GP has agreed to do annual blood tests to check, in particular, kidney and Liver functions.
I don't take and Prophylactic Treatment, or haven't until now. I will review this I think, due to the long period of this episode.
Thankyou so much to all of you! I am still re reading sme of your comments and will investigate further
:D