Had a 6 monthly review from neuro today and I have been Px Indomethacin...didn't have my trex Px stopped just wondering if I can still take my trex jabs when things get bad??

I have had a look on the Internet and all I can find is that it benefits rheumatoid pain and gout!!!

I have got to give the indomethacin a trial for  couple of weeks if it does nothing then I can have O2.

Indo. has been a old time 2-3rd rank treatment for Cluster but it has never been an especially effective med.

Still, if you must play this game as the entrance fee to oxygen, play a good game....

I understand that, by law, you have the right to be referred to any headache clinic you wish. You may wish to join your excellent support group so that you can obtain better guidance re. your health service.

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My impression is that many of your general practice docs have poor skills/knowledge about Cluster. We regularly read reports of out of date treatments and poor diagnostic skills. The folks at OUCHUK can guide you are locating a near-by clinic.

Knowing how effective oxygen is, I'd jump through whatever hoops you need to get to it. It's crazy that it is so hard to get such an effective abortive.

Hi Bob
I didn't mention in the first post that the neurologist is referring me on to a headache specialist.

Believe me I am willing to jump through however many hoops it takes to get me on the correct treatment pathway.
Thanks (as always) for taking the time to reply
:) Sue

Hey Sue,
I'm wondering how this is working for you after a few days to a week?  Curious and thought others might be also
Linda

Hi Linda
I have had to wait for the GP to do the Px for me, so picked it up today, straight to the chemist and now have 2 boxes of indomethacin ready and waiting......I have to say after a particularly rough couple of months my head is behaving itself (I'm sure it wont last)!!!
Thank you for asking
Sue

Sue: Indo is a wonderful med for a variety of issues but it can be hard on the stomach depending upon dose and duration of use. Much individual variability, too.

So, if you begin to get daily stomach distress, tell the doc. There are meds which will help protect your stomach even as you use the Indo.

The biggest problem with the uk medical system is the amount of time it takes to get appointments.

It took 6 months for a neuro appointment to come through after re-feral by which time I was at least 2 months out of cycle.  >:(

Anyhow good luck Sue I hope all goes well in your quest for the O2 holy grail.

God bless

Nigel

Thanks Nigel...it is becoming something of a quest now! I will get there eventually.

Bob the pharmacist was very insistent when I picked the meds up that I must eat something before I take the indo because of the side effects, so far I have only taken 150mg in total, I have been Px 50-100mg every 12 hours at the onset of an attack.
Last Thursday I took 50mg with little or no effect then took a further 100mg, not sure if it is coincident but the 'beast' hasn't been to visit since Friday but it could just be the end of my cycle....fingers crossed.  :)

Paroxysmal hemicrania is very similar to CH and indomethacin is 100% effective in stopping it.  Everyone should try indo to eliminate the possibilty they are dealing with CPH instead of CH.

I have had gout several times and it's wonderful for that, but didn't work for CH. It's also tough to tolerate on the stomach. Luckily, it cured my gout in several days before it hit my stomach too hard. When I tried it for CH, I couldn't stand it beyond 2 weeks and it did nothing for my head, yet killed my stomach. The only, only upside is, it's really cheap. Good luck.

Hi All,
Just a quick update and a query,

I was pain free until Wednesday night  :( (a grand total of 6 days), and was visited by 'the beast' again last night.

My question is...I have assumed that I take the Indo as an abortive, is that right? or do I have to take it regularly??
Take care
Sue

Your Dr. should advise you but for CPH it is taken daily as a preventive.

Hi Bob,
I am so good at only giving half the information!! sorry!

I have been advised to take 50-100mg at the onset of a cluster attack, repeat every 12 hours.
I haven't been able to find any relevant information regarding using it as an abortive.
I have had another 100mg today and it's not touched it, hoping the beast takes its leave as I am going out tonight and he ain't invited!! :)