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18 Jan, 2011 - 8:21 pm

Hi All,

Not sure whether this information has been posted before, as it is not that up to date. Therefore apologies in advance if this is old news...

Anyway just watched Professor Peter Goadsby, who is possibly the world's leading researcher into CH, giving a talk on about the condition on YouTube from 2008.

Lots of useful information, however, an area I found interesting was how the length of time to being formal diagnosed with CH has dropped in the 50's (up to 20 years) and in the late 90's (2 years). In my case 3 to 4 years. So this means that GP's and Neurologists are now much more aware of the condition than they were previously.

Anyway if I understood correctly Peter's preferred medication options in 2008 as presented on his slide were:

Abortives:
Oxygen 100% @ 10/12 L/min
Sumatriptan 6mg s/c injection
Sumatriptan 20mg intranasal
Zolmitriptan 5mg intranasal

Preventatives:
Verapamil (industrial strength) to 960mg/day or until effective

In regard to above Peter strongly advises that those on high dosage Verapamil - have an ECG 10 to 14 days after a dosage change after exceeding 240mg, and then every 3 to 6 months there after, as can slow the hearts A-H interval.

Please accept that I present the above information as I understood it from Peter's talk, it may not work for you, I am not a GP, and as always seek you GP's advice before considering any of the above medications.

FYI. I have just reviewed the medication stats on our website and we strongly favour
Topamax
Prednisone
and other preventatives over Verapamil

Whilst the American version of our website favours
Prednisone
Verapamil

Hope this helps

Cheers
Guy

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27 Jan, 2011 - 10:23 pm

Guy, I couldn't agree more with your suggestions, i have had similar experience. Sufferer for 14 years, diagnosed formally after 11 years.

Just started another period, 2 weeks ago, moved from NSW to Perth and only today managed to get oxygen cylinder from Air Liquide. Been on Verapamil for 2 years and has all but stopped the attacks, have had 2 short periods with only minor attacks in that time.

Now got a full blown cluster period in session, not as bad as pre verpamil but 6-8s rather than 8-10s so far and still nasty.

My best tricks are:

Verpamil 240SR 1/day- worked until now at least.

Oxygen- 12-15l/minute through a good mask. Definitely my favourite and best treatment but only partially effective. Mind you i have had a collapsed lung 3 times and no idea of it is just a coincidence, the doctors say not but I just don't know.

Summatriptan injections- expensive but often effective

Caffeine- 4-5 espresso shots or 2 red bulls but only effective if caught immediately at onset and not 100% of time. Still painful after but a lot more manageable. Also if you need to keep going through a tough day at work, a steady but high caffeine intake usually staves off an attack.

And my usual pain relief strategy- 2*paracetamol, 3*nuerofen zavance and 10mg of endone (oxycodone) when i can get a doctor kind enough to prescribe it.

Biofeedback can work and so can a hot shower but not all the time and not on their own.

Another trick is to get someone to pinch very tightly the flesh between your thumb and index finger about 1cm in from the edge. You'll know the spot. It is an old chinese pressure point and can be amazingly effective in taking the edge of the really sharp waves you get on an 8-10 strength one.

There is also a muscle cream called Fisiocrem that has natural herbs in it. Slather it on your shoulder, neck and head after a hot shower at onset. Not sure how much it really helps but it feels amazingly cooling and seems to take your mind off the worst of the pain a little.

If you know a sympathetic doctor or specialist in Perth I'd be very grateful for the intro.

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