Posted by Bill on May 02, 1999 at 19:49:06:
In Reply to: cluster headaches posted by Jim on April 28, 1999 at 17:30:15:
I have been a CH sufferer for 15 years. When they
first startedI suffered 3 months if headaches and
5 months off, and the cycle started again. The CH
were 3 to 5 per day or night and had a definite
rhythm. After 2 years a sympathetic doctor put me
on medical oxygen which was a God sent relief.
The Oxygen relieved the pain in less than 15 mins.
I use 6 to 7 litres per min. flow, and within
5 to 7 mins the pain starts to disappear. As soon
as the pain finishes stop the oxygen or you may
get what is called a 'rebound' headache.
After reading some of these messages on CH, I can
only agree that the pain is terrible and it is a
wonder that any of us survive.
I have kept detailed records on all of my Clusters
showing the date , the time, the severity of each
and the duration, of each headache, along with any
medication I was taking at the time.
Currently, I am taking the following medication,
which has reduced, in some cases, the Cluster to
only 2 weeks duration and my 'free' period has
been extended to 13 months.
The medication is as follows:
1. Verapamil - 240mg per day
2. Ganglia nerve block
My experience says that regardless of what you do
the Cluster must start on its cycle. The
verapamil extends the 'free' period between the
clusters, and the GNB may actually stop the
cluster after it starts. I have also used cafergot
to relieve the pain and it works well for me, plus
it gives a bonus of stopping headaches for 24 to
48 hours.
Very few doctors may know about the Ganglia Nerve
Block, but it is worthwhile tracking down a doctor
in your area to try it. My experience says you
need a minimum of 5 GNBs on consecutive days.