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        New Message Board Archives >> 2003 Posts >> Here they come again
        
(Message started by: gills on Apr 18^th, 2003, 12:56am)

Title: Here they come again
Post by gills on Apr 18^th, 2003, 12:56am

??? ??? I have been PF for about 9 months now, about my usual PF remission. My eposodic sessions last for about 2 to 3 months, 1 to 3 times a day for about 2 hours at a time. Always yearly. Night time worse.

The shadows are coming again. May only be days or weeks until the beast revisits. I thought you might like to hear my routine.

1/ Verapamil until cluster breaks
2/ Mercendol Forte at first hint
3/ Triptan Injections self admin
4/ Stay stressed, relaxation is very bad.
5/ Keep off the alcohol, this is a relaxant.
5/ Try not to sleep
6/ Ambulance number on quickdial in case of need for emergency morphine shots.
7/ Keep reminding myself it will be over soon.
8/ Dance around and move my head around. Keeping still is very bad.
9/ Prey my left eye doesnt pop out.

This is no cure but sometimes it can take 1 or 2 KIP levels off. Unfortunately not all the time.

I would like to hear how any of you handle them.

Gills

Title: Re: Here they come again
Post by cluster0557 on Apr 18^th, 2003, 1:18am

Gills,

I have been chronic but when a cycle starts I already have been on Verapamil for a while.

My course of dealing with the beast is:

1) Take my prevents which are Verapamil and Melatonin.
Take at night 1 hour before bed. Take with sleep aid so that first rem cycle does not revery *friendly* person in Cluster.

2) If CLuster hits try O2 if not at 9-10 on kip. If 9-10 shoot Imitrex.

3) If O2 used and does not work then try Imitrex if Imitrex day. I use Imitrex 2 days on 1 day off. On off days I have IM injections of Nubain which kicks but.
If Imitrex does not work use Nubain as followup safety net.

4) When CLuster has me reall aggitated take My labrador retreivers out for walk at night only. If daytime go to basement and beat heck out of heavy bag.

5) Use deep breathing relaxation exercise

6) Repeat as needed.

Since chronic for so long no Alcohol worries quit drinking and smoking

Title: Re: Here they come again
Post by Callico_Kid on Apr 18^th, 2003, 1:18am

Sorry they are back!

The first thing I do when an attack comes is head for the computer and get online here and try to keep my mind totally focused on what is here. When I know it is going to be an upper level Kip I will get on a game that requires high levels of concentration and try to stay focused and do LaMaze type relaxation and breathing exercizes to stay ahead of the beast. If I ever lose concentration I dance and cry and pray and hold my head and curl up in a ball and try to turn myself inside out and try not to wake the neighbors. (Not necessarilly in that order ;D )

Fortunately I am able to keep most of mine to about a Kip 8 if I can keep my focus, and most of mine are on a very regular schedule.
jc

Title: Re: Here they come again
Post by don on Apr 18^th, 2003, 6:43am

Gee calico.

Maybe if you get a copy of "War and Peace" written in Arabic, read it upside down in a mirror wearing sunglasses you could be cured!

I just go in the bathroom and punch a wall.

Title: Re: Here they come again
Post by jonny on Apr 19^th, 2003, 12:28pm

on 04/18/03 at 01:18:21, Callico_Kid wrote:

The first thing I do when an attack comes is head for the computer and get online here and try to keep my mind totally focused on what is here.

WHAT?!!

HUH?!!

Your kidding, right?

.....................jonny

Title: Re: Here they come again
Post by Randn918 on Apr 19^th, 2003, 1:43pm

Cluster0057, how long have you been chronic?

Title: Re: Here they come again
Post by gills on Apr 23^rd, 2003, 5:24pm

Update on start of shadows and prediction from the 18/4/03

Just as I thought unfortunately.

Low level clusters began on the night of 22nd and 23rd. Only KIP 2 at this stage, nothing to cry about. The intensity will increase over the next month up to KIP 10 and increase from daily to 2 or 3 times daily.

****

Gills