Author |
Topic: hmmmmmmm........i wonder????? (Read 407 times) |
|
rogerw
New Board Newbie
Gender: 
Posts: 7
|
 |
hmmmmmmm........i wonder?????
« on: Jan 5th, 2007, 5:32pm » |
 Quote  Modify
|
Hi fellow sufferer's
This is my first post to this website as a user (i sent a message a couple of weeks ago as a non-user) and decided that all of you have been going thru the same crap that i have been for 28 years off and on now. I have been telling my Doctors about this pain since i was 16 years old and have been dealing with countless of excuses and misdiagnoses up until my last episode (not counting the one that i am in now) which started in 2004 in the same month (December) in which the new Doctor advised me that these headaches are called cluster headaches and actually felt sorry for the fact that they were not correctly diagnosed before. The pain comes on so fast and furious behind my right eye that it feels like a brain freeze that last 1-3 hours and always wakes me up from a sound sleep at least twice a night. Oxygen has helped with the exception of 2 occasions in which the CH lasted for 5 hours. i havent had a full nights sleep in 3 weeks and am starting to show it with a bad attitude and i can not control it even though i tell myself to quit and remember that this isnt anyone elses fault. I just want it to end and feel helpless that there is nothing i can do to make them stop.
Sorry so long but it feels good to tell someone else that knows what i am talking about.
Best wishes to all of you
Roger
|
|
 IP Logged |
Best wishes
Roger
|
|
|
Jonny
CH.com Alumnus
New Board Hall of Famer
Give me a shovel Ill dig my own grave!
Gender:
Posts: 26213
|
 |
Re: hmmmmmmm........i wonder?????
« Reply #1 on: Jan 5th, 2007, 6:50pm » |
Quote Modify
|
28 years?
Can you give us a run down on what meds you have been on....what worked /what didnt?
|
|
IP Logged |
It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
|
|
|
George_J
CH.com Alumnus
New Board Hall of Famer
White-Breasted Nuthatch
Gender:
Posts: 4222
|
|
Re: hmmmmmmm........i wonder?????
« Reply #2 on: Jan 5th, 2007, 8:19pm » |
Quote Modify
|
That truly hurts to read. I think 28 years of misdiagnosis has to be a new record.
Welcome. Lots of different approaches available for treatment, now that you have a proper diagnosis. Tell us a little about what you've been prescribed so far, and what has/has not helped if you will. Glad to hear that oxygen has been of some assistance.
Best wishes,
George
|
|
IP Logged |
Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
|
|
|
rogerw
New Board Newbie
Gender:
Posts: 7
|
|
Re: hmmmmmmm........i wonder?????
« Reply #3 on: Jan 6th, 2007, 9:36am » |
Quote Modify
|
thanks for you replies.
When first diagnosed properly (1-13-05) (cluster started 12-24-04) by Michigan Head Pain and Nuero. Center the Doctor was very sympathetic for how long it was going on and did the following;
1. some kind of cluster blocker shot in the back of my neck.
2. perscribed Verapamil, Prednisone, and oxygen
as well as imitrex but pursueded me to not rely too much on as some kind of circulation problem exist's somewhere in my body...i think in my feet...cant really remember.
within 1.5 weeks the cluster left and i had not one other problem until 12-9-06.
I do not know if the shot helped with the cluster or it had just ran its course. Like i said i have been getting these since i was 16 years old and was always told that it was sinuses and to take Seldane....so whenever i started getting the headaches i would call and get another prescription of Seldane in which i thought was working because when i took it the headaches would only last 1.5 to 2.5 hours after taking it. i would explain to the Dr. that this is not an ordinary HA but to those who do not know or have not had them it would, i suppose be hard to imagine."it's just a headache and i had one of those once"....I find it hard to believe that someone had had a CH only once and if that is the case i would give my right arm to only have one "one time".....i just assumed that the Seldane knocked it out not realizing that the CH just ran its course and the Seldane actually did nothing.
I had been getting them off and on since age 16 but at a much longer time span between them...say from 3-5 years apart from each other and usually in the spring. I have never had them so close together i.e. 2 years apart like now and both times in December.
Right now I am on Verapamil, 02, and on my senond week of a prednisone burst....feel like shit....am really tired and crabby all the time....get nothing done because i will not start anything....i dont feel sorry for myself (except during a hit) but i think that lack of rest and sleep start to wear on you. Even when i am dead tired and starting to fall asleep i try not to because i know that i will be awaken up with a hit.
I truly think that it may be that the Cluster comes into our bodies due to a lack of sleep or an irregular sleep patern as this time i actually felt the cluster come into my body before i got my first headache....may be because i know about the cluster now. It was strange on the day that i realized that the cluster came back and told my wife that day that i felt it and sure enough that night it started. It seems that the cluster may start and end just like the headaches do. slow,slow,fast,bang,bang,bang,slow,slow gone. (2 hours of you life 3-4 times a day) I am assuming that the 2 nights back to back with 6 hour hits each night that 02 wouldnt help were the bang,bang of the cluster and it is down hill from here......one can only help.
Thanks for listenning.
Roger
|
|
IP Logged |
Best wishes
Roger
|
|
|
Kevin_M
CH.com Alumnus
New Board Hall of Famer
withered branches grow green again.
Gender:
Posts: 6184
|
|
Re: hmmmmmmm........i wonder?????
« Reply #4 on: Jan 6th, 2007, 9:52am » |
Quote Modify
|
on Jan 6th, 2007, 9:36am, rogerw wrote:| Right now I am on Verapamil, 02, and on my senond week of a prednisone burst.... |
|
In non-doctor opinion here, after two weeks the prednisone would be ending it's taper. You've mentioned verapamil, but how much have you tapered that up during this time.
I see the Imitrex is no longer prescribed it seems, give a little about your oxygen set-up and use, since that is your only abort posted.
|
|
IP Logged |
|
|
|
rogerw
New Board Newbie
Gender:
Posts: 7
|
|
Re: hmmmmmmm........i wonder?????
« Reply #5 on: Jan 8th, 2007, 5:59pm » |
Quote Modify
|
Kevin,
I have a large 02 tank next to my bed, i keep a portable tank in my vehicle and a 2nd portable tank at my desk at work. The 2nd burst of Prednisone was prescribed because i misread the original prescription and started it incorrectly.......... I went by what the nurse circled on my instructions and was told that was just to identify the quanities.....how stupid....whatever so they gave me another script and i have been on 4 pills each at breakfast, lunch and dinner to which i take 1 verapamil as well on each occasion. I was always slow to start the 02 as i used to convince myself that i wasnt getting a CH especially if it meant to get out of bed and get the mask and turn the tank on.....but after getting some bad ones......if i break an eyelash on the right side i am out of bed...tank on...mask on....and back in bed before my eyelash finishes snapping. LOL
so far since Friday evening i havent had a CH maybe because of the quick acts with the 02, but i do know that the cluster is still in my body as i still have that feeling that i think we all know just waiting for me to let my guard down so it can strike again.
thanks for your reply
Roger
|
|
IP Logged |
Best wishes
Roger
|
|
|
Guiseppi
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 2703
|
|
Re: hmmmmmmm........i wonder?????
« Reply #6 on: Jan 8th, 2007, 6:29pm » |
Quote Modify
|
I'll just second what it sounds like you already learned, start the 02 at the first hint. If I let the headache get started the 02 won't help and I have to jump to the trex jabs. Welcome aboard!
Guiseppi
|
|
IP Logged |
Why are all sensors, seeking intelligent life, pointed AWAY from earth?
|
|
|
rogerw
New Board Newbie
Gender:
Posts: 7
|
|
Re: hmmmmmmm........i wonder?????
« Reply #7 on: Jan 9th, 2007, 9:26am » |
Quote Modify
|
hey all!
There is supposed to be a website address to some article in which can be printed that explains CH that we can hand out to employers, ect....that explains what we are going thru? I have been trying to find it but can not as of yet.
Any of you know what i am talking about?
Roger
|
|
IP Logged |
Best wishes
Roger
|
|
|
rogerw
New Board Newbie
Gender:
Posts: 7
|
|
Re: hmmmmmmm........i wonder?????
« Reply #9 on: Jan 9th, 2007, 5:12pm » |
Quote Modify
|
Thats it!
Thank you very much!
I dont care how hard we try to explain this to people we just cant seem to get them to think outside of what they perceive as a headache nor do i feel like trying. This article says it all without me having to.
Thanks again.
|
|
IP Logged |
Best wishes
Roger
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss