Author |
Topic: Demon is Changing! (Read 360 times) |
|
TBarger
New Board Newbie
Love this place, and I am just ME!
 
Gender: 
Posts: 10
|
 |
Demon is Changing!
« on: Apr 15th, 2005, 7:14pm » |
 Quote  Modify
|
 Big Question, I am new to the board but not clusters, but, the dang thing is changing on me. I used to have one cluster a night 9pm or 2am, last an hour (I won't go into the pain, you all know) then gone. Now I am getting the pain a couple of times a day, and only for about 20 to 30 minutes, but the pain is much worst.....if there is such a thing......has anyone else had this happen and what can I expect? I thought I had this down to a science. Please please if anyone else has had this let me know....Thanks...Travis
|
|
 IP Logged |
Just when you think you're going to make it through a day.....Bam....The Beast comes a knockin!
|
|
|
nani
CH.com Alumnus
New Board Hall of Famer
Got kudzu?
Gender: 
Posts: 7953
|
 |
Re: Demon is Changing!
« Reply #1 on: Apr 15th, 2005, 7:17pm » |
Quote Modify
|
Hi Travis. Sorry you're having such a hard time. It's not unusual for CH to change. Some people have always had their CH be exactly the same, others (like me) are almost never predictable. What meds/treatments are you using? Are they helping? Have you tried ice or heat? Pain free wishes, nani
|
|
IP Logged |
Others may come and go, but MY power is MINE.
|
|
|
TBarger
New Board Newbie
Love this place, and I am just ME!
Gender:
Posts: 10
|
|
Re: Demon is Changing!
« Reply #2 on: Apr 15th, 2005, 7:27pm » |
Quote Modify
|
Thanks for the quick response. Meds, well I have tried the steriods, no luck, depacoat, no luck, dopa max, no luck....I am waiting for my doc to get my precription for O2, but other than that, I just grin and bear it!
Thanks again
Travis
|
|
IP Logged |
Just when you think you're going to make it through a day.....Bam....The Beast comes a knockin!
|
|
|
nani
CH.com Alumnus
New Board Hall of Famer
Got kudzu?
Gender:
Posts: 7953
|
|
Re: Demon is Changing!
« Reply #3 on: Apr 15th, 2005, 7:40pm » |
Quote Modify
|
Have you looked at the kudzu info? It really is helping some of us. It seems to help episodics more than chronics, but as a chronic...I'm having the easiest time I've had in almost 5 years. Tell your dr to hurry up. 100% O2, 10 - 15 lpm, with a non rebreather mask. Good luck...hang in there, nani
|
|
IP Logged |
Others may come and go, but MY power is MINE.
|
|
|
samsara
New Board Newbie
Gender:
Posts: 38
|
|
Re: Demon is Changing!
« Reply #4 on: Apr 16th, 2005, 5:20pm » |
Quote Modify
|
Mine recently changed, I was totally suprised cause like you, I thought I had this thing pegged.
I am out of cycle now, and am curious (not really.. ha ha) to see how the next cycle evolves and if it goes back to the old regular or does something new.
Good luck with the O2, hope it takes care of you well.
|
|
IP Logged |
|
|
|
Lori
New Board Hall of Famer
Gender:
Posts: 526
|
|
Re: Demon is Changing!
« Reply #5 on: Apr 16th, 2005, 8:53pm » |
Quote Modify
|
Well, for the first time in 14 yrs mine has changed also. I just started my cycle 1 1/2 weeks ago and I use to get hit always during the day starting with waking me up. Now, they are getting me at night. I hope this changes as I at least could sleep before.
|
|
IP Logged |
Blessings and PFDAN,
Lori
Psalm 23:4 ~ Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
|
|
|
BarbaraD
CH.com Alumnus
New Board Hall of Famer
Hugs to ya
Gender:
Posts: 5164
|
|
Re: Demon is Changing!
« Reply #6 on: Apr 16th, 2005, 11:49pm » |
Quote Modify
|
I'm chronic and mine change all the time. Sometimes I get hit repeatedly during the day and night. Other times, I get woke up with Mr. D. Then other times I just get hit at odd times. I quit trying to predict what Mr. D was going to do years ago. Like you said -- just grin and bear it. My meds quit working also.
I start with the onset (if I can get to it before it hits over a 5) with black coffee and O2. This will knock it sometimes -- 3 Extra Strength Excedrin sometimes helps but can't take that too ofter because of rebounds. Then as a last resort I pop the cafergot and phenergan (hate that stuff, but it works).
Good luck with the O2. It's really helped so many here.
Hugs BD
|
|
IP Logged |
What don't kill ya, Makes ya stonger!
|
|
|
sandie99
New Board Hall of Famer
Wish it, dream it, do it - inspite the pain!
Gender:
Posts: 10429
|
|
Re: Demon is Changing!
« Reply #7 on: Apr 17th, 2005, 10:09am » |
Quote Modify
|
Travis,
I feel for you. When I was episodic, I could tell what time it was once ch started. But now, as a chronic, I never can tell.
Finding good meds is difficult process which can last a long time. I've got good results from painkiller maxalt and abortative verpamil (although it does make me faint). I wish you good luck in the battle against the beast!
Best wishes,
Sandie
|
|
IP Logged |
CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
|
|
|
Langa
CH.com Alumnus
New Board Hall of Famer
So many donuts, such little time...
Gender:
Posts: 4179
|
|
Re: Demon is Changing!
« Reply #8 on: Apr 17th, 2005, 11:30am » |
Quote Modify
|
Hi Travis,
Sorry the beast is changing on you...
Definitely get on your dr's butt about the oxygen...it's been a great help to a lot of us.
Hang in there...
Langa
|
|
IP Logged |
When you saw only one set of footprints, it was then that I carried you.
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss