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Title: Demon is Changing! Post by TBarger on Apr 15th, 2005, 7:14pm [smiley=huh.gif]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 [smiley=huh.gif] |
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Title: Re: Demon is Changing! Post by nani on Apr 15th, 2005, 7:17pm 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 |
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Title: Re: Demon is Changing! Post by TBarger on Apr 15th, 2005, 7:27pm 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 [smiley=huh.gif] |
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Title: Re: Demon is Changing! Post by nani on Apr 15th, 2005, 7:40pm 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 |
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Title: Re: Demon is Changing! Post by samsara on Apr 16th, 2005, 5:20pm 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. |
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Title: Re: Demon is Changing! Post by Lori on Apr 16th, 2005, 8:53pm 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. |
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Title: Re: Demon is Changing! Post by BarbaraD on Apr 16th, 2005, 11:49pm 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 |
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Title: Re: Demon is Changing! Post by sandie99 on Apr 17th, 2005, 10:09am 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 |
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Title: Re: Demon is Changing! Post by Langa on Apr 17th, 2005, 11:30am 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 |
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