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the end of an episode... (Read 1210 times)
oltwitchy
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the end of an episode...
Apr 27th, 2011 at 4:52pm
 
Hi folks,
Just curious as to if there are any signs that you are coming to the end of an episode. This past month has been the first cycle of CH that i've had so i'm not so experienced with signs and time frames.
The past two days i've been experiencing really mild CH (mild compared to the mind splitting pain before). Does this mean i'm at the end of my episode or does it mean it's just fixing to ramp up into something nasty again?
Also has anyone else had any luck in sleeping sitting up to ward off night time attacks. I'm not sure if it's playing a part as well but i've been night free of CH each time i sleep this way.

Any help would be appreciated!
Thanks,
Jamie
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wishbone
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Re: the end of an episode...
Reply #1 - Apr 27th, 2011 at 8:45pm
 
Hi Jamie, regardless of reason I pray you cycle is ending, however I have been in cycle (I am eposodic) for 3 months with horrible hits both as to kip and number but was PF for 5 days and I thought I was going out my cycle but got hit today.  Fortunately I was at home and hit the O2 at 40lpm and was able to abort in just a few minutes.  I too was hopeful that my cycle was ending but now I am not sure.

As far as sleeping sitting up, I believe this can help but not absolute.  I cannot sleep on my left side (I am left sided) during cycle or I am for sure to get hit, however I have gotten hit sleeping sitting up depending how ramped I am in cycle.

Good luck in moving toward PF days.

Wishbone
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Just as I try daily to grow my Faith in God I try daily to learn how to cope with Cluster Headaches
 
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oltwitchy
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Re: the end of an episode...
Reply #2 - Apr 28th, 2011 at 12:25am
 
Wishbone- thank you for the prayers, every bit can help i truely believe.
Are there any signs that you are coming to the end of a cycle or is it just something that goes away one day? I think the most frustrating and frightening aspect of this condition is that since it is my first cycle, i'm not sure if i'm episodic or chronic.
I'm scheduled to go back to work next wednesday, and i've been off with CH since the 1st of April. I know my work needs to know when i'll be back but i just don't have a time limit for them. But if the pain is lessening with each CH is this a sign that the cycle is coming to an end?
Any help will be appreciated!
Jamie
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MoxieGirl
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Re: the end of an episode...
Reply #3 - Apr 28th, 2011 at 4:30am
 
My clusters are a bit different from what most of you suffer with, so probably aren't quite the same. They certainly aren't as long (5-15 minutes usually), and only about 10% happen when I'm sleeping. I used to get 30-45 minute, hour long, ones, when they first started 4 years ago.

When I was episodic early last year and beyond, my cycle would start mild, with a few little clusters, little more than intense ice picks - REALLY intense ice picks. And build over a week or two. It would end with the Big Bang of clusters. Always a 9 or 10 on my pain scale. When I reached one of those, I knew that episode was pretty much over and I was good to go for a week, maybe 2 weeks if I was lucky. Sometimes I'd have 2 big bangs, but they'd always signal the end.

But then I went chronic, and now all bets are off. Anytime, any day, always on guard.

Renée
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wimsey1
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Re: the end of an episode...
Reply #4 - Apr 28th, 2011 at 8:21am
 
My experience has been the same as Renee's. When I was episodic, I knew I was at the end of a cycle because...well, they just were gone. It's like there is a constant tightness in and around my eye (pretty much always now I am chronic) that went away and I knew I was done for now. My hits were always pretty high and almost always 45 minutes long, so I didn't experience a tapering or a building up. They just stopped. Oh, for the good old days! Blessings. lance
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wishbone
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Re: the end of an episode...
Reply #5 - Apr 28th, 2011 at 11:33am
 
Jamie so far as I know I remain episodic, but one never knows with the beast.  My pattern generally runs the same as Renee and Wimsey described when they were episodic, cycle begins slow and then during last few weeks I get hammered like you would not believe and then the hits just stop, you no longer have the tightness over your head and you just feel differently.  I never really had a cycle where the end was easy or tapered very much, it is like the Demon is going to beat the crap out of you long and hard and then leave for a while.

I honestly forgot if you said you were on o2, but if so please remember to get on it AS SOON AS YOU FEEL THE HIT COMING, don't wait to see if it is going to be a bad one, the sooner you get on the quicker you can abort and it will prevent the kip from getting higher.

Good luck and hopefully you are episodic with PF periods lasting a long time.

Wishbone
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oltwitchy
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Re: the end of an episode...
Reply #6 - Apr 29th, 2011 at 1:38am
 
Well I was hoping I was at the end of a cycle but last night the beast and I danced for a few hours. The day has been PF, but as usual the night time is full of anxiety as I feel the edges of an attack just waiting for me to fall asleep. I was hopeful I was coming to an end but now feel as if there is no end.
Wishbone- I have tried O2 therapy but it doesn't seem to work for me. Last night I took an injection of imitrex but that just seemed to ramp up my attack. It was also my first time using it. I ended up having to use butorphanol nasal spray (a narcotic that i'm not fond of having to use) and was able to find some relief.
I'm also on 240 mg of verapamil and my Dr doesn't want to put me on more. Sometimes I use Migranal nasal spray when I'm having an attack which seems to have a 50-50 chance of working. Unfortunately I can not take the imitrex within 24 hours of the migranal, which means I fall back on the narcotic spray.
I also take Vitamin D and fish oil on the recommendation of other board members.
My attacks started out very strong and have been consistant up to a couple of days ago. I thought i was finally free but everyday I learn more about the beast and how the rules are always changing.
Bests,
Jamie
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wimsey1
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Re: the end of an episode...
Reply #7 - Apr 29th, 2011 at 7:55am
 
oltwitchy wrote on Apr 29th, 2011 at 1:38am:
I have tried O2 therapy but it doesn't seem to work for me. Last night I took an injection of imitrex but that just seemed to ramp up my attack. It was also my first time using it. I ended up having to use butorphanol nasal spray (a narcotic that i'm not fond of having to use) and was able to find some relief.
I'm also on 240 mg of verapamil and my Dr doesn't want to put me on more. Sometimes I use Migranal nasal spray when I'm having an attack which seems to have a 50-50 chance of working.


I'm familiar with the desperation you feel. I am curious about one or two things, though. First, is your dr a headache specialist, or is this your GP or a nonspecialized neuro? I ask because even the label use of verapamil allows for a higher dose. Is there a comorbid condition preventing you from going higher? Second, you have some of the better abortives in your arsenal (trex, migranal, O2) and yet they do not seem to be working. Sad. Are you certain you are using the O2 as best described? 25+l/m, 3 liter bag or demand flow valve, hyperventilating? I know for me this was a learning process and Batch was great in helping me through each step. Still, there are some for whom O2 does not seem to work. You may be one. Third, what about other preventatives? Lithium; verapamil+lithium; topamax; warfarin? And last, are you open to cluster busting? I encourage you to stay the course and resolve to find the best possible combination of meds and interventions that will be effective for you. Good luck with this and God bless. lance
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