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   Author  Topic: What's the Deal  (Read 656 times)
tracyboo
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    kanadianwannabe7
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What's the Deal
« on: Oct 17th, 2006, 10:29pm »
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Ok, here's the deal for those that don't know. Hubby had lots of episodes, all times of the day and nite. Finally, with the help of Kudzu (maybe), the daytime ones are under control. He also drinks the red-bull. But, EVERY single nite, like clockwork he get one. He takes Kudzu 3 pills 3x per day and 6mg of melatonin.  
 
So, any suggestions as to why this happens? We are working on trying to get oxygen and some other "alternative" methods...
 
Thanks
 
Tracy
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Sean_C
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Re: What's the Deal
« Reply #1 on: Oct 17th, 2006, 10:31pm »
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on Oct 17th, 2006, 10:29pm, tracyboo wrote:
So, any suggestions as to why this happens?

 
I wish I knew myself Grin
 
Sean..............................
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tracyboo
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    kanadianwannabe7
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Re: What's the Deal
« Reply #2 on: Oct 17th, 2006, 10:36pm »
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gee thanks...big help you arethumb ...lol...just joking...
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Sean_C
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Re: What's the Deal
« Reply #3 on: Oct 17th, 2006, 10:41pm »
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It just happens that way Tracy Wink read up on some of the threads and ask some more questions if ya have any Grin
 
I wish I could of answered your question but that was all I could think of at the moment Grin
 
Cheers
 
Sean................................
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nani
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Re: What's the Deal
« Reply #4 on: Oct 17th, 2006, 11:26pm »
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It's the nature of the beast, I guess.  Undecided
Kudzu won't stop a cycle, it can make things more bearable, though. Has he considered adding a Benadryl to the melatonin? That helps some folks a lot.  
Keep us posted, Tracy.
hugs and pf wishes to your home, nani
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Re: What's the Deal
« Reply #5 on: Oct 17th, 2006, 11:47pm »
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He may want to consider upping the melatonin to 9 to 12 mg.  It's unlikely to do any harm at all, and it may make a lot of difference.  Be sure to take it 1/2 hr. before going to bed--it won't do any good if taken during the day.
 
With luck, this may help with the nighttime hits.  I take 9 mg in cycle, and 3 mg. nightly when out of cycle.  I've done this for quite some time, and have not noticed any ill effects.
 
Best wishes,
 
George
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Re: What's the Deal
« Reply #6 on: Oct 18th, 2006, 9:41am »
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don't just "work on trying", GET THE OXYGEN. if the kudzu has taken care of a good bit of the cycle, the oxygen has a very good chance of knocking the breakthroughs out in less than 10 minutes. it's about having a multi-faceted approach to the problem. when kudzu worked for me it took care of 60% of the hits i would usually get. the O2 then took out the rest before all hell would break loose, and as a last resort, the imitrex for those social situations or work situations that just wouldn't wait.
 
good luck.  
 
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Re: What's the Deal
« Reply #7 on: Oct 18th, 2006, 10:01am »
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The beginning of a cluster cycle for me usually means hits all over the place.  I scramble from treatment to treatment, trying new things, looking for something that works.  Once I finally settle back into my normal cafergot & O2 routine the attacks settle into a normal clockwork schedule.
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Re: What's the Deal
« Reply #8 on: Oct 18th, 2006, 10:12am »
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It could be that sleep triggers the CH in many.  Most episodics get hit much more at night than during the day.  
Like Nani said, its just the nature of the beast......and I would DEFINATELY add the benadryl to the melatonin.
 
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Re: What's the Deal
« Reply #9 on: Oct 18th, 2006, 1:41pm »
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Thanks for all the responses. We did add benadryl the last few nites and all it seems to do is make him very tired. I will certainly try increasing the melatonin.
 
Currently, we have no insurance and I'm trying to find a welding supply place to get one. Not having much luck. I'm also trying to get his doc to write a prescription for it without them having to see him. So, that's what I mean by working on it.
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Re: What's the Deal
« Reply #10 on: Oct 18th, 2006, 1:58pm »
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hey tracy, didn't mean to sound rude about the "working on trying" comment. Just wanted to emphasize that, from a time management standpoint, any minute (or money) applied to getting O2 is likely to have a far greater upside effect for your husband than time spent looking for any other answer. sounds as though you're having success. don't take no for an answer. take no prisoners on the O2 front.
 
scott
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Re: What's the Deal
« Reply #11 on: Oct 18th, 2006, 2:08pm »
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Wink...No offense taken. I know how passionate we all are about this...lol
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Re: What's the Deal
« Reply #12 on: Oct 18th, 2006, 6:04pm »
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During a cycle I get the 2am wake up and dance hit every night!
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Re: What's the Deal
« Reply #13 on: Oct 18th, 2006, 7:18pm »
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Try sleeping with lots of extra pillows, or even sitting up in a comfortable chair.  If attack is say, an hour and a half after falling asleep, consider setting alarm clock for an hour and a quarter and sleep in shorter shifts.
 
I doubt the toads work but live in hope.
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Re: What's the Deal
« Reply #14 on: Oct 18th, 2006, 7:53pm »
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on Oct 18th, 2006, 10:12am, BMoneeTheMoneeMan wrote:
It could be that sleep triggers the CH in many.  Most episodics get hit much more at night than during the day.  
Like Nani said, its just the nature of the beast......and I would DEFINATELY add the benadryl to the melatonin.
 
B$

 
Interesting point B.
Along with CH I’ve got exploding head & restless limb syndrome all three the result of a buggered Hypothy thingy ( can't spell it wont even try ).
Although I get the CH hits any time the EH & RLS only occurs after I have retired for the night & mostly after I go to sleep, interestingly I haven’t had a night time hit with CH since going chronic.
 
Here’s some info copied from one of the links to the left.
Periodicity and Duration of the Attacks
Attacks last from 30 minutes to 2 hours (mean of 45 minutes) in about 75 percent of cases.  Occasionally, attacks - especially mild ones - may be as short as 10 minutes, whereas others may last as long as several hours.  Attacks range in frequency from six per 24 hours to one per week, with a mean of one to two per day.  Periodicity is a characteristic feature in about 85 percent of patients:  attacks of pain tend to recur at the same hour each day for the duration of the cluster bout; many individuals also experience additional attacks that occur randomly throughout the day.   About 75 percent of attacks occur between 9 p.m. and 10 a.m. (Russell, 1981).   Manzoni et al, (1983b) found sharp peaks for attack frequency between 1 and 2 a.m., 1 and 3 p.m., and at 9 p.m (Fig. 6-4).  Patients are awakened from sleep by pain paroxysms in about 50 percent of cases, usually within 2 hours of falling asleep (Lance and Anthony, 1971; Hornabrook, 1964).  Nocturnal attacks are associated with rapid eye movement (REM) sleep about one-half the time in episodic cluster headache, but only rarely in the chronic form (Plaffenrath et al, 1986; Kayed and Sjaastad, 1985).
 
Regards
Barry
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Re: What's the Deal
« Reply #15 on: Oct 22nd, 2006, 6:35am »
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Hi Kiddo,
     Sounds like you are as new to 02 as I am.  One lesson that I have learned is not to get too small of a bottle.  When I started I was uneducated and just bought a small bottle (size E, or 21cf).  It didn't take long
to realize that I should have gotten a larger bottle.  When I get the money I am going to set up a rental of an S bottle which is 120cf.
     I can't remember where I saw it but I did see a chart that showed, and I learned the hard way, when using 02 @ a rate of 10lpm - 12 lpm the bottle I have only lasts 44 min.  More than once I have used up half of a bottle for one hit.
     Good luck and here's hope for a pf day.
 
Bill
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Re: What's the Deal
« Reply #16 on: Oct 23rd, 2006, 11:53pm »
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Quote:
don't just "work on trying", GET THE OXYGEN.

 
i agree get the o2.
 
Turts
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