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Topic: Scratch one more (Read 532 times) |
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Gator
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Scratch one more
« on: Dec 5th, 2007, 10:22am » |
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I have heard some people say that when their cycle was raging, the DHE nasal spray (migranal) would give them a break for (sometimes) up to a few days. It also kind of knocked them on their asses and let them get some sleep, which would be a really good thing right now.
I discussed this with my neuro during my last visit and we decided to try something different. He gave me several sample packages and the following instructions:
Take the first dose as per the package instructions, then, rather than following the directions for a full dose, spray once into each nostril (half a dose) twice a day.
The idea was to get it into my system and then keep it there for several days to see if that would give me a break. Well, it didn't work. Not only that, but because of or incidental to trying it, my nose and sinuses are plugged/running/driving me effing crazy. Not being able to breathe worth a shit sux royally, not to mention the wonderful side effect of increased hits and heavy shadows.
What can I say, we're grasping at straws here as none of the usual (and several non-standard) prevents have worked. Even the last round of pred only worked for a couple days before the hits started coming back. I'm lucky that oxygen works to abort, but damnit, I need a break. Short of a hospital visit for DHE infusion, which I cannot afford, this seemed like an idea, even if not a good one.
Why do I get my hopes up every time we come up with another treatment idea, when I know that everything I have tried has failed?
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Sean_C
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on Dec 5th, 2007, 10:22am, Gator wrote:Why do I get my hopes up every time we come up with another treatment idea, when I know that everything I have tried has failed?
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I've walked in your shoes Mike, many times  However, just because something hadn't worked in the past, doesn't necessarily mean it won't work this time.
My sinuses get all wacked out during cycles, it definately makes the hits worse because of the difficulty breathing. Thomas mentioned that over the counter Walgreens nasal spray that seemed to give him some relief, might be worth a try.
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1196106369;start=0#0
If there's anything I can do, you have my number.
Keep the faith bro,
Sean...........................
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| « Last Edit: Dec 5th, 2007, 10:45am by Sean_C » |
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thomas
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Re: Scratch one more
« Reply #2 on: Dec 5th, 2007, 10:40am » |
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I haven't used the nasal DHE, but the last two nights I've been given a shot of DHE right in the tush. I've had two nights worth of sleep now in the last 34 days. DHE has always given me a minimum of 12 pf hours. But the only ways I've used it are shots and IV, so I can't vouch for the nasal option. Is it possible for your doctor to instruct your wife on how to administer the shot? (It goes in yer butt, so you have to have someone else do it for ya).
See if you can use some 4-way to clean up your nasal area, it might also help with the head a bit. 
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| « Last Edit: Dec 5th, 2007, 10:51am by thomas » |
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Sean_C
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on Dec 5th, 2007, 10:38am, Sean_C wrote:| If there's anything I can do |
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on Dec 5th, 2007, 10:40am, thomas wrote:| (It goes in yer butt, so you have to have someone else do it for ya). |
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I draw the line here though  You'll have to suffer LOL
J/K pf wishes headed your way bro.
Cheers,
Sean...............................
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Guiseppi
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Re: Scratch one more
« Reply #4 on: Dec 5th, 2007, 11:19am » |
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Damn Gator, sorry you're getting so beat up, hang in there. 
Guiseppi
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LeeS
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Re: Scratch one more
« Reply #5 on: Dec 5th, 2007, 11:48am » |
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Sorry to hear it Mike - this has been going on too long 
Keep battling - have you tried taurine as a supplement (sorry - can't remember)?
-Lee
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Ray
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Re: Scratch one more
« Reply #6 on: Dec 5th, 2007, 1:02pm » |
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I've used the DHE nasal spray. It does clog up your nose. I used it only on one side, one spray, then waited 15 minutes and another. (same drug vial)
It gave me some PF time afterwards, maybe a day.
Good luck Mike, sorry you're having a rough time.
Remember no Imitrex for 24 hours after the DHE.
Ray
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
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black
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sorry mike.i really cant think anything to say except wishing u have a pf time soon.stay strong and positive as possible.
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Sandy_C
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Re: Scratch one more
« Reply #8 on: Dec 5th, 2007, 3:42pm » |
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Aw Mike, I'm so sorry you are having such a hard time. Sending you hugs, babe.
If I can help you in any way, please let me know. You've given me so much advice and support over the years, it's my turn.
Sandy
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Lean on me when you're not strong
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For it won't be long
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Grandma_Sweet_Boy
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Re: Scratch one more
« Reply #9 on: Dec 5th, 2007, 3:45pm » |
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Mike - I'm so sorry to hear that you continue this brutal fight without a break.
Sending you all the PF wishes I can drum up.
Carol
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lionsound
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Re: Scratch one more
« Reply #10 on: Dec 5th, 2007, 4:04pm » |
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Annette
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Re: Scratch one more
« Reply #11 on: Dec 5th, 2007, 4:08pm » |
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Sorry Mike to hear you are getting hit hard and that the DHE spray didnt work ! I understand how hard it is to get ones hope up only for it to be dashed. I believe that has happened to just about every CHer.
Sending hugs and prayers for painfree days and nights.
Hang tough Mike, this too will pass.
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Charlotte
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Re: Scratch one more
« Reply #12 on: Dec 5th, 2007, 4:13pm » |
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Sorry, Gator.
Charlotte
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Gator
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Re: Scratch one more
« Reply #13 on: Dec 5th, 2007, 7:28pm » |
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Thanks y'all. I really only started out to report a new twist on an old treatment in case it might help someone. I guess I got caught up in my own little pity party. Sorry. The fact that this didn't work for me shouldn't deter anyone else from trying if their doctor prescribes it - nothing else has worked for me, either. I'm one of those nasty little statistics that blows out the bell curve - a late onset, intractable, primary chronic.  My neuro loves me, though. He uses me as a crash test dummy for his neurology residents at least once a year for the past couple years. They get to ask questions and learn about CH and I get to promote clusters, OUCH and ch.com to a new crop of neurologists every year.
Thanks for the love and support that only this family can give. I am standing strong once again.
Onward and upward!
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Kevin_M
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Re: Scratch one more
« Reply #14 on: Dec 5th, 2007, 8:02pm » |
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on Dec 5th, 2007, 7:28pm, Gator wrote:| Thanks for the love and support that only this family can give. I am standing strong once again. |
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Despite the news of no break for you Michael, it's good to hear.  Reminds me all of that poem you wrote, about the armor getting heavy at times from battling.
Here for you too, bud.
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| « Last Edit: Dec 5th, 2007, 8:03pm by Kevin_M » |
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E-Double
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Re: Scratch one more
« Reply #15 on: Dec 5th, 2007, 8:35pm » |
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u need to find a way to get your ass in the hospital.
I gotta tell ya that was the best thing i ever did.
It pretty much lasted up until now from july not 100 % pf but damn near close to it.
getting an increase as of late but nothing can't handle.
good luck brother and if in need of anything holla pm styles
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nani
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Re: Scratch one more
« Reply #16 on: Dec 5th, 2007, 11:32pm » |
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Sorry, Mike.
If you haven't... maybe you could give the taurine supplements, and the 4-Way a try? 4-Way worked for me today.
Sending lots of pf wishes and prayers...
love to you and Jane, nani 
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| « Last Edit: Dec 5th, 2007, 11:33pm by nani » |
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kcopelin
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Re: Scratch one more
« Reply #17 on: Dec 6th, 2007, 11:01pm » |
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Aw Mike, I'm so sorry you're gettin' slammed. You've been such a great help for so many-if there's anything I can do-just PM me.
Praying for a break for you brother.
PFDAN y'all,
kathy
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Jill
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Re: Scratch one more
« Reply #18 on: Dec 7th, 2007, 8:13am » |
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Hey Gator,
I am sorry that you are having such a rough time. And that the nasal spray did not work like you wanted it to.
Nasals sprays are my worst enemy, so my doctor decided to set me up with the DHE injections. There have been a couple of times when he gives me instructions on using the injections routinely for a day or so instead of just as an abortive.
This might be an idea since you can't do the in hospital route.
Just a thought.
Jill
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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thomas
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Re: Scratch one more
« Reply #19 on: Dec 7th, 2007, 8:48am » |
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on Dec 5th, 2007, 11:32pm, nani wrote:
4-Way worked for me today.
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Really glad to hear that. Maybe more folks will believe now.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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thomas
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Re: Scratch one more
« Reply #20 on: Dec 7th, 2007, 8:50am » |
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on Dec 7th, 2007, 8:13am, Jill wrote:There have been a couple of times when he gives me instructions on using the injections routinely for a day or so instead of just as an abortive.
This might be an idea since you can't do the in hospital route.
Just a thought.
Jill |
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That's the way we use it, it's not really that good as an abortive for me, but it's great for a nice 8-24 hour break so you can rest up. I did two shots Monday and Tuesday night this week, now I'm only getting hit 2-3 times a day, and they are very mild. Are the shots an option for you, Mike?
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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sandie99
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Re: Scratch one more
« Reply #21 on: Dec 10th, 2007, 6:04am » |
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Mike, I'm sorry that the experiment didn't turned out as you hoped. That's the down side with ch treatments; it's so hard to find that one treatment which works wonders. I do hope that it will appear for you.
PF wishes,
Sanna
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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)
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danielpeterson
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Re: Scratch one more
« Reply #22 on: Dec 11th, 2007, 10:51am » |
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MIKE! --this may sound goofy but it works for me, and I AM not really a novice to the CH scene. IN FACT in my scaredy-cat days I ran to ER twice.... I know that I am a "rightie" and that an MD called me a CR.
AND I know that the MD John Sarno is on to something when he says that when the pain starts, talk to your head, yes, TALK to your head. Tell it that you know this is a harmless oxygen deprivation, an attempt to distract you from underlying emotional issues that are even more painful to you. "Your cover is blown," you say. He gets rather mean to the little guy (for we are just parts of a whole, you know) so I do it in a more spiritual way.
And he has ten other steps (in the book The Divided Mind), like not allowing the little guy's pain to dissuade you from doing physical activity or the things you love to do.
I think this is in line with your motto, "Eating poison is like holding onto resentment and anger, and waiting for the other person to have a hissy fit," or some such.
LOVE
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vietvet2tours
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Re: Scratch one more
« Reply #23 on: Dec 11th, 2007, 10:58am » |
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on Dec 11th, 2007, 10:51am, danielpeterson wrote:MIKE! --this may sound goofy but it works for me, and I AM not really a novice to the CH scene. IN FACT in my scaredy-cat days I ran to ER twice.... I know that I am a "rightie" and that an MD called me a CR.
AND I know that the MD John Sarno is on to something when he says that when the pain starts, talk to your head, yes, TALK to your head. Tell it that you know this is a harmless oxygen deprivation, an attempt to distract you from underlying emotional issues that are even more painful to you. "Your cover is blown," you say. He gets rather mean to the little guy (for we are just parts of a whole, you know) so I do it in a more spiritual way.
And he has ten other steps (in the book The Divided Mind), like not allowing the little guy's pain to dissuade you from doing physical activity or the things you love to do.
I think this is in line with your motto, "Eating poison is like holding onto resentment and anger, and waiting for the other person to have a hissy fit," or some such.
LOVE |
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Troll.
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Kill em all let God sort em out
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danielpeterson
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Re: Scratch one more
« Reply #24 on: Dec 11th, 2007, 11:05am » |
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WHAT in the world is a troll... is there an "enemy image" lurking around here somewhere?
MOTTO: it may be a Beast, but it is the best beast we have.
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