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Topic: HELP!!! ADVICE NEEDED!! (Read 410 times) |
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Killroy 2.0
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HELP!!! ADVICE NEEDED!!
« on: Oct 3rd, 2007, 12:05pm » |
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OK here is the situation>
My son Chris has CH and we are in the thick of it.
Things we have done:
O2
Ice Pack
Red Bull
Decongestants
We are with out Insurance and have no more refills on zomig.
What else comes to mind for relief?
I think I know that there is nothing left for me to do, but damit when it is your own child...
I think I have gone dumb
Gena
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alienspacebabe
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Re: HELP!!! ADVICE NEEDED!!
« Reply #1 on: Oct 3rd, 2007, 12:15pm » |
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Dammit, Gena!!! You left your zomig at my place when I had my BBQ.... Silly woman - that's what you get for pulling it outta your purse to get to your ciggies!!
PM me your work addy (assuming you're there) - I have a strong desire to sneak out of work early and take the car for a drive..... Seriously - PM me the addy where you'll be this afternoon.
Lizzie
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Melissa
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Re: HELP!!! ADVICE NEEDED!!
« Reply #2 on: Oct 3rd, 2007, 12:18pm » |
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Depending on his age, Kudzu & Taurine for prevent, Clustermasx for the O2 if it isn't working for him with a regular non-rebreather.
Good luck! Sorry to hear about this...
*hugs*
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Killroy 2.0
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Re: HELP!!! ADVICE NEEDED!!
« Reply #3 on: Oct 3rd, 2007, 12:21pm » |
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on Oct 3rd, 2007, 12:15pm, alienspacebabe wrote:Dammit, Gena!!! You left your zomig at my place when I had my BBQ.... Silly woman - that's what you get for pulling it outta your purse to get to your ciggies!!
PM me your work addy (assuming you're there) - I have a strong desire to sneak out of work early and take the car for a drive..... Seriously - PM me the addy where you'll be this afternoon.
Lizzie |
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See I knew it!!! I told Tom I thought I had some left I just could not find it!!!
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Killroy 2.0
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Re: HELP!!! ADVICE NEEDED!!
« Reply #4 on: Oct 3rd, 2007, 12:23pm » |
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on Oct 3rd, 2007, 12:18pm, Sometimes wrote:Depending on his age, Kudzu & Taurine for prevent, Clustermasx for the O2 if it isn't working for him with a regular non-rebreather.
Good luck! Sorry to hear about this...
*hugs* |
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Hello sometimes I don't believe we have meet. Thanks for the advice.
I have not tried him on Kudzu but the Red bull had Taurine in it, and we have a clustermasx
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sandie99
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Re: HELP!!! ADVICE NEEDED!!
« Reply #5 on: Oct 3rd, 2007, 12:25pm » |
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Gena,
I'm so sorry to hear that Chris has ch as well... 
Does something warm help if cold doesn't?
Taurine tablets, caffeine tablets... came to my mind as well.
I've got little help from ginger ale, so if you have that, giving it a go probably would not hurt...
PF days to you all,
Sanna
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Ghost
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Re: HELP!!! ADVICE NEEDED!!
« Reply #6 on: Oct 3rd, 2007, 12:26pm » |
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Biggest NO NO in the book!
Ready?
about 2 hours prior to next hit if they are regular, this may take the edge off, it wont stop it but may be a tad bit of relief, 1 only 1 exedrine migrane, and as hit starts 1 and only 1 tylenol rapid release. remember it wont abort or even stop the hit but it (FOR ME ) takes the edge off. I am guessing its the cafiene in it but not sure.
If its not regular but close try to guestimate. Cant promise it will help and for some will cause shadows, and or rebounds. Like some here o2 and cafiene is my only relief, so I tried combinations of different things doc ok'd till I found right combo for me.
I know I will probably catch heck for telling you this but I felt a little relief may be better than none.
Mike
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Killroy 2.0
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Re: HELP!!! ADVICE NEEDED!!
« Reply #7 on: Oct 3rd, 2007, 12:29pm » |
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on Oct 3rd, 2007, 12:25pm, sandie99 wrote:
I'm so sorry to hear that Chris has ch as well...
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Chris has had them for a couple of years now. It seems to happen every time school starts up.
Change in sleep cycle I guess.
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Rosybabe
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Re: HELP!!! ADVICE NEEDED!!
« Reply #8 on: Oct 3rd, 2007, 12:59pm » |
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Gena how old is your son?, I am sorry to hear He has CH  .
You can also check with Jonny, you probably left something at his place too
Hugs
Rosy
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PollyPocket
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Re: HELP!!! ADVICE NEEDED!!
« Reply #9 on: Oct 3rd, 2007, 1:00pm » |
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Hi Gena.
I've used the excedrine migraine tabs with shadows and it has worked for me too. Never tried it for a full-on hit, but it definitely knocked the heavier shadows down.
Good luck and pf vibes to Chris!
Hugs,
Jen
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Tiannia
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Re: HELP!!! ADVICE NEEDED!!
« Reply #10 on: Oct 3rd, 2007, 3:33pm » |
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For me the excedrine migriane only works if I can catch it early enough and it is not a bad hit. Sometimes it can make the ones that are just f'ing annoying and not bad enough for trex tolerable. But I have to take it right when I first feel it creeping up the back of my neck. If I dont get it then, well... 
The kudzu helped me for a short term then did nto phase them at all.
I hope that something helps.
Tia
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nani
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Re: HELP!!! ADVICE NEEDED!!
« Reply #11 on: Oct 3rd, 2007, 4:35pm » |
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Kudzu is not a good choice for boys. It contains plant based phyto-estrogens, so one should be cautious about giving it to children and young men. Once all the testosterone is in place, it's fine.
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Killroy 2.0
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Re: HELP!!! ADVICE NEEDED!!
« Reply #12 on: Oct 3rd, 2007, 6:31pm » |
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Thank All of You for your help and support.
Lizzie gets an angel award !!!
She left work and drove all the way to Madison just to return stuff I left at her house.
You are a special person. Not only did you bring my stuff back but you sat and talked with me for at least 2+ hours something else to do besides worry.
And wouldn't you know Christopher had his first real break of the day!
Thank you just seams to not be enough!
Gena
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DennisM1045
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Re: HELP!!! ADVICE NEEDED!!
« Reply #13 on: Oct 3rd, 2007, 8:33pm » |
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Lizzy you Rock 
Gena, you are a great Mom and supporter. I'm glad to hear Christopher got some relief.
Wishing you both PFDAN.
-Dennis-
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Charlie
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Re: HELP!!! ADVICE NEEDED!!
« Reply #14 on: Oct 3rd, 2007, 8:34pm » |
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Rats.
All I can do is post my techinque again. It will work if you keep at it. Others have had some success. In any event you have nothing to lose.
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
Charlie
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Re: HELP!!! ADVICE NEEDED!!
« Reply #15 on: Oct 3rd, 2007, 8:38pm » |
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I've used the RC seed treatment, but I don't think you'd want to go that route with a young child.... (how old is he?)
Just wanted to send vibes his way AND yours. It really saddens me to think this happens to kids too. I could not imagine having to deal with one of my own kids having to go through this.
Hang in there! Both of you!!
Adam
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Re: HELP!!! ADVICE NEEDED!!
« Reply #16 on: Oct 3rd, 2007, 8:47pm » |
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Yes indeedy....Lizzie is an Angel, and everyone who's life she has touched knows it too. Good thing she found your meds and got them back to you. 
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alienspacebabe
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Re: HELP!!! ADVICE NEEDED!!
« Reply #17 on: Oct 3rd, 2007, 8:51pm » |
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Just glad I remember you left it here!
and always happy to help out friends..... besides, it's a beautiful drive (and an excuse to go almost 90)......
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ClusterChuck
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Re: HELP!!! ADVICE NEEDED!!
« Reply #18 on: Oct 3rd, 2007, 9:38pm » |
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Gena, dahlink, I am so sorry he has to deal with this too! DAYUM!
You said you have tried O2, but you implied that it has not been that successful.
Some people have been having better luck in aborting quicker, using O2 at a higher flow rate. There are usually regulators available on eBay that go up to 25 LPM. Try him on that. As a matter of fact, you and Thomas should try it yourselves, next time either of you get hit.
My love to you all ... Let us know how things are going.
Chuck
Edited to add: Make sure you check with his doctor to see if he/she sees any problem with him taking O2 at a higher flow rate.
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Sean_C
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Re: HELP!!! ADVICE NEEDED!!
« Reply #19 on: Oct 3rd, 2007, 11:39pm » |
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How old is this kid??
I saw the word "boy", do I stand corrected or not??
Sean.....................................
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Killroy 2.0
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Re: HELP!!! ADVICE NEEDED!!
« Reply #20 on: Oct 4th, 2007, 8:06am » |
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In less then a month Christopher will be 16, he started having CH right along with puberty  . As if that is not enough to deal with.
I had actually got them under control by the time Liz got here, but the meds came in handy this morning and he will go to school today yay!!!!
Thanks again for everybodys support!!! You guys are the best!
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Wayne
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Re: HELP!!! ADVICE NEEDED!!
« Reply #21 on: Oct 4th, 2007, 9:27am » |
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Hi Gena
My heart really goes out to you and Chris, I have no idea how I would handle it if my kids developed this horror. Its my worst nightmare that one of them will inherit CH and hate me forever.
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luveemom
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Re: HELP!!! ADVICE NEEDED!!
« Reply #22 on: Oct 4th, 2007, 10:11am » |
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Hi Gena,
Glad to hear you got some relief for your dear son.......Lizzie is a sweet soul, although I have not had the pleasure to meet her, she has had many kind words for me. I just wanted to suggest that someone on here, that I cannot remember....  ........suggested to me, and it does help.......water....and lots of it....I drink it with ice, but not sure if that makes a difference or not. Just thought I would pass it on for the future. Sending PF wishes for your son....
(((((((HUGS)))))))))
Alicia
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E-Double
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Re: HELP!!! ADVICE NEEDED!!
« Reply #23 on: Oct 4th, 2007, 11:54am » |
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check with doctor of course but since old enough to take triptans , you/he may consider olanzapine/zyprexa.
MUCH cheaper and quite effective
good luck and sorry he is hurting
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I can't believe that I have to bang my
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But the blows they have just a little more
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Gonna take a breath and try again.
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