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Topic: I'm New (Read 378 times) |
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fat___pam
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You aren't paranoid if everyone is after you....
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Hi everyone! Thanks for having a great mesage board. Sorry it has to exist yet happy that I found it. My boyfriend has had custers for about 20+ years. He is 39 now and we have been living together for about a year and a half. I always knew that he had "headaches" and he has had them pretty steadily since he has lived here but not horribly until the past few weeks. They have been steadily getting worse. He has been diagnosed with clusters and has tried many of the reccomended drugs and Oxygen as well without sucess. He hasn't tried Imitrex and thats the first thing I will be asking the Neuro for when we have his first appointment next month. He started taking kudzu on Saturday as well, which seems to have actually helped some. He pretty much has things under control as far as dealing with them goes but of course I am a wreck because I feel so bad for him. I will probably be writing on here much more than he is because its what I do when he has a headache and he needs to lay down. We are in up state NY and will be going to a Neuro in Rochester or Syracuse. We actually have 2 appointments!! This is after trying to get one for the past month and having no luck.
Thanks a lot!
C
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cazman
New Board Veteran
if ya dont like it take a walk
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Re: I'm New
« Reply #1 on: Jun 27th, 2005, 1:43pm » |
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o2 did not help is he useing the right mask it must be a nonrebreather mask any other mask wont work , theres been alot of success with alternatives, lsa , kudzu , read all the threads and posts theres a wealth of info here to look at .
good luck and welcome ps there also a supporters corner for you here.
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fat___pam
New Board Newbie
You aren't paranoid if everyone is after you....
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Re: I'm New
« Reply #2 on: Jun 27th, 2005, 2:33pm » |
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I once again asked him about having the right mask again just last night. He said he did have the non breather one. We have talked about the possibility of "other" types of medicines and we will definately pursue that if it gets much worse. He has been lucky this cycle, its been bearable so far. Was MUCH worse in the past. He does sometime get some relief by smoking.. has anyone else noticed this? He was never a smoker till ch got so bad. At the begining of the cycle the smoking seems to abort the HA. Now.. in NO WAY am I endorsing this I presonally find the possibility of cancer horrifying. Also, large amounts of caffiene help him sometimes. I noticed on the med survey about people quitting smoking but not one about people starting. Once again.. it works for him (sometimes) and I am just curious about if anyone else has noticed any correlation.
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thomas
CH.com Alumnus
New Board Hall of Famer
"Hit like a phillips head into my brain."
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Re: I'm New
« Reply #3 on: Jun 27th, 2005, 2:45pm » |
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What flow rate (lpm) was he using with the O2?
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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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fat___pam
New Board Newbie
You aren't paranoid if everyone is after you....
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Re: I'm New
« Reply #4 on: Jun 27th, 2005, 2:56pm » |
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Good lord.. I just called him at work.. 15 l per hour? BUT.. a dr originally told him to try it and then him and some of his "rescue" friends tried different amounts. He was in Quwait at the time, USAF. Maybe I should urge him to try again doesn't sound too solid now that I get the details. He also thinks its inconvient.. I promptly pointed out who cares, it is better than total shut down and he works in a darn hospital!
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thomas
CH.com Alumnus
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Re: I'm New
« Reply #5 on: Jun 27th, 2005, 3:22pm » |
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15 liters per minute, is what I use, and it works about 80% of the time.
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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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fat___pam
New Board Newbie
You aren't paranoid if everyone is after you....
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Re: I'm New
« Reply #6 on: Jun 27th, 2005, 3:33pm » |
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Are you able to bring it with you where ever you go?
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thomas
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Re: I'm New
« Reply #7 on: Jun 27th, 2005, 3:35pm » |
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on Jun 27th, 2005, 3:33pm, fat___pam wrote:| Are you able to bring it with you where ever you go? |
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Yes, I carry an M-60 tank which is a lot bigger than the portable E-tanks, but then again, I'm much bigger than the average O2 user. lol. As far as being inconvenient, which is more inconvenient, thrashing about for an hour in agony or sucking on O2 for 10-15 minutes? 
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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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fat___pam
New Board Newbie
You aren't paranoid if everyone is after you....
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Re: I'm New
« Reply #8 on: Jun 27th, 2005, 3:48pm » |
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I agree.. its better to take the o2.. my boyfriend is stubborn and a little bit of a pain in my butt.. like I said he works in a hospital which has 02 lines coming out of the walls... Have you tried verpamil? Im going to look it up now, he hasn't been on that yet. He basically gave up looking for anything for about the past 5 years or so. They were so bad and nothing worked. Then he found me, and I can't stand seeing him go through it so I am willing to have him try anything. He has been on sansert, cafergot, prednisone, merden, lithocaine, and ergostat. Forgive my spelling on those. Even some relpax for migraines, our dr didn't quite get it, but hey, I have migraines and the relpax didn't work for me either.
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Racer1_NC
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Re: I'm New
« Reply #9 on: Jun 27th, 2005, 4:04pm » |
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Quote:| I'm much bigger than the average O2 user. |
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You are just average size to me...... 
Quote:
Most here have tried the verap. It works for me and many more. Others haven't had much success with it.
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"Everybody's Gotta Learn Sometime."
Eventus stultorum magister.
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thomas
CH.com Alumnus
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"Hit like a phillips head into my brain."
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Re: I'm New
« Reply #10 on: Jun 27th, 2005, 4:04pm » |
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The only thing you listed that did work for me, was the sansert. The verapamil/prednisone taper was a complete waste of time for me. This is what I do nowadays
Quote:My CH treatment
20min HOT steamy shower 1 hour before bed
3-6 mg of melatonin and 2-6 mg of time-release melatonin afterwards
Go to bed
Wake up in the morning; take 250 mg of magnesium and 20 mg of fluoxetine (prozac)
Abort with zomig and O2 at 15 LPM as needed.
Also had some good results from alternative methods, but nothing too concrete to rave about yet. |
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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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fat___pam
New Board Newbie
You aren't paranoid if everyone is after you....
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Posts: 31
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Re: I'm New
« Reply #11 on: Jun 27th, 2005, 4:05pm » |
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I was SOOO not going to ask how big he was...
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fat___pam
New Board Newbie
You aren't paranoid if everyone is after you....
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Re: I'm New
« Reply #12 on: Jun 27th, 2005, 4:07pm » |
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Oh, I think he did try some melatonin as well.. the prednisone made him gain weight and he already told me no more steriods.. is verapamil technically a steriod?
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Racer1_NC
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Re: I'm New
« Reply #13 on: Jun 27th, 2005, 4:09pm » |
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on Jun 27th, 2005, 4:07pm, fat___pam wrote:| Oh, I think he did try some melatonin as well.. the prednisone made him gain weight and he already told me no more steriods.. is verapamil technically a steriod? |
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Nope.....Verap is a blood pressure med.
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"Everybody's Gotta Learn Sometime."
Eventus stultorum magister.
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thomas
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"Hit like a phillips head into my brain."
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Re: I'm New
« Reply #14 on: Jun 27th, 2005, 4:10pm » |
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on Jun 27th, 2005, 4:05pm, fat___pam wrote:| I was SOOO not going to ask how big he was... |
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HUGE! LMAO!
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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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fat___pam
New Board Newbie
You aren't paranoid if everyone is after you....
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Re: I'm New
« Reply #15 on: Jun 27th, 2005, 4:13pm » |
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You look tall but by no means HUGE....
I can't wait till someday I can learn how to pull out and highlight text like that.
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Margi
CH.com Alumnus
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Re: I'm New
« Reply #16 on: Jun 27th, 2005, 4:54pm » |
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lithocaine? do you mean lithium? or lidocaine? both are used for cluster.
As to your smoking question, we've done polls here. It's about half and half, smokers to non-smokers. Our conclusion? It really doesn't make a difference to stop, start or burst into flames when it comes to curing cluster. To me, the smell of cigarette smoke means that my hubby is finally finishing an attack. he can't smoke during an attack, mind you - but I always know when I smell smoke, he's done (wait, that doesn't sound right, does it? LOL). You know what I mean!
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| « Last Edit: Jun 27th, 2005, 4:55pm by Margi » |
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Kiwiinoz58
New Board Junior
Couldn't ya just SCREAM
   
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Re: I'm New
« Reply #18 on: Jun 27th, 2005, 5:43pm » |
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Hi Pam,
I reckon Verapamil is worth a try. They start it on low doses so it takes a while to get up to the amount that might help. I started on 40mg and finally got 2 months relief after reaching 480mg but am now on 940mgs. It's taking a while for the extra strength to kick in but when I'm bad I have a half dose of Imigran(Imitrex).
Good luck to your mate,
Cheers,
Jacqs(Kiwi)
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We are here for a good time not a long time. Time then to think outside the square and to give and get the best possibles of love and life.
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fat___pam
New Board Newbie
You aren't paranoid if everyone is after you....
Gender:
Posts: 31
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Re: I'm New
« Reply #19 on: Jun 27th, 2005, 8:21pm » |
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lithocaine? do you mean lithium? or lidocaine? both are used for cluster.
Lidocaine... and I might have figured out the quote thing...
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fat___pam
New Board Newbie
You aren't paranoid if everyone is after you....
Gender:
Posts: 31
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Re: I'm New
« Reply #20 on: Jun 27th, 2005, 8:25pm » |
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on Jun 27th, 2005, 8:21pm, fat___pam wrote:
Lidocaine... and I might have figured out the quote thing... |
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Ok, im trying the quotes again.. and thank you all for your good advice, and it was 15 litre per min....
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Sean_C
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on Jun 27th, 2005, 3:35pm, thomas wrote:| I'm much bigger than average. |
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LMAO thats not what I heard
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thomas
CH.com Alumnus
New Board Hall of Famer
"Hit like a phillips head into my brain."
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Re: I'm New
« Reply #22 on: Jun 28th, 2005, 12:10pm » |
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on Jun 27th, 2005, 9:12pm, Sean_C wrote:
LMAO thats not what I heard
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Oh, what am I going to do with you, bro?
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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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Gator
CH.com Alumnus
New Board Hall of Famer
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Re: I'm New
« Reply #23 on: Jun 28th, 2005, 2:04pm » |
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Well, apparently not much, T. LMAO
Welcome to the madhouse, Pam.
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