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Help! (Read 5488 times)

TheVerbalArchitect

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Help!
Jan 12^th, 2011 at 5:36pm

My doc keeps upping my intake of varapamil, im at 720 mgs a day wich from what ive heard is very bad, i also do the summatriptan injections,4 mgs,doing about 3 injections a day.I called and questioned the nurse today, i told her i didnt feel comfortable taking that much verapamil,and also from what ive heard it does not take months for verapamil to start working. I told her i wanted to try something else and she got mad at me saying i wasnt giving the verapimil a big enough try, bs i have been using it for a month and a half now and the clusters have been worse than ever,4-5 a day,maybe some of them are just rebounds,im not sure.

I dont know what to do ,should i keep following their template or should i put my foot down and say im done with the V?

Help Help Help

Aaron

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Jeannie

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Re: Help!
Reply #1 - Jan 12^th, 2011 at 5:47pm

Sorry you're having a rough time. We all have been there at one time or another and understand your frustration.

I have heard of some folks being on as much as 900mg Verap. Others use a combo of Verap and Lithium with great success. Do you have 02? I really do believe that the more Trex I use, the more often I get hit.

You also may want to check out Clusterbusters.com. Lots of useful info there.

Hang in there.

Jeannie

"It's all a grand illusion when you think you're in control." ~ Kenny Chesney

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TheVerbalArchitect CH.com Junior Offline I Love CH.com! Posts: 34 Madison, WI Gender:	Re: Help! Reply #2 - Jan 12^th, 2011 at 5:50pm I have been asking the nurse over the phone if i can try o2 they wont let me ,they want me to follow their plan,why im so frustrated. I have been wanting to try it though. And another thing i dont get any remmision, so me being on V all the time,will that hurt me?
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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Help! Reply #3 - Jan 12^th, 2011 at 5:59pm There are ways to get o2 without a script. Someone will be along to help you with that, I'm sure. As for long term use of Verap.... I have been on it for more than a year. I'll take it as long as it continues to work for me. ETA: I have thrown in an alternative method as well and have been pretty well controlled ever since.
Back to top	« Last Edit: Jan 12^th, 2011 at 6:11pm by Jeannie » "It's all a grand illusion when you think you're in control." ~ Kenny Chesney IP Logged

TheVerbalArchitect CH.com Junior Offline I Love CH.com! Posts: 34 Madison, WI Gender:	Re: Help! Reply #4 - Jan 12^th, 2011 at 6:40pm Your alternative method?
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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Help! Reply #5 - Jan 12^th, 2011 at 6:54pm Check out Clusterbusters.com. Everything you need to know is there.
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Callico

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Re: Help!
Reply #6 - Jan 12^th, 2011 at 7:05pm

I'm not concerned about the amount of Verap you are on. Have been on higher dosages for a couple of years. I am however concerned about your use of Trex. That much can be problematic, not to mention expensive, and can cause rebounds. If they won't give you O2 you need a new Dr. They obviously aren't up to speed on CH.

Jeannie gave you excellent advice. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

; It has worked VERY well for many of us.

Jerry

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Help! Reply #7 - Jan 12^th, 2011 at 7:23pm That dosage of verapamil is not unheard of. As to your doc's withholding of O2, four words: Fire your f*cking doctor.
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bejeeber

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Re: Help!
Reply #8 - Jan 12^th, 2011 at 7:35pm

You might be able to abort hits with half doses of your sumtriptan injections a la the imitrex tip here: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Personally I like to use the non toxic O2 as a first line abortive, imitrex injections just as a back up.

If you're in the US you could potentially get O2 without a prescrpition at a welding supply place. Medical supply places usually don't have the right regulator or mask anyway, so you might wanna see if you could hop on ordering those right away. That would be a high flow regulator (as discussed in the oxygen info link to the left), and a non rebreather mask such as the optimask which is the popular choice around here.

« Last Edit: Jan 12^th, 2011 at 9:21pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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jon019

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Re: Help!
Reply #9 - Jan 12^th, 2011 at 7:55pm

Brew wrote on Jan 12^th, 2011 at 7:23pm:

That dosage of verapamil is not unheard of.

I take 960-1040 mg/dy in divided doses...immediate release (NOT extended release..it don't work) and has been a sanity saver for me. For break through hits it's oxygen...MANY use oxygen only...I don't have the guts....but if I was you, I would get O2 "by any means necessary".

As to your doc's withholding of O2, four words:

Fire your f*cking doctor.

BING, BING, BING...we have a "winner, winner, chicken dinner"!!!!

Best,

Jon

The LARGE print giveth....and the small print taketh away. Tom Waits

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seaworthy CH.com Hall of Famer Offline Posts: 706	Re: Help! Reply #10 - Jan 12^th, 2011 at 8:12pm Quote: also from what ive heard it does not take months for verapamil to start working. 10-14 days Quote: im at 720 mgs a day How long have you been at that dosage?
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TheVerbalArchitect

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Re: Help!
Reply #11 - Jan 12^th, 2011 at 10:35pm

2 days at that dosage ,im just concerned for my heart,and i have been having rebounds like you wouldnt believe. just miserable everyday. I wouldnt say they are withholding o2 they want me to take all this verap first but everyone keeps telling me o2,. i have heard if it dont work at 460 it prob wont work at all specially because im chronic not episodal .still not sure what to do.

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Help! Reply #12 - Jan 12^th, 2011 at 10:42pm Quote: I wouldnt say they are withholding o2... I would. This guy doesn't understand the difference between a preventative and an abortive. Fire his ass.
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jon019

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Re: Help!
Reply #13 - Jan 12^th, 2011 at 11:11pm

TheVerbalArchitect wrote on Jan 12^th, 2011 at 10:35pm:

2 days at that dosage ,im just concerned for my heart,and i have been having rebounds like you wouldnt believe. just miserable everyday.

You should be concerned with high doses of ANY med...as with this one...regular (6 mo intervals or when dose is increased exponentially)...ecg's are mandatory...if your doc don't...dump him/her. Many of us have experienced success with this med....USUALLY after a cycle breaker to start (like prednisone or methylprednisolone). Please don't give up too soon....

I wouldnt say they are withholding o2 they want me to take all this verap first but everyone keeps telling me o2,.

Yup...they ARE withholding if they aint giving...there's a reason "everyone" says O2...it fricken' WORKS...minimal side effects...cheaper than almost anything but air...easy peasy............

i have heard if it dont work at 460 it prob wont work at all specially because im chronic not episodal .still not sure what to do.

480 is my maintenance dose...960+ is the "bomb"...don't know where you heard "if then" from...but it might be wrong...I think it is....

Best,

Jon

The LARGE print giveth....and the small print taketh away. Tom Waits

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wimsey1

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Re: Help!
Reply #14 - Jan 13^th, 2011 at 7:58am

As you've been told, two days aren't enough. And chronic vs. episdodic here isn't an issue. Episodics can lower or drop their verapamil doses when the cycle ends, chronics don't. I've been on verapamil for many years, and am currently at 400mgs/day. The clusters are managed with energy drinks and O2. I'd move heaven and earth to get O2 if I were you. Blessings. lance

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TheVerbalArchitect CH.com Junior Offline I Love CH.com! Posts: 34 Madison, WI Gender:	Re: Help! Reply #15 - Jan 14^th, 2011 at 12:58pm Wow guys,thanks so much for the input it helps more than you think and I will keep you updated One Love The V.A.
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Agostino Leyre CH.com Sponsor Offline "Hit like a phillips head into my brain." Posts: 3803 Madison WI USA Gender:	Re: Help! Reply #16 - Jan 17^th, 2011 at 6:47pm Where do you live in Mad-town? I'm on the east side, if you ever want to grab a coffee, let me know.
Back to top	Triptans cause increased number of hits and increased intensity. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.&& IP Logged

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Tara Ann CH.com Alumnus Offline It's always darkest before the dawn. Posts: 2719 North Carolina, USA Gender:	Re: Help! Reply #17 - Jan 17^th, 2011 at 7:59pm Brew wrote on Jan 12^th, 2011 at 7:23pm: That dosage of verapamil is not unheard of. As to your doc's withholding of O2, four words: Fire your fcking doctor. All great advice I don't have anything to add except that maybe that should be a new ch.com abbreviation Fire your fing doctor= FYFD Hang in there, your not alone!
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TheVerbalArchitect CH.com Junior Offline I Love CH.com! Posts: 34 Madison, WI Gender:	Re: Help! Reply #18 - Jan 18^th, 2011 at 1:06am Getting O2 on friday, detoxing this week for alt. and agostino coffee would be nice. I am in Sun prairie now but I come into Madison lots. One
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Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: Help! Reply #19 - Jan 18^th, 2011 at 3:02pm Make the time to meet with Thomas for coffee! He's a great guy and has been a big encouragement to me for several years on this board and in person. I'm jealous! Guess I ought to just drive up there myself one of these days. Jerry
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Agostino Leyre CH.com Sponsor Offline "Hit like a phillips head into my brain." Posts: 3803 Madison WI USA Gender:	Re: Help! Reply #20 - Jan 18^th, 2011 at 3:33pm lol, went to dinner in Sun Prairie wednesday and had an open house out there on Sunday. Thanks Jerry! You're welcome to come up anytime.
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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Help! Reply #21 - Jan 18^th, 2011 at 4:03pm TheVerbalArchitect wrote on Jan 18^th, 2011 at 1:06am: Getting O2 on friday, detoxing this week for alt. and agostino coffee would be nice. I am in Sun prairie now but I come into Madison lots. One THIS is the best news ever!!!! Might I suggest waiting to detox till you have the 02? Just a thought. Jeannie
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Help! Reply #22 - Jan 18^th, 2011 at 4:06pm Let me know if you guys decide to get together for coffee. I could probably slice a few hours out of the middle of my day to meet you.
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Karla CH.com Alumnus Offline One of Many and Never Alone - Join OUCH Posts: 3837 x1\|Madison WI USA Gender:	Re: Help! Reply #23 - Jan 18^th, 2011 at 4:35pm Let me know when you two get together for coffee and Ted and I will drop by.
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Dalmay

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Re: Help!
Reply #24 - Jan 18^th, 2011 at 10:23pm

I did like you and followed my neurologist's plan of action- I have now been suffering for over 1 year. I always thought that I was doing the right thing- being a "good patient", now I realize that I was just prolonging my suffering. I have switched doctors once already and am now in a search for a new one. At this point I need someone who is going to work for me and let me be an active participant in my own treatment.

If you are working with a doctor who is not willing to listen and support you, my suggestion would be to look for a new doctor.
I wish you the best luck and health!!!

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