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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hey there, I'm new to site, but HA's are old news!
        
(Message started by: sue_g on Aug 18^th, 2007, 8:29pm)

Title: Hey there, I'm new to site, but HA's are old news!
Post by sue_g on Aug 18^th, 2007, 8:29pm

:) Hi All, Just looking over a few of the comments out there. Wow! It's hard to believe that theres so many of us out there, but yet, friends and family members that you talk to, don't seem to know anything about Clusters.
I have been suffering from these HA for 25 years, the co2 is a great abortive. Just changed meds from taking Antitrypeline (sp?) on a daily basis to the vermapile 120mg. I don't like this...they are still waking me up at night, and more intense. I'm going back to the MD to check it out! Anyways, nice talk'n to ya all.
Sweet dreams!

Title: Re: Hey there, I'm new to site, but HA's are old n
Post by Linda_Howell on Aug 18^th, 2007, 9:32pm

Hi Sue and Welcome. I'm sure when you said C02 you meant 02 right? ;) 100% oxygen at 12 to 15 lpm with a non-rebreather mask.

120 mg. of Verapamil is quite low..might want to ask your Dr. if you can raise that a bit.

Try the energy drinks like red bull in the meantime..they help a lot. Personally I like coffee so strong that a spoon stands up in it, but to each their own.

Linda

Title: Re: Hey there, I'm new to site, but HA's are old n
Post by sue_g on Aug 19^th, 2007, 7:45am

Hi Linda, Thanks for the tip! I will ask about increasing the meds tomorrow. Can you tell me what your daily intake is? & at what time of day it's best to take vernapamil? I've been reading some of the comments on this site, with that said..I drank quite abit of water yesterday...no HA last night heehaa...maybe it's just a coincidence.
Right side - Cluster started in April, ran it's course until July. Had some dental work done late July...now it's the Left-side, I don't know if there's a connection to the dental work...who knows? Thanks for the help! Comments would be appreciated.

Title: Re: Hey there, I'm new to site, but HA's are old n
Post by barry_sword on Aug 19^th, 2007, 7:57am

Hi Sue, sorry you had to be here but this family is here 24/7 if you need a shoulder or have any questions.

I started on 240mg of Verapamil daily and it was not enough. My Neuro upped it 360mg daily but still not enough. My heart and blood pressure were both very good so he upped it again to 480mg daily and that is working well so far.

o2 is a godsend for me. I am into my 10th month with this cycle but with the right dose of Verapamil and my o2 I am enjoying life again.

Read all there is to read on the left of this page and feel free to ask any questions.

Barry

Title: Re: Hey there, I'm new to site, but HA's are old n
Post by sue_g on Aug 19^th, 2007, 8:13am

Thanks Barry, Questions: I'm not sure if I'm in the right folder to ask these questions, but...while taking the vernapamil.. as time goes by, can you tell/estimate when the cluster maybe over? At that time, do you stop taking the meds...until a new Cluster starts again? I guess I can ask about that tomorrow, with my GP. I have a new neuro, but she is in Ottawa, 1.5 hours drive for me.

Title: Re: Hey there, I'm new to site, but HA's are old n
Post by barry_sword on Aug 19^th, 2007, 8:28am

on 08/19/07 at 08:13:12, sue_g wrote:

Sue, you are in the right folder to ask. Do not just stop taking the Verapamil. Talk to your Doc about weening off of it gradually.

I thought I was finished my cycle a couple of times but I was not done at all. I pay very close attention to my shadows, and as long as I am having them I will stay on my meds.

Hope you find your right cocktail, as we call it, and you get some relief soon.

Take care, Barry :)

Title: Re: Hey there, I'm new to site, but HA's are old n
Post by michael on Aug 19^th, 2007, 2:56pm

Hi Sue and welcome.

I used to cycle every 6 months. One on the left then one on the right.

Then the left cycle stopped so I just cycled once a year on the right

Very occasionally though, I will get a left cycle immediately after a right cycle. I will also get a very occasional lefty in a right cycle.

Hope you followed that. It is a very strange beast indeed.

Mike

Title: Re: Hey there, I'm new to site, but HA's are old n
Post by phil_h on Aug 19^th, 2007, 3:23pm

[smiley=yikes.gif]

Title: Re: Hey there, I'm new to site, but HA's are old n
Post by Bob_Johnson on Aug 19^th, 2007, 4:30pm

Print and take to the doc to use as a tool to guide your discussion of options:

http://www.plainboard.com/ch/chtherapy.pdf

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)