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relative success in treating chronic ch, more than (Read 1287 times)
Charlotte
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Patterson,California
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relative success in treating chronic ch, more than
May 31st, 2011 at 4:10pm
 
My neurologist upped my botox to 100ml, 30 shots, every 8 weeks.  Also am using 80 mg verapmamil 4 times a day and 50 mg inodmethacin twice a day, and O2 when needed. I have the Invacare 10 ml concentrator which actually goes up to about 11 oe 12 and works when needed. I tried both the rebreather mask and regular mask, and like the regular mask better.

The botox takes a week or 2 to kick in and we are going to stretch the time back to every 12 weeks after my retirement in 2 months. 

The botox seems to interfere with the pain message for the head only. All other effects of ch occur, but the reduced head pain make it easier to deal with, especially during high cycle slam time.

It makes the difference between being a struggle to
get through and being debillitated.

My treatment plan is the most succesful one I've had since going chronic with 10 or more hits daily, and no more than 3 days off 2 or 3 times since 2-8-06, which I joined ch.com.

For chronics, I would recommend it. You have time to notice the effects. I would not recomment it for episodics because you would not see the benefits until possibly until the episode was over anyway.

Nothing tried has ever prevented or produce pain free state of being. Just about everything tried has improved some aspect of the total pain.

My goal, which my neurologist has helped me obtain, was to be able to continue working until retirement. That will be in 2 months. I've just about made it!

Charlotte
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Karla
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Re: relative success in treating chronic ch, more than
Reply #1 - May 31st, 2011 at 5:50pm
 
I tried botox for aprox. 1 1/2 years but had no luck with it helping me.  I am so glad to hear that it makes your life much more manageable to deal with ch.  Good luck with your ch and I hope your pain free.
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Karla&&suffer chronic ch &&ch.com groupie since 1999&&Proud Mom of Chris USMC Semper Fi
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Guiseppi
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San Diego to Florida 05-16-2011


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SAN DIEGO, CALIFORNIA USA
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Re: relative success in treating chronic ch, more than
Reply #2 - May 31st, 2011 at 6:11pm
 
Charlotte that's great news! Congrats on being close to retirement...trust me, you'll love it! Wink

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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AussieBrian
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Cairns, Qld, Australia
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Re: relative success in treating chronic ch, more than
Reply #3 - May 31st, 2011 at 7:12pm
 
Proof that the beast has wrinkles.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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