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New CH.com Forum › Cluster Headache Help and Support › Cluster Headache Specific › Help!

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Help! (Read 5473 times)

TheVerbalArchitect CH.com Junior Offline I Love CH.com! Posts: 34 Madison, WI Gender:	Re: Help! Reply #25 - Jan 19^th, 2011 at 12:05am I agree, i was messing with crappy docs for the past 3-4 years,i feel like i wasted all that time when i could have been here 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 #26 - Jan 19^th, 2011 at 1:18pm Read and acknowledged, Brew and Karla.
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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 #27 - Jan 19^th, 2011 at 4:22pm Copy me in on that too and I'll try to shake it up there. You really aren't THAT far away and LouCon was WAY to short!
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Samiam

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Re: Help!
Reply #28 - Jan 25^th, 2011 at 8:45pm

Like I said before. Be your own advocate....If you don't fight for what you NEED no one else is going to fight for you.

Read and print out everything you can get your hands on. Be informed. Some Dr's get intimated by well informed patients and let their ego's get in the way. If this happens fire them and move on.

This cycle I am working with my GP. He's has been wonderful and has given me what I needed. He after speaking to me knew I was not on a drug seeking mission and understood that I have lived with these for over 30 yrs and I may have more knowledge then he at this point. He ordered the O2 on day one and asked how I was to use it. He ordered the imitrex and left it to me on how I needed it and he gave me fiorcet to use as I saw fit (I only have used 3) I sometimes get migraine with clusters.

Stop trying to be nice and polite when you are dealing with a Doctor. If they are not going to help you in the first visit move on. Those that understand Cluster understand when we go in cycle we tend to need a lot of hand holding until we fall into a routine. I know I do. Once there I can then help other. But we all have bad days and panic when we are in pain just part of the cycle.

Blessings,
Sami

"A smart man learns from his mistakes......A wise man learns from the mistakes of others"

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dault

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Pittsburgh, PA
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Re: Help!
Reply #29 - Feb 6^th, 2011 at 11:53am

Just wanted to throw out my Verapamil doses. I love my new doctor, he is the Director of a huge Headache clinic and answered every question I had and put me on a plan that is working so far. You can check my post in the Getting to Know Me area if you want to know the full plan I'm on.

Verapamil:
Days 1-6: 80 mg 1x/day
Days 7-9: 80 mg 2x/day
Days 10+: 80 mg 3x/day

I do this until I have 30 days of control, then I'm off it. I appreciate that my dosage is not extreme and that I will not be on it forever. I am episodic not chronic, just FYI.

And about O2, I just got mine this weekend...it's amazing.

dault

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Help! Reply #30 - Feb 6^th, 2011 at 12:12pm A doc that's knowledgeable AND listens to you, congrats, that's a real find. If 240 mg works as a prevent for you, that's great. If not, some go as high as 960 mg a day to get relief. And 02, yeah, it's pretty sweet! Joe
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dault

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Re: Help!
Reply #31 - Feb 6^th, 2011 at 12:30pm

Thanks man, I knew from the moment I met him that he was legit. He did an exam and then told me exactly when I had my last headache and where it was. We then went to his plaque filled office (he was incredibly sincere and empathetic) and discussed my situation for over an hour. I was impressed with everything about him and will pass any and all information on that I can find. I read a Clinical Report that he gave me called "Cluster Headache: Diagnosis and Treatment" published recently in 2010. He said it was one of the most recent papers published on the topic and really gives a great overview of CH. I hope I'm able to contribute as time goes on. I've dealt with them since 2003 so I guess, like most of us on here, I know what I know...

dault

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Help! Reply #32 - Feb 6^th, 2011 at 4:00pm Quote: He did an exam and then told me exactly when I had my last headache and where it was. How, exactly, was he able to pull this off?
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dault CH.com Newbie Offline I Love CH.com! Posts: 12 Pittsburgh, PA Gender:	Re: Help! Reply #33 - Feb 6^th, 2011 at 4:43pm I have been to specialists before and this man was skilled beyond anyone I've ever talked to. I do believe the main reason he was able to be so specific was due to the irritation of the blood vessels in my right eye. How he knew it down to the day...experience I guess. dault
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