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Topic: Thanks Everyone! (Read 336 times) |
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eyhavhedaches
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Thanks Everyone!
« on: Feb 12th, 2004, 10:24am » |
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Wow,
Lot's of people to talk to, this is great and somehow feel that this website will be twice as effective as my doc has been. Thank you everyone, I go to see my doc on the 26th of this month to discuss how my neuro visit went. He had verry little knowledge of CH but wouldn't admit it, however he did tell me that he could count how many times he's diagnosed people on one hand, including me. I live In MAINE and well the knowledge pool here is a little dry! I am going to TELL my docter that I want a prescription for o2. I am also going to TELL him that I want off the depakote, it's making my hair fall out(already told him this twice) and I don't like it. On a good note my cycle for this year is just about done, yeah. The prednisone taper did not work this time around, it's almost like these damn headaches figure out what I'm using so they can beat it. I think my verapimil dosage is too low I am only taking 120 mg a day. My doc says it's dangerous to go any higher. ???? alot of people I have heard from has told me that they are on 400 mg or higher! I am kinda worried about going off the depakote because I am bipolar level two and not sure if theres is an alternative besides lithium and I don't think I want to use lithium because of what I have heard about the drug. It's harsh and people have a hard time staying active in their lives while on this drug, so I have heard. I am anxious to make friends with all of you because you understand which is something I have very frequently experianced through my battle with this beast.
I can tell I already have made a few from my very first post. You guys are great and if I could take the pain away from all of you I would without even thinking about it. Your right about one thing, WE ARE STRONG PEOPLE!!!!!!!
Have a good day everyone, ADAM
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When pain is a daily event, the smallest of things can be a miracle!
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TxBasslady
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Bass fishin' is a h00t It's the catchin' that sux
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Re: Thanks Everyone!
« Reply #1 on: Feb 12th, 2004, 10:58am » |
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Good luck at the doc, Adam.
You might print out the 02 info and take it with you when you see the doc.
It is great to find folks that understand the pain. It's damn difficult to explain it to someone who has never experienced it.
Lifelong friends can be made here. You'll never have to feel alone again. When things get tough, all you have to do is post........and the responses and the support will be forthcoming.
Let us know how the visit goes on the 26th.
Lots of PF vibes being sent to you from the great State of Texas,
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas! 
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dodie
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NO BRIGHT LIGHT - BRIGHT LIGHT !!!!!
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Re: Thanks Everyone!
« Reply #2 on: Feb 12th, 2004, 11:55am » |
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From one new bee to another .......
good luck at the doc. stick to your convictions.
Listen to your body, you know what is good for you.
I get frustrated with the docs too.
I call them "guess work in a white coat".
It sounds like the people on this site have found out more by themselves than any doc has been able to tell them, me included.
Keep the faith.
Dodie
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dodiehowe
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t_h_b
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primary chronic since 1999
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Re: Thanks Everyone!
« Reply #3 on: Feb 12th, 2004, 8:02pm » |
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Suggested STARTING dose is 240mg. My neuro doubled my dose to 480mg on my first visit to him without me having to ask. You can take up to 960mg as tolerated and I have read here of people on 1200mg. (You shouldn't alter your prescribed dosage without your MD's knowledge.)
A common and effective practice is to prescribe verapamil together with prednisone at the beginning of a new cluster period. After 2-3 weeks of this therapy, the verapamil generally exerts a sufficient preventive effect to permit most patients to rapidly wean off prednisone without suffering a flare up of their cluster headaches. The starting dose of verapamil is 80 mg (one tablet) 3 times a day. The dose may need to be doubled, tripled, or even quadrupled (to 960 mg daily), if tolerated, to adequately suppress the appearance of cluster headaches. Verapamil's major side effect is constipation. Verapamil is effective against both episodic and chronic cluster headaches (which are just different patterns of the same entity).
http://www.upstate.edu/neurology/haas/hpclrx.htm
Maybe you could print that out and show it to your neuro.
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| « Last Edit: Feb 12th, 2004, 8:04pm by t_h_b » |
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Paigelle
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You will learn more here than most docs know! good luck!!!!
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stevegeebe
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Re: Thanks Everyone!
« Reply #5 on: Feb 12th, 2004, 10:33pm » |
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Welcome to you.
Educate yourself. Establish a dialog with your Doc. You will likey be doing them a favor.
Know what you are taking is doing to you.
Don't be scared to change if what you are taking is not working. What works for me may not work for you. Without a back and forth with your Doc, you've got nothing.
Let us know how you are doing.
Steve G
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Callico
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Re: Thanks Everyone!
« Reply #6 on: Feb 12th, 2004, 11:09pm » |
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I agree that your dosage of Verap is WAY to low. My Dr started me out at 80 and upped me 40 every three days until I got to 240 then went to 240in the am and 120 in the pm. After two weeks he upped it to 240 2xs a day. When I went to 300 in the am my BP bottomed and I had to drop back down. At that point he put me on 300mg of Lithium 2xs a day along with the Verap. I love it! They don't stop the HAs, but the frequency is down and the intensity is about half of what they were for th most part with only a few breakthroughs.
The only side effect I have found with the Lithium is that I don't get so depressed as I did. I think though that is more a factor of the pain being lessened so greatly. I would suggest you try it in combination, but get to a level of Verap that you can tolerate first so you can tell what is doing the good for you.
Jerry
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"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
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don
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Maine = God's Counrty
It was while livine in the Unity/Thorndike area about 28 years ago I started getting these nagging little headaches that could cripple a horse.
The effective dosage of verap for me has been 480. It's dangerous if you have low blood presssure to begin with. Other than that I'm not sure. Depends on Co-Occuring disorders.
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