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Clusterman59

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Pain free is AWESOME!!

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San Diego, California
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New Specialist team and Treatment Plan
Sep 16^th, 2012 at 3:40am

Hey Fellow Clusterheads!
Finally after 35 years I have a good specialist team and treatment plan This is what they have for me starting
on Tuesday......The I/V drip is called DHE they are going to give me vitamin D3 as well while in the hospital as it is a good preventative treatment for Clusters and I will be taking it on a regular basis. So right now it looks like I will be on Depicote, Topimax, vitamin D3 and imitrex injections along with my 2 new rebreather masks for 02 I am getting one for the car! And the two day I/V drip of DHE in the hospital. They also told me about red bull and how it is helping so many abort CH's and to keep some in the fridge and to use melitonin 10mg 1 hour before sleep. They are still debating on the Imitrex because I have so many Clusters daily and are considering alternatives but are putting me on it for now as an abortive treatment for the severe CH's. He Also told me that this is "Just a start" and they are aggressively pursuing a permanent plan after they see how this is working for me. Also the three neurologists just diagnosed me as a 35 year "Chronic" Cluster Patient. I have been diagnosed before 3 times but never for my whole Cluster history. ......Johnny

P.S. If you were wondering about the tuna fisherman picture below,this is what I did for 16 years and did it while having many Clusters! This work saved my life.

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« Last Edit: Sep 17^th, 2012 at 11:40am by Clusterman59 »

Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever!
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: New Specialist team and Treatment Plan Reply #1 - Sep 16^th, 2012 at 9:29am Don't get your hopes up about the IV DHE. It makes for a nice break, because it usually works very well while it's happening. But most here (myself included) go right back to getting slammed within 24 hours after it's done. Hopefully you've got a few more tools in the arsenal now.
Back to top	"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand IP Logged

Clusterman59

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Pain free is AWESOME!!

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Re: New Specialist team and Treatment Plan
Reply #2 - Sep 16^th, 2012 at 10:06am

Hey Brew!
Thanks for that info,at least it will be a nice 2 day break!
With the other treatments hopefully there will be more pain free days. I don't want to get my hopes up and am a little mad at my self for getting so excited lately but it's just been such a long road without the proper treatment that it's hard not to!
Thanks for your concern. Wishing you pain free days.......Johnny

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Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever!
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ttnolan CH.com Veteran Offline beats me Posts: 247 Scotts Valley, CA Gender:	Re: New Specialist team and Treatment Plan Reply #3 - Sep 16^th, 2012 at 3:02pm Don't tell me you caught one of those while tuna fishing?
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Batch

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Control The Beast With
O2 & D3 You Must

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Bremerton, WA
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Re: New Specialist team and Treatment Plan
Reply #4 - Sep 16^th, 2012 at 10:06pm

Hey Johnny,

It sounds like your doctors have a plan to control your cluster headaches that covers all the bases.

What medical facility are you using and do you have a name for the physician who prescribed the vitamin D3? Was the vitamin D3 their idea or yours?

Did they do a blood test for 25-Hydroxyvitamin D, a.k.a. 25(OH)D, the metabolite of vitamin D3 that's used to measure its status? If so, what was the concentration, and how much vitamin D3 are you taking daily?

If you're taking 5,000 to 10,000 IU/day vitamin D3, the odds are you'll have a favorable response in one to two weeks with a significant reduction in the frequency and severity of your CH or you'll be pain free.

Take care and please keep us posted.

V/R, Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Clusterman59

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Pain free is AWESOME!!

Posts: 237
San Diego, California
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Re: New Specialist team and Treatment Plan
Reply #5 - Sep 16^th, 2012 at 11:24pm

Hey Batch!
Yes It was actually my Idea after reading the study's on this site and printing them out and bringing them to my appt.
and they agreed that it would be helpful and definitely worth doing. Also I did do the blood work but have not got my results back yet and I am going to UCSD in San Diego and my GP is the one that said it would be worth trying and his name is Dr. Gene Kallenberg and is also the one responsible for setting me up with the neurologists there and getting this whole thing going after considerable aggressive behavior on my part!! lol! Wink

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Batch

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Control The Beast With
O2 & D3 You Must

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Bremerton, WA
Gender: male

Re: New Specialist team and Treatment Plan
Reply #6 - Sep 17^th, 2012 at 8:37am

Hey Johnny,

Thanks for the info... and I understand aggressive behavior when dealing with some physicians about treatments for our disorder...

CH is an orphan disorder and rare so it's not uncommon for most physicians and too many neurologists to be clueless when it comes to the most effective methods of CH intervention...

Accordingly, we cluster headache sufferers (CH'ers) need to be our own best advocate... Sending the clue bird in for a low pass on our PCPs is usually a good idea to get them pointed in the right direction in treating our disorder.

When the results of your lab test for 25(OH)D come back, I'll email you some info you can send to Dr. Kallenberg.

As a Professor of Clinical Family and Preventive Medicine and Chief, Division of Family Medicine at UCSD, he should be up on the fact that vitamin D3 deficiency is pandemic. He also needs to be aware of latest RCTs indicating the many health benefits of vitamin D3 therapy with all the cofactors...

Take care and please keep us posted.

V/R, Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Clusterman59

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Pain free is AWESOME!!

Posts: 237
San Diego, California
Gender: male

Re: New Specialist team and Treatment Plan
Reply #7 - Sep 17^th, 2012 at 11:34am

Hey Batch!
I just got a call from Kallenbergs office and he just sent me
The D3 to the pharmacy and my lab work came back and the only deficiency That I had was Vitamin D3!!! I don't have the stats on that But will ask for them and will let you know about the D3 therapy. Dr. Kallenberg is an excellent GP and has helped me through so much shit, I had 17 operations and he did the follow up on 9 of them 7 of which almost took my life But that's another story!
But is very willing to help me and in his busy schedule I just don't think he truly realized how badly I was suffering until i let loose! now he has got everyone working on my treatment!
It is about time!!! Ttyl... Brew, thanks for your interest!.....Johnny

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Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever!
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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