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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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.

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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Don't tell me you caught one of those while tuna fishing?  ;D

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

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!  ;)

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

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 :)