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I am a 77 year old caucasian woman who has had chronic CH for about 5 years now. I am currently able  to control both frequency and ferocity of  Ch with 3 doses a day, about 360 mg. of Verapamil. I believe the CH may have been triggered by excessive surgical procedures in the attempt to retrieve an errant parathyroid gland from my chest. This entailed 2 thoracotomies. After being diagnosed by a "headache specialist", and finding no treatment that helped, I found myself on my own, and contemplating suicide as the pain was more than I could bear. Thru Cluster Busters  found many who wanted to help and tried many avenues, but the only one that has really helped me to somewhat regain my formerly very active lifestyle was Verapamil. So far, no Dr will help me to obtain  oxygen.  It is now my understanding that Verapamil increases my chances of heart attack by 60%, as well as opening the door to cancer. I am still operating a small business of my own creation, and that is beginning to wear on me. Once more I throw myself on the mercy of Cluster Busters. In the past I have used an excessive amount of vitamin D3, which ultimately helped to create kidney failure as my calcium level became dangerously high. I am guilty of not seeking medical help often, as it has not been successful in the past. So, here I am, looking forward to March Madness (Louisville, Ky) as a crazy basketball fan, trying to find a diet that will allow my system to function nearly normally so that my husband and I can lead the best lives possible. Can anyone help me?

Thanks,

gail crutcher

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My best advice would be to get your own o2 set up through a welding supplier. That and read this whole site. All kinds of help here but we have to be our own advocate. And don't take no for an answer from your dr. Get a new one that will listen and help they are out there.

Edited by Rod H
Bad English

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Theory and implantation and share your busting stories is a good place to poke around for new ideas. You will find info on all kinds of alternate treatments. Ask whatever questions you have on that part of this site and people will answer you as it is a closed part of the board only open to members. 

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Hi Gail! Been a while, which is good on your end. 

They won't prescribe O2 because Medicare will not pay for it. Headache On the Hill is an effort to change that. Meantime, that is no help to you. You can set up with welding O2 if that interests you. I use one for the same reason. It is pretty simple and works well. You would need to buy an O2 tank, a regulator, and the Cluster Mask for the best aborts. It is the top mask I think. When you run out of O2, you just swap the empty for a full tank. 

Self-diagnosis: Yes, we have to do that a lot! Especially women like us. They don't think of CH much where we are concerned. And they run on the old adage that you 'age out' of CH by 65 or 70. That is bunk so far as I  have seen and I am in my seventh decade too. 

So far as diet, many will go gluten free or close, some like the Ketogenic. I think it is best to eat what you like, but I have eating issues. Avoid fermented foods, MSG, and limit wheat and nitrates and their kin. No Blue Cheese. :( 

Do you chug some caffeine at the first sign of a hit? It helps a lot. 

I see other replies, so I am closing now! 

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Thanks to all who have responded! Pretty much I have decided to live, live, live till I die, and am very grateful to have had this many good years. It is my understanding that oxygen is used strictly for an abort, not necessarily to prevent? Since I am chronic, that would mean that daily at least, I'd need to try to abort a CH. Just the thought of having another one gives me chills, as it's been a while since I've had a full blown one. So, maybe I should just continue the route I'm on, understanding that I've increased my chances of heart attack by 50%, as well as cancer. Not a happy overview, but neither is waiting for the onset of another CH to use oxygen. Weighing my options.  Yes, I'm a chicken now that I don't have them anymore, and NEVER want another one. Choices~~we live and die by them! Thanks again and I'll go weigh for a while!!!

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Gail',

Batch is very insistent that if the full D3 regimen is followed strictly, there are no calcium-related issues. I can see why you might not want to test that regimen again, but if you do, you can and should contact Batch directly for more information. (Open the "envelope" icon at the top of the page and type Batch in the "To" line.)

This file discusses welding O2 in some detail: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/  

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On 3/19/2019 at 10:22 AM, gail CRUTCHER said:

I am a 77 year old caucasian woman who has had chronic CH for about 5 years now. I am currently able  to control both frequency and ferocity of  Ch with 3 doses a day, about 360 mg. of Verapamil. I believe the CH may have been triggered by excessive surgical procedures in the attempt to retrieve an errant parathyroid gland from my chest. This entailed 2 thoracotomies. After being diagnosed by a "headache specialist", and finding no treatment that helped, I found myself on my own, and contemplating suicide as the pain was more than I could bear. Thru Cluster Busters  found many who wanted to help and tried many avenues, but the only one that has really helped me to somewhat regain my formerly very active lifestyle was Verapamil. So far, no Dr will help me to obtain  oxygen.  It is now my understanding that Verapamil increases my chances of heart attack by 60%, as well as opening the door to cancer. I am still operating a small business of my own creation, and that is beginning to wear on me. Once more I throw myself on the mercy of Cluster Busters. In the past I have used an excessive amount of vitamin D3, which ultimately helped to create kidney failure as my calcium level became dangerously high. I am guilty of not seeking medical help often, as it has not been successful in the past. So, here I am, looking forward to March Madness (Louisville, Ky) as a crazy basketball fan, trying to find a diet that will allow my system to function nearly normally so that my husband and I can lead the best lives possible. Can anyone help me?

Thanks,

gail crutcher

Avoid nitrates, alcohol, MSG, and nicotine. I have had good luck with verapamil too but seem to build a tolerance. From what I have learned here and on my own:  try melatonin at night (might have helped me), try welding oxygen (going to try my next cycle), I wouldn’t try Sumatriptan (imitrex) unless your doctor gives your heart/circulation a clean bill of health. Sumatriptan stops my headaches %100 of the time but I’m episodic and split my doses. 

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