gail CRUTCHER

I should add that for the most part I have a great quality of life. I am VERY active and still operate a small business. Maybe if i'd not had such an illness free life I'd be less inclined to whine now! I recently included a new Dr. who introduced me to the Emgality concept, and the Eli LIlly concept of huge profit, as well as a "helper" who offered to allow me to join their club for a fee and a huge obligation; had to pass on that. Is anyone familiar with the success of that drug for CCHR's? I can't imagine how I could justify paying nearly $5,000 a pop for it. MEANWHILE, life goes on and I feel great right no and have learned that the trick is to really enjoy these times!! Thanks so much!!

Thanks so much for your understanding. I am aware that when I hurt, I don't think very well!! I do respond to O2, and used it in the middle of the night last night. When I set about a new experiment (daily), sometimes it doesn't go well and I pay a price!! I continually try to find a way to reduce the amount of verapamil lI use, but decided to check my BP yesterday and realized that I needed to remember that too! Too much to remember!! It was very high, so it's back to the V. I take 4 a day, and don't like doing it. Until I reached 70 or so, I was drug free~~and then along came you know what! I detest the idea of drugs, but know that if I choose to remain alive, which is a choice I face often, I will be using them. If you have a better idea, please let me know!! Thanks so much. gail

Hello! I did not mean to imply that sumatriptan caused kidney failure; so sorry.

So, will an O2 concentrator work?

I have just had my first experience with oxygen rental, and while it did help me, it wasn't reallyo what I needed. I'm wondering if and O2 concentrator would be best? Many of you have lots of experience with oxygen and I'd love to hear from you as to what you think is best. I know NOTHING. The concept of going to a welding shop and trying to piece together my own system sounds daunting. Thanks so much.

I have tried multiple times to register for your newsletters, but am repeatedly told that The contact list 1569107038 does not exist, whatever that means. I am trying to learn how I may obtain informaiton on mushrooms. I know, a very big secret. So big that I can't even learn about it. Is there no help for me? I have posted here before but this has me totally shut out.

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!!!

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

getting a headache trying it learn to navigate this site!!! i find no help with "how to" and i'm very sure it's there, but I'm too green. How to get to theory and Implementation is well hidden~~

Learning to navigate the forums here and trying to find Theory & Implementation~~~

I can't even find a "reply" option, so I'm trying "quote" and hope that works. Thanks for every bit of help you offer. How can I find the Cluster 02 kit? Yes, Vera;pamil did help reduce the frequency and ferocity, but sumatriptan has remained my go to. 100 mgs elevates my BP leaving me with one more fight. Now my blood calcium is very elevated as well,and I know I MUST leave sumatriptan behind.WHile it has made life possible, it is also shortening my life every day.

Thanks so much for trying to get me on my way. Tomorrow my main objective is to try to get one of my Drs to write me a prescription for it and I may be just dreaming. My PCP quit while I was in the hospital just a short while ago~I must've driven her to it! In the meantime, I've picked up a new Dr (nephrologist, who BTW suffered CH's while serving his residency) who seems to be trying to help me. Against the odds, my CH's began in my early 70's and I wasted a couple of years with a neurologist who never had the intention of doing more than dispensing drugs. None of them worked and when I'd run the gamut he told me simply there was nothing he could do for me. Too bad I wasted that time.SInce then I've seen just about every kind of Dr, none of which was able to help. So Cluster Busters is my go to help, and by now my Ch's are more frequent, usually 2 a day. To say that I"m desperate would be an understatement, but I do know I'm not alone. I wish I could watch someone using oxygen treatments, as IS think that wold help me, rather than just reading how to.Are there any you tube presentations that you jnow of? I am clinging to the hope that this will help me. Since no one seems able to discuss the use of mushrooms, surely there is a way we can communicate about it meaningfully. I don't understand all the abbreviations used here that seem so common~~but this is all new to me. Phone numbers? PM? I have no idea what that means . As you can see, I need all the help I can get and will go to the welder if that is the only I can have oxygen.

Gail here~~trying to learn how to set up welder's oxygen for myself. Never did anything like this, but found that with a tiny little cannister of Boost oxygen, I aborted a CH. yesterday. Bought all we could find today and just about have taken care of another CH. MIne are chronic, and usually twice a day. Can someone give me a play by play? Thanks.