ThatHurtsMyHead

Barbara, Keep hope alive. While I may not be the best person to help with your questions on chronics, I know someone will be along shortly that can. I'd take a hit for you if I could, as I know the depths CH can drag a person. Things will get better!!! Jeff

Anyone feel free to correct me but in my opinion a person wouldn't necessarily need 2 M tanks for a person that's not chronic. M tanks are significantly larger than E tanks. Can't be moved without a dolly etc. Particularly I wouldn't think you'd need two? (I keep several E tanks and just rotate having them replaced as needed at $8 each) Just a suggestion, but if you're getting hit a lot, 1 M for home and maybe three E tanks for the car / work. (that way you can rotate the E for fresh tanks). Just call them for a fresh M when it starts running low (instead of paying for 2). In my opinion that would provide you with O2 anywhere you go (in the car as well) at a reduced cost of having a second M just sitting around. Good luck, Jeff

John, Glad you're getting closer, we'll help you the rest of the way, but you need to be FIRM with both the Dr and Med supply company. Here's an EASY fix for you. Call the medical supply company back. Tell them the concentrator won't work as it's too bulky to move with you to your various work locations. Tell them you need tanks that you can have at work and at home, and an 'E' for your car!! oh, and I don't know what you're planning on paying, but the concentrator they delivered for me (incorrectly as well) cost around $250 per month just for the rental. My 'E' tanks are only $8 EACH!!! You have several motivations to get tanks instead of the concentrator 1) Almost unanimously works better and 2) cheaper, particularly if you're paying for them. I'll PM you my number. Feel free to call if you want. Jeff

Completely agree with Alleyoop. I had an oxygen concentrator for a little while and is completely useless. Won't deliver high enough volume O2. Since you have the script for "o2" you should be able to call them back and ask for tanks. Jeff

John, If your medical supply company is like the two I've used, you can get as much O2 as you want. They just need the paper from the doctor saying "O2". Glad to hear you have some relief coming! Jeff

Bejeeber, Agreed, thanks for clarifying. HBWR stomach upset. Jeff

Dan, Funny you say that Dan, I've thought the same thing about seeds. I get terrible stomach upset and cramps with them and have wondered if the sid option wouldn't be easier. I watched a natgeo show last night on MDMA / Ecstasy. I have to say I was very impressed with the non biased presentation. They followed a few people before, during and after taking MDMA explaining the effects on the body and brain. It was WELL put together! One item they may have been just a touch bias on is they showed two examples of people that had died from MDMA. I know they certainly can't promote drug use, but a small note that per capita Viagra or even Tylenol has a higher death rate if high doses are taken, could add a little perspective for the viewers. Good luck with the interview / Show!!! Jeff

All, I'm curious if anyone with CH is in my 'neck of the woods'. I can honestly say that in my 23 years of having CH I've never actually met anyone else in person with CH. Needless to say I feel a connection through our common oppressor. ha.. If anyone is around Seminole, Florida (Tampa) wants to get lunch or something PM me. Jeff

Oxygen will change your life...!!! Period! (for the better Jeff

John, Sorry you're going through this with the Dr. I 100% agree with everyone above WFT... FIRE HER A$$..... Doctors are everywhere. In my opinion the ONLY reason a doctor would withold O2 is that the drug companies can't get a cut of your hard earned money!!!!!! I'd find another GP, setup the appointment with the expectation set before the appt that you have CH and need a 'new' script for O2. (Bring your O2 documentation etc). I'd never look back at your prior doctor. She clearly doesn't understand CH nor appears to care... If used properly O2 is simply put a LIFE SAVER! Good luck and PFW to you! Jeff

Dereksgirl, I'm sorry to report that with my 23+ years I've gotten to know my CH I've found that the Dr perscribed meds always seem to extend my cycles. Prior to finding clusterbusters I paralleled it to the fact that I had to take a certain amount of pain with each cycle. A lot of close together high pain hits, or (with the Dr meds) slightly lower kips, but my cycles sometimes went up to 6 months long. Jeff

Shahooty, Glad to hear there's A doctor out there somewhere that gets it... When I was first properly diagnosed years ago I was perscribed Verapamil and it worked beautifully. I thought I had found the miracle drug for my clusters. I came off of it a few weeks after I was sure my cycle had ended. When my next cycle started I again got another perscription for Veramamil, but this time wasn't so good. Firstly it didn't work and the attacks seemed to actually be worse it also caused heart palipitations called PVC's Premature Ventricle Contractions. I had to stop the Verapamil and again start searching for something else. I hope it works for you, and you can get some relief. Pain Free Wishes! Jeff

Ron, Absolutely 100% right on! There's a fine line of perception that given the way natgeo goes, could paint us as desperate sufferers of a debilitating condition OR drug abusers seaking an excuse. I now worry which path they will take. Noble and just or sensationilism that might sell more add space. Obviously it's out of my hands, so can only wait for the outcome. Jeff

TrippleT, I think you'll find many here with similar stories of the crap doctors perscibe for our condition. I started heart palipitations after taking Verapamil. The Dr said there was no way Verapamil could cause heart palipitations. He was wrong as it started shortly after starting the verapamil. I've since read several others with CH also started heart palipitations after taking verapamil. (enough of my rant. ha!) I can attest to the solutions on this board do WORK! I have my life back 100% due to this board! Review the documentation and ask questions as needed. Pain Free Wishes To You, Jeff

Agreed with the opinions here. My only concern is that natgeo NOT add sensationilism, or focus on 'how to get drugs'. That could easily back fire. We NEED these treatments. Living with CH is a death sentence realized for some sooner than later. We certainly don't want public opinion getting the perception we get a 'little headache' and that's an excuse to use illegal drugs. There's a fine line between acceptance and tollerance. I definitely support you Hipshot! Just hoping they're not trying to turn the show into a focus on drugs instead of the condition and what drugs work and don't work. I guess there's a level of faith we have to put into natgeo, to get the word out. Jeff

Clusterfields, Do what you have to, to get the O2. It's a life saver. I'm 10% (misdiagnosed) with sinus headaches from the Army. Started shortly after my first rotation overseas and a head injury. Good luck, Jeff

Dan, I would share your concern. The focus should be on the condition and treatment. Not focus on how to get drugs in the mail... Right out of the box that sounds like bad light on our condition instead of getting the word out. Thinking it through more it could cause a reverse affect if legislators think people could get schedule I drugs in the mail. I for one am excited Natgeo is doing a special on our treatment, but not excited as to how so many shows these days are built on sensationalism instead of good reporting. Good luck on your decision, Jeff

Zip, Sorry to hear your condition has worsened. You're in good company here regarding what you're going through. I'd recommend Oxygen as an abortive and many use the seeds option (HBWR or RC) for cycle termination. I for one wouldn't mind the option you mention as I've heard it comes without the nausia and stomach cramps HBWR has. Good luck finding it, but if unsuccessful you might try some of the vendors listed on this site for HBWR or RC. Jeff

Thats simply AWESOME Ting!!! I think we all may have a tendency to withdraw from life particularly while in our clusters. I know I did... It's a shame many of us have to stay 'in the closet' about our treatment. I'd love to share my life changes (how and why) like you have, with others I interact with. Due to my job it's simply not possible. Keeping a paycheck is pretty high on my priority list.. ha. I'm so happy for you Ting!! Jeff

CHFather, Good analysis. I'm sure I'm like most, that once I found an alternative means of stopping my CH attacks. I've not gone back to the Dr. ALL of the medicines that my neurologist and primary doctor perscribed either didn't work or had terrible side effects. I stress TERRIBLE... Nothing as benign as the alternative methods here. (Have I mentioned lately I have my LIFE BACK!!! It may be good that everyone approach their doctors and tell them of this wonderful solution to their CH illness. I doubt any Dr would change the way they perscribe medicine, simply due to liability. (if they perscribe a medicine that doesn't work or causes another illness, they're not accountable, the drug company would be). If enough of us tell enough neurologists and doctors, that might be the start of changing perceptions. Jeff

O2, O2, O2, The only abortive that works for me and works everytime if taken quickly (w/o side effects). I'm sure you'll see that it's highly recommended from others on the board as well. Imitrex... While it works, it leaves me in a mental fog for days after taking it. With O2 my mind is clear as a bell 15 minutes after the CH hit subsides. Highly recommended to get an O2 perscription. You'll find a wealth of knowledge on this board for a few alternative methods of not only aborting attacks, but how to end your cycles, or prevent them from starting. None of the Dr. perscribed drugs worked with my hits or cycles (or worked but had hideous side effects not found in the options presented on this site) Welcome to your new online family! Good Luck and Pain Free Wishes to You! Jeff

Welcome Booj, I'm sure you'll find most on this board are very helpful in answering questions you may have. From your post I'm unsure as to what you're attempting to use to 'bust'. I presume you have Cluster Headaches? The more detailed information the better. There is a plethera of knowledge from many different people on this board. Some use different products by different methods. Some have CH while others are husbands, wives, mothers or fathers of someone with CH. How long have you had clusters? Chronic or Episodic? Do you have oxygen? I started my first cycle when I was 18, long before I was properly diagnosed, so you have something going for you! and are in the right place! Please read, read, read. The best place to start is the Links page on this site (cluster headaches only). http://www.clusterbusters.com/links1.htm There's information on various methods mainly being LSD, LSA and Mushrooms. Once you've familiarized yourself with the various options, please ask any questions you may have. Looking forward to your response, Jeff

Laura Ann, Nothing says you have to use your insurance. If you can get the script for O2 call your local medical supply company and see what the 'E' tanks cost. Then call a welding supply company and compare rates. (Make sure you compare like cubic foot tanks, as each use a different type of tank) Jeff

CHFather, you're a good man! You beat me to the post. Always glad to read your posts! Jeff

Laura Ann, I'm completely right there with you on your feelings for the Dr's and Insurance Companies. Venting here is fine, you're in good company! I've no doubt that many on the site have been in your shoes as well. Your best bet might be to print out the following two articles and fax or send them to your oppressors. “High-Flow Oxygen for Treatment of Cluster Headache” Journal of the American Medical Association http://jama.ama-assn.org/content/302/22/2451.full “Inhaled Oxygen and Cluster Headache Sufferers in the United States: Use, Efficacy and Economics: Results from the United States Cluster Headache Survey” http://www.docstoc.com/docs/62904898/US-Cluster-Headache-Oxygen-Survey-Early-Vie... Good luck and wishing you PF times ahead! Jeff