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  1. Past hour
  2. jon019

    oxygen

    WOW...I'm flabbergasted...been an O2 user since 1985 when I USED to hear this....what has happened!!?? ...I'd go welding O2 if I was you folks.....
  3. Mjedwards409

    oxygen

    When I called around trying to find O2 here in Atlanta for my wife, had 4 straight providers deny her service even when we had the prescription and I offered to pay out of pocket, pick it up, etc. Multiple providers said verbatim “we don’t service people with CH, prescription or not”. On the 5th try I finally had a manager agree to provide on the basis that I paid out of pocket and I picked up from their location. The prescription stated CH so I couldn’t really hide what it was for.
  4. jon019

    oxygen

    ...sorry...not quite following...who is saying you have to be a COPD type patient...that is ANCIENT ignorance I haven't seen recently? I used Lincare both ins and self pay with no problem once I educated them on CH (some mgrs, other already knew)...even used their travel service where I had E tanks delivered to a hotel room (no extra charge!...it was awesome)…..one office located in Lakeport...dunno how close that is to you...others farther away ….for problems with insurance company I got my HEADACHE SPECIALIST (critical component of your CH battle plan) to write a letter of necessity for O2 and triptans at various times...makes it tough for insurance to deny as then they are practicing medicine w/o a license and w/o having seen you....at other times got the HR Mgr of my company AND the insurance broker who sold the health insurance to my company to intervene...that last one worked wonderfully as you aren't the customer, they are and get an ear.... ...you GOTTA get O2...it will change your life....if this all gets too complicated go the welding O2 route...cheaper and easier...folks here can help with the details...
  5. Yesterday
  6. greg

    oxygen

    Providers are aware of CH. Must be ignorance of insurance co's since providers all say unless patient has a pulmonary such as COPD, insurance won't allow them to distribute. They won't give any other explanation. best, g
  7. jon019

    oxygen

    Hi Greg...can you tell us why they are denying service even with a script...is it ignorance of CH needs by insurance or O2 shop?
  8. greg

    oxygen

    Am on my 80th day of CH's. Last year was 49. Last year was able to get oxygen from local provider which shortened cycle and reduced length of attack. This year can't get any of three local providers to provide even with script and paying out of pocket. Anyone know of any other providers in northern ca zip 95486 or ideas on how to oxygen elswhere? best, g
  9. Batch

    Is there something about Australia?

    xBoss, Changing geographic regions to prevent CH is much too drastic... It may work, but it's a lot easier and far less costly to take 10,000 IU/day vitamin D3 for an 80% probability of success in controlling your CH. If you take the Bio-Tech D3-50 50,000 IU water soluble "micelized" vitamin D3 at 21 cents/capsule and take one (1) every 5 days for an average dose of 10,000 IU/day, the average daily cost of your vitamin D3 is 4 cents/day or ~ $15/year . Some CHers get by with one of these Bio-Tech D3-50 capsules a week, an average vitamin D3 dose of 7,000 IU/day for 3 cents/day or $11/year. The rest of the anti-inflammatory regimen cofactors and conutrients run around 45 cents/day. The entire clutch comes in around 50 cents a day or $183/year... About the cost of taking your wife out for a movie, dinner and drinks. This regimen makes good sense or good cents no matter how you look at it. And then there are all the wonderful health benefits with no adverse side effects... That's a no brainer... Take care, V/R, Batch
  10. Headblaster

    Hello - First timer

    Have not posted in while -- But great news for me so far. I started the D3 Regime about six weeks ago. I am taking 15K of D3 and the rest that Batch has listed. my 25-OH levels are below. Near the high end but not over the top. I have been completely pain free since the evening I started the regime. Thanks to all you busters out there!! VITAMIN D,25-OH,TOTAL,IA 05/14/2019 VITAMIN D,25-OH,TOTAL,IA 95 ng/mL (30-100 )
  11. xBoss

    Is there something about Australia?

    It's def. a good idea to change regions if you are chronic and at your wits end with CH. That is if you have the ability to change regions. My headaches changed as I moved around North America.
  12. Batch

    Shadows back from pizza

    The culprits are wheat products and carbs... Wheat products trigger allergic reactions and carbs blow you out of ketosis... In simple terms, "Eating's Cheating" while on a keto diet if you're snitching pizza.
  13. Hi jules sorry to hear your attacks are getting worse i highly recommend trying "Batchs" vitamin d3 regimen as a preventative. Id start by going to a doctor and getting your magnesium and D levels checked to see if you are low. The basic idea is to get your d levels up to 80 ng/ml and keeping it there. Also are you using sumatriptan shots, and what mg? I know there is also lidocain through the nose and some other preventable methods such as botox injections in the forehead. Im just curious as to why the oxygen isn't working. I remember someone saying their is a nerve disorder that can cause symptoms similar to CH. Since you responded so well to chiro it could be that. Preventables only help so much and the oxygen at 12lpm -25 should be able to abort an attack. Hopefully you were diagnosed properly wish you the best sir good luck!
  14. Batch

    Is there something about Australia?

    It's called air conditioning. Edited to Add: I had an interesting exchange with Dr. Cicero Coimbra, MD, PhD, on his high dose vitamin D3 protocol for his MS patients. The starting vitamin D3 dose is 1000 IU vitamin D3 per Kg body weight per day. At 80 Kg, I would be taking 80,000 IU/day vitamin D3 if I was on his treatment protocol. When I asked why so many people had MS in Sao Paulo, Brazil where the Latitude is -23.5º North, about the same distance South of the equator as Key West, FL is North of the equator, so they should be getting lots of cutaneous vitamin D3 from the sun, he replied "They all have the same problem." When I asked what problem was that? He replied, "Air conditioning."
  15. CHfather

    Shadows back from pizza

    Pizza-related things that have MSG: Some places/chains add it to the sauce; Italian sausage almost always has it (lots of it); pepperoni and other meats sometimes; anchovies (naturally-occurring MSG); parmesan (natural).
  16. Last week
  17. jon019

    Shadows back from pizza

    ...some of us sensitive to nitrates (pepperoni, sausage, Canadian bacon, bacon), mushrooms, tomatoes (high glutamic acid), added(?) MSG....didja add a diet drink to that?.....aspartame vasoactive too......
  18. Ajl

    Shadows back from pizza

    This is kind of interesting you mentioned this ! Lol I thought the same thing once
  19. Rod H

    From 75 kilograms to 88

    Don't let the beast win. Exercise is proven to help beat the depression to. Make a routine and set goals.
  20. jon019

    Is there something about Australia?

    ...I've wondered too...maybe it's just that Aussies speak their mind....
  21. Dana129

    From 75 kilograms to 88

    Well, I’m pretty shattered after weighing myself tonight. My CH period started jan 25 this year, and at that time I was 75 kilos, I’ve gained 13 kilos in less then 5 months, my cycle is done, ended feb 8th, but I’ve been dealing with shadows since then. When u finish having a cycle, and take a step back and look at how it’s affected you. It’s very confronting, I haven’t been this heavy since 2015, I had my first major weight loss before my first ever cycle back in 2016, 2017, I had my first ch, weight was probably one of the least of my concerns, I was able to maintain weight, but this cycle has really fucked my motivation to keep fit, now I’ve lost so much confidence in myself. All the insecurities I had when I was overweight which was a distant memory are now in the space of 5 months is back. 13 months of weight loss, dieting and intense exercise all undone in just 5 months...CH really has stolen my motivation to take care of myself physically
  22. Dana129

    Shadows back from pizza

    No, I’ve heard good things about it though with clusters, been doing research into it
  23. Mjedwards409

    Is there something about Australia?

    I’m my time floating around CH.com and joining here, it seems like there are a lot of Australian CH sufferers in proportion to some other nationalities. Am I imagining that or does anyone have any theories as to why that may be? My wife whom was just diagnosed is half Australian on her mother’s side so it was a curious observation.
  24. Mjedwards409

    Anxious Supporter (Husband) Here - Are my views on CH Skewed?

    Thanks so much all for the supportive yet honest words. I have to remind myself to take it one day at a time, for the sake of my wife. God I hope the find a cure for these bastards someday...
  25. Freud

    Shadows back from pizza

    You doing the Keto diet?
  26. Dana129

    Shadows back from pizza

    Well, after 5 days of no shadows, I treated myself to the love of my life, pizza....shadows are back again...knew that was gonna happen
  27. Hiya Mj...feels weird to quote myself...but I'd just say (almost) the same thing: https://clusterbusters.org/forums/topic/4983-episodic-to-chronic-advice/ Still true 15 yrs later....tho I'd say "manageable" is the proper word. The attitude part was learned the hard way.....and it was for survival. YMMV on how ya get there. I had a life, loved ones, a job, a career...and things to frigging do....and this CH shit was getting in the damn way and threatening to take all of that away. "Not gun happen...read my lips". I realized it wasn't gonna kill me, why should it disable me? My belief it starts with the attitude...and living between the hits....a plan comes with research and advises the right tools (one of 'em being right here)………...
  28. Brain on fire

    Australians beware

    People who can't work are forced to chose between healthcare & food, the nanny keeps the job.
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