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RoseCampbell

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RoseCampbell last won the day on November 2 2019

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  1. I can understand how a mind numbing job would eat away and be more stressful. With frequent (chronic?) pain, one must have something to occupy one's mind with to keep pushing through. Otherwise, mush. Nausea is rotten. So sorry! Try tempting yourself with a little something sweet. Sometimes, that his enough to make it possible to get down a decent meal. Then be sure to rest for at least 1-2 hours to keep it down. Have you heard of ketones? If you don't get in enough protein and carbohydrates, your body starts to eat reserves, then, it spills ketones. It make you feel extra flu-ish.
  2. I'm so sorry for all you are going through. Throwing this out there just in case: Have you heard of POTS? Some of the symptoms (nausea, low BP, intense head ache) you describe make me wonder if perhaps it is something you're experiencing. If you want info on the "poor man's tilt table" test, please let me know. A positive response to the poor man's is a pretty good indicator of having POTS.Or, you can Google it. It is easy to do on your own. Best wishes. I'm sorry you are suffering. I hope some relief finds its way to you soon.
  3. I get the same thing during cluster times. My clusters also started way, way, way before the arm shoulder neck thing. For me, the clusters are more the cause of the tension, not the result. Working those muscles would and does help reduce frequency from the Clusters specifically kicked off by muscle tension, but it isn't a flat out cure. I've been working on and with my muscles/muscle health for 15 years.
  4. Constant head pain + financial woes. It's a craptastic combo. Wishing the best for you, or at the least, less of the worst.
  5. Oops! Ignore that. Pasted into the wrong page.
  6. https://www.ncbi.nlm.nih.gov/pubmed/28857152
  7. What a horrendous year, I'm so sorry for all you and you're friend are going through. As a person with a disability from illness who knows how rare it is for people to stick around, I must say: YOU ARE AWESOME!! What a humongous blessing you must be to your dear friend. I'm sorry about your car! Boo! We traded in my convertible mustang for an old police car for very similar reasons. Very pretty car, to car painted with spray paint. I feel your pain. Migraines are hideously exhausting when they are daily like that. If your migraines are mostly one-sided; Have you tried a trial of
  8. Thank you, I appreciate it! & Thank you for sharing that! I hope it does end up being helpful.
  9. Oh! I also have lupus, sjogrens, POTS, Fibromyalgia, and many other tag-a long s, so I've kept my comments about my experiences limited to those I absolutely know are common for HC sufferers.
  10. He called the welding company to ask if they also did medical, or knew where else we could get medical oxygen. We'll probably go the welder's route. Or, since I can sort of get away with such a low flow rate, I may try a machine. First here with both? I'm surprised, although my Neuro did say I was "interesting" . I'd be happy to answer questions. You guys have been a huge help for me over the years. Both HC and CH are one sided, wrenching/stabbing sort of pain. CH has more intense blinding flashes of kill me now. HC is more relentless deep writhing ache. Both have autonomic involveme
  11. Thank you for all the information, Batch! Many of those I was doing, or tried, plenty I haven't yet tried. Thank you! I am such an idiot! I forgot that last month, I'd moved down to 5 to see how little I could get away with using--not because it was the only level I could handle with the higher levels making me vomit. Idiot that I am, I only remembered the vomiting and unsuccessful oxygen times, and entirely forgot that I'd set it so low just to see. Good grief...The times I'd vomited from using the 15 flow rate were times I was having HC (hemicrania continua) attacks at the same time as
  12. Thank you for the tips! Sorry for the jumbly post--my brain is mush from a HC flare. I do use caffeine and find it helps. I'll try the bigger bag idea, thank you for the link! I've been waiting to buy the clusterbuster mask that has the mouthpiece option. Thank you for sharing your experience, Dallas Denny, I'll move it higher up my priority list.
  13. Hello all, after 25+years of clusters (22 years after first diagnosed) with almost no medical help, I've finally found a great doctor who prescribed oxygen for my clusters. I'm set up with a non re-breather, 15L flow rate valve, and massive tank. My question is, I can't breathe fast enough for the 15 rate to do much more than blow in my face. I have learned to breathe slowly and go into a deep meditative state during attacks. When I tried to breathe faster, I just ended up with my head spinning and puking. I slowed the rate down to 5, at that, it fills the bag, then I breathe in the entire c
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