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spiny last won the day on February 19

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  1. I am, by nature, a very 'supportive' individual. In this instance, I support someone that I have known for over 10 years, lives in S.A., and went to this man for treatment. She could not use her lower jaw for about 6 months after and ate everything through a straw. So, that is not a good promotion for his work or work ethics. With her experience added to yours we have a success rate of 50%. In addition, you still get them on one side, just not both. With that rate of success, I would not let anyone near me apply his method to my head! Please point me to the proper source for the statement above. I had no idea the 'cause' had been found!
  2. Can you get her user name? I think that 'most' things that help should be applied here perhaps. I had a mysterious 10 year full remission two decades ago too, but those suckers happen on their own from what I can gather. I was chronic and they just stopped one night. But, I was not cured and when they returned they were all nocturnal and that was a first. So, yes, remission is possible, but don't count on a cure. You and Dr. Shevel have the same hairline, jawline and smile! Remarkable....... I am delighted for you being pain free currently! Enjoy it and may you never experience another cluster! And I definitely share your delight with your results. The word 'cure' is hard to swallow here and for good reason. ATB
  3. I'm in NC and it was covered last year. Lincare is the provider here and several offices knew of it when I called just to see how far the 'word' had traveled last year.
  4. I find that I am best off if I don't go down this mountain during the months that I normally have a cycle. I get hit on the return to thinner air - going home. Ig I have to go down, I hit the McDonald's for a large coffee and do fine most of the time. Denny, my area is ~ 3000-3500 above sea level.
  5. That is pretty positive! Has your break continued today too? You certainly need it!
  6. It helps me too xBoss. The refresh rate on my laptop is no longer an issue, due to an upgrade, but dark mode rocks!
  7. Thanks Bosco. I too got it downloaded. Batch, thanks for the update!
  8. Mizagorn, it would. Ball valves are super simple and easy to use. The first one that FunTimes linked is a great solution too and very cheap. I would check on the delivery time for it first though. Just from my experience with some companies. Number 2 is fine as long as you don't lubricate them at all. the barbs should come in clean of any oils or grease. Tape is only used on threads too. For any of these, you want to be careful and easy with them and not let them stress your tubing. Support them is what I would suggest. The tubing is very stout and strong, but don't leave the connection hanging with no support as over time, the set-up will degrade.
  9. Hi Mondo. No, I have never known of a CHer who benefited from taking it either. It is a vasodilator and generally, we don't want to open our blood vessels as it can put pressure on the Trigeminal Nerve that is involved in Clusters. On occasion, we may sit in a super hot shallow bath to open the blood vessels in our lower body to alleviate some of the pressure in our head. But that is very different from all over dilation.
  10. You might try electrical tape. Wrap it around the tubing snug a few times, then add your clamp. Also, is the clamp one with the slots along the length of the clamp? Has a screw on the side to tighten? It seems like tape would work. I have used this method, with that type of clamp on other stuff to my advantage. Not sure about soft tubing though. Good luck and let us know how it goes!
  11. Look at the shoes! I wonder what they were doing. Are you there Denny?
  12. Mit, in my experience, shadows and hits post surgery are due to the Epinephrine in the anesthesia. I have had a major issue with that twice in the last 20 years. Both times, it lengthened my cycle and once I woke from surgery with a massive hit. You always insist on No Epi! They can use other anesthesia that does not contain any. They don't really like it, but I have found that all of my doctors will comply with that request. I always talk to the anesthesiologist if he is doing the anesthesia too! Your doctor can forget to tell them. So, when it is an outpatient surgery or worse, I have to tell them what I need post op if I have a hit: a Bottle of O2 with a Non re-breather mask at 15LPM. The two hospitals that I have done this with were both very helpful and compliant. When I woke with a hit, my nurse handed me the mask and did not try to make me lie down. It was perfect. You might need to do a 'dose' for it now to prevent the cycle that is threatening you.
  13. That is a great solution to conserve O2. As you have seen, we all have our own but similar methods. Go with what works for you and for that hit.
  14. I was going to mention an IEP for these kids. If they present the school with a note from the doctor describing their specific needs, the school is obligated to supply them. I do know from personal experience, they will ignore the IEPś that are a pain for them. My youngest was gifted in reading and read at a 5th grade level in kindergarten. In first grade, they were to send her to her easel in the back of the room to work on her art skills. Nope. Teacher claimed it was disruptive. So, she was sent to read and TEACH the 5th graders how to read! That started her school career off very badly. Her classmates did not understand and treated her badly over it for the rest of grade school. My son was gifted verbally and suffered in math. They followed his IEP to the letter because he could charm you just by talking about something he was interested in for ten minutes, In addition, the schools gave him all the ´best' teachers, so she was not allowed to have them as teachers! She got whoever was further down on the capability list. Bottom line is that I agree with the purpose of the statement, but I don't have a lot of hope for it. I too would push for the adoption of this idea. I wonder if offering a kind ear to those parents and telling them to get a note and force the school to do an IEP for the child would produce better results? I think that it might. But getting the word out first could smooth that part along for many.
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