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TakinitEZ

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Everything posted by TakinitEZ

  1. I'm at 15lpm. 25lpm should do it unless your bag is going flat.
  2. Hey Jordan, What's the throughput of your regulator? You might need to up it. -T
  3. I think now with this info I can maybe drill a small hole, get in there with some lock picking kind of tools, and push the reset button. -T p.s. You do seem active BB! No shame in that.
  4. That is just a lovely, uplifting message Ting. It is especially meaningful to those of us just digging our way through the tunnel, day after day. I feel very lucky to have the benefit of your thoughts. -Chris
  5. They also purge the med 02 tanks, not the welders (at least they're spota).
  6. OK, what the heck's a "WHAT-WHAT"? Man I feel old sometimes. -T
  7. Hey Jilly, Welcome to clusterbusters. I'm near Philly too in Bucks County. There are a ton of good questions in your post, so I'll hit what I can and leave the rest for others. First of all, you need a new doc. Anyone who won't prescribe O2 for cluster isn't very knowledgeable about it, and one who says it's easy to treat is disillusioned. I go to the Jefferson Headache Center in Philly - they get it. The good thing is that he started you on Verapamil, which is considered the best preventative for CH (in pill form). The dosage you're on is actually pretty low for CH prevention. Most here, including me, take a much higher dose (at least 480, up to 720). A word of caution though is that Verap does slow your heart rate and drops your blood pressure. If you have BP/heart issues, watch out for Verap. Regarding disability, I think the answer is some. I'm on disability with chronic CH and vestibular issues. I certainly wouldn't recommend it unless you absolutely can't work. -Chris
  8. Bitter or not, I think the blog entry raises a good point. We do not have a significant public voice. I would say there is a maturity curve for publicly addressing an unmet need, and that we're low on that maturity curve. We could learn a lot from other causes that have progressed farther up the curve, like MS. -Chris
  9. Rock on man. Music soothes the soul. -T
  10. I think this is a worthy approach and I applaud your efforts. Attaining the source compound is the first significant hurdle and as you've indicated may best be approached ex-US. The other hurdle is that the Karst discovery may be not be considered statistically significant from a clinical study perspective and would require more safety and efficacy evaluation before a new drug application could be filed. That said, I think you are very much on the right path, engaging drug makers in dialog about a new medical solution with high a high probability of success. Perhaps an aid to the cause may be some metrics regarding the potential market that will make it a worthwhile endeavor, ie. patient population, possible doses over their lifetime, etc. I completely support you in this endeavor and will be glad to help as feasible. -Chris
  11. Hey, There are some fantastic music festivals and concerts on the Isle of Wight. Have you been? -Chris
  12. I don't doubt anything anyone here is saying, but I will say that Imigram/Imitrex is safe if taken according to the label instructions and it works. Wearing out over time, extending cycles, could very well be true, but in the short term, use it and get your son some relief. -Chris
  13. I'd join in this discussion but I don't want to catch the flu. -T
  14. I try to stay away from the Red Bull at night, but I'm an old guy who just can't sleep well with too much caffeine. Be careful about messing up sleep cycles as much as is possible... can also be a trigger. The O2 should do the trick alone if at least 15lpm with a good mask. -T
  15. WOW! This is an excellent summary of relevant research. I happen to have both chronic CH and chronic migraine along with vestibular issues (dizziness and vertigo). I've been led to believe this is rare, but according to a study cited here, it's not uncommon at all. I found several abstracts here that I've been seeking to learn more about. Very happy this research is happening. Thanks for posting! -T
  16. Hey Jordan, that's just what I'm trying to do. Chill a bit and not think about that next battle until it's go time. Rested, ready, and armed to the teeth. Come on CH, you're going down... -Chris
  17. Love it. My guess is we've all done our share of what we know isn't best for us. I don't know why I do it, I just do, and it's my choice when I do and I pay the consequences. -Chris
  18. Hey Flipperlips, Sorry to hear about Phil. That has to be miserable! Give him my best. Joe, hope you're not dealing with the Flu right now. Did you get a shot? Jeez Ting, sounds like I'm the oddball out, and really lucky so far. I hope I didn't jinx myself! -Chris
  19. I stay away from alcohol altogether. Before I was certain I needed to, I found that beer was the worst, then red wine, then the rest. I've even had the smell of my wife's red wine trigger me. For me, drinking is not just a trigger, it can give me a couple of bad days. After a while, I don't really miss it. -Chris
  20. I don't know if it's just me, but I can't recall having a cold or other minor sickness for at least the past year and a half. I'm chronic and have plenty else to think about, but I find it interesting that I haven't been sick at all. I'm sure the CH trumps "not feeling well" but I'm surprised I haven't even had a small cold. Am I alone on this? -Chris
  21. Hey K-Bo, I have shadows most of the time... really sucks because it's kind of "in between" basic relief approaches for a kip 2-3, like caffeine or Excedrin, and the more serious abortives you might reserve for a k6+. My shadows mostly run 2-4 but can creep right up to 5-6. Oxygen doesn't really help me much with these. The best solution I've found is to get outside and do something active, as much as I can. I usually drink a Red Bull along with that. Sometimes it works, sometimes it doesn't, and sometimes I resort to an Imitrex injection if it has gone on too long. -Chris
  22. Well ya, but I'm not putting you in that category Dan. ;D
  23. Yes, they clearly fit with CH diagnosis, and I've been diagnosed by both the Jefferson Headache Center and the Cleveland Clinic. I do have side issues though that are troublesome, including vertigo, severe dizziness, and numbness in my right hand. It's likely that I have multiple issues, but they all came at about the same time. I've had traction therapy and it has helped with the numbness, so the problem with my neck is likely the culprit there. BTW, I bought a CPAP off craigslist from someone who had used it once and couldn't stand it. I used it for a while and it didn't change a thing. I realize there are settings appropriate to each person, but it was a good trial and only cost me $150. -Chris
  24. Dan, I'm not overly hopeful. I've been through enough loops now to take it one day at a time. You know it's funny you say that you feel pf after surgeries, and that they always want to sell a surgery. I've found the exact same thing. I had septoplasty for deviated septum before I was sure I had CH, felt great for a week, then bam. I have a lot of ringing in my pain side ear, dizziness and vertigo, so the same ENT suggest "exploratory" surgery on my inner ear. I talked to another ENT, he said forget that. I also went for a sleep study and it came up mild apnea. The doc tells me he wants to do it over again, but this time sleep on your back so we can get a solid result for insurance. Told me about simple surgical procedures to correct apnea. Considering I never sleep on my back, I never went back. -Chris
  25. I'm not sure what the analgesic gas is that they provide to mothers giving birth. Do you? Generally, you want to stay away from narcotics and other habit forming medications. They may help reduce the pain a little, which can lead to higher doses and eventually to addiction. Drugs like Vicodin, Oxycodone, etc. can actually cause what are called rebound headaches, which can actually be worse than the original headache. It's a bad cycle to get into. -Chris
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