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Clusterfukked last won the day on August 25 2017

Clusterfukked had the most liked content!

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    Tampa, FL
  • Interests
    Watching my boys grow up.

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  1. It occurs to me that I booked conference, car, plane tickets and even a concert that weekend but not hotel. Is there a link to book through the conference or some sort of a code or do we just bOok through Hilton directly ? I have looked but maybe I’m missing it. ?
  2. I’m glad you are feeling some relief but don’t let your guard down. Everyone reacts differently and maybe you found something for you and that’s awesome but I went full paleo for 5 years and it changed everything but my CH. I lost 100 lbs, skin cleared up, slept better (out of cycle), etc. when cycle was in, CH was there no matter what. That being said, being afflicted with CH is bad enough. Eating healthy may at least avoid other health risks. I hope you found something that works for you. Just be ready no matter what. Good luck.
  3. It’s understnadable. This freezing Florida temperature has everyone off kilter. I assume this was in response to the “use dark web” guy ?
  4. Hello fellas, any recs on breaking up the D3 regimen ? I generally feel like I need to vomit for hours after I take all of these pills. I’ve tried morning, night, before meal, after meal. It’s just a lot. I guess better than the alternative but is there any reason I should take some early and some late etc ?
  5. All the evidence I need is in my head ... or rather ISN'T anymore !! ... for now anyway. I do hope this is a step in the right direction. The thought of busting is scarier than the next attack to some people and that is if they can even acquire the medicine. Seeds may be the answer but even that is daunting for some folks. Seems we are programmed to look for the answer in an easy to swallow pill. That would be a dream but the cynic in me feels big pharma will find a way to make a cure tough. Anxious to read the study results
  6. Don't give up. Keep calling around for oxygen and have your doctors office call the most receptive oxygen supplier. If all else fails, get a welding tank. I was hesitant to bust but did and it has been amazing. Look into the seeds. Many of these things seem crazy to consider but desperate times call for desperate measures. I asked many doctors about "busting" and treatment alternatives and they all like to use the word "anecdotal" when describe the success rates. Until we get some serious funding and legal changes, everything result we have will be anecdotal but the fact remains, many people have had dramatic successful results. Stay strong. You will figure it out and it will get better. I was on the verge of the "ultimate solution" a few months ago. I was in tears daily. Folks here talked me off the cliff and I kept eating, learning and coping. Now I virtually pain free with minor occaisional hits and shadows. There is hope. Been your own best advocate but be sure you are 100% you are actually treating CH and that there is nothing else going on. Good luck.
  7. Does anyone know why the Triptans seem to extend the cycle and make the attacks worse at times ? I'm just curious as the injectors can be a godsend as I am on the road constantly and oxygen simply isn't an everyday option. I did a 3 dose bust and it has done wonders but I am still getting the occasional O2 abortable attack but when away from O2, I am left to suffer. I have not wanted to take the Sumatriptan shots just in case I luck upon some MM and can bust again. Just curious if anyone can explain the science behind why something that offers the relief make it worse. It's like Chinese food making you hungry again!!!
  8. I will watch for this as I am a constant sneezer due to allergies. I've never noticed any difference as well, I wasn't really looking for it. Thankfully I am currently PF after busting and I seem to b sneezing as usual but if I have the unfortunate opportunity to go back into cycle, I will see if the sneezing stops ( in between tears and begging Jesus and what not)
  9. For years (about 20) my CH presented itself almost exactly the same way year after year ... that is until this year. For whatever reason, the pain, although very dull, seemed to linger longer no after the peak of the attack. This beast has a mind of its own. I have noticed the sinus crackle over the years but it would usually happen as my cluster was subsiding and the clogged / draining side would reduce pressure, so not sure if that is what you refer to. You may want to get a scan / MRI to rule out anything else if the difference seems to be that noticeable. Best of luck and may you see some relief soon.
  10. WP, as far as the nerve block goes, no noticeable change other than the back of my head hurt where the needles went in. Busting today. Day 1. High hopes.
  11. man, so glad you guys are here. A truly special group in a world full of fucktards.
  12. So just to be clear, it is simply a regulator and not a tank issue, correct ? if they supply the tank and I buy the regulator / humidifier then I should be good to go ?
  13. Need oxygen advice. My apologies if this information is on here many many times as I'm sure it is but I thought I would ask . So I finally got into a new neurologist today and got an occipital nerve block, Prednisone prescription, sumatriptan shots and FINALLY OXYGEN !! My problem is is we have called five places and nobody can supply the high flow oxygen. Dr. script was for 12 to 15 and no one will supply over 10 I'm in Tampa Florida and it was late in the day when I got the script and will continue calling tomorrow but has anybody come across this problem and is there an easy way to remedy it ? I assume this is a regulator issue? Can I just buy the regulator ? Is this just an insurance thing? They all keep saying that "they just can't supply that flow rate". I feel like finally getting into a neurologist and getting the prescription was such an accomplishment and now another roadblock . Any advice is much appreciated !
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