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Showing content with the highest reputation on 03/01/2022 in all areas

  1. 3 points
  2. No need for the kitchen-sink approach, agreed. But as jon' said, at least you should have oxygen, which is not going to cause "further issues." And done properly the D3 regimen has no associated issues, or virtually never has any (and those are stopped if you stop the D3). Do you drink coffee? It helps stop attacks.
    3 points
  3. OXYGEN....OXYGEN.....OXYGEN!!!! allowed me ...with an energy drink starter and D3 regimen on-board near complete reprieve.....with a Zomig NS in reserve and very rarely used but damn glad to have...... .....have always thought clusterheads have an elite ability along those lines...forget what's gone...we are sorta like Tiger the next hole after a bogey, Goose Gossage with bases jammed after a third strike the ump missed...or Adam Vinatieri from 49 in OT after missing the previous kick....
    3 points
  4. Hey Ajax! I would definitely try some caffeine once or twice at the first sign of a hit. I think that you might be surprised at the result. I use just regular coffee as the energy drinks do not agree with me. You might want to start the D3 Regimen. Here is the most basic form of it: https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Get your bloodwork done or obtain a copy of your last blood panel. You want your D3 level to be at or above about 80ng/ml. Many of us use welding O2 and just buy the O2 from the local supplier for the welders. Don't say it is for you to breathe. Get that with a Cluster Mask and you can set up a great system for aborting your hits. The key is the mask and a regulator that goes high enough for your needs. If you try a medical O2 supplier, they will want a script!!!! The welding supplier will not. For rinse and repeat nights, you might find it easier to rest in a recliner. Lean back, but keep your head above your heart. I use a pile of pillows for support. Many chronics use the recliner as their bed. It seems to mitigate some hits and does help you wake faster with a fresh hit so that you can treat it quickly and kill if more easily. I prefer to sit up for hours pain free over waking in 15 minutes with a hit from being prone. And after the first night or two, I can sleep in the chair pretty easily, not as refreshing perhaps, but much better than all night hit after hit. They will roll back to my standard 4 per night if I use the recliner, otherwise I get hit within 15 minutes of lying back down and falling asleep. Inhaling cold air helps a lot of people. Go outside or turn on the ac in the car and stick your nose up to the vent of blasting cold air. It can help a lot for some. I used very hot water in the tub. Shallow to start. Sit down and put a cool washcloth on my head. Add to the water to keep it roaring hot. This would shorten a hit dramatically for me. Thirty or forty minutes vs just over two hours. Some will put an ice cube in their mouth and hold it against the soft palate on their CH side to attain relief. With all of these abortives, the next hit is still going to come. Using a chair and the D3 are the two things I mentioned that will actually help to stop the coming hits. D3 can prevent a cycle too. ATB!
    1 point
  5. Bosco, I get a huge 'cluster knot' where my noggin joins my neck on my CH side that is very painful. It cannot be massaged out either. If it pops up, hell is outside the door and coming in soon. Then I have to sleep on the side of the pillow - as in stand it up like a wall and put the edge carefully on that 'It don't hurt here!!' spot to sleep in the bed. Once the cycle is in full swing, I give up the bed for the Barca Lounger! Not to worry though, you are still 'special'!!!
    1 point
  6. yeah i get that. that's why i always panick when my neck hurts, thinking a cycle is about to start. fuck this disease!
    1 point
  7. Really hope it's a short lived visit from the beast (bunny)for you both .fingers crossed
    1 point
  8. Classic!!!!! I've never had the delight to experience lock neck or broken neck ,but I do get really bad stiff neck just b4 cycle starts with the shadows
    1 point
  9. Good to know im not crazy and sorry about your cycle coming.. it all sucks ass but we will survive... you and me both!
    1 point
  10. You might try it once. Many/most people find that even a 5-Hour Energy (much stronger than a cup of coffee) doesn't keep them up. If you are in the US (or one of many other countries), suppliers of medical O2 won't provide it without a prescription. There are also some that won't provide it even if you do have a prescription, if you want to pay separately from insurance (or you don't have insurance). And lately we've been hearing about suppliers "rationing" O2, even for people with prescriptions, because of COVID-related shortages. Of course, if you don't have a prescription, you can always get welding O2, which is used by a significant percentage of people with CH.
    1 point
  11. I used to get broke neck on occasion (around our house we like to refer to it as the "Lock Neck Monster"), but I never thought to track whether it would precede a cycle. I do seem to recall a lot contributors here being a real pain in the neck reporting some serious neck pain, and I believe @Dallas Denny is one of them. "Cluster bunny"? Some genuinely classic gallows humor there! I hope you don't mind if I start using that - you should probably trademark it and require a royalty payment whenever it is mentioned.
    1 point
  12. Don't do wind chimes either and thank you bud!
    1 point
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