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Ok so one night I was in pain and didn’t know what to do with myself, so I threw myself in the shower and stood under the water hot or cold and let the water beat at the top of my spine and within 5 to 10 minutes the pain had completely disappeared, so I tried again next time and it worked and so on and so on and almost every time I feel a pain coming if I’m at home I’ll jump in the shower quickly and let the water beat at the top of my spine. it’s not a fix to get rid of them completely but it helps with the pain at that time, I get them everyday and night every few hours for an hour ish each time and has been going on for over 2 years so the relief from pain when I’m home is so good and I feel perfect afterwards. Please try this on your next attack and let me know if it works for you, I really hope it does, patiently waiting for someone to say it helps them too. xxx

This is surely a dumb question . . . Do you mean the very top of your spine, at the back of your head, or the place at your shoulders where your neck begins? I ask because as I was imagining what you describe, I was thinking top of shoulders, in part because I was picturing this as another way to deal with all the muscle tightness around that area that CH creates. Hot or cold just as good, eh? I won't be able to try it, either, but I'm hoping someone does. I'm sorry that I'm just coming to your threads (I was away for a while). It's an awful situation. I'm sorry. I'm not going to grill you about symptoms, but I do have to join with the others who have said it doesn't sound like CH, hardly at all (neither the symptoms you have mentioned nor the resistance to pharma nor even the diagnosis). Doesn't really sound like HC, either, but (again, you don't have to respond to this -- I'm sure you're tired of it) when you say in your other thread that you tried indomethacin, it is often true that indomethacin is not tried at high enough levels for long enough to really tell if it works. I would consider trying busting, as others have suggested, if only to see if it might help, and also the vitamin D3 regimen (https://clusterbusters.org/forums/topic/1308-d3-regimen/), which seems to help with many "headche" conditions, including CH. The Basic Busting Process 1. Take a psychedelic substance every five days until attacks are stopped. This is sometimes called “dosing.” Typically, it will take roughly three doses five days apart to stop attacks, but it could take more or it could take less. 2. The typical substances used are mushrooms containing psilocybin, LSD, or seeds that contain the ingredient LSA. All of those substances are typically effective at treating CH, but people may experience different results with different substances. Mushrooms - https://clusterbusters.org/forums/topic/683-4-the-psilocybin-mushroom/ LSA Seeds - https://clusterbusters.org/forums/topic/684-5-lsa-seeds-of-the-vine/ 3. The basic idea is to take enough of the substance to effectively treat CH but make any “trip” experience as tolerable as possible. Some substances have less, or different, “trip” effects than others (seeds typically have virtually no trip associated with taking them), and people have different “trip” tolerances. 4. The right frame of mind is important for dosing. The issues in this regard are often referred to as “set and setting.” 5. No medication or other substance that might block the effectiveness of busting should be used for at least five days before any dose of psychedelics. The most typical “blocker” in this regard is triptans, such as Imitrex or Zomig, but there are others. Blockers are discussed in this file [https://clusterbusters.org/forums/topic/687-6-playing-well-together/ 6. Dosing with psychedelics can cause what are called “slapbacks.” These are CH attacks that occur at different times than a person’s typical attacks, or are more severe, or both. Usually these occur on the first and second days after a dose. Not everyone gets them. 7. Many people bust to prevent future cycles (or a recurrence if they have chronic CH). That entails dosing at regular intervals when out of cycle. People use different dosing schedules for this, from once every couple of months to once every week or two; each person has to use trial and error to find the schedule that works best for them.