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  1. You know if : 1) Oxygen properly used never aborts 2) Imitrex, properly used never aborts 3) Steroids properly used never aborts It is highly probable you do not have cluster headaches
    2 points
  2. If you have a solid diagnosis I would advise finding a open minded decent family doc or internist. Develop your own treatment plan based on data found here and present it to him or her and have them support the plan. Such a plan should include D3 (listed in our archives), availability of home high flow O2 with non re breather mask, continued use of benadryl (with perhaps higher dose). You can decide for yourself regarding other things you need a physician to prescribe (verapamil, steroids, triptans) most of us here have tried prescription stuff and try to avoid because the efficacy is limited and side effects suck. Depending on your comfort level and severity of disease you may also explore alternative options. Bob's Big Book is an excellent resource to develop a personal plan. The main point is, your doc does not need to know much about clusters but must have the capacity to listen, be reasonable and willing to work your plan. In reality finding such a person should not be that hard, most docs do want to make a difference in peoples lives.
    2 points
  3. Hiya Ong, Sorry I can't be of more help than just to say: I hear you! Was episodic for 23 some yrs...6-8 weeks on/off...all yr long. Tho I battled depression in general ...oddly it was MUCH worse OUT of cycle. When in cycle I could focus and just deal with it...without being all pissed off and sad! I think because I had a plan....dunno. Never ceased to puzzle me. Eventually became chronic....and most of the depression went away.....retired and nearly all the rest went too....no more stress. I highly recommend it.................................... Best Jon
    2 points
  4. So, I'm doing some guessing here. Zembrace seems to be 3mg of sumatriptan in an autoinjector. The typically prescribed injection med for CH is Imitrex, which is also sumatriptan but comes in a 6mg injector. Then people often take apart the injector and give themselves either 2mg or 3mg injections. So I'm saying that one way to look at it is whether Imitrex would be cheaper for you if you got the injectors and then took them apart. I looked at www.goodrx.com, which is a discount program for pharmaceuticals, and the prices there for Zembrace seem astronomical. It's not like Imitrex is inexpensive . . . You can also have vials of sumatriptan and syringes prescribed and create your own doses. Again, I'm sorry that I just don't know what the cost of that would be. I would say that you could discuss these options with a pharmacist who could probably help you figure out what might be best. Finally, at zembrace.com there's some kind of discount card, but I couldn't make sense of what the deal is. With all that said . . . You really want to be aborting attacks as much as possible with something other than triptans (there's research and experience saying that triptans extend cycles and create rebound attacks). In particular, you want oxygen. You really, really want to have oxygen. And most folks here would strongly recommend that you try the vitamin D3 regimen that is described in the ClusterBuster Files section of this board. Finally, 480mg of verapamil can be a relatively low dose for people who are in cycle. Up to 960mg is acceptable according to the medical experts.
    1 point
  5. Every one who has migraines or cluster headaches had found a magic cure in the past. I 'm 100% sure of it. THE ONLY PROBLEM IS , THE "CURE" STOPS WORKING SHORTLY AFTER OUR DISCOVERY. There are many reasons why we find the "magic cure".. from a cycle ending , to pure coincidence,,, to remembering only the times when it works. My discovered magic cures over the past 10-12 years of suffering, that I genuinely wanted to believe and they worked from 1-3 times of repeat use then, It stopped. NOT MAGIC CURES , BUT WORKED 1-3 times in a row ONLY !!! 1.)M-grain essentil oil - on the temple and neck when the attack starts 2.) Drink 2 very cold- close to frozen redbulls at the start of the attack 3.)Cayenne pepper under the tounge at the start of the attack 4.) Feet in hot water for 10s ,,then icy water for 10s ,,repeat ,,,or one foot hot water other cold water... NONE OF THIS WORK ANYMORE WHAT IS STILL WORKING FROM ACCIDENTAL DISCOVERIES -Intense exercise at the first sign ---pull ups,,push -ups,,,,,intense meaning 60push ups in 1 min ,,,rest 1min ---30 pus-ups---rest 2 min 60push-ups,,,,etc,,,500-1000 in 30min - 1h, until the attack is aborted works for me about 30% of the time,,,,sometimes combined with O2 and energy drink. -home made food, makes cycle a bit shorter HERBAL MEDICINE IS FREAKING WASTE OF YOUR HOPES,TIME AND MONEY, EVEN IF A PERSON BELIEVES THAT IT REALLY WORKS. CLUSTER HEADACHES SUFFERERS ARE DESPERATE ,BUT NOT STUPID. WE RESEARCH AND RESEARCH AND RESEARCH AND RESEARCH , MAYBE THAT IS THE REASON WHY WE CAN'T BE FOOLED EASILY BY THIS NON-SENSE, BECAUSE WE HAVE TO KNOW ,,,WHY AND HOW IT WORKS. Trying to offer magic herbal medicine to cluster headache sufferer is about as difficult as trying to sell a perpetual motion device to a Phd physicist, even if it is " free."
    1 point
  6. No oxygen??? (You don't want to use meds, that's your business. But oxygen is so benign and effective.) Have you tried the D3 regimen (in the ClusterBuster Files section)? Please let us know how your taper goes. Good luck.
    1 point
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