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SHG

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  1. SHG

    This helped me- hopefully will help others

    Guys, I think there are some important things that needs to be said here. First, histamine IS a trigger for CH, and in many cases foods high in histamine also contain other triggering agents. This includes all aged, preserved, smoked, cured, pickled and fermented foods and drinks, that are also rich in tyramine. Of course, this does not necessarily mean that a law histamine diet will make a noticeable change for many, but some may benefit. It won't help too many people because (a) histamine is only one common trigger out of many and (b) food is hardly the only source of histamine. Histamine is not only consumed but mostly manufactured in the body, especially during CH attacks. Benadryl is beneficial for some people as a short-term preventative, because it inhibits H1 receptors in the brain. It's also useful to prevent Vitamin D depletion due to allergic reaction, which is crucial for the D3 regimen in some people. So, not a cure and not for everybody, but Benadryl and low histamine diet may help some people.
  2. SHG

    This helped me- hopefully will help others

    I'm a member since 2013 but I was a silent member who rarely came and never commented until very recently.
  3. SHG

    This helped me- hopefully will help others

    @ClusterSwarm, don't take it too personally. You don't know what other people went through, what they tried and how much snake oil they been fed over the years. It's only natural that people are touchy about the language used to describe their condition and treatment prospects. There's a huge difference between saying "it works" and "it works for me". I'm also new here, but I', a "Veteran" at clusterheadaches.com, and flaming of newbies with revelations is as old sport. Take care.
  4. SHG

    This helped me- hopefully will help others

    I've managed to prevent most of my nocturnal attacks with either Amitriptyline (25mg), Melatonin (2-7mg), oral Imitrex (25-50mg) or combinations of them. I used to have episodes of 8-15 weeks with 1-3 hit every night, for years. That's on top going on and off of being chronic in the past 20 years, and episodes that included 3-6 hits around the clock. As for O2 - in some point I followed Batche's advice and tried hyperventilating with 25lpm. Later, I realized lower flow rates (10-12lpm) also work for me, as long as I'm lying in a certain way, breathing in a certain pace, leaving the oxygen in my lungs for a few seconds every time and clearing my mind. I know, it sounds like something Potter would make fun off...
  5. SHG

    This helped me- hopefully will help others

    @Freud any surprises with other abortives / prophylactics?
  6. SHG

    This helped me- hopefully will help others

    To be fair - many treatment options are only researched after there's anecdotal report of a surprising recovery. I think if ClusterSwarm had come here and told his story, with less interpretation and a better title, it could have lead to an actual conversion.
  7. SHG

    This helped me- hopefully will help others

    You are a rare individual @Freud. Although, it has to be said - coffee is probably much more effective if you don't drink it very often. For it's too hypothetical of course...
  8. SHG

    This helped me- hopefully will help others

    Which of the two doesn't - caffeine or energy drinks? Some effect or no effect?
  9. I don't. Of course I'm using Oxygen and Imitrex. But when I used Oxygen alone I usually needed 10-15 minutes of 15lpm to abort an attack. Now it's usually 2-5min of 10lpm. When I'm far from my O2 tank (or forget to replace it in time) I always have Imitrex on me, and it usually works fine. But even the mighty Imitrex works better if you do a simple thing like putting pressure on your eye orbit, or gently pressure the maxilla area of the face (which inhibit parasympathetic activity to some degree). Or put a popsicle (because there's no ice pack in sight) on the base of your scull (just where they give you the GON shots to the greater occipital nerve).
  10. Semantics are important. It makes a difference when you call CH a disorder instead of a disease, and it make huge difference if you think in terms of causes and cures instead of triggers and treatments. As for special abortive methods and Technics - I have quite a few of them myself. I had CH for over 20 years before I was properly diagnosed (in some point I already knew, but doctors had proved themselves so useless that I didn't even try to seek help with them). So I had a lot of time to come up with all kinds of methods, many of which I'm sure all veterans here already know. I also learned a lot about triggers, and managed to be PF for several years - but this always comes to an end sooner or later. From my experience, most methods lose effectiveness with time. This can be explained in several ways, but it's a fact that many clusterheads report "cures" which do work for some time and than just don't. Other methods remain useful, but aren't enough when the CH gets worse, which it usually does. Personally, I always try a few tricks before reaching for the Imitrex shot, and I abort over 90% of my attacks in 2-5 minutes. But in the long run, it's a good idea to concentrate more on prevention, and keep the abortives for breakthrough-attacks. It's best to realize that BEFORE you get to a point where you have 30-40 hits a week.
  11. SHG

    This helped me- hopefully will help others

    Benadryl is a chemical too. Triptamines - including LSD, imitrex, melatonin and serotonin - are all chemicals. And hey, I'm as thrilled about using medications as you are. But in some cases it's better than the alternatives. The important thing is that you found something that is working for you.
  12. SHG

    This helped me- hopefully will help others

    Tell me, wasn't that a doctor who diagnosed you? And if you don't trust doctors how come you trust the diagnosis?
  13. SHG

    This helped me- hopefully will help others

    ClusterSwarm, I'm a CH sufferer for 36 years now, during which I've done some reading. So let me save you a lot of time. (a) CH is not an allergy, histamine is not the cause for CH, and your body also produces histamine without being allergic. Histamine is not only a marker of allergy but also an inflammatory agent, just like CGRP, Substance P and other molecules involved in the mechanism behind CH. (b) If the doctors you went to did not know what to do with CH, they were clearly not headache specialists. Actually, if somebody gives you painkillers for CH, he certainly ISN'T a headache specialist. First line for CH is Highflow O2 and Imitrex as abortives; Verapamil as prophylactic; and a steroid taper as transitional therapy. Pain killers are a waste of time.
  14. SHG

    This helped me- hopefully will help others

    Benadryl (Diphenhydramine) is far more that just an anti-histamine. It also binds to some serotonin, dopamine and adrenaline receptors, all of which are connected to CH. For some people, an allergic reaction might trigger a attacks, for several reasons. So, antihistamines might be somewhat beneficial, but only as an addition to a more proper treatment.
  15. SHG

    This helped me- hopefully will help others

    If it was all about histamine than anti-histamines would have helped. It's interesting to point, though, that some histamine rich food (such as fermented and cured foods) are also rich in tyramine, which is a suspected trigger for migraines and CH.
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