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CHfather

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Posts posted by CHfather

  1. Glad you had a doc who made sound CH prescriptions (from a conventional-meds perspective), including oxygen.  All that Jeebs says is accurate, and of course you never really know what kinds of side effects you're going to experience, but it seems certain there will be some with those three meds (verap, trex, and pred) in your system.  Some people have very severe reactions to steroids (the prednisone), but most people don't (of course, if you do, you'll know it).

    If you're going to continue with the D3 regimen (which I hope you will), note the interaction with verap.  This is what Batch wrote about that:  >>If you are presently taking verapamil as a cluster headache preventative or for a heart condition, studies have shown that after repetitive dosing with verapamil, its serum half-life can be in a range from 4.5 to 12 hours.  Other studies indicated calcium supplements interfere with calcium channel blockers like verapamil.  Calcium gluconate is also used to treat reactions to oral verapamil.  Accordingly, in order to minimize a possible interaction with calcium that may limit verapamil effectiveness, separate the verapamil and calcium doses by at least 8 to 12 hours.  Discus this regimen with your PCP, neurologist, or cardiologist in order to work out an optimum dosing schedule.<<

    Get that O2 ASAP, and (as we've said) seriously consider the mask made specifically for folks with CH ( '>http://www.clusterheadaches.com/khxc

    ).  If you're not getting quick aborts with 15 lpm and the mask, step up to a higher flow (you can usually order a higher-flow regulator from eBay, among many other places -- you just have to be sure it fits with your tank(s)).

    I really hope that those meds get you some serious relief.  I do have to say that just thinking about them reminds me of a belief that is strongly held here, which is that if busting substances were legal doctors would have to be crazy to prescribe anything else.

    Big PF wishes!

  2. I have been using Amp energy drinks but will definitely be looking at labels now. 
      I haven't checked any of these for taurine, which many folks think is an important addition to the caffeine, but the 147 mg of caffeine in 16 ounces of Amp is not bad.  A typical 16 oz Monster will have a little more, about 160 mg.  Some people find 16 ounces a lot to chug.  Jeebs has favored the energy shot (2 oz.) called 6 Hour Power, which has 125 mg of caffeine, and some folks go straight to the Monster Hitman Sniper, which has 240 ounces of caffeine in its 3 ounces!  (We've had some discussions about the safety on energy drinks here, so I guess I should say something about using with a little caution.)
  3. U'bird.  Just four thoughts. (1) There are energy drinks and energy drinks.  Glad you're sometimes getting good results with what you're using.  Some have more caffeine and taurine than others, and for some people the higher-caff ones have more consistently good results. Monster makes some high-powered ones, as I recall. You might check some labels and see if you can step up, if you want to.  (2) You're probably hoping now that your doc will prescribe O2 on Friday.  We have found a shockingly large number of neuros who don't, or even won't, prescribe it.  It might be good to go to your appointment prepared with a printout of the JAMA article on O2.  You can find a link to that in the CB Oxygen Page under the black and white MENU tab on the left side of this page.  (3) There's a list of docs recommended by people with CH here: https://clusterbusters.org/?page_id=455. The Colorado list is pretty short.  These of course aren't the only good docs, but if you don't like yours, maybe there's an alternative there.  (4) Are you doing any of the heavy D3 loading that Batch recommends for those who are just starting? (I guess what I'm asking here is whether you're working from the latest guidance provided by Batch, which is at the link I provided up above.)

    PF wishes!

  4. U'bird, I hope your Friday appointment turns out to be valuable.  There are, of course, plenty of things conventional medicine can throw at cluster headaches, and sometimes some of them work.  That would bevery  good.

    In the meantime . . . In you first post you said you were going to be getting O2 last week.  Did that happen?  Have you taken steps to upgrade a basic O2 system--O2ptimask, higher-lpm regulator?  Have you started the D3, or maybe licorice root, or tried the energy drinks that were suggested above?

    And, given Denny's comments about testing, have you considered buying some seeds -- legal to purchase, legal to possess -- to be ready to try busting if you decide to (or finding other substances)?

    Hoping that whatever a doc might prescribe on Friday will help, but also suggesting that there are other things you can be doing that might serve you well in addition to that.

  5. 500 seeds sound about right for 1st time try? If half are floaters that should give me enough for 4 or 5 tries.Am I looking at this correctly?
        I realize you're just being conservative, but if half are floaters, you should demand your money back.  20 percent, tops, should be floaters.  As an alternative to ordering 500, you could get 250, see what the floater rate is, how they're working for you, and what dosage you settle at, and then order more if you need them.  If you have enough from the 250 for two or three doses (which I suspect you will), you have plenty of time after your first dose to get more shipped to you (though tranceplants' shipping can be darn slow if you don't pay for something expedited).  You can also switch suppliers for the second order if the seeds in the first batch don't seem right to you.

    you can start with a low dose
    From our experience, I would say that 25-35 would be considered a "low dose" -- almost certain not to cause any psychedelic effects, but maybe/probably enough to have some effect on your CH.  I would say that we have learned that even 50-60 seeds have no, or virtually no (maybe a slight "2-beer buzz"), psychedelic effect for 99% of people.  You'll have to judge where you want to start, but it would be a shame to be so cautious on your first attempt that you don't get enough LSA.
  6. You know you hear about junkies and potheads being some of the most brilliant people when it comes to getting their High, or new and better ways to achieve what they are after. It's kind of like that with cluster heads as well, except we are after a normal, pain free day. 
    For one adventure along the lines of what you're talking about here, you might want to keep your eyes on (and your fingers crossed for) this thread: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1391355305
  7. Welcome, U'bird!

    I can't tell you with full assurance about the tests either.  The general thing we hear here is that standard testing won't catch these substances.  Someone else will tell you something much more definitive.

    A few things you might consider:

    The "vitamin D3" protocol that has helped a whole lot of people: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804  Inexpensive, probably good for you, and often very effective.

    Licorice root protocol, which some people swear by: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

    Top-quality oxygen setup.  This would include a high-flow regulator and the mask specifically designed for CH.  People get faster aborts with this kind of setup.  You can read more in general at the CB Oxygen Page, which is under the black and white MENU tab on the left side of the page here.  You can order the mask here: http://www.clusterheadaches.com/khxc

    In case you don't know this one -- an "energy drink" (Monster, RedBull, etc.) or "energy shot" (5-Hour Energy, 6 Hour Power, etc.) drunk at the first sign of an attack can significantly reduce the severity of an attack or even sometimes abort them.  Good if you're stuck without your O2, or in combination with O2.  Some people get similar results with a strong cup of coffee, but many find the energy drinks more effective.

  8. At first I misunderstood TO's question, but I think he's asking where it is if a person goes to the CB website and not the message board.  He's right, I think, that it's very hard to discern from the website what "busting" is about.  I understand, and I know Tony does too, the rationale for that, but what he's saying -- that unless someone comes to the message board and gets guided, or they happen to find the CB Files section, they're not going to understand much about about busting -- also seems valid to me. 

  9. Thanks for this app, Robert!  I will check it out.

    You might want to start on some possible preventive routines now.  The D3 one that I linked you to above is almost certainly worth starting.  And many people find that preventive busting can keep cycles away.

    Note that oxygen is the medical standard for aborting CH attacks.  Any capable neurologist should prescribe that.  It would be good for you to have it set up in advance, and be comfortable using it.  If your current neurologist will not prescribe it (for who-knows-what reason), either get a different/better neurologist (generally, they're better at headache centers) or try to persuade your current one with the peer-reviewed materials in the oxygen page under the MENU tab at the left side of the page here.  You will be thrilled by the difference it makes to have O2 on your side. I'd recommend ordering the O2ptimask, which makes oxygen even more effective.  You can read about it, and see where to order it, at that oxygen page.

    You've gone way too many years with too little help for your CH.  I hope it's a long time before your next cycle, and that when/if it does come, this time you'll be better prepared.

  10. people like you are a good example of why I don't bother posting here.
      Well, if we stipulate that AO's response was a little rough, and we agree that Potter can sometimes be gruff (though I love AO and Potter is almost always right, gruff or not), I can't think of who the "people like you" are that you are referring to.  I'm here going on four years now, and I've read every single post during that time, and I can remember maybe two or three times when someone was seriously out of line.  I completely agree with Leslie:

    I am so impressed with this group that never stops amazing me with their knowledge and passion.
     

    And since it seems you have a lot to offer us, I also agree with her:

    This just makes me sad.

    I hope you'll stick around.

  11. t2b, I hope you are following up on DrTy's recommendations, including his offer to look at your case history.   

    If you don't actually have CH, there's not much point in pursuing CH remedies, though I hear you saying you're willing to try almost anything that might help.

    However, if you want to keep trying the D3 in a way that is consistent with treating CH, you should look at this file: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804.  You will quickly see that you are not taking nearly as much D3 as the protocol recommends (neither is w7, but it seems to be working for him/her), and it appears that you probably are also not taking enough of the other recommended elements.  Again -- this might not help your head pain, but since you say it seems to be helping a little, maybe doing it "right" (from a CH perspective) might help a little more.  It would be good if you could get a blood test to determine what your current D level is.

    Wishing you the best -- and again urging you to follow up on what DrTy recommended.

  12. Robert, thank you for sharing this.  Imigram is inhalable sumatriptan.  Most people with CH get even better results with injectable sumatriptan, known as Imitrex in the US.

    If you do have cluster headaches, you really want to have oxygen.  You inhale it at the first sign of an attack.  It's important to get oxygen with a flow rate of at least 15 liters per minute and a non-rebreather mask.  Your doctor should prescribe that.  You can read more about that at the CB oxygen page, which you can find under the black and white MENU tab on the left side of the page.  Many people here would tell you that oxygen is the most important thing you can have.

    There are many, many other things you can do.  Some are relatively small, such as drinking an "energy drink" such as RedBull or Monster at the first sign of an attack.  Some are larger but relatively inexpensive, such as the "vitamin D3" protocol that you can read about here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804.   There are many other pharmaceutical medications used to treat CH.  And you should also consider the methods used by many people here, known as "busting."  You can read more about that here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865.  If you have questions or further observations, please visit us again.

  13. Hello Oren,

    Many people here have had success using truffles.  I hope one or more of them will be here soon to tell you what they know.  If not, we'll try to go back in the files and see what there is there.

    After detoxing, you will want to try at least three times before you give up.  Some people get results sooner, and for some it could take longer. 

    There is at least one person here who gets very good relief from her migraines, as well as from her cluster attacks, from using psilocybin.

    (In case it isn't clear, I think Potter is suggesting that if you do not have oxygen to treat your headaches, you should get it.  In addition to the link he gave you, you can read the ClusterBusters oxygen file under the black and white menu tab on the left side of the page.)

  14. Many people (not all, of course -- there doesn't seem to be any "all" when it comes to CH) find that they get a good night's sleep for the first time when they start with RC.

    Have you tried melatonin at night -- some people get some good prevention results, and some better sleep, from that.  The standard advice is to start at maybe 9-12 mg and then work up.  At least one person here gets into the 20-plus mg range during a cycle.  (I know of one person who uses a lot less, taking chewable melatonin that comes in small (.5 mg) tablets.)

    A lot of people experience severe aftereffects from the anesthetics used in dental work.  Late for you to learn that now, but it might help explain what's going on at this moment.  (Might even be the effects of that, not the meds, that are making things worse for you.)

    RC ---- makes sense.  You'll have to be off opiates and other meds (not verapamil, probably) for five days before you start.  People seem to find www.tranceplants.net (which is in Montreal) and www.iamshaman.com (in the midwestern US) to be reliable sources for RC.   You'll probably want to buy at least 250 seeds.  They are, of course, legal to buy and possess but not legal to process for LSA and consume.  The method for processing is very simple: grind/soak/drink.  When/if you get to that stage, get back to us.

    Have you tried energy drinks?  Drunk at the the first sign of an attack, they can reduce the severity of the attack, and sometimes even abort it.  (They don't seem to add to sleeplessness, for some reason.)

    It also might be time to revisit your O2 setup.  Higher flow, O2ptimask, and other things can return some effectiveness that you seem to be losing.  You might look at the CB oxygen page under the black and white MENU tab on the left side of the page.

  15. I received the following today by email.  I am assuming that it's legitimate since the link takes to me a government website to provide my comment.  Maybe a little further investigation of the specifics would be warranted, or maybe you want to act now.

    Dear friends of the Alliance for Headache Disorders Advocacy,

    People with severe and disabling headache disorders urgently need your help.

    Migraine is the 7th leading cause of all disability. Yet, the US Social Security Administration does not list headache disorders as disabilities in their Blue Book –  the official list of criteria for how to qualify for Social Security benefits. Consequently, people disabled by headache disorders struggle unfairly to prove their legitimate disabilities. This situation is baffling, baseless, and grossly unjust.

    The Social Security Administration has recently been revising the neurological disorders Blue Book listings for the first time since 1985. Accordingly, the AHDA and certain members of Congress proposed that they finally add a headache disorders listing.  Unfortunately and without explanation, they have just refused to do, perpetuating a huge mistake.

    But there is still a brief window of time until April 28, 2014 for you to tell the Social Security Administration to change course.

    Write Social Security today supporting inclusion of a headache disorders listing for fair determination of Social Security benefits for Americans truly disabled by headache disorders.

    Please submit your comment to them here:  http://1.usa.gov/1gQS89a.

    Once you submit your comment, you will be issued a confirmation tracking number, though it may take up to a week for your comment to appear on-line. Please donÂ’t submit the same comment multiple times.

    Also, please forward this email immediately to everyone you know that cares about someone disabled by migraine, cluster headache, concussion headache, or other headache disorders.

    Thank you very much,

    William B. Young, MD, FAHS

    President, Alliance for Headache Disorders Advocacy

  16. Maybe others are curious about this, too, although I realize it's probably a question for the board's moderators/admins.

    I notice that every day there are more than a hundred visitors to the board.  Do we know whether there's any kind of pattern to their activity?  I'm just wondering whether there's any way we could be sure that we're making it as easy as possible for them to get what they are looking for.  Do we know whether it's mostly the same people coming back, or is it mostly new visitors every day? (I figure maybe IP addresses would tell something about that(???).)

    Just asking primarily out of curiosity, and partly from a desire to be sure they're as likely as possible to find what they need.  I have no idea what kinds of analytics are available/in use for this board.  If there's any kind of useful analysis that could be done but for which "manpower" is lacking to conduct it, I'd be happy to volunteer.

  17. We got ours on eBay.  It was used, so buying it was a gamble, but it worked well.  I see there seem to be some new ones on sale at eBay now.  For example, http://www.ebay.com/itm/Life-Support-Products-Demand-Valve-NEW-L063-050-/141096734246?pt=LH_DefaultDomain_0&hash=item20da054e26   Not cheap, but considerably less than the one at boundtree . . . and no script/provider required.

    Hope you're doing okay, 1i.  Think of you often.

  18. I ate tons of basil since I was a child, and I still eat it even fresh in significant quantities
      Nothing's as good as a fresh caprese salad, if you ask me!

    It's not basil that cures CH! 
    Well, then we've eliminated one element from the test -- assuming that the root or stick or whatever part is in mamajuana, when treated with alcohol, has the same effect as the untreated leaves you're typically eating (an assumption I'm not willing to make and am unable to evaluate).

    If we assume that Ayurvedic and other medicine traditions might know something that we don't (and what buster could assume otherwise?), then we have to pay attention, if we would want to pursue this with true discipline.  Here's what one site says about basil:

    >>Often referred to as holy basil, Tulsi [basil] is a potent herb that has been used in India for thousands of years to treat colds, coughs, and flu. According to Ayurveda, tulsi promotes purity and lightness in the body, cleansing the respiratory tract of toxins and relieving digestive gas and bloating. Tulsi leaves offer a rich source of essential oil, containing eugenol, nerol, camphor, and a variety of terpenes and flavonoids. The oil is a strong antiseptic against many kinds of disease-causing organisms, including bacteria, fungi, and parasites.<<

    it's an alcoholic extract
      Do we actually even know this for sure?  It's sold in alcohol, but maybe that's just because people prefer drinking funny-tasting alcohol as opposed to weird-tasting water.  I got no chemistry knowledge to help me here, and of course I know that the licorice root and many homeopathic items are alcohol extracts . . . just wondering whether other mediums (like water, or boiling water, or Pepsi-Cola) might also work for extraction.
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