CHfather
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Posts posted by CHfather
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Tom, I suspect the energy drinks/shots work better than coffee (for most people) in part because they generally have more caffeine than a cup of coffee. But since RedBull works for a lot of people and doesn't have more caffeine than a strong cup of coffee, we figure it also has something to do with the additional ingredients, particularly the taurine. (Someone here took coffee and powdered taurine and got good results.) But why the taurine helps -- if it is the taurine -- I don't know. I don't remember anyone offering a theory or explanation for that.
As for your O2, the suggestions we've made elsewhere -- O2ptimask and higher-flow regulator -- might reduce wear and tear on your carpet. An in-between step is to replace the bag on your current mask with a turkey roasting bag or a small unscented garbage bag. And here's something recommended by the doctor who first tested the effectiveness of O2 -- look down toward your feet as you're breathing the O2. Some folks have found that to help. And, after a deep inhale, hold the O2 in your lungs for a few more moments before you exhale. Hyperventilating helps, too. As we've suggested, check out the CB Oxygen page under the MENU tab on the left side of the page for more info.  If you get a welding regulator (since you mention in another post that you got your O2 at a welding supply place), you can set it at pretty much any "lpm" you need (it doesn't have an lpm setting, but it goes plenty high). With most welding regulators, you'll want an adapter for the tubing to your mask. The regulators they sell at Harbor Freight typically come with that adapter; most of the ones sold at welding supply places don't have it, but you can usually get one at a hardware store, or online, for about a buck.
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Lisa, might as well cover all the bases here -- What does he have for O2 tanks? Most people like to have a couple of big tanks ("M" tanks) at home and a couple of smaller, more portable ones (E tanks) for the car/work, etc.
Idaho, eh? Is that the same thing as Montana?  :-?Â
 We have a bunch of CH heroes in Montana.He/you two should get to this year's CB conference if you can. Nashville's a long trip for you -- but it's a great experience.
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Lisa,
Just a note that your doctor is not completely nuts: cyproheptadine has been prescribed for CH, and some people even found that it helped. At one CB conference some years back, a doctor from the Diamond Clinic, which has quite a few CH patients, described it as an effective preventive, and the Robbins Clinic also lists it as something to try, as does the New York Times. I am sure that Dr Ty is right in all that he says: that there are no formal studies; that it's another CH "hand-me-down" from migraine treatment; and (most importantly) that it might interfere with the triptans -- but it's not in itself a completely crazy thing to try. Since Tom's had CH for 20 years, maybe he's been through a lot of possible treatments? I hope maybe he'll consider what Jeebs says just above here, and also some of what I have suggested up above.
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No idea what this means, how/why it matters.
Altered white matter microstructural connectivity in cluster headaches: A longitudinal diffusion tensor imaging study; Chou K, Yang F, Fuh J, Huang C, Lirng J, Lin Y, Lee P, Kao H, Lin C, Wang S; Cephalalgia (Mar 2014)
  BACKGROUND Functional and structural disruptions to the pain matrix, which may involve changes in white matter (WM) pathways connecting the pain-processing system and hypothalamus, have been implicated in the pathophysiology of cluster headache (CH). However, previous studies have obtained inconclusive results regarding WM changes in CH, and WM variations between'in-bout'and'out-of-bout'periods of CH remain to be determined.
METHODS Multiple diffusivity indices obtained by diffusion tensor imaging (DTI) and post-hoc probabilistic tractography were used to elucidate CH pathophysiology.
RESULTS Compared to healthy participants, in-bout CH patients showed regionally higher absolute (radial and mean) diffusivities in the left medial frontal gyrus and frontal sub-gyrus and lower absolute (axial, radial and mean) diffusivities in the right parahippocampal gyrus of the limbic lobe. These changes during the in-bout period generally persisted in the out-of-bout period, except for the left cerebellar tonsil. Post-hoc probabilistic tractography showed highly consistent anatomical connections between these altered areas and the hypothalamus across participants.
CONCLUSIONS Distinct WM changes were observed in episodic CH. Connections between the pain-modulation areas and hypothalamus may be involved in CH pathophysiology.
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Lisa, I'm not a doctor, and we have a couple of actual physicians who visit this board, and I will defer to them here. And if all this works for Tom, then who am I to say? But a few observations: ranitidine (Zantac) is used mostly to treat GERD (it's an H2 blocker, not a beta blocker). I have to say that I have never seen it prescribed for CH (which doesn't mean it never has been, or that it isn't effective). Periactin isn't a beta blocker, either (I'm pretty sure). It's confusing to me why it would help, although I've seen it listed as a kind of if-nothing-else-works treatment for CH. Yes, the "heavy pain killers" generally do not help, and can make matters worse. It's hard for me to think of why a doctor familiar with CH would prescribe them.
Verapamil, yes, it's often used, and imitrex shots are very widely used. Beta blockers, such as propranalol, are sometimes prescribed, but I have no idea of the wisdom of prescribing them in addition to verapamil, since they both affect blood pressure.
It just seems like a strange cocktail to me -- again, I'm no doctor, and I could be wildly wrong. If you have any doubts about Tom's doctor, there is a list here -- https://clusterbusters.org/?page_id=455 -- of docs (in the US and Canada) recommended by folks with CH, in case you might want to look into one near you.
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Lisa/Tom, some things to consider:
Try downing an energy drink or energy shot at the first sign of an attack (or a strong cup of coffee, although some people think the taurine in the energy drinks/shots is helpful). Basically, the more caffeine in the drink/shot, the better. This can abort an attack, or reduce its severity.
While waiting for the meds would be an ideal time to try busting (taking psychedelics, often at subhallucinogenic levels -- it's what this site is primarily about, although we're happy to help with more conventional things). It could also be a good time to give the licorice root protocol a try: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068    (You can read more about busting in the "ClusterBuster Files" section of this board. Here's the first file: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865)
I guess we'd be curious to know what meds Tom is planning to go back on.
Has Tom tried the "vitamin D3" protocol that has helped a lot of people? https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804
He can almost certainly -- very certainly -- get faster aborts with an O2 system using the mask made for people with CH -- http://www.clusterheadaches.com/khxc -- and a higher-flow-rate regulator (25 lpm or more). Read more about O2 at the CB Oxygen Page under the black and white MENU tab on the left side of this page.
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Welcome, Lisa. What's he doing now for his CH? What has he tried?
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Many people do okay with busting while still taking verapamil. By "okay," I mean some seem to bust fully, but most get some relief but not complete relief. No one seems to have had any trouble with a conflict between D3 and busting. (I'm guessing you're familiar with Batch's caution about the possible interactions between the calcium supplements that are part of the D3 regimen and verapamil. He says >>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.<<
In terms of busting materials, I suppose many people here would advise you to try the psilo if you can, since many seem to consider it a superior busting agent. But RC has plenty of successes to its credit, and you're right that there's a whole lot less tripping involved. Yes, 1 gram dried is the pretty standard recommended psilo dose, and some people think that tripping hard, as you did, makes the M particularly effective. But the "official" CB busting document says this: >>Everyone is different so the range for a cubensis dose will be from about 0.5 grams to 1.5 grams. With more powerful species such as Psilocybe azurescens or Psilocybe cyanescens, a quarter or half a gram will be enough.<< (https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128444) Maybe views on this have changed, but I know we have had people here who have had success with doses of less than a gram.
As you can see, this is just information, not really a recommendation. I'm hoping it might help you consider your options. Others will add more, probably more valuably.
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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!
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So very sorry to hear this news, Bob.
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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.)I have been using Amp energy drinks but will definitely be looking at labels now. -
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!
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lolit's out of my hands(not making fun of your overall advice, mikemac. others have also said this helps them, and, as you say, others have said it doesn't.)
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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.
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Cindy, AO is still here, I'm happy to say -- he just has a different screen name now.AgentOrange (former member here) -
I am out of cycle and can't stay away from this site.It saved my life.Â
And you, in turn, have helped many, many others. Thank you.
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  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.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?
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.you can start with a low dose -
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=1391355305You 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. -
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=1314134804Â 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.
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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.
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Somebody recently reported good results with RC from www.iamshaman.com, which used to be the go-to place and then had stopped carrying RC.  Another site, www.shamansgarden.com, is somehow affiliated with iamshaman and has been vouched for by high-level CB folks.
I like www.psychoactiveherbs.com, but they seem not to be selling RC right now.
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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.
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 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:people like you are a good example of why I don't bother posting here.
ÂI 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.
How Many Ya'll Are Chronic
in General Board
Posted
Donnie, I am very sorry to read this (glad the O2 is helping, but not happy about anything else). If the RC didn't make you sick, would you consider going back to it, maybe at higher doses? If so, would you tell me/us how it was making you sick? Stomach upset? Nausea? Maybe there are some ideas that could help you -- if you feel like trying it again. Do energy drinks help at all? Melatonin at night? Are you doing D3? Just trying to think of relatively affordable things you might do.