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CHfather

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    Need every single persons help

    in General Board

    Posted

    I know you don't believe in Facebook, CHS, but at Gupta's FB page people can post whatever messages they want.  There's one there about CH that was just posted a few days ago.  You could post about CH, or you could post your request at your blog that he interview you on CNN. 

    Some days I troll (no other word for it) sites where people mention CH to try to give them correct information on my own and refer them here and to CH.com.  That might be another way for you to spread your word.

    I've also written to a couple of prominent TV and media doctors whose coverage of CH was woeful.  Never heard a word back; never got a correction of the bad/partial info they were spreading.

    Gupta has covered CH on TV in the past (2010), with his usual mix of accurate and inaccurate reporting.  http://www.cnn.com/video/#/video/health/2010/01/06/gupta.cluster.headaches.cnn  Maybe he increased awareness, and maybe some people got a better diagnosis or learned about O2 (the primary subject of his coverage) as a result. 

    All awareness is good, so I wish you well, of course.  But since Gupta is aware of CH, I guess we have to assume that he has his reasons for not covering it more frequently (no news, maybe -- the 2010 show was about O2 as a "new" treatment for CH -- or not that important to 99% of his viewers). 

    Scared to Death

    in General Board

    Posted

    You've already thought of this, I'm sure.  Remember to bring some strong energy drinks on the plane. (I think they might sell RedBull on the plane, but if you can pick up something stronger at an airport concession, such as a Monster or RockStar with more caffeine and taurine, that might be better.)

    I had read posts about people putting sputs under their tongues or building capsules of ground up MM on trips, but I'm traveling with family and probably shouldn't try dosing to hard'
      Just realized it's probably too late for this advice, but if you have RC seeds, a few ground up ones under the tongue are reported to work well, and if you also wanted to dose, RC would affect you least.  And of course since they're legal, you'd have less fear about that.   

    From the posts I've read, a shroom sput almost certainly won't cause any tripping. Here's a post from Ricardo about one possible way to prepare one: >>What I bet would work really well would be to make your mushrooms into a tea using as little water as possible.  Then put the tea into a small tray and use really low heat and (maybe some silica gel) to evaporate all the water out of it.  (not that hard, done it a few times).  What you're left with is a tarry black goo, and if SPUT is working for you, I bet scraping up just a little and putting it under your tongue would work pretty well.<<

    O2 toxicity

    in General Board

    Posted

    Could need some moisture......the O2 may be drying you out. Are you running a bubbler on your O2 set up? 
    Great point, Racer.  I'm embarrassed that I didn't think about that.  There's some info about bubblers/humidifiers (including a place where one can be ordered, if an O2 supplier won't provide one) on page 14 of the Oxygen Guide under the MENU tab on the left of this page.

    O2 toxicity

    in General Board

    Posted

    jimmy, of course you should see a pulmonologist.  Maybe (probably?) it's not a lasting thing.  Do energy drinks/energy shots (or coffee) work for you, so you might at least reduce the time on the O2?  Are you doing the D3 regimen?  Melatonin?  Licorice root?  Of course, busting (M or seeds), if you're detoxed for it.  And heck yes (in my view), if you need to go some conventional meds route to prevent/abort for the rest of this cycle, then that's what you gotta do.  (A long time ago you asked about sleep apnea and CH attacks.  There is a connection.  Have you had that checked out/dealt with in some way?)

    Magic Mushrooms not working anymore

    in General Board

    Posted

    What Jeebs said -- O2, either via welding oxygen or via prescription in one of the ways I suggested.  You might want to stick with that plus your prescribed meds to ride out this cycle, also including energy drinks, melatonin, the D3 regimen, licorice root, or whatever else will help.  RC is not likely to be miraculous for you (just as psilo is not likely to be, even though it worked so well for you the first time), so it seems like you'd have to endure a lot of CH pain over the long run if you dropped your meds in order to try busting and nothing to replace them.  But O2 + energy drinks + those other things I mentioned, none of which will block busting, could enable you to reduce the frequency/severity of your attacks enough that you could drop the meds and bust.  My two cents.

    Magic Mushrooms not working anymore

    in General Board

    Posted

    I can't tell you how much this makes me feel like screaming and crying.  I've ranted so many times that I don't have it in me.  How can these feckers prescribe things with nasty side effects and refuse to prescribe oxygen, more effective with no side effects. 

    And, yes, at least the imitrex will probably block busting. 

    If you're willing to fight for the O2, I have some suggestions (the simplest of which is to find a doc who will prescribe it -- one person here called a bunch of walk-in clinics and just asked whether they'd prescribe O2 for CH).  You can look on this list and see if there's a recommended doc near you: http://clusterbusters.com/?page_id=455.  You can get welding oxygen and set up your own system, which is something many people have to resort to.  Or go back to your doc armed with info and demand O2.  Let us know which if any of these options you'll consider, and we'll follow up with you.

    Newbie so please be patient with me

    in General Board

    Posted

    Tyke, the only "good" thing you can say for your docs is that they, like other humans who don't have CH, really don't understand the pain you're experiencing.  As we've discussed here, no one really can.  They can read about it, but if they haven't felt it, they don't really get it -- not even close.  That's not a good reason to deny you first-line treatment (oxygen and injectable sumatriptan at least, if not also melatonin), but it's often, if not almost always, the reality.  If you have someone who can come with you to advocate for you (with you), that often helps.  We'll be sending you good vibes tomorrow.  I don't know of anyone who has tried to get welding O2 in the UK, but let's assume you can do that if you get turned down (from a very quick google search, it looks to me like it might be feasible). 

    Newbie so please be patient with me

    in General Board

    Posted

    Tyke, I'm on my knees here, begging you.  Get oxygen.  There's no reason why the NHS shouldn't give it to you.  It's the #1 recommended abortive according to EU medical standards (note that injectable sumatriptan is listed second).  (Yes, they all have "A" ratings, but the order is not accidental.)   It's nice that the NHS wants to save money . . . but at the expense of your suffering???????  Really???

    From http://www.guidelines.gov/content.aspx?id=34898

    Major Recommendations

    Treatment Recommendations for Cluster Headache . . .

           Treatment of Choice

    Attack treatment      

    Oxygen inhalation (A)

    Sumatriptan 6 mg, sc (A)

    Zolmitriptan 5 mg nasal (A)

    Sumatriptan 20 mg nasal (A)

    Magic Mushrooms not working anymore

    in General Board

    Posted

    UncleG, here's some basic info about RC: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974  The info there about how many seeds to take is quite a bit lower than what we have learned since those files were posted -- I think most people start with at least 30 and often end up taking 50-60 in later doses.   For most people there are no, or virtually no, psychedelic effects.  You can get RC legally lots of places.  Here are two: www.tranceplants.net and www.psychoactiveherbs.com.

    Consider the "vitamin D3" regimen too.  A lot of people attribute very good results to it.  Inexpensive, probably healthy for you, and effective.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

    Like Moxie says, there are always nuances to how these various things work best for individuals.  Keep asking questions and letting us know what you're doing, and how you're doing.

    Magic Mushrooms not working anymore

    in General Board

    Posted

    UncleG, I'd say that things worked out wonderfully well for you last time, but you might have to be more patient this time -- it usually takes several doses to knock out a cycle.  Also, as I read it, last time you waited about a week between doses but this time you dosed two nights in a row.  The very strong belief here would be that the second dose didn't really help you, because of the phenomenon known as "shutting the door," in which a dose prevents subsequent doses from reaching the right receptors for about five days.  So, you have to wait five days to be sure the next dose is going to help you.  See http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130968

    Also . . . are you "detoxed" from all meds that might block busting, including opiates and the "standard" CH meds such as imitrex, verapamil, prednisone, etc?   See http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731  I see Jeebs has already addressed this

    Okay, so in addition to busting, you want to get some other ducks lined up to help you.  Drink an energy drink (Monster, Red Bull, etc.) or an energy shot (5 Hour Energy, 6 Hour Power) at the first sign of an attack.  Some people say the colder the better.  You can go for coffee, too, but most people think the energy drinks are better.

    GET OXYGEN!.   Read about that by clicking on the MENU tab at the left side of this page.

    Try melatonin at bedtime -- 6-9 mg to start with and work up to see what works.  Some folks here take 20-30 mg.

    Don't eat foods with MSG (monosodium glutamate) in them.

    Other folks will have other thoughts.

    Newbie so please be patient with me

    in General Board

    Posted

    It's very good news that things are improving for you, Tyke.  And please keep in mind that oxygen has no side effects, and it doesn't interfere with busting.  Verap and the nasal spray do have side effects (eventually, if not immediately), and do interfere with busting (and for many people if not most, they tend to lose effectiveness over time).  In this circumstance, you might want to go with conventional meds until your cycle ends, since they seem to be working.  Makes sense.  But at the least you would want to be prepared for a possible next cycle with O2, and you might want to bust preventively between the end of this cycle and the likely time your next one would begin.

    Need help - Old tricks not working anymore

    in General Board

    Posted

    Here's hoping that maybe your hit last night was a slapback.

    That seems to be a different way of preparing than the CB files.Does anyone have any thoughts 

    I've admitted here that preparing HBWR got the best of me, so don't overvalue what I'm saying (and I guess these guys must be knowledgeable, since it's their business), but I don't see how soaking ground-up husks, even with the outer layer removed, can be anything but unnecessary at least, and potentially risky in terms of nausea/undesirable chemicals.  Especially soaking it all for 24 hours, as the text under the video suggests.   There are two other aspects in the text that are at least debatable.  Some people say that purified water lacks some chemicals that help with the extraction.  And some people recommend against using a coffee grinder because heat harms the LSA.  We've discussed that at some length here, and some people say that a quick pulse or two isn't likely to hurt anything; but I don't know how much heat you would generate trying to pulverize these hard husks.  It's interesting that in the many comments under the video, there doesn't seem to be anyone saying "Wow, thanks, that really worked."  It still seems wiser to me to crack open the husks, scrape out the insides, and grind and soak that.  Or use RC.

    Newbie so please be patient with me

    in General Board

    Posted

    You're doing great with reading and acting!  Here's some info.

    RC seeds in the UK: http://www.allsalvia.co.uk/cluster_headaches.htm.   Yes--inexpensive and effective.  (If your spray is sumatriptan, you might have to stop using it for the seeds (or any hallucinogen) to work.)

    Vitamin D3 regimen: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

    Yes -- Get that O2.  If not from NHS, then another way.  Consider ordering this mask, which makes O2 considerably more effective than the standard non-rebreather mask: (European supplier) http://headachemasters.com/product.asp?product=3

    Need help - Old tricks not working anymore

    in General Board

    Posted

    Looks like I fell out of the loop on the exact D3 regimen during my time away from the board.I am not sure what you mean by the daily lemonade/limeade thing.Would someone mind sending me to a post giving the exact regimen?I did a search and see plenty of discussion, but I don't see the exact regimen listed.I've just been taking D3, fish oil, and magnesium nightly.
    This post from a while back gives the regimen as it was prescribed in 2011. I haven't checked recently for updates, but I'd love it if John (C'man59) or anyone else would let us know if this file needs to be brought up to date.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

    Need help - Old tricks not working anymore

    in General Board

    Posted

    Hooray for the ice!

    You are correct that I am taking 10,000 IU daily.50,000 honestly sounds a little scary to me

    Like C'man59, I feel very confident that 50,000IU per day for a week won't harm you, especially since your D3 is so low. (I'm hedging that a little because, after all, I'm not a doctor.)  Some people get side effects they don't like from D3 (and some people here have said the D3 regimen made their attacks worse), but I don't think there's a general medical danger of going up to 50K IU/day for a week.     But it's probably important to do the whole thing except for the calcium, which would include the daily lemonade/limeade, too (I think -- maybe C'man59 will set me straight about that).

    Need help - Old tricks not working anymore

    in General Board

    Posted

    At least for oxygen and RedBull/energy drinks in general, the answer is definitely yes.  But most people seem to be able revitalize the effectiveness of O2 with a better mask, higher flow rate, and different breathing strategies (see p22 here: http://clusterbusters.com/wp-content/uploads/2012/11/OXYGEN-12-20122.pdf).  And there are energy drinks that are a lot higher in caffeine and taurine than RedBull.  Someone was just mentioning a high-octane Monster or Rockstar brand the other day. I think it was Monster Nitrous, which does have twice the caffeine, albeit in a somewhat larger can.  Someone else has mentioned Monster Hitman Sniper as a favorite.  OMG, is there caffeine in there.

    There have been some people here, just a few, who have said that HBWR worked for them when RC didn't.  It's a little puzzling to me, because the LSA in both of them is the same (I guess some folks disagree with this); my guess tends to be that their RC was weak in some way and the HBWR wasn't. (When I say the LSA is "the same," I mean chemically; obviously, you get more LSA from fewer "seeds" with HBWR, but again, that's because the HBWR isn't a seed but a husk--the seeds are inside.)  I had a devil of a time trying to prepare HBWR -- never was sure I was doing it right.  But I think what you are describing is the right process, although people have their own wrinkles.

    Some people here say that if you soak RC (or, I suppose, HBWR) in cold peppermint tea you will get a stronger concoction, LSH instead of LSA.  Some people doubt that.  Maybe no harm in trying it.

    Close minded Doctors

    in General Board

    Posted

    Here's a list of doctors in Louisiana that have been recommended by people with CH:

    Baton Rouge: Dr. Steven Zuckerman

    Covington: Dr. Srinivas Ganji

    Lafayette: Dr.Steven J. Snatic

    Metairie: Dr. Daniel J. Trahant

    New Iberia: Dr. Timothy F. Himel

    If one or two are near you, you might call the office and say you have cluster headaches and want to be treated by someone who understands them. 

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