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CHfather

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    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. 

    Close minded Doctors

    in General Board

    Posted

    Legion, what's your oxygen system like?  Are you using a "standard" 15 lpm with a "standard" non-rebreather mask?  If so, you'll get much better results with the O2ptimask (http://www.clusterheadaches.com/khxc/) and a higher-flow regulator that permits you to hyperventilate.  In the short run, you could try (a) replacing the reservoir bag on your mask with an unscented turkey bag or large garbage bag; and (B) tilting your head down (like you're looking toward your feet) while you're on the O2.  Some people, including a prominent CH doctor, say that helps.

    I'm a pretty gentle soul.  I had heard people saying they wanted to kill someone and I had always assumed that was a figure of speech.  Until I had to deal with my daughter's neurologist.  Arrogant, uncaring, stupid monster, that neurologist was.  There's something seriously wrong with your doctor, LEGION, prescribing esgic-plus, which might only help because of the caffeine.  Has he never heard of the internet?  Doesn't he have some kind of prescribing book that would tell him what to prescribe?  To me, he's just another monster.  We can hope that busting will work for you and you won't need the standard meds, but as Jeebs says, it looks like you would want to get to a headache center ASAP to get those meds, if only for future emergency use.

    Need help - Old tricks not working anymore

    in General Board

    Posted

    If you think the verap alone could work, you might know that there are more than a few people here who have busted with success while on verapamil.  Not complete success in most cases, but enough to make a difference.   So maybe you could start the verap, then bust, and see what happens.   I haven't heard the same about success with busting while taking prednisone.   

    Or, as Jeebs says, go with just the verap/pred and ride out this cycle that way.  You don't say anything in your first post about preventive busting between cycles; maybe you'll want to start that.

    CH Tatoos?

    in General Board

    Posted

    unless i'm mistaken, there are four in the first row.  if you click on the right-hand one (the new ink), it'll take you to a page where there's at least one more (boxes on top right, second row, second from left).

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