Jump to content
ClusterBusters

CHfather

Master Members
  • Content count

    5,343
  • Joined

  • Last visited

  • Days Won

    224

Posts posted by CHfather


  1. Zac, have you tried the vitamin D3 regimen that has helped many, many people?  It seems to me that before you try something like RC (or another psychedelic) that might have problems associated with it for you, the D3 would be a very sensible thing to look into.  For most people, it has some positive effect; for some people its effects seem quite amazing, ending cycles quickly, even for people with chronic CH.  There have been a small number of people (two or three out of more than 80) who have reported that the D3 approach made their headaches worse, but that effect stopped when they stopped taking the D3 regimen.

    It's relatively inexpensive and easy to do.  Here's a file that will tell you more about it: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804


  2. if I understand well, they are making the patient choice for the phase 2 study ? 

    janste, I just don't know whether it has proceeded that far yet. My understanding from what Dr. Halpern was saying was that full double-blind clinical trials would be held in Germany and that there might be "open label" trials in the US and elsewhere.  I have received no communication from Entheogen that anything has begun, and I would strongly imagine that if it had reached the patient selection stage there would have been some notice about that here at the Clusterbusters site.


  3. Thanks, Ken!  So glad to hear you're getting some relief from this.  From your post, I'm wondering whether you're doing the whole regimen as it is now recommended:

    Precise specifics are a bit of a moving target, as experimentation teaches more about what works and what doesnÂ’t, but here are the elements of what is currently recommended for people who are in cycle.

         1.  About 10,000 international units per day of vitamin

              D3, taken with food.

         2.  2 or 3 calcium citrate tablets per day (at least 500

              mg. of calcium), with or without food. These tablets

              should also contain magnesium and zinc, and they

              often also contain a small amount of vitamin D3.

         3.  2,000-3,000 mg per day of Omega-3 fish oil, with

             food.

         4. Two glasses of lemonade or limeade per day, taken

             with meals. (Other high-citrus juices are also

             acceptable, but lemon and lime are said to be higher

             in citric acid content. Batch has said that he also

             favors margarita mix.)


  4. Gord, I can only speak to the D3, where the recommendation is to just stay on it, since (unless you accept jimmy7's perspective) it's not harmful and is probably good for you.  Some people reduce the amounts (to, e.g., 5000IU of D3 and the rest proportionately), others stick with the whole thing.  The level at which possible D3 toxicity sets in is about 40,000IU/day, over several months.


  5. just a small addition to jeebs' advice:  do the redbull immediately, then get on the O2.  the combo is pretty potent, at least for "beginners."  if it works, then stay on the O2 a few minutes (5 minutes is recommended) after the HA has cleared -- helps prevent recurrences.


  6. well, i guess he couldn't cover everything, but the fact that he left out oxygen is pretty creepy.  not having heard of doxepin before, i went over to ch.com to see what i could learn there.  very little discussion of it there, either.  and, isn't the "oftentimes" in what he says here a substantial exaggeration: >>cortical anti-inflammatory steroids will oftentimes stop a cycle of cluster headache within a matter of 24 to 48 hours.<<?


  7. Good on you for hangin' tough with the doc, Brad.  Many people have experienced frustrating slippages between getting an O2 prescription and actually getting the thing set up right.  I have some suggestions about that in that O2 file of mine, so you might want to give it a quick read-through.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    First thing I recommend is calling the O2 supplier to make sure they're on the right page about what you need. Often a prescription will be quite simple, something like "O2, 12-15 lpm" -- if you have any wiggle room, try to get the highest flow and the best equipment (e.g., a demand valve system) you can.   Be sure you're getting big tanks ("M tanks") and, ideally, also a smaller, portable one for the car (an "E tank"). These usually require different types of regulators (and it's nice to have a mask for each).  You've mentioned that you're not rolling in money, so I guess you have to consider whether the costs would be higher . . . just suggesting that sometimes O2 suppliers know what they're doing regarding CH patients, and often they have no clue.


  8. Primary Medical Doctor, another name for one's Primary Care Physician

    Hence PMD=PCP

    * Psychotic depression, major depression with psychotic features

    * Pre-metal dielectric

    * PageMaker document, file name extension .PMD for Adobe PageMaker

    I'll bet they're going for the one in blue and red up there, and not the Pakistan Meteorological Department. 

    Case closed.


  9. Sounds like you got shuffled from the doc himself (isn't that who Jeebs communicated with?) into the doc's bureaucracy.  Any chance of getting Doc G back into the loop?  What stops can we pull out here to do that?  Halpern always says he's standing ready to help, and that he reads and responds to his emails from Clusterbusters folks.  His relationship with Goadsby isn't perfect (as he reported at the conference), but it seems like Goadsby might respond to a nudge from him on a collegial basis.   

    PMD=PCP is what I said!  I'm wrong enough often enough here not to be wrongly accused of being wrong when wrong is what I wasn't!

    Hopin' that laughing gas works!!!!!!!  That would be cool.    Glad you're going to try it soon.  As always, my best to Michael.


  10. wish I wasnt here!! lol

    One thing that binds us all is the faith that one day, not so far away, nobody will have to be here.  BOL-148 seems to be on the horizon. Other advances that have been discussed here seem to be progressing.  For now we're stuck with the next-best thing, but soon, maybe . . . .  What a day it would be!  (Re BOL: You might as well go here and sign up--doesn't seem like it could do any harm: http://www.entheogencorp.com/community/


  11. What a nice message, Gord -- thanks for checking in!  Bless you for being proactive and attacking this thing so aggressively!  Hoping your HAs were just post-dose hits and you're on your way to PF status.  We'd recommend getting your oxygen taken care of (apparently you know what was wrong with the system you had), but you know that.  You're "officially" part of the family now, so stick around!

    Jerry


  12. brad, i looked back over this thread to see whether you're tossing down an energy drink (redbull, monster, etc.) at the first sign of an attack.  don't see anything about it, so i'll mention it here just to be sure you know it's a strategy that helps for some people.

    also, when you're talking to your doc, it seems that injectable imitrex, not the pill form, should be high on your agenda, along with the oxygen conversation.


  13. well, i know i said 'nuf said about busting, but you reminded me of something a truly wise guy once wrote:

         To be, or not to be, that is the question:

         Whether 'tis nobler in the mind to suffer

         The slings and arrows of outrageous fortune,

         Or to take arms against a sea of troubles,

         And by opposing end them?

    i'd say that most people here have chosen to take arms against their sea of troubles, and in most cases they have, if not ended them, at least put a great big dent in them.

    www.iamshaman.com

    completely legal to buy and own.


  14. Brad, there are threads about ketamine at ch.com that you might want to look at.  Here's one example: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1285659007

    (It's also an example of why it is sooooo much nicer, for me at least, to be here rather than there.)

    You can enter the word ketamine in the search bar there to see more. (Interestingly, their search function is so much better than ours that it will take you to a thread here about ketamine at Clusterbusters that you won't come to by using the search bar right here.)

    You've given us some hints about why you're resistant to busting (even though it seems to have "worked" when you weren't even deliberately using it to treat your CH), and we've given you some reasons to reconsider your reluctance.  'Nuf said on that topic.

    The "official" medical journal materials on O2 talk about 7-12 lpm flows (or 15, tops).  I know it's tough to push doctors, but someone here was able to get a demand valve system paid for by insurance (as I recall), so I think you should try to share info about higher flows/better systems to try to get the most effective O2 prescription you can.


  15. Well, here's some very helpful guidance from Wikipedia:

    PMD may refer to:

        * LA/Palmdale Regional Airport (IATA: PMD), a commercial airport in Palmdale, California

        * PMD (rapper), member of group EPMD and solo artist

        * PMD (software), code analyzer for Java

        * PMD 85, 8-bit personal computer produced in Czechoslovakia

    As an abbreviation, PMD may stand for:

        * Phi Mu Delta, a men's social fraternity

        * Pakistan Meteorological Department

        * Pakistan MNP Database (Guarantee) Limited

        * Palmdale, California, mostly in hip-hop culture known as "the PMD"

        * Pelizaeus-Merzbacher disease

        * Pellucid Marginal Degeneration, a degenerative ophthalmological disease

        * Photonic Mixer Device

        * Physical Medium Dependent, an Ethernet Layer 1 (PHY) sub-layer

        * Pokémon Mystery Dungeon, a series of games for the Nintendo DS handheld video game system

        * p-Menthane-3,8-diol, the largest constituent in an insect repellent derived from the lemon eucalyptus tree

        * Polarization Mode Dispersion

        * Polish mine detector

        * Premillennial Dispensationalism

        * Programming Mistake Detector, see PMD (software)

        * Primary Medical Doctor, another name for one's Primary Care PhysicianHence PMD=PCP

        * Psychotic depression, major depression with psychotic features

        * Pre-metal dielectric

        * PageMaker document, file name extension .PMD for Adobe PageMaker

    I'll bet they're going for the one in blue and red up there, and not the Pakistan Meteorological Department. If the latter, I think they would ask explicitly, "Is he the Pakistan Meteorological Department?" Or, "Is he the LA/Palmdale Regional Airport?" (To be clear, no offense regarding Pakistan is meant in any way here; it's just the funniest (to me) of the things that are listed here.  I mean, don't you think that if "Pakistan Meteorological Department" merits inclusion, there must be a thousand others? Where's the Peruvian Metallurgy Department? Or the Pennsylvania Misanthropes for Disarmament or the Patagonian Mothers against Drunkenness? (No offense to Peru, Pennsylvania, or Patagonia, either!))

    And though Jeebs is in my opinion far more qualified than most doctors, I think answering the "referring doctor" question with "Bejeebers" might throw them off.  It appears that the X-Man can be both the referring doc and the PMD, so why not either go that way, or include a note saying that Dr. Goadsby himself is in effect the referring doctor, since he responded to a phone call by inviting Michael to the clinic? 

    All this is just my PMD, of course (my Personal Meditation on the Discourse). 


  16. How much redbull should I drink? and how quickly? Cold or warm?

    I guess you could try the giant-size one, or the mid-size (335 ml?). My daughter was helped quite a bit even by the smaller one.  Chug it down, as much as you can (I don't think that chugging it makes it more effective; just gets it into your system faster).  Cold is fine; I don't know of any reported differences between cold and warm.


  17. Crystal, I do understand why you don't want to keep shoving more stuff into your system.  Maybe the water will work -- I know it has for some people.  But here are a few thoughts.

    It's my impression that some people take more melatonin than 9 mg when they're in high cycle.  I've read of 12 - 15 mg. not being an uncommon dose.

    Based on experiences reported here and even more so at ch.com, I still think the D3 approach is worth serious consideration.  Here's the kind of comment that keeps me recommending it, even though for some people it has not been effective: >>>I have been headache free pretty much since starting the D3 regimen. I'm also taking melatonin at night. I'm convinced the D3 regimen. followed exactly as the directions indicate have ended my cycle.<<<     I do think that following the directions exactly is important.  (Ah! I just realized that the "123 days thing" you referred to is the D3!  Good.)

    In order to take the seeds, as Bejeeber has written, you want to be off the prednisone and the imitrex for several days.  Verapamil seems to be less of an obstacle to busting.  Getting a working oxygen system is pretty essential to being able to drop those meds. You haven't said whether the oxygen that didn't work for you was at least 15 liters per minute using a non-rebreather mask.  It's true that there are a small number of people for whom oxygen just doesn't work, period, but for most people, it's just a matter of getting a proper setup.  (If you have not had a proper setup in the past -- my daughter, for example, was given an oxygen "concentrator" that could only put out a maximum of 8 liters per minute and she was given nasal "cannula" -- those things you stick into your nose -- and so she and her doctor believed, falsely that oxygen "didn't work for her -- then maybe your doctor would be willing to prescribe a proper one.  In that file I directed you to, there are links to official medical journals showing that 12-15 lpm and a non-rebreather mask are essential; you could show those to your doctor.)


  18. crystal, that's an awful situation.  my heart is hurting for you, and i know that's true of everyone who reads you post.  my daughter is also 34 and in cycle right now, so it's particularly poignant for me. (she's a lot better off since she got a good oxygen system and started busting with RC seeds, but it's never a picnic.)

    there are a lot of things you can do, and they all are likely to help you (and help you manage future cycles much better) but none of them is likely to be an immediate magic bullet.  you can create your own oxygen system using welding oxygen and regulators and masks that you can buy on the internet.  i'm not sure why your previous oxygen system didn't work for you, but our usual guess here is that the flow was too low or the mask was not right.  you could start by reading this file and then asking any questions you have: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    there are some harbor freight stores near pittsburgh where you can get oxygen and a regulator.  you'll be able to find them here: http://www.harborfreight.com/store-finder/

    you can take rivea corymbosa seeds instead of mushrooms.  seeds are just as effective and can be purchased and possessed legally (preparing and drinking them is illegal).  i'd recommend that you seriously consider ordering some today and having them overnighted to you. among the many places on the internet where they can be purchased are www.iamshaman.com and www.psychoactiveherbs.com

    read more about seeds here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

    you'd probably want to order 150-200.

    you could start today the vitamin D3 approach that has helped many people, some of them quite quickly.  it's relatively inexpensive, safe, and all the ingredients can be purchased at a decent pharmacy.  read about it here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

    have you tried melatonin?  are you using RedBull or Monster drinks taken at the onset of an attack to try to abort them?

    our best wishes to you . . . hang in there and the good folks here will hang with you.

×