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CHfather

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Posts posted by CHfather


  1. Zak, here's a list of doctors in England that have been recommended by people with CH.  It's from http://www.ouch-us.org/chgeneral/doctors.htm

    I don't really understand the National Health system, but if you have the option, maybe it would be relatively easy (or easier) to get an oxygen prescription from one of these.  Can't speak for its currency, since I believe Goadsby, for example, is now in the US.

    Rachel Tudbury

    Watford, Herts

    Dr Dennis Briley

    Princes Risborough, Bucks

    Dr. Sarah Benton

    London

    Dr. E. A. MacGregor

    London

    Dr Robert Hailwood

    Horwich, Bolton

    Manjit Matharu

    London (Queen's Sq.)

    Peter Goadsby

    London (Queen's Sq.)

    Craig Maxwell

    Radlett, Herts


  2. Zak, do you have anyone who can advocate for you regarding the oxygen?  Because for many people it changes everything.  I had to fight not only for, but with my daughter to get her oxygen--she like you had given up on ever finding any help and she just gritted her way through some very severe attacks (8s and 9s) for years, and she didn't want what she was sure was "false hope" from oxygen.  But we got it, after many travails with the system, and it worked beautifully to abort her attacks, and changed--probably saved--her life.  It's the #1 prescription for CH according the European medical standards.  You can read about that and more here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    (This is a page I wrote after dealing with oxygen on my daughter's behalf; it's different from the one Ron referred you to yesterday.  I'd really encourage you to look at it.)

    Maybe someone from this board over on your side of the water will be willing to advise you or even help you.  In the US, welding oxygen can be obtained without a prescription and you can order the additional parts you need (regulator, mask) over the internet.  There's discussion about all this at that link above.  I don't know how that works in Great Britain.

    Because you (like my daughter) don't have a history of using pharmaceuticals that interfere with busting, I'm expecting you to have good success with the D3 regimen (don't forget the calcium citrate formulation and maybe a couple of glasses of lemonade) and with RC.  But oxygen is essential, too, eventually if not right now.  You can get some nasty "post-dose hits" for a day or two from the RC, and it's very nice to have a quick abortive nearby. 


  3. Since it's not really clear whether kudzu interferes with busting (I don't see why it should, but I don't know anything), I'd still consider an initial RC bust now if you have the seeds and you're not on any of the meds that definitely do interfere with busting. Worst that can happen (assuming your reaction to low-dose RC is as mild as most people's) is it won't work. Then eliminating the kudzu before another bust five days from now (Thursday). And immediately starting the D3 regimen.  And working on getting oxygen, if you don't have it.

    Also, chugging a RedBull or other "energy drink" with caffeine and taurine at the first sign of a headache helps many people. 


  4. Welcome, ztc.  The RC is going to help you.

    If you haven't, you should read TommyD's pertinent files in the "Clusterbusters Files" section of this board, starting maybe with "The Dosing Method":  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130612 .  You should read the "LSA" file, too.  And then you should ask questions.

    I have to say that it's extremely rare for anyone to get more than a very mild buzz from the recommended doses of RC, especially the recommended starting dose of maybe 10-20 seeds.  It's also rare for those low doses to have much effect, for most people, on the CH.  You will know yourself best, of course, but I'm thinking Thursday is a long way away and I don't think you'd have to worry about effects at work if you took the dose the evening or night before work. So I'm saying maybe you'd want to do something sooner, if kudzu is all you've been taking and you're "detoxed" from the meds that could interfere with busting (see TommyD's file on "interactions" if you're not sure about this).

    Or (and/or, really), I think you should consider the vitamin D3 regimen that has helped so many people, which you could start this afternoon and which does not seem to interfere with busting.  Very much more likely to help you than the kudzu, I'd say.  The recommended dosage for treatment during a cycle is 10,000 international units per day (with food) of vitamin D3, 3-5K mg. of Omega-3 fish oil (with food) per day, and a couple of calcium citrate tablets (the kind that are formulated with magnesium, zinc, and sometimes a little D3) a day (not necessarily with food).  Many people find that a glass of lemonade twice a day enhances the effects.  I've just told you the basics, which I think is all you need to know, but you can read more about this approach (and many success stories) at these lengthy threads:

    http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1300245052

    http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/50

    You have oxygen, I hope!  If not, that should be another priority for you.

    The great folks here, who understand what you're going through, are very generous with their help.  Ask questions, and, please, keep us informed, since we learn from you, too.  PF wishes.


  5. Thanks, all, for your thoughtful responses here and at my earlier post.  I really appreciate it.  Unfortunately, neither typical sleep meds such as versions of ambien, nor drowsiness-inducing meds such as klonopin, nor non-pharms such as melatonin or valerian, have really helped her, even at high levels (although for a series of flukish reasons she has not yet been prescribed lunesta -- so I guess we might hope that that would work for her).  I'm at the point where I feel the sleeplessness (or, really, the night-time sleeplessness--she could sleep all day, I think, if she didn't have to work) is taking such a toll on her that--after we demand some lunesta from somebody and see if that works--an RC trial will probably be the next step. Guess she might have to shift busting strategies (or maybe not) if she goes that route.  I'll let you know.

    Again, thanks.

    Jerry


  6. Given what I wrote in my other recent post about RC, sleep, and my daughter, I am inclined to recommend that she test low doses of RC seeds as a sleep aid, either as SPUT using maybe 4 or 5 seeds, or as an LSA preparation (crushed seeds in water) involving something like 8-10 seeds.  To enable her to sleep would be a huge blessing, a big step toward the "normal" life she's been deprived of.  She's tried practically everything the docs can offer, without any results except the usual unpleasant drug side effects. 

    Does anyone have any experience, or even an informed opinion about (a) using LSA as a sleep aid; or (B) the general advisability of taking LSA in small doses on a regular basis (maybe, or maybe not, every day), or © what the likely effect of taking LSA in small doses on a regular basis might be on busting, if/when her cycle returns? 

    An extra-credit question: I don't know what levels might actually be effective to help her sleep; maybe it has to be a full 20-30-or-more seed preparation.  If she did that every five days or so, do you think RC would soon lose its effectiveness for busting?

    I understand if no one has any ideas about this.  I just want to be sure I'm asking the questions as clearly as I can. 

    Thanks,

    Jerry                            


  7. Solace, you give me a chance to briefly clarify what I was saying.  There are whole diets (dietary regimens) devoted to increasing one's alkalinity.  My daughter, who began about 6 months ago eating very little meat, very little sugar, very few processed foods, etc., now has a highly (but positively) alkaline pH.  She also takes the D3 maintenance regimen, in part because I'm not sure that I'm correct in understanding its primary purpose as shifting acidity to alkalinity.  So my overall point there was not necessarily that you/one should take a lot of D3 on an ongoing basis, as much as it is to say that if being more alkaline/less acidic has these demonstrated benefits for so many people related to CH, maybe there's something to it as a general approach to wellness, and steps like drinking more citrus or shifting your/one's diet toward alkalinity-increasing foods will have general benefits.   http://www.rense.com/1.mpicons/acidalka.htm

    BTW, my daughter's CH pattern was much like the others: tolerable headaches for relatively limited time periods followed by increasingly strong HAs for increasingly long periods.  I think that's fairly typical.  I think they also become less tolerable when you realize that they're likely to keep coming back.  Maybe D3 and all that will change things.


  8. If things continue to go well and I get brave enough, I will bring the supplements down to a maintenance level and report my experience in case this info can help others

    From what I can understand about the D3 regimen, the overall goal is to shift your body's pH from acidic to alkaline, thereby reducing systemic inflammation.  So I think one way to test whether you want to drop to a maintenance level, without as much risk of finding out you weren't ready yet, is to buy some pH test strips and see what your level of acidity/alkalinity is.  They work simply and very quickly with any bodily fluid, and they're not very expensive.  I got mine at Whole Foods, but I suspect that any place with a strong supplements section will sell them.  You might know that there's a lot of speculation that most of our bodies are too acidic (here's one brief discussion of that: http://altmedicine.about.com/od/popularhealthdiets/a/alkalinediet.htm), so maybe it's something you might want to think about in the longer run, for yourself and your family, even when you're out of cycle.  (I'm not pushing this. I didn't know anything about it until I did some reading to learn more about the D3 regimen. But it does feel sensible to me.)


  9. Lieutenant2 posted something recently about how well he slept after an RC dose.  Others have written similar things, and it's true for my daughter, also.

    In general, her sleep patterns are horrible.  I know this is also common for others.  So I'm wondering two things: (1) Why is it that dosing with RC so often produces such a sound night's sleep--is there anything useful to be learned from that to help people with CH who have sleep problems? and (2) More practically, does anyone use RC as a regular sleep aid -- SPUT method, maybe, or small doses (5, 6 seeds) taken regularly?  Related to (2), does anyone know whether regular SPUTting or low-level doses would somehow mess up serious busting?  My daughter's inability to sleep at night, even when she's exhausted, affects her life cumulatively about as badly as CH does when she's in cycle.  She's taking some serious stuff now to try to help her sleep, but it's not really helping.

    Any advice/experience would be much appreciated.


  10. CHFather, you click on the link and the Dylan video does not come up? It does when I click on it. Or am I misunderstanding you?

    Yes, when I click on the link there in your post (or paste it into the address bar), I get a YouTube "spotlight videos" page which at this moment offers me a Jennifer Lopez video, a Lady Gaga video, and two other choices.  Weird. 

    But I can find that "Idiot Wind" one myself, surely, if I try hard enough.


  11. Dave, this subject comes up from time to time, and is valuable to pursue.  As someone has noted, you can't give monkeys or rats cluster headaches, so it's very hard to do the kind of animal testing that can be done with many other conditions -- including for example depression, which can be caused (or at least the symptoms of which can be caused) in rats.  That means it's hard to find a cause, and it's hard to find a cure, by applying one major  medical-research model, of inflicting stuff on lab animals and seeing what happens.

    There's a quite a long thread just a few posts down from this one, "Common Threads of CH Sufferers" -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1276776645 -- where ideas are also put forward. 

    I'm no expert, but it seems to me that since CH can be hereditary, then there must be some kind of genetic disruption involved, which might rule out some hypothesized causes that aren't operating at a genetic level.


  12. Well, I now believe that at least some Oscar recipients might be sincere when they say "I'm honored, but I don't deserve this." 

    Among other things, I wouldn't be here at all -- and my daughter probably wouldn't be doing better -- if I hadn't received so much help and support when I first arrived.  I still remember the screen names of a lot of the folks who quickly appeared to help us: you (Bejeeber); Jsmacks; TakinitEZ; kaboom; the bb; alleyoop; agent orange; Becky v; clustermom13; tingeling, Hipshot; Bonkers; Psiloscribe; FunGuy; 1961mom; ThatHurts; Napa1026; raquelinkansas; shappyparasol; Dallas Denny . . . and then so many more whose presence made it even more worthwhile to stick around: Pixie-elf; DereksGirl; Keith; les genser . . . and even those who have come and left but still left an impression: Jilly from Philly; met la; Frustrated123; John . . . and let's not forget TommyD for his great, helpful files . . . and then all the more recent arrivals (and returnees) who are adding new energy and ideas that keep the place worth returning to . . .

    The red light has been flashing for quite a while now, so I'll just end the way so many of those recipients do: it's my daughter's courage and grace that inspires me on a day-to-day basis, and what I encounter here is a reflection of that.


  13. Solace, thanks for the update.  I had been wondering what had become of you.  I'm glad you had some improvement, and sorry that it has not been complete.

    You had mentioned that your husband was going to set up your oxygen system.  Has that been accomplished?  It can make a big difference.

    Yes, it seems shocking that a person can be trained as a neurologist, practice as a neurologist, and not even know what a cluster headache is.  My daughter was misdiagnosed for many years, first by our GP as having a gluten allergy, and then by two neuros as having trigeminal neuralgia.   Since so many neuros don't even recognize CH (and yet it's very likely that they have had at least one CH patient), it suggests to me that there are a whole lot of people out there who think they are suffering from "migraines," "tension headaches," sinus headaches," "trigeminal neuralgia," or some other condition, who in fact have CH.


  14. I don't know if many one else has had this side effect but my tongue and throat became kind of raw so I stopped the whole regimen and it cleared up. I wonder which of these supplements caused that or was it the combo of them all? I may just re-start with the D3 and see what happens. Then begging to incorporate the others, any thoughts on this?

    Soctt, I'd suggest that you consider posting this question over at ch.com, where there are quite a few more people to notice it and where Batch often has something useful to say about observations regarding the treatment.  The thread's at http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/50

    I'd like to also suggest that bobb post his experience there, because one thing I know Batch and others are looking for is what combinations/interactions seem to limit D3's effectiveness.   

    Jerry


  15. Although just realized I bought "calcium carbonate" instead of "calcium citrate" but I saw that conversation somewhere and will look it up again to see if it's ok.

    You should be fine with the calcium carbonate. It's less buffered than the citrate, so you should take it with food.  It might be good to have those other minerals (magnesium, zinc) if they're not part of the carbonate formulation you bought.

    One thing you'll see if you're here for a while is that people with CH are in fact the primary "laboratories" where new treatments are tested, and most of what is known is the result of CHers "clinical trials" on themselves. In this case, the fellow who developed (or at least popularized) this D3 regimen, whose screen name is Batch, took calcium citrate.  So we choose not to wander too far from what he did.  It could be that the citric acid that's in citrate but not in carbonate has some benefit, along the lines of the recommended glasses of lemonade that Batch drinks.  All of that helps move your blood pH level from acidic to alkaline (yes, citric acid makes one more alkaline).  But if you have carbonate, I'd go with that, at least for now.  Some people have shown good results without any calcium supplements.

    When the time comes, if it does, for seeds/shrooms or whatever, it's also good to recognize that the knowledge is more fully developed, but is still being more fully understood. You'll see discussions here, for example, about what substances might block the effectiveness of psychedelics, how many seeds or grams or tabs is a "good" dose, etc.  Most of these things are being figured out based on CHers' experience, not laboratory science.

    That ongoing "experimentation" is one reason why the more that people stick around to report on their results, the better it is for everyone.

    My husband is going to help me with the oxygen.
      My daughter gets very good results with a simple O2 delivery system: 12-15lpm and a breathing tube.  But many people are now reporting quicker aborts using the O2ptimask and a demand valve system.  The demand valve is not cheap (I'm thinking it's in the $350 range, but I'm not positive about that), but if you can afford it, it could be a good long-term investment.  Similarly, for a relatively little additional money you can get a higher-flow regulator, which also seems like a wise investment.  There's information about where to get these things at the bottom of that "Oxygen Page" of mine (that I sent you a link to yesterday) in the Clusterbuster Files section of this board.

    Glad you're doing better!


  16. What else is there guy's?

    Some other things I can think of, which work sometimes for some.  Peppermint lip balm on the eyelid.  Sex (really--there's even a study of this), and other vigorous exercise, including for some people jogging.  Huffing cold air from an air conditioner (in the absence of more "normal" sources of oxygen from tanks).  For my daughter, when she could handle being touched I would "massage" her neck and shoulder and then circle my hands around her arm and run them down the arm with a firm pressure, kind of like trying to get the blood down into her fingers.  (Makes me cry, remembering, but it helped, or at least was a distraction.)


  17. Does ch.com still have a list of doctors by city?

    Ouch has a list: http://www.ouch-us.org/chgeneral/OUCH%20DOCS%20-%20US%203-2011.pdf

    These lists are of course not comprehensive -- just folks recommended by CH patients.  Here are the only ones from Indiana:

    Indianapolis:

    Dr. Robert J. Alonso

    Indiana Clinic Neurology

    Dr. Bette G Maybury

    Merrillville:

    Dr. Kathryn A. Hanlon

    Northern Indiana Neurological

    Dr.Larry Salberg

    Northern Indiana Neurological

    New Albany:

    Dr. Joseph F. Seipel

    CHfather... are you also a CH sufferer?I made an assumption based on your username I guess.Thought you were mainly here on behalf of your daughter.Very impressed with your knowlege... are you taking the D3/cal/omega 3?Is it working for you? 

    No, just her.  Wish it was me instead.  I'm sorry to say that I am very frightened of the famous CH "jinx" (say you're PF (pain free) and you might regret it). I think it's my only superstition.  So I will only say that my daughter started taking the D3 combo about two months ago, and that her expected spring/summer cycle (for many people who are "episodic," CH comes in fairly predictable cycles, often at a change of seasons) has not begun.  She has also been "maintenance dosing" with RC every couple of months.  We are hopeful, but prepared.

    My daughter, incidentally, is in her 30s.  Which makes me old enough to have the free time to learn whatever I can that might help her.  The thing about the D3 is that (a) a lot of people have benefited from it; (B) it's just a non-extreme supplement routine, almost certainly not dangerous in any way; © it's easy to implement; and (d) it doesn't -- as far as is known -- interfere with busting.  So for us, it's really "Why not?"

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