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CHfather

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Everything posted by CHfather

  1. 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
  2. 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 ( 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                  Â
  3. 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.
  4. 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.)
  5. 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.
  6. CHfather

    tune for 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.
  7. 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.
  8. 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.
  9. CHfather

    tune for you

    Nothing I like more than a sloppy and raw Dylan, but when I go to this place I see four vids that seem unrelated to what you said.
  10. 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.
  11. Thanks, guys! Hope you get some valuable responses . . . but at least it will add to the database.
  12. 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
  13. thanks, john. follow-up like this is always much appreciated.
  14. Thanks, ff. This can be really important information.
  15. Sending light and best wishes to Karla (and you, too, pal).
  16. 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 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!
  17. 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.)
  18. 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 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; ( 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?"
  19. My daughter's situation, after many years of misdiagnosis and mistreatment, is much, much better now, thanks to RC and oxygen. Which reminds me -- many people find that chugging a Red Bull, or some other "energy" drink loaded with caffeine and taurine, at the onset of a CH attack can help quite a bit.
  20. Solace, so sorry that you have to be here. You will find the best people here, ready to do their best for you. I'm going to skip almost all of your questions (leaving them to others) and suggest something pragmatic that you could do right now, which has helped a lot of cluster headache sufferers and is probably not contraindicated by other things you might be doing or conditions you might have. Since I'm not a doctor, there's a disclaimer here that maybe you should check with your GP first, although most people are doing this regiment without incident. As soon as you can, start taking about 10,000 international units per day of vitamin D3. You could take more (some folks take 20K IU per day), but high dosages for extended periods are not recommended. You should take it with food. You can take it all at once or in two 5K pills (or whatever denominations you can get). Also take calcium citrate tablets, which usually are formulated with magnesium and zinc (and maybe some other things, including a relatively small amount of additional D3). The recommended dosage of these is 2 or 3 tablets per day. You don't have to take them with food, but you can, of course. And also take Omega 3 fish oil capsules, roughly 2-3,000 mg per day. Others who are on this regimen also drink a glass of lemonade once or twice a day, with meals. There are substantial success stories here and elsewhere with using this method. You can read a great deal more about it in a long, somewhat complicated thread here: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/50 I recommend at least skimming that, because you see success stories and individual variants. There's also a thread here at Clusterbusters, with less detail but still worthwhile: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1300245052 As I say, this might not be the very best thing you could do, but it's simple, legal, and it has shown considerable effectiveness. Again, not being a doctor and specifically not being your doctor, I can't simply say that you should circumvent the system you're in and get oxygen, but that's sure what I would do. You can use welding oxygen without waiting for a prescription. For now, and in the long run, you should be familiar with the information contained here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 And you might order some RC (rivea corymbosa) seeds now (they're completely legal to buy and possess), just in case. www.iamshaman.com is a place where many people get them. Whatever you have (sounds like CH to me), I know how tough it can be to deal with all this information, while at the same time dealing with medical practitioners who probably have no real appreciation of what you're going through, and friends and loved ones who think you have "headaches," or at the worst "migraines." We will do our best to help you, but you should enlist others, too. (There are some videos at youtube which I can't bear to watch, having seen more than enough as I have sat up nights with my daughter, but which she says quite accurately portray what a CH attack is like. I'm not suggesting that you should watch them, but if people are doubting what you're going through, my daughter says they're quite a waker-upper for them.) My daughter was just saying last night how hard it is to have CH and take full responsibility for yourself. But you're in a helpful place here, as you'll see. And you're "lucky" to potentially be getting a relatively quick diagnosis and to have found the wonderful folks here who, as I can't say often enough, saved my daughter's life.
  21. Thanks for all you've done here, DD! Jerry
  22. Happy birthday, Bob, and thanks so much for all you have done for me and my daughter, personally, and for so many, many people. Jerry
  23. I was wondering about this adapter, and then I got this message from a knowledgeable and generous person: Here's the link to a site that sells the transfill CGA-870 to CGA-540 Transfill Adapter for $55 that will let you use the CGA-540 InGage™ 0 to 60 liter/minute regulator from Flotec with an E-size oxygen cylinder with post valve while on local travel. http://www.cumulus-soaring.com/mh-transfillers.htm It's part # 00GSE-1024-00 there. TA-870-Y Transfill Adapter Allow the connection of CGA-870 (medical-style post valve) cylinders and devices to connect to CGA-540 cylinders and devices. It can be used to connect a CGA-870 oxygen cylinder to a CGA-540 regulator.
  24. nice going, john, and thank you for letting us know in detail! that's a relatively low level of D3 (compared to what many others are taking) to be working such great results just curious about the licorice root -- did you mean 15-30 drops per week, as you said? does that mean you take a dropperful once or twice a week?
  25. CHfather

    tune for you

    plenty of good stuff from junkyard angels at youtube, too! e.g.,
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