Jump to content
ClusterBusters

CHfather

Master Members
  • Content count

    5,344
  • Joined

  • Last visited

  • Days Won

    224

Posts posted by CHfather


  1. Many of us have watched over the last few months as the situation of Michael (the Lionhearted, son of Bonkers) has worsened, and we know that Michael's about to go through a tough, tough detox from methadone without any help for his frequent, intense CH attacks.  (See hereabouts for more info about Michael's situation: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1265314831/637#637)

    We all hope and believe that in the long run this detox is going to make things better for Michael, but in the short run it's likely to be a very hard time for him, and for his loving dad, too. Most of us know how important the support from others here can be, and I'm suggesting (with Ron's approval) that we might each post here a message of support to Michael, so that he knows directly what we all know to be true -- that he's in our thoughts, our hearts, and our prayers; that he's not alone in this; and that the other side of it is going to be much better for him.  Ron has said that he will either encourage Michael to read these messages himself, or that Ron will print them out for him/read them to him.

    I'll post mine later, but I'm inviting others to go first.

    Thanks,

    Jerry


  2. Thanks, Cassidy.  Whatever the question was, you have answered it well.  I do have it from a reliable source, however, that occasional small doses of RC for sleeping will not interfere with the use of RC for busting.  (Of course, that probably depends on what "occasional" and "small" mean!)


  3. Great news, Zak!  Here's hoping we never hear from you again, except with occasional reports of your continued success and a brief report reassuring us that you have acquired oxygen, just in case.  If I were you, I would consider the maintenance dose of that D3 regimen, too -- half of what I recommended above. 


  4. Latest specialist appointment have suggested Neurontin.Does anyone know if this will affect the mushies, she has not taken it yet.

    Neurontin was also suggested for my daughter.  There's a 20-post thread here discussing it, though not directly in relationship to your specific question about mushies: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1300849393

    (I wish we had a better search engine here. I don't understand the limitations of the current one, but if you enter neurontin there it doesn't even take you to this thread, let alone whatever mentions of neurontin there might be elsewhere.)

    Has Booj tried the vitamin D3 regimen?  I'd definitely go that way before taking neurontin.  Here's something I just wrote about that regimen in another thread:

           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


  5. 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


  6. 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. 


  7. 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. 


  8. 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.


  9. 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


  10. 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                            


  11. 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.


  12. 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.)


  13. 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.


  14. 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.


  15. 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.


  16. 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.


  17. I love this sloppy and raw live electric version of Dylan's Idiot Wind 

    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.


  18. 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.


  19. 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

×