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Posts posted by CHfather

  1. Hope she is painfree now.

    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.

  2. 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.

  3. 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.


    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.

  4. 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?

  5. kaboom, you sent me to the internet, because i had been wondering just what calcium citrate is and how it's different from just calcium, or calcium carbonate.  i'm inclined, in terms of this D3 regimen, to do as exactly as possible what Batch has recommended (citrate) and what has worked for others (citrate). . . but according to most sites, including the Office of Dietary Supplements at the National Institutes of Health, there's just not much difference between calcium citrate and calcium carbonate in any essential way.

    Here's what the NIH site (http://ods.od.nih.gov/factsheets/calcium/) says:

            >>>The two main forms of calcium in supplements are carbonate and citrate. Calcium carbonate is more commonly available and is both inexpensive and convenient. Both the carbonate and citrate forms are similarly well absorbed, but individuals with reduced levels of stomach acid can absorb calcium citrate more easily. . . . . The body absorbs calcium carbonate most efficiently when the supplement is consumed with food, whereas the body can absorb calcium citrate equally effectively when the supplement is taken with or without food [7]. . . .

            Some individuals who take calcium supplements might experience gastrointestinal side effects including gas, bloating, constipation, or a combination of these symptoms. Calcium carbonate appears to cause more of these side effects than calcium citrate [1], so consideration of the form of calcium supplement is warranted if these side effects are reported. Other strategies to alleviate symptoms include spreading out the calcium dose throughout the day and/or taking the supplement with meals.<<<

    Two other things that I came across: (1) >>>Regardless of the form of calcium you choose, remember that the more your doses rise above 500 mg per dose, the less calcium your body will actually absorb. Your best solution: Avoid taking more than 500 mg per dose. If your recommended daily intake is 1,000 mg, for example, divide that into at least two doses taken over the course of the day. . . . And why do so many calcium supplements contain vitamin D? This vitamin aids the body in absorbing calcium.<<<  This one's from the Walgreen's pharmacy website: http://www.walgreens.com/marketing/library/ask/aap/vitaminsherbssupplements/vitaminsherbs_calciumcitrate.jsp

    (2) >>>Calcium citrate is basically calcium wrapped with a covering derived from citric acid.<<<  So it might be that the citric acid adds a bit to the supplemental citric acid/lemonade part of Batch's recommended regimen, and that's why it's preferred.

  6. brent, i'm just guessing here, and i don't know what a cga540 connector is, but i think flotec is noted for sophisticated equipment, and they do list some high-flow meters:  http://www.floteco2.com/

    and lifegas sells high-flow regulators and also sells the o2ptimask, so maybe you'd find something there:  http://www.lifegas.com/gas_devices_and_therapies/special_oxygen_needs.asp

    here's another possible place:  http://madamedical.com/merchant.mv

    like i say, just guessing here . . . hope it helps.

  7. kaboom, you're asking a different question, which i think the greatly helpful wishbone has probably answered as well as anyone can, but i just scanned back over your posts in this thread and i see you mention a calcium/magnesium/zinc supplement.  i don't know how much difference it might make, but (as wishbone mentions) it's calcium citrate that's recommended.  i think that ca citrate usually comes with magnesium, but i don't know about the zinc--just checking to be sure you're taking the recommended things.

    also, i picked up some pH test strips at a local nutrition store the other day, and if you can get some they might tell you how you're doing in terms of becoming more alkaline, less acidic, which is what the supplemental lemonade/lemon juice is supposed to support in addition to the other elements..  (pH strips are also available online here: http://www.phionbalance.com/ph-balancing-products/ph-test-strips)

    i also picked up some drops that are supposed to help move one more to alkalinity -- the ones i got are called "alkamax."


  8. Thanks, Lt2.  Here's part of a report about a striking study from 2000.  I just can't figure out all the intriguing questions.  Others might know how it's been followed up.  I have been wanting to get my daughter to a sleep-disorder doc.



    ANN ARBOR, MICH--Patients with cluster headaches frequently have undiagnosed sleep-disordered breathing, a recent study has found.[1]

    "The key implication of the study is that physicians should consider the possibility of obstructive sleep apnea in patients with cluster headaches because sleep-disordered breathing appears to be common in these patients," Ronald D. Chervin, MD said in an interview with RESPIRATORY REVIEWS. "Preliminary evidence suggests that treating obstructive sleep apnea can improve symptoms in patients with cluster headaches," he added.

    Dr. Chervin and colleagues in the Sleep Disorders Center of the University of Michigan in Ann Arbor conducted an observational study to evaluate patients with active or inactive cluster headaches for occult sleep-disordered breathing. Before the start of the study, none of the 25 subjects had been given a diagnosis of sleep-disordered breathing. The researchers performed polysomnography on all subjects, and they monitored end-tidal carbon dioxide and esophageal pressure in 22 and 20 patients, respectively.

    Eighty percent of subjects were found to experience more than five episodes of apnea and hypopnea per hour of sleep, and 44% had 10 or more of these events per hour. Minimum oxygen saturation was less than 90% in 10 subjects. Maximum negative esophageal pressure ranged from -13 to -65 cm H2O, and the maximum end-tidal carbon dioxide level was 50 mm Hg or higher in eight subjects. Patients who reported that their cluster headaches typically occurred in the first half of the nocturnal sleep period had more severe oxygen desaturation than did the subjects whose headaches started later.

  9. Kika, the answers to all your questions are here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130612

    But I will "summarize."  No one can be precise about this, since there are so many variables, including the unpredictable potency of the seeds, which is not related only to their freshness.  The study that was done by Dr. Sewell and others (using HBWR seeds) showed that seed LSA contents vary greatly, and that the only people who didn't benefit from the seeds were those who got too little LSA from them.  At the same time, you personally (like most people here) want a dose that has very little, or no, psychedelic effect.  The problem with starting with 4-8, or even 10, is that you know you're almost certainly not getting enough LSA to affect CH, so you're going to be taking more the next time when you really want to bust.  But starting with 10, and having no effect (which seems very nearly a certainty) will, I suppose, give you the confidence to try more the next time.  My daughter started at 10 and wound up at 60, still with no psychedelic effect.  So I'd say to go ahead with 10.

    Mortar and pestle is good.  Soaking for one or more hours in water (spring water or bottled water are slightly but not vitally preferable to tap water) at room temperature is fine. An ounce or two of water.  You will have to choose whether to drink the sludge or strain it out.  With a dose of 10, I'd recommend drinking it.  Some people find the taste vile; my daughter and I found it completely tasteless.  You can drink cold water, orange juice, cranberry juice right after to wash away the taste.

    Given your concerns and the possibility, however remote, of significant psychedelic effects, you should be attentive to "set and setting" as you do this.

  10. Ron, this feels like butting in, but ... Since, as Les says, methadone withdrawal is brutal, often considered more difficult than heroin withdrawal, are you involving an addiction specialist in any direct way?  Have you considered some kind of in-patient setting?  I can't imagine anyone who would care for Mike more devotedly than you, but is this far enough beyond your skill level that professionals should be more directly involved?  You don't have to answer these questions, but I felt I had to ask them.  I completely understand that you're both at the end of your ropes, and it breaks my heart because I have come to admire you so much and care so much about you, but ought you to give it one more look before you act?

  11. Is this a schedule one drug as well???
    since you're winking, i guess you know the answer, which is yes.

    from wikipedia:  MDMA (3,4-methylenedioxymethamphetamine, Ecstasy), which continues to be used medically, notably in the treatment of post-traumatic stress disorder (PTSD). The medical community originally agreed upon placing it as a Schedule III substance, but the government denied this suggestion, despite two court rulings by the DEA's administrative law judge that placing MDMA in Schedule I was illegal. It was temporarily unscheduled after the first administrative hearing from December 22, 1987 - July 1, 1988.[23]

  12. Wishbone, it's great of you to add so much knowledge to this topic. Thank you!  I see that Batch recently posted a list a alkaline-positive foods.  The lemonade seems to work well for people, but it seems (correct me if I'm wrong) to be a proxy for a truly alkaline-positive diet, kind of an "alkaline pill."  Nothing wrong with that . . . and here's the link that Batch posted to a list of alkaline vs. acidic foods.  http://www.i-amperfectlyhealthy.com/acid-alkalinefoodlist.html

    On a personal note, I've been doing D3 at 5K IUs, and I like it.  But I've been having some muscle tightness, which may be because I've left out the Ca Citrate.  So I'll go get some, and thanks for the explanation.

  13. The question here, as I understand it, was what medical conditions tend to occur simultaneously with CH and migraine, and which are more typical of CH.  The answer (full text of the abstract is below):

    >>>>>Chronic sinusitis (p = 0.001), malignancy (p = 0.012), diabetes mellitus (p = 0.021), glaucoma (p = 0.038), as well as another primary headache disorders were more frequently present in patients with cluster headache (p = 0.001), than in migraine patients. In the multivariate analysis, chronic sinusitis (OR = 7.6, p = 0.001) and diabetes mellitus (OR = 4.2, p = 0.035), adjusted by gender, age and duration of headache, are more frequently associated with CH than with migraine. Comorbid disorders in CH patients were frequent and similar to those noticed in migraine patients, except chronic sinusitis and diabetes mellitus.<<<<<

    Batch was kind enough to inform me about this study in a reply to my first-ever post over at ch.com, and I will tell you what he had to say about it:

    >>>>>The interesting thing about the comorbid disorders we've noted with respect to the anti-inflammatory regimen is they all have the potential to lower arterial pH.

    The sinusitis reported by Zidverc–Trajkovi JJ et al. is also of interest as it may be an indication of an inflammatory reaction that could easily encompass the sphenopalatine ganglion and possibly spread to the trigeminal ganglion as the two nerve bundles are directly connected to each other by a branch of the trigeminal nerve.

    What all this points out to me, is that as cluster headache sufferers, we need to make sure a more holistic approach is taken in treating our disorder to include looking at other comorbid disorders that can easily prevent CH medications from working effectively.  In short, unless the comorbid disorders are treated at the same time, it's entirely possible the medications prescribed for our CH will not have the desired therapeutic effect.<<<<<

    In part, he's trying to sort this out in relationship to his D3/O-3/CC-based regimen, which (along with the lemonade) is partly aimed (as I understand it) at lowering arterial pH.

    His post is at http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1299970139/7#7

    Comorbidities in cluster headache and migraine

    2011, N° 1 (Vol. 111/1) p.50-55

    Jasna J. Zidverc-Trajkovic, Tatjana D. Pekmezovic, Ana L. Sundic,Aleksandra P. Radojicic1 and Nadezda M. Sternic

    Headache Center, Institute of Neurology and Institute of Epidemiology Clinical Center of Serbia, Faculty of Medicine,University of Belgrade, Belgrade, Serbia


    The aim of this study was to investigate the most frequent comorbid diseases occurring in patients with cluster headache (CH) and, for comparison, in migraine patients. Over a period of eight years 130 patients with CH and 982 patients with migraine were diagnosed according to ICHD-II criteria. In all patients the presence and type of different diseases were assessed from medical records and coded by the ICD, X revision. Odds ratios (OR) with corresponding 95% confidence intervals (95%CI) were calculated by logistic regression analyses. Comorbid disorders were present in 56.9% patients with CH and in 56.7% migraine patients. Chronic sinusitis (p = 0.001), malignancy (p = 0.012), diabetes mellitus (p = 0.021), glaucoma (p = 0.038), as well as another primary headache disorders were more frequently present in patients with cluster headache (p = 0.001), than in migraine patients. In the multivariate analysis, chronic sinusitis (OR = 7.6, p = 0.001) and diabetes mellitus (OR = 4.2, p = 0.035), adjusted by gender, age and duration of headache, are more frequently associated with CH than with migraine. Comorbid disorders in CH patients were frequent and similar to those noticed in migraine patients, except chronic sinusitis and diabetes mellitus.


  14. Yury, I don't think this question has been fully answered yet . . . but it seems like you can try it without detoxing.  The thread over at ch.com is long and winding, but clearly there are folks having success with D3 while using some conventional CH meds, such as verapamil.  What levels of D3, O-3, and calcium citrate are you planning to take?

  15. There's a little more information, including this >>>It's unclear what the underlying mechanism may be, says Dr. Hakim, but it's unlikely to involve any direct anti-inflammatory action. "An apparently more plausible hypothesis may be related to vitamin K," he suggests, "which seems to exert biologically relevant actions on dendritic and neuronal metabolism."<<< at http://www.medbioworld.com/news.php?topic=0&article=20110422clin010.xml

    This is of course follow-up to an earlier "accidental" observation about warfarin for CH and a small follow-up study: http://www.ouch-us.org/medications/warfarin.htm

  16. also and no offense on this one, BUT  DUHHHHHHHHHHHHHHH

    A drug that makes you feel happy and euphoric is helping people with PTSD wow, who would have thought it.

    Jl, what you're suggesting here is the same as what many uninformed people think about the use of psychedelics to treat CH -- that somehow you "trip" and that makes you unaware of the pain (or something).  This article previously posted by shocked presents a different picture about MDMA and PTSD: http://www.oprah.com/health/PTSD-and-MDMA-Therapy-Medical-Uses-of-Ecstasy/8

    I'm not loving the tone of this thread, and I'm not surprised that you might be feeling kind of defensive, and of course you're right that "PTSD is no cluster headaches" . . . and at the same time, maybe there's something for all of us to learn from this.

    This tangent is mine . . . You write,

    I may have some PTSD if this ever goes away though
      I've said here, and 1961mom has said more eloquently, that something a lot like PTSD is probably very common among people who suffer from CH.  I don't see how it couldn't be, and of course what makes it so much worse is that while maybe "typical" PTSD arises from past incidents that can be assumed not to be highly likely to happen again, CH is all too fecking likely to happen again.  So I suspect that most conventional forms of PTSD therapy (like the one described in that article) will not help CH sufferers much.  But if something helps my daughter and you and the folks here and elsewhere to cope with what I see as the many PTSD-like challenges of living with CH, I'm all for learning more and assuming less.
  17. which of course ruined my detox which I was doing in prep of dose

    Thank you, wb, for this post.  All information is helpful.  I'm just curious about whether you dosed at all during this cycle.  Doesn't sound like it, but I wanted to be sure.

    I am not a superstitious guy, but I do fear the fecking jinx, so I won't say anything more.

  18. yury, my daughter was once prescribed clonazepam for her CH, so i did some looking into it.  i don't claim to be an expert, but here's what i found.

    in a couple of very small, quite old studies, clonazepam was considered an effective treatment for cluster headaches (in one case, combined with lithium).



    but today, from what i have read, it's only an "exceptional" treatment in limited circumstances, for example: http://www.ncbi.nlm.nih.gov/pubmed/18563291

    it's more effective for trigeminal neuralgia.  it's an anticonvulsant/sedative,anti-anxiety drug, so, yes, it might "calm you down."  some people with CH have taken it for sleeping problems, but i've never seen anyone say it helped their CH. 

    it's not listed at all in the european standards for treatment/"prevention" of CH, at least as i read those standards: http://www.guidelines.gov/content.aspx?id=10471

    as mystina said, and as is reinforced in the wikipedia page she linked to, abruptly quitting clonazepam can lead to nasty withdrawal symptoms.

  19. Sound ok? 

    Scott, not sure if you're asking me . . . and not sure I know the answer.  From what I've read at the ch.com thread, people experiment with D3 dosages between about 15000IU and about 7000IU, depending on their tolerance and also the perceived effectiveness.  So, you're at the lower end there, but not far from the 10000IU that seems to be the norm. 

    The calcium that's recommended there is "calcium citrate."  Don't know whether that's the same as what you're taking, though it is apparently often formulated with magnesium and zinc (and some added D3). In one of his posts at ch.com, the popularizer of this regimen, Batch, says this:

    >>>I had originally attributed several week long CH remissions to a buffering regimen of calcium citrate tablets that also contained vitamin D3, magnesium and zinc washed down with homemade lemonade...

    However, upon review of my logs I found there were two more factors that came into play during three of these remissions. The first was increasing the dose of the calcium citrate tablets up from three to four/day.  The other was two of the week-long CH remissions occurred while I wasn't taking the calcium citrate tablets but I was taking the Omega 3 Fish Oil while spending a good bit of time outside in direct sunlight wearing shorts and tank top working in the yard.

    I connected the dots last October while I was here in Bremerton, Washington working on the house.  I realized that the CH remissions I'd attributed to the calcium citrate and citric acid buffer were more than likely due to the increased level of vitamin D3 from sunlight so I stopped by Costco and picked up a bottle of 2,000I.U. softgel capsules and started dosing at 10,000I.U. a day along with three of the 1000mg Omega 3 Fish Oil softgel capsules. . . . <<<<

    Here's a link to that post, or the general vicinity of it; it's reply #37 on this page: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/25

    In several other places in that thread, Batch also says that he attributes the effectiveness to the D3/fish oil (or even just the D3 itself).  So I'm not sure what the citrate adds -- but I suppose there's no reason not to take it.

    He also talks in that thread about lemonade/margaritas (!) as a regular strategy to change his pH.

    Looking forward to hearing how this works for you -- hope it's great!!!  Oxygen will be very good, too: That I know.

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