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Everything posted by CHfather

  1. CHfather


    Well, don't keep it a secret, Dave. What is it? (I think you mean lower lpm rates (flow rates), right?) For most people, spending $250-500 for a concentrator is definitely not the right way to go, when a pretty glorious setup using welding O2 would be possible at the lower end of that range, but if it works for you, that's what matters.
  2. CHfather

    Doctor list

    There are several Ohio doctors on the list, and i think of Columbus as "central." Don't know about the other places. This list is pretty old. The list doesn't copy and paste readably, but you'll find Ohio in here: https://clusterbusters.org/wp-content/uploads/2014/10/OUCH-DOCS-US-07-22-14-NC-OR.pdf OSU has a headache center: https://wexnermedical.osu.edu/find-a-doctor/ann-pakalnis-md-1500
  3. CHfather


    flabbergasted, too, and agree with jon' about welding O2. Pertinent info here: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ it is generally argued that purity issues re O2 from welding suppliers are not real. many folks with CH use O2 from welding suppliers. medicare doesn't cover O2 for CH, so i suppose supplementals won't either. but why they won't fill a script with out-of-pocket payment, i don't know.
  4. CHfather

    Shadows back from pizza

    Pizza-related things that have MSG: Some places/chains add it to the sauce; Italian sausage almost always has it (lots of it); pepperoni and other meats sometimes; anchovies (naturally-occurring MSG); parmesan (natural).
  5. This is frustrating, and the background to the men/CH - women/migraine diagnostic pattern is undoubtedly rooted in some biases and some defective assumptions acquired during medical training. It does turn out, also, that women with CH report more "migrainous symptoms" than men, and that's probably part of the reason for the misdiagnosis. I don't think your "worst case" dread is unusual or irrational. Since there's no good explanation for CH patterns, there's also no rational explanation for why they wouldn't slowly or suddenly become worse. But experience shows that most people don't become chronic, and most people with chronic CH don't find it to be untreatable. Roughly one in eight people (13%) who start out with episodic CH shift to chronic CH. Yes, for some people who have chronic CH, it turns out to be resistant to treatment. I don't know what percent that is, but I wouldn't put it at more than five percent (probably even lower if we go with your "resistant to all therapies" as opposed to "resistant to conventional therapies" -- busting, ketamine, D3, and other treatments have been beneficial to many people whose CH was resistant to more "conventional" therapies). So your wife's likelihood of developing chronic CH that is resistant to all therapies is (based on my guess about intractability) something like 13% x 3%, or roughly .4%. Given advances in treatment, I'd say she's considerably more likely to have an essentially painfree life a few years from now than to be living in your worst-case scenario. 3 hours ago, Mjedwards409 said: >>When I really stop to think about it, there are likely thousands of episodic CH sufferers that only get hit once per year, once every few years, get a few CH per day, etc that never even bother to register for a forum or post. Would you all agree/disagree with that?<< There are about 400,000 people in the US alone with CH. How many participate here, at CH.com, or in Facebook groups? A few thousand, overall? Small fraction, in any event.
  6. CHfather

    Just diagnosed with clusters

    Mrsk', Please start by clicking on the blue thing at the top of this page that says "New Users - Read Here First." For non-busting info that might be helpful to you, please read this thread: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ The great folks here will be happy to answer any questions, but it's best if you start with that knowledge base.
  7. CHfather

    Happy birthday Dallas Denny

    One of the first; still one of the best.
  8. CHfather

    D3 clarification help

    Click on this link: https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Go to the bottom of the sixth page, which is page #2 in the second section. You'll see a chart there with the ingredients you need to take. Right under that, at the top of the next page, it shows the specific Kirkland brand supplements you can buy at Costco to get all the ingredients. If you're not a Costco member, you'll have to figure that part out for yourself, or maybe someone here will tell you where they get theirs. I'm surprised you couldn't get 5,000IU or 10,000IU D3 near where you live. I think most drugstores have at least 5k. You'll have to find them (there are tons of them at amazon and other online sites) or else you will indeed be taking a lot of pills, particularly if you do the "loading" approach at the beginning, where you take considerably more than 10,000IU per day. Batch recently mentioned a 50,000IU water-soluble D3 pill that he likes. It is something like 95% certain that your D3 is low by medical standards, and very low by the standards of what you need to deal with CH. The great people here have lots of experience. I'm sure they'll help you. And you might get an online visit to your thread from Batch himself.
  9. CHfather

    Round 2.... fight !

    Welcome, A.j. You might start by taking a look at this post: https://clusterbusters.org/forums/topic/6213-a-bunch-of-basic-non-busting-info/ Follow up, of course, with any questions you have.
  10. CHfather

    New here but not new to the evil!

    I understand why you might feel like you're at wit's end. This sounds really awful. Not a doctor here, but it doesn't really sound much like cluster headache. Among other things, CH is not a 24/7 thing, and the pain tends to be most intense around an eye, and they can be brought on by stress or exertion but also have a life of their own. And they're virtually never helped by an NSAID like Toradol. There's a condition called cervicogenic headache (originating in the neck) that of course does seem to match up, although maybe the MRI etc. ruled that out. https://www.medicalnewstoday.com/articles/324108.php Hemicrania continua (HC) is another possibility, since it is 24/7, but again the symptoms and causes don't really seem to fit. The Indocin is probably meant to treat a hemocrania as a possible cause, but that's quite a low dose. Maybe the doc is being cautious and will increase the dose. (Many people get significant stomach distress from Indo, so it's often prescribed with something to protect the stomach lining.) Indo is essentially a stronger version of Toradol. https://americanheadachesociety.org/wp-content/uploads/2018/05/Hemicrania_Continue_June_2015.pdf The verapamil dose is also low for CH, but again, it's good medical practice to start low, monitor, and increase (people with CH can sometimes need 960mg/day or even more). (Anti-inflammatories like Toradol and Indomethacin might also be prescribed for cervicogenic headache, and of course the steroid injection is for anti-inflammatory purposes.) Of course, if O2 might have helped in the ER, and if the doc thinks you might have CH, then O2 is worth trying and should be prescribed. Prednisone is also sometimes prescribed as a temporary treatment for CH, and it seems to me that it might also be tried, since it's an anti-inflammatory. I apologize for being picky here, but while "cluster migraine" is a term that has been used by doctors and lay people, it's nearly meaningless as a medical term and has been pretty much abandoned. A person either has CH or has migraines (and some people have both), but they don't have "cluster migraines" unless they have symptoms of both at the same time enough that the diagnosis is too blurry to make. That's very, very rare.
  11. CHfather


    griv', you might want to take a look at this file: https://clusterbusters.org/forums/topic/6213-a-bunch-of-basic-non-busting-info/
  12. CHfather

    Chronic Cluster Patient Pain Free for 11 days

    Thank you. Very kind of you to come here and share this.
  13. CHfather

    Make this site as accessible as possible. :)

    Denny, You, spiny, THMH, and Jeebs could never lift another finger here and your contributions would still be immeasurable. I know that's not the subject here,. I just wanted to say it.
  14. CHfather

    Make this site as accessible as possible. :)

    Yes. Agreed.
  15. CHfather

    Describing CH to non-believers

    FWIW, some years ago I put together these docs for CB for the purpose of sharing with family, co-workers, etc. A lot of tears while creating the first one. Living with CH - 8.5x11 - 9-15-14.docx 20 Facts brochure 8-24-13.docx
  16. CHfather

    Describing CH to non-believers

    FWIW, that recent big study of people with CH (more than 2500 respondents) asked people to rate the pain of conditions they had experienced. I can only paste in the data here. Column 1 is the "minimum" rating on a 1-10 scale (not sure what that really means here), 2 is the maximum, 3 is the average. I think one reason I can relate a little to the CH experience is that I had pancreatitis (second-highest average rating after CH; ahead of childbirth) of unknown origin for several years (one long bout and then frequent shorter ones). It was agonizing, and no doctor could figure out what was causing it or what to do about it. Finally I correctly self-diagnosed the cause: MSG! So, some similarities as I say to the CH experience, but still nothing like the pain level. (This self-diagnosis (which was accurate) is one reason why I'm adamant about asking people whether MSG might be some kind of trigger for their CH attacks, and why I compiled the "triggers" doc in the CB Files.) Cluster Headache attacks 0.00 10.00 9.58 Child birth 0.00 10.00 7.21 Migraine 0.00 10.00 5.61 Shingles 0.00 9.40 4.59 Broken Bones 0.00 10.00 5.23 Heart Attack 0.90 10.00 5.07 Herniated Disk (i.e. slipped disk) 0.00 10.00 6.16 Arthritis 0.00 10.00 4.04 Sciatica 0.00 10.00 5.10 Kidney Stones 0.00 10.00 6.87 Gall Stones 0.00 10.00 6.30 Pancreatitis 4.00 10.00 7.45 Fibromyalgia 0.00 10.00 5.64 Spinal Tap 0.00 10.00 4.61 Gunshot wound 1.00 9.00 5.89 Stab wound 0.00 9.00 4.59 Biopsy (Kidney, Spleen, Liver, Bone Marrow or other major organ) 0.10 10.00 4.67
  17. CHfather

    Make this site as accessible as possible. :)

    This isn't completely responsive to the previous posts -- just thoughts on the general topics. The rationale for not discussing busting at the general board has been to protect the posters, since search engines find things on the (open) General Board but don't find things on the closed boards. From some quick searching I did this morning, that still seems to be true, though maybe less so than it was at one time. (Incidentally, for those who want general anonymity, I'd recommend not using a username here that you use elsewhere.) Also, in a quick search using [mushrooms cluster headache], CB shows up on the first page -- it's a link to a subtab under "Cluster Headache" at the CB home page. When I use [seeds cluster headache] and [lsd cluster headache], the results are similar -- a page from that same subtab is among the first things that come up. I don't know enough about SEO to know whether more could be done to attract people with CH looking for general treatment options. The core files about busting -- the numbered files created by the great tommyd quite a few years ago -- still have good information, but they're outdated enough in some regards (dosage and blockers, for example) that you wouldn't really want people acting on it without checking in first. Until we have something up to date, I don't know what people would be referred to. The basic busting rules are extremely simple, but the nuance is a little tricky. (Interestingly to me, there's no discussion in tommyd's materials about slapbacks: I wonder if that hadn't been recognized then.) Growing is a different question, and I don't really follow posts about that subject very carefully, but it seems like the most important help in that regard is also in the nuance, not the basics. As Miz' suggests, when I first came here, in 2009, I was in a complete panic. There was a lot less to wade through then, but it still felt like too much! At the same time, TBH, there were a lot more people willing to do a lot of hand-holding (first-generation pioneers whose own lives/sanity had been saved and who were not just willing but anxious to pay it forward). I definitely think, as I have said elsewhere, that we need a "Read This First" section, but I'm not sure, as I have also said, how much difference it would make.
  18. CHfather

    Work and CH

    there are stands, too, that hold multiple tanks. and i'm gonna say with great confidence that a full m-size welding tank (let's say 120 cu ft) weighs a whole lot more than 32 pounds. more like twice that, i'd bet. here's info for a 40 cu ft empty welding tank (30 lbs): https://www.amazon.com/Steel-Oxygen-Cylinder-CGA540-Valve/dp/B01E2T4V2W/ref=pd_sbs_469_22?_encoding=UTF8&pd_rd_i=B01E2T4V2W&pd_rd_r=ead8bfb9-6d2d-11e9-a9d7-63c732323a12&pd_rd_w=omtpf&pd_rd_wg=f455F&pf_rd_p=588939de-d3f8-42f1-a3d8-d556eae5797d&pf_rd_r=5RY00T8K50PYV2B5MX1S&psc=1&refRID=5RY00T8K50PYV2B5MX1S#productDetails
  19. This is not "news," really. It's a ten-plus year-old report. But I hadn't seen it or had forgotten about it, and it's relevant to discussions that take place here: Objectives.—To document the relationship between the use of subcutaneous (SQ) sumatriptan (sum) and a change in frequency pattern of cluster headache (CH) in six patients. To discuss the clinical and pathophysiological implications of this observation in the context of available literature. Background.—Treatment with SQ sum may cause an increase in attack frequency of CH but data from literature are scant and controversial. Methods.—Six CH sum-naïve patients (three episodic and three chronic according to the International Headache Society (IHS) criteria) are described. Results.—All six patients had very fast relief from pain and accompanying symptoms from the drug but they developed an increase in attack frequency soon after using SQ sum. In all patients, the CH returned to its usual frequency within a few days after SQ sum was withdrawn or replaced with other drugs. Five patients were not taking any prophylactic treatment and SQ sum was the only drug prescribed to treat their headache. Conclusions.—Physicians should recognize the possibility that treatment of CH with SQ sum may be associated with an increased frequency of headache attacks. http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.2004.04132.x/abstract
  20. CHfather

    Work and CH

    It's a small medical tank (E tank, I suppose) on a rolling stand.
  21. CHfather

    Dr. Todd Rozen

    There are small studies of sodium oxybate for CH. As I understand it, it works by affecting sleep patterns (it's described in one place as being like "sedative hypnotics with significant central nervous system depressant action"). https://www.ncbi.nlm.nih.gov/pubmed/21613599 I see that a clinical trial was supposed to take place in 2015, but doesn't seem to have gone forward. I don't see much about it since 2011. You could google "sodium oxybate" "cluster headache". There are some old threads about it at this board (put "sodium oxybate" (in quotes) into the search bar at the top of the page). I'd imagine you're likely to find more about it by searching at clusterheadaches.com.
  22. CHfather

    Tubing and syringe sizes

    Miza', I'm not sure you really need that expensive of a regulator. There are a bunch at amazon that already come with the adapter (or at least it appears that way from the pictures). This one, for example, makes sense to me: https://www.amazon.com/PSI-KING-Welding-Oxygen-Regulator/dp/B01DAYCJWO/ref=sr_1_5?crid=2DOJUIMBLZXIH&amp;keywords=welding+oxygen+regulator&amp;qid=1556763640&amp;s=industrial&amp;sprefix=welding+oxygen+%2Cindustrial%2C156&amp;sr=1-5. I also feel very confident that the ClusterO2 Kit tubing is standard size and will fit on that adapter. But you might want to be sure this is confirmed by someone else. If you are going to get the regulator you mentioned, it does look like that Dixon adapter will be fine. Less expensive plastic ones are available at amazon and at many hardware stores. As for the syringes, someone once posted this here: "1ml "insulin" syringes with thin 33-gauge needles work great. Don't let your doc or pharmacist try to convince you that you need a larger gauge for "draw up."" That's the only thing I remember seeing about syringe size, and I don't know anything about your other question regarding using a vial more than once. A lot of people get aborts from 2ml. Suggest you also consider getting a smaller O2 tank for portability. 40 or 60 cu ft. And you might want some kind of rolling stand for that big tank.
  23. CHfather


    Reminds me of Woody Allen's joke, "Sex isn't dirty, unless you're doing it right." As I recall, one or two posters have suggested that not actually completing the act is the secret to stopping an attack. So actually doing it "wrong" might in fact be the secret to doing it "right." (This might also be within the posted materials, but I'm not going to look.)
  24. CHfather

    First time posting

    LazyG', I have a (pinned) post over in the ClusterBuster Files section about "non-busting" topics related to CH. I'd suggest you look at that for a sense of the landscape. Denny's post in that same section (also pinned) will lead you to info about busting.
  25. CHfather

    First time posting

    There are some threads here about Emgality. Put it in the search bar (top right of the page) and you'll see them. Emgality is only expected to work for people with episodic CH, not chronic, but from your description, you might not meet the specific definition of chronic. It's not likely that O2 ended your cycle. Doesn't really do that (but since CH is pretty different for everyone, I wouldn't state that as a certainty). Check out the D3 regimen; it has helped hundreds: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708