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CHfather

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Everything posted by CHfather

  1. 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.
  2. CHfather

    Make this site as accessible as possible. :)

    Yes. Agreed.
  3. 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
  4. 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
  5. 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.
  6. 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
  7. 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
  8. CHfather

    Work and CH

    It's a small medical tank (E tank, I suppose) on a rolling stand.
  9. 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.
  10. 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&keywords=welding+oxygen+regulator&qid=1556763640&s=industrial&sprefix=welding+oxygen+%2Cindustrial%2C156&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.
  11. CHfather

    “Cure”

    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.)
  12. 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.
  13. 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
  14. CHfather

    “Cure”

    Thanks to LazyGrind, we can now add pooping to the list of "treatments," if not cures. Like you say, j'c', who knows (except that many of them have been tried, with mixed success).
  15. CHfather

    “Cure”

    I deleted this post, since I stupidly posted it before looking at the original post. I had just mentioned that the guy who posted the "urine" thread was one of the pioneers of busting. I shouldn't be in such a rush. BoF's post below is responding to my earlier, now deleted/revised post. Sorry.
  16. CHfather

    Becoming unmanagable

    You're probably referring to the mask that is made for people with CH, which is now called the “ClusterO2 Kit,” and which you can buy here: http://www.clusterheadaches.com/ccp8/. Many people say it helps speed up their aborts.
  17. CHfather

    Day-long low intensity episode

    Looks right. Gosh, there are a lot of ginger products!! Ginger juice, ginger shots . . . (Those latter two products are among many at amazon, but for some reason my amazon is unresponsive right now.)
  18. CHfather

    Day-long low intensity episode

    I would differ with this. Once the diagnosis is made, there are plenty of resources that list the evidence-based treatments, usually in priority order. I feel like they owe it to their patients to at least take those few minutes, particularly given the amount of suffering that CH causes. It feels to me like a professional responsibility of being a physician -- when you don't know what you're doing, you find out or make a referral. The candy that's been recommended is by Ginger People. It is very gingery. I think you can get crystallized ginger candies in the bulk sections of some grocery stores or health-food stores. There are probably plenty of fully satisfactory kinds.
  19. CHfather

    Day-long low intensity episode

    Your ginger candies might or might not be strong enough and gingery enough to give ginger a fair test. Strong tea is probably better, and you can add honey or other things to make it more candylike. Fresh ginger cut up and boiled is the best tea. Some people make it from powdered ginger, but that's a gloppy process. Many/most docs are a lot more comfortable prescribing meds than prescribing O2. Lithium is a ridiculous initial suggestion. The literature is clear that lithium is not advisable except for patients who are chronic, in part because the side effects are so undesirable and in part because stopping lithium often leads to severe rebound attacks. Topamax is less ridiculous, but not a whole lot less. I would encourage you to try to find a competent (regarding CH) neuro, which you're most likely to encounter at a headache center. Or. if your current doc is amenable to your suggestions and willing to consider your input, you could stick with him/her, because if you stay at this site you'll know as much as s/he does about CH meds, and about all s/he is good for is prescribing things you can't get for yourself. If some of the possible pharma treatment breakthroughs occur (e.g., if Lilly's new drug, Emgality, lives up to some people's expectations), you'll need a doctor to prescribe them if you want them. By then, you might be very effectively managing your CH with mostly-non-pharma treatments.
  20. CHfather

    Day-long low intensity episode

    There are a lot of apps available to doctors to look up medically-recommended treatments for conditions. One of the commonly-used ones is called UpToDate. In that app, it says (with citations to medical literature): "For patients with acute cluster headache, we recommend initial treatment with either 100 percent oxygen or a triptan, in agreement with national guidelines and expert consensus." I suppose the "or" in there can throw things off, but a rational discussion of efficacy, side effects, and other factors (cost, usage limitations) would lead toward O2, or, of course, both. The JAMA article with the O2 study is here: https://jamanetwork.com/journals/jama/fullarticle/185035. As I note here, there are reasons other than efficacy that seem to hold doctors back from prescribing O2.
  21. Can't really learn much from the abstracts, but I don't have access to the full articles . . . so just FYI: https://www.docguide.com/deep-brain-stimulation-modulates-hypothalamic-brainstem-fibers-cluster-headache-case-report?tsid=5 https://www.docguide.com/neurosurgical-treatment-craniofacial-pain-syndromes-current-surgical-indications-and-techniques?tsid=5
  22. CHfather

    Day-long low intensity episode

    Seems like you know that O2 will give you a much faster, much safer abort, so it's very much worth doing if the obstacles are surmountable. (Also, it's completely understandable that you haven't pursued this before, given the relative infrequency of your cycles). Not sure what you mean about "carrying" a tank. There are big heavy ones for home use and lighter carryable ones for portable uses. If you have an O2 supplier, they'll do the bringing of the O2 tank and the setup. It goes (or can go) on a rolling stand, if you feel like you have to move it around. Not all insurance claims for O2 involve fighting. I think of CA as being regulatorily enlightened, so it would be worth checking. The two-year old . . . .hmmm . . . maybe others can comment. Hard for me to see a potentially dangerous situation if you take normal precautions. The valve on the tank can be turned off quite tightly, and you can secure them on a stand so there's no risk of them falling on him/her.
  23. CHfather

    Boswellia Serrata

    So sorry, Freud. That's awful. By any chance is the O2 in your tank pretty low (1/3 or less)? Some people have reported that it works less well when the O2 is low. Wish I could say more about this, but of course it's anecdotal (happens to my daughter, for example, but she uses smaller welding tanks, so I don't know whether "low" in an 80 cu ft tank might have the same effect as "low" in a bigger tank).
  24. CHfather

    Day-long low intensity episode

    Very hard for me to think of a reason for this. The oral triptan is doing virtually nothing for you. You might be taking too much of it, but your doctor is an idiot if s/he's giving you an oral triptan and no O2. I'd suggest taking a look at this post. There are some thoughts about aborting attacks when you don't have the right stuff, and (at the end) some suggestions regarding ginger, which might help you with what's going on now (even if it's not typical "shadows"). https://clusterbusters.org/forums/topic/6213-a-bunch-of-basic-non-busting-info/?tab=comments#comment-61582 Thank you for this information. I have added it to the list of triggers that is here: https://clusterbusters.org/forums/topic/4568-triggers/. Is it possible that you're eating a lot of MSG during these periods -- that's a big trigger for many people.
  25. CHfather

    Boswellia Serrata

    Doing a little more looking around on this topic, I see that that boswellia serrata oil is more commonly known as frankincense. There are a few posts here (that you can find using the search bar) about frankincense, mostly kind of favorable. How nice to have such a thoughtful neuro!!
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