CHfather

This sounds like a situation that is sometimes described here. A reason to give indomethacin a fair try with treatment-resistant symptoms that seem to be CH. https://www.docguide.com/case-remitting-hemicrania-continua-seasonal-variation-and-clustering-diagnostic-confusion-cluster-he?tsid=5 A case of remitting hemicrania continua with seasonal variation and clustering: a diagnostic confusion with cluster headache (May 2019) Hemicrania continua (HC) is an indomethacin responsive primary headache that is characterised by a continuous strictly unilateral headache with periodic exacerbations. About 15% may have a remitting subtype of HC. Herein, we are reporting a 36-year-old man who had a 5-year history of episodic right-sided headaches. The headaches used to occur in a discrete series lasting 4-6 weeks, separated by pain-free remissions of 10-11 months. In each relapse, he had continuous background pain with superimposed exacerbations. The superimposed exacerbations were 1-2 attacks per day, lasting for 2-5 hours, and were associated with ipsilateral cranial autonomic symptoms. However, the patient did not respond to usual therapies of custer headache (CH). He had a complete response to indomethacin. We suggest that remitting subtype of HC may mimic CH. A therapeutic trial of indomethacin should be done in all strictly unilateral headaches that are not responding to other drugs.

'96, Suggest you get a sense of all your options. O2 is essential, but other strategies, like the D3 regimen and busting, can also make a big difference. Please see this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Note that Dave D says, "I'm one of the fortunate ones that have found success with O2 concentrators." Most people don't get real success with concentrators. In the file above, you can learn about (and further link to) welding O2 information. You shouldn't be denied by your insurance (unless it's Medicare, Medicaid, or another government program, which won't pay for O2 for CH), but welding is a good way to go.

Regarding the numbered files that Moxie mentions, they're a little hard to find since they've become a little scattered now. The key ones, along with some essential busting principles, are mentioned at the end of the file I linked you to on "Basic non-busting information," and they are also included in the banner notice at the top of each page that says "New Users -- Read Here First." In fact, what's at the end of the "Basic non-busting information" is exactly the same as what's in the "New Users" document.

D3 regimen is correct. Do that. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 (This is a slightly more direct link than the one Dana' gave you.) Sumatriptan injections can be split, or they can be prescribed in ways that allow for lower doses. Most people with CH can use 2mg to abort (6mg in the standard injector); some might need 3mg, but that's rare. Some people get it in vials, with syringes, so they can measure out their own doses; some people get injectors with lower mgs of sumatriptan; some people split their injections. For info about splitting injections, read this: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Oxygen at ~12 lpm isn't usually fully effective, particularly with a standard nonrebreather mask. It sounds like your wife is not getting very good aborts a lot of the time. Higher flow/better mask/better technique make a very big difference. You want her relying a lot less on triptans. It's widely believed here that they can cause rebound attacks, worsen attacks, and extend cycles, particularly when they are "overused." I'm willing to bet her verap intake is lower than it should be. People can need 960mg/day or more to treat CH; it's rare for docs to prescribe above 480. Also, immediate release works better than extended release. I'd consider starting Benadryl right now, 25mg four times a day (or what she can handle given the likely drowsiness). Pollen and other allergies can bring on or exacerbate CH attacks. You can read a lot more in this file, including the basics of "busting," which is what Dana' is referring to in the previous post. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Great people here. They'll help you. Thank you for being there for your wife!! (As a supporter, I know it's also partly for yourself, since we suffer in our own ways seeing loved ones go through this.) Please read this file

Just FWIW, Headache Australia says prevalence of CH there is about the same as US -- 1/1,000. Not sure whether that's based on any studies or just a projection a worldwide standard. https://headacheaustralia.org.au/headachetypes/cluster-headache/ There have been some studies of specific populations to assess the prevalence of CH. In one town in Norway, the prevalence was almost four times as high as in the US. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5909131/ >>Fischera et al. reviewed 16 population-based studies published up to August 2007, specifically looking at cluster headache prevalence in a meta-analysis and found that the 1-year prevalence varied greatly between the studies and ranged from 3 to 150/100,000. Their pooled lifetime prevalence was 0.12%.[6] The study with the highest prevalence found in this meta-analysis was the Vågå study in Norway where the principal investigator Sjaastad personally interviewed and examined 1828 inhabitants of Vågå. The study identified seven subjects with cluster headache, corresponding to a prevalence of 381 per 100,000 (95% confidence intervals: 153–783).[7] Since August 2007, there have been two further population-based studies, one from the Republic of Georgia with a prevalence of 87 per 100,000[8] and in rural Ethiopia with a prevalence of 1.3%.[9]<<

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.

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

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.

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.

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.

One of the first; still one of the best.

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.

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.

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.

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

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

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.

Yes. Agreed.

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

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

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.

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

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

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.

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.