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CHfather

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Everything posted by CHfather

  1. CHfather

    Hemicrania that mimics CH

    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.
  2. CHfather

    Newb here

    Jost, there's a lot of information in this file about oxygen and other strategies: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ The vitamin D3 regimen is another thing that you really need to try.
  3. That's horrible. So sorry!!!!!!!!!!!!!!!!!
  4. CHfather

    Newb here

    Yes. In fact, you're lucky -- a lot of people have a lot of dental work, sinus surgeries, TMJ treatment, and other useless stuff done to them before they are accurately diagnosed. The nerve that is affected by CH covers a very large area of your face and head, and the pain tends to show up wherever the nerve goes.
  5. CHfather

    Newb here

    Trucker, FunTimes is right on. Read this, please. It's my best recitation of what I've picked up in ten years here. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  6. CHfather

    I need help from the veteran survivors of CH

    That's rough, Ken'. I don't think they're sure it's CH, or they probably wouldn't have prescribed indomethacin, which doesn't treat CH but a condition that's a CH "lookalike." You are getting three preventive medications and no abortive. That's pretty weird. Two of them, or all three of them, can make you feel like crap in various ways. You weren't prescribed either oxygen or some kind of triptan, such as Imitrex, for stopping your attacks? No attempt to try prednisone while the preventive cocktail takes effect? When you say "high doses," what were the actual dosages? (I'll bet they're not high for treating CH.) Are they monitoring you -- both Depakote and Verapamil should be monitored in the first weeks, for different reasons. Get on the vitamin D3 regimen. GET OXYGEN. READ THIS: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ What are your actual symptoms? Can't be still during an attack? Eye red, runny? Nose runny? Pain where? Pain when? How long? Shands has a good general reputation, but most docs suck at treating CH.
  7. CHfather

    I need help from the veteran survivors of CH

    Batch has modified the regimen a bit over time, but I believe the basics are still what is listed at the bottom of the fifth page (which has the page number "2" because it's the second page of the second section -- it's the fifth page overall) of this document: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 It's also the chart a little way down on this page: https://clusterbusters.org/forums/topic/1308-d3-regimen/ It does not look to me like you have the right stuff at all, and you need to stop the 25,000IU of Vitamin A right away. How soon you might see results depends in part on how low you blood vitamin D is, among other things. Usually it's at least a couple of weeks, but for some people it's quicker than that. Read in either of the two files I linked you to about "loading" to ramp up your D level faster. You can send a message to Batch by clicking the envelope icon on the top right side of the page and typing Batch into the "To" line. He's a great guy who will be happy to help you. How much O2 will cost also depends on a lot of things, including what your insurance coverage is. You either need to get a prescription from a doctor for O2 or set up a system using welding oxygen. Very different initial and ongoing costs associated with each of those. Having O2 will greatly reduce the desire you state to harm yourself. When you get started on it, get back to us and we can help you. In the meantime, I'd urge you to read this whole file. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ There are things you can do right now to reduce your suffering.
  8. See, I told you! Nothing here.
  9. gore', this sounds a lot like hemicrania continua. Have you taken indomethacin?
  10. CHfather

    Just diagnosed

    Glad you got diagnosed, t'. It's highly unlikely that verapamil has worked in two days, particularly at the low dose with which I assume you started. Maybe your cycle's ending? Pretty much everything non-arcane that I know about non-"busting" ways of dealing with CH is in this file, as well as some basic busting info: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  11. CHfather

    New need info

    Dana' is right about different things signaling the end of a cycle for different people. D3 regimen (what FunTimes sent you and what you found work, too): http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Frankly, it's very unlikely to help you with this cycle, but it will help a lot regarding future ones. Strongly suggest that you read through this to be sure you're doing all you can right now and in the future: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ OXYGEN, energy shots, Benadryl, melatonin, etc.
  12. CHfather

    oxygen

    '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.
  13. CHfather

    WORRIED sick.

    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.
  14. CHfather

    WORRIED sick.

    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
  15. CHfather

    Is there something about Australia?

    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]<<
  16. CHfather

    oxygen

    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.
  17. 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
  18. CHfather

    oxygen

    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.
  19. 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).
  20. 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.
  21. 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.
  22. CHfather

    Happy birthday Dallas Denny

    One of the first; still one of the best.
  23. 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.
  24. 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.
  25. 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.
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