CHfather

Pupp, I'd suggest that you read this post. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

The standard pharma prescriptions for CH are verapamil as a preventive and oxygen and injectable sumatriptan (or triptan nasal spray) as abortives. Prednisone is sometimes used, though a five-day course is very short. Usually, verapamil is started at the same time as the prednisone, because the prednisone can stop pain (usually temporarily) while the verapamil takes effect. Verap effects should be monitored with ECGs. Verapamil doses should be increased every 10-14 days, but you've been 20 days with no increase (and no ECG?). Oxygen isn't a "next step," it's a first step. Apparently you have sumatriptan tablets, which have been shown to be useless. An MRI is standard procedure. All of those things are written up in all the standard medical references for treating CH, and your doctor followed none of them. That's the basis for my opinion. (My daughter, who is the person in my family that has CH, was very comfortable with the fancy downtown neuro who diagnosed and treated her for many years on the basis that she had trigeminal neuralgia, which was a ridiculous diagnosis.) (BTW, doctors don't recognize this (it's not in the literature) but it has been noted within the CH community that "immediate-release" verap seems to work better than the extended-release kind, so you might ask for this if it's not what you're getting.) You definitely have CH-like symptoms. OTOH, restlessness/inability to be still during an attack is actually a clinical indicator of CH, and what you describe is different from that. Do you have these overall symptoms year-round, or do they come in cycles of some weeks or months and then go away? Whatever it is you have (and I'm definitely not saying that it isn't CH), you've been suffering way too much. I'm glad you found your way here. If you haven't found your way to this list of possible triggers from the doc I linked you to before, you might take a look: https://clusterbusters.org/forums/topic/4568-triggers/ Since you get hit after dinner, some of the food things might be particularly relevant. MSG, which is in a lot of foods, is a particularly bad actor. You should start the D3 regimen right away. Linked to in that doc from my previous post. Could help you pretty quickly (10 days/two weeks or sometimes less), though it doesn't always work so fast. Top-line immediate things you could do, in my opinion, (all listed in the linked-to doc from my previous post) are to try an energy shot (such as 5-Hour Energy) at the onset of an attack, take Benadryl 25 mg 3 or 4 times a day, and try a pretty high dose of melatonin at night since your attacks tend to be nocturnal (starting at maybe 9mg of melatonin and working up as tolerated), drink lots and lots of water, and see whether you can identify any triggers. If you do melatonin at night, don't also do the Benadryl. Some people find that sleeping more upright (for example, in a recliner or even in a chair at a table with pillows) reduces nighttime hits.

Moxie is a great source of advice. I just want to mention that the "key files" she refers to here are linked to in the "New Users...." info link that is at the top of each page in blue. Didn't want you worrying that you might have missed some critical information.

Jeler, You've got great advice here so far. Plenty for getting on the right track. Some of the same information is repeated and expanded in this post, along with more detail about things that might help with the pain while you're taking care of the critical things: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Yep. Your doctor isn't very good. It's great that s/he diagnosed your CH at your first visit (assuming that you actually have CH*), but the prescribing . . . not so good. You might be able to get by if that doctor will listen to what you tell him/her that s/he should be prescribing, because we can help you with that, right down to what a prescription for oxygen should say. But if this doc resists O2, higher doses and proper administration of verapamil, and injectable sumatriptan, you need to look elsewhere fast. (You might not need the verap in the long run as you use the D3 regimen, but that's a different matter.) * Given the symptoms you describe, it's possible that you have a CH "lookalike" condition. Tell us a little more about your symptoms and when you get your "headaches." The "lookalikes" have a straightforward treatment, a medication called indomethacin, and some people think it should be tried early after a CH diagnosis to rule out the "lookalikes," which are called hemicranias. This is basically good advice, and it's probably what a doc would prescribe (Imitrex). But you can get sumatriptan in vials, with syringes, to measure your own injections, and that's a lot easier than disassembling the autoinjector.

Thank you for this thoughtful response, Siegfried. I'll just add a few notes. One is that recommended dosing for indomethacin is all over the place, between 50mg/day and 300mg/day. And while some sources say the effects if indo can be seen pretty quickly, others say it can be a couple of weeks or more. So I can't help but wonder how many people have "tried" indomethacin but (as is also true with some CH meds like verapamil), not really had it at high enough doses for a long enough time for a fair test. Second, I would be cautious about any data regarding hemicranias, just as we have had to be cautious about CH data. Hemicrania wasn't recognized as a medical condition until the 1980s, and I'm going to guess that the majority of doctors don't recognize it, so it can be strongly underreported. I wonder sometimes how many cases of "intractable chronic CH" are actually misdiagnosed hemicranias. There was a journal article in 2001 with the title "Hemicrania is not that rare." One of the authors was the great student of CH, Todd Rozen. (https://www.ncbi.nlm.nih.gov/pubmed/11577748). Maybe current projections factor in that observation. Also, the women/men thing is highly untrustworthy in my view, because as we have seen with shifting CH "statistics" over the years, women quite often get misdiagnosed. Even though the hemicrania reports go in the opposite direction (more women than men with hemis; more men than women with CH), I just don't trust any gender-related statistics since there's no reason that I know of that there should be a prevalence in either direction, and so I tend to think it's a function of some kind of diagnostic error. All that said, your general principle is probably correct, and maybe people should treat things as CH unless standard CH abortives don't work for them. (On the other hand, there are some "experts" who say no harm done with first trying indomethacin so hemicrania can be ruled out.)

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.

That's horrible. So sorry!!!!!!!!!!!!!!!!!

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.

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/

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.

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.

See, I told you! Nothing here.

gore', this sounds a lot like hemicrania continua. Have you taken indomethacin?

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/

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.

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.