CHfather

Moxie, I was very happy to see your head poking in, but then very sorry to see the condition it's in. So many here hoping it gets better soon. Love to you.

In another thread, shya reports that her husband had some success with clomiphene, which is a fertility drug for women Here's a link to the abstract of a recent report, from Dr. Todd Rozen, of a long-term remission: http://onlinelibrary.wiley.com/doi/10.1111/head.12491/abstract And here's what you'll see at the link: Objective To describe a second case of treatment refractory chronic cluster headache responsive to clomiphene citrate and with long-term follow-up. MethodsCase report with 7-year evaluation. CaseA 63-year-old man with a 17-year history of chronic cluster headache preceded to have significant adverse events or was nonresponsive to multiple cluster headache preventive medications including verapamil, lithium, valproic acid, topiramate, baclofen as well as greater occipital nerve blocks and inpatient hospitalization. The patient experienced 3-5 headaches per day. On clomiphene citrate 100 mg/day he became 100% pain-free and remained so for 3.5 years with only mild fatigue as a side effect. He then had cluster headache recurrence and did well on gabapentin for another 3 years with repeat headache recurrence. Clomiphene was restarted, and he became pain-free once again. DiscussionThis is the second reported case of the effective use of clomiphene citrate for the preventive treatment of medicinal refractory chronic cluster headache. This is the first case to report long-term follow-up of this neurohormonal treatment. Clomiphene citrate appears to be safe for extended use in chronic cluster headache even in an elderly sufferer and has a minimal side effect profile. The mechanism of action of how clomiphene prevents cluster headache may involve both its ability to enhance testosterone production and its ability to bind to hypothalamic estrogen receptors. Clomiphene citrate should join the list of alternative cluster headache prophylactic treatments to be considered by headache specialists when conventional cluster headache preventives are ineffective.

Mit', maybe this has been asked somewhere else, but do you also have oxygen?

Charlotte, have you checked at any of the Facebook cluster headache groups? A lot of folks there from around the world. They might not recognize Oliver's CB handle -- but some might, as there are quite a few ex CBers there, and maybe some others will recognize his real name.

D3 comes in units of more than 1000IU. I think most places will sell at least 5000IU, and probably 10,000IU, and you can buy larger units online.

There's a lot in this book, including the canards about leonine features, hazel eyes, and rarity in women, as well as some other even crazier previous assertions. I think if you click on this it will take you to the general area of the book: https://books.google.com/books?id=aJRV199FZcoC&pg=PA306&lpg=PA306&dq=natural+history+of+cluster+headaches&source=bl&ots=fyJk6GA3h7&sig=4b9Sr072xVPYxzucg8arOZIX-fA&hl=en&sa=X&ved=0CEgQ6AEwBmoVChMIvbuq563kyAIVRRo-Ch2bIw6P#v=onepage&q&f=false If not, the book is Wolff's Headache (2001), beginning on p 283. This article also looks interesting -- http://www.ncbi.nlm.nih.gov/pubmed/15745624 and on the right side of the page is some other stuff. There's this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117620/ The wikipedia entry has some info, including this: >>CH has alternately been called erythroprosopalgia of Bing, ciliary neuralgia, erythromelalgia of the head, Horton's headache, histaminic cephalalgia, petrosal neuralgia, sphenopalatine neuralgia, vidian neuralgia, Sluder's neuralgia, Sluder's syndrome, and hemicrania angioparalyticia.<<

There's a list here of recommended doctors: https://clusterbusters.org/cluster-resources/ I see there are three of them, and none in the Twin Cities, but maybe one is close.

Mike, I can't say about the tiredness you're experiencing from the Zomig (haven't heard that side effect reported much), and I'm a little confused . . . Are you using it and oxygen to abort attacks? Are you using it when O2 doesn't seem to be getting the job done? Have you tried an energy shot/energy drink (or maybe strong cup of coffee) just as you get on the O2? That helps speed up the abort for a lot of people, and might make the Zomig unnecessary. Do you have your oxygen system optimized (flow rate above 15 lpm, Optimask)? Are you doing the vitamin D3 regimen?

Here's something I found from a quick look, which includes this paragraph. Doesn't answer your overall pH question (though I do believe that Batch's regimen works in part by creating a more alkaline, as opposed to acidic, pH). http://motherboard.vice.com/blog/harmful-bacteria-are-huge-fans-of-vaping >>The going hypothesis for why this happens is that inhalation of e-cig vapor dramatically increases the pH of the nasopharynx environment, sending it from 7.4 to 8.4. That's high for both bacteria and for humans, and the result is new stress put upon the MRSA cells, which then go into danger mode. Danger mode for a bacterium looks an awful lot like attack mode from the perspective of a host human. Note that this is a shift in the opposite direction relative to regular cigarettes, which induce a slight drop in pH, to around 7.1.<<

It's good, and even admirable, that you have taken initiative to share what you have learned with others. The additional problem with the word "cure" is that people who try it and don't get "cured" -- and there are more than a few of those, particularly if they follow your very limited instructions -- will be further demoralized about seeking and trying other treatments. I'd also say that a shockingly large percentage of people don't know about other critical elements of treatment, such as oxygen. You could do anyone who happens to come yo your site first a very big favor by letting them know that this is just one thing they could do. I'm totally puzzled about why you wouldn't present all the information that Batch has created, including the full regimen (calcium, zinc, vitamin A, etc.), "loading doses," etc. You are attributing (citing) something to Batch that doesn't represent what he strongly recommends. I don't know whether he would give you permission to just copy and paste what he he says (here, for example: https://clusterbusters.org/forums/topic/1308-d3-regimen/),but it would seem wiser and more helpful to let people know that while a limited and different (he doesn't recommend curcumin, for example) regimen worked for you, others may need to do more (do it "right.") I have watched every response to the D3 regimen here and on Facebook since it first came out. The results are great, and we encourage everyone to try it. But not everyone gets fast results, and some people, for some reason, get no great results, not even full remission. I also have to wonder why you would post your message here but not link to here at the place in your website where you say "forums" with a link. I would say that you have taken a potentially valuable step here, which is, as I have said, admirable. I do think you could make your site more accurate and helpful in the ways that I have suggested.

Like THMH said, you're very fortunate, and may your good fortune continue, without side effects. If this should stop working so well for you, remember that we're here, and that there are plenty of effective things you can do without potential side effects.

You know about energy shots/energy drinks for aborting or reducing the severity of attacks? Works very well for lots of people. Bring a couple on the flight -- might provide an alternative to shooting up. (Shots are generally better than full drinks -- more caffeine and easier to get down fast. Some folks here say a strong cup of coffee can be quite helpful, too.) When you say you are taking "licorice extract" every day, do you mean licorice root? I ask because the person who developed that approach to treatment was very insistent that licorice root should not be taken for more than a few weeks at a time. I guess given your profession you would know; I'm partly alerting you to that concern and partly asking whether it is actually licorice root that you are taking.

Yes, like Denny says: https://ouchuk.org/downloads Also, I'd recommend opening the CB Oxygen Document here -- https://clusterbusters.org/oxygen-information/-- and printing out the items that are linked to in notes #3 and #4 on the last page. #3 is the study from a prominent medical journal about the effectiveness of O2, and #4 is the European guidelines for treatment of CH. About halfway down the page there you will see that O2 is listed as the #1 abortive, along with sumatriptan injections. Consider bringing that info with you to your appointment.

An "oxygen machine," called a concentrator, is not the way that oxygen is administered for CH. Tanks of oxygen, with a high flow-rate regulator and a non-rebreather mask (not nasal cannula, in case he's also been using that), are the way it's done correctly. I would say again, agreeing with Denny, that he is getting very inadequate medical treatment. When you say "the only thing he has not been able to try is LSD," does that mean he has tried psilocybin, LSA (from rivea corymbosa seeds), and DALT? If so, has he tried them properly -- with doses every five days while NOT taking the triptans? And he hasn't even used sumatriptan injections yet, which will serve him 10X better than the tablets and the oxy! His doctor, however reputable, is lousy. I haven't seen Prialt referred to ever for CH patients, but maybe I have missed something. It's just an analgesic; it's very likely that it will not help. An important thing to be aware of here is that this is not a "pain management" issue, because most pain drugs just simply do not work on CH. There's practically nothing that can be done in an ER for that reason. People go and they get loaded up with "pain medicines" such as tramadol or opiates, and they don't help. What helps, in the medical realm, for CH is, #1, oxygen, and #1b, injected triptans. If he hasn't had a steroid taper (prednisone), that could be tried, and verapamil as a preventive if he hasn't tried that. What works, non-medically, are D3, the other things I have mentioned which you say he has already tried without success, and busting with psilo, seeds, or acid. My daughter was diagnosed for five years, by several fancy doctors, as having trigeminal neuralgia, before we finally figured out that she has CH. Many, many people have suffered from years of misdiagnosis of "headache" conditions. Maybe he has CH . . . and maybe he doesn't. Certainly I wouldn't trust the doctor that is treating him to provide an accurate diagnosis, given how bad his prescriptions have been. There are many CH lookalikes, such as various forms of hemicrania. I'd suggest that he should try the drug indomethacin, which won't help if he has CH but will help if he has one of the lookalikes.

According to the OUCH "Recommended Doctor" list, these three in or near Seattle have been recommended by people with CH:: Issaquah: Dr Lily Jung Henson Seattle: Dr. Sylvia Lucas Neurology Headache and Multiple Sclerosis Clinic at UWMC Dr. Elena Robinson Krischner Gordon and Erlich Mds As Denny says, you have been getting really bad medical advice for a really long time. It's shocking to me (and I suspect to most of us) that oxy + imitrex pills gave you any relief. (Makes me wonder whether you actually have CH -- I'm not saying that you haven't been diagnosed with CH; only that those things usually don't work, and oxygen, properly used, almost always does.) Some things even a good doctor probably won't recommend (because they won't know about them): the vitamin D3 regimen helps lots of people (see the ClusterBuster Files section of this board for more info); drinking an energy shot or energy drink (or sometimes a strong cup of coffee) at the first sign of an attack helps; melatonin at night, starting with 6-9mg and working up, can help.

Pete -- Quick answers. Read more at https://clusterbusters.org/oxygen-information/ Minimum flow rate of 15lpm recommended. Higher seems even better. Best mask is the "ClusterO2 Kit": http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit Depends on what you mean by "a while," but probably yes, though it'll probably take longer. Downing an energy shot or energy drink at the first sign of an attack, just before you get on the O2, helps lots of people. You could do that as you head for your O2. The general recommendation is to stay on roughly as long as it took you to abort the attack, but many people say 5-10 minutes. Two tips that are not in the document I referred you to: (1) Look down toward your feet as you use the O2; (2) After each inhale, hold the O2 in your lungs for a couple of seconds before you forcefully exhale.

Just a couple of notes on MG's fabulous post. You don't want to use those injectable abortives (Imitrex, typically) if you are also busting, and you don't want to use any of the preventive doctor meds, either -- except possibly verapamil but probably not that, either -- if you are busting. They make busting ineffective (we generally believe). And staying on the O2 after an attack has been aborted, for at least 5-10 minutes, helps some people ward off subsequent attacks.

Hey didg, good to see you!

Very glad to read all this!! And . . . your husband is being very unwise not to get the O2, for all the reasons we have discussed, mostly because it works and (unlike verapamil and the other meds) it has no side effects. He can do both O2 and verap, of course. Many people do. Verap is a preventive, O2 is an abortive. Has he tried an energy shot, such as 5 Hour Energy, at the first sign of an attack? That can really help. And I can virtually guarantee you that his vitamin D level is either low by medical standards, or at least far below the level at which it becomes helpful in counteracting CH. It will not hurt him to start the whole regimen now, including 10,000IU/day of D3. I'm betting he'll be well advised, after the test results come in, to go much higher than that. But, I'm glad for the good news and hoping for these other steps to make the news even better.

Denny, when I click on this link, I get some kind of stern warning message that I shouldn't be going there. I could copy it and paste it into my address bar, but would like to be reassured that it's from you first.

FWIW, mine also would not reset using my username. I had to use my email address.

In general, busting has meant using illegal substances to treat CH. People have used them because they very often work better, with less serious side effects, than prescription medications. You can read all about busting in the "ClusterBuster Files" section of this board. Right now, a lot of people are using a substance that is like some of the illegal busting agents -- it's a tryptamine, like them -- but is currently legal in many -- but not all -- places. It's called 5-meo-dalt. It might or might not be as effective as the illegal substances, but it is legal (in many, but not all places). Since you commented on the other thread here, I'm going to assume you read the posts in that thread, so I'm not going to repeat all that information, except to say that if your husband doesn't have oxygen, that should be your/his first priority. You mention "triptans" there, but you don't say whether it's in an injectable form or some other. Injectable works a lot faster.

Sorry, schlossd, if you've answered this somewhere else, but you don't mention oxygen here. Do you have it? (If not, maybe you'd want to take a look at the CB Oxygen Page under the MENU tab on the left side of the page.)

Just to add my voice to what has been said. Everyone with CH is a hero in my book, but those who volunteer for trials, knowing they might get the placebo, are all caps HEROES.

Moxie, I looked this up a while back after encountering someone that there is such a thing as cluster migraines, and that his son has them. I agree with you it's hard to get a clear answer to your question. I'm kind of trusting that this journal article is stating it correctly -- that some people have symptoms that partly fit the clinical definition of CH, and also symptoms that partly fit the clinical definition of migraine, but they don't fall, clinically, into one category or the other, but that "cluster-migraine" is not a good clinical diagnosis. http://www.ncbi.nlm.nih.gov/pubmed/17367596 Cluster-migraine: does it exist? Applebee AM1, Shapiro RE. Author information Abstract The nosological boundaries between cluster headache and migraine are sometimes ill-defined. Although the two disorders are distinct clinical entities, patients sometimes present with clinical scenarios having characteristics of both headache types, but either do not fully meet International Classification of Headache Disorders, Second Edition diagnostic criteria for either disorder or have sufficient symptoms and signs to allow both diagnoses to be present. These occasions provide diagnostic challenges and include what is variously described as migraine-cluster, cyclical migraine, clustering episodes of migraine, cluster with aura, or atypical cluster without autonomic symptoms or severe pain. Patients with symptoms overlapping cluster headache and migraine likely reflect the inherent clinical variability in each of these two disorders, rather than distinct diagnostic entities in their own right. As I was just casually following up on this, I saw this 1997 report on the coexistence of migraine and CH and of course thought of you (and others, like Mystina). http://www.ncbi.nlm.nih.gov/pubmed/9046719 This part of a sentence caught my eye: >>The present series seems not to confirm the hypothesis that migraine transforms into cluster headache...<< Guess maybe we've come a long way, if that hypothesis could somehow have been held not so long ago.