CHfather

Not ignoring your question, cn, just not fully sure what you're asking. Twinges of pain in the eye for someone who doesn't have CH? In general, I think we all get twinges all the time that we notice but don't worry about unless we have some reason to fear that they have more meaning . . . so most twinges, I'd say, are meaningless in terms of indicating a deeper problem. I guess it's partly a matter of how often/how severe, etc. This probably isn't answering you very well -- sorry.

Your mom was a very big help to me when I first came here, so please thank her for me. I remember her posts as being pretty short, but always to the point and valuable. She's got some OCD in her, too, if I'm remembering right.

Well . . . In Rozen's big CH study, 3% of the people who had CH also had mothers with CH (6% of people with CH had fathers with CH). There's actually a lot of data showing some family connection, and when you first read those things it can sound a little scary: 14 times more likely to get CH, or even higher, and things like that. But, though I'm no statistician, I assume that would mean 14 times whatever the percent is in the population as a whole, which would mean at most (I think) 14 x .1, or 1.4%. So the actual likelihood that you're going to get CH, while maybe bigger than you'd like it to be, is still very small. (In general, these kind of data can be scary. You read something that says "people who do x have a 20% higher risk of [some awful thing]," and you have to take a moment to realize that if the general risk is .1%, your risk is .12%). Migraine, on the other hand, is definitely familial. I've read that as many as 4 out of 5 people with migraines have a family history of that condition. My father died at 46 from a heart attack, which creates a family risk condition. My two brothers and I all celebrated when we reached 47. We're all going reasonably strong -- my older brother is 79, and last year he moved to Cambodia, full time, because he thought he might enjoy living there for a while. So, cn, I'm very confident that you'll be happily CH free for many years to come, probably for your whole lifetime. Regarding your mom, please start a thread with as much information as you can give us about her (what she's doing now for her CH, whether she's episodic or chronic -- those kinds of things). You'll get lots of ideas for her.

 GREAT to hear this!   This, too!

Interesting, didg, and thank you. I worry that there's not a happy explanation for your recent absence, but I hope I'm wrong. From 2005: >>A device that sends pressurized carbon dioxide up one nostril and out the other -- without being inhaled -- appears to rapidly abort migraine pain, researchers reported. In controlled studies, nearly 30% of patients suffering from migraine attacks were pain-free within two hours of initial treatment with the CO2 device.<< This doesn't seem like a particularly good result, does it??? "Rapidly?" I don't think so. http://www.medpagetoday.com/Neurology/Migraines/1817 The company that's proposing to test this for CH, Capnia, had to cancel its migraine clinical trial because of "low enrollment and lack of funding for study." https://clinicaltrials.gov/ct2/show/NCT01253915 The CH clinical trial, in which some folks will get a placebo while others get the "real thing," doesn't seem to have been scheduled yet. I was amazed that there were people courageous and public-spirited enough to do that maybe-getting-the-placebo thing with that vagus never stimulator clinical trial; seems like it might be even harder to get folks to sign up for this one.

A lot of us had hoped that when Daniel Radcliffe (Harry Potter) was diagnosed with CH, he might become a spokesperson of some sort. Hasn't happened yet. From time to time, we think of other possible famous spokespeople, but not much comes of it. In the non-famous category, some of the greatest folks possible are out there advocating for CH awareness -- Bob Wold, for example, and others who I won't cite by name but who are advocating their butts off every single day, including at Headache on the Hill. And we do have a matinee idol, Dan "hipshot" Ervin: http://channel.nationalgeographic.com/channel/drugs-inc/videos/magic-mushroom-medicine/

Here's an interesting discussion of that. Can't see why what's true of cold outside air for runners wouldn't be basically true for inhaling O2 from a chilly tank kept in your car (still probably less cold than the outside air, I'd imagine). Of course, I could be wrong in making this equivalency, so please just consider it as some information until a smart person actually answers your question.' http://www.fleetfeetcolumbus.com/training/mit-articles/got-a-burning-in-your-lungs-how-to-breath-in-the-cold-weather (In another thing I read on this topic, it emphasizes that breathing through the nose is a better way to be sure cold air becomes warmed than breathing through the mouth.) >>>This time of year I know that many people become cautious and nervous about the cold air you breathe in while running outside, and that you are concerned your lungs were going to be exposed to very cold air and potentially damaged. Many express specific concern about the burning sensation that is sometimes felt in the lungs while running in the cold. I want to reassure all of you that your lungs will be completely fine. The air you are breathing in when running outside this time of year, while very cold in the atmosphere, is not cold at all by the time it reaches your lungs. Let me explain what happens, and why you feel that burning sensation. First, know that by the time breathed in air reaches the bottom of your trachea (i.e., your wind pipe) it is warmed to body temperature (98.6 degrees F) and is 100% humidified. This is true no mater what the ambient air temperature is, and no matter what the relative humidity is in the atmosphere. So there is never cold air that reaches your lungs. The burning sensation some of you are experiencing is caused by the dehydration and subsequent irritation of the cells that line the trachea. As air is breathed in this time of year, the relative humidity of that air tends to be very low (especially when compared with the relative humidity of the air in the summer time). Remember that the air needs to be brought up to 100% humidification before it reaches your lungs. Where does all that extra water (humidity) come from? The answer is the cells that line your trachea give up their water supply to humidify the air that is about to go into your lungs. This is not a problem if you are only outside for a short period of time in the cold weather. However, when you are outside working hard (e.g., running) and you are breathing a lot harder, those cells that line the trachea become severely dehydrated. Once dehydrated they become irritated, and you perceive this dehydration and irritation as "burning" in your throat and lungs. This sensation is not at all uncommon for those that are new to exercising outdoors in the cold weather. There are at least two things you can do in order to minimize the feeling. First and foremost, you must stay hydrated this time of year. I know many of you might think that it is cold out, I am not really sweating all that much, so why do I need to drink for hydration this time of year. The answer is you are sweating more than you think, and if you stay well hydrated you will go a long way toward minimizing that sensation of "burning" in your trachea. The other helpful tip is to focus on deep breathing and not "panting" as much. Short quick breaths will irritate the trachea even faster.<<<

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Not to mention  [smiley=vrolijk_26.gif], [smiley=dankk2.gif], and [smiley=tekst-toppie.gif]

Beautiful!

Jeebs dancing the habenula

Posting this mostly because there's been interest expressed in some brain science stuff here. This isn't directly related to CH, or at least to CH causes and treatments (though I suppose maybe it is). So, here's a study that shows a tiny brain part directly involved in anticipating bad events -- the habenula. (Sounds so cute, doesn't it?) https://www.ucl.ac.uk/news/news-articles/0714/290714-Bit-of-brain-signals-how-bad/ The two parts that interested me regarding CH were: >>“Fascinatingly, people were slower to press the button when the picture was associated with getting shocked, even though their response had no bearing on the outcome.” says lead author Dr Rebecca Lawson, also at the UCL Institute of Cognitive Neuroscience. “Furthermore, the slower people responded, the more reliably their habenula tracked associations with shocks. This demonstrates a crucial link between the habenula and motivated behaviour, which may be the result of dopamine suppression.”<< I don't know -- I was just thinking of how often people with CH wait even when they know they probably shouldn't -- hesitating to get on O2 at the first sign of an attack, or hesitating to bust at the first sign of a cycle, for example. >>“Other work shows that ketamine, which has profound and immediate benefits in patients who failed to respond to standard antidepressant medication, specifically dampens down habenula activity,” says Dr Roiser. “Therefore, understanding the habenula could help us to develop better treatments for treatment-resistant depression.”<< Just thinking here about the positive effects that some people who are taking ketamine have reported related to their mood. . . . Like I say, not a huge amount here, but the thing in itself is pretty interesting, I thought.

I'm pretty sure you can drop or very substantially lower the melatonin when you're out of cycle. 30 mg is a lot. Most folks maintain the D3 thing all the time. Blood tests will tell you when you can drop the D3 itself down to 10,000IU. You're not taking the Omega-3, either, or all the recommended minerals? There are many people who will say that the full D3 regimen seems to have kept them PF, or helped keep them PF (along with preventive busting -- or not, in some cases) for very extended periods.

Many giant smiles and best wishes here.

I guess I gotta ask, also, whether your cluster attacks are lasting longer than they used to (you mention a half hour in your post), and whether maybe now it's time to be contemplating O2?

Talking to my pal with the miracle anti-depressant med yesterday (I've mentioned him before), he was saying that the drug has been shown to treat what is known as "cortical spreading depression," which is believed by some to be the cause of migraines. (http://www.dana.org/Publications/Brainwork/Details.aspx?id=43724) Although a migraine/cluster connection might or might not apply here (since this seems to maybe be partly related to auras), he said he's hopeful that it might eventually treat CH as well as migraines. "Eventually" is a long way away, but it's another avenue that's being explored. (More about the anti-depressant within this piece, if you're interested: http://www.chicagomag.com/Chicago-Magazine/January-2015/Medical-Wonders/

Another candidate for the FusterCluckers! Great to hear your good news, Serg.

Best, and so many thanks, to everyone.

Our revered member 1961mom posted this on Facebook recently -- I'm just bringing it over here. http://7thspace.com/headlines/501518/cluster_headache_associated_with_a_clinically_non_functioning_pituitary_adenoma_a_case_report.html

Tranceplants will deliver quicker for additional $. www.iamshaman.com is in the Midwest, but I don't recall if they have a fast shipping option (just thinking about holiday slowdowns).

It's quite typical for attacks to return a few days after the early busts -- "early" might mean the first two, or the first three, or whatever it takes to finish the job. I mentioned in some thread recently (maybe one of yours) that on some rare occasions melatonin seems to worsen attacks. I'd consider cutting it out for a night and seeing whether anything changes. Or not -- just a thought.

 Well, it seems like you want to be at 400-500mg/day of calcium. In that regimen, Batch says >>This points out the importance of taking 400 to 500 mg/day magnesium and calcium.<< You say above that you took 400 calcium and 400 magnesium. Seems like you should keep doing that.  He does say later in the regimen that some people who have raised their D levels into the desired range but not had relief from their CH, have done well after dropping the calcium for a while. But I doubt that you're in the category. I guess the general point is that I'd stick as close as possible to the prescription. Batch is extremely helpful in response to PMs. He's a member here, but I don't know whether he gets PMs. Here's the link to PM him: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?action=viewprofile;username=143722353E560 He's much, much more active over at www.clusterheadaches.com, so you might be more likely to reach him with a PM from there. If you try to reach him and can't, I'll PM you his email address.

Well, the info is all here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 To be honest, I haven't checked to see whether there have been any updates/revisions from Batch since this was issued in February. I will do that in the next few days -- but I think you'll do well to follow what's here. The list of core ingredients begins a ways down the page, under the subheading "Anti-Inflammatory Regimen Supplements." That subhead is a little ways under the bold major heading, "Basic and Complete Anti-inflammatory Regimen Treatment Protocol and Dosing Guide." In the tenth paragraph after the supplements are listed, it says "This regimen can be taken any time of the day, but it's best taken with the largest meal of the day. You can also take it with an 8oz glass of lemonade, limeade, orange juice or any fruit juice high in citric acid sweetened with a little honey." I know that Batch at one time said that he considers the fruit juice (and I guess the honey) to be an important part of the regimen, although it's not described that strongly here. It's good to read everything in this document, particularly about loading doses of more than 10,000IU (and about taking it separately from verapamil, but I don't think you're taking verap), but the core regimen is where you want to start.

Serg (referring in part to your other recent post), The sporadicness and unusual pattern do sound like slapbacks. They can be (as you seem to know) quite awful, but often they abate after the third bust. A few people have found that melatonin seems to make things worse for them. Sorry I can't help you make the call on that one, but you might consider skipping the melatonin for a night to see what happens. I'm sorry -- I should read back over your posts, where this question is probably answered, but . . . you have oxygen? you're trying energy shots/drinks?

You mean every time you've come to the site you get counted as a visitor? 'Cause that would explain pretty much everything. I probably check in at least 10 times a day, and I'll bet Jeebs does, too (as well as many others). And I can't help noticing that not one actual "guest" has noticed this thread and had anything to say about it.