CHfather

Yes, thank you for all this. (I had seen you were at the board the other day and I was hoping you'd see this and respond.) My daughter's favorite thing about the demand valve system we got at eBay is the soft and comfy mask that came with it. I've been imagining that this was a unit for dentists, and that that's why the mask is so cushy. Hmmmm . . . As I'm remembering the Harbor Freight reg, doesn't the barbed adapter screw onto a DISS valve? All the equipment's with my kid, and she doesn't live nearby, but I'm pretty sure that she uses her DV with the HF regulator.

This is much more a question than a statement, and I welcome correction. I think that the lpm of your regulator is not relevant when using a demand valve. I think that when you use the DISS valve on the regulator you are bypassing the lpm settings altogether. Often a standard O2 regulator won't have a DISS valve, but some do. Welding regulators always do.

Welcome, Pro2'! Can you tell us what you are doing now to treat your CH? If you don't have oxygen, stop now, read this (https://clusterbusters.org/oxygen-information/), and start working on getting O2. If you're not doing the D3, stop now, read this (https://clusterbusters.org/forums/topic/1308-d3-regimen/), and get started.

Thank you for this correction, spiny! The original statement from Toni is in the first paragraph of the next-to-last post on page 1 of this thread. Do you think the "Cluster Knot" would be detectable visually -- do you think there's enough actual swelling (as opposed to just tenderness) for that?

I have never seen swelling at the back of the neck described as a CH symptom. Not saying it isn't . . . You might consider emailing Batch, the fellow who developed the D3 regimen and who follows it very closely. He is a great guy -- a true CH hero, in my book -- and it's almost certain that he will respond to any questions you ask him. He might not know anything about D in kids, but it's worth asking him, I think. Email him from here: https://clusterbusters.org/forums/user/17422-batch/

jon', glad for your good news. No jinx. here's some info about a clinical trial of monoclonal antibodies for CH: https://clusterbusters.org/forums/topic/3701-breaking-news-clinical-study-on-cluster-headaches/ Some people are holding out big hope for this one. I'm pretty sure ClusterBusters has also had a hand in funding some studies of CH genetics.

The clip is in two parts here: http://www.thedoctorstv.com/videos/doctors-staff-member-seeks-help-for-cluster-headaches (second part is in the "click here"). I agree that it's nice that CH is getting some attention, although I so wished that the segment could have been more thorough. We're left with the idea that the patient is basically fine now that he knows how to use his oxygen. And I really don't think all this calm patient-talk and doctor-talk truly conveyed how bad CH is. And my blood is still boiling, as it always done in these circumstances, at the fact that he was prescribed oxygen by a neurologist but was never shown how to use it correctly, and that he's been doing it wrong for 7 or 8 years.

A recent journal article. I guess the positive part is that there are some "advances" in understanding, and it suggests there might soon be more. As usual, all one can see without paying big bucks is what I have pasted here. http://www.tandfonline.com/doi/full/10.1080/14737175.2016.1216796 ABSTRACT Introduction: Cluster headache is the worst primary headache form; it occurs in paroxysmal excruciatingly severe unilateral head pain attacks usually grouped in cluster periods. The familial occurrence of the disease indicates a genetic component but a gene abnormality is yet to be disclosed. Activation of trigeminal afferents and cranial parasympathetic efferents, the so-called trigemino-parasympathetic reflex, can explain pain and accompanying oculo-facial autonomic phenomena. In particular, pain in cluster headache is attributed, at least in part, to the increased CGRP plasma levels released by activated trigeminal system. Posterior hypothalamus was hypothesized to be the cluster generator activating the trigemino-parasympathetic reflex. Efficacy of monoclonal antibodies against CRGP is under investigation in randomized clinical trials. Areas covered: This paper will focus on main findings contributing to consider cluster headache as a neurovascular disorder with an origin from within the brain. Expert commentary: Accumulated evidence with hypothalamic stimulation in cluster headache patients indicate that posterior hypothalamus terminates rather than triggers the attacks. More extensive studies on the genetics of cluster headache are necessary to disclose anomalies behind the increased familial risk of the disease. Results from ongoing clinical trials in cluster headache sufferers using monoclonal antibodies against CGRP will open soon a new era.

LTD, glad you reached out. Anyone with CH has been where you are, and it sucks. Have you tried quickly drinking an energy shot (such as 5-Hour Energy) at the first sign of an attack at work? Are you do anything besides O2 for your attacks? Here's a link to the "ClusterBuster Files" section of the board where the D3 regimen is described and where the files about busting are (they're the numbered ones). https://clusterbusters.org/forums/forum/6-clusterbuster-files/

Ditto what spiny said. As I remember, your husband is a great guy who was (is?) very resistant to actually treating his CH. He was taking some unusual triptan in tablet form, and maybe that was all. I'm sure we recommended practically everything to you the last time around, and I'm glad to see you at least got him do the D3, so I'll just plead with you and him to get oxygen, if he hasn't already. The rest of the stuff -- verapamil, an injectable triptan, melatonin, energy shots, busting, etc. and etc. -- I'm sure has already been covered, and it could probably help him, but if you have to put your persuasive energy somewhere, it should be for oxygen. Oxygen. OXYGEN.

Toni, My quibbles, which I said in my last post that I'd mention, are really about your doctor's overreliance on "typical" CH characteristics. If you look at this journal article, based on a survey of more than 1100 people with CH, you can see that variations are not uncommon. http://clusterheadacheinfo.wdfiles.com/local--files/file:us-clusterheadache-survey-1/US-clusterheadache-survey.pdf Again, I'm not saying she's wrong; just saying that I'm not convinced. One interesting thing in this survey is that 35% of the respondents said their CH started before they were 20 years old. I'd bet that the incidence of CH being diagnosed in people under 20 is much, much lower. The study shows that for almost 20% of people, attacks do not occur at the same time of day, and that for 40%, they don't come on at the same time of year (or at least not in the same month). Redness of the eye is a common, but not necessary, symptom, and sweating is even less common. I think that for many people, their CH periods were pretty short when they started getting them. I agree that it's more common for non-chronics to have a couple of cycles a year, not a cycle every three months . . . but I have no idea whether that's diagnostically significant. I also don't know what's typical of migraines. "Migraines are far more likely in a child, she hasn't ever diagnosed CH but has many patients with migraines." Of course . . . but of course maybe she's never diagnosed CH in children because she always thinks they're migraines.

Thank you so much for this report. I have been wondering how that appointment went, and I'm sure that others have been, too. There's a lot to quibble with in her diagnosis, but at least none of it is plain wrong. (I'll say more tomorrow about my quibbles.) Did she look at any previous blood test results to see what his current vitamin D level is? Most basic panels include that information, and it would of course be helpful for knowing whether taking more D3 would be advisable. Yes, many docs are horrified by the amount of D3 in the regimen, but in part that's because the recommended daily allowance is far lower than it should be because of a math error in the original calculation. For adults, 10,000IU/day is regarded as safe, and the amounts that have to be taken to induce toxicity (which is reversible just by stopping taking the D3) are huge, over long periods of time. (As I'm sure you know, more than a few people have suggested some possible linkage between low D levels and autism. I'm only observing this, not trying to get into your business on that subject.) You can find information about D3 dosage levels for children here: https://www.vitamindcouncil.org/about-vitamin-d/am-i-getting-too-much-vitamin-d/ I guess it's also a little puzzling to me that it seems that all she gave you were dietary recommendations for migraines. It appears from those few articles that we could find that verapamil and sumatriptan are recommended treatments for pediatric CH. They are also treatments for migraine. So I wonder why, just in case her diagnosis was wrong, she wouldn't have given you some meds that treat both conditions. There could have been many good reasons to err on the side of caution and see first what the dietary recommendations accomplish. I just feel like too often docs, who aren't the ones suffering, don't really take that suffering into account when they prescribe. Even if it's "only" migraines, it clearly is causing suffering for your son. I feel the same general sense of frustrated dissatisfaction that I think you feel, and also the same "maybe she's right" sense that I think you are feeling about the diagnosis. Wish it was clearer or simpler. And wish I could be more helpful.

I wish you the best. I am assuming that you know that sumatriptan injections (probably called Imitrex or Imigran, depending on where you are) are the best pharmaceutical abortive if you don't have oxygen. If you get your hands on those, let us know. I see that I didn't give you a link to the vitamin D3 regimen. It's important that you do the whole thing. Living in a consistently sunny place, you might already have pretty high vitamin D in your system, so you should check with a doctor and get a blood test for your D level before you go too far. https://clusterbusters.org/forums/forum/6-clusterbuster-files/

So very sorry about your medical situation! Sumatriptan tablets don't really work at all for most people. When you say they take 60/90 minutes to work, is that actually substantially shorter than your typical CH attack? Some people find that if they have regular attacks that occur on a specific time schedule, taking the sumatriptan pill in advance of the attack might help. Yes, there is some evidence that triptans can make a cycle longer and make attacks worse. I would say that is not true for everyone. So my general answer (before getting on to some other things) is that if the suma shortens your attacks appreciably, or if maybe you can time it so it works more effectively, yes, it might (or might not) extend your cycle. You just have to weigh the reality of shorter attacks (if that is a reality) against the possibility of a longer cycle. I know I'm basically just "answering" the question you asked with a restatement of that question, but I do think you have to first establish how much relief you're actually getting and then you have to just decide what to believe is true for you of using the suma. Like I say, it is far from certain that it will have bad effects, though it could. As other ways to deal with your attacks, you might try drinking an energy shot (such as 5-Hour Energy) or an energy drink (Monster; RedBull) at the first sign of an attack. That is very helpful for most people. The energy shots are actually likely to be more effective than the full drinks. If you can get melatonin, taking 10mg or more at night helps many people. Some find that if they put their feet in very, very hot water just as an attack starts it will help them. The vitamin D3 regimen has helped many, many people ( Do you have any way to get tanks of oxygen, the kind that is used for welding (not the kind that is used for SCUBA diving, which is just compressed air)? If so, you can create the most consistently effective way of stopping a CH attack (you'd have to also buy a mask and a regulator). I hope some of this might help you.

Great news! I would think that you might at least bring a citation to that pediatric article I linked to a few posts previously. I can't find a full-text version on the internet, but maybe the doctor will have better journal access. Even the abstract will inform the doc of core pediatric treatment standards -- oxygen, verapamil, and sumatriptan. I don't think you yet have a formal CH diagnosis (as I'm remembering). I don't trust a neurologist to even know what CH is, let alone diagnose it, so I would consider bringing (1) something that lists CH symptoms (and perhaps contrasts them with migraine symptoms), and (2) maybe keeping a headache diary over the next few days. Wishing you great progress!

Looking forward to hearing how this goes for you! Since it doesn't sound like you have cluster headaches, I can't really offer more than my best wishes that the shrooms will do really good things for you. It is generally believed that taking them more than once every five days (or at least four) is a waste, since the receptors are not open to receive the effects of shrooms for several days. I would think that would hold true for any shroom-based treatment program, not just for CH.

Of course, you are completely correct not to trust gps. You can try to remedy that by bringing information with you. Here, for example, is the Mayo Clinic page on treatments: http://www.mayoclinic.org/diseases-conditions/cluster-headache/diagnosis-treatment/treatment/txc-20206693 Sadly, your gp probably won't prescribe oxygen -- it seems to be common in the UK that you get referred to a neurologist first. But if your gp prescribes sumatriptan injections (Imigran) for aborting attacks and verapamil as a preventive, you'll have some things that will probably help you. Persist about the oxygen, though -- it will change your life. (And you can bring it with you while you're driving, too.) Frankly, the Imigran will also make your life better, in my opinion. You have to be careful with it, but for most people it will quickly stop an attack. Here's some info about oxygen: https://clusterbusters.org/oxygen-information/ Mushrooms, LSD, and other psychedelic drugs ("busting" substances) have a different function in treating CH than oxygen (or sumatriptan). Taken a few times five days apart, busting substances can end a cycle. But between those times, you will probably continue to have CH attacks. Sometimes they can be even worse (or more frequent) than what you're used to. (Some few lucky people find that one dose can stop a cycle or significantly reduce attacks.) So you need to be treating your attacks with something other than just busting. (Maybe you don't, since you've somehow managed this far without meds. Most people do.) Sumatriptan injections can't be used, because they interfere with busting, but oxygen is fine, and lower levels of verapamil don't seem to interfere with busting. Many people can stop an attack, or significantly reduce its severity, by quickly drinking an energy shot (such as 5-Hour Energy) or an energy drink (such as Monster or RedBull) at the first indication that an attack is coming on. And then there's the vitamin D3 regimen, which has proven to be very, very effective for a large percentage of people who do it. There is probably no good reason at all for you not to start on it right away. https://clusterbusters.org/forums/topic/1308-d3-regimen/

Thanks. Good to know.

I'm sitting here with my mouth hanging open at your story of amazing courage and resilience, harry'. Wow. We've had one or two folks here get on methadone for the CH pain and never be able to get off of it. So happy you have relief now! Thank you for letting us share the happiness for your success!

The D3 sometimes kicks in fast, and often doesn't. Unless you spend a lot of time every day naked in direct sun, you D levels are probably low. (If you had a blood test recently, your D level is probably included.) If you kicked it up above 10kIU/day, it probably wouldn't hurt you (to be clear, not a doctor here--just saying). If it's a high pollen season where you are, you could add some benadryl to the D3 regimen -- two or three standard doses/day. Agree with you about possible issues with steroids. This is just a relatively short course of steroids, roughly a week, so probably less long-term risk. Sumatriptan injections might be easier for you to get than oxygen. It really shouldn't be that way, but it seems most doctors are more comfortable prescribing a med they're familiar with than prescribing oxygen, which most of them aren't familiar with. I didn't mention the "busting" approach (shrooms and other psychedelics) because it seems you're probably nearing the end of this cycle. You can find a lot of information (some of it a little outdated, so be sure to check back if you go that route) in the numbered files in the ClusterBuster Files section here.

Wow, Mark, you have endured a lot. In the short run, try an energy shot or energy drink at the first sign of an attack. Some prefer them icy cold. Most shots (such as 5-Hour Energy) have more of what you're looking for -- caffeine and taurine -- than most drinks (such as Red Bull). When you get an attack, some people find that putting their feet into water that is as hot as they can stand helps. You could start taking melatonin at night, starting at 6-9 mg. Not sure how much that will help since your attacks are not nocturnal. It sure is a b---h that they hit you just as you're relaxing--not uncommon, unfortunately. You would want to start the D3 regimen right away: https://clusterbusters.org/forums/topic/1308-d3-regimen/ As soon as you can, you want a preventive medication. Usually that's verapamil (a blood-pressure med). And abortives. That would be injectable sumatriptan (Imitrex) and OXYGEN. You can read more about oxygen -- no side effects, very effective at aborting -- here: https://clusterbusters.org/oxygen-information/ Since you're, hopefully, just a few weeks from the end of your cycle, a prednisone taper might get you through. People without oxygen sometimes get some relief from inhaling deeply from a car or home air conditioner, or with their head up to their freezer. Some people have triggers in addition to alcohol. Foods with MSG in them seem to be high on that list. Glad you found us! Hope some of this will help you.

You've got the crucial core information from spiny. It's nice that you got the CH diagnosis so quickly, but the prescription is disappointing. You should have received (as spiny says) both injectable sumatriptan and oxygen. And maybe a steroid taper. In addition to the advice spiny has given you about possible short-run abortive strategies (energy shots/energy drinks; feet in hot water; ice cube in mouth) and the very important longer-term one, the D3 regimen, you might try melatonin at night starting at 6-9mg and working up from there (some people get up into the 20mg range). You should at least know about "busting" as an option. Look over the numbered files in the ClusterBuster Files section of this board.

http://www.ncbi.nlm.nih.gov/pubmed/27377982

Toni', I posted this at another thread, but I'm putting it here, too, to make it more likely that you might see it: >>> I just came across this recent discussion of treating CH in children. Of course, all that can be seen is the abstract, but it supports the "standard" CH meds -- oxygen, verap, and sumatriptan. http://www.ncbi.nlm.nih.gov/pubmed/27377982 <<<

I just came across this recent discussion of treating CH in children. Of course, all that can be seen is the abstract, but it supports the "standard" CH meds -- oxygen, verap, and sumatriptan. http://www.ncbi.nlm.nih.gov/pubmed/27377982