CHfather

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.

Yury, here's everything Batch says you need to take: Vitamin D3 (Cholecalciferol) 10,000 IU/day (Adjust as needed to keep serum 25(OH)D >60 to 80 ng/mL) Omega 3 Fish Oil 1000 to 2400 mg/day (Minimum of EPA 360 mg/day, DHA 240 mg/day) Calcium 220 to 500 mg/day (calcium citrate preferred) Magnesium 500 mg/day (magnesium malate, magnesium glycinate or magnesium citrate) Vitamin K2 (MK-4 & MK-7) MK-4 1000 mcg/day, MK-7 200 mcg/day (MK-7 preferred due to half-life) Vitamin A (Retinol) 900 mcg (3,000 IU) for men, 700 mcg (2,333 IU) for women Vitamin B 50 3-month course Zinc 10 mg/day Boron 1 mg/day Here's the file where he discusses it all: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 There's a "loading" process in there for getting D levels up fast (but it's good to know what your D level is, from a blood test, before you do any loading). He also says to take the calcium 8 hours away from when you take verapamil.

I just happened to run into this report tonight, while I was looking for something else. From a 2000 study of 789 people with CH >>Seventy-seven percent of respondents were smokers. Seventy-four percent stopped smoking in an attempt to improve their condition; however, only 3% experienced relief.<<< http://www.ncbi.nlm.nih.gov/pubmed/11091291

didg, denny answered your other questions at the other thread on this board . . . there's plenty of advice about making it into doses at the FB thread. sounds slightly complicated (measuring very small amounts and putting that into a capsule), but not beyond your capabilities.

Just to be sure, c't, you're doing the whole D3 protocol, as described here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804?

Yes, one with the purple person.

  Can't, really . . . You need to go there and request membership in the group, so a link won't take you there (I tried). It's the Cluster Headaches group (not the Cluster Headache Support Group).

I notice over at the CH Facebook group that there's discussion about the dalt having a big sinus-clearing effect as it works, for some people. The relevant posts are at the end (as of today) of the comments at the dalt thread that's pinned at the top of the page.

Good grief, Michael. You are one brave and determined clusterhead!!!

Mark is right about what TMJ is. Not uncommon as a misdiagnosis. Treatments include bite guards, physical therapy, various kinds of site injections, and even surgeries. (This reminds me of another category of things that might not have been listed yet in response to your original question. I don't have the energy to go back and look. Dietary things: special diets (e.g. vegan, gluten-free) and of course drinking huge amounts of water. Also, quitting smoking, quitting cannabis, trying cannabis . . .)

Alex, I'll try to answer some of your questions. Others will correct me where I'm wrong. Verapamil, at least at low doses, doesn't seem to interfere with busting, or at least it doesn't seem to completely block busting. So, some people (maybe particularly people with chronic CH) continue to use it. Since there are some health risks associated with long-term use, I think most people would recommend avoiding it if you can. A "hit" is just another word for an attack. I think a lot of people base their melatonin dosage on how they feel in the morning. With the symptoms you experienced, I think you are wise not to try high doses. The D3 regimen calls for taking amounts of D3 that are much higher than the standard recommendation. Arguments have been made (convincing to me) that the high doses in the D3 regimen are not dangerous. In fact, there was a recent medical study suggesting that the medically recommended doses were based on a mathematical miscalculation, and that they are way too low. It seems that if you have your vitamin D level checked regularly (it's a simple and relatively inexpensive blood test), you will not be at risk from the high doses in the D3 regimen. These are just my understandings.

Sorry for that loss, CHS. It's a very painful thing, indeed.

bwe', I'm glad you found us. You might want to consider starting a new thread and telling us a bit more . . . what medications you're taking, for example. There are other headache conditions that are somewhat similar to CH. You ought to get diagnosed by a competent neurologist. Your best bet for finding one of those is at a headache center. If your attacks are continuous for several hours (or throughout the day, as you say), it's possible that you might have something other than CH (such as hemicrania continua, which you can read more about here: http://www.ninds.nih.gov/disorders/hemicrania_continua/hemicrania_continua.htm). Treatments that work for CH might not work for other conditions, and vice versa (hemicrania continua, for example, is often treated effectively with a medication called indomethacin, but indomethacin usually does very little for CH). If you do have CH . . . . 1. It doesn't sound like you have oxygen. If not, that should be something you deal with right away. You might take a look at the CB Oxygen Page under the black and white MENU tab on the left side of the page. 2. Also, you might try drinking an energy shot or energy drink, or at least a strong cup of coffee, at the first sign of an attack. That helps a lot of people, and for most people it does not keep them awake even in the middle of the night. 3. And seriously consider the vitamin D3 protocol that has helped lots of people. Read about it here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Others will have other suggestions, but I think most would agree that you need to get a good diagnosis.

Nice idea, MG. Some others ones that some people have tried (sorry for any duplications): ketamine (Ajax reminded me of this one) sphenopalatine ganglion ablation sphenopalatine nerve stimulation microvascular decompression surgery botox injections deep brain stimulation sinus surgery TMJ treatments occipital nerve block hyperbaric oxygen trigeminal rhizotomy baclofen methadone nitrous oxide octreotide DHE (dihydroergotamine) clonidine sodium oxybate sex sodium valproate dietary therapies massage (Jeebs already listed chiropractic) TENS stimulation a whole bunch of topical creams and gadgets a whole bunch of OTC pain medicines (Goody's is the one I always remember, but Excedrin migraine, etc., too) I don't think anyone has listed energy drinks Depressing as hell, isn't it?