CHfather

Great to hear from you, Purp! You have a place in my heart, and I'm glad to read that you are in a relatively good place compared to when you were first posting here.

Unless you're receiving insurance from a government agency (Medicare, VA, Medicaid), your insurance should cover it. As Jon' and 'Denny say, welding is a very viable alternative. You gotta have O2!! You ask about prescription meds, so starting there (nothing new that I know of) . . . Verapamil is commonly prescribed as a preventive. Short-acting (not timed-release) is better. Prescriptions can go up to 960 mg/day or sometimes more before they are effective; most doctors don't prescribe that. You should be monitored as you start it and as you ramp up. I'm always puzzled about Maxalt. Is it just in pill form? Pills usually don't work well, but you say the Maxalt is effective. Nasal spray and injections generally work more reliably and faster. Many people are convinced that triptans extend cycles and make attacks worse, so getting O2 and using energy shots and other abortive strategies is pretty important. Among other "home-remedy" abortives are sucking ice water through a straw so it's hitting the roof of your mouth (to cause "brain freeze"); deeply breathing very cold air from an air conditioner or freezer; and standing in a bathtub of very hot water. Here's a link to info about the D3: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 I'm gonna say that 90% of people who do the regimen correctly get some relief from it, and I'd say maybe two-thirds, or even more, get exceptional relief. It is not likely to help you right away, but the sooner you start it, the sooner it will help. There's also a thread here about vitamin B1 being very helpful: https://clusterbusters.org/forums/topic/5417-b1-oral-high-dose-thiamine/

You might take a look at this thread: https://clusterbusters.org/forums/topic/5417-b1-oral-high-dose-thiamine/ Are you doing Benadryl along with the D3 loading?

This is valuable information, thank you. Just to continue the comparison, 5-Hour Energy has 215 mg of caffeine (!), and costs about $48 for 24 at amazon ($2/bottle).

Thank you. I'm curious -- Is there taurine in that supplement? Asking because some/many think that caffeine + taurine is more effective than just caffeine.

The message from fella here talks about relieving a knot. https://clusterbusters.org/forums/topic/5325-neck-muscle-tension-connection/#comment-54530 As I remember it, there were others who had massagy/pressury strategies for dealing with it. You could type the word knot into the search bar on the upper right of the page and see what else comes up.

gods', I am familiar with EMDR. It has been very helpful for me related to trauma and stress (remember -- I don't have CH (my daughter does), so I can't say about helping with CH specifically). As I understand it, tapping can be a form of EMDR. I tried briefly to find a simple article or youtube video about how to do EMDR and/or tapping, for anyone here who might be interested, but I didn't find anything quickly. I am sure there are many things out there, so anyone interested should probably do a little searching.

Basic finding: Oral steroids generally more effective than occipital nerve injection of steroids as transitional treatments. Half or fewer of the subjects received full temporary relief of symptoms with either method (50.6% with oral prednisone, 36% with injections). https://www.docguide.com/greater-occipital-nerve-injection-versus-oral-steroids-short-term-prophylaxis-cluster-headache-retro?tsid=5 OBJECTIVE To investigate our experience with oral steroid and greater occipital nerve (GON) injection with steroid as transitional treatments for cluster headache. BACKGROUND Cluster headache is a primary headache disorder characterized by multiple episodes of intense unilateral pain with autonomic features. During cluster headache attacks, transitional therapies are useful while prophylactic dosages are initiated or increased. There are limited data comparing the efficacy of oral versus injected transitional treatments. METHODS We retrospectively reviewed charts for patients evaluated with cluster headache at our center and captured episodes of transitional therapy utilized from 1995 to 2014. Treatment benefit was categorized into complete, partial, or no response. RESULTS Forty-three patients received transitional therapy over a total of 151 encounters, of which 140 were available for analysis. Encounters featured oral steroids (81, 57.9%) and GON injection (59, 42.1%). Of the 40 patients with treatment response data available, 24 patients received only one type of transitional therapy and 16 patients received both therapies. More encounters featuring oral steroids versus GON injections led to at least a partial response (82.7% vs 64.4%) and to a lesser extent a complete response (50.6% vs 35.6%). Among 16 patients treated with both therapies, 8 (50%) responded to both and 6 (37.5%) responded only to oral steroids. CONCLUSIONS Our single-center, retrospective data suggest the majority of patients with cluster headache responded to both prednisone and GON injections for transitional treatment, with a higher response to oral steroids. Our results may inform study design for a randomized trial, which is warranted.

https://www.docguide.com/pre-attack-signs-and-symptoms-cluster-headache-characteristics-and-time-profile?tsid=5\ Introduction: In contrast to the premonitory phase of migraine, little is known about the pre-attack (prodromal) phase of a cluster headache. We aimed to describe the nature, prevalence, and duration of pre-attack symptoms in cluster headache. Methods Eighty patients with episodic cluster headache or chronic cluster headache, according to ICHD-3 beta criteria, were invited to participate. In this observational study, patients underwent a semi-structured interview where they were asked about the presence of 31 symptoms/signs in relation to a typical cluster headache attack. Symptoms included previously reported cluster headache pre-attack symptoms, premonitory migraine symptoms and accompanying symptoms of migraine and cluster headache. Results Pre-attack symptoms were reported by 83.3% of patients, with an average of 4.25 (SD 3.9) per patient. Local and painful symptoms, occurring with a median of 10 minutes before attack, were reported by 70%. Local and painless symptoms and signs, occurring with a median of 10 minutes before attack, were reported by 43.8% and general symptoms, occurring with a median of 20 minutes before attack, were reported by 62.5% of patients. Apart from a dull/aching sensation in the attack area being significantly ( p < 0.05) more frequent among men and episodic patients, compared with women and chronic patients respectively, no other differences in the prevalence of pre-attack symptoms were identified between groups. Conclusion Pre-attack symptoms are frequent in cluster headache. Since the origin of cluster headache attacks is still unresolved, studies of pre-attack symptoms could contribute to the understanding of cluster headache pathophysiology. Furthermore, identification and recognition of pre-attack symptoms could potentially allow earlier abortive treatment.

Sorry to have missed this. My answer would have been "It doesn't matter much. Some people recommend empty stomach and some say a little food helps with the absorption." Hope it was successful!

Thank you! I'm honored just to be included in the company of the great people you name, and very glad that we and so many other folks here have been able to be helpful to you. This B1 thing seems promising to me -- https://clusterbusters.org/forums/topic/5417-b1-oral-high-dose-thiamine/ -- and of course there's a lot of hope that this new med could be a giant breakthrough: https://clusterbusters.org/forums/topic/5489-lilly-cgrp/

tmac, I'm hoping that Batch will respond to this . . . He's the one who knows why the other supplements are necessary, but I believe you can have substantial longer-term issues from not taking them. I think that hypercalcemia is one of those issues: https://www.mayoclinic.org/diseases-conditions/hypercalcemia/symptoms-causes/syc-20355523

Thanks, J! Will try at first opportunity and let you know.

Yes, busting refers to substances that include psilocybin and certain seeds. You might look at the numbered files in the ClusterBuster Files section to see whether that interests you or not. As far as I know, the Thiamine/B1 that I linked you to doesn't interfere with the D3 regimen.

Maybe take a look at this thread? https://clusterbusters.org/forums/topic/5417-b1-oral-high-dose-thiamine/ D3 + Benadryl are the only preventives you're using? You're not busting, right?

Yes, it does. THANK YOU!!!!!

Razor, my daughter is just starting to feel those twinges that indicate a beginning to her cycle, and I've sent her some B1. I've read through your wonderful and generous thread here, and also read the article. I wonder if you could give me your best guesses about a few things. 1. It seems like after initial experimentation, you settled on a base dosage of 300mg in the morning, supplemented by another 100 or 200 during the day as circumstances (such a barometric pressure or shadows) seemed to call for. Am I right about that? Is that what you're doing now? Do you take more than 300mg on days when you don't feel you need it for a specific situation? 2. Initially, you started with 200mg all at once on Day 1, and 300mg all at once on Day 2, and then on Day 3 you took 400mg in 100mg doses spread throughout the day. From what I'm reading, you later tried different modes, sometimes all at once and sometimes spread out during the day. Was there a reason you changed from all-at-once dosing to spreading dosing out during the day in some of your daily dosages (side effects, maybe), or were you just trying out different ways of taking it? 3. I know you're not a doctor, so you might not want to comment on this, but I'd welcome any comment you have. In the questions submitted to him, the doctor recommends an initial dose of 500mg for episodics, and he recommends always taking the whole dose with breakfast. Do you have any reactions to these recommendations? (In the article, it says to start at 250mg on Day 1 to watch for side effects, then go up 250mg more on Day 2, and then up 250mg more on Day 3. I wonder if he has subsequently concluded that an initial 500mg dose is very unlikely to have side effects, and also that it is not necessary to go as high as 750mg? Not really asking you this, just noticing the difference between the article and his subsequent advice.) Thank you!!!

As Jon said, relationship with the store manager is a critical factor. We first got O2 from an "ignorant" Lincare store manager, but one who was willing to listen, read, and learn, and became exceptionally helpful. Call up. I worry that if you don't call, you might not get a tank at all, but a "concentrator" that makes O2 from room air. You don't want that. Also, make sure they're giving you a nonrebreather mask, not nasal cannula or a rebreather mask, and, as Jon and Denny suggest, at least one big tank for home use and one smaller tank for portability. (We eventually went the welding O2 route and it generally has been better, except for the schlepping of tanks that Jon mentions.) We provided the store manager (and the respiratory therapist who worked there) with several journal articles. The bedrock one is this study: https://www.ncbi.nlm.nih.gov/pubmed/19996400 While it calls for 12 lpm, most regulators that go up to 12 will also go up to 15, which is a good starting-place. (In my opinion, you will get some relief at 12, and maybe even full relief at 12/15.) On the right side of the page, under "Similar Articles," you'll see another article, about masks, and if you click on that one and look under "Similar Articles" you'll see several more potentially relevant ones. But as you say, just getting a basic system probably should be your immediate priority. Another O2 mystery: Why would a doctor who knows enough to prescribe O2 without your having to ask, write you a 10lpm prescription? Amazing.

Mark, note that effective dosages of verapamil for CH can go as high as 960mg/day (sometimes even more). That's more than many neurologists are going to prescribe (more than is used for the primary purpose for which verap is prescribed, treating high blood pressure). Is your O2 working better now? Are you taking anything else? For example, the D3 regimen that helps many people: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

You probably know that lots and lots of people with CH have had teeth-related stuff done without having any positive effect on their CH. If you do have necessary dental work done, keep in mind that some dental anesthetics are triggers. Anesthetics containing epinephrine (such as Xylocaine) have been identified by some people as triggers. Nitrous oxide ("laughing gas)" has been identified by some people as a trigger (other people say it isn't a trigger for them; and some even think it's an effective abortive). Prilocaine seems not to cause bad effects. Maybe consider trying an energy shot with the O2. Some people have said they work better in that combo than alone.

As we often say, Mike, Welcome, and sorry you have to be here. Is the vitamin regimen the one that includes vitamin D3, Omega-3, calcium, and other supplements? That has worked well for many people, but it's generally not instantly effective, because you need to get your vitamin D levels up. Here's a link to more info: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 If this is the vitamin method you're using, be sure you're doing all the ingredients and consider the "loading" approach to get your D level up faster. Great that you had a friend who could hook you up with O2! Many people find that some caffeine at the start of the oxygen helps get rid of the attack. For some people, some strong coffee is enough; most find that an "energy shot" such as 5-Hour Energy or an energy drink such as Red Bull works better. Are you getting full aborts with your O2 within 10-12 minutes? If you get to see a sane neurologist (not one who's relying on prednisone and telling you that you might grow out of CH), you will want a prescription for O2. The other prescription meds that are typically prescribed are verapamil as a preventive and sumatriptan as an abortive. Verapamil doesn't kick in fast (usually prednisone is used as a "bridge" for some pain-free time while the verap takes hold). Sumatriptan in injectable or nasal-spray forms (not pills -- they are pretty much useless) can be used to stop an attack when the O2 isn't working. We can talk more about those things if you get prescriptions. Read through the files in the ClusterBuster Files section that seem relevant to you. The numbered files address the topic of "busting," which many people have found to be the best strategy for them.

That's pretty essential, the mask with the air bag (reservoir). Your mask will probably have a small circle of open holes on one side. Cover that with tape, or with your thumb, as you inhale (so you're inhaling only pure O2). Be sure you have a tight seal with the mask to your face. Cut off the strap (so if you fall asleep the mask will come off). Is your oxygen in tanks (not a machine that makes oxygen)? Also very important. And a regulator that goes up to at least 15 liters per minute. And good breathing strategy. You'll find your own strategy, but for many it's deep breaths and very forceful exhales at the beginning (almost doing a "crunch" to force air out of your lungs). Some people hyperventilate with room air for 30 seconds before their first O2 inhale. Hold the O2 in your lungs for a few beats. Look down toward your feet as you are doing it all. For many, a shot of caffeine while starting the O2 speeds the abort: could be some pre-made strong coffee; many use the 2 oz. energy shots or energy drinks. Many have found that going beyond the standard setup of the basic mask and 15 lpm makes a big difference, but let's see how it goes for you with what you have.

wimp', it is good to read. As you would quickly see from your reading, the most significant thing you should have is oxygen. If you had it before and it didn't help you, you probably need to try it again, with a better system. You should almost certainly also start the vitamin D3 regimen. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 And, given your past experience, the numbered files in the ClusterBuster Files section might be of interest to you. Maybe look at the "Triggers" document when you're over there. There's lots more, of course, but I think those might be the current highlights for you. Ask anything, any time.

Okay, so this has been making me pretty nuts. I guess at this point I'm asking whether there's an admin who can help me out . . . I have an idea what's going on, but no way to correct it. I'm working an a PC (not phone or tablet). Using my standard Microsoft Edge browser, I see none of the things either of you (Pebbles and spiny) mention. Using Google Chrome, I DO see them. HOWEVER, I still get no attachment or paperclip option. So, trying everything I could think of, I clicked the down arrow next to my username at the very top right of the page. One of the items on the dropdown menu there is "Attachments"(!!) Things I have previously attached are there, going back to 2013 (nothing more recent than 2014), along with a message saying "You have used 569.07 kB of your 500 kB attachment limit." So I suppose that must be why I get no in-post attachment options today -- because I used all my attachment space up in 2013 and 2014. This seems bizarre, but I can't fix it, unless maybe I go back to those '13 and '14 posts and delete them.

Thank you! The only thing I see in the lower left here is the "Notify me of replies" checkbox. Gonna see what happens if I send this and then "edit" it. (Nope. Maybe it's my operating system or something.)