CHfather

Gosh, that's frustrating and disappointing. If you want to give it one more try, you could PM 1961mom, who is one of the founders of that group. She was once very active here, and still visits from time to time. You can PM her from here: https://clusterbusters.org/forums/user/17179-1961mom/ She knows who I am (she knows who many people here are), so if you want to use my handle when you communicate, please go ahead and do that.

Nice! Thanks for letting us know, and congratulations for taking responsibility for your care.

I have heard that "Cluster Headache Support Group" on Facebook is quite hostile to anything non-pharmaceutical. The friendly one is just called "Cluster headaches."

interestingly, dr. goadsby, the ch expert, has compared the pain of ch to having a limb amputated without anesthetic.

yes, you're right--ibuprofen won't touch a real CH attack. the nasal spray might be sumatriptan, which actually can help with a CH attack. if it is sumatriptan, i suppose you might try it and see what happens. i have never heard of CH presenting with such mild symptoms that a person doesn't even bother taking meds to try to relieve it. most people remember very well their first CH attack, and there was nothing mild about it. then again, i think i know a lot about CH, but i was surprised to see a red eye listed as a common symptom in so many places, so i can't say for certain that your doctor is wrong, as much as i think that she is.

gosh, this is horrible. i have no idea what to say about your eye or your pain, or why someone at the ER would be expected to figure out what's going on. CH pain certainly isn't going to be continuous, and relatively mild, for five days. has this doctor prescribed anything for your (supposed) CH?

Welcome! I look forward to your participation here! Thank you for coming here.

Just adding my agreement to what jms and Jeebs have said -- from the symptoms you describe, it does not sound like you have CH. That oxygen didn't help is also a clue, but since oxygen is often administered ineffectively for treating CH and you don't say how it was administered to you, we can't rely on that. Red eye is very commonly reported as a symptom of CH, although like Jeebs, I haven't heard about or seen much of it in actuality. This is from Harvard Medical School, for example: >>The eye on the painful side is red and watery<< (http://www.health.harvard.edu/pain/headache-when-to-worry-what-to-do); and this is from our own ClusterBusters website: >> On the same side as the pain, the eye may become red . . ." (https://clusterbusters.org/about-cluster-headache/).%C2'> There are plenty of others that can be found from googling "red eye" and "headache." But red eye does not equal CH, and nothing else you describe sounds really CH-like to me.

Just adding my agreement to what jms and Jeebs have said -- from the symptoms you describe, it does not sound like you have CH. That oxygen didn't help is also a clue, but since oxygen is often administered ineffectively for treating CH and you don't say how it was administered to you, we can't rely on that. Red eye is very commonly reported as a symptom of CH, although like Jeebs, I haven't heard about or seen much of it in actuality. This is from Harvard Medical School, for example: >>The eye on the painful side is red and watery<< (http://www.health.harvard.edu/pain/headache-when-to-worry-what-to-do); and this is from our own ClusterBusters website: >> On the same side as the pain, the eye may become red . . ." (https://clusterbusters.org/about-cluster-headache/).%C2'> There are plenty of others that can be found from googling "red eye" and "headache." But red eye does not equal CH, and nothing else you describe sounds really CH-like to me.

In terms of workability, RC is far preferable to HBWR. I don't know what quality you'll get from a shop (just don't know; not saying it will be poor quality). www.tranceplants.net is based in Montreal, and is considered a top-quality supplier. Might be less expensive, too. In any event, you'll want at least 100 seeds for two hopefully-preventive doses. Some folks actually find the self-injecting preferable (and two or three jabs for the price of one, plus less aftereffects, is hard to ignore as a benefit).

You've made a very eloquent description here of what CH is like for many people, l'm. I am sorry that it's like that for you, too. I'm glad you are on the D3 regimen, and I hope you are doing all the elements of it. I would make a few suggestions: 1. If you can come to a ClusterBusters conference, you will meet lots of people who will know exactly what you are feeling. The 2016 conference will be in Austin, Texas, sometime in the fall. I think the dates have been announced, but I'm not sure what they are. 2. Some people find that they can hold off cycles by preventively "busting" -- using low doses of drugs that are hallucinogenic at higher doses (psilocybin mushrooms and rivea corymbosa seeds are the most common). Have you read about that here? Rivea corymbosa (RC) seeds are inexpensive, legal to buy and possess (just not legal to consume), and there is virtually never any kind of psychedelic experience associated with taking them. Since this is the time of year when might start a cycle, it might be a good time for you to try some RC. If you want to know more, ask. 3. Do you know about extending Imitrex to get more injections from each injector? Saves money, still works, and you're taking in less of that medicine. You can read about it here. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ 4. Oxygen (maybe combined with an energy shot or energy drink) can stop an attack pretty quickly, so you that don't need Imitrex for every attack, or even most attacks. Many people go to that first before they use the Imitrex. 5. The Facebook group "Cluster Headache" is a very, very supportive group of people. You might consider joining that group. I have heard that another FB group, "Cluster Headache Support Group," is also good as long as you don't mention busting . . . but the people I know best and like most are at the "Cluster Headache" group (it's the one with the "pinned post" at the top about 5-Meo-DALT, which might also be an option you'd want to consider). None of this will work any miracles (well, it might, but no promises), but cumulatively it might have some benefit for you. Wishing you the best.

The new sumatriptan injectors are harder to get open, but not that hard. Plenty of online videos to show you how. Yes, quantity and cost are still issues, but if you can get three quick aborts per injector, it's a lot less bad. You gotta give your O2 the best chance of succeeding -- high flow rate (25 lpm or more), good mask, maybe an energy shot or some other likely abortive just as you get on the O2 . . . a lot of folks who weren't helped by more conventional setup are getting really good aborts with this one. The D3 has a really high success rate, sometimes pretty quickly. Please give it serious consideration.

Coyote, What Jeebs said. You're making it too hard on yourself using just the imitrex tablets. Get the sumatriptan injectors, then split up your doses. Get oxygen. Start the D3 regimen (https://clusterbusters.org/forums/topic/1308-d3-regimen/). Down an energy shot or energy drink at the first sign of an attack. (Tie a string around your finger so you remember this.)

Nikkk, just a few words about habituation and the five-day wait. It has been observed that when a dose of MM is taken, it seems to remain in the brain's receptors for some time, blocking the effectiveness of new doses. The five-day wait after a full dose is based on that principle -- the new doses can't get into the blocked receptors until those receptors have been cleared, which takes approximately five days. This is all rough, theoretical, and anecdotal. It might be three days, or it might be no days, or you might be able to override the effect by taking more each time. We go with five days because it has shown itself to be effective. If the theory is correct, you might reach the point where small daily doses add up to blocking the recptors. We have urged you to get oxygen, and I'm urging you again. You can abort attacks without all you're going through, and then you can be more free to try more substantial doses every five days. Why not get oxygen? If your dislike of having a tank near your bed somehow outweighs the fact that it will stop your attacks, you can return it.

Thank you again for the update. I'm really happy that it's working for you. You are not the first person to fear that an oxygen tank would somehow be a depressing or discouraging sight. I would say that for many people, while they wish they didn't have to have it, the tank can become kind of beautiful because of what it does for you, and knowing it's there can help them handle having CH better because they know that they can treat most attacks before they get out of control. But you will make that decision as it makes sense for you. I do recommend that you try the whole D3 regimen. Since D3 is naturally created almost entirely from exposure to sunlight (very few foods have it), we would guess that your vitamin D level is almost certainly very low, at least in the winter. Bringing the D level up quickly has really helped a lot of people. Best wishes to you, and thank you for being here.

I was just looking for something else over at ch.com, and came across this. Can't vouch for it in any way, but just passing it along: >>If you do decide to get your D3 and it's suppliments on line, you should try iherb.com. They do all the large doses that we need and the shipping cost is very reasonable. Only about £5 from California to UK and arrives in less than 2 weeks.<<

Nikkk, what a great story!!! How smart of you. Yes, people use psilo to stop attacks! You probably also had good effects from the coffee, exercising, and breathing the cold air, too. Most people also use psilo to end a cycle, by taking it every five days. Maybe a little more than you took. I hope others will comment more about this. You could also try the vitamin D3 protocol, which is described here: https://clusterbusters.org/forums/topic/1308-d3-regimen/ This is also a very effective strategy for many people for ending cycles and preventing future attacks. And you should get a prescription for oxygen, which can you your best friend for stopping individual attacks. Your doctor should prescribe oxygen, with a regulator that goes up to at least 15 liters per minute and a mask that is called a non-rebreather mask. Thank you for writing to us. You are on the right track.

Over the past three days the annual "Headache on the Hill" event took place, in which people with CH and other "headache" conditions advocated with members of the Senate and the House. The folks who do that deserve the highest praise and gratitude from us. Beyond that, I don't know what else you can realistically do. There is some promising research being done by drug companies on CGRPs. http://www.webmd.com/migraines-headaches/news/20150618/new-drugs-might-prevent-migraines-before-they-start Although the research is focused on migraines, some top CH experts think these drugs will help prevent CH attacks, too. Meanwhile . . . Is your son using all the best anti-CH resources -- oxygen, the D3 regimen, energy drinks, maybe some pharmas for prevention and aborting . . . busting?

Can't answer your practical questions, Red', but lots and lots of people have had great success with the D3. It's really a must-do, or at least must-try, for anyone with CH. At another thread here, Tex Mex just posted yesterday about how it has changed his/her life.

didg, what's he doing for his ch these days? d3? any pharma preventives or abortives besides oxygen (which i think i remember he has)?

I have no idea of the answer to your question -- just wanted to say that every time I see you sign in here, it makes me happy for what you have accomplished.

Oh, I am so very sorry to read this. Sympathy and wishes for healing. Have we talked about allergies? Batch says the D3 regimen loses effectiveness when there are high pollen counts. I think that he and others now regularly take normal doses of benadryl a few times a day, or at least when pollen counts (which you can check on the internet) are high. Don't know whether this might also apply to colds/flu.

Yes, a shame. Those of us who are still in town as the tumbleweed blows through try to help as we can. I suspect none of us knew anything about that substance you were trying, and so couldn't really comment or give any advice. I'm sure that more than a few people have read your posts with interest, and appreciated your making them. I hope it will turn out to be successful for you and you get plenty of PF time.

Didg, I'm very sorry to hear that things were so rough. I think most folks here would agree with you about the impact of barometric changes. Mostly, sending you my best, and hoping maybe the worst of what you were going through is over.

So Tony Only corrected me when I suggested that energy shots/drinks are only effective at the time of an attack, saying that he used them successfully as preventives recently, and spiny said the same about the V-8 Fusion. That was all news to me. Has anyone else had success with that preventive approach? If so, did you learn anything valuable about that method -- maximum/ideal time between the drink and the expected attack, for example? I'm really interested in learning more about this.