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Hi Bthr22, Just a thought. While you're doing all the above maybe your dad might have access to an emergency oxygen tank you could try out next time you get a ch. My first experience with oxygen was from a tank my husband brought home from the workshop at his office. He's an engineer. It wasn't even high flow but I used it at the first sign of a headache and it worked! I was then armed with further evidence when I went in to see my doc with this info and flat out wouldn't leave the office until I had an O2 script. When you get oxygen, don't wait until the ch is full blast. Get the o2 right away and you might abort the ch or at least get rid of it faster. Also, stay on the O2 for another 5 minutes after the headache ends. That sometimes helps if I'm getting them back to back. Hell yea, to any research or exploration you can do in school for ch. Let us know what you discover, I would looooovvveee to hear it!

I feel quite confident that you could start the D3 regimen right now at 10,000IU/day. Can't say that for certain, not being a doctor (although most doctors freak, wrongly, about such "high" doses), but I feel 98.72% certain that it's true. Don't know what's up with those links. For treatments, google [peter goadsby treatment of cluster headache]; for the JAMA oxygen article, google ["High-Flow Oxygen for Treatment of Cluster Headache"]; for our oxygen paper, go to the homepage of this site and look under the "Cluster Headache" tab. Work: There have been some documents created to explain cluster headaches to others. Unfortunately, since we can't attach things here, I'm not sure how to provide it to you. If you get oxygen and your workplace permits it (which I think they have to under ADA), you can bring a portable tank with you, and you'll abort your attacks in 10-15 minutes or less. Many people find that quickly drinking an energy shot or energy drink reduces the severity of attacks or even aborts them. The energy shot in combination with oxygen is usually highly effective. Research: I don't think there's been much conclusion reached, but the hypothalamus is definitely involved. How it's involved seems to be unclear. I'm not sure what to tell you here, except to google away. Maybe you'll be the one who figures it all out! Busting: Just to note that there are some effective busting treatments that are 98% guaranteed not to cause any kind of trip at all, and where the substances can be purchased and possessed legally. Just something to keep in mind. You are so much doing the right thing by attacking all this while you're not in a CH cycle, and I'm so glad you have your father as a potential resource!!!

Batch gets all his D3 regimen stuff at Costco. Yes, I think the Benadryl is more of a corrective when the core treatment loses effectiveness because of pollen than part of a preventive strategy. Speaking of Benadryl, a couple of people at the site here have found that a low histamine diet seems to help. I guess it's a pretty stern dietary regimen, and at least one of those people said he would do it only during a cycle.

Ryan, The table in the D3 file is the most recent daily intake recommendation that I know of. I was in touch with Batch a few months ago and he said he might be issuing a newer version, but that this was sufficient, and he would let us know if there was anything new. He adds Benadryl (2-3/day at the standard recommended dosage) during high-pollen seasons. Most people have very low D levels. Even if they're not low enough to be outside the normal range by conventional medical standards (which they usually are), they're low in comparison to what Batch has determined is needed to address CH. That's why I said earlier that you would almost certainly be safe starting with 10,000IU. In most people, it takes a whole lot of D3 over a long period to induce any kind of toxicity, and the toxicity is quickly reversed just by not taking more D3. Since you're not in cycle now, I would think that taking the 10,000IU and trying to get a blood test quickly would be the way to go (hoping maybe your father can help with that -- I'm pretty sure that a standard baseline blood test includes D levels). Batch recommends starting at 10,000IU for a few days in any event, just to be sure there are no unusual complications.

Hi justcurious! Do you have a Neuro? What you are describing is unusual to me. I would definitely want it checked out by a competent Doc. Your symptoms appear to be a bit different from what I have and what I have read. It is a good idea to start your own thread so you get more attention. A bit of back ground is usually a help too. Being in constant pain makes that a chore, I understand. But it can help you. You may be experiencing 'shadows' between clusters. Or you might not. I am concerned that you are talking constant pain and it is affecting both eyes, not just one. Never are you disturbing us by asking questions! We all started out that way. If you don't ask, you don't get answers, right? Ask away.

Hi there!! I agree that what you are describing is what many of us experience. Another check that you can do is to look at your pupils in low light. The pupil on the CH side will fail to dilate as much as the other one. The further you get into cycle, the more obvious this becomes. That is why your vision goes weird during a hit (attack). Most doc's use a high intensity light to see if they dilate at the same rate. But they do not check for failure to dilate. I had to show my Neuro this trick. Messes with your night vision. At work, try to keep some caffeine handy. 5 hour energy is very small and easy to keep handy. Hit it at the first symptom!! For some, an ice cube held against the roof of your mouth can help too. Working thru these is hell. But, you seem to be doing a pretty good job of it!!! And, you can hyperventilate with just air. Empty your lungs forcefully, inhale deeply, hold for a few seconds and repeat. Not the best solution, but it can help. You can also hit the caffeine just prior to an expected hit. It can postpone or prevent the hit sometimes. I use this method still. It helps me many days. I had to take a print out of Cluster Headaches to my PA initially and make him read it. He kept trying the migraine thing, since I am female. That was 15 years ago. I have had these since the 70's. They started to get really bad in the 90's. Like every night all night bad. The D3 regimen is a miracle for some CHer's. It is cheap and easy and good for you. For me, it reduces the intensity and slows the ramp-up. Some people get complete relief just from taking these vitamins. Well worth the effort. And, they are figuring out that a decimal was misplaced when they came out with the 400 units per day recommendation. It should be 4,000 for everyone. Oops! A specialist is a good idea, but you can get help without one if needed. They usually will order an MRI to rule out other issues. Any doc can order one. I am delighted at the research that you have already done on your own behalf!! Being a strong advocate for yourself is the way to go. Do not let them put you on a medication and tell you to come back in six months!! You will know if it is working in a few weeks. If it is not, get back to your doc. No reason to keep taking something that is not working. The main line of defense is usually Verapamil. If your doc prescribes that, he has some knowledge of the condition. Starting on a preventative before a cycle is much better than trying to attack it when the cycle is already up there. So, you are on the right track by jumping ahead of it. Perhaps CHF could attach those papers in a pm? Might work. There is a great one to show co-workers and employers. spiny

Well, in my view, you couldn't have described CH much better. It's hard to imagine what other condition you might have. So . . . the primary reason you need a diagnosis is to get meds -- principally, oxygen, verapamil, and injectable sumatriptan (and maybe a prednisone taper). Any doctor can make those prescriptions if, as you say, s/he diagnoses what you have as CH. So the first question is whether your family doc is educatable. S/he probably hasn't experienced patients with CH (or, as you say, has misdiagnosed it as something else, which happens very, very often). If you have any hope of enlightening your PCP, you could bring or send in advance something like this document: https://ouchuk.org/sites/default/files/downloads/precriber.pdf Nurses, nurse practitioners, and even assistants can sometimes be easier to educate than doctors. If you can get to a diagnosis, treatment options are clearly listed in many places. Here's one clear statement from the journal, Headache: http://www.achenet.org/assets/2/7/GoadsbyCluster.pdf (Even if you get this far, it might be hard for you to get an oxygen prescription from your PCP. S/he has probably never prescribed it, doesn't even know how to prescribe it, and will be worried and self-protective. We can cross that bridge if you come to it. The document you want to show is this one: http://jama.jamanetwork.com/article.aspx?articleid=185035. Oxygen is the #1 prescribed thing you want to have, by far. You can easily set up your own system using welding oxygen, and if you don't have O2 as you get closer to your next cycle, you should probably go this route. There's a discussion of oxygen here: https://clusterbusters.org/oxygen-information/) One reason to see a doc now is that the possible preventive, verapamil, is something you might want to start ahead of your next likely cycle. You should, in my opinion, start the D3 regimen right away. It helps to have a basic blood test to know what your vitamin D level is, since that could affect your dosages. Here's that information: https://clusterbusters.org/forums/topic/1308-d3-regimen/ This site was founded by people for whom "busting" -- using potentially psychedelic medications in amounts that might or might not result in what are commonly called "trips" -- turned out to be the most effective way of ending CH cycles or even preventing cycles from occurring. "Most effective" meaning that it worked and had no side effects except for the possible "trip." You should read the first five or six numbered files in the ClusterBuster files section to get a sense of what busting is and how it's done. Depending on your inclination in that direction, some folks would definitely urge you to do a bust soon as a possible preventive step. It's great that you're not suicidal. Imagine the world of not very long ago, when there was no internet, and people with this condition would go for years and years without an accurate diagnosis, if they ever got one. Being told they were crazy or overreacting. Having teeth pulled because of that molar pain. Having sinus surgery because of that sinus pain. Etc. and etc. And most of the treatments that work, such as the D3 regimen and busting, are disseminated almost entirely through the internet. And even oxygen didn't really get a medical seal of approval until recently -- and still, most docs don't prescribe it. You are on a good path for managing this condition! At the same time, you might want to make an appointment at a headache clinic now, since there can be really long waits. Cleveland Clinic has a good reputation for CH diagnosis and treatment, but it does seem that many major medical facilities have headache centers.