CHfather

Sorry. I should have remembered that you're in New Jersey, since I lived there for quite a few years myself. Assuming -- very reasonably -- that you got the US measurement, yes, 106 would be considered high. Anything else I know about that (e.g., is it "too high"?) would just be from googling. Batch says the highest level he's seen in someone who achieved strong remission or full remission is 149. Of course, you would want to discuss your level with your doctor, but I'd strongly urge you to also contact Batch. That seems to me (as someone who knows nothing, really) like a quick ramp-up from what we're assuming was a low starting level. Batch has observed a whole lot of people and tracked a whole lot of cases, and I think he'd be best for advising you about what to do now. Just put Batch in the To line of a PM.

J', is that 106 in ng/mL (the US measurement) or nmo/L (Canada, UK, EU)? Big difference: 30-100 is the reference range for ng/mL; 50-250 for nmo/L. So you're either pretty high, or not really very high at all. The average ng/mL Batch finds to counteract CH is about 84, which is about 210 nmo/L. Which you are would affect what you do next, and would help you decide whether the D3 regimen has been less than fully effective for you, or whether you're not there yet.

Thank you, Darren. Follow-up reports are much appreciated!!! I hope you are seeing the end of this cycle -- and I hope you will get on the D3. That's a lot of prednisone. Staying on the O2 for 5-10 minutes after you have aborted an attack can help stave off those next attacks.

The frustrating thing, at least for me reading this, is that somehow CH is not enough of a doggone disability. You should get a friggin medal and a lifetime pension from your organization for what you've accomplished while dealing with chronic CH. This study looked into cognitive impairment in people with CH, but didn't find anything significant. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4354253/ Maybe there are other studies showing different things. An interesting sentence from it: "When patients were asked to rate the severity of their own cognitive failures, patients with CCH reported higher cognitive failures than the ECH patients, and statistically significantly higher failures than HCs." ("HCs" being healthy controls.) But it didn't show up on the tests. You have done your homework, so I'm just gonna say a bunch of stuff that I feel pretty sure you already know. The one you don't know yet is the D3, which could be a game changer. Busting has been the salvation of many folks with chronic and episodic CH. A "last resort" that many wish they had turned to first. Do you know to try an energy shot (5-Hour Energy, for example) at the first sign of an attack? It can stop them, or reduce their severity. Batch says drinking icy cold water from a straw, aiming to create a kind of brain freeze, will help as much as the energy shot. Increasingly, it is being noticed that pollen worsens CH for most people. Many get some or a lot of relief from just taking Benadryl -- some every day, but more during high pollen seasons. If your business on the road is by car, can't you bring a small O2 tank with you? If it involves flying, you can usually arrange to get O2 at a destination, through your O2 supplier. (Again -- apologizing since you almost certainly already know all this. No need for you to reply.) Many people get quicker aborts with higher flow rates (buying the higher-flow regulator) and from the mask made for CH: http://www.clusterheadaches.com/ccp8/ Is verapamil ruled out because of your heart issues? The required daily dose can go as high as 960mg, which is much higher than most people are typically prescribed. The zonisamide if of course another anti-seizure drug. We've had some people here from whom other anti-seizure meds, such as gabapentin, have worked well . . . but for most the side effects are rough ("problems with thinking or speech; trouble concentrating" are among them). Elavil/amitryptiline has been very positively reviewed by some folks here, at least in the short run (we don't generally hear back from folks who find something that works). As usual with CH treatments, mileage varies all over the place.

Lloyd, I suppose the fact that I don't know what VML is suggests that I'm not going to have a good answer for you. This study was posted some years back, and it mentions demyelination. https://thejournalofheadacheandpain.springeropen.com/track/pdf/10.1186/1129-2377-14-64?site=thejournalofheadacheandpain.springeropen.com It's my could-be-wrong belief that there are some occasions in which CH has been shown to be caused by lesions, but most often it's the other way around, that CH (and migraines, which you mention) cause lesions. A lot of folks notice memory issues. There's a thread about it here -- https://clusterbusters.org/forums/topic/4279-short-term-memory/ -- and probably others. A few posts down in that thread, Bejeeber mentions something he takes to help with memory issues. Are you asking because you are thinking of applying for SSDI disability? Meanwhile, let's talk about what you're doing for your CH (if you want to). I'd bet that as a chronic you have tried lots and lots of things, but one thing we keep finding is that even with the medical/pharmaceutical things that have been tried, there has been some shortcoming in the prescription or the method of use that has kept it from being fully effective. What's helping you now? Oxygen? Verapamil? Imitrex?? Since you're just getting started here, let me strongly recommend that you read through the files in the ClusterBuster Files section, paying particular attention to the file about the "D3 regimen" (which you should almost certainly start right away) and the numbered files, which are about "busting."

As you can see, I've posted a lot here. Something I have never said, because it seemed so crazy, was confirmed again last night -- oxygen doesn't work for my daughter (she's the one who has CH) when the amount of oxygen in her tank is low. This has been true for years -- every time we switch out her tank for a full one, the O2 starts working again. I'm hoping that simple "solution" might help you. Do you do an energy shot (such a 5-Hour Energy) at the first sign of an attack? That helps a lot of people (and many, or even most, find they can get back to sleep).

Gail, lots of things will help. D3, which Batch has helped you with above, is at the top of that list. Oxygen is at the top of the list, too. Please tell us what you have done and are doing now for your CH. That will help us narrow the list and give more focused advice.

This regulator (the one on the left) is one many people use: https://www.harborfreight.com/catalogsearch/result/index/?dir=asc&order=EAScore%2Cf%2CEAFeatured+Weight%2Cf%2CSale+Rank%2Cf&q=oxygen+regulator Cheaper and set up better than what you would get at a welding supply store.

Mike', do you have the results back from this? I'm curious about what your baseline level is/was, particularly since it seems that the regimen has had some quick results for you.

Brandy', there's a link to the Vitamin D Wiki in the "D3 Regimen" file in the ClusterBusters File section. That link is https://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 You can read about the use of these substances, which is called "busting," in the numbered files in the ClusterBuster Files section. While all of them can be hallucinogenic, seeds, such as rivea corymbosa seeds, can be taken at non-hallucinogenic levels -- and those seeds are legal to purchase and possess (not legal to turn into the potentially hallucinogenic substance).

Regarding your prescribed meds, it is fairly common for people to require as much as 960mg/day of verapamil when they are in cycle (and it is believed that the standard type--not the time-release type -- is more effective). Your responses to increasing doses should be monitored. You can split your trex injections, to get two or three injections per syringe. See https://clusterbusters.org/forums/topic/2446-extending-imitrex/. There are some internet places, goodrx.com being the one I know best, where you can get coupons for lower prices on trex that you can use at any pharmacy. Have you asked your O2 supplier for a portable tank (an E tank)? Many people (20% or more, I'd say) use welding O2 for all their O2 needs. You could get a small tank of welding O2. The regulator from your large medical tank will fit on that smaller welding tank, but you'd probably want to buy an additional regulator and mask to keep at work. We can tell you more if you're interested. Have you tried chugging down an energy shot, such as 5-Hour Energy, at the first sign of an attack? Helps a lot of people. Melatonin at night, starting at about 9mg and working up can also help (some people get into the high20s before it really works for them). There's a new, VERY expensive gadget called gammacore that has to be prescribed by a doctor, which aborts attacks and at least for some people also seems like it works as a preventive. It doesn't seem from what I've seen to abort much better than O2, but it's highly portable. VERY expensive -- more than $500/month. But we can figure that will come down over time. The D3 should help you a lot. Follow it to the letter (and take the calcium part of the D3 regimen at least 8 hours apart from your verapamil). Many people here are quite partial to busting, which has given them their lives back, often after they had tried everything else first. Read about busting in the numbered files in the ClusterBuster Files section, and then ask questions if you're interested.

This is the mask (of which you can use just the breathing tube) that Denny was talking about: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit The vitamin D3 regimen has helped a lot of people. The creater of that regimen, who has followed it closely, is Batch. I'd strongly urge you to contact Batch -- who will be happy to hear from you and will respond quickly and supportively -- to discuss the regimen for your situation. To contact him, go to the envelope icon at the top right of the page, and type Batch on the To line. It's very rare for sumatriptan pills to work so well. You are fortunate in that regard -- thank goodness, since so little else seems to help you. Many people here have ended cycles and even sometimes prevented them through "busting." Busting is why this site was created. You can read about busting in the numbered files in the ClusterBuster Files section of this board. If you want to know more, all you have to do is ask (preferably at one of the closed boards, such as "Share Your Busting Stories."

Thanks, 'bob! I'm just curious about what it means when you say it works great as a preventive. I had noticed in the clinical trial results that it seemed to have some efficacy as a preventive (for people who were episodic but not chronic, as I recall). What level of prevention are you experiencing? Are you also using it as an abortive for attacks (if there are any) that are not prevented? How long have you had CH and what's your typical cycle like? Had you used pharma preventives previously? Doing the D3 regimen? A lot of questions, which of course you're not obliged to answer. Any input to help me/us weigh this substantial expenditure would be appreciated.

A terrible story indeed. I have heard that OUCH-UK can be helpful, particularly since the battle sometimes doesn't seem to end with getting the O2 prescription -- you might still have a struggle with the O2 provider. Good suggestion from greeneyes to look into the D3 regimen. You can read about that in the ClusterBuster Files section. There's also a post there about dividing Imigran injections so you get two or three from one injector (I think it's on the second page of that section; the title is "Extending Imitrex"). I'd guess the new preventive is probably Topamax. I don't think you say how high your verapamil dosage was, but many people need to get up to 960mg/day for it to be effective.

This might have been mentioned already (and I might be corrected by Batch since I am relying on memories of posts from many years ago), but it has been my understanding that Batch says you have to take the verapamil about 8 hours apart from the calcium in the D3 regimen. That's because verapamil is a calcium channel blocker. I assume that not having that separation is harmful to the effectiveness of the verap, the D3 regimen, or both.

Moxie, I'm sorry for not responding sooner. Been hectic here (mostly very unsatisfyingly hectic). I just want to wish you the best for a quick turnaround. You are so resourceful that I can't imagine you not making that happen. I remember your science fiction story (I think you must have pasted or attached a chapter of that here in the wayback days -- maybe even before you got christened as Moxie Girl). It was really good! I'm sure your other writing is, too. Of course, being so empathetic and supportive toward your friend with ALS has to be extremely draining, emotionally as well as physically. Your many friends and admirers here are pulling for you.

ddove, OXYGEN is a much safer, highly effective way to abort CH attacks. Although this file is kind of old, it will give you the basics if you don't know them: https://clusterbusters.org/forums/topic/1433-10-oxygen-information/ The D3 regimen is good for you, and an excellent preventive. If it's sumatriptan injections you're using to abort attacks, at least consider splitting your doses: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

I'd love to able to see this. Anyone have access? Note part in red. http://www.docguide.com/prescribing-oxygen-cluster-headache-guide-provider?tsid=5 Prescribing Oxygen for Cluster Headache: A Guide for the Provider; Tepper S, Duplin J, Nye B, Tepper D; Headache (Aug 2017) BACKGROUND Oxygen is the standard of care for acute treatment of cluster headache. CMS, the US Centers for Medicaid and Medicare Services, has made the indefensible decision to not cover oxygen for cluster headache for patients with Medicaid and Medicare insurance, despite the evidence and professional guidelines. Commercial insurance generally covers oxygen for cluster headache. OBJECTIVE This is a'how-to'guide for successfully prescribing oxygen in the US. SUMMARY Prescription information is provided that can be incorporated as dot phrases, smart sets, or other standard templates for prescribing oxygen for cluster patients. In many states, oxygen is affordable and can be prescribed for Medicaid and Medicare patients who wish to pay cash. Welding or nonmedical grade industrial oxygen is almost the same cost as medical oxygen. However, it is less pure, lacks the same inspection of tanks, and is delivered without regulators to provide appropriate flow rates. Patients who pay cash should be strongly encouraged to buy medical oxygen.

Don' and CCH', would you mind saying one or two learnings that stand out for you? Could be relatively "little" things (I remember the demo many years ago by Racer and the BB about holding the O2 in the lungs for a while before exhaling -- never had heard or thought about that until then); or maybe bigger things that will change your overall approach; or many something about treatment possibilities in the pipeline. I get it that the camaraderie and support is #1; just wondering about any other takeaways. Thanks.

Since many folks with CH need as much as 960mg/day for verap to be effective, a 40mg tablet isn't going to be very helpful to you in any event. And certainly the effects on your heart should be monitored. Also, if you're doing D3, you have to be sure to take the calcium at an 8-hour separation from the verapamil, which is pretty difficult to arrange. Here's what one leading CH expert has written about verap: Verapamil is more effective than placebo and compares favorably with lithium. Clinical practice clearly supports the need to use relatively high doses for CH, certainly higher than those used in cardiological indications. After obtaining a baseline EKG, start patients on 80 mg three times daily; thereafter the total daily dose is increased in increments of 80 mg every 10-14 days. An EKG is performed prior to each increment and at least ten days after the dose change. The dose is increased until the cluster attacks are suppressed, side effects intervene or the maximum dose of 960 mg daily is achieved. Side effects include constipation and leg swelling and gingival hyperplasia (patients must monitor dental hygiene closely).

People often are just confused about terminology, but just to be sure . . . what he wants to be using is a non-rebreather mask. With a "rebreather" mask, some of the exhaled breath goes into the bag where it's mixed with the O2 for the next breath; with a non-rebreather, the exhaled breath does not go into the bag, so each inhale is pure O2, which is very important.

Here are two emergency things that might stop an attack or at least lessen it when O2 and energy drinks aren't helping.. Drink ice water through a straw on the CH side of his palate. This is recommended by Batch, who knows what he's talking about. He says to try to get something like brain freeze to happen using the ice water. The other, which works for some, is to sit/stand with his feet in a bathtub of water that's very hot. An ice pack might help. If he's been using an energy drink like Red Bull, he might have better success with energy shots (such as 5-Hour Energy) which have more caffeine and taurine than the drinks (even though they are smaller). I think it's also worth some concern when both methods that have worked for him suddenly fail that maybe he's experiencing some other condition that warrants a trip to the ER or a call to the doctor. An injection of sumatriptan (Imitrex) will almost always stop an attack. I understand that the ER is likely to just extend the torture and give him things that don't help. But maybe you can insist on trex, and maybe, as I say, they might need to do some other diagnostic test (MRI, probably) to rule out it being something else.

Rose, FYI. Who knows -- Your info might have already helped someone. https://clusterbusters.org/forums/topic/5183-brand-new-and-very-concerned/#comment-53629

Thank you so much for that lucid and helpful discussion of HC/CH. Now if I can just remember who it was very recently that said they had constant 3-level pain, so I can let him/her know to look into HC. And, for what it's worth, I'm really sorry for all the crap you're going through.

Was your husband calling the welding company about getting welding O2 instead of your medical O2? That could turn out to be a more affordable solution for you (cost of tanks + refills + between $45 and $65 dollars for regulator and mask (~$45 is you use a standard mask; ~$65 if you get the mask specially designed for people with CH). Since you're the first person who's been here who has both HC and CH, I have three questions that might help some other folks down the line, but I know you're busy figuring things out, so if this isn't a good time to answer them, I completely understand. (1) What's the difference between your HC attacks and your CH attacks? (2) Does oxygen help with your HC attacks? and (3) I assume it's indomethacin you're taking for the HC -- or is there something else? Quite often people report things to us that at least make it seem like they might have HC even though they have been diagnosed (or self-diagnosed) with CH, so any info that would help sift through that would be great. And we always say that HC is treatable with indomethacin, but that it can be quite hard on the digestive tract, so that's why I'm curious about what you're treating it with.