CHfather

Thanks, CCH.

There have been some posts here, and some reports at conferences, about ketamine. Here's a link to one, from a beloved CB member, "Ricardo." https://clusterbusters.org/forums/topic/4780-ketamine-conference-talk/#comment-50317 You can probably find more by putting ketamine into the search box, top right side of the page. FWIW, there's a pharma drug, rapastinel, not yet on the market but due fairly soon (next year or two), that works on ketamine receptors without ketamine side effects. So, far, in extensive clinical trials (not for CH, but for depression), zero side effects, period. I have some high hopes for this, though it might, please Lord, be surpassed in efficacy and sooner availability by the monoclonal antibodies currently being tested with what seems to be good promise against migraine and CH. https://en.wikipedia.org/wiki/Rapastinel

Neurosurgeons looking for the right place to put electrodes in CH surgery. I would understand this better if I knew what terms like "76 ± 33%" mean. I can think of three possible meanings, all with very different messages for the effectiveness of what they were doing. Can someone tell me? http://www.docguide.com/optimal-deep-brain-stimulation-site-and-target-connectivity-chronic-cluster-headache?tsid=5 OBJECTIVE To investigate the mechanism of action of deep brain stimulation for refractory chronic cluster headache and the optimal target within the ventral tegmental area. METHODS Seven patients with refractory chronic cluster headache underwent high spatial and angular resolution diffusion MRI preoperatively. MRI-guided and MRI-verified electrode implantation was performed unilaterally in 5 patients and bilaterally in 2. Volumes of tissue activation were generated around active lead contacts with a finite-element model. Twelve months after surgery, voxel-based morphometry was used to identify voxels associated with higher reduction in headache load. Probabilistic tractography was used to identify the brain connectivity of the activation volumes in responders, defined as patients with a reduction of ≥30% in headache load. RESULTS There was no surgical morbidity. Average follow-up was 34 ± 14 months. Patients showed reductions of 76 ± 33% in headache load, 46 ± 41% in attack severity, 58 ± 41% in headache frequency, and 51 ± 46% in attack duration at the last follow-up. Six patients responded to treatment. Greatest reduction in headache load was associated with activation in an area cantered at 6 mm lateral, 2 mm posterior, and 1 mm inferior to the midcommissural point of the third ventricle. Average responders' activation volume lay on the trigeminohypothalamic tract, connecting the trigeminal system and other brainstem nuclei associated with nociception and pain modulation with the hypothalamus, and the prefrontal and mesial temporal areas. CONCLUSIONS We identify the optimal stimulation site and structural connectivity of the deep brain stimulation target for cluster headache, explicating possible mechanisms of action and disease pathophysiology.

bearcat', welcome and, as we say, very sorry you have to be here. Can you tell us what you're currently doing for your CH, and what you've tried in the past? Be as specific as you can (for example, not just "tried verapamil and it didn't help," but how much verapamil, if you remember). The most useless information is "tried everything." Oxygen is your #1 priority, if you don't have it. Are you using the nonpharmaceutical things that can sometimes quickly abort an attack, or at least make it less bad? An energy shot (such as 5-Hour Energy) drunk down quickly at the first sign of an attack helps many/most. For many/most, it doesn't keep them awake if they take it during the night. Something cold to create "brain freeze" can help, too, such as drinking ice water through a straw aimed at the roof of your mouth on the CH side, or even holding a lump of frozen juice concentrate against the roof of your mouth with your tongue. Melatonin at night helps some/many. You could start at about 9 mg and work up to a satisfactory dose. Since many wind up in the 20-plus mg level, you could start higher than 9mg, but it's hard to know how groggy you might feel in the morning. Benadryl multiple times during the day is also suggested. You might be doing that as part of the D3 regimen -- I think Batch recommends something like 25mg three times a day and 50 mg at bedtime. Of course, don't take both Benadryl and melatonin at bedtime. If you're taking verapamil, be sure that you take that at least 8 hours apart from when you take the calcium part of the D3 regimen.

THANK YOU, Denny, for taking on that task. If I ever have free time again (maybe early next year), I'd be willing to work on updating the O2 doc and just tidying up the D3 post. As we always say, "If we can help just one person . . . " Maybe instead of a general start-here type post, it could just be "things you can do right now." This might actually have been the original idea Moxie was presenting.

I've given this a lot of thought, since I am going to have to be winding down the time I spend here. My first thought has been that there have been several "start here" documents in the past, but they don't get traction, for what I think have been three main reasons. The first was that they weren't posted prominently enough for people to actually know they were there, and reading them certainly wasn't required. The second (or maybe the first) reason was that they were not, in my view, very inviting. For example, although I'm a huge admirer of Bob, the "Big Pocket Guide" starts with many pages of stuff that is important but isn't why people came here (patient registry, clinical trials, devices ...), and it's just so darn big. The third (or maybe the first) reason is that I think people come here mostly with either a specific question in mind, or hoping for personalized advice about their situation. I don't think they're likely to look at a "start here" document and just feel satisfied. And there's so much specific advice that needs to be given that putting it into a "start here" wouldn't really help all that much. In my view, what would be most valuable would be to have a series of thorough, readable, and up-to-date documents on the major topics -- for example, O2, D3, busting, meds, and non-med abortive and preventive strategies -- maybe with some very brief overhead description. What's now in the CB files is pretty crappy. For one thing, the shift to the new system messed up the formatting of existing documents enough (at least on my computer) that they are now hard to read. For another, the information is old. I wrote the O2 document, and it needs a serious upgrade. Some of the busting advice is way out of date. I hate to even refer people to the D3 file because it's now so hard to follow. Then there are potentially very valuable files, such as Goadsby's article about pharma treatments for CH, that are tucked away in other corners of the board, at the home page. If I was going to have a "start here" related to meds, it would be just to point people to Goadsby's simple and clear discussion. A few months ago, there was a pretty big flow of new people to the board. Surprise, surprise, it was right around the autumnal equinox. Most of the time, except for what seem to be peak CH seasons, there aren't that many new people arriving. (At least, that's the way it seems to me.) To me, the big question is whether there are really enough committed people here to help with both the small flows and the big flows, and how long those people will be around. It's easy to name the handful of heroes, starting with spiny, who are here through thick and thin. And it's easy to name others who make very valuable contributions but more sporadically. It's even easier to name the scores of people who have been here, been helpful a few times or many times, and moved on. Maybe it's time for CB to think a little about why that is, and how this board will remain strong in the years to come.

Thank you for this.

Alank', there's the full vitamin d3 regimen, which you can read about here: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Incidentally, there was a fellow here who recommended a mix of baking soda, water, and lime juice as an abortive. Said he thinks it works for him. I don't know whether I'm right that water + baking soda = something fizzy (not necessarily carbonated). Your initial post just made me think of this.

Have you tried drinking ice water through a straw so it hits the roof of your mouth, with the goal of causing "brain freeze"? Some people hold juice concentrate against the roof of the mouth with the tongue with the same goal. Do energy shots, such as 5-Hour Energy, driunk down quickly at the first sign of an attack, help you? Have you tried standing in a bathtub with very hot water (and then maybe walking into a colder room)? These are all things that work for some people.

That's beautifully written and of course very tough to read. I'm sure everyone here can relate. You're not asking, but if I had to give you advice for what to do on a very limited budget I would suggest starting the vitamin D3 regimen right away. I suppose the initial cost might not be low, and the monthly cost might be close to that gym membership, but I'd expect you to get pretty good results from it, as most people with CH have (including people with chronic CH). I'll list the ingredients at the end. You can read more about it here: https://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 I'd also suggest considering busting with rivea corymbosa (RC) seeds. You can buy the supply you need for under $20. Read about busting in the numbered files in the ClusterBuster Files section. RC seeds are covered in the file on LSA. Supplements in the D3 regimen: > Vitamin D3 (Cholecalciferol) 10,000 IU/day (Adjust as needed to keep serum 25(OH)D near 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 > Magnesium 400 - 800 mg/day (magnesium chloride, glycinate or oxide) > 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 (Maximum Dose) > Vitamin B 50 ** 3 month course, after that, the 7 B vitamins in the Mature Multi will be sufficient > Zinc * 10 mg/day > Boron * 1 mg/day minimum, 3 mg/day optimum * Included in the Kirkland brand Mature Multi in sufficient quantity ** Vitamin B 50 is a single pill formulated with the seven B vitamins plus 400 mcg of folic acid. Dr. Stasha Gominak, MD, a neurologist at ETMC, Tyler, TX, suggests a 3-month course of vitamin B 50 to address any deficiencies among the seven B vitamins. The anti-inflammatory regimen can be used by itself or as an adjuvant therapy along with the Standards of Care recommended treatments for CH

Thank you for this, Cudahy'. Very very mixed reviews on this device. I did notice from the clinical trial reports that it was in fact useless or nearly useless for people with chronic CH, but more effective for episodics. Have you tried the vitamin D3 regimen, which has worked well prophylactically for a very large percentage of the many people who have tried it, including many with chronic CH? http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Are you able to have success with split sumatriptan injections? Most people seem to need only 2 or 3mg, not the full 6 in the standard autoinjector typically prescribed for CH. https://clusterbusters.org/forums/topic/2446-extending-imitrex/

Thank you, Janet! Looking forward to hearing how it goes; hoping it's great for you.

Batch's whole document is here: https://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708. At the bottom of page 2 is the table showing the ingredients, which I can't/don't know how to insert here, but is a lot easier to read. Of course, you should read the whole document. I'm going to quote some core things from pages 2, 5, and 6, but I'm not saying I'm not leaving out anything important! These quoted sections do not include the "loading" process to quickly ramp up D levels, which is described beginning at the bottom of page 7. Page 2: Anti-Inflammatory Regimen. The suggested nutrients and their doses used in the Anti-Inflammatory Regimen for adults are shown in Table 1 and Figure 2 below. Children with CH should receive a vitamin D3 dose of 50 IU per pound of body weight. The other nutrients and supplements should be taken at RDA for the appropriate age group. > Vitamin D3 (Cholecalciferol) 10,000 IU/day (Adjust as needed to keep serum 25(OH)D near 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 > Magnesium 400 - 800 mg/day (magnesium chloride, glycinate or oxide) > 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 (Maximum Dose) > Vitamin B 50 ** 3 month course, after that, the 7 B vitamins in the Mature Multi will be sufficient > Zinc * 10 mg/day > Boron * 1 mg/day minimum, 3 mg/day optimum * Included in the Kirkland brand Mature Multi in sufficient quantity ** Vitamin B 50 is a single pill formulated with the seven B vitamins plus 400 mcg of folic acid. Dr. Stasha Gominak, MD, a neurologist at ETMC, Tyler, TX, suggests a 3-month course of vitamin B 50 to address any deficiencies among the seven B vitamins. The anti-inflammatory regimen can be used by itself or as an adjuvant therapy along with the Standards of Care recommended treatments for CH Page 5. Order the following lab tests to establish a baseline before starting the anti-inflammatory regimen: o 25-Hydroxyvitamin D3 [25(OH)D3]. CPT Code 82306. Quest Diagnostics Test Name: 92888- QuestAssureD 25-OH Vitamin D (Total), LC/MS/MS. 95% of CHers with active bouts of cluster headache will have a 25(OH)D serum concentration ≤ 47 ng/mL, (117.2 nmol/L). Any 25(OH)D serum concentration < 50 ng/mL, (125 nmol/L) is grounds for starting this regimen. o Vitamin B12 (Cobalamin). CPT Code 82607 o Parathyroid Hormone (PTH) Intact and Total Calcium. CPT codes 83970, 82310. Establish baseline. o CBC (w/ Differential and Platelets). CPT Code 85025. (Abs) Eos >350 indicates possible allergy o Eosinophil Count, Nasal. CPT Code 89190 o Lab results for Erythrocyte Sedimentation Rate (ESR) CPT Code 85652, C-Reactive Protein (CRP) CPT Code 86140 and plasma viscosity may prove useful if inflammation is suspected Page 6. 50 mg/day (25 mg twice a day or 50 mg at bed time) Benadryl plus additional vitamin D3 up to 50,000 IU/day may be required to maintain a CH pain free response during periods of high pollen count resulting in an allergic reaction. Caution patient that Benadryl (Diphenhydramine hydrochloride) can and will cause drowsiness and not to drive when taking it if at all possible. Some CHers have reported that 12.5 mg Children’s Allergy Relief Liquid Benadryl taken twice a day is also very effective with less drowsiness.

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."