CHfather

It can be frustrating to try to get a CH diagnosis, as I've said. Most doctors just aren't familiar with CH. If your doctor insists on treating you for migraines, that isn't completely bad news. Two standard treatments for migraine are also treatments for CH. One is a preventive, verapamil. It probably won't help you much in the beginning, unfortunately, because it has to be started at low levels and monitored for its effects on your heart. But it might help. An abortive often prescribed for migraine is sumatriptan (Imitrex/Imigram). This also works to stop CH attacks. BUT the most helpful kind for CH is injectable sumatriptan. That's what you want. At the very least, you want the sumatriptan nasal spray, which helps most people with CH. Pills will probably not help you. I just don't know whether a steroid taper is a migraine prescription. With CH, people often go on a steroid taper of about ten days or two weeks at the beginning of their treatment, at the same time as they start verapamil. Usually the steroids eliminate or reduce the pain while they are being taken -- and that gives more time for the verapamil to take effect as a preventive. Your doctor might typically prescribe other things for migraine. If you can, you should try to get those migraine meds I just mentioned prescribed if your doctor insists on a migraine diagnosis. The bad thing about being treated for migraines instead of CH is that oxygen, which is a very effective abortive for CH attacks and has the added benefit of not having the side effects associated with the other medications I have mentioned, is not prescribed for migraine. You should come as close as you can to begging for an oxygen (O2) prescription because it's the thing you want most. Your doctor has probably never written a prescription for O2 for a "headache" condition. I can tell you that the prescription should read something like this: "Oxygen therapy for cluster headache. 12-15 lpm for 15 minutes. Non-rebreather mask." (A doctor might use abbreviations for some of things.)

As fella' said in his first post, there are some things you can try right now to stop an attack or at least make it so it's not so bad. Later (as soon as possible), a doctor can prescribe you some things that are will help more reliably, but for right now . . . 1. Drink down an energy shot such as 5-Hour Energy at the first sign of an attack. Don't wait -- just do it. Many people prefer them very cold. The ingredient in these that helps most is caffeine, but many people think the taurine and maybe the B vitamins also help. If you don't have an energy shot handy, try a very strong cup or more of coffee. (For a large proportion of people, taking this caffeine during the night doesn't keep them awake.) 2. Drink ice water through a straw aimed at the roof of your mouth. A lot of it. Your goal is to create "brain freeze." 3. Very hot water, however it helps you most. Some people find that standing in a tub with your feet in very hot water helps them. Some have said that alternating between the hot tub and some relatively cold room air helps. In addition . . . Some people find that it helps to deeply breathe cold air, from an air conditioner if you're inside or outside if the air is cold where you are. Some people find that vigorous exercise helps. Vigorous exercise outside in cold air can be beneficial for some. Melatonin taken at night can help. The body gets quite low in melatonin during cluster headache periods. Many start with about 9mg and some work up well into the 20-plus mg range. Some people find that their CH periods coincide with times of high pollen or other kinds of allergies. One expert recommends taking 25mg of Benadryl every 4 hours, and 50mg at night. If you do take this Benadryl dose at night, don't also take the melatonin. Two people here have said that they got benefit for stopping or reducing an attack from combining the juice of one or two limes with a teaspoon of baking powder in water, preferably bottled water. They both took this along with an energy shot. As fella' and Denny also said, the vitamin D3 regimen described in the ClusterBuster Files section of the board can help a lot, although it probably won't help immediately. See what you can do to get started with that. There are a lot of videos on youtube of people having CH attacks. Maybe your mom would be willing to watch some to see what this condition can do to people. All the things you are experiencing, from the willingness to harm yourself to make the pain go away, to the dread of when another attack will come, to the lack of understanding from people who should be more on your side, are things many people here have gone through. It's a terrible condition to have, but you can manage it so it doesn't wreck your life. You are at the worst of it now, but it will get much better. AND there are new medicines on the horizon with great promise. You have one very important thing going for you: You have what seems to be an accurate diagnosis. Most people go through years and years of misdiagnosis and mistreatment -- teeth pulled, sinus surgeries, medications that don't help, being told that there is something wrong with them mentally -- before they somehow get a correct CH diagnosis. You are on what seems like the right path to get needed treatments pretty quickly. Do read the numbered files in the ClusterBuster Files section to understand about another option, "busting," that has helped many.

Fabulous! Thanks for the update!

Nothing to add to fella's great post, except two questions: How long do your attacks last; and are you able to sit or lay still during them, or do you feel agitated and have to move around (or rock back and forth)? Mostly, I wanted you to know that there are many of us here ready to do our best to help you.

greg, if you put the word gamma into the search bar at the top right of any page and search "all content," you'll find quite a few remarks about the device. Some high praise, a lot of okay-but-nothing-special, and some downright negative. At least at the last time it was discussed, it was pretty darn expensive, hundreds of dollars a month if I'm recalling correctly. I recall from the clinical trials that it didn't do as well at aborts as a good oxygen system would be expected to do, and it is considerably less effective for people with chronic CH than those with episodic. There was some suggestion in the research reports, and some suggestion from some people commenting here, that it might have preventive effects. If it works, portability seems to me to be its major advantage, but the cost as it has been reported here would be a factor for most people.

Rod, do you find that this is effective for aborts, or for helping with O2 aborts? I think the basic "waterness" of it would be appealing to avoid the general crappy feeling from drinking a whole lot of energy shots, but it's a lot of liquid (16 ounces) to deliver that 180 mg of caffeine, and there's no taurine (which, as you know, some think is a valuable component for aborting/reducing an attack).

This is a small but important issue -- you want to take the calcium about 8 hours apart from when you take the verap.

Did you know that there was a time, not so very long ago, when "leonine features" were considered to be a characteristic of people with CH? A doctor suggested that in 1972, but it was still being discussed in the literature in the 1990s (https://www.ncbi.nlm.nih.gov/pubmed/1468913?dopt=Abstract), and still appears in some CH-related information today. It seems ridiculous now (to me at least), along with other once-accepted "truths" such as that women don't get CH (they're just overreacting to migraines); that people with hazel eyes are predisposed to CH; and that people with CH tend to be substance abusers. I think these things were probably all well-intentioned efforts to get a better handle on CH, but of course they all also led to harm in terms of getting an accurate diagnosis.

Well said. Best wishes to all.

Thank you for all this info. I'm not sure it's pertinent here, since your O2/rebound pattern is older than this and the D3 seems to have corrected any effects from lithium, but lithium is notorious for creating rebound attacks when its use is discontinued. Some medical literature suggests only prescribing it for chronic CH since the rebounds from getting off it are so bad (and the side effects in general are so typically noxious). I also had a hard time understanding Batch's hyperventilation instructions, but what I think is correct is that there are a series of very short, very deep inhale/exhale "cycles," each lasting just a few seconds, and that you do ten of those cycles with room air, in a total of about 30 seconds, before you start on the O2. I'm going to paste below what I think is his most recent writing about this. You might not have seen his "redneck reservoir bag" approach; these instructions are part of it (link to it is below). Yes, it could be that staying on the O2 longer after an abort will hold off some subsequent hits. I think "5-10 minutes" is the standard advice. This is the doggone thing that makes anecdotal evidence so challenging. My daughter (the person in my family with CH) never took any CH meds except, for a short while, gabapentin, for the first ten years she had CH. She didn't even have oxygen. But her cycles got longer and worse, pretty much year after year. Nice story about Ben Khan. I wonder how many people with CH are indebted to someone who reached out a hand to them. I know that as a family member, the kindness that Bob Wold extended to me about 8 years ago will never be forgotten (and still brings some tears of gratitude to my eyes). Somebody here might be in touch with Mr. Khan. Here's Batch on hyperventilating when using the "red neck" method. You can see the whole file, with details about using the redneck bag, here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ When you've hyperventilated for 30 seconds (ten complete cycles) per the procedures below... [These are the procedures] The exhale part of this procedure is important. Exhale rapidly until it feels like your lungs are empty... They're not. At this point you do the abdominal crunch and hold the chest squeeze until your exhaled breath makes a wheezing sound for a second then throw your shoulders back and inhale as deeply as possible then repeat the exhalation with a crunch in one fluid motion. Ten of these complete cycles in 30 seconds should start to push your body into respiratory alkalosis... (Remember the movie "The Andromeda Strain") On the tenth exhalation, hold the squeeze/crunch until your breath makes a wheezing sound for at least 3 seconds... or until you stop wheezing... This will squeeze out another half to full liter of exhaled breath that's highest in CO2. You'll know you're doing this procedure correctly when you feel a slight tingling or prickling on your face, lips, hands, lower legs and feet. This is called paresthesia.

I am guessing that Batch will show up soon to give the most reliable answer to your D3 question. If not, you can PM him (though I am curious to see his response, so I hope he replies here). Thank you very much for the lithium info. I will keep that in mind. Yesterday, on another thread, I suggested that rebound attacks after O2 aren't a real thing. Would you mind saying a little more about yours? In the most recent study of rebounds, the general conclusion was that at proper flow rates and with "better techniques in oxygen application," rebounds were pretty much a thing of the past (they were reported by Kudrow at the very beginning of O2 use, in 1981). But if you get them, you get them. Did you stop using O2, or have you just accepted the likelihood of rebounds? And did Ben Khan tell you about rebounds, or about O2? Thank you.

This is probably unhelpful. I'm just adding a little extra info that might help someone who knows what he's talking about -- which I don't, but Batch and Racer and perhaps others do -- to maybe figure this out. The eBay ad says "for use with pipeline systems or the new BOC CD cylinder." I don't know what a "pipeline system" is, but the "new BOC CD cylinder" mentioned in the ad might be what scramble has, and it does indeed have a Schrader valve, into which it appears that the end of the eBay product would fit. The BOC CD cylinder also has a built in regulator/"flow selector." BOC CD product info here: http://www.bochealthcare.co.uk/internet.lh.lh.gbr/en/images/504370-Healthcare Medical Oxygen Integral Valve Cylinders leaflet 06409_54069.pdf Beyond that -- and the observation that this eBay rig doesn't come with a mask or tube, which might be easy or hard to acquire; and the probably significant twist of this being an N2O/O2 system and not just O2 -- I got nothing.

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.