CHfather

I've got nothing on bee stings. But (1) Please do try the D3 regimen, following it to the letter (https://clusterbusters.org/forums/topic/1308-d3-regimen/); and (2) There are plenty of folks for whom 15 lpm oxygen didn't work but a higher flow, 25 lpm or more, does work, particularly when the good mask, the ClusterO2 Kit, is also used and effective breathing strategies are applied. I'm asking you to very seriously consider trying oxygen again with those improvements. If you need information about getting the equipment, let us know. I'm interested in know how you use busting to abort attacks. There was a time when that was understood to be an effective abortive, but most folks here now use it to stop their cycles or put them into remission if they're chronic. I wonder whether you have tried that, which I'm assuming might involve larger doses than used for aborting.

Hmm. Hope it's the mag plus whatever that's helping. Mag has been recommended as a CH treatment for some time. Very mixed results, as with almost everything that's not first-line. Some thanking the Lord for it and others saying it does nothing, or worse, for them. Some powerful effects on the bowels, I have read. DosePro is the same sumatriptan, just delivered differently. Expensive, but maybe your insurance covers that. Imitrex is now the generic (as I understand it) and DosePro, because of the new delivery technology, is non-generic. Maybe you can convince the doctor or the pharmacist to go back to 'Trex. I know a young woman ("young" to me, early middle-aged I guess to others) in DC whose life was changed by O2. She has become very reclusive in general, and even more so when she's in cycle as she is now, but maybe she'd agree to meet with him, if he wants. Unlike most people with CH, she has no interest in meeting others with the condition, so it's just be a favor if she's willing to do it.

I'm very glad this works for you. I have no idea whether it's safe. It's also interesting to me that it seems you can stop a cycle with shrooms even when you are using triptans, if I'm reading that correctly. You know you can split the injections? Still expensive, but 3-for-1, at least, and of course an extended supply. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ You're not using oxygen, I take it. That 15 minutes to abort with the snorting could well be considerably less time, and no side effects, with an optimized O2 system -- high flow, good mask, good breathing technique. Have you tried the D3 regimen? Very effective for most people who try it. https://clusterbusters.org/forums/topic/1308-d3-regimen/

Damn. Are you possibly in a period of high pollen there (which would throw more histamines into the mix)?

I wonder if you could get to see Dr. Brian McGeeney in Boston. He's a great, great friend to people with CH. I'll PM you a way to contact him (he posts here using a screen name, but I don't like to put people's real names with their screen names). At the very least, I'm sure he'll be at the conference. I think everyone here will agree that prednisone is meant for short-term relief to allow other meds to kick in, NOT for long-term treatment. It's not exactly clear to me how much you're taking, but in my opinion it sounds like much, much too much. Your dosage of verapamil was very low. If there wasn't a medical reason not to go higher, you should have been trying two, three, and even four times as much verap. Depending on how much Imitrex you're using, that can be causing rebound issues, too. I'm glad O2 is working for you! Are you splitting your injections? https://clusterbusters.org/forums/topic/2446-extending-imitrex/ It's pretty rare that the D3 doesn't help. I'd consider trying that again. You can be directly in touch the the originator of the D3 regimen, Batch, who will do his 100% best to make it work for you. Batch will be at the conference, too. Mushrooms won't help while you're taking pred or trex.

amon', do you have the ClusterO2 Kit or some other device that gives you the option of breathing through a tube? A lot of people prefer to do it that way. Here's an illustration (starting at about 5:30): ClusterO2 Kit: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

Since you say "I have tried all remedies," I'm only going to ask whether that includes the D3 regimen, following the whole regimen carefully (including adding Benadryl)? https://clusterbusters.org/forums/topic/1308-d3-regimen/ Wish I could say that there's something that eventually helps everyone -- and it seems to me there almost always is -- but of course you read about "intractable" cases for which some kinds of surgery are the next step. Regarding busting, I would say that many people find that they have to switch substances at some point, for example going to seeds if they have typically used shrooms, or vice versa. This often helps. Some, maybe even many, busters (including chronics) have found that the synthetic tryptamine 5-MeO-DALT helps them. Sometimes the results are pretty miraculous and sometimes they're disappointing. We have not really talked about DALT at this forum for quite a while, but if you are interested in that, I can get you some contacts. As I understand it, DALT is not explicitly illegal in most US states, so it can be purchased online (from foreign vendors), but you have to know who to go to. DALT is (or at least once was) discussed extensively at the Facebook group, "Cluster headaches." You have to request to become a member there. This link might take you there -- I'm not sure whether it will work: https://www.facebook.com/groups/17789934480/

pro2 -- Sorry you're still getting hit so bad; hoping you'll get the O2 soon and the other things (including D3, I hope) will kick in. Have you tried the feet in very hot water in the bathtub thing for quelling/aborting attacks? Some people swear by it.

more reason for me to be jealous.

I'm pretty darn envious that so many of the great ones -- you, Batch, Racer, Jeebs (I would imagine), Hipshot (I assume), and others I don't know about -- are going to be in Austin this year. Sounds like it's going to be one of the great gatherings.

Anita, I had asked Batch whether he had seen people having such problems as your husband has had with O2. I will say again that in my view he knows as much about O2 use as anyone. He's not really responding to what happened to your husband, when O2 seemed to make things worse or be ineffective, but just talking about frequency of attacks. I'm curious about whether any others might have noticed what he's describing. This information probably won't make your husband any more interested in trying to stick with the O2. Here's what he wrote to me: >>>There's an interesting phenomenon that occurs when CHers first start oxygen therapy. The frequency of their CH goes up for two to three weeks then starts dropping by the end of the first month and is less than the starting frequency at the start of oxygen therapy by the 7th week. Subsequent rounds of oxygen therapy for ECHers don't show this phenomenon during their next cycle. CCHers only go through this phenomenon once. I'll be explaining this phenomenon at the Conference in September.<<<

Well, if he does the D3 with commitment, it will help. In your initial message you said he has sumatriptan injections. I'm not going to read back through the whole thread, but he should be splitting those for many reasons, including the lessened effect on causing rebound headaches. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ A prednisone taper might at least give a break from the pain for a while. You said he's taking verapamil. Quite a few people find that it doesn't start helping them until they have reached pretty high doses: up to 960mg/day, and sometimes even higher. Lithium? gabapentin? Both of them help some people, though of course not without potentially tough side effects. 10 mg of melatonin at night (working up from there as needed)?

I suppose he might be frightened by his experience with the pure O2 from the cylinder the other night. An experience with anything that seems to bring on a bad attack can make a person with CH very hesitant about trying it again. Wishing you and him the best.

Just the open holes. If you tape both, which you can do, he'll need to task the mask off his face to exhale. If he does that, he'll have to be very careful not to take in any room air when he inhales. If he covers the open holes with his thumb instead of taping them, he can take his thumb off off to exhale -- but again, he has to be very careful to keep those holes covered when he inhales. I'm not even gonna ask why the concentrator. Because it doesn't make 100% O2, using the concentrator is kind of like leaving the holes open in the mask. Plus, usually -- maybe yours is different -- the flow rate on the concentrator doesn't go up very high.

J Headache Pain. 2016 Dec;17(1):69. doi: 10.1186/s10194-016-0660-7. Epub 2016 Jul 30. Release of PACAP-38 in episodic cluster headache patients - an exploratory study. Tuka B1,2, Szabó N1, Tóth E1, Kincses ZT1, Párdutz Ã1, Szok D1, Körtési T1, Bagoly T3, Helyes Z3,4,5, Edvinsson L6, Vécsei L1,2, Tajti J7. Author information Abstract BACKGROUND:Activation of the trigeminal-autonomic reflex, involving the trigeminal ganglion, the superior salivatory nucleus and the sphenopalatine ganglion (SPG) is crucial in the pathophysiology of cluster headache (CH). Since pituitary adenylate cyclase-activating polypeptide-38 (PACAP-38) is present both in the SPG and the trigeminal ganglion (TG) and its role in migraine has been described, our aim was to determine the plasma PACAP-38 levels in different phases of episodic CH (ECH). Peripheral cubital fossa blood samples were taken during the ictal and inter-bout periods of male ECH patients and from age-matched healthy controls (n = 9). Plasma PACAP-38-like immunoreactivity (LI) was measured with specific and sensitive radioimmunoassay. FINDINGS:Significantly lower plasma PACAP-38-LI was detected in the inter-bout period of ECH patients than in healthy controls. However, PACAP-38 was significantly elevated in the plasma during CH attacks as compared to the inter-bout phase in the same subjects (n = 5). CONCLUSIONS:This exploratory study suggests that PACAP-38 may be released during the attacks of ECH. Further patients and long-term follow-up are necessary to reveal its function.

Two related studies Cluster headache attack remission with sphenopalatine ganglion stimulation: experiences in chronic cluster headache patients through 24 months; Barloese M, Jürgens T, May A, Lainez J, Schoenen J, Gaul C, Goodman A, Caparso A, Jensen R; The Journal of Headache and Pain 17 (1), 67 (Dec 2016) Tags:Pain Management Read/Add Comments | Email This | Print This | PubMed | Get Full Text BACKGROUND Cluster headache (CH) is a debilitating headache disorder with severe consequences for patient quality of life. On-demand neuromodulation targeting the sphenopalatine ganglion (SPG) is effective in treating the acute pain and a subgroup of patients experience a decreased frequency of CH attacks. METHODS We monitored self-reported attack frequency, headache disability, and medication intake in 33 patients with medically refractory, chronic CH (CCH) in an open label follow-up study of the original Pathway CH-1 study. Patients were followed for at least 24 months (average 750 ± 34 days, range 699-847) after insertion of an SPG microstimulator. Remission periods (attack-free periods exceeding one month, per the ICHD 3 (beta) definition) occurring during the 24-month study period were characterized. Attack frequency, acute effectiveness, medication usage, and questionnaire data were collected at regular clinic visits. The time point'after remission'was defined as the first visit after the end of the remission period. RESULTS Thirty percent (10/33) of enrolled patients experienced at least one period of complete attack remission. All remission periods followed the start of SPG stimulation, with the first period beginning 134 ± 86 (range 21-272) days after initiation of stimulation. On average, each patient's longest remission period lasted 149 ± 97 (range 62-322) days. The ability to treat acute attacks before and after remission was similar (37 % ± 25 % before, 49 % ± 32 % after; p = 0.2188). Post-remission headache disability (HIT-6) was significantly improved versus baseline (67.7 ± 6.0 before, 55.2 ± 11.4 after; p = 0.0118). Six of the 10 remission patients experienced clinical improvements in their preventive medication use. At 24 months post insertion headache disability improvements remained and patient satisfaction measures were positive in 100 % (10/10). CONCLUSIONS In this population of 33 refractory CCH patients, in addition to providing the ability to treat acute attacks, neuromodulation of the SPG induced periods of remission from cluster attacks in a subset of these. Some patients experiencing remission were also able to reduce or stop their preventive medication and remissions were accompanied by an improvement in headache disability. Source: DGNews | Posted 11 weeks ago Sphenopalatine Ganglion Microstimulator System Safe, Effective for Chronic Cluster Headache: Presented at EAN Tags: Read/Add Comments | Email This | Print This By Chris Berrie COPENHAGEN, Denmark -- June 2, 2016 -- A sphenopalatine ganglion (SPG) microstimulator system (Pulsante) is safe and effective in the treatment of medically refractory patients with chronic cluster headache (CCH), according to 24-month efficacy data presented here at the 2nd International Congress of the European Academy of Neurology (EAN). According to Rigmor Højland Jensen, MD, Danish Headache Centre, Rigshospitalet-Glostrup, Glostrup, Denmark, patients with CCH are “underdiagnosed and undertreated, and they have a high number of consultations and inappropriate interventions.†The Pulsante system is a minimally-invasive, rechargeable, multi-channel, peripheral nerve stimulation system. The system includes an insert (the microstimulator) that is smaller than an almond with an integral lead designed to fit ranging facial anatomy; and a remote with simple controls that provides on-demand patient-controlled SPG therapy. Therapy settings are individualised and can be adjusted quickly by physicians using a programmer laptop. A total of 43 patients with CCH were enrolled in the Pathway CH-1 study. Of the patients, 33 continued into a long-term follow-up study and completed at least 24 months of follow-up. All patients were refractory or intolerant to medical treatment, with a mean attack frequency of 16.8 headaches per week, and HIT-6 headache disability of 66.7. Each treated attack was evaluated for effective therapy (pain relief from moderate or greater pain, or pain freedom from mild pain). Acute responders achieved effective therapy in ≥50% of evaluable treatments. Frequency responders experienced a ≥50% reduction in attack frequency compared with baseline. A total 5,956 attacks were treated among all 33 patients (19% mild initial pain, 45% moderate, 23% severe, 13% very severe). Of these attacks, 65% achieved effective therapy (64% of mild attacks, 78% of moderate, 62% of severe, 23% of very severe). Of the 33 patients, 61% experienced clinically significant improvements, with 5 patients classified as both acute and frequency responders, 10 classified as acute, and 5 classified as frequency responders. Acute responders successfully treated, on average, 75% of their cluster attacks. Frequency responders experienced, on average, an 82% reduction in attack frequency. Further benefits were seen in the proportions of patients showing clinical improvements in preventive medicine use (64%), improved headache disability (HIT-6, at least 2-3-point decrease; 55%), and improved quality of life (73%). The most common surgical side effects were sensory disturbance (67%) and pain and/or swelling (35%), with 70% of these resolved within 90 days. “We didn’t see any additional adverse side effects over this time,†said Dr. Jensen. Funding for this study was provided by Autonomic Technologies, Inc.

Anita, I accept your thanks for the D3 info on behalf of Batch, who as always was right there when help was needed. And Bill is also a great and generous O2 expert (he gives very valuable talks about O2 at ClusterBuster conferences, among other things), and I'm glad he's on the case, too. (If there's a chance that hubby or you and hubby could make it to the CB conference in Austin this fall, he/you should definitely do it. I think it could be life-changing for him, as it has been for so many.) The bag should fill when he's not breathing in, but empty when he does inhale (that's where the pure O2 is that he's inhaling is coming from) and then refill. If the bag actually remained full the entire time, something's wrong. When Bill talks about outrunning 15 lpm, he means that the bag doesn't fill fast enough at that flow rate and so your husband has to wait before his next inhale, or inhale less than a full amount. You don't want that. Probably the holes on one side of the mask have a gasket behind them (usually a white circular thing), and probably the other holes have nothing behind them. The gasket, if it's working, should let air out as he exhales but not let any room air in as he inhales. You should cover any open holes (with tape or with his thumb), because as he's breathing in they're letting room air mix with the pure O2 from the bag. He should, as Bill also suggests, press the mask firmly to his face for a good seal, and not use the strap to hold it, ever. You can cut the strap off. This video might not help you much (though I confess that I needed it just to figure out how to assemble the ClusterO2 Kit (which used to be called the O2ptimask)), but toward the end the guy does talk about breathing strategy, and I just like his enthusiasm. https://www.youtube.com/watch?v=eX76JrEvNxE. He uses the tube and not the full mask, but the principles are basically the same. I know Bill and Denny are correct that there are times when O2 doesn't work. But because it's such a valuable resource, which usually does work, it's important to keep trying, as they both say.

We've agreed to mention N2O as a possible trigger. No problem with that. Prilocaine appears to be what one wants to ask the dentist for. I was remembering this thread featuring Ricardo in which nitrous at the dentist's office saves him twice. Starting at post #13: https://clusterbusters.org/forums/topic/1281-nmda-receptor-antagonists/ And I had a vague recollection of this study in which nitrous was effective in treating migraines: http://www.ncbi.nlm.nih.gov/pubmed/10337883 A quick note about nitric oxide (NO). There was a time when it was thought to be a central feature in all primary headaches. I don't know the status of that thinking today. It was used to induce headaches in this study: http://brain.oxfordjournals.org/content/123/9/1830 and discussed here: http://www.sciencedirect.com/science/article/pii/S0163725808001411

One of the two oxygen experts I wrote to has responded. The following is from Batch, who in addition to being an oxygen expert and all-around great guy is also the creater and popularizer of the D3 regimen. You'll see why I mention that when you read his reply. I have shortened it a little bit because there are some details about a new approach to using O2 that Batch has developed, which your husband doesn't currently have the equipment for. I know that everyone who has been following this thread or participating in it is deeply disappointed along with you. >>>>I read through all the posts in this thread and have some suggestions. 1. Try to get the gent in to see his PCP for the 25(OH)D and vitamin B12 lab tests. It is almost axiomatic he's deficient in both. If the lab tests are going to take more than a couple days, have him start the anti-inflammatory regimen with 10,000 IU/day vitamin D3 on the first day. Then, if there are no reactions to any of the supplements, start the 2-Week loading schedule. When complete, drop back to a vitamin D3 maintenance dose of 10,000 IU/day plus all the other cofactors for at least two weeks then go in for lab tests of serum 25(OH)D, total calcium and PTH. Even if there isn't a complete favorable response to the anti-inflammatory regimen in the first week, this regimen should result in more effective aborts with oxygen therapy with shorter abort times. 2. If there's no response to the anti-inflammatory regimen after a week to 10 days, start a 7 to 10 day course of Benadryl (Diphenhydramine HCL). 25 mg in the morning and 25 mg before bed is a very safe dose. Just tell the gent not to drive when taking Benadryl (Dipenhydramine HCL) as it will make him drowsy. If he needs to drive, have him take 50 mg when home for the day and done driving. It will be just as effective. Diphenhydramine is a first-generation antihistamine that crosses the blood brain barrier to block H1 histamine receptors on neurons throughout the brain including the hypothalamus and in particular, the trigeminal ganglia where calcitionin gene-related peptide (CGRP) is produced. The rational for Benadryl (Diphenhydramine HCL) is he may be experiencing an allergic reaction. Allergic reactions create a flood of histamine that hits the trigeminal ganglia and results in the release of CGRP. CGRP results in neurovascular inflammation and the pain associated with CH. CGRP has been found in several studies to be elevated during the pain phase of migraine and cluster headache... It gets worse... CGRP in turn triggers the release of more histamine so you end up in a circular self-sustaining perfect storm cluster headache that continues until the chemical reactants are consumed which ends the CH attack... for now... I am convinced a histamine reaction results in the CHer being refractory to just about all methods of CH intervention including oxygen therapy and vitamin D3. 3. Oxygen therapy works most effectively if used with hyperventilation. We proved that with the oxygen demand valve study where 7 CHers from CH.com used flow rates that support hyperventilation either with an oxygen demand valve or with a 0 to 60 liter/minute regulator and Cluster O2 kit at flow rates around 40 liters/minute.

Wow, what a terrible thing. I can't imagine what could have gone wrong. When you say "it kept getting worse" and you're now at the hospital, do you mean it got worse faster or more strongly than his typical attacks? That's something I've never heard of; in fact, I've never heard of properly used oxygen not having some effect on a CH, even if it didn't abort the attack. The reservoir bag on the mask was emptying as he inhaled and filling properly after he had inhaled? The link you put in doesn't work, but I imagine you're talking about a hyperventilation-type approach? Did he do some kind of caffeine/energy drink just before? Did he get on it as soon as he felt the attack coming on? (I'm just trying to be sure we know all the variables.) I'm going to PM this to a couple of experts to see what they might have to say. So sorry!!!!!!!!!!!!!

You can buy a regulator at a welding O2 store, but there are two issues. One is that they generally very expensive to buy at those stores, and the other is that those regulators usually don't have the barbed connector that you attach your mask tubing to. You can buy an adapter with a barbed end at a hardware store, or you can fuss with the tubing and kind of jam it on, but you're better off getting a regulator that already has an adapter and that will cost considerably less. Here are two: https://www.amazon.com/IMAGE%C2%AE-Welding-Welder-Regulator-Cutting/dp/B00JP9WIF2/ref=sr_1_1?s=industrial&ie=UTF8&qid=1471881287&sr=1-1&keywords=welding+oxygen+regulator This is the one most people buy. There might even be a Harbor Freight store near you. http://www.harborfreight.com/catalogsearch/result?q=oxygen+regulator This is the best mask: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit You can get a standard non-rebreather mask at amazon or other places for just a few bucks. Be sure it comes with the tubing. I don't know what a tank might cost in Canada. The standard advice in the US seems to be that a full setup with a big tank, a good mask, and a regulator might cost $250-$300. You pay something to have the tank refilled. Depends, of course, on the size of the tank. Because you have to bring it in to have it refilled, many people prefer to get two somewhat-portable size ones that still have a good supply of oxygen, say 80 cubic feet of O2. (An 80 cu ft tank is still pretty heavy.) You might also want a smaller one, maybe 40 cu ft, to keep in your car. Have much you get from the tank is also going to depend on the size of the tanks, as well as the flow rate and the time it takes you to abort. An 80 cu ft tank has roughly 2.5 hours of oxygen in it at 15 lpm.

It is so gratifying when people here really do their homework and take responsibility! THANK YOU. Yes, concentrators are generally less effective, and that machine is bulky (and often quite noisy). Depending maybe on how much it will cost you to keep it around, you might put it in a closet in case he runs out of O2 and you don't get resupplied on time (which is a possibility with two small tanks, which -- depending on how small they are and how quickly he can abort -- might only have enough O2 for maybe three aborts each). Ultimately, he'll probably want to have this mask: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit You probably already know this, but the issue with flow rate is to have a flow that allows him to breathe steadily and effectively without having to wait for the bag on his mask to fill up for the next breath. The reason that many people have better results from the 25 lpm flow is that it allows them to breathe fully, deeply and forcefully. In the beginning, 15 might be enough for him. Remember that if he quickly chugs some caffeine just before getting on the O2, it will probably speed up the abort time. Most often, people choose an energy shot or energy drink as the source of that caffeine. Even though a Red Bull has about the same amount of caffeine as a cup of coffee, it is believed that other ingredients in the energy drinks/shots are somehow also helpful. An energy shot, such as 5-Hour Energy, actually has considerably more caffeine in an easily-drinkable form.

You make very good points, Jon -- I figured I'd start putting a draft together later this week and have you all look at it. One important point you raise is that most popular brands of flavored tortilla chips contain MSG. But if we just put MSG on the list, how many people are going to think, "Oh, I had chips and guacamole at that party yesterday; I should check to see if they had MSG in them." I mean, once you're sensitized to MSG, you know to check for it everywhere, but until then . . . I think we might want to at least include a list of some places where it's typically found. Actually, "laughing gas" is nitrous oxide (N2O), not nitric oxide (NO). I can only say that several people here have asked for laughing gas from their dentists and have no had adverse effects. In fact, there was a discussion a few years ago about whether one could get nitrous oxide for home use, since for one person it made aborting an attack much more fun. I did see the note at the list (not going to look back at it right now) from someone who said that a dentist once told him that laughing gas produces attacks, and so I think it has to be noted on the list -- but so far, I have seen only the other side of that.

Thanks, lp. I just wanted to mention about that dentist thing that the anesthetic that dentists typically use, epinephrine, is typically a trigger for most people. There are other anesthetics, including "laughing gas," that are not triggers.

We've had threads on this topic over the years, as you might imagine. Some people have received disability for CH, but it's generally not an easy road. I'm not going to completely disagree with Denny. It's a challenge because, as that letter states, "headaches" are generally not eligible for disability. But I think the letter is saying that CH and migraine can qualify for disability under the "most analogous heading," which is (or was, since that letter is a couple of years old), "non-convulsive epilepsy." A skilled disability lawyer could tell you whether that means that you apply on the basis of your CH and the judge will consider it under the general category of non-convulsive epilepsy, or whether you somehow have to claim that you have non-convulsive epilepsy in order to get a hearing. I think it's the former -- you apply on the basis of your CH. I think that's why the letter says that the "adjudicators have received special training and policy guidance on how to evaluate migraine and cluster headaches." A lawyer, as you may know, is "free" in these cases, in that the lawyer doesn't get paid, except for direct expenses such as photocopying and mailing, unless you win. A lot of people who have won favorable rulings have done it themselves, and several have said that if you win, the lawyer takes too much for having done too little. Some have felt that even the direct expenses were more than they wanted to pay (a few hundred dollars in some cases, as I'm remembering, in part because many people with CH have pretty big medical files to copy). Frankly, I was surprised that the most common opinion seemed to be that you should handle the case yourself, since you know your history better than anyone. Another long-term contributor to this board said that he finally had success when he hired a local attorney specializing in SSDI, rather than going to one of the big national law firms that handles SSDI. In most of the cases that I know of, people were denied the first time they applied and won on a later appeal, sometimes, as I understand it, a second or even third appeal. But not always -- sometimes there was victory on the first try. The people that I know of had very long histories of chronic CH and big piles of reports showing how many things they had tried for treating their CH. Heck, I should really just dig up a few links to those threads and let you read them yourself, instead of my poor attempts at a summary. Hold on a minute (:-)). Here's one: https://clusterbusters.org/forums/topic/3820-ssdi-assistance-request/?hl=disability Another: https://clusterbusters.org/forums/topic/1514-social-security/?hl=disability #3: https://clusterbusters.org/forums/topic/582-finally-got-social-security-disability/?hl=disability