CHfather

Thanks again. Two very small things: (1) I notice that I made a typo in a quote that's repeated twice, once in the quotes at the top and once under "Sleep, Rest, and Relaxation." The quote is “For years I couldn’t understand why I got a headache 30 minutes after I left work regardless of what time I left, I was blaming the dusty atmosphere until I read that relaxation was a trigger. It was an epiphany!†Should be a period, not a comma, after the word left. (2) I wonder if it would read better if the headings were at the left?

Thanks, J!!! There are a couple of headings that you might have missed (or you might have decided that they fit under the other heading). So, I had a separate heading for Sleep, Rest, and Relaxation (coming after Personal Habits and Activities); and I had a separate heading for Medications and Supplements (coming after Medical Conditions). The headings are still there, they're just not formatted like the other headings. At the beginning, the last quote (about MSG) should be aligned with the quotes before it. Thanks again! I'll look forward to comments about this so we can finalize it.

Okay, I have completed a Word document with the latest draft of the triggers list. However . . .When I try to post it here, the formatting gets all screwy. It would take me an hour to try to fix it, which I don't have right now. As far as I can tell, we can't use attachments. So I'm kind of stuck until I have enough time to deal with this. Soon, I hope.

Best wishes, Erika'! Keep us informed if you can.

:-) and fingers crossed for you

CH is often misdiagnosed as sinus headache. More than a few people with CH have had sinus surgery because that was thought to be their problem when it wasn't. Evidence is growing that pollen/allergies have an effect on CH, and I would imagine also on sinus headaches, so there could be a false correlation there. Do not fully rely on what an ENT says -- they can see things that aren't there. I'm not saying you don't have sinus headaches or some other kind of headache or CH -- only to be careful about that diagnosis. Try to get to a headache center if you can (most neurologists are pretty useless). Your symptoms are not all classic CH symptoms -- your attacks are a little or a lot too long to fit the "standard" definition, though some people do get long attacks; it's rare for a sequence of attacks to go on for only a few days; people do vomit from the pain but it's not common. The pain around your eye is classic CH. I don't think the numbness is a typical CH symptom, either, and I just don't know bout the popping. Others might have something to say about that. Needless to say, these are some serious effects (including that heart rate drop), and I'm sure you'll look into them vigorously. Did you get anything at the ER that seemed to help?

The lidocaine was probably an SPG nerve block, I would think (could be wrong). That, of course, could be why he's been feeling better (as opposed to the magnesium and . Or vice versa. Here's some info about SPG nerve blocks. https://americanmigrainefoundation.org/find-a-doctortreatment/treatment/sphenopalatine-ganglion-blocks-in-headache-disorders/ Also a treatment with very mixed results.

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