CHfather

My daughter's initial diagnosis was TN, also. The "good" thing about that diagnosis was that one could imagine that the microvascular decompression surgery might be a big help. But in my view it's a very mediocre doctor who confuses TN with CH. Oxygen, oxygen, oxygen. (And D3 and maybe some other things.)

You probably were given gabapentin or something like it when your diagnosis was TN?? Maybe that helped some, and that's why your doctor is prescribing another anti-convulsant?? In any event, carbamazepine is way down the list of recommended treatments. You should read the Goadsby article here for a a sense of pharmaceutical treatment options: https://clusterbusters.org/medical-research-reports-studies-case-reports-links/ Standard medical CH prescription would be a preventive such as verapamil, and OXYGEN as an abortive, with perhaps a triptan, such as injectable or nasal-spray sumatriptan, for breakout attacks. Most folks here will tell you that oxygen -- no side effects, highly effective at stopping attacks -- is the most important thing to have. Way too many doctors fail to prescribe it, for God-knows-what reasons. You need to either get that oxygen prescription by whatever means you can, as soon as you can, or seriously consider setting up your own system using welding oxygen, as many do. Strongly recommend that you start the D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ An energy shot such as 5-Hour Energy, drunk down quickly at the first sign of an attack, can abort an attack or at least reduce its severity. Others will probably suggest other things. Consider busting, which you can read about in the numbered files in the "ClusterBuster Files" section of this forum.

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If you're having your regular attacks and there isn't anything unexpected about them, you might not be having any external triggers, beyond whatever in it is internally, in the brain, that triggers CH attacks. If things shift significantly, triggers are one possible source. (I had a serious condition once, not CH but pancreatitis, that was triggered by MSG. It was actually caused by MSG, as opposed to being something I had normally that was sometimes brought on by MSG. The attacks came several hours after I had eaten something with MSG in it. Doctors had no idea that MSG could cause pancreatitis, so it took me a good (or bad) five years of occasional very painful attacks to figure out the MSG connection on my own. That's why I'm a fan of knowing what possible triggers for CH might be. As a side note, I'll mention that after my first attack, which was quite terrible, the ER doctor told me to only eat/drink clear liquids for a few days until it cleared up. So of course I ate chicken soup. Every time I ate it, I got a new attack, so I wound up living on Saltines and ginger ale for about five weeks, afraid to eat anything more substantial than that. It wasn't until I discovered the MSG connection many years later that I realized why the chicken broth made things worse -- it was loaded with MSG.)

Great to hear that the D3 is helping you so much, CBWMHH. I don't recall what else you are using for your CH, but let's make sure that you have the full arsenal -- oxygen, first and foremost, if you don't have it now -- before your next cycle. spiny's responses are, as usual, great. Did you know that there's a list of possible triggers over at the ClusterBuster Files board, plus quite a few posts adding to the list? https://clusterbusters.org/forums/topic/4568-triggers/ The idea of "triggers" is broader there than it is sometimes used. Sometimes a trigger is considered to be something that immediately brings on an attack. Alcohol is almost always like that. The list I linked to also includes things that seem to be associated with attacks that might come on later, but not immediately, or that might result in more attacks or worse attacks. Regrading one of the things you listed -- some people seem to find that reducing gluten helps, but I wouldn't say it's a commonly recognized trigger, or a trigger that is common to a large proportion of people with CH. I could be wrong about that.

TMS is an amazing technology. I feel good about its promise. http://www.neurologyadvisor.com/ahs-2017/eneura-transcranial-stimulation-device-effective-for-migraine-prevention/article/667476/ BOSTON – Single-pulse transcranial magnetic stimulation (sTMS) may represent an effective prophylactic treatment for migraine, according to results from a multicenter observational study presented at the 59th annual scientific meeting of the American Headache Society.1 Although the use of sTMS for the treatment of acute migraine with aura was approved by the US Food and Drug Administration, its effectiveness as a preventive treatment has not been assessed. For the eNeura SpringTMS Post-Market Observational US Study of Migraine (ESPOUSE study; ClinicalTrials.gov Identifier: NCT02357381), a prospective, open-label, observational study, 263 patients with migraine (mean age, 42.8 years; 80.3% women; 85.6% white) were recruited between December 2014 and March 2016, 132 of which were eligible. The participants completed baseline assessment, met the inclusion criteria (ie, 5 to 25 headache days per month; headache day: ≥4 hours of moderate to severe headache-related pain), and used the sTMS device at least once during the 3-month study period. Patients enrolled in the study initially had to monitor their headaches over a 1-month period, using diaries. They were then asked to use the stimulation device either preventively (4 pulses twice a day) or as an acute treatment (3 pulses every 15 minutes, up to 3 times). The primary end point effectiveness (ie, mean reduction of headache days compared with baseline period) showed significance with a mean reduction of -2.8 ± 0.4 headache days from baseline levels (9.1 days), which was superior to the set performance goal, “a statistically-derived, estimated placebo effect size, based on historical controls of -0.6 day reduction of headache days from baseline" (P <.0001). Adverse events (none serious; eg, lightheadedness, tingling) were reported by 19.4% of study participants and were estimated to be related to device use with varying degrees of certainty. The researchers conclude that “This open label study suggests that sTMS may be an effective, well-tolerated treatment option for migraine prevention.”

A college classmate of mine has been studying the mental health effects of supplements for a very long time (we just had our 50th college reunion, so even part of that is a long time!). He believes that SAM-e is as effective a treatment for depression as prescription antidepressants, and that it is also an effective "neuroprotectant" for long-term cognitive health. None of that has anything directly to do with CH attacks -- at least that we know of -- but hey, who knows? According to him, it has no known interactions with other medications and the only likely side effect is mild nausea that can be prevented by taking it with food.

I'm pretty sure that there has been at least one person here who experienced temporary aphasia (loss of ability to understand or express speech) in relation to CH attacks. http://www.docguide.com/reappearance-hemiplegic-cluster-headaches-case-report-and-review-literature?tsid=5 Cluster headache (CH) is a rare and severe syndrome characterized by the recurrence of unilateral pain attacks, of short duration (15-180min), and associated with ipsilateral cranial autonomic symptoms. Although, not formally included in the International Classification of Headache Disorders, hemiplegic cluster headache (HCH) is an even more rare subtype of CH in which typical attacks can be accompanied by visual, sensory, and/or aphasic migrainous auras that have a variable propensity to evolve in reversible hemi-motor symptoms. After its first description in 2002, only few cases of HCH have been reported and many open questions about its prevalence and pathophysiology still need to be addressed. We describe a case of a 41-year old male that fulfilled the ICHD criteria for episodic CH who experienced atypical attacks characterized by concomitant acute onset of sensory aura, aphasia and hemi-motor symptoms. We also provide a concise review of the available literature and discuss the prevalence and the possible pathogenesis of CH with hemiplegic features.

http://www.docguide.com/ketamine-infusion-combined-magnesium-therapy-intractable-chronic-cluster-headache-report-two-cases?tsid=5 BACKGROUND Chronic cluster headache (CH) is a rare, highly disabling primary headache condition. As NMDA receptors are possibly overactive in CH, NMDA receptor antagonists, such as ketamine, could be of interest in patients with intractable CH. CASE REPORTS Two Caucasian males, 28 and 45 years-old, with chronic intractable CH, received a single ketamine infusion (0.5 mg/kg over 2 h) combined with magnesium sulfate (3000 mg over 30 min) in an outpatient setting. This treatment led to a complete relief from symptoms (attack frequency and pain intensity) for one patient and partial relief (50%) for the other patient, for 6 weeks in both cases. CONCLUSION The NMDA receptor is a potential target for the treatment of chronic CH. Randomized, placebo-controlled studies are warranted to establish both safety and efficacy of such treatment.

First of all, you don't seem to have oxygen. A proper oxygen setup will reduce your abort time very substantially, without medical side effects. Knowing you can abort most attacks within 10-15 minutes might help with the anxiety, too. Any neurologist who doesn't prescribe oxygen is not an expert. The idea that if you don't treat your episodic CH properly it will become chronic is, I believe, completely ridiculous. Talk about making you anxious! That just seems like a very uninformed thing for the doctor to have said. Lithium is recommended to be prescribed only for chronic cluster headache, because of the side effects and because it has been shown to cause significant rebound attacks when you stop taking it. The article, "Treatment of Cluster Headache," on this page would be worth reading for you, I think: https://clusterbusters.org/medical-research-reports-studies-case-reports-links/ I know of a person who had CH and also anxiety and was prescribed lithium. I don't remember the dosage. While I'm sure that lithium helps many people with psychological conditions, for this person it seemed to have no effect on the CH and it seemed to make her more anxious just to know that she was taking lithium, if that makes sense. Triptan pills are usually not effective for CH, because they take too long to work. Maybe your attacks would end in 30-45 minutes without it. A sensible doctor would prescribe at least the oral spray, and probably the injections. Not everyone thinks that triptans are a good idea, but if you have oxygen you could use the triptan for breakout attacks that aren't helped by the O2. The only way the pills seem to help people, as I underswtand it, is if they know what time their attacks usually come and take the pill an hour or so before that. That's what I am remembering. Many people find that taking melatonin at night helps with attacks. Since as I understand it melatonin is a prescription drug in some countries, you might not be able to get it. If you can -- start at 9mg/night and work up from there. Please consider the D3 regimen described here. It might be kind of daunting to read the information even though your English is excellent, but the basic ingredients are listed in a table and that's most of what you need to know. Because it is so effective at preventing cycles or at least reducing how bad things are during a cycle, I think it has reduced many people's anxiety about their cycles. https://clusterbusters.org/forums/topic/1308-d3-regimen/ With all of that said (suggesting that treating your CH more effectively is likely to reduce your anxiety), anxiety and fear are things that many people with CH experience. And, yes, also depression. It has effects that are very understandably like what we call here PTSD -- post-traumatic stress disorder. Others might talk about how they cope, but I will say again that there are basic things you can do to make the experience less terrible. Some people find that psilocybin ("magic mushrooms") has had a very positive effect related to their emotional symptoms (and it also actually treats CH). You would have to decide whether you want to go that way. I'm not recommending it for you; just passing along the information.

Do you mean qty 200? (I assume qty means "quantity.") 20 RC seeds wouldn't be nearly enough; starting dose these days is 50 or more, and I'd say most folks get up to 80 or more pretty quickly after realizing that they get no psychedelic effects from 50. Psychedelic effects aren't necessary for the seeds to be therapeutic, but they are a reason why some people like to start lower and see what happens. Some people even recommend a starting dose of 100 (though I'm not one of them).

Thanks. 6 is considered a lot of HBWR. The hard/solid part is the outer shell (the hull); the actual seeds are inside that. I'm not sure what you got from this dose. I've encountered HBWR that were solid (not as solid as the shell, but solid) inside, and completely dead. There should have been loose fibers and small particles (the seeds) when you crushed them. A lot of work with mortar and pestle! Since you seem to have received some benefit and experienced some effects, something must have been going on. A lot of people find rivea corymbosa seeds considerably easier to work with (and, at least as I understand it, it's the same LSA).

Nice, nice, nice news! I'm always interested in seeds . . . How many HBWR did you use? Did you just grind it up in some kind of coffee grinder/blender? Would you mind just briefly describing the side effects?

e'head, I hope your oxygen works well for you. If it doesn't, please check back with us for some possible tips. It's not clear to me what you mean when you say you just ordered oxygen. If you're looking for a great treatment with no side effects, oxygen is it, but of course it only aborts attacks, it doesn't prevent them from happening. Like I say, please keep us informed about your O2. When you have it working properly, it will very significantly reduce your need to also use a triptan. The vitamin D3 regimen (lots of pills, but nothing pharmaceutical) is also a good option, which might actually be good for you: https://clusterbusters.org/forums/topic/1308-d3-regimen/ You should probably check to be sure you're not unnecessarily triggering any attacks. A lot of foods typically consumed by young folks tend to have MSG in them, for example. https://clusterbusters.org/forums/topic/4568-triggers/ A 5-Hour Energy drunk down at the first sign of an attack can often reduce the severity of the attack or even abort it. The stuff in there might not be particularly good for you, either, but you have to make the tradeoff between screaming and squirming around on the floor wishing you were dead and addressing the frequency and severity of your attacks. There's no question that some meds are, as you say, "detrimental," but they probably have relative degrees of detrimentalness. I'm not sure what urs means by "slapbacks" from nasal triptans or injected ones. There is some evidence that they might have detrimental effects, such as causing subsequent attacks, making attacks worse, or lengthening cycles. There are also people who never used triptans who experienced all those things. There are people here who would tell you never to use a triptan, and there are others who will tell you that the tradeoff between having a multi-hour attack and aborting it with a triptan is easy for them to make. Some people find that putting their feet in a bathtub of very hot water helps calm an attack. You might find some interesting other ideas in the ClusterBuster Files section.

Since you say you don't want to use triptans, this might not be very helpful, but as spiny says, with most autoinjectors you can break them open and get three, or at least two, effective shots from each injector. See https://clusterbusters.org/forums/topic/2446-extending-imitrex/ You can also get your doc to prescribe vials of trex and syringes to create your own doses. And you can often get lower prices (not low by any means, but lower) with coupons from sites like www.goodrx.com. Do try the 5-Hour Energy. It does help a lot of people. And keep us informed about your O2, please. Have never heard about the frankincense. If you get a definitive feeling about its effectiveness, please let us know. Some people have found that having their feet in a bathtub of very hot water during an attack will help to calm it. Maybe you want to look over the list of triggers here, in case there might be something else that's bringing on so many attacks. https://clusterbusters.org/forums/topic/4568-triggers/ Bless you a hundred times for your willingness to do the psilo trial.

F'T, some thoughts. What's your total verapamil dosage? 960mg/day is sometimes needed for effectiveness. Drink down some caffeine as you start on the O2. Can be coffee, but an energy shot such as 5-Hour Energy is stronger and usually better. Cover any open holes in the mask and be sure you have a snug fit. Get deep breaths out and in. Start with a strong breath out. The idea is to get as much O2 into your lungs as possible and expel as much room air as possible. Start the D3 regimen. https://clusterbusters.org/forums/topic/1308-d3-regimen/ What form is your sumatriptan in: pill, spray, injection? Injection is the only one that works reliably for most people (sometimes the spray does). All that Motrin is really bad for you and almost certainly doesn't help. I get the desire to do something in order to do something. Some people find that melatonin at night helps, starting at about 9mg and working up. What's the trial you're signing up for? You might think about this: busting is demonstrably effective. The drawback for most people is the same as yours for the trial -- having to quit the triptans. The somewhat scary part about a trial is that you might end up with a placebo that doesn't help you at all. With busting, at least you know you're using stuff that has been shown to work. Busting with seeds is almost completely legal, easy to do, and has no psychedelic effects. So I'd consider that ahead of joining the trial. Read about busting in the numbered files in the ClusterBuster Files section. Family is always an issue. I've been amazed at how many people hide their CH from their families. You are fortunate (as you know) to have that support; it's not always like that. But of course the best solution is to do all the right things to be suffering less and less often. I think the good people here can help you with that.

Hopefully my notes in blue above will show up.

You are such a great resource, Pixie! Thank you -- again.

B'H, So sorry about that lack of success with oxygen. I keep trying to think of other oxygen strategies, but it sounds like you've given it the best try you can. You might consider an energy shot such as 5-Hour Energy instead of the Red Bull. Those little 2-ounce shots actually have considerably more caffeine and taurine than an 8-ounce Red Bull, so you might abort better and have less beverage sloshing around in you. So, I have to ask this, and please forgive me if you've been down this road, too. THE CH "lookalike" condition, paroxysmal hemicrania, is not helped by oxygen or triptans, but is sometimes treated effectively with steroids and verapamil, so it kind of matches your response profile. (The standard treatment, highly effective, is the drug indomethacin.) Do you think there's any chance you might have that and not CH? https://www.ninds.nih.gov/disorders/all-disorders/paroxysmal-hemicrania-information-page

Nice to wake up on a Saturday morning and see that the amazing spiny has already done what needed doing. This is the file about splitting Imitrex injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ This the mask she referred to: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit This is an alternative approach to using oxygen, not requiring a higher-flow regulator or the special mask, that has worked well for many: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ With more effective oxygen, the D3 regimen, and the other strategies spiny mentioned (energy shot, melatonin), things should get a lot better. FWIW, the agents used for busting don't show up on any standard drug-testing panels. In the file about LSA, you'll see that the seeds are legal to purchase and legal to possess. He could also try kudzu root, which is 100% legal and has been shown to be quite effective.

Can you make it to the CB conference in Chicago, 9/14 - 17?

I don't know about the cost. You can see clinical trial results here: https://gammacore.us/clinical-studies/ It doesn't look like a very good alternative to oxygen to me, unless O2 doesn't work for you (but O2 works for almost everyone when set up and used properly). Portability is of course a significant advantage over O2. Useless for chronic CH, it appears. I remember that one study suggested that it had some preventive effect regarding subsequent attacks. If that's true, it would be an advantage over oxygen. I always feel like I should add this to any discussion of Gammacore: In the clinical trials, some people got placebos (fake devices). That is a heck of a commitment, to agree that you might be enduring attacks with something that won't help you at all. My appreciation and admiration for the people who volunteered to do that is enormous.

We'd probably urge you to give oxygen another try. For many/most people, past O2 delivery systems have been inadequate (flow too low, mask wrong). 90-plus percent of people for whom O2 didn't work in the past find that with higher flow rates, better mask, and good breathing strategies it will work for them.

I'm taking your word for it on the liquid oxygen -- just something I know nothing about. Lots of people use welding regulators without lpm indicators. They just play with the settings a little until they get a flow rate that's right for them. What you want is for the reservoir bag on your mask to fill up while you're exhaling, so you don't have to wait for your next inhale. Everyone finds the breathing method/rhythm that works best for them, often different rhythms for different parts of the attack. Generally, you want to get as much room air as possible out of your lungs before your first inhale (and you should have already drunk down some coffee or a 5-Hour Energy), inhale deeply, hold it in your lungs for a moment, then exhale strongly . . . The flow of the O2 should allow you to use a rhythm something like that, with the bag always being full of O2 when you are ready for your next breath. The mask: (1) the tubing is made for a barbed fitting, which you don't typically have on a welding setup. Some welding regs come with an adapter for that. You can buy an adapter at a hardware store or online. I guess some people can kluge together some way to get the mask tubing onto a typical welding outlet; (2) if there are open holes in the mask (a circle of little holes) cover them up with your thumb or tape, so you get as little room air as possible when you are inhaling; (3) don't use the strap to hold it to your face.

Taqua, some basics. If you're diagnosed with CH, the first thing you want is oxygen. A doctor can prescribe that. It will abort your attacks fairly quickly, with no side effects. Most doctors are idiots when it comes to CH. You will have better luck if you can get to a headache center. There are certain standard pharmaceutical prescriptions for preventives and abortives in addition to oxygen. You are right -- there are no standard "pain" medications that will help you. If you can't see a doctor or one won't prescribe oxygen, we can talk about alternatives using welding oxygen. Check on this list to see if there's a recommended doctor near you. The vitamin D3 regimen, described here, helps most people. Not usually immediately . . . but over time it has been very helpful. Try drinking an energy shot such as 5-Hour Energy, or maybe even a strong cup of coffee, at the first sign of an attack. That might help. Consider taking melatonin at night, maybe starting at about 9mg and working up until you find a level that works for you. I'd suggest that you look at the "Triggers" document over in the ClusterBuster Files section of the board to be sure that you're not making things worse for yourself. Alcohol is a major trigger for almost everyone with CH. Food with MSG in it also seems to have bad effects for many.