CHfather

ClusterCured, thank you for your posts. Your enthusiasm is appropriate and understandable. I hope others will try what you are suggesting and we can learn from their experiences whether you have in fact discovered a cure. Wouldn't that be wonderful! The only way to know is for people to try and report back to us. My only caution is that you are in fact not the first, or the second, or even the third person to have presented a dietary "cure" here, and there are more than a few people at this site who already eat in the same way as the "cure" you describe, without the same success you have enjoyed. One dietary "cure" set forward very strongly was a low-histamine diet. Yours might or might not be that, depending on what specific fruits, vegetables, rice, and tea you are eating (some of all of those are low in histamines, some are high). Since you don't seem to be selling a product or procedure, I assume that your enthusiasm is genuine. It would be quite wonderful if "simply" (I know it's actually far from simple) dropping processed foods, meat, and dairy was the way to a cure. I look forward to input from others who try what you are urging.

"Carotid artery dissection" is not dissecting the carotid artery; it's a medical condition in which layers of the wall of the carotid artery are torn or otherwise separated. I find this interested in part because it might possibly explain some rare situations we see here, and because there is a doctor at UCLA who has found that repairing a certain type of hole in the heart cures migraines in people who have that hole. So there might be some cardiovascular connection emerging. Or not. http://www.docguide.com/carotid-dissection-presenting-prolonged-cluster-headache-patient-episodic-cluster-headache?tsid=5 We present a patient with known episodic cluster headache, who presented with cluster-like headache in the course of internal carotid artery dissection (ICAD) and discuss possible pathophysiological links between the two diseases. It is well known that cluster-like headache could be the presenting symptom of ICAD. However, ICAD occurring in a patient with a known episodic cluster headache was only once previously described. In the end of the manuscript, we propose red flags to help clinicians differentiate between primary cluster headache and cluster-like attacks masking underlying ICAD. Finally, we raise the question whether at least some proportion of those patients with cluster headache and Horner syndrome previously classified as a primary headache disorder might have been secondary cases to ICAD.

Many people seem to prefer the 5-Hour Energy very cold. Blood tests won't really show anything headache-related, at least not that I know of. If you can get a basic panel done, it will tell you what your vitamin D level is. Please be prepared to insist on oxygen. Other things are important, but oxygen is essential if you have CH. Looking back quickly over your posts, it seems that you might benefit from a pharma preventive also, such as verapamil (maybe I missed something). If you feel like you need to wait for your doctor before starting the D3, that's understandable, but in my view unwise. But I suppose Batch has probably told you something along those lines. I'd bet 50 dollars right now that your D level is low even by conventional medical standards, and I'd bet $500 that it's low by the standard of what's needed to counteract CH.

Not exactly sure what you're asking about here. Typically, an O2 prescription would include tanks/cylinders/canisters (whatever they're called where you are), a regulator of at least 12-15 liters per minute, and a non-rebreather mask. In the old days, and sometimes still today, a machine called a concentrator was prescribed, which made O2 out of room air. That's not good for many reasons -- the O2 isn't pure O2 for one thing, and typically those machines don't go higher than 8-10 lpm. It was also pretty common in the old days to prescribe nasal cannula, which are highly ineffective, instead of the non-rebreather mask. Many neurologists are very bad about prescribing O2, for no good reason at all. So be prepared to insist. If you just get the tanks, you can buy the regulator and mask online -- but you should get at least a basic tank/regulator/mask setup from your O2 supplier. Some people feel like they get better aborts if they replace a regulator that has a max of 15 lpm with one that goes to at least 25 lpm. We can discuss that as it becomes necessary. I hope someone else will answer your verap question. I've never understood the procedure for starting/stopping it well enough to give reliable advice.

In the past 20-30 years a lot has been learned about oxygen. Lord only knows what setup you had back then, but high flow plus the mask designed for people with CH have resulted in at least 90% of people now getting reliable, quick aborts with O2. Verap at 240 is too low for relief for most people: up to 960 is recommended. And for most, the timed release form is considerably less effective than standard. Sumatriptan tablets are far less effective than injections -- and the nasal spray works well for many people. In general, triptans seems to make cycles worse and cause rebound attacks. Check out the vitamin D3 regimen. It's been a great preventive for a whole lot of people, and will get you off those meds that might be affecting you. https://clusterbusters.org/forums/topic/1308-d3-regimen/ An energy shot (such as 5-Hour Energy), energy drink (Red Bull, etc.), V8 energy drink, or just plain caffeine at the very start of an attack will often reduce its severity or even sometimes abort it.

Probably, since people with CH have lower melatonin levels during their cycles than outside their cycles.

Hoping it goes away quick, too. Weather.com says ragweed pollen is moderate in the town you list. Maybe some benadryl would be helpful.

A lot of people carry an energy shot with them because it can help in that kind of situation. If you're diagnosed with CH, injectable sumatriptan will also be available to you to deal with those sudden attacks, and you'll carry oxygen in your car. And of course you'll have better preventives, whether that's a pharma thing, D3, busting, or something else. It'll still suck if you get hit out of the blue like that, but it will be much more manageable for you.

Damn. Sorry. You're staying on the O2 for 5-10 minutes after the attack is aborted? That's all I can think of. Adding an energy shot or caffeine to go after the next attack harder? Anything else going on -- high pollen in your area. for example?

A lot of people have said that Florida seems to be particularly backward regarding oxygen. It sounds to me like maybe they're intending to give you a concentrator (a machine that makes O2 from room air), not cylinders. No good, concentrators. This is what they're used to providing (for old folks with COPD) -- a concentrator with a limited built-in regulator, and nasal cannula (and maybe a tiny portable cylinder that would be practically useless for you) I've sent you a PM about a small part of this. But you have to persist: You want at least one large tank (an "M" tank or an even larger "H" tank) and at least one smaller, portable tank (an "E" tank), both with the regulator your doctor prescribed, and an non-rebreather mask (which the doctor should also have prescribed). Usually the prescription specifies the lpm and the non-rebreather mask ("NRB mask"), but not how much O2 is provided and in what form. A good provider will give you multiple large tanks and multiple smaller tanks. jon019 is right that once you get the proper tanks and mask, you can buy your own regulator for higher flow rates. But I would think that it is legally required for them to provide the flow rate that your doctor specifies. Before you buy a regulator, you have to know what size tanks you have. For medical oxygen, the larger tanks take a different type of regulator (CGA 540) than smaller tanks (CGA 870). If you get a 15 lpm regulator, or even a 12 lpm, it just might be good enough for you. I have found that oxygen suppliers are willing to be educated about CH. Many of them have never supplied O2 to someone with CH. Often they have a respiratory therapist on staff who might be willing to talk to you. This is a link to the JAMA article, which might be something you want to provide to someone at one of your possible suppliers. http://jamanetwork.com/journals/jama/fullarticle/185035

Sorry to hear this, Denny. From your reports, he sounded like a guy who really cared about people with CH. Did he leave behind his formula? I feel like we know what was in it, but I seem to remember that the amounts were "proprietary," for some reason.

Prednisone isn't a long-term treatment; it's used over about two weeks to stop attacks so other agents (verapamil in your case) can work. Your verapamil dosage is very low, compared to what many need to actually prevent attacks (as much as 960). Also, the ER version is less effective for many or most people than the standard kind. You don't provide a lot of info, but suggestions would include (1) upgrading your O2 system with a high-flow regulator and the mask designed for CH, and quickly drinking an energy shot (such as 5-Hour Energy) or at least some caffeine as soon as an attack is starting, as you are getting on the O2; (2) starting the D3 regimen right away (read about it in the ClusterBuster Files section of this board); and (3) melatonin at night, starting at about 9mg and working up. Read about busting in the numbered files of the ClusterBuster Files section, and read other relevant docs there, such as the one on triggers.

Carbamazepine (Tegretol) is typically used to treat trigeminal neuralgia, and can be pretty effective for that. For some people, the side effects can be a drawback (dizziness, fatigue, confusion). If it's helpful to you, it won't result in a clear TN diagnosis, since anticonvulsants are also sometimes effective with CH. My daughter was misdiagnosed with TN for several years, and it surprised me because the typical symptoms of TN and CH seem so different to me. I don't think that hour-long attacks like what you experienced are part of the TN profile. The only part of butal-acet-caf that might help CH (if that's what you have) is the "caf." I feel like you really, really need to see that neurologist, and we can hope that because s/he "specializes in headaches" you might get a more reliable diagnosis and maybe better treatments. As Moxie said, keeping a headache diary might be the most important thing you can do to get effective treatment. In your case, I would add a description of the pain (where was it, how did it develop, etc.) with each entry.

There have been a couple of threads here about chlorophyll, where people suggested it had helped them. The threads kind of dwindled out, though, without strong confirmation. https://clusterbusters.org/forums/topic/3789-liquid-chlorophyll/#comment-43523 https://clusterbusters.org/forums/topic/3449-an-interesting-find/#comment-39596

JBH, You might look up hemicrania continua as a possible alternative diagnosis (which is effectively treated with a medication called indomethacin -- nothing I've seen about it being responsive to antibiotics, though). Symptoms of HC are very similar to those of CH, except that HC pain goes on for days. https://www.ninds.nih.gov/Disorders/All-Disorders/Hemicrania-Continua-Information-Page

Do you mean that you have the headache continuously, or nearly continuously, for days, a week, or longer? If so, that's not really consistent with a diagnosis of CH. I'm not arguing with you, but if you don't have CH, then the effectiveness of the antibiotics might be more understandable. I've never read of antibiotics being an effective treatment for CH.

Thank you, Megan'. I met somebody the other day who was in a CGRP clinical trial for migraine, and she said it was amazing as a preventive. She was practically crying as she talked about not being able to get it now that her trial is over. More than a few people think this might be the real deal for CH.

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.