CHfather

Combinations of often-prescribed meds can trigger it. In these two cases, additions of lithium in one case and sodium valproate in the other resulted in SS. Serotonin syndrome in patients with headache disorders; Prakash S, Adroja B, Parekh H; BMJ Case Reports 2017 (Aug 2017) Tags: Serotonin syndrome (SS) is an iatrogenic, drug-induced syndrome caused by serotoninergic agent. Various serotonergic drugs are used in different headache disorders. Therefore, a possibility of developing SS exists in patients with headache. Herein, we are reporting two patients with headache disorders who developed SS.Case 1: a 49-year-old man had a 6-year history of episodic cluster headache (CH). However, he had never been diagnosed with CH before reporting to us. He had been receiving amitriptyline, tramadol/acetaminophen combination and flunarizine. Lithium was started for CH. He developed features consistent with SS. The patient responded to cyprohepatdine.Case 2: a 36-year-old chronic migraineur was on amitriptyline. Addition of sodium valproate led to the development of new features that fulfilled the criteria of SS. The patient responded to cyprohepatdine.As SS may be fatal, there is a need to increase awareness about SS in physicians treating patients with headache. http://www.docguide.com/serotonin-syndrome-patients-headache-disorders?tsid=5

Yes, it helps a lot of people. During a cycle, melatonin is more depleted than it is normally, so you might need more than 10 mg. Some people wrongly think the purpose of the melatonin is to possibly help you sleep through an attack, but the actual purpose is to rebalance very low melatonin levels.

Great advice from jon'. D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Also, read about "busting" in the numbered files in the ClusterBuster Files section.

Batch, I just noticed that your birthday was a couple of days ago. Hoping it was a good one. Just taking this opportunity to thank you for all you do.

+++ to spiny's post (as always). Just a couple of notes. Oxygen is an abortive. It stops attacks. It works when properly set up and it has no side effects. Another commonly prescribed abortive is sumatriptan, which comes in many forms -- pills, nasal spray, and injections. The injections work best; the pills generally don't work at all. Triptans have some side effects, including often causing rebound attacks and extending cycles. So they should be used only for breakout attacks that aren't controlled by oxygen and energy drinks. Verapamil is a preventive: it helps stop attacks, or make them less severe. Side effects, of course. It is strongly recommended that it be monitored. The D3 regimen is also a preventive; in general, the only side effect is feeling healthier. Melatonin at night, starting at around 9mg and working up to a dosage that helps (sometimes in the 20-30 mg range). As you look around the board, you will see person after person talking about the great effects of "busting." Be sure to read about busting in the ClusterBuster Files section. Most doctors know roughly half as much as spiny knows, if they even know that much. You really have to go in there prepared, and then really insist, particularly regarding oxygen. And be sure to get back to us as you and he move forward!!!

TK', For a question like that one, you might be best off to PM Batch directly. He'll have the answer for you fast, while I think many of us hesitate to offer answers to those specific types of D3 questions. Glad to hear you are going to get oxygen soon! That helps a lot of people with shadows, too. Have you tried ginger for the shadows? Here's what it says over in the CB Files about ginger: >>>A teaspoon of ginger simmered in a cup of water, sweetened to taste, is a pleasant way to hold off the shadows for a couple of hours. Ginger doesnÂ’t dissolve well, so simmer the powder or finely chopped ginger root for a while, and keep stirring while you drink. In hot weather, a very strong ginger ale or ginger beer can do the trick enjoyably. Look in health food stores or delis for brands such as ReedÂ’s Extra Ginger Brew, Ginger PeopleÂ’s Ginger Beer, Natural Brew Outrageous Ginger Ale or Blenheim 1903 Hot Ginger Ale. The usual ginger ale used for mixers, such as Schwepps or Canada Dry, is not strong enough. A company called The Ginger People makes strong ginger candy in several varieties (www.gingerpeople.com).<<<

Over in the ClusterBuster Files, under "D3 regimen," the specific ingredients for that regimen are presented in a table. You should take what it says there. Have you tried ginger for shadows? Here's what's written in another document over in the ClusterBustre Files section: >>>A teaspoon of ginger simmered in a cup of water, sweetened to taste, is a pleasant way to hold off the shadows for a couple of hours. Ginger doesnÂ’t dissolve well, so simmer the powder or finely chopped ginger root for a while, and keep stirring while you drink. In hot weather, a very strong ginger ale or ginger beer can do the trick enjoyably. Look in health food stores or delis for brands such as ReedÂ’s Extra Ginger Brew, Ginger PeopleÂ’s Ginger Beer, Natural Brew Outrageous Ginger Ale or Blenheim 1903 Hot Ginger Ale. The usual ginger ale used for mixers, such as Schwepps or Canada Dry, is not strong enough. A company called The Ginger People makes strong ginger candy in several varieties (www.gingerpeople.com).<<<

Many/most people find they can drink an energy shot/drink at night and not be kept awake by it. In the US, the low end of the "normal" vitamin D range is 30 ng/ml. The average level of people responding positively to the D3 regimen is 81.4 ng/ml; the range of responsiveness levels is 34 ng/ml to 149 ng/ml.

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.