CHfather

So first step ought to be to try to get indomethacin. It will tell you if you have HC. It's an unpleasant med that had gastrointestinal side effects that are severely uncomfortable for some people and not so bad for others, but it might take away your pain. Also, start on the D3 regimen: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 You could share this with your doctor who "hasn't heard of anyone doing [oxygen] ": https://jamanetwork.com/journals/jama/fullarticle/185035 If you have CH, you are indeed getting a "crapload," since it's all crap in terms of treating CH. No one has ever prescribed a triptan (such as Imitrex)? Seems weird. Nah. Not really. Some people get CH attacks from marijuana, but you don't. Most people with CH smoke, but lots don't and never had. ~80% (my guess) of people who quit smoking say it has no effect on their CH.

The usual excellent information and advice from Freud. And his follow-up question is very pertinent. If your headache is constant and meds that should help with CH don't work (though we'd need more information than "crapload" to make this assessment ), you might well have hemicrania continua (HC), which has these characteristics and is treatable with the drug indomethacin. If indomethacin wasn't part of the crapload and the symptoms match, then you want to try indomethacin. Affect only one side of your head Are daily and continuous with no pain-free periods Cause moderate pain with spikes of severe pain Respond to the prescription pain reliever indomethacin (Indocin) Can become severe with development of migraine-like symptoms In addition, hemicrania continua headaches are associated with at least one of the following: Tearing or redness of the eye on the affected side Nasal congestion or runny nose Drooping eyelid or pupil narrowing Sensation of restlessness

I made this significant mistake in my earlier post. I should have written sometimes a triptan nasal spray will work. You could probably contact the ER and find out what was in the three-drug cocktail, but I am guessing it was probably something like the Benadryl you mentioned plus Compazine, and Toradol. Benadryl is helpful for CH, but it is not going to have quick results to abort an attack. Compazine and Toradol are usually ineffective against CH. I'm saying that O2 often knocks out a CH attack on its own. One of our CH citizen scientists discovered that Benadryl taken as directed (I think that's 3 times a day at 25mg and 50mg at bedtime) will significantly affect CH. Many people now add it to their treatments.

I'm sorry you are suffering so much. If you have CH, there are lots of things you will be able to do to manage the pain. Since I'm puzzled by several things here, I'm not committed to a CH diagnosis, but if you do have CH, a prescription for oxygen, is what you want first -- particularly since it helped you in the hospital. Oxygen is the #1 game-change and indeed life-saver for people with CH. I'm guessing when you say you "take a lot of Imitrex" that it must be pills. Those pills don't work with CH. Injectable Imitrex typically does work, and sometimes an oral triptan will work. [Edited to note that this should have said "sometimes a triptan nasal spray will work.] Gabapentin is often prescribed for CH, but it's a kind of secondary or tertiary option. Usually gabapentin is prescribed for TN, and I don't know -- making it clear that I ain't no doctor -- what the additional anticonvulsant, carbamazepine, is adding. Toradol generally won't work against CH pain. Corticosteroids can at least temporarily stop or significantly reduce CH pain (one of my puzzlements, given your hospital experience). If you google [goadsby treatment of cluster headache] you'll find a straightforward description of pharmaceutical CH treatments. Many people here would tell you that aside from oxygen, pharma and prescription meds are far from the best way to treat CH, although they can get you through a rough spot, which is probably what you need right now. The vitamin D3 regimen, energy drinks, busting, Benadryl, and a bunch of other things can help more with fewer or no side effects. Given the cocktail you now are taking and the unclear (to me) CH diagnosis or possible multiple diagnoses, I'm reluctant to suggest anything except trying to get some kind of definitive diagnosis, demanding an O2 prescription, and perhaps getting a different pharma treatment plan. You are not now receiving any kind of sensible first-line treatment for CH. I don't want to minimize what you're going through, but lots of people here have been where you are and come out the other side, so I'm hoping you will hang in there.

amy', most people (but not all) find that an energy shot doesn't keep them awake after a nighttime hit. Of course, your reluctance to find out how that might work for you is completely understandable. I wonder whether melatonin at bedtime might help you. Melatonin is low in people with CH when they are in cycle. The purpose is not to help you sleep through any attacks, but to restore melatonin to your system. It's often recommended to start at 9mg and work up to a dose that affects your attacks. Some people get into the high 20mgs or low 30mgs before they get help from the melatonin.

We have heard the rumor before about injectable Imitrex not being available in Canada. From all reports, it isn't true. There was some kind of a shortage a while back. I'm a little confused by what you have written because vials are not the same thing as the autoinjector. With vials, you get the Imitrex and you use a syringe to draw the amount you want out of the vial; autoinjectors come filled with sumatriptan and a syringe needle, you push a button to inject it. I don't know of the status of vials in Canada. They are definitely a better way to go because you can use only what you need, which for most people is about 2 or 3mg, whereas the standard autoinjector has much more than you need, 6 mg. Many people take apart the autoinjector so they can give themselves injections of smaller amounts, but that's not simple to do for everyone. There is also a 4 mg autoinjector of sumatriptan. I don't remember the brand name. This is kind of a compromise -- it's still more sumatriptan than you need, but at least it's not 6 mg. I'm pretty sure that Zomig is just a nasal spray. It's a different triptan (zolmitriptan). Don't know if it would affect you differently.

According to this research, "there is no relation between CH attacks and specific sleep stages or between CH and breathing parameters" Also, overall sleep patterns in CH patients are the same out of cycle as in cycle. https://www.docguide.com/disturbed-sleep-cluster-headache-not-result-transient-processes-associated-cluster-period?tsid=5 BACKGROUND Cluster headache (CH) is characterized by severe, unilateral attacks of pain and a high nocturnal attack burden. It remains unknown if perturbations of sleep are solely present during the CH bout. Therefore, we aimed to investigate differences in sleep between the bout and remission period in episodic CH (eCH) patients, secondly to compare patients in the two phases with controls. METHODS eCH patients, aged 18-65 years, diagnosed according to the International Classification of Headache Disorders 2 nd edition, were admitted for polysomnography at the Danish Center for Sleep Medicine, in bout and in remission. The macrostructure of sleep including arousals, breathing parameters, limb movements (LMs) and periodic limb movements (PLMs) were compared with 25 age-, sex- and BMI-matched healthy controls. RESULTS There were no differences in any of the sleep parameters for patients in bout (n=32) compared with patients in remission (n=23). Attacks were unrelated to sleep stages, presence of apnea episodes, PLM's, LM's and arousals. In bout, patients had longer sleep latency (18.8 vs. 11.7 minutes, p<0.05) and REM-sleep latency (1.7 vs. 1.2 hours, p<0.05) than controls and sleep efficiency was lower (82.5 vs. 86.5%, p<0.05). Patients in remission only had a longer sleep latency compared with controls (17.5 vs. 11.7, p<0.01). CONCLUSIONS The results support the presence of a continuing or slowly recovering disturbance of sleep outside the bout rather than a disturbance occurring secondary to attacks. Further, we confirm there is no relation between CH attacks and specific sleep stages or between CH and breathing parameters. This article is protected by copyright. All rights reserved.

Cheryl, Just for clarity sake, I'm pretty sure THMH meant to write verapamil in the two places where it says prednisone there. And going back to your post, Cheryl, for the reasons THMH gives it probably was not wise for your neuro to "skip the verapamil step." Here's hoping the prednisone alone was sufficient, but again as THMH wrote, it rarely is unless your cycle in ending anyway. At least, I hope you're also doing something with the D3 regimen.

There are several CH symptoms associated with they eyes. https://www.mayoclinic.org/diseases-conditions/cluster-headache/symptoms-causes/syc-20352080 Ibuprofen won't touch a CH, no matter how much of it you take.

Can you be more specific about what your micro-dosing approach has been?

jeb', You can have oxygen at your office. You really, really, really want to have oxygen. If your trex is injectable, you can split your doses and still get fast relief. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ There are other ways to achieve the same result -- getting it in vials instead of in an autoinjector, or getting a prescription for an autoinjector that's 3 or 4mg instead of 6.

Great advice from F'T' and Freud. OXYGEN can't be overemphasized. It's the real lifesaver. If you can't get a prescription, you can do as many do and create your own system using welding oxygen. For most people with CH who have done the vitamin D3 regimen, it has been effective at stopping cycles, reducing severity of attacks, and preventing future cycles (though not right away -- it can take a few weeks, although for a small number of people it's faster). http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Often, a good doctor (and I would say emphatically that you do not have one, given what was prescribed to you) might use a steroid taper (prednisone, usually). In some cases, it will stop a cycle, but in most cases it gives pain relief for a few days before the cycle comes back as you are tapering off the steroid. You can use those few days to jump start the D3 regimen, or to use the commonly prescribed preventive, verapamil, which takes time to get into your system enough to be effective. Regarding "busting" with shrooms or seeds (or L S D), read the numbered files in the ClusterBuster Files section of the board. You might find other things that will help you as you read the other files in that section. The "triggers" document, for example, has been helpful to some people. Also, because CH is often flared up by allergies, even ones you don't know you have, consider taking Benadryl 4 times a day, 25 mg 3 times, and then 50 mg at night. It's a lot, but it can help. Some people find that melatonin at night, starting at about 9mg and working up as needed, helps. Melatonin is an important chemical (hormone??) that is low in people with CH. NOT recommended to take both Benadryl and melatonin at night.

Buried on p2 of the CB Files section: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/

non-rebreather. or, as jon' says, a plastic bag.

You could very quickly set up a temporary oxygen system using welding oxygen for something like $100. Many people use welding O2. You'd have to get a tank from a welding supply store and order a regulator and mask online. If you can get to a welding supply store right away, the time the whole process would take would just depend on how quickly you can get the regulator and mask. If you want more info about this, just ask. (I have the sense that you might not be in the US. I'm not sure if it's as simple as I've said in other places.) [Edit: Crossed posts with Freud here.]

I'm surprised by how many sites recommend replacing masks pretty frequently -- every month or six weeks. I don't think many people in this community do that, but I could be wrong. If you have a standard non-rebreather mask, you can buy a new one at amazon or many other online sites for under $10. If you don't have the premier mask designed for people with CH (http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit), it's a darn good investment. The general advice for cleaning a mask is to wash it in warm soapy water, rinse it with a solution of 10 parts water to one part vinegar (vinegar kills bacteria but is not supposed to harm anything else), and then rinse well with hot water.

Thanks, Denny. i suppose yale has recognized that it has to do something to make up for having me as one of its graduates.

Thank you. I'm looking forward to hearing more. I looked up Mr. Turnbull on google in every way I could think of to learn about his BOL-related activities, but didn't find anything. So I'll have to wait for more news about him from the conference.

Love to know what "back on track" means. I'm sure the official ClusterBusters FB site wouldn't mislead us, but there's no real info there, either. We heard this over and over from Dr. Halpern at previous conferences. I remember getting real excited and being told by more senior people that they'd heard it before. Entheogen couldn't raise the millions required for clinical trials. I gave them money and convinced friends to give them money. So I'm feeling burned by it all, but willing to become hopeful again.

You have to ramp up Verapamil, with monitoring of your heart. Many people with CH need large doses before it's effective -- considerably larger that what is used in its typical application, as a blood pressure med. Something in the range of 960mg/day can be required for full effectiveness. (The need for such high levels is recognized in the medical literature about CH -- it's not something people do on their own -- but many doctors are not aware of this.) The D3 regimen, if followed properly, will probably be more effective for you, and better for you, than Verapamil.

(1) Very nice of you to make that call, spiny. (2) spiny, what has been your experience with the CBD oil? I think I have three questions, assuming that you're using it to treat CH: (a) are you using the hemp-based version or the marijuana-based one? (b) are you using it for aborts? if so, is it helping you? (c) are you experiencing any kind of preventive effect from it, as far as you can tell?

Another thing to suggest to your doctor is that s/he look in any standard medical reference guide (the doctor should have some online one), where oxygen is the #1 recommended abortive. This is all oh so true. In my opinion, O2 is not prescribed for reasons that have nothing to do with its efficacy (which is unquestionable), or even the insurance issues (though they definitely state this as a reason, as CHChris says). It's because most docs have no experience with patients using high-flow oxygen, and there are unsure about how to prescribe it and what to do with a patient who is using it. So you have to persist. Even that is not always sufficient. Government insurance programs (Medicare, Medicaid, VA) are not allowed to prescribe O2 for CH. This is an irresponsible abomination. I think any private insurance has to cover it (could be wrong!) but it can take a lot of work to get them to do so. Maybe you want to call your insurance co in advance to get an idea. If your doc gives you the insurance "excuse," you might say you want to get the prescription anyway and you'll pay out of pocket if you have to. Regarding suppliers -- as CHC' suggests, you should call them after you get your prescription and make it clear what CHC' says: a large tank and a small one, with regulators for each (they use different regulators) that go up to at least 15 lpm, and non-rebreather mask. You do not want a "concentrator," which makes O2 out of room air. I haven't heard of docs prescribing tank sizes, but maybe it happens, and that would be good. The supplier is going to make a lot of runs to your dwelling to replace tanks if they give you only a small one or a couple of small ones. There is also a ,mask very strongly recommended for people with CH, which you will have to buy yourself: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit And you might want to get higher-flow regulators. We can discuss that when the time comes. Fingers crossed that it will be as easy as it should be, and not as hard as we have come to expect it to be.

What Freud said. The example we always give is "Oxygen therapy for cluster headache. Up to 25 min at 15 L/min with non-rebreather mask." I suppose this was taken from someone's prescription, and there are probably other ways of saying it. Where it says 15 L/min; if you get the doc to write 25 L/min, all the better! In case it's helpful to show the doctor, the randomized, double-blind, placebo-controlled study of O2 for CH is here: https://jamanetwork.com/journals/jama/fullarticle/185035

It appears you don't have oxygen. That's something you really, really want for aborting attacks. Lithium is generally not recommended to be prescribed to people with episodic CH because of the severe attacks that follow from discontinuing it. That might explain part of what you're experiencing. For many people, an energy shot (such as 5-Hour Energy) taken at the first sign of an attack can help lessen the severity or even abort an attack. It is also advised that sometimes drinking ice water through a straw aimed at the roof of your mouth, with the aim of inducing brain freeze, can stop an attack. I have no idea how sumatriptan injections or a triptan nasal spray might interact with lithium. But since you can't bust anyway, maybe a triptan would make sense for aborting attacks (?). Oxygen should be the go-to, but sometimes it's easier to get a triptan prescription than to get oxygen.

Regarding lithium and MM, it says this in the ClusterBuster Files (in "Playing Well Together"): >>Anecdotal reports suggest that lithium can greatly potentiate the effects of LSD or mushrooms, and that it can produce very unpleasant feelings. An examination of a number of reports suggested that lithium can either increase or decrease effects. The combination of lithium and tryptamines may even produce episodes that seem like, and that perhaps are, epileptic seizures. If people are taking lithium for treating cluster headaches and it is not working, they may want to talk with their doctor about not taking it any more before trying mushrooms or LSD. If people are taking lithium for bipolar affective disorder, they probably should continue taking lithium, and they should avoid taking tryptamines for cluster headaches.<< Not everything in these older document is completely reliable, but I do believe that some others have commented over the years that this information should be kept in mind. I'm sure that Batch will comment on your primary question, about D3.