CHfather

For some people, side-switching might indicate a change in the cycle. For others, it's just another thing that happens. It's not common, but not super-rare. What jon said -- you want oxygen for stopping your attacks. The more you use the injectable sumatriptan, the worse things are likely to get -- more, longer attacks, longer cycles .... And prednisone should be limited to once a year (a taper of two or three weeks). And the amitriptyline is, indeed, probably useless. Get oxygen (Read about that and other things here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/) For now, split the injections when you use them: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Start the vitamin D regimen, which has helped many hundreds, if not thousands, of people with CH: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Consider busting: Read about it at the end of this file -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- or by cliclking on "New Users -- Please read here first" at the top of any page (in the blue banner).

I looked at your pic and thought, "How has he not aged in the 20 years since I met him?"

THANK YOU!

I think some people have found that even years after the expiration date it still works.

I'm not aware of research. It's well-known of course that caffeine helps, and many people think that the taurine in energy beverages, either alone or in some connection to the caffeine, also helps. If you're going to be relying in part or in full on caffeine, try to stay away from it at times when you're not using it for attacks. As with so many other things, it seems you can build a tolerance to caffeine that reduces its effectiveness. Depending on which Monster drink you used, you might well find that it has less caffeine than the much smaller, quicker-to-get-down energy shots, such as 5-Hour Energy. A "standard" Monster has about 80ish mg of caffeine, whereas the standard 5-Hour Energy has more than 200mg, and the extra strength 5-Hour has close to 250mg. Assuming that O2 has worked for you but isn't now -- some/many people find that if the pressure in the oxygen tank is low (maybe 1/3 full, or less full), O2 doesn't work as well.

A sight that is both joyful and sad at the same time. Good going! Does she have the little open holes in her mask (if it's a standard non-rebreather) covered so no outside air gets in when she's inhaling? I'm sure you also know that if 15lpm isn't enough (so that she doesn't have to wait for the bag to re-fill before she inhales), you can get a welding reg for $30-$40 at amazon. Do you have a cart for moving that thing around?

I'm pretty sure all preventives/abortives are okay with the D3 regimen. Take verapmil as far apart as possible from the calcium (because verapamil is a calcium channel blocker). Be sure to cover those open holes in your mask. WOW! I'd love to know what that giant thing is on top of your tank! I get that it's a "regulator," but there has to be more than that going on. Maybe @Racer1_NC knows. I wonder whether there might be some of the green masks (the ClusterO2 Kit) available at the conference? That would be a good opportunity for them, and if they shipped a bunch or someone brought a bunch, maybe they could be less expensive?? Maybe you might contact the conference organizers and ask/suggest?? Another thing popularized by Batch, as an abortive, is to give yourself "brain freeze" by getting something very cold to the roof of your mouth, such as an ice cube. Since you have that bucket there already, maybe give it a try??

A description of hyperventilation from an O2 expert (the ex fighter pilot you mention in another post, who is indeed a hero in this battle) is here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ In essence, it's fast, deep inhales and exhales (each inhale/exhale taking three seconds). The recommended process in the file is 10 3-second inhale/exhales (30 seconds total) of room air, with a forceful "crunch" of the abdominal muscles at each exhale. The author of the file writes, "The exhale part of this procedure is important. Exhale rapidly until it feels like your lungs are empty... They're not. At this point you do the abdominal crunch and hold the chest squeeze until your exhaled breath makes a wheezing sound for a second then throw your shoulders back and inhale as deeply as possible then repeat the exhalation with a crunch in one fluid motion." After the 30 seconds of hyperventilation with room air, take a deep inhale of O2. Hold the O2 for 30 seconds, exhale forcibly, and do another 30-second cycle of 10 inhales/exhales. You should read the file so you fully recognize what's going on there. Are you able to post a photo of your mask? It has a bag that fills up with O2 before you inhale? It has two circles of holes, one or both of which have a white or green gasket on the inside of the mask, but the other is just open holes? (One thing you can do that might help a little is to cover those open holes with tape or with your thumb, because they let room air mix with the O2 you are inhaling.) Your O2 is in a canister/tank/cylinder? So glad you're going to the conference! Wish it was sooner. Have you tried any other strategies to manage the pain of your attacks? Can't even imagine having it on both sides. Some people find that standing in very hot water helps, with some variations from there (for example, some walk out into a cold room and the back into the tub, some get more immersed than just standing, some simultaneously put an ice pack on the head).

Good idea! If you click on your name or the R alongside any of your posts, it will take you to your member page. At the upper right there, click on Account Settings. The first thing you will see is Display Name, with a "Change" button to the right of it. Once you have made the change, it will change your previous posts as well as any new ones.

This must have already been mentioned here, but I don't remember it. "As it turns out, animals and fungi share a common ancestor and branched away from plants sometime around 1.1 billion years ago. Only later did animals and fungi separate on the genealogical tree of life, making fungi more closely related to humans than plants." https://www.scienceabc.com/nature/how-are-mushrooms-more-similar-to-humans-than-plants.html For the scientifically literate: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC48023/#:~:text=This congruence among multiple lines,constitute an independent evolutionary lineage.

Sounds very good: https://ki.se/en/research/centre-for-cluster-headache "The Centre for Cluster Headache includes all research at Karolinska Institutet regarding cluster headaches and offers a well-integrated collaboration between research and clinical operations. The main goal of our research is to understand the molecular and genetic mechanisms behind cluster headache, as well as to identify new targets for diagnosis and treatment."

"Liking" this post is inadequate. Great, great news. You should be very proud of yourself! Did you have a good time?

@Dallas Denny, I agree with what you say here: "the amounts we suggest are, in my mind, sub hallucinogenic but that doesn't mean there's not an effect." I was just confused because in your previous statement you wrote, "while the sub hallucinogenic doses may prove effective for some ailments, I believe clusterheads will require a larger dose."

Denny, is this because you just believe that a sub-hallucinogenic dose is just too little "medicine"? I guess my question here is just clarifying important semantics. To me, "sub-hallucinogenic" means that something might happen (or nothing might happen), but it's not a full-blown trip experience. So I'm asking whether you think a trip experience is essential, not for the trip itself but because that's the only way to get enough psilo? Or do you think a sub-hallucinogenic dose, with some effects, just not "hallucinations," could be okay? That's what Bob W is saying in the next paragraph, and Dr. Schindler actually uses the word "non-hallucinogenic" below to describe some successful busts. Here's Bob, from last year, saying that the the right dose is going to be sub-hallucinogenic: somewhere between no effects and a full-blown trip: "The small doses of psychedelics used to treat cluster headaches are usually enough to produce some felt effects, often described to me as a two-beer buzz. But these are still far less noticeable than the effects of a recreational dose." https://blog.petrieflom.law.harvard.edu/2022/04/18/small-doses-of-psychedelics-for-cluster-headaches/ This is Dr. Schindler [the person conducting the Yale research] reporting on the results of a 2015 CB survey of 496 people: "...infrequent and non-hallucinogenic doses were reported to be efficacious." https://pubmed.ncbi.nlm.nih.gov/26595349/ (To me, non-hallucinogenic and sub-hallucinogenic both mean the same thing -- no "trip.") More from Schindler (https://americanmigrainefoundation.org/resource-library/can-psilocybin-treat-cluster-headache/): "Researchers also discovered that for those who found the psilocybin treatments effective, the degree of symptom and pain relief was not directly related to the strength or intensity of the psychedelic experience. This indicates that “the mechanism [of cluster headache] is probably not directly related to the psychedelic experience itself,” says Dr. Schindler. “That’s in contrast to most studies in psychiatry [involving psilocybin], where the bigger your experience is on the test day, the greater your improvement weeks and months down the line.” Way back in 2006, from one of the Sewell/Halpern/Pope publications: "...given the apparent efficacy of subhallucinogenic doses, these drugs might benefit cluster headache by a mechanism unrelated to their psychoactive effects." https://www.semanticscholar.org/paper/Response-of-cluster-headache-to-psilocybin-and-LSD-Sewell-Halpern/e9aec20b22da4b258365f1e21d17ac3c62a48899

As I remember, Cindi, you are only taking verapamil, probably at a pretty low dose. So the hopeful part is that soon you'll have more of an arsenal. Don't know whether you have started the D3 regimen or tried any of the "Treatments Without Oxygen ..." that are mentioned toward the end of this document -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- which I'm pretty sure I would have linked to in your earlier thread. CH is very unpredictable for lots of people. With the pattern you have described here, I'm also wondering about triggers, which you can read more about here: https://clusterbusters.org/forums/topic/4568-triggers/ . (I'd suggest reading through the whole thread, not just the first post.)

Just a few unreliable thoughts . . . As Bosco' says, I'd try to avoid the triptan. It sounds like you are doing that the best you can. Many people find that ginger helps a lot with shadows. Ginger tea (store-bought made from real ginger, or made yourself by peeling and boiling some ginger (look up specifics on google)); ginger candy (Ginger People or crystallized ginger); non-alcoholic ginger beer. Excedrin helps some with shadows. Some people find that frequent use of caffeine reduces its effectiveness. You gotta do what you gotta do, so this is again just a thought for you to consider. Basically, try not to drink it when you don't need it. You might try some Benadryl, since sometimes persistent CH stuff results from allergies. I think Batch would suggest trying Quercetin first, because it's less drowsy-making. He suggests 3 grams/day, but you might start less than that (or not). Some people stick with the Benadryl (roughly 25 mg four times a day, as tolerated). I'm not sure that O2 is good for shadows. I just don't know. Haven't read of many people using it for that, but if it has worked for you, one possible reason it might be less effective now is that O2 is (for many people) less effective when the tank gets low on O2 -- maybe 1/3 full, or less.

Thanks, dm', The daily Zyrtec reduces but doesn't eliminate the "allergy" symptoms? And fingers crossed for you anticipated heavy cycle not to be too darn heavy.

My daughter (the person in my family with CH) gets intense allergy symptoms at the same time as her attacks -- starting just before an attack and ending just after it. Itchy eyes, nasal congestion, a lot of sneezing. I know some of this is CH symptoms, but she knows the difference. We are wondering whether this is true for anyone else. This is not a D3 question. She's on the full regimen and some of the "Full Monty" elements. There are zero reported pollens where she lives. Her attacks are so mild (right now) that she isn't using O2 to abort, just tea -- so it isn't anything in her O2 system. Like I say, just wondering whether anyone else has had this odd thing happen.

I suppose your doc wanted his/her diagnosis confirmed by a neuro before prescribing any of the other standard CH treatments, such as oxygen. The timing of attacks that you have described surely sounds like CH. I assume you'll have an MRI to rule out anything else (CH can only be diagnosed from the symptoms, not from an MRI or any other medical test). Being new to the condition, you might get some benefit from this "overview" document: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/. As is mentioned in there, lot of people find that caffeine will stop an attack or reduce its severity -- and even though your attacks are nocturnal, most people find they can get right back to sleep even after that caffeine intake. Given the relative mildness of your attacks and your newness to CH, I wouldn't be surprised if a strong cup of coffee would be enough to do the job. Some people do energy drinks of one sort or another (discussed in the document). As others have said, you'll find a wonderfully supportive community here, so please keep us informed and don't hesitate to ask any questions you might have.

I think it is just the case that there are times when O2 is less effective, but I'm also gonna mention that many people (but probably not all) find that when the O2 in the tank gets low (which could be from about 1/3 full to less), it works less effectively. It is also true for some people that only consuming caffeine when starting on the O2 (and not at other times of the day) seems to help make the abort more effective.

Semi, I'm not sure this will be helpful, since you've had CH for a long time and so you might be describing something more unusual than what are called "shadows" here -- ongoing pain at a lower level than a full-blown attack. There is some advice about shadows (under the heading Shadows) in this document, toward the end -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- and there is a lot of discussion of shadows in various threads. You can see that discussion by typing shadow into the search bar that is at the top right side of every page. There's a lot there, but you can skim the summary text to get a sense of what the posts cover. If you're just looking for SUNCT/SUNA information, I hope someone will respond directly, but you can also see the posts about them by putting SUNCT into the search bar.

@Rachael R, The answers to your questions are a little complicated. I think it would help you to read this post. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ And maybe also the part near the beginning, headed "Oxygen," in this post. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ You might still have questions, but maybe they'll be easier to answer. I don't understand why so many doctors say that medical O2 can't be obtained. Did she give you a specific reason (insurance? Covid-related shortages?). Usually, there's a way. This might be in one of the posts, but the way to calculate very roughly how long a tank will last is to divide its capacity in liters by the flow rate you will be using (which is measured in liters per minute). US welding tanks are stated in cubic feet, so you have to convert that capacity to liters. Say you have a 60 cubic foot tank. That's 1699 liters. I know that because I typed [60 cu ft = liters] into google and it told me the answer. If you were using a flow rate of 15 lpm (liters per minute), you would get 1699/15 minutes of oxygen from the tank, or 113 minutes. For a bunch of reasons, you can only really rely on getting about two-thirds of that as fully useful O2 for aborting, or about 75 minutes. You might use a higher flow rate, which would theoretically mean that the tank would empty faster -- but many people get faster aborts with higher flow rates, so they might get as many or more aborts from a tank as someone using a 15 lpm flow rate. (Like I said, it can be a little complicated -- but of course the simple urgency is to get O2 and start aborting with it. The rest works itself out.)

Wow, so sorry that happened. Thank god you made it home, indeed. Horrible. Of course, it's an important reminder to everyone to "don't leave home without it," the "it" being whatever will help you out in that situation, from a small O2 setup in the car to a 5-Hour Energy in the pocket or purse to whatever emergency abortive you have (Imitrex, Zomig, etc.).

In my experience, Imitrex is cheaper using goodrx.com than with insurance. Not "for cheap" by a longshot, but less. Don't know about the others. I also think there are other places like goodrx. Are you splitting those injections? https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Do you feel like the Emgality is helping? Do you know about the vitamin D3 regimen? It can possibly replace your verapamil. https://clusterbusters.org/forums/topic/1308-d3-regimen/ While I'm at it . . . Do you have oxygen?

You want a non-rebreather mask (sometimes called a non-rebreathing mask), not a rebreather mask or a partial rebreather mask. I don't know what the visible differences are. I am pretty sure that a rebreather has two sets of completely open holes in the mask (circles of small holes), while a non-rebreather will have a gasket, usually white, behind at least one of those circles of holes.