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Everything posted by CHfather

  1. Thank you again, Adam', and thanks, B'P'. So, GammaCore, which works on the vagus nerve (as Adam said), is an approved treatment for CH. Here in the US, it is something like $600/month after the first month, which is free. Somehow, despite FDA approval, I haven't heard of insurance covering it, although maybe it does for some people. Cefaly, which works on the trigeminal nerve (as Adam' also said), is not FDA approved for CH, but just for migraine (I'm pretty sure). Think I have all that right. ClusterBusters was, at least at one time, very supportive of the development of GammaCore, and some heroic people actually did clinical trials where they could get a placebo device, which would presumably have no effect for aborting attacks (although, as I recall it, as is so often the case, the placebo devices actually did have some effect for shortening attacks). It was always hard for me to understand any broad appeal for GC as a CH abortive, since it generally takes at least as long as oxygen to work, at least according to the clinical trials. But I could see the appeal because of portability, allowing you to potentially stop an attack while out someplace, and because of the possible preventive effect. If it wasn't so expensive, I could see saying "Why not?" and using it for that purpose.
  2. That's a nice post, Adam'. Thank you. Can you tell us how the GammaCore has been for you? It has been worth the cost, I take it (or maybe the "UK" means you are in a system where the cost is not exorbitant).
  3. This is very good advice, but if your doctor is an idiot (I think you have a new one, who might or might not be), it's important for you to know that the standard prednisone "dose pack" won't really work well. Here is the recommendation from one primary CH resource: "Corticosteroids in the form of prednisone 1 mg/Kg up to 60 mg for four days tapering the dose over three weeks is a well accepted short-term preventive approach. It often stops the cluster period, and should be used no more than once a year to avoid aseptic necrosis."
  4. That might help. Some people need still more -- 960 mg or more. Is the verapamil instant release or extended? Most people seem to get better results with instant than with extended. Yes, get on the D3 regimen ASAP -- it's a more effective preventive than verap with a lot fewer potential side effects. There is practically no insurance that won't cover O2, but sometimes you do have to fight for it. I am quoting a passage here from a post by jon019: "....OXYGEN!!!....life changer...saved my sanity, perhaps my life. over the yrs sometimes insurance covered it, sometimes not (always appeal any denial, for O2 have your doc write a letter of medical necessity). note that Medicare has just now approved its use for CH, and many insurers follow their lead. when not covered, i did self pay. either way, my out of pocket was about the same. cheap by any measure, especially compared to triptans like Imitrex, no side effects, fast when flow, mask and technique dialed in, more portable than the stereotype would indicate. don't let anybody dump a concentrator on you.......many a clusterhead bypasses all this nonsense and uses welding O2, "same stuff out of the same spigot"...cheaper yet, widely available....no insurance droids to get in the way. just don't tell 'em you gonna breathe it..." As we have discussed and jon' mentions, welding O2 is a relatively low-cost option. Easy to get, set up, and use. I don't want to oppress you about things you don't have, but getting oxygen is worth almost any sacrifice you have to make. I hope you looked at the link I gave you up above, particularly the part of that file headed "Treatments without oxygen..." None of those are as effective as O2 would be or the D3 regimen can be, but some might help you.
  5. (Part 2) Here's an overview that might help you. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Since you're in a pinch right now, be sure to look at the part with the bold heading "Treatments" without O2 . . . Too much Imitrex is bad for you, and it can cause your attacks to get worse or your cycle to get longer. One way to use less is to split your injections. 2mg is enough for most people, but the injector holds 6mg. Here's some guidance (scroll down 'til you see the videos): https://clusterbusters.org/forums/topic/2446-extending-imitrex/
  6. I am getting the very frustrating "Internal Server Error," so I'm hoping that breaking my message into two parts will help. You could set up an oxygen system using welding oxygen pretty quickly. Maybe check with your doctor's office and see whether she is willing to give you a prescription for medical oxygen (which should have been done in the first place). If not, get started on a welding O2-based system while you look for a better doctor. Start the D3 regimen. It helps some people quickly. Not all people or even most people, but you never know, and you want to start it for the future in any event.
  7. Here's a kind of overview of CH treatments: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ There's some additional information in the reply posts in that thread.
  8. Some people find that when the O2 level in a tank is low, the O2 is less effective, or even doesn't seem to work at all. It's true for my daughter and for at least a couple of others here. Since you've been using O2 for a long time, maybe that's not the case for you, but it did come upon my daughter suddenly after many years of not being an issue. An e tank can of course get low pretty fast. One person has said that if you can increase your flow rate it will work even at low levels.
  9. If you can't get medical O2, please seriously consider welding O2. Here's some info about it: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/
  10. You might try it once. Many/most people find that even a 5-Hour Energy (much stronger than a cup of coffee) doesn't keep them up. If you are in the US (or one of many other countries), suppliers of medical O2 won't provide it without a prescription. There are also some that won't provide it even if you do have a prescription, if you want to pay separately from insurance (or you don't have insurance). And lately we've been hearing about suppliers "rationing" O2, even for people with prescriptions, because of COVID-related shortages. Of course, if you don't have a prescription, you can always get welding O2, which is used by a significant percentage of people with CH.
  11. No need for the kitchen-sink approach, agreed. But as jon' said, at least you should have oxygen, which is not going to cause "further issues." And done properly the D3 regimen has no associated issues, or virtually never has any (and those are stopped if you stop the D3). Do you drink coffee? It helps stop attacks.
  12. You will want to split your Imitrex injections. They are (typically) 6mg, and all most people need is 2mg. 3 at most. Some doctors will prescribe it in vials so you can measure your own doses, and there is a 4mg injector. Here are instructions for splitting doses: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ You can see reported experiences with Emgality by typing Emgality into the search bar, top right of each page. I'd say that for people reporting here, it generally hasn't been very effective, but keep in mind that's a very skewed sample because for the most part the reason people are here is because conventional things haven't worked for them. If you can afford it, it's worth trying. The prednisone is likely to stop your attacks. That's unrelated to the verap. Sometimes prednisone will end the cycle (or the cycle will end while the pred is being used); other times the attacks come back when the pred taper is ended or ending. You can only do prednisone at most once a year. I get where you are concerning prescribed O2. But Imitrex is very expensive (particularly if you don't split injections) and the side effects are not great. You do not want that as your primary abortive -- only for bad attacks. So you still might want to consider doing as many do and setting up a welding O2 system. Maybe not for this cycle, I understand. Similarly, the D3 preventive regimen is better for you and is going to have less potential side effects than verap, let alone prednisone. So please consider getting going on that at some point.
  13. A lot of reasons. One is that they don't know, and are too lazy/uncaring to look it up. Another is that most doctors have very little experience with high flow O2 and are therefore reluctant to prescribe it, even if they know they should. If they have patients who use O2 (e.g., for COPD), it is lower flows. At a very basic level, they don't even know how to write a prescription for high flow O2 for CH. Another is that, as is true so far in your case, something else they prescribe, that they are familiar with, does the job satisfactorily (this also happens when docs prescribe Imitrex--it ain't a great solution, but it does stop the pain, and the patient might not know any better). When that happens, they have saved the patient the expense and hassle of getting/having O2 (regardless of the vey different side effect profiles). Another is that stuff they prescribe doesn't work, but the patient doesn't come back, for whatever reason (finds another doc; finds a different method (e.g., busting, D3); gives up), and the doctor assumes the prescription did work. (I swear I remember reading some study once that said some large percentage of doctors believe that the prescriptions they write for CH are highly effective.) Related to all of the above is that many doctors think pharma first. Sometimes docs will tell people that they'd like to prescribe O2 but the person's insurance probably won't cover it. This seems to me. again, more like an excuse than a reason. And these days, there are actually O2 shortages in some US places because it has all been going to COVID patients.
  14. You are right, Shaun', and your advice is right. And at the same time . . . this doctor seems to know that charles' has CH, and, as Pebbles' keeps reminding us, virtually all doctors have an online or hardcopy resource that tells them what the evidence-based prescription should be. Oxygen will be listed right there, in uncomplicated terms, as the #1 or 1a abortive, along with sumatriptan/zolmitriptan (and amitriptyline probably won't be mentioned at all), so Pebbles' is also right that not prescribing oxygen is pretty darn close to inexcusable.
  15. Amitriptyline is Elavil. If you put each of those words into the search bar at the top right of the page, you'll see a lot of experiences described. There was a time when it was commonly prescribed for CH. I wrote someplace that it seems to be a weird med for CH -- helping some people a lot and others not at all. 150mg seems like a gigantic dose -- 25 is much more common (so I'm glad you found your way there) and we've seen even 10. I'm glad it's helping you. I'd be a little wary of a doctor who won't prescribe oxygen and who does prescribe a med that is not on the standard CH pharma list, and prescribes it at such a debilitatingly high level. OTOH . . . so far, it's working. May that continue. (If the time comes that you want to pursue oxygen again and this doc still won't do it, welding O2 is always a possibility.)
  16. Not the same thing, but interesting: "Low serum 25-hydroxyvitamin D is associated with higher risk of frequent headache in middle-aged and older men" https://www.nature.com/articles/srep39697
  17. Empire', Sorry you are experiencing all this. Yep to what all the other folks said -- unpredictable, often shifting, who knows what effects meds have. Damned thing will fool you every time. Over many years, some people have identified what seem like consistent patterns in how their cycles end. For example, my daughter's typically end with a few days/nights of very severe attacks, and then suddenly they're gone. And sometimes that's not the case and they just taper down, and sometimes she has a few days of severe attacks and thinks it's ending but it isn't, which is a big bummer. It's good to be attentive to these things (you can't really help but be), but trying to figure it out is a risky game if it gets your hopes up. The most important thing is to have your treatments in place -- D3 levels up; O2 with all the proper system components; nasal or injectable triptan for breakthroughs; busting if that's something you want to do. . . . Then you're better able to handle the Ali shuffle and the rope-a-dope when they come your way. Have you tried drinking down an energy shot (such as 5-Hour Energy) or an energy drink (such as Red Bull) or even a strong cup of coffee or some other source of caffeine (spiny likes V8 Energy things) at the first sign of an attack? Generally, these are used along with oxygen, but can make a difference in severity or duration on their own. (And they don't keep most people up at night.) Incidentally, although your verap dose is probably too low to make a difference, it is the general experience (or belief) here that the instant release is more effective than extended release (ER). If you're only taking it once a day, you almost certainly have the ER.
  18. I and others will be interested to hear how helpful the nurtec is. You can split those sumatriptan shots so you're using only 1/3 to 1/2 as much. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ I thought I remembered from your previous posts that you have oxygen. No??
  19. Salt', you really should be considering the Vitamin D3 regimen for prevention. Just as effective as verapamil (probably consideably better, actually) , and a whole lot better for you! I think this is an up-to-date reference -- https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+and+cofactors+in+80+percent+of+people -- but I'm never really sure.
  20. More than a few people have been successful. I don't know how many are chronic. It is a rough go, though, because "headache" conditions generally aren't included as a disability category. I think in most of the successful cases there was an original denial of the claim followed by at least one appeal. The "good" part is that you don't pay the lawyer unless you win (except for fees for making copies, etc.), but that's also potentially a "bad" part, in that the attorney doesn't have a strong incentive to work on a case that's got a low chance of success. I remember a couple of people saying that it was better working with a local lawyer than with a lawyer from one of the big national disability firms. And I remember someone saying that unless you have a gigantic file of doctor visits and medications tried, you probably shouldn't bother. You can put the word disability in the search bar (top right of every page), or some other relevant search term, and see quite a bit for yourself.
  21. [Edit: I was writing this when Capt. K' posted his/her response, which really says it all.] I have four things to say about this, none of which is directly responsive to your question: 1. Rizatriptan (Maxalt) is not really a CH medicine. I think some people have had relief from CH with this drug, but it isn't first line. Here's what the Mayo Clinic says about rizatriptan: "Rizatriptan is used to treat acute migraine headaches in adults and children 6 years of age and older. It is not used to prevent migraine headaches and is not used for cluster headaches." From another source: "Maxalt and Maxalt-MLT are not approved for the treatment or prevention of cluster headaches." There might be a reason you were given this instead of triptans that are more effective for CH. 2. When you say that a 10mg pill will abort a CH attack within 30 minutes, I assume you are describing your experience. For a pill, that's pretty good, 30 minutes, but it's not nearly as good as oxygen or even other kinds of triptans. 3. If you are aborting attacks frequently with triptans, it will put you at risk of triptan overuse headaches and a bunch of other side effects. Not recommended. 4. In general, the best way to find out what others' experience has been with something (a medication, in this case) is to type it into the search bar at the top right of the page. That gives you more posts to look at than the number of responses you are likely to get from a single post. I'm not saying don't ask questions, just saying that in a case like this you will probably get more info from the search function.
  22. I think MR. DUX was one of the guys on that Dynasty TV show with the rednecks from a few years back.
  23. There have been more than a few people here over the years who have had trouble looking at computer screens and phones. One discussion of blue light blockers and other strategies is here: https://clusterbusters.org/forums/topic/6075-computer-help/?tab=comments#comment-60389. A brief discussion of the f.lux app for reducing light emission from monitors is here: https://clusterbusters.org/forums/topic/3627-tricks-for-reducing-light-emission-from-monitor/?tab=comments#comment-41856 That discussion is here: https://clusterbusters.org/forums/topic/8739-glasses-to-treat-ch/page/2/?tab=comments#comment-78997
  24. I can't tell you about the cost, which varies greatly not only by region but also depending on what you get (how many tanks of what size). Insurance should cover most or all of it. Some people have a hard time getting their insurance to cover it; others don't. I don't think anyone would disagree that whatever the cost, it's worth it. Yes, you start it right away as a hit is coming, and you continue for some minutes after the attack has been aborted. The sooner you start, the quicker/easier the abort is going to be. >>>Anything else I may need to know? (I'm sure docs will give info, but I like info from those that have CH as well)<<< Plenty! If by "docs" in your post, you mean "doctors," no way. Won't help you at all. You get O2 based on a doctor's prescription from a medical supply company. Maybe that company will have someone to give you advice, but probably not. It's not complicated in its essence, but there are lots of things you can do to get aborts faster (related to, for example, getting some caffeine into you as you start on the O2; using an effective breathing strategy; having the right flow rate; and having the right mask and other equipment). When you're ready, it can be discussed more. Many documents here that you can read (e.g., https://clusterbusters.org/resource/oxygen-therapy-for-cluster-headaches/ and https://clusterbusters.org/forums/topic/1433-10-oxygen-information/ and the "Oxygen" section here https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/) and lots of youtube videos you can see by searching [oxygen cluster headaches]. In those videos, Bill MIngus is particularly helpful, but you might find others you like more.
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