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Everything posted by CHfather

  1. CHfather

    Episodic to chronic

    'mandy, Yes, that is the mask. Verapamil at fairly low doses (less than 360mg/day) doesn't seem to block the effects of busting, or at least not to block them fully. I think we just don't know about the effects of doses higher than that. Getting back on D3 will almost certainly help him, as Racer said. Gotta take the whole regimen, as I'm sure you know. There might be an effective pharmaceutical treatment available soon. Erenumab (sold as Aimovig) has shown itself to be quite effective against migraine, and studies have shown that it should also work against CH. It's available now for migraine. The long-term effects haven't really been studied at all. For now, it seems like D3 is a better alternative.
  2. CHfather

    Episodic to chronic

    'mandy, I'm sorry for your husband's situation, and I know it's very rough on you, too. Let's start with O2. I take it he's not using it at all right now, because he can't get tanks affordably. Not sure exactly what that means, but many people find that welding oxygen is easy to obtain and less expensive over the long run than medical O2. Can tell you more about that if you want. You say he has the correct mask: Do you mean the "Optimask" or "ClusterO2 Kit" that is made specifically for CH, or do you mean he has a standard non-rebreather mask? I'm going to say that 90-plus percent of people who use oxygen in the most effective way get excellent aborts -- flow rate of at least 25lpm; special mask; tanks (not a concentrator); effective breathing technique; and quickly drinking an energy shot at the start of the attack. If he wasn't doing it all that way, he should try again. We can walk you through it. (I'm going to guess that it might be hard to get him to try O2 again -- It's a perfectly reasonable but sometimes frustrating thing about people with CH: they just don't want to get their hopes up again and then be disappointed.) I can't comment on that effect of the Trex injection, but do you/he know that the injections can be split so each one is a smaller dose? Most autoinjectors deliver 6mg; but virtually no one needs more than 2mg, or 3mg max, to stop an attack. A lot less expensive, too. Here's a file. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Note also that many people are getting sumatriptan in vials with syringes so they can administer their own doses. His doctor was almost certainly wrong about his D level being too high. Strongly urge you to directly contact Batch (who developed the D3 regimen, and who will be happy to help you -- do not hesitate to reach out to him). Send him a message from here: https://clusterbusters.org/forums/profile/17422-batch/ Shrooms have to be taken every five days, usually at least three times and generally more for people with chronic CH. Triptans block the effectiveness of shrooms, so he can't use the Trex while busting with MM.
  3. There is a tendency among people with CH to feel that an attack is probably coming on but to hope it isn't, and to wait and see. Many have learned to drink that caffeine as soon as they have the first sense of an oncoming attack. Might result in sometimes drinking it when it's not needed, but will also give a quicker abort if it is. For many people, the first sign isn't even pain, it's just a "something's wrong" feeling that they have learned to associate with CH. Please do post your other questions at "Share …."
  4. It's not likely that the verapamil is working. Usually it's a couple of weeks before there's enough in your system to have an effect. Possible, just not likely. More likely that your cycle is ending. I wouldn't go so far as to call your doctor a quack. He prescribed the right basic stuff -- verap and a triptan -- and even that is a lot more unusual than it ought to be. Not prescribing O2 first does push him toward some unfavorable category, though. The effects of triptans on subsequent attacks and cycle length has been studied with different results. Sometimes using MM produces what are called "slapbacks" -- bad or more frequent attacks after doses. It's almost certainly not going to re-start a cycle that's ended, but you might not want to expose yourself to slapbacks unnecessarily. Just my two cents.
  5. It really is crazy-making. I think for Jon as for me that's not just an expression -- I have this momentary combination of rage, frustration, and bewilderment that feels literally crazy. And the thought that this son of a bitch has "many CH patients" that he's torturing for no fing reason at all . . . Crazy, crazy, crazy, crazy. Beyond that, Javan, first of all good on you for taking assertive responsibility for your treatment! You can almost certainly split your Imitrex injections if you decide to get them. They typically come in an auto-injector that shoots 6mg into you, but most people need only 2mg or at most 3mg. Here's a file about breaking open the injector so you can manage your own injections, but there might be newer types of injectors now that are harder to break open. Check youtube. Here's the file: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ I'd take a hundred-dollar bet that the doctor isn't going to "research" MM at all, or if he does, the results of his "research" will be negative. In any event, he can't advise you about MM, and I think he's not even allowed to know you're using it. Meanwhile Yale Medical School is doing a clinical study of the effectiveness of psilocybin on CH.
  6. CHfather

    Aimovig, new CGRP inhibitor

    Thank you, thank you, thank you.
  7. CHfather

    Aimovig, new CGRP inhibitor

    Thank you so much for letting us know, Lenny'. Hoping for the best for you, and looking forward to learning anything about the Aimovig. I hope maybe the dex taper will stop your cycle again. Did your doctor tell you anything about the likely effects of Aimovig -- Is it supposed to stop a cycle pretty quickly, or mainly be a longer-term preventive? Will you be going back regularly for injections, even if you're out of cycle? Is it as expensive as has been reported in some places (~$7,000/year, as I recall)? I'm really praying that Aimovig's going to do what it's been said to do.
  8. Javan, People do find, as you did, that very vigorous exercise can stop an attack or reduce its severity. More than one person here has said that sex, with another person or solo, aborts an attack for them (others find that unimaginable). But, as you say, it won't prevent an attack. Some people have found that vigorous exercise triggers an attack. As people here keep saying, it's different for everyone. I don't have CH; just my daughter does. People here probably helped save her life; I'm just trying to repay a little. If you have access to tanks and regulators, that would be fabulous. Maybe your doc friends can even get you a basic mask. The type you want is called a NON-REBREATHER mask. You can also order one from amazon or elsewhere online, for about $5. There's a better one, made for people with CH, here: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit It has a tube that you can use without the mask. If your medical friends are really good to you, maybe they can fix you up with a demand valve system (in which O2 flows instantly when you want it but not otherwise -- no reservoir bag to fill and empty as on other masks).
  9. I guess I should confess the personal source of my frustration, beyond what we have heard from scores of people here and at the FB group. My daughter didn't get good advice about her CH when she was just about Javan's age. Her supposedly top-notch big-city neurologist finally prescribed O2 after years of feeding my daughter crap drugs, having first misdiagnosed her CH for years as trigeminal neuralgia. But that neurologist prescribed a concentrator and cannula, which of course had no effect. And we hadn't yet discovered the great people at this forum. So I sat with my daughter on nights as she suffered through multi-hour attacks with nothing to treat them, believing that oxygen didn't work for her. After I found ClusterBusters, I tried to get welding O2 for her and failed miserably and foolishly. I finally contacted her medical O2 supplier and demanded cylinders and a mask. It was hard to convince them that that was what she needed, but finally I did. My daughter didn't believe it would help her, and was very resistant to the things I was doing to make all this happen -- even angry at me for insisting. And I will never forget the moment when she did try it and the pain melted away. Jon' has talked about tears of happiness; for my daughter it was giggles; it was me who was crying from happiness. To be honest, oxygen mostly still works very well for her but sometimes it doesn't, but God only knows where she (or I) would have been without it.
  10. Javan, how many people have to tell you that if you have CH, oxygen will save your life? I have no idea what you're talking about, and it's really frustrating me. You inhale O2 at the first sign of an attack and something like 10-15 minutes later, most of the time, you can go on with your day. Triptans will f you up in the long run. Steroids will double f you up in the long run. Caffeine is not going to be effective in the long run, and you can't live a lifestyle of drinking caffeine all day. It will f you up (and, no matter what you think, it doesn't help, if it is CH that you have). ONLY oxygen will abort your attacks without eventually fing you up in some way. You're not "hooked up to an oxygen tank all day" -- you use it when you have an attack. You can make a nice portable backpack and take some with you pretty much anywhere. If you have psychological issues about using O2, I'd recommend seeing a shrink. You don't even have to use a mask if that bothers you; you can breathe through a tube so your face isn't covered. You CANNOT get by without O2 in the long run without a huge amount of completely unnecessary suffering. They aren't called suicide headaches for nothing. You can't smoke while using O2. Your dog hair and other messes and smoking pot aren't going to have any effect on your O2. And, to repeat what I said yesterday, Zomig, the triptan, is an abortive, as is Imitrex, which is the injectable triptan. They're not preventives. They are very powerful stuff that you would only subject your body to because you want to end an attack. You can't take them all day, or take them as though they were preventives, because you'd be killing yourself, and you'd also be making each subsequent headache worse and each cycle longer. There is a reason things are done as they are. I admire your truthfulness and your inquisitive spirit and your complete determination to remain as "normal" as possible. CH sucks, big time. Improperly treated, it has destroyed many, many lives. Your passions for life will see you through, and there are very promising treatments on the horizon, so that you almost certainly won't have to go through what people before you have endured. The founder of this site started taking psychedelics because for him, it was try that completely untested idea or commit suicide. Most people here who take MM or other psychedelics hate the experience. But they do it because it's the best thing they've found, with the fewest side effects -- for prevention. But they all, or virtually all, have O2 for abortion. I'm not recommending that you take psychedelics; I'm trying to help you see what CH can become if you don't deal with it sensibly. Now the D3 regimen is working pretty big wonders for hundreds of people and, as I say, it's possible that a very effective preventive, Aimovig, might be very helpful. Don't just read about the D3 regimen, do it. The guy who created it is an amazing person who will help you in any way he can, and he's there for you pretty much 24/7. And get the damn O2.
  11. Javan, responses to a few of your questions/comments. Topamax is not a triptan. Overall, there are two approaches to dealing with CH -- prevention and aborting. Verapamil, for example, is a preventive. It won't stop an immediate attack; it's meant to reduce or eliminate attacks over the longer run. D3 is a preventive regimen. Abortives are meant to stop an individual attack, or at least reduce its severity. Your caffeine is an abortive, but it won't prevent attacks (no matter what you think). Oxygen is an abortive; triptans are abortives. The zolmig Jon' mentioned is a triptan--zolmitriptan. Imitrex is a triptan--sumatriptan. The word "busting" is used here to refer to a specific preventive method, which is taking psychedelic substances. Read about busting in the numbered files in the Files section. You only use oxygen to stop an attack; it's not a preventive. You only use it when you're having an attack. People have developed neat ways to take small cylinders with them in backpacks. It always makes sense to me to try indomethacin for anything that seems like it might be a hemicrania (your notes from your doctor friend). This rarely happens; again, I don't know why doctors don't look for the simplest explanation first. Generally, indomethacin only treats hemicranias, not CH, so it's helpful for diagnosis.
  12. Javan, it is possible but not likely that you'll be attack free for some number of years after this episode ends. It's possible that your cycle will only last six weeks, but there is no "normal" or "typical." You really need to not assume that you won't get hit again in six months or a year, or even that this cycle won't go on another six weeks, and be ready. The effectiveness of simple caffeine typically lessens over the years for people with CH. I strongly recommend that you read about the D3 regimen and start it. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 As spiny says, do what you can to get oxygen -- the best abortive there is, with no side effects. A doctor can -- but, for crazy reasons, often won't -- give you a prescription. Without insurance, your best route might be welding oxygen, for which you don't need a prescription. Your mushroom experiment wasn't unusual. People can get attacks while taking them. Most people use them to stop a cycle or try to prevent cycles through "maintenance dosing." 5 days apart. Some people are finding CBD oil to be very effective. There's a search bar at the top right of each page. Type in CBD to find that content. Most recently, SwiftLaw posted that it has helped him tremendously. Read in the ClusterBuster Files section. Look at the Triggers document there. Keep asking.
  13. CHfather

    Any new treatments

    D3 regimen as a preventive, and energy shots (such as 5-Hour Energy) as an abortive, as Denny says. Upgrade his O2 system: 25lpm regulator and best mask http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit (Just a side note that for some reason when O2 level is low in the tank, it doesn't seem to work as well.) The blood pressure med is probably verapamil. Most people need more than docs prescribe -- as much as 960mg/day. And it should be the NON extended release form. If sumatriptan nasal spray isn't working, he should get the injectable kind. Taking Benadryl 4x/day (25mg, 25, 25, and 50mg at night) helps some people. Check the list of Triggers in the ClusterBuster files section.
  14. CHfather

    Going to be away from the forum for a while

    Oh, Denny. I'm so sorry to read this. You'll be missed here, but many of us won't stop thinking of you every time we come here, and sending you and your wife our very best wishes.
  15. CHfather

    Looking for Help with Cyclic Migraines

    Many people with CH set up oxygen systems using welding oxygen, and it works fine for them, with no apparent complications. They rent or buy tanks from a welding supply company, and buy a mask and regulator online. Batch is usually (always?) right about things, which might make it worth the investment for you to test this with a small tank of O2. Total cost for the test would probably be around $100. Some CH people have found that EMT folks or firefighters might let them use their O2 in a pinch, so I suppose that might be a significantly less expensive way to try it, but one or two tests might not be enough to tell you definitively whether it helps you or not.
  16. CHfather

    Looking for Help with Cyclic Migraines

    Lily', I'd do the D3 regimen for sure -- and, to partly answer your original question, several migraineurs have reported here (usually people with both CH and migraines) that busting was very helpful for them. MoxieGirl has written a lot about that over the years. I don't know how to easily find what she has said. I entered [moxiegirl migraine] into the search bar at the top right, but got a bigger mixture of posts than I had expected. But you can find things using the search bar if you're persistent enough, or maybe go to her member page -- https://clusterbusters.org/forums/profile/19896-moxiegirl/ -- and look through her posts. I know that Moxie started by doing "standard" dosing with psilo and seeds, and I'm pretty sure that worked, but then she modified her approach later. Sorry I can't be more helpful. You could PM her from her member page, too. Has anyone suggested that new migraine preventive, erenumab (brand name Aimovig), as something you could benefit from?
  17. CHfather

    Smoking and CH

    Thank you, Joy'. Rozen is a serious CH researcher. Seems like a strange hypothesis to me, but he knows more than I do. I don't even know what the first principle means -- "the need of double lifetime tobacco exposure" -- but I guess I might understand it if I read the whole document. Appreciate your posting this.
  18. CHfather

    Smoking and CH

    John Bebee posted this on his Facebook page today. I hadn't seen it before. http://www.thejournalofheadacheandpain.com/content/14/1/48 The conclusions: >>Patients with episodic CH who are also smokers appear to have a more severe form of the disorder. However, it is unlikely that between CH and smoking there is a causal relationship, as CH patients rarely improve quitting smoking. <<
  19. CHfather

    Going The Scuba Route to Get Oxygen

    Thank you for all this, Sam'. Too technical for me to understand, since I don't need it, but worth understanding for anyone who does need it and for whom it's the best alternative. I'm inclined to think that welding O2 is a simpler way to go, but again, for some people maybe not. It's not clear to me how you get the tank filled with pure O2, but maybe that's your next topic. Or are you saying that you used "an O2 cylinder" (as you say in your post) and not a SCUBA tank, and attached a SCUBA regulator to that? BTW, in case it isn't six years before your next cycle, are you considering the vitamin D3 regimen? You probably get a lot of sun in your job, but it still might not be enough to prevent or treat cycles: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708
  20. CHfather

    Ketamine infusion Therapy

    We'll hold good hopes for the ketamine. There are people here who have it prescribed as something they take regularly. If you put the word ketamine into the search box at the top right of the page, you'll see some of those. I think that if you put the words ketamine and ricardo into the box, you'll find a report from one of the long-time members here. Regarding O2, you can get a mask that allows him to breathe through a tube, so the nose isn't involved. Many people do it that way. It's also just a better mask system, made specifically for CH. Our very strong overall experience is that people who have found that oxygen didn't help much did a whole lot better with a higher-flow regulator and a better mask (and sometimes with better breathing technique). If you think about looking into this more, let us know.
  21. CHfather


    You might get some responses here. The hot spot for DALT talk historically has been the Facebook group called "Cluster headaches (trigeminal autonomic cephalagia)." Just checking over there now, it seems a lot less focused on DALT than it once was, maybe because DALT is much harder to acquire than it once was (as I understand it). That's a closed group, so you have to apply for acceptance, but in the past that has happened pretty quickly.
  22. CHfather

    A (Pleasant) Update!

    Thing about the redneck bag is that it doesn't really solve the no-mask problem. But it does mean you use the O2 less often, and that might mean the mask is less important and you can get what you need in the short run from the cannula tubing. Batch's recommended hyperventilation approach is described in the redneck bag entry. Basically, it's ten 3-second inhale/exhale cycles using room air, then a deep inhale of the O2 that you hold for 30 seconds and exhale forcefully; then ten more 3-second inhales/exhales; then back to the O2. The 3-second things are a deep quick inhale followed by a forceful exhale (forceful exhale would in all cases include a stomach "crunch" to get as much air as possible out of your lungs). Batch has some cautions and indicators in that file, which you should look at.
  23. CHfather

    A (Pleasant) Update!

    Also . . . Are you trying cold 5-Hour Energy shots at the first sign of an attack? (Maybe you've already answered this.) Did the doctor prescribe any Imitrex? Do you know what type of Verapamil you're on? Many people say the fast-acting (as opposed to the timed release) works better for them? What's your dosage? Is he going to monitor you and raise the dosage?
  24. CHfather

    A (Pleasant) Update!

    If you have Amazon Prime, or probably if you pay extra for fast shipping, you can have this mask (or one like it) in a couple of days: https://www.amazon.com/MEDSOURCE-Adult-Non-Rebreather-Oxygen-Mask/dp/B004Z8V47G/ref=sr_1_3_a_it?ie=UTF8&qid=1532090532&sr=8-3&keywords=nonrebreather%2Boxygen%2Bmask&th=1 Also, I think you can remove the cannula end and suck O2 from the tube, or maybe just suck it from the cannula (???) I'm pretty sure I remember someone talking about that. Not ideal, but maybe it would work. I have also read of some people getting masks from local medical supply stores. Might be worth a couple of calls. I also remember someone going to a firehouse where there were also EMTs and asking for a mask and getting one. Good for you!!! Needless to say, your O2 supplier is disgraceful, and probably should be reported to some state regulator ….
  25. This is evidence that the new monoclonal antibody treatment for migraine, which is an antagonist of CGRP, ought to also be effective against CH. CGRPs induce CH experimentally, suggesting that they are factors in bringing on CH attacks; if they are counteracted, it should prevent/help prevent attacks. Effect of Infusion of Calcitonin Gene-Related Peptide on Cluster Headache Attacks: A Randomized Clinical Trial; Vollesen A, Snoer A, Beske R, Guo S, Hoffmann J, Jensen R, Ashina M; JAMA Neurology (Jul 2018) Tags: calcitonin (human synthetic) calcitonin (pork natural) calcitonin (salmon synthetic) Migraine Read/Add Comments | Email This | Print This | PubMed | Get Full Text Importance Signaling molecule calcitonin gene-related peptide (CGRP) induces migraine attacks and anti-CGRP medications abort and prevent migraine attacks. Whether CGRP provokes cluster headache attacks is unknown. Objective To determine whether CGRP induces cluster headache attacks in episodic cluster headache in active phase, episodic cluster headache in remission phase, and chronic cluster headache. Design, Setting, and Participants A randomized, double-blind, placebo-controlled, 2-way crossover study set at the Danish Headache Center, Rigshospitalet Glostrup, in Denmark. Analyses were intent to treat. Inclusion took place from December 2015 to April 2017. Inclusion criteria were diagnosis of episodic/chronic cluster headache, patients aged 18 to 65 years, and safe contraception in women. Exclusion criteria were a history of other primary headache (except episodic tension-type headache <5 days/mo), individuals who were pregnant or nursing; cardiovascular, cerebrovascular, or psychiatric disease; and drug misuse. Interventions Thirty-seven patients with cluster headaches received intravenous infusion of 1.5 μg/min of CGRP or placebo over 20 minutes on 2 study days. Main Outcomes and Measures Difference in incidence of cluster headache-like attacks, difference in area under the curve (AUC) for headache intensity scores (0 to 90 minutes), and difference in time to peak headache between CGRP and placebo in the 3 groups. Results Of 91 patients assessed for eligibility, 32 patients (35.2%) were included in the analysis. The mean (SD) age was 36 (10.7) years (range, 19-60 years), and the mean weight was 78 kg (range, 53-100 kg). Twenty-seven men (84.4%) completed the study. Calcitonin gene-related peptide induced cluster headache attacks in 8 of 9 patients in the active phase (mean, 89%; 95% CI, 63-100) compared with 1 of 9 in the placebo group (mean, 11%; 95% CI, 0-37) (P = .05). In the remission phase, no patients with episodic cluster headaches reported attacks after CGRP or placebo. Calcitonin gene-related peptide-induced attacks occurred in 7 of 14 patients with chronic cluster headaches (mean, 50%; 95% CI, 20-80) compared with none after placebo (P = .02). In patients with episodic active phase, the mean AUC from 0 to 90 minutes for CGRP was 1.903 (95% CI, 0.842-2.965), and the mean AUC from 0 to 90 minutes for the placebo group was 0.343 (95% CI, 0-0.867) (P = .04). In patients with chronic cluster headache, the mean AUC from 0 to 90 minutes for CGRP was 1.214 (95% CI, 0.395-2.033), and the mean AUC from 0 to 90 minutes for the placebo group was 0.036 (95% CI, 0-0.114) (P = .01). In the remission phase, the mean AUC from 0 to 90 minutes for CGRP was 0.187 (95% CI, 0-0.571), and the mean AUC from 0 to 90 minutes for placebo was 0.019 (95% CI, 0-0.062) (P > .99). Conclusions and Relevance Calcitonin gene-related peptide provokes cluster headache attacks in active-phase episodic cluster headache and chronic cluster headache but not in remission-phase episodic cluster headache. These results suggest anti-CGRP drugs may be effective in cluster headache management.