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Everything posted by Darren

  1. For me, it has been: prednisone 5mg oral tablet - 13 day taper 12 tabs x 2 days (60mg) 10 tabs x 3 days (50mg) 8 tabs x 3 days (40mg) 6 tabs x 2 days (30mg) 4 tabs x 2 days (20mg) 2 tabs x 1 day (10mg) Stop
  2. Fingers crossed for you!
  3. Awesome. Thanks again! Sounds like it has what I want / need, and maybe I just wasn't using it properly. I'll give it another look. Much appreciated.
  4. Thanks @CDog. I had checked that one out, but, while playing around with it, I didn't see a way to add meds. Do you use the premium version?
  5. @Jusnobody - Thanks. I'll continue the search.
  6. Does anybody know if it's available to view online anywhere? Or if it will be re-broadcasted on the Nat Geo channel? I'd love to check it out, but, haven't had any luck finding it.
  7. Thanks all. You do raise some good points. I honestly am not even sure why I still track everything. But, it's just what I've always done. So, I feel like I'm supposed to / should continue to do so. Haha. I feel that since I just had my first bust out of a cycle, it would probably be good to track the maintenance doses, and remission time, etc. Was hoping there would be an app similar to what I was using. But, I haven't found anything that meets my needs. I guess I'll either stop logging, or start manually logging in excel. Still open to suggestions though, if anybody else knows of something out there.
  8. Curious what everybody uses for tracking their attacks (time, intensity, etc), meds (customizable with dosage), etc. I used Register Your Journey (app) for a few years, and then Nobism when it replaced RYJ. It seems Nobism no longer works. I reached out to the developer, but, got no response. Does anybody have any apps that they would recommend? I've only found Migraine tracking apps, which don't seem to work well for CH. Thanks in advance.
  9. Well said. I could not agree more.
  10. I've been using this app for a few years now, to track my symptoms and treatments (and Register your journey prior to that). But, recently, when I launch the app, it just synchs, and never ends the synch / launches. I emailed the developer, but, I was curious if anybody else uses it, and might be having the same issue. Aside from Nobism, I'm curious what everybody else uses for tracking everything. Just in case the app is no longer supported. Thanks in advance.
  11. I'd agree with @BoscoPiko. To me it sounds more like migraine. Not sure why a doctor would diagnose cluster headache after only one attack. I would think they would want to hear of a cluster pattern before making that diagnosis. As noted, ibuprofen/ acetaminophen don't help for cluster headaches. Not to downplay migraine, as they are also very painful. But, to me, it doesn't sound like cluster (which is good news).
  12. Yup. Lots of discussion about this on the forum earlier in the pandemic. Definitely seems like a relation. That said, people that have found it happened to them are probably more likely to reply in those threads. So, it may not be as statistically common as it seems when reading the replies. I can say that for me, my last cycle started only a few days after recovering from COVID. And that cycle ended up being three times longer than any cycle I had previously. As snafu noted, the belief is that vitamin d levels get low in the body while fighting covid (or other), so, I guess that can trigger a cycle.
  13. I hear you, and agree 100%. It's especially frustrating when you think you have things like timing, or treatments sorted out after finding a pattern, or having success with something; only for it to completely change / not work on the next cycle. I think we can all relate to that. I do think that maybe / hopefully the D3 and busting might have helped you though. Maybe it's a sign of easier times to come as well!
  14. That said...it definitely could be milder because of the things that you mentioned. So, enjoy the time, but, don't let your guard down. Fingers crossed for you!
  15. If there's one thing that I've learned over the years; it's that just when you think you have cluster headaches figured out...they change. Unfortunately, I don't you can ever know with any certainty. You just have to hope for the best, but, be prepared for the worst.
  16. Sorry to hear about the rough night. Fingers crossed that tonight goes better for you! As they say..."this too shall pass." It may not feel that way, but, it always does eventually.
  17. I had COVID at the end of May, and about 1-2 weeks after shaking it, my current cluster cycle started. And I'm still trying to break out of this cycle. They normally only last about a month with me. Over 2.5 months now, and still going strong. No issues after any of my three vaccines.
  18. I had a somewhat similar experience. I've had episodic CH for about 17 years now. My first prednisone taper (2017) was an 8 day taper. 40mg x 2 days, 30mg x 2 days, 20mg x 2 days, 10mg x 2 days, stop. On this cycle and all subsequent ones, verapamil started in day 5 of the taper. The prednisone completely killed this cycle. But then I had a rebound cycle in 2017, only about 7 months later. This was odd, since I had never had less than 9 months between cycles previously, and had been getting longer remissions, with the most recent one previously being 17 months. My neuro then had me do a 13 day taper as 60mg x 2 days, 50mg x 3 days, 40mg x 3 days, 30mg x 2 days, 20mg x 2 days, 10mg x 1 day. Helped until the tail end of the taper, but then they started breaking through. Verapamil reduced the frequency, but this cycle lasted longer than usual. I was always about 4-5 weeks and my cycle would end. At week 6 with CHs showing no sign of slowing down; my Neuro put me on a second taper (another 13 day). That ended the cycle, or, timing was coincidental. I don't know what it was, but I suspect it was the prednisone, as the cycle wasn't slowing down before the second taper, and the attacks were brutal on this one. On my most recent cycle (July 2019) I did a 13 day taper at the start. CHs started breaking through towards the end of the taper again. After about a week of just verapamil, he put me on a second taper (8 day). Cycle ended. The prednisone definitely works for me. But, like others, I do worry about the effects on the pred on my body. I never had any negative side effects that I noticed. Never felt like crap, didn't gain any weight, etc. Had some extra energy, but nothing negative. About 3 weeks after my latest cycle ended, I got knocked over while playing ultimate. Landed on my shoulder, and broke my collarbone. I'm in week 4 of recovery from that now, and it's going well. I have played a ton of sports for all 41 years of my life. Football and Rugby while younger. More recently (14 years), ultimate, and running (3 years). The only break I ever had in all 41 years was my nose, from rugby in highschool. I know prednisone can mess with bone density in long term use. And am reading that newer research is suggesting that even short term high dose use might have the same effect. So, it makes me wonder if it was related. Likely just coincidence, but who knows. It does scare me a bit. We are all so desperate that we would do almost anything for relief. But, just be cautious, and be aware of potential side effects...as is the case with any medication. There are getting to be more and more options available to us (thankfully). Many swear by Batch's d3 regimen, which I also started mid way through my most recent cycle. Some treatments (like the d3) have less risks involved. But, also it seems like these bloody CHs affect everybody differently, and we all have success or failure with different treatments. So, weigh the pros and cons of any treatment, and just be sure that you are informed of any risks. Do what you need to do to get through them. That's all that any of us can do. This forum is a great resource, with so many extremely helpful contributors.
  19. So, my cycle ended a few weeks ago. And then on Saturday, I broke my collar bone. Not my summer. Lol I'm waiting for my appt with the specialist (8:30am Friday). Pretty confident surgery is going to be suggested, because of the displacement. I'm still taking the verapamil, as I typically take it for at least 30 days (up to 60 days) after the end of the cycle. I dropped the dose from 120mg x 3 daily to 80mg x 3 daily, yesterday. Any additional risks during surgery due to the calcium channel blocker? I consulted doctor Google, and didn't see much, other than letting the doctors know any medications that you're taking. I will obviously ask the specialist on Friday, but, if I know of any issues in advance, I might just stop taking it now, so that it's out of my system before whatever surgery date I presumably get. If there's no harm though; then I will keep taking it just to make sure the cycle doesn't spark back up.
  20. I've been testing things out and running pretty regularly this cycle (3-4 times/week). For the most part, no issues. So, I don't think it's a direct trigger for me. I did for the first time though, have an attack on Sunday; 10km into what ended up being a 13.5km run. I've never had a hit while running. Have had a few right after running. So, this was a first. I had zomig with me, but decided not to take it, to see how continuing to run would work out (another first for me). I did find that it never really ramped up to a full intensity hit. Only to around a kip 2. And went away after about 20 minutes (15 of which were running + 5 as a passenger in the car heading home). My attacks usually last an hour. So, this was really interesting for me. I had read the posts about aborting with physical activity. But I really never could have imagined being able to do it. Will definitely be doing more experimenting with this one. Side note - not sure if it's the verapamil (now on 120mg x 3/day); but I do find my runs feel harder than they do when out of cycle. And I've been running at a much easier pace too.
  21. Thanks all. I didn't have any luck finding anywhere local that I could go for bloodwork without a doctor ordering the lab test. Called several labs, and they all said they need to be ordered by a doctor. Started the regimen late yesterday afternoon, without the loading cycle, and just at the maintenance dose. I realize it will take longer for full effect this way. But I anticipate that my cycle will be done in about 15-20 ish more days anyway. So, it's more of a preventative at this stage, even with the loading cycle, which would have taken about 12 days. I wish I could have gotten the preliminary levels to share on the survey Batch. I honestly did try. I would have preferred to contribute the data to help the cause. . I'll check out grassroots though, and can perhaps order the test after being on the regimen 30 days. Because some of my other vitamins also had d3; it was either go with 8,400 IU/day, or 10,400 IU /day (I have 2,000 and 5,000 IU d3 gels). Started with 8,400. I realize 10,400 is probably more than safe. But, figured that either way, it's 8,400 more than what I'm currently getting on a daily basis. Maybe I should just go up to 10,400 though. I guess tough to say without knowing my levels... Anyway, again, thanks to all for the replies. Kind of feel like a letdown for not being able to get the bloodwork. But it's not for lack of effort.
  22. Also open to feedback from others in Canada that may have ordered tests out of pocket.
  23. I tired to PM @Batch, but the system said he can't receive messages. Wasn't sure how else to ask this question....so.... BATCH - First of all; THANK YOU for everything that you do for this community. I have read a ton of your posts on the D3 regimen, and your willingness to help is invaluable. I am sure it does not get said enough; so, again, THANK YOU. I have ordered all of the vitamins and minerals for the D3 regimen. Unfortunately, I'm not having any luck getting my levels tested. I live in Ontario, and the Canadian government stopped D3 tests back in 2010, as basically every Canadian is at insufficient levels. I've been looking online for other places that I can go to get tested out of pocket. But, so far, haven't had much luck. My question to you, is that I know it's important to test so that I know initial levels, as well as levels once on the regimen (so that I can stay in the goal range). Without the tests, I'm a bit concerned about doing the loading dose. I realize that the loading dose helps to get the levels up in 12-14 days, whereas without the loading dose, it could take 2-3 months. Wondering from what you have heard from others; is it fairly common for people to take this approach if they can't get the tests done? Others feel free to chime in if you have done this. I am still looking into the testing and will be making some calls tomorrow (Monday) to private labs. But, just trying to see what your thoughts are, if I can't get the tests. I did speak with my neurologist, as well as my PCP, and both gave me the same response about not being able to order the tests. They know my condition, and my neurologist knows of low D3 levels being common in CH patients. But, wasn't familiar with your full regimen, and suggests that I only take "normal" dose levels of D3 daily. I am ok with following the maintenance dosages if it's a common thing that people do even without the tests. Thoughts? Thanks again.
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