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Darren

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  1. 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
  2. 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
  3. 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 m
  4. 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 prelimi
  5. Also open to feedback from others in Canada that may have ordered tests out of pocket.
  6. 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 eve
  7. I hear you there. LOL. Lots of steps, but, going nowhere.
  8. Yup, definitely agree with you about that. When in cycle, it's good to keep any sense of normalcy wherever possible (and there don't tend to be a lot of opportunities to do so :p). So, I definitely want to keep running, as long as it's not something that's going to cause more attacks. I also just find that in general; running helps me clear my head. When I'm out there, I don't think about anything else. I just enjoy my run. So, for sure, I want to keep doing it. Guessing trial and error is the best approach here. As noted, I only got into running about 3 years ago, so, have limited experience
  9. Sorry, to clarify, I don't mean that running in itself is the actual trigger. But I thought I have read posts where people find that strenuous physical activity and overheating are triggers. Which would often be the result of running. In which case, I was trying to see if there are runners on the forum that still train during a cycle. And if they do, what their experience is like; and if they have any tips / tricks that they keep in mind with their runs.
  10. So, I would imagine there has to be some other runners on this forum. I love to run (distance), and train year-round through the Canadian seasons. I'm a recreational level runner, but do like to challenge myself in races. I do also follow a training plan that has workout runs that are easy, and other workout runs that are much more demanding. In addition to running, I play Ultimate Frisbee at a pretty high level. Outside of cluster cycles, I typically run 3-4 times a week (about 40-50 km / week) + I play Ultimate Frisbee on average once a week + tournaments some weekends. That's all when I'm i
  11. Back with another update. The 2nd prednisone taper (or just coincidence on timing) ended the last one in October of 2017. Enjoyed a 21 month PF remission, until it ended last Friday. Had attacks at 11pm, 4:45am, and 8am. Unusual, as my cycles have always started gradually with one attack every other day, and ramping up to 2-5ish attacks / day within about a week of the start. I've never had 3 within a 9 hour window like that right at the beginning of a cycle. But, one thing we all know is that CHs have a way of changing up on you just when you think you figure them out. Started my Prednis
  12. Figured I should update... Last cycle (from this original thread) did indeed get completely aborted from the Prednisone. I didn't have even one more attack in that cycle. Started a new cycle 7.5 months later. That was the shortest time in between cycles for me. Typically it has been 9 - 22 months between cycles for me, as noted above. Maybe because it was aborted, but, who knows. That was the first time I had ever had a cycle aborted like that. Anyway, I went with the same treatment plan on this current cycle, and had minimal attacks during the 10 day Prednisone taper. Was good for a
  13. Thanks Pebblethecorgi! I just read through Batch's 25 page PDF on the D3 Regminen. That's next on my list. Need to book at appointment with the Dr first, to get my initial levels tested. As for MM, I've read a lot of positive things on busting. I honestly don't even know where I would source them (especially as I would want to ensure I know exactly what I'm getting). I assume most just grow their own?
  14. Been using the app, and it's clean and runs well. Only feedback that I would offer is that I think it would be useful to allow a free text entry. That way the user can enter any comments for an entry that aren't covered by the presets that are available. Or any details that they want to add about a specific entry. Thanks for sharing the app!
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