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Darren

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  1. Darren

    Question about prednisone

    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.
  2. Darren

    Surgery while taking Verapamil

    Thanks all.
  3. 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.
  4. Darren

    Exercise / Running while in Cycle

    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.
  5. 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.
  6. Also open to feedback from others in Canada that may have ordered tests out of pocket.
  7. 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.
  8. Darren

    Exercise / Running while in Cycle

    I hear you there. LOL. Lots of steps, but, going nowhere.
  9. Darren

    Exercise / Running while in Cycle

    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 doing so when in cycle (just came off a 21 month remission). I've tried a couple of easy runs so far this cycle. And, have been fine so far (got a hit 12 hours after the first run...but I don't think that would be any relation, so long after). Will ramp them up a bit if things continue to go well. I don't expect to be able to train at the normal level. But if I can at least still get our for runs for my own sanity, that's probably enough. I've honestly never really had any luck figuring out my own personal triggers. In any way, shape or form. I feel like the hits just come when they want to. And when they do...you just try to deal with them as best as possible. I've tried to figure it out, but IMO, it just causes even more undue stress, in an already stressful time. That said; I do avoid the things that are considered to be the biggest triggers (alcohol, chocolate, foods high in nitrates, strong smells, etc.). Just trying to figure out if distance running falls on that list somewhere.
  10. Darren

    Exercise / Running while in Cycle

    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.
  11. 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 in remission. Once my cycle starts, I really struggle to maintain all of that. I hate sitting around, knowing that all of my training is just going down the drain. I understand that strenuous activity can be a trigger for some. I have also read that relaxing after something strenuous can trigger some. I have personally found that playing Ultimate isn't a trigger for me. Not sure if it's just the nature of the sport with the stop and go in short bursts. Perhaps because I don't have to sustain a high heart rate for long lengths of time. I have not really determined if running by itself is a trigger for me. I have gone on many runs where I've been fine, with no attack after. But, I do know for sure that on 2 runs; as soon as I finished the run both times, I got hit with an attack within about 5 minutes. One of those two runs was a race, where I pushed very hard. The other was a somewhat tough training run. My wife is always very scared for me to go for runs, both because I could get a hit while out (though, that has never happened), but more so because she fears it will result in a hit shortly after. As noted, yes, it did happen twice, but, there have been a lot more times that I've run and not gotten a hit after. So, I'm really not sure if it is / isn't a trigger for me (ie: do triggers ALWAYS = a hit, or if it happens sometimes, does it still count?). I also realize there are a lot of other variables that could be factors (temperature, barometric pressure, what I ate recently etc. during any one of those given runs). While I know that triggers vary from one sufferer to another; I'm curious if there are other runners around the forum, and what their experience might be. Do you just stop your training when in cycle? I am really having a hard time getting myself to do that. While I've suffered from Episodic CH for 17 years now; I've only really gotten into running during the past 3 years, and this is only my second cycle while being a runner. So, I'm still trying to figure out that part of it. I certainly would not be able to run during an attack (i have read some people find that can help abort an attack....there's no way I could do it, personally). But, between attacks, I would really like to maintain my fitness and my training for upcoming races that I have planned for after the cycle. Curious if runs trigger attacks for you. Curious if maybe there's a target Heart Rate that would be best to try to stay within. Curious if anybody has any other tips. I also know that some say relaxation after a day at work can trigger for them, so, perhaps that's what happened the two times that I got attacks after strenuous runs? Also, for something to be a trigger, I would imagine the attack usually happens shortly after the trigger (what's the time window?). ie: an attack 12 hours later, surely couldn't be considered a result of that "trigger", right? Thanks in advance! I really appreciate the wealth of knowledge in this group
  12. Darren

    Intro / My experience / and Questions

    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 Prednisone taper Saturday at noon. 60mg x 2 days, 50mg x 3 days, 40mg x 3 days, 30mg x 2 days, 20mg x 2 days, 10mg x 1 day. Day 6 of the taper today, so, started up on the Verapamil - 80mg x 3 / day (pretty low dose). So far, no attacks since starting Prednisone on Saturday. I do also have my home o2 delivered already, and ready to go. And, I bought a regulator that goes up to 25L/min. So, will be able to use a higher flow rate vs. the 15L/min that I had previously. I have my Zomig ready to go as well; but, am going to try to only use that if out, and without access to o2. Pretty confident that I started getting overuse headaches due to the zomig on one of my more recent cycles. So, I'm proceding with caution on that one. Works great, and I've used triptans to abort for years. But, if I am able to successfully abort with o2, then that will definitely be my preference (still new to o2). I have an appointment booked with my neurologist on Tuesday of next week; just to see if he wants to make tweaks to anything. Or if there are any new advances that he suggests trying. I suspect he will stick with the same, to try to figure out exactly what does / doesn't work for me. If he does change anything, my guess is that he will up the Verap dose. Especially knowing that he likes to do things systematically. Not sure what to expect with this taper, as Pred did completely abort a cycle for me once before, then didn't work the second time, then the 3rd time, it was a 2nd taper on the same (unsuccessful) cycle; towards the end of the cycle. So, I'm not sure whether it was timing or the Pred that ended it that time. Last time that I went to see my neuro (2017), I asked about the D3 regimen, as well as busting. He suggested holding off on those approaches until we see if the current treatment works / doesn't work. He wasn't suggesting that either were a bad idea. He fully agrees that there are a lot of people finding benefits with them. But, I know he likes to take things one step at a time, so that we know what it is that's working, or what's not working. I'm not a fan of being on all sorts of meds (pred, verap, etc.). But, like all of us, I also would do anything to avoid the pain of these stupid things. I'm ordering RC now, just so that I have that option available to me. In case the taper doesn't work, and perhaps as a maintenance dose between cycles. And will ask him again on Tuesday about D3, and if he can order the blood tests to get it setup. Will try to update again, as things progress. Whenever I'm in a cycle, I lurk the board like crazy; reading everything. And then when my cycles end, I tend to try to completely block things from memory, and don't find myself visiting the forum. But I realize that it's equally important to share my experiences, as we all benefit from knowing how things go for others. Not just treatment wise, but, also just to know that others are suffering the same way. 17 years for me now. Happy my remission periods seem to be getting longer. But, have found with longer remission periods, the cycles tend to be a lot worse (more and stronger attacks). Will see how things go.
  13. Darren

    Intro / My experience / and Questions

    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 few more days after the taper was done, but, on the first day of week 3, I assume once the Prednisone cleared my system, the attacks started coming more frequently and severely again. I got back up to 2 - 4 attacks per day. The verapamil does not seem to be doing much for me, but, I'm aware that I'm on a low dose of it right now at 80mg x 3 times daily. Towards the tail end of cycles, I tend to get the odd all-day lingering headache that is not quite a full cluster attack, but also much worse than a regular headache (maybe they are migraine...not sure). Not sure how to describe them. They tend to get worse as the time passes, but are different than my regular CH attacks (which are typically 1 - 2 hours for me). Well, per the usual, on Oct. 7th, I got one towards what should be the tail end of this cycle. Had a CH attack that morning (about 8am), which never fully cleared. Had that headache all day, and took a Tylenol 3 (with codeine) before bed (called it an early night at around 9:30pm), in hopes that it would help alleviate the pain and let me get some sleep. By 2am, and no sleep, we decided to head to the the ER. After almost 5 additional hours of waiting in brutal pain, I finally was put on an IV. Toradol and Dexamethasone, which helped for about 30 minutes, but then the pain returned full strength. Then they put me on hydromorphone, which cleared about 90% of the pain (but still not all). Enough though that I was comfortable being discharged. Got out of the ER at 9am. Got back to see my neurologist 3 days later (Oct. 10), and he started me back up on Prednisone again, on a 12 (13?) day taper this time. Pharmacy labelled it as 12 day, but my math suggests 13 60mg x 2 days, 50mg x 3 days, 40mg x 3 days, 30mg x 2 days, 20mg x 2 days, 10mg x 1 day. Also still taking the Verapamil 80mg x 3 times daily. I'm supposed to continue taking that for 6 to 8 weeks after the cycle has cleared. Neurologist did not want to increase the Verapamil at the same time, as he would rather confirm that the Prednisone does seem to work for me (as last cycle and the start of this one would suggest). He did send me for EKG (again) and checked Blood pressure etc. since I had been tested before the Verapamil, but not since taking it. That way, if he decides to increase the Verapamil dose later, he has the readings. I am fine with him going at things systematically though. I think it's the right approach instead of just upping the dose and prescribing everything at once. He has been amazing to work with, and got me in to see him on his lunch break, despite being booked solid, well into 2018. I'm super thankful for his thoroughness, and understanding of the condition. First 7 days of 2nd prednisone taper went great. No attacks at all. Day 8 of the taper today, and, I had an attack this morning. I should be at the end of my cycle, as today marks 6 weeks, and my cycles typically last around 4 - 6 weeks. Everything seems to be somewhat status quo in suggesting the cycle is ending (the all day headaches near the end, and the odd random attack). But it's tough to say if that's the case, or if it was the just because of the prednisone that I'm on. I suppose only time will tell. Also have been using the op2timask this round. Still only at 15 lpm unfortunately, as my o2 supplier doesn't have anything with a higher flow, and I did not get around to ordering anything online. The new mask has a much larger reservoir bag, and it definitely does deplete (not completely) while I breath at 15 lpm (the old mast I was using did not, but the bag was tiny, and that's probably why). I still do find that the o2 helps after about 10 - 15 minutes. But, any time I have aborted with o2, I tend to get another attack 3 hours later. Whereas, if I abort with Zomig, or don't abort, I don't get that rebound attack. So, I'm not finding the o2 to be too helpful as it seems to just postpone the inevitable. Still trying though, as I would rather use o2 than other meds if possible. Also find that I sometimes get a weird feeling in my right ear while breathing the o2. Almost like something is blocking. Nothing that I can't deal with. The feeling is minimal. But, odd. Unfortunately, like many of us (probably), when I realized my last cycle was aborted, I took things for granted, and put off looking into the D3 regime. I didn't expect my next cycle to hit so soon, and perhaps got overconfident due to the success from the prednisone in aborting my previous cycle completely. So, I never got around to starting the D3. But, I am back to researching it now, and will be smarter about making it a priority this time around and actually start it. Also looking into busting, and posted a reply in another thread with regards to that. I've never considered it before, but, after 16-17 years of this, I'm willing to explore some other options. No real questions or anything at this time. But, really just thought I would post an update. I see lots of posts from people on the forum, but then they often don't come back to update. So, I figured I would do so. Still soaking up as much info as I can from this incredible forum / resource. It has been so valuable to me (and my family) over the years, and I'm sure for many years to come. Again, thank you to all of you for your contributions!
  14. Darren

    Intro / My experience / and Questions

    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?
  15. Darren

    New version of Register Your Journey Online

    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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