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Posts posted by Darren

  1. 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.


    Thanks again.

  2. 46 minutes ago, Rod H said:

    I'm not a runner. I walk alot thou and I wouldn't stop training. Just for the fact that exercise helps with depression. When I'm in cycle I usually walk more and never get hit on my walks usually after thou I can count on one.

    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.

  3. 25 minutes ago, Freud said:

    I have seen people post that running, push ups, exercise helps them abort an attack. But in the year or so I’ve been here I do not recall some one saying it triggers them...

    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. :)

  4. 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 :)

  5. 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.

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  6. 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 :P 

    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!

  7. On 2/5/2017 at 11:10 AM, Pebblesthecorgi said:

    A lot of good advice for you.  Everything you are doing and have prescriptions for is for aborting the headaches except the verapamil.  The D3 regimen should help prevent future headaches.  You might consider looking at DALT and/or low dose MM as a potential preventative.  Another easy thing is antihistamines (benadryl 25-50mg) which some find helpful.  Steroids used as you describe are almost always ok with few side effects, chronic or frequent use leads to troubles.


    Verapamil is a mixed bag.  If you have predictable cycles you could start before you anticipate a return.  If your cycles are far and few between its hard to stay on but you never know when the hit is coming and then you have to use other busting strategies.  Your dose is pretty modest.  If it works as an preventative

    I personally would stay on it and avoid alternative off the grid meds

    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?

  8. 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!

  9. 10 minutes ago, CHfather said:

    To be clear here -- the bag should empty as you breathe in, and then refill as you hold the air in your lungs and exhale it.  If it's not depleting at all, something is wrong.

    Hmmmm. There was definitely something wrong then. The bag never emptied. I assumed it was because the hose from the tank was always pushing o2 into the bag faster than I could empty it, and therefore it was always just full. I guess that explains why I only had limited success with o2. Good thing I bought the cluster o2 kit for next time. 

  10. Thanks again. I was actually just reading that same d3 thread where batch has pics of the three bottles from Costco. It's Way less complicated than I had thought. I realize that's his initial dose, and it has been modified slightly since. But honestly the reason I hadn't gotten to trying the regimen was that it sounded like it required sourcing a ton of different vitamins, and would require popping a whole lot of pills every day. Seeing what I see now, it's not at all complicated, and I'll most definitely give it a go. 

    Re: the flow rate and reservoir bag; it never actually depleted from what I saw. But I'll enquire about a higher flow regulator when I need it next. I do think I should have stayed on the o2 longer after aborting attacks though (from what I've read). And perhaps the new o2 kit will help on the next round too. 

  11. Thanks Dallas Denny. Will give them a look. I had a quick check, and it looks like they do ship to Canada, so that's good news. 

    Another thing that I noticed with this cycle, which might be worth mentioning...

    I wear a Garmin Vivosmart HR+, as I live a pretty active lifestyle with lots of Ultimate Frisbee, and Running. Anyway, a few days before my first attack on this particular cycle, I noticed that my resting Heart Rate was consistently about 10 - 15 bpm higher than usual. Typically I'm at 52 bpm resting HR. I had never seen it go higher than say 55 previously. But a few days before my first attack, my resting HR had jumped up to around 65 - 67, and was consistently in that range. This was before my first attack, and I wonder if it had anything to do with the cluster coming up. I wasn't under any different stresses, and there was no other reason (that I know of) for the spike. Just found it interesting, and thought it might be worth mentioning, as I know a lot of people are using wearables these days.

  12. Thanks CHfather!

    The script for the O2 was for 12Lpm, but my wife ensured that the setup we got would allow 15Lpm, and that's actually what I was using. Unfortunately the place we got the O2 from did not have vavles that would go higher than 15Lpm though.

    I actually ordered the cluster O2 kit and got it a few days ago. So, will definitely give that a go if it turns out that this cycle hasn't actually been aborted. 

    Again, really appreciate your reply. I have read MANY of your posts, and they are very helpful. Like most on this site I'm sure....my wife and I have scoured the internet reading pretty much everything possible about CHs over the years. But this site has most definitely been the best resource.


    EDIT: have read about, but have not tried the D3 regimen. I really need to look into it, but it seems like a lot of sourcing to get everything, and honestly just have not made the time to do so. I do realize that I should make the time though. Especially since it seems to be helpful for so many. I will for make it a priority and look into it for sure.

  13. Wanted to make a post to thank everybody that contributes to this site and message board. I've been an Episodic sufferer for about 15 years now, and have read TONS of useful information through this site over the past few years. THANK YOU all for everything. Being able to read others' experiences, and success stories etc., is so useful. Particularly since most simply don't understand the severity of Cluster Headaches.

    I went years without any treatment for my clusters. Used to get a cluster every nine months (almost to the day), which would last 4 weeks, with about 1 or 2 attacks per day, lasting about an hour each. My remission period extended eventually for some reason, and went to between 14 to 22 months between cycles. But, when they would come back, it was like they were making up for missed time. The cycle would last about 4 to 5 weeks, but I would get 1 - 4 attacks per day (typically every other day for the first week, and then 3 or 4 a day for the next 4 weeks), and the intensity of attacks was way worse. Each cycle got worse.

    My brother used to suffer from Cluster headaches when he was younger. But they eventually went into full remission for him. My family doctor (previous) didn't understand the condition, and told me to take 8 extra strength Advils anytime I had an attack. I explained to him again how often the attacks come in a cycle, and that this scared me. I never did follow his Advil advise, as it seemed ridiculous. He did eventually give me a script for Maxalt pills (rizatriptan), but that was all. They worked as an abortive if I caught the attack in time. But nothing was prescribed as a preventative. I had a couple of days that I ended up in Emerg at the hospital with attacks that were just awful and lasted much longer than usual. Eventually got referred to a Neurologist, who diagnosed Cluster Headaches, and came up with a a full treatment plan. 100% home oxygen through non-rebreather at 12L/min for 15 minutes, Sumatriptan 6mg injections up to 2x / day, Prenisone taper (60mg first 5 days, then reduce by 10mg every three days), verapamil (80mg 3x / day, increasing by 80mg every two weeks, up to 960mg daily). Neurologist did not provide any prescriptions, but sent the letter to my family doctor. I went to see my family doc, and he shut down every treatment in the letter and would not provide any prescriptions for any of them, saying they were all too risky (yes, even home oxygen).

    I eventually changed family doctors, and was prescribed Amitriptyline as a preventative. Didn't really do any good. Ended up in the ER again with another really bad attack. Also tried home oxygen near the end of my most recent cycle, but found it would kill an attack, but I would end up getting another attack shortly thereafter. I think the problem MIGHT have been that I didn't stay on the oxygen long enough after the attack went away. I would usually stay on another 5 - 10 minutes, but not 15.

    After my most recent cycle, I changed family doctors again. New doctor referred me to another neurologist and sent me for an EKG. Saw this 2nd Neurologist in April of 2016, and came up with pretty much the same treatment plan, and provided prescriptions as follows (but he provided prescriptions, while the first Neuro did not):

    Prednisone taper: 60mg 2 days, 50mg 2 days, 40 mg 2 days, 30 mg 2 days, 20mg 1 day, 10mg 1 day

    Verapamil: start on day 6 of pred taper - 40mg 3x day. Increase to 80mg 3x day after 1 week. Continue Verapabmil for 6 to 8 weeks after cycle seems to have ended

    Zomig 5mg nasal spray - max 3x day when needed

    Home oxygen: non-rebreather, 10 - 12L / minute, for 10 - 15 minutes

    I had a couple of lead up attacks on Jan 15th, and then one bigger attack on Jan 22nd, which told me my cycle had begun. Started the Prednisone on Jan 23rd, and have not had a single attack since Jan 22nd (previous attacks in the first week were always less frequent and less severe, then fully ramped up by the 2nd week). So, I think the Prednisone has worked, but am still cautious, as I know not that the taper is done (as of 2 days ago), and the Verapamil dose is relatively low compared to what tends to work for clusters....they could come back. So far, so good though. And I'm thrilled. No side effects from prednisone, and the taper went without any issues at all. No withdrawal symptoms whatsoever.

    My previous cluster was so bad that once it ramped up, I ended up working from home for about 4 or 5 weeks, as that was the only way that I could deal with them. Luckily my work is understanding, and had no issues with it. But the last cycle was the worst one I have ever had. It was awful. My wife is absolutely incredible, and so supportive. She knows from the years of me suffering through them, that there's not a lot that she can do. She understands to give me my space, but checks in on me periodically to make sure that I'm ok. She left work several times to drive me home at the start of the last cycle when I was still trying to go to work. She kept detailed logs of food / meds / attacks for me. She made arrangements for the home oxygen and got that all setup. And she stressed herself out so much trying to "figure them out" that she couldn't sleep at night, for fear of my next attack. She is the best, and I'm so thankful that I have her in my life. I can't imagine trying to do it alone. I try to tell her that there's no sense trying to "figure them out", as they seem to change whenever you think you know the pattern. And that if doctors can't figure them out, we shouldn't spend our energy doing it. The best way for us to deal with them is just that....just deal with them. I appreciate everything that she does, but I don't want her suffering as a result of my CHs. So, I hate to see her stressing. Though I know she only does because she cares, and doesn't want to see me suffer.

    Anyway....my question.

    As I've never used prednisone prior to this cycle. It does seem to have ended my cycle (and I realize it might be early to say that, as mentioned, they could come back now that I'm just on Verapamil).

    1) For those that had success with Prenisone, did you find any difference on when your next cycle would hit? ie: would the remission period be the same length as previous? Or did they come back sooner?

    2) Do people stay on the verapamil if the prednisone kills their cycle? I know the neurologist said to stay on, so, I will at least for this cycle. I don't want to take any chances. But am curious as this is a new treatment for me, and I also don't want to take any meds unecessarily.

    That's it for now. Done work for the day. Might fix up this message a bit or add more later. But mostly wanted to thank the powers that be and all of the contirbutors of this site; share my experience; and ask those two little questions.





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