Intro / My experience / and Questions

[Darren]

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.

 

Thanks!

 

 

[CHfather]

Darren, I wrote you a fairly long reply that was in effect eaten by the new system.  So I need to make this one short.

1. I can't answer your specific questions -- sorry!

2. Your O2 system is probably at far less than optimal efficiency.  At least 15 lpm is pretty critical, and most people get substantially better results with 25+ lpm.  This mask is better than the standard non-rebreather: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

 

[CHfather]

3. You might want to search for the phrase "red neck" using the search bar on the top right of the page.  You can find a thread where Batch talks about a different approach to using O2 that he says is very effective -- and Batch knows what he's talking about.

4. You should seriously consider the D3 regimen, which you can read about in the ClusterBuster Files section of the board.  It has been very effective as a preventive for many people.  Probably strongly preferable to staying on verapamil.

So glad to hear of your success so far and the great support you have!!!

[Darren]

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.

[Dallas Denny]

Hi Darren 

You can source all of the D3 co factors at pipingrock.com 

DD

[Darren]

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.

[CHfather]

I don't know what the price difference is, but I remember that Batch said he got all his D3 ingredients from Costco, the house brand, called Kirkland.

The thing about O2 flow rate is that you want enough flowing into the reservoir bag that you can use your most effective breathing technique and never have to wait for the bag to fill.  If 15 does that for you, you're fine, at least for now.  If it doesn't, you can buy a regulator pretty inexpensively online.  (But do check out that post from Batch, which I can't link you to because of some defect in the new message board.)

[Darren]

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. 

[CHfather]

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.

[Darren]

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. 

[Pebblesthecorgi]

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

[Darren]

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?

[Pebblesthecorgi]

Yup but I have heard there is a long lag time between start and harvest.  There are many primers for first time growers out there.  Do a search for BRF (brown rice flour ) and roger rabbit that will get you started.  Info here too I believe.  Sourcing your own meds is the best way to go IMHO because you know everything about what you would be taking.  So if you have the space, privacy and time its the best way to go for such alternatives.

[Dallas Denny]

Hi Darren 

Since you stated that pipingrock.com ships to Canada, your path to vitamin M cultivation is SOOOOO much easier than in the US!!!  I know a young lady in Canada who recently ordered a complete kit for around $125 including s&h.....I thought I had posted the info in a thread in "busting stories" but can't locate it so check your pm inbox and I'll send you the link 

DD

[john2000]

Darren,,,regarding O2,,,15LPM can't work properly with Cluster kit mask,,

When I breath using 15LPM using cluster mask,,,the bag doesn't inflate in time,,,I must wait,,,

When I breath at 25LPM it almost works ok,,,but still I have to wait

What works is 30LMP- 40LPM ,,,,

I have a regulator that goes up to 25LPM ,,,but also I have multyple bottle at home...So I have them connected using a splitter.

Each bottle is set to 15LMP or 20LMP,,,,you need to use clapms fir the hose or better hoses, because the pressure from 40LPM will disconnect from a fitting.

Also investing into a Demand valve would be a good idea,,,this way you dont need a cluster kit,,,,and it gives you unlimited O2, when you need it

Buying a used one from medical store or ebay is ok,,,

I start at 40LMP and then adfter 2-3 miin 25LMP is fone ,,then I continue at 15LPM,,,

If your bag was inflated constantly it must have been a mask that had holes open ,so you were breating in air ,,otherwise 15LPM could have never ever keep up with your breathing.

 

 

 

[Darren]

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!

[CHfather]

Thank you, Darren.  Follow-up reports are much appreciated!!!  I hope you are seeing the end of this cycle -- and I hope you will get on the D3.  That's a lot of prednisone.

Staying on the O2 for 5-10 minutes after you have aborted an attack can help stave off those next attacks.

 

[Darren]

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.