Hi All,

I haven't been here in many years.  So long, in fact, I have long since forgotten my old user name and whatever email address I was using at the time.  No matter, I'll just start over.

Not sure when I started having CHs, but late teens/early 20's is a good guess (misdiagnosed for years).  I have always been prone to headaches, including migraines, at an early age.  Skull fractured as an infant due to a car crash (not sure if that has anything to do with anything, but there you go).  At least one, if not more, concussions through childhood (I was a fearless kid).  Once I started having known clusters, the series would last 8 weeks, starting in the late Winter (Feb every time) and on a three-year cycle, like clockwork.  Currently, even if I do not enter into a CH 8-week hell, I will have shadows in Feb/March and I have a significant increase in the occurrence of other headaches.  As stated above, I've been CH-free for seven years.  Not sure why, but I'll toss this out there for what it's worth (probably nothing, but you never know).

I was always active (before, after, during).  I used to smoke, but do not now and really cut back around the time I stopped having CHs.  That seems the most significant aspect, but who knows.  Last time I was on the verge of entering into a CH series (shadows, frequency and intensity increasing quickly -Which has always signaled the start of a series for me), I started taking Ritalin.  I did not begin having CHs, but attributing that to Ritalin would be fool-hearty. I know there's some discussion here about Ritalin and there is no scientifically significant study on the use of Ritalin and CH, but, again, just tossing that out there.  Doubt it made the difference, but who really knows. I have not been taking Ritalin since, yet the CHs have not returned and that probably tells the tale about Ritalin right there (it was likely just a coincidence).  I read a study that suggested a possible cause of CH may be the decrease in production of Testosterone.  Humm, if that's the case why did I start having CHs when I was likely at the top of my game (testosterone production-speaking)?  I do lift weights which, you may know, reportedly increases T production.  My diet has gone from eating junk food to treating my body as a temple, back and forth and everything in between.  No difference in CH occurrence based on my diet that I can tell.  Regular Coke and then a Diet Coke junky (yea, I know, I know).  Went off DC when I entered into one CH series and no effect.  I do not drink coffee, but based on what I've read here, I'm willing to start if ever needed.  Alcohol is a definite trigger for me.  I find it best to avoid alcohol during February/March just in case (beer & wine is all I generally drink when I do, and not that often, so no biggie to take it out of the equation).  Work has gone from active snowboard instructor, bartender, to college and grad student, to professional desk jockey.  No difference in CH occurrence based on job.  Generally hit the sack at 10PM and rise at 6AM, while waking up at least once around 2-3AM.  I snore like a busted chainsaw and have untreated sleep apnea.  I do not know why I've been CH-free for the past seven years and certainly wish I knew why, but certainly grateful.  My 12yo daughter is prone to have significant headaches, so, sadly, looks like I passed that on to her.  The Boy does not have headaches, so looks like he's lucky.  Perhaps there's something in here that someone can use to his/her benefit.  Again, the only thing that jumps out at me is quitting smoking.

I should add, 46yo, I do not take any meds (legal or otherwise).

Hi Offroad

CH can be a tricky bugger; I got my first dance with the devil just before I turned 50 now 63 that lasted 12 weeks & went away for 5 years before it came back & I went chronic & been that way since.

Like you I've had life style changes but nothing stands out as a winner.

Lets hope your's stays away forever.

Cheers
Barry

ORD,

Before you start taking any more invasive medications to control you CH...  do yourself and your daughter a favor and both of you see the family doctor for a test of your serum concentration of 25-Hydroxyvitamin D...  It's also known as 25(OH)D, the serum level metabolite of vitamin D3.

Both you and your daughter are likely vitamin D3 deficient...  and there's a high probability being deficient in vitamin D3 is contributing to your cluster headaches.

The normal reference range for a 25(OH)D lab test is 30-100 ng/mL...  Having said that we've seen 25(OH)D results come back from CH'ers with active CH as high as 42 ng/mL.

The really exciting information comes from a thread here on CH.com where CH'ers have posted their experience using the anti-inflammatory regimen with 10,000 IU/day vitamin D3. You'll find it at the following link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Start at the last few pages then go back to the beginning posts...

The running tally of comments from CH'ers who have tried this regimen follows:  70 our of 100 CH'ers who try this regimen experience a significant reduction in the frequency and severity of their CH or they go pain free.  Typical response times are less than two weeks with some going pain free in as little as 12-24 hours while others have taken as long as 30 days. 

The response time appears to depend on how deficient they are as measured by the 25(OH)D lab test.

CH'ers who had a favorable response to this regimen and then had the lab test for 25(OH)D have all come back with concentrations ≥60 ng/ml, (150 nmol/L). Some CH'ers didn't have a favorable response until their 25(OH)D reached 100 ng/mL, 250 nmol/L.

This is a healthy regimen even if you didn't have CH and a 5 month supply of the supplements needed costs $35 at Costco or 20 cents a day as shown below...

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Two of each a day and you'll be good to go...

Talk with your doctor when you get the results back from your 25(OH)D lab tests...  If the results come back < 42 ng/mL...  tell your doctor you want to try this regimen...

Take care and please keep us posted.

V/R, Batch

I am also 7 years with no CH.  What changed?  I got older.

Thanks Batch!  B3, etc., on my list.

Bob, I remember reading, many years ago, that some thought a person might grow out of CHs.  Logic would dictate that is a possibility as some people grow into them.  Who can say?  We're very lucky that we've been CH-free for seven years, that's for certain.

12 years pf for me so far. Age 63. I sure hope that I have outgrown them. Goadsby says no but I told him he doesn't know everything. :)

ORD,

I went off the road and misread your initial post.  I thought your CH had returned...  The suggestion still stands for you and your daughter to see your doctor and ask for the 25(OH)D lab test. 

The link between cluster headache and a vitamin D3 deficiency has gone past the theory stage.  There is sufficient empirical evidence the link exists for at least 70% of the CH'ers who reported taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3.  There have also been several reports that CH will return if vitamin D3 therapy is discontinued.  I'm one of them...

Having said that, there remain unanswered questions...  Why is vitamin D3 therapy only effective for 70% of the CH'ers who use it to prevent their CH?   Is it possible there are types of cluster headache that are not affected vitamin D3, or did some of these CH'ers who didn't respond give up and stop taking this regimen too soon? 

We just don't know what would have happened if they had continued this regimen a little longer.  There have been a few CH'ers who took over 30 days to have a favorable response and their 25(OH)D levels were well over 90 ng/mL.  One took nearly 3 months to achieve an acceptable quality of life on the anti-inflammatory regimen and he needed to up his vitamin D3 dose to 15,000 IU/day.

All that aside, the odds still remain high that your daughter is vitamin D3 deficient.

As you have remained pain free for 7 years, your 25(OH)D concentration remains an unanswered question.  Knowing your actual level would be interesting and possibly helpful in further characterizing the relationship between CH and vitamin D3. 

I'm 67 and although vitamin D3 keeps me pain free... I still have CH.  As I indicated earlier, all I need to do is stop taking vitamin D3 and I come out of remission.

Take care,

V/R, Batch

Well it's been six years since I started this thread.  Zero lifestyle changes.  Nothing new to report that might help others.  Every Spring I get some shadows, but miraculously, still no clusters.  When I get a shadow, I breathe deep and rapidly in through my nose and out my mouth in hopes of upping my O2.  Seems to help as the shadows tend to go away when I do that.  Thankfully, cluster-free for thirteen years now.  That's all I've got.  Hope you all are doing well.

offroaddad wrote on Jun 26^th, 2018 at 5:58pm:

Thankfully, cluster-free for thirteen years now.

Thanks,  OffroadDad,  because this is exactly the sort of news that gives every other CHead hope.

May it continue forever,

Brian down under.

Just what Brian said. We get people who are having a really tough time with CH and seem to be on the edge of losing hope. So posts like this where people go pain free (or close to it) from years is a real balance check, saying there is hope and it can happen to them too.