Hi all, apologies for the drama ahead (I know I am a drama queen, but the situation seems to merit it)

Name is Javi, 42, from Spain.
I am  not exactly a newbie, I first registered in this forum about 15 years ago, and it was actually from the survey in clusterheadaches.com that I realized that i had CH.

Also through this message board I started using kudzu, which has worked pretty well for me.

At some point after that I forgot my credentials or my account was removed due to inactivity, I am not sure.

In 2009 I registered again, i was only using kudzu and was pretty happy in general but I had realized that visiting the toilet was able to stop a hit, so I shared that story here and left again.

I am a lucky episodic, by this I mean that I normally get a four to six-week long cycle every couple of years.

My last cycle took place in jan-feb 2014, which is almost 2.5 years ago, so perhaps I am growing out of CH. I think I may be starting a cycle now, I am not sure.

Also my hits are not as severe as other people´s (i´d say kip 7).

Yes in that respect I consider myself lucky.

So guilty as charged: I am a selfish hypocritical individual who come here when in need and leave when pain free.

But now the pain is back, and I am scared.

I have two kids, 4 and 6. For the last month my eldest has been complaining of pain centered around his right eye. He complains for a short time, say 5 minutes. I ask him "does it hurt very bad, sweetie" and he goes, yes... "a bit".

I give him a little gel mask that I keep in the freezer, and this seems to ease the pain.

I have not noticed eye redness or swelling, I have noticed a blue vein towards the right eyebrow that seems to stick out a bit more than usual.

I have just started keeping a logbook.

As tough as it is to face it, my son might, perhaps, have CH.

I have my first recollection of a possible attack at age 24 and I got my first real cluster (several daily attacks) at age 26 I think. I only discovered it was CH at age 29.

My son is only six... will he not even be allowed a pain free childhood?

Will his childhood memories be forever tainted by pain and anxiety?

Will his academic performance be impaired by this?

Will he need a bedside oxigen tank, will his little friends think of him as the "kid with problems" ?

My dear son... why you?  :'( :'(

Well, on the plus side I will be there to help you, at least somebody will understand your pain and you will not, for as long as I live, be alone.

I believe you, Javi. He will never be alone.

Javi,

Welcome back.

You need to get your son to a headache specialist as soon as you can, if only to eliminate a CH diagnosis.

Does he wear glasses? This might be solved by a good optician.

Get it checked out and then you will know what you're dealing with. Statistically, it's very I likely to be CH.

Good luck and keep us posted.

Peter.

Peter510 wrote on Apr 29^th, 2016 at 5:01am:

... Statistically, it's very I likely to be CH.

Hey Javi, Peter510 is a good friend to us all and I truly believe he meant to say, rightly, "Statistically it's very UN-likely to be CH".

Yes, thanks a lot Peter and Brian.

Yes, I am sure Peter meant "unlikely" and I agree, statistically it is unlikely but the signs are there.

In any case I may have overreacted, even if it turns out to be CH there are more tools and knowlegde today that there ever were when we first faced this condition.

I will keep you posted. Thanks again!

Javi,

I'm so very sorry. I did mean "unlikely".

Brian, thanks for the heads up.

Peter.

Also try to get his teeth checked out and maybe visit and ENT, I am diagnosed with CH but I was checked for everything else that could possibly cause headaches as a child (was only diagnosed with CH 10 years later).

Hola Javi,

Kids get CH...  We have one who was diagnosed with CH at age 5 who likely had them for more than a year.

The prudent action would be to take your son to his pediatrician for a checkup and ask for the 25(OH)D lab test.  25(OH)D is the first metabolite of vitamin D3 that's used ot measure its status.  The normal reference range is 70 to 250 nmol/L, (30 to 100 ng/mL).

If your son's 25(OH)D serum concentration is around 70 nmol/L or less, you'll need to start him on vitamin D3 at 100 IU per Kg of body weight.  He'll also need a good children's multivitamin/mineral with magnesium as well.

I've had my entire family taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3.  That includes my brother, two sisters, niece, nephew, wife, 3 kids, their spouses and seven grand kids.  The kids get 100 IU of vitamin D3 per Kg of body weight a day.

The youngest, Fred, a.k.a., Winefred has been on this regimen since conception.  She's 21 months old now, has a reactive armor immune system (never been sick) and is developing physically and mentally at an amazing pace...  Her pediatrician just looks at her and smiles in amazement...  He's become an advocate of vitamin D3 supplements for kids.

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

Fred speaks English and German pronouncing the names of animals in her animal book in English and Hochdeutch. 

Fred also has a photographic memory.  My daughter introduced her to 12 people at lunch she had never met or seen before...  That evening at dinner, she pointed out each of the 12 without delay when my daughter asked her "Where is _"?

Bottom line...  vitamin D3 is very safe and very healthy for kids too.

Take care and please keep us posted.

V/R, Batch

You guys are amazing!

Batch, I will look at the D3 regime and keep you posted. It seems to make sense... I used to live in the UK and my CH was way worse back then, then I relocated to sunny south of Spain and it did improve in frequency and severity, although it did not completely dissapear. I thought I was growing out of CHs, but perhaps it is just that I am getting more sunlinght.

My kids spend a fair bit of time playing outdoors (although with sun filter applied to their exposed skin between april and september)

This is something I definitely need to have looked at.

Anyway, thanks a lot, you guys are making me feel  better.

Quick update:

Good news first: My son has not complained again about any sort of pain near his eye. Not sure what this means for the future, but i will just be happy about it now.

Bad news second: As I was suspecting I have started a pretty bad cycle, after 2.5 years of sweet oblivion the hits are back.

I have started with Vitamin D3 (10.000 units I also get a fair bit of sunlight), magnesium, Omega-3,  Kudzu and melatonine.

The cycle started about 2 weeks ago and was being "gentle" until last night when I ended up running in the street at 3 am.  :'(

Until yesterday the cycle had allowed me some "days off", perhaps due to Batch´s regime.

I am bracing myself for tonight, I will keep you posted.

Javi,

Have you had a recent 25(OH)D lab test?

A short 5 day vitamin D3 loading schedule might help...

Take care and please keep us posted.

V/R, Batch

Hey Javi,

what Batch is saying is for you to take 50000iu D3/day for 5 days.
That will bring on a sharp and fast rise in D3 levels, probably to a therapeutic level.
I've been on the D3 regimen for a few years now. it's working great but i still do loading schedules in spring when i can feel that i'm starting a cycle, i'm getting shadows at the moment and am being awakened at night with kip 3-4 but that's all. Nothing compare to 3 to 4 months of kip 8-10 nightly before i started Batch's D3 regimen.

All the best

Thanks a lot Batch and Thierry for your messages.
I have upped the dose to 20.000 for now and some sunlight.

Plus multivitamins, magnesium and omega3 and 3 mg of melatonin before bedtime.

Will keep you posted.

Hi Javi

  I've been gone for a while myself . . .  and very happy to say it's been a PF absence . . . . due to the D3 regimen.

  Chronic for eleven years, after 13 months my wife found this site/family and I finally had a "name-for-the-pain" and a direction to go to abort and reduce the frequency/intensity of the attacks . . . . and the D3 regimen did the trick.

  Thankfully, I'm not back because "HEs" back, but because I felt the need to get back in the boat and pick up my oar.

  Be Safe,

  PFDANs,

    Richard

Update 6th of July.

My cycle seems to have finished after 6 weeks, I have experienced neither pain nor "shadows" for the last 2 weeks now, so chances are this cycle is over.

This has been a strance cycle. It was unusual for me to have quite a few nighttime attacks. Pain was sever severe that I ended up visiting ER to breath oxigen, which I did not need to do in previous cycles. On the other hand I enjoyed a surprisingly high number of pain free days during the cycle.

I am not sure what to make of the D3 regime. It appers to have helped with the frequency of the hits, I had quite a lot of pain free days (I was being hit perhaps 1 out of 3 days). 

I might have not done the regime properly.  I started with 10000 ui daily for a week , Omega 3 and supplements (including magnesium) and Melatonin, then I upped the dose to 20.000 for a week, then kept it at 10.000 until the cycle appeared to have ended.

Now I doing 5000 ui per day as maintenance and will probably go down to 10.000 a week in the near future.


Regarding my son, he has not complained about any sort of pain again... I AM SO HAPPY!

Thanks to all that replied to my post, thanks to all that sent me PMs, thanks to all for being there and showing support.

Big thanks to the CH forum and community, you guys are priceless!

Special thanks of course to Batch. You, sir, are a star!

Hey Javi,

Thanks for the kind words... Glad to hear your son is PF...

Regarding the vitamin D3 dose... Just remember to ramp back up to 10,000 IU/day a couple months prior to the start of your next expected episodic cycle..

Take care,

V/R, Batch