Hi all, I’m not really a newbie.  I used to be a regular visitor, perhaps as long as 10 years ago, which tells you how good the past 10 years have been.  It was tempting to believe CH was a thing of the past for me, but I never fully believed it if I’m honest.

I had typical CH initially. It began when I was 18 in 1992. My bouts came every spring for about 2 weeks and weren’t all that bad with hindsight.  I had an 18 month remission between 1996 and Oct 1997 and then a longer remission until August 1999, but the bouts were worse.  Diagnosis came in 2000, I think.  I haven’t had a ‘typical’ bout since then.   

My CH has been dominated with bouts of shadows.  I’ve had lots of these episodes, the first in summer 2000.  They don’t come at a specific time of year but they almost always begin before a holiday.  There’s clearly a connection.  Only once have I had a genuine attack during one of these bouts, and that was after a night drinking at altitude.  Since 2000, I’ve had perhaps as few as 5 real, full-on CH attacks and these have almost all come completely without warning.  I took verapamil in 2002, 2003 and 2004 after the attacks started and it apparently stopped them immediately.  I also took it continuously between 2004 and approx. 2008 but still got shadows.  I never once had an attack while taking verapamil but my bouts of shadows seemed almost continuous at times.

My last “real” CH attack was the one in 2004.  Anything that I’ve had since then has been too mild to warrant treatment and I’ve never been sure it’s a real attack.  Sometimes, during the bouts of shadows, things break through that feel like attacks but are very mild. Sometimes I get these “phantom” attacks completely out of the blue as well.  I’ve gradually become convinced that my CH has changed permanently and that the bouts of shadows are nothing to worry about.  The shadows have come many times since, but I cannot remember them really bothering me for ages now.

Unfortunately, a bout of shadows began around 4 weeks ago and has been worse than in the past.  The “phantom” attacks are getting stronger and more regular.  Is this where it all changes again?  I’ve gone more than 13 years without real attacks and almost 10 years without meds.  The differences this time?  I’ve used Sumatriptan pills sparingly over the past 18 months for headaches on my non-CH side, but haven’t used them for at least 2 months.  I’m not as fit as I normally am, but I’m no layabout either.  I also had to have an endoscopy a few weeks ago that involed a nasal-spray anaesthetic that was particularly harsh. 

When I was last active on here I’d never heard of Vit D3.  I obviously have some reading to do.  If my history reminds anybody of themselves, I’d be interested to hear from them.  I wish you all well and PFDAN.

Thanks Peter.  That's my lunchtime reading sorted for today.  I'll be in touch.

Nice to hear from you Maz.  I'm in Chelmsford but will actually be down in Milford on Sea next week for a few days' holiday, so not too far from you I guess.

I used Imigran injections once or twice. I also used the nasal sprays which worked for me.  They weren't as effective but they felt less "extreme", if you get what I mean. They're also more portable.  I carried around at least one nasal spray almost permanently for years!  But my condition has been totally unpredictable for ages now and (I say with with fingers tightly crossed) I still haven't felt the need to use a spray during this current episode and have never used anything for shadows.  I still hope it'll just pass like it has done so many times before.  I've never used oxygen, even though I had it in the house, ready.   Would think carefully about using verapamil again, purely because I felt it extended my bouts, even if the bouts were only shadows.

I'm very interested in your description of your own condition.  Are you with a neuro? (I used to visit Queen Sq but would have to be re-referred now).  There must be more and more sufferers seeking help now with CH becoming so much more publicised.  I wonder whether patterns like our own are being documented.

I've never tried the nasal spray, but I never leave the house without my injections. However, I don't use them as directed.  I pull them apart and just take half the dose, which works equally as well as the full dose.  Take a look at the  "imitrex tip" tab on the left of the screen. I do it all the time and find it's a much gentler way of using them - less bruises afterwards.  Those things go off like a blooming nail gun don't they.

I wouldn't be without the 02 either.  As long as you have a flow of at least 15 lts per minute and the correct mask, it can see off most shadows and mild attacks. 

I'm not with a neuro at the moment.  I was, ( finally found a good one after several years of banging my head against the wall)  untill a couple of years ago, but as I was happy with my treatment and meds I was discharged.

I live in Havant, about 6 miles north of Portsmouth.

LOL.  The camaraderie between fellow CH suffers has always been one of the nice things about the condition, if the word "nice" is allowed anywhere here.

I've met many sufferers before.  I was at the meeting in Rugby in 2001 that led to the creation of OUCH UK and have attended meetings in London and Birmingham.  But I've stayed away over recent years.  It feels selfish, but when CH has left me alone, all I've wanted to do is forget about it!

Hi Joe
If you have any kind of illness, your D3 will be gobbled up in fighting the infection and will leave you short for the CH.  If your nostril was blocked, could you have a slight cold coming on. If so you should increase your dose of D3 for a short while to compensate.

It can take several weeks for your D3 levels to get up to the required level to become pain free, so keep at it.

Thanks for your responses guys. I know it's early days so I'm going to stick with it.  It's just that it did seem to improve for a few days and now it's worse than ever.

I'm fairly sure I'm not ill at the moment.  The nasal blockage is a feature of my CH - or certainly the bouts of shadows that have become the norm for me.  Many times a day, my right nostril will block for a period of time - could be minutes, could be 8+ hours.  It causes pressure and pain.  And when it clears there's more pain.  It doesn't happen on the non-CH side and it doesn't happen when I'm not in a bout.

I'll stick with the regime and get new tests done in a couple fo weeks.  My loading phase is over so I'm dropping to 10,000IU daily.

UKJoeK wrote on Aug 26^th, 2017 at 1:00pm:


This is far from simple to answer as a lot isn't known about how the many different preventives we can use for CH really work, but what is obvious is that there are clearly multiple mechanisms in place which can disrupt CH.

Whilst verapamil, a calcium channel blocker, is the "go to" CH preventives, others include things like lithium, topamax, dekapote, amytriptylene, prednisione and more.

So not a complete answer I know.

Just focusing on verapamil / calcium channel blocking, what you can do is to make sure that any calcium taken is separated out from the verapamil by a few hours or more. Although after a while, the half life of verapamil in your body is about 8 hours, which is long enough to achieve a pretty much steady state if you take it 3 times a day spread out (with the half life varying between people and depending on multiple other factors too).

Make sure you're working off Batch's latest notes - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

And the end result can really be worth the effort. My last cycle was just a few days short of 11 months, so I'd probably gone from episodic to chronic, but D3 has kept CHs away for over 5 years. It means that I probably don't really remember the true pain of a CH, but I can't ever forget the impact on it and what it did to me, especially before I had an effective abortive and was forced to ride out the CH which typically lasted 45-75 minutes.

So keep working on it and I hope you'll soon be finding success.

Hey UKjoeK
Did you try the fast track way that Batch has designed for getting your D3 levels up really quick?
That is: Take 600000iu D3 over the first 2 weeks of the regimen, as well as the rest of the regimen.

All the best