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.

Joe,

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Come back with questions.

Peter.

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

Hi UKJoeK
Yes, that reminds me of myself somewhat.   I've had CH for 10 years now - diagnosis after 5.  At first they were pretty typical - twice a year for a few weeks at a time, but in more recent years my attacks have been completely random. 

I can have attacks for a couple of days, then nothing for several weeks, then shadows for a week, then a one off that comes out of no where. Any time of day, any time of year.  My physical activity, the weather, climate, alcohol - nothing seems to "marry up" permanently.  Today, a glass of wine could set it off, tomorrow I could drink the bottle with no ill effect.

The only thing thats consistant with CH is it inconsistancy. ;D
Luckily,my meds are on repeat prescription, so I no longer have to struggle for a doctors appointment, which where I live is harder than getting an audience with the queen.

Do you have sumatriptan injections - a million times better than the pills, and will kill off the worst CH in a few minutes.  I also use oxygen at home which prevents regular use of the drug.

From your user name I gather you are in the UK.  Where abouts?

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.

UKJoeK wrote on Jul 18^th, 2017 at 7:10am:

...will actually be down in Milford on Sea next week for a few days' holiday, so not too far from you I guess.

Meeting up with another ClusterHead is a really special experience.

Meeting up with Maz is an experience never to be forgotten.

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.

Hi Brian,  nice to know our meeting was as memorable for you as it was for us - for all the right reasons I hope   ::).
I still laugh when I remember our barbie.

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 All,

I've been trying the D3 regime but things aren't going well.

To recap briefly, a bout of shadows began for me about 9 weeks ago. It was the first significant CH activity for me in more than 10 years.  My last proper CH attack was in 2004.  Every few days something breaks through with some of the hallmarks of a CH attack but with only mild pain.  These “phantom" attacks could as long as 4 hours and would leave me with post-attack shadows.  I had 2 in 2 days about a week ago but they are generally 3-4 days apart.  For the rest of the time, I’m stuck with a variety of different pains and sensations centred deep behind my right and in my nose that never go away completely.  I have an appointment with a neuro in a week’s time.  I’ll be asking for a new diagnosis in view of my unorthodox symptoms, but for now I remain a CH sufferer.


Exactly 2 weeks ago I began to take 50,000IU of D3 with all the other co-nutrients.  At the time, I’d gone 3 days without an obvious “phantom” attack but my shadows were driving me mad.  A blood sample take the day before I started showed a serum concentration of approx 26mg/l.  Within 24 hours I thought I noticed a change and for the next few days I felt pretty good.  Symptoms didn’t vanish completely but seemed vastly reduced. My main problem became congestion of my right nostril which, in turn, seemed to cause a great deal of pain.

Last Friday – 8 days into the regime – I suffered my first phantom attack in almost 2 weeks.  It seemed mild even for one of my phantom attacks, but my shadows worsened again and I have begun to wake each morning with the nagging ache in my right eye that I remember from bouts when I was younger.  As of today, the shadows are worse than before I began the regime and the phantom attack that hit at lunchtime today is more like a real CH attack – certainly the worst I’ve had since this started and I'll hit it with imigran if it gets any worse.

Can this regime make things worse in some people?  It could just be a coincidence, of course, but the way that things are worsening for me so quickly does prompt the question.

Joe

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.

Some people have said that at first it doesn't help / makes it worse (possibly it would have done that any way) before it improves.

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.

Forgot to ask something....

Something that I can't help wondering about is the effect of the calcium.  Verapamil is a calcium channel blocker which I've always taken to mean that it blocks calcium from getting into the cells.

If you're taking a high level of calcium, wouldn't this naturally serve to worsen CH?  Can somebody far wiser than me (and there are many!) answer this?

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

If you're taking a high level of calcium, wouldn't this naturally serve to worsen CH?  Can somebody far wiser than me (and there are many!) answer this?

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).

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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.

Hi Mike,

Many thanks for this.  It's interesting reading and I'll review the regime guidelines again.

I was actually classed as chronic once because my shadow activity didn't go away for pretty much a whole year, but like you I'd almost forgotten the true pain of CH.  My last full CH attack was such a long time ago and I'd become used to shadow bouts with now attacks.   Sadly at the moment, I'm getting reminders of how bad it can be.  It started with shadows more than 2 months ago and they've gradually got worse and worse, and now I remember what CH really felt like. I still haven't had a full-blown attack but I'm convinced it'll happen, so I'm pretty freaked out.

I'm encouraged to hear all the positive feeback on here about D3 so I want to stick with it.

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

Hi Thierry,

Yes - I took 50,000 daily for the first 2 weeks but have now dropped to 10,000.  The first 3-5 days seems liked a huge improvement but then it got worse and seems to have got worse, day-by-day since. 

It could obviously be nothing to do with the D3.  It might not be having any effect yet.