It is along story but since 1974 I suffered from regular 'seasonal' and other cluster headaches.  I did everything to try to cure them and alleviate them.  I went to a seminar in London for sufferers, saw a 'specialist' etc etc..  Life was a misery at times.

Some years ago I decided to take 75mg Asprin for the simple reason there was publicity saying it was a good thing to do for one's health.  Two or three years later I stopped due to a spell of adverse publicity as there was no real need for my taking Asprin and it was not prescribed or anything. 

Within 4 months I had a cluster headache session which until then I had decided I must have 'grown out of', not having had one for some time. 

Then I heard of a friend who had gone to her doctor about 'normal' headaches was told she had sticky blood and should take Asprin.  I had never heard of sticky blood and even now haven't looked it up but it dawned on me while thinking about that, that my lack of headaches co-incided with the couple of years or more of taking Asprin. 

I resumed daily Asprin.

So for the last three years or so I have been back on Asprin and had no more cluster headches since that one event when I had stopped Asprin.  No more methysergide! 

So from living in dread on and off for many years I am finally able to feel free of the debilitating killer discomfort.  Life is wonderful and normal.  It may be a fluke but something has changed my life and as far as I can tell, for me, it has been my daily 75mg Asprin.

I probably won't look on here again but I am so pleased that after so many years of intense suffering that something so simple seems to have worked for me and I felt it worth the mention.  If it is a fluke, so be it.

G'day Pennine, and it's sensational news that you were able to deal with your Cluster Headaches so effectively with such a simple and ingenious cure.

Sufferers everywhere are in your debt and we thank you sincerely for taking the time to help us.

It just seems a shame you won't be checking in a little more often, if only to pick up the praise and kudos you so richly deserve.

Travel safely, friend, and may you be headache-free for ever.

Glad to hear you're living a pain free life, Lord knows it's what everyone here is trying for. I'd love to hear a little more of your symptomology and treatment history. I've seen a lot of weird things suggested here that turned into mainline treatments, Mushrooms, Oxygen, Energy Drinks, Vitamins, I don't dismiss anything out of hand, but would certainly appreciate a little more in the way of details to give us a better idea of how this treatment worked.

Hoping your pain free period lasts a lifetime.

Joe

AussieBrian wrote on Aug 10^th, 2014 at 7:19am:

G'day Pennine, and it's sensational news that you were able to deal with your Cluster Headaches so effectively with such a simple and ingenious cure. Sufferers everywhere are in your debt and we thank you sincerely for taking the time to help us. It just seems a shame you won't be checking in a little more often, if only to pick up the praise and kudos you so richly deserve. Travel safely, friend, and may you be headache-free for ever.

Droll........Very droll. [smiley=applause.gif]

             Potter

Hello,

Thank you for the interest in my post regarding Asprin.  I know it can help to learn a bit about how fellow suffers cope etc.  I don’t want to inflict my experiences of cluster headaches on anyone else but stimulated by the generous comment to my original post and that of Guiseppi I will add a synopsis of my saga for those who have the stamina to endure it.

So a bit of history.

I had a cartilage operation in 1974 and the recovery proposed then was to loaf about for six to seven weeks with my leg in a cocoon of cotton wool and bandaging.  I had it done in the summer hoping for a nice few weeks off work and it was under BUPA medical insurance so I had a private room.  I sunk a few cans of lager in the toilet cistern to chill and figured out how I would get to them while supposedly confined to the bed.  In the event I didn’t feel like them at all and when I got home reclining on a chaise longue I would get a pronounced desire to doze off and when I woke began to get this dreadful one sided headache that seemed to be connected with the side of my neck.  I had never had anything like it before.  I put it down to reclining with my chin on my chest.

As time went on I kept getting these batches of headaches over a period of weeks and tried to carry on regardless.  However visits to the doctor and a scan at the hospital gave no enlightenment as to what was wrong.  In fact on one visit to the doctor he told me, ‘It can’t be anything serious or you would be dead by now.’  No one mentioned cluster headaches.  I also found that I often felt extremely drowsy and desperate to doze off which then meant I would wake up and immediately get a bad head.  I remember struggling through a presentation at work about a specific computer program being proposed to me and trying to stay awake and also pretend I was normal when the pain hit and my left eye went reddish and wet etc.  You know how it is.  All you want to do is go away and hide and nurse yourself while writhing on the floor.

In, July 1985, I was driving along and switched on the radio.  I landed on programme called Medicine Today.  A Dr Clifford Rose was speaking and describing my symptoms exactly.  He said they were cluster headaches and spoke of work being done which didn’t really seem to offer much except maybe some palliative medication and it related to his article in the British Medical Journal, Vol 290, p1625

Right, well, I was pretty desperate for some of that so back to the doctor to tell him what was wrong with me.  He looked it up.  He prescribed methysergide or Deseril, which I have to say made an enormous difference except that being averse to medication I tended to try to struggle on rather than take it if I could, and by then it was too late.  I learnt to use it and I must say it worked for me.  Alternative things were recommended like Verapamil and other stuff but I really didn’t go for it and stuck with my Deseril.  I was referred to a specialist neurologist a couple of times, who seemed to have heard of cluster headaches, because there seems to be some protocol about the number of repeat prescriptions one could have before being checked out.  This checking out was only ever a face to face discussion.  ‘If it is working OK then carry on lad,’ sort of thing.

The trip I made to London in 1999 was a seminar for the unfortunates who had cluster headaches and was organized by ‘Migraine Action’, a body to which I subscribed at the time.  I was surprised how many sufferers were there, all grasping at straws I suppose.  Some medical guys, two doctors and a professor were speakers.  One or two afflicted gave an account of the terrible torment they suffered.  I tried to make the connection between the onset of my cluster headaches and my knee operation but it was summarily dismissed as totally inconsequential.  So I actually only learnt that there were others in a greater state of misery than I.  I am not sure what the three medical gentlemen got from it except that there are probably more out there than you think who suffer the death of thousand cuts at regular periods, although apart from that trip I have never met another fellow traveller. The fact is I never told anyone unless I had absolutely no choice outside the family, since I couldn’t hide it at home forever, as I felt it something I had to keep to myself.   Somehow I had to try to hide it.

Deseril was my source of prevention of pain. At the onset I often thought that I really can’t believe this is happening to me again.   I assumed I was set up like this for the rest of my life.  I could go into detail of all the false assumptions or otherwise, of what might cause an event to start and when they occurred etc., but everyone has their own personal painful experience to analyse and dwell on.  It is sufficient to know what cluster headaches mean as the sufferer knows intimately what their versions are like.   

As I mentioned above I kept reading in the papers about the health benefits of Asprin.  I have no health problems but I went to the doctor during the course of one of my six to eight weeks of headaches to get more Deseril prescribed and I had my blood pressure taken.  It was high.  Well I don’t have high blood pressure and refused a suggestion of medication for it, so it was agreed I would go back in a couple of weeks or so.  I went to Boots and bought a blood pressure kit and took a series of three readings several times a day until my next visit.  I provided an Excel spreadsheet analysis with a chart showing high, low, average, Uncle Tom Cobley and All, and he agreed I did not have high blood pressure.  On the infrequent visits I make to the health centre I provide a page of readings for them because they have accepted I suffer from white coat syndrome.  I don’t feel stressed but it does read higher at those visits.  (How many people are on medication they maybe didn't need due to one bad reading at the doctor’s.  Hardly statistically correct to base lifetime medication on one reading).

Anyway just in case, despite not having high blood pressure and seeing all the enthusiasm for people to take Asprin at that time, probably seven years or so ago now, I decided to make sure I didn’t have high blood pressure another time and take it.  (I don’t remember exactly when as I have reached a period in life where time flies exponentially),   Originally I was breaking a standard Asprin in half but then found out about the 75mg pills.

So a couple of years or so down the line there was one of those reversals of advice that happen all the time about anything consumable as articles in the newspaper spoke of the downside of Asprin and not taking it unless you really had it prescribed.  So I stopped, probably around the summertime.

I used to get CHs in ‘Spring’ and ‘Autumn’ usually without fail and the odd ones would fill in now and then.  I made no connection with Asprin at that point despite having gone a couple of years or so without any CH’s. Actually I wondered if I had grown out of them.  I mentioned to my wife they seemed to have stopped.  Fatal to do things like that!  Come November I was hit with a bout.  Deseril save me!

Some time later I was visiting a friend who told me of a mutual friend who is always ailing something who had been getting very bad heads.  She told me the doctor had said she had sticky blood.  I had never heard of this so driving home in the car I was thinking of sticky blood and wondering if there was such a thing.  Then I had my eureka moment.   I only got a headache spell after I stopped using Asprin and had been free of them while I was taking it regularly every morning with my toast and marmalade.

It was too much to hope, at that time, that it was no more than coincidence as I once went for just over a year without one for some unexplained reason earlier in my history.  So I have now been back on Asprin for about three years. So far so good.

I know I am not cured.  I suppose it is like being an alcoholic. You are never cured and will always be one.  As far I can tell it is Asprin that has helped me be normal as there is nothing else in my life that has changed enough to make a difference and there is at least some circumstantial evidence.  In fact whilst I never normally drink alcohol I am not averse to a lager again now if there is little else available and happily consume coffee where I had stopped that, as both these I had decided early on could stimulate the onset of agony.

I am not trying to suggest to anyone that I have found a cure, only that something has changed my life and as far as I can tell it is Asprin. 

There must be many sufferers out there who are prescribed Asprin for other reasons so it is clearly not a universal panacea.  But I am hopeful that I can carry on life like this whatever the reason and not get that dreaded pain. 

So I know how you feel if you suffer Cluster Headaches and I wish you well and hope you find a way to alleviate them forever.  Thank you for being interested enough to read my posts and now I again want to forget I ever suffered from cluster headaches.

Best wishes to all.

Bayer ex machina!

Hi Pennine,
No your not cured as their is no cure for CHs, but it seems
you've cottoned on to a preventative measure that works
for you, and I thankyou for sharing it with us. I was a
Spring/Autumn sufferer for 43yrs, but now CH free after
starting the vitamin D3 regime, you can find all the
information about it here, just in case the aspirin stop working for you. I wish you good luck and pain free days.

Cheers, Hoppy. 

I take asprin regularly for other small aches and pains, including ordinary headaches, but it has never had any effect on CH. It was the first thing I turned to when I had my very first CH, and took them by the bucket load during the first desperate years before I got a diagnosis, along with every other pill and potion I could find.

My neorologist told me that there are NO pain killers which will help CH, because it is a primary pain. Not even morphine.

I see two possibilities here.  1) as CH is caused by a dilated blood vessel which presses against the trigeminal nerve, maybe the asprin had an effect on your blood, which in turn then affected your blood vessels.   2) most likely you had a good long remission which coincided with your use of asprin. Remission periods can change from a few weeks to years, and people often think they have found a cure, but CH always comes back.

I hope for your sake my first suggestion is the right one and you have indeed found something simple that prevents your CH, but I won't be rushing out to stock up on them.

I very much regret making the posts above. 

A few days after posting I started again!  OK so you told me so! 

The worst thing for me is that I now discover Deseril/methysergide, which has always worked brilliantly for me, is now withdrawn and unobtainable. 

I have just been prescribed Pizotifen by a local GP since a repeat prescription of Deseril failed, but am not very happy.  So it looks as though I will have to start the quest all over again to try to find something that works.   >:(

I'm so sorry you had to find your way back to us.

I was prescribed pizotifen back in the early days, but I refused to take it as the potential side effects were just too awful - weight gain being one of them. After checking on the internet I found it could be up to 4 stone ( 56 pounds).

Since then I have found what is the best treatment for me, and seems to be favourite on these boards.

Sumatriptan auto injections are fantastic. The pills and nasal spray take too long to get into your system to be of much help, so go for the injections. They will abort a big one in a few minutes.

Pure oxygen delivered at a minimum of 15 litres per minute with a non-rebreather mask will do the same. But the correct flow rate and mask are both vital for it to work.

Both of these are vasoconstricters - shrinking the offending blood vessel back to it's normal size, thus taking pressure off the nerve, which is what causes the pain. They are also the most commonly prescribed because they are the most effective. Your doctor can prescribe the oxygen.

Verapamil is a very effective preventative for most people, as is Batch's vitamin D3 regime, which has had fantastic results for 80% of those who try it. Again, it has to be done right so send Batch a PM. He's our hero, and will tell you all you need to know.

There is no cure for CH, but all of the above is probably the best advice any one here will give you. Follow this advice and you will get your life back. CH will never go away (apart from remission periods), but you can manage and control the pain.

No one here will say "I told you so". We've all thought / hoped / prayed we had the answer. I've got the T-shirt. I've learned to live with my CH. It pisses me off but I know I have to live with it for the rest of my life, so I control it when it comes ( I won't let it control me) and enjoy my pain free remission times.

Stick around - if nothing else, you'll discover a whole world full of new friends who really do understand.
Maz.

Thank you Maz for your kind response.  I really thought I had 'grown out' of CH and had found a solution since I had gone so long with no CHs!   ::)

Anyway I looked up Pizotifen and was unhappy to see what I had been prescribed.  Looking briefly at various comments about it, people seem to suffer significant weight gain. (significant in my eyes anyway).    I have no confidence that this particular GP has a clue about CH but there is someone in the practice who is more appropriate that I will see in due course.

In the meantime I have a enough Deseril to see me through this cycle as I always kept one batch in hand for the next time.  I also have some Verapamil I was once prescribed but never tried.  Since you reminded me of it I will give it a go instead of the Pizotifen.

Thank you again for responding.  Deseril was certainly a wonderful preventative for me with no adverse effects and I could have total confidence in it so it is a bit of a worry it has gone.  :)

I also saw this on the web.  Maybe it has already been mentioned on here.  I am not allowed to post the link so the rules say - gizmag.com/cluster-headache-ati-neurostimulator/33422/  But you will get it without the 'w's  I hope it becomes generally available if it works as well as suggested but I wonder why the handset needs to be so big.

Bear in mind, verapamil can take a couple of weeks to become effective, so it may be a good idea to get your prescription refilled so you have plenty. I'm not sure as I don't take it myself, but I think verapamil has to be taken permanently as it's a preventative. Some one else will come along and tell you if I'm wrong about that.

I don't use a preventative as I feel I have it under control with the abortives I have. I have the oxygen set up at home, and take the injections out with me, in my bag. I never leave home without them. I prefer not to use drugs every day of my life, when I can get away with just using them when I need to. And of course, oxygen is totally drug free.

You are right that your GP probably has little experience with CH. Very few have. Even most neurologists know less about it than you would expect, unless they are headache specialists. And this seems to be the case all around the world. My own GP gave me everything from paracetamol to epileptic medicine. In the end, I learned everything I needed to know from this site and had to ASK for it. She admits that I know more about the condition than she does, and is very open minded to my requests.

As I said, Stick around. You'll learn a lot here.Let us know how you get on.
Maz.

maz wrote on Aug 29^th, 2014 at 5:30pm:

Bear in mind, verapamil can take a couple of weeks to become effective, so it may be a good idea to get your prescription refilled so you have plenty. I'm not sure as I don't take it myself, but I think verapamil has to be taken permanently as it's a preventative.

If you're episodic with well spaced but unpredictable cycles then the standard approach is to wait until you start a cycle, then to start a prednisione taper to act as a short term preventive and at the same time to start on the verapamil, which will become effective about the time the prednisione has tapered off. Then to stay on it until the end of the cycle before starting to taper off the verapamil.

For people who have predictable start dates to their cycles, e.g. every year at the start of March, then they can skip the prednisione and start on the verapamil a few weeks earlier so that it is at an effective level for the start of the cycle.

If someone has short frequent cycles or is chronic then the best option is often to just stay on the verapamil all year round.

With verapamil it typically takes 7-10 days to reach an effective level from starting it or changing doses, so don't change things more rapidly or you'll not be able to tell what is working. Plus it can impact the PR interval on an ECG, so get an ECG done every few months. If it is impacted then stopping the verapamil should sort it out, but you'll then need to jump to a different preventive.

Another option is using vitamin D3 which has worked wonderfully well for me and about 80% of people trying it.

I've been CH pain free for over 900 days using it and yesterday I returned my oxygen cylinders, although I've still got my sumatriptan injections (imitrex) which I use for my migraines so I've still got an abortive.

verapimil is a medicine for high blood pressure, so normal BP is a contraindication for it's use. Anecdotally, it can mess up your system if you have  normal pressure, and take it for CH. 

nolanance wrote on Aug 31^st, 2014 at 12:27pm:

verapimil is a medicine for high blood pressure, so normal BP is a contraindication for it's use. Anecdotally, it can mess up your system if you have  normal pressure, and take it for CH.

Fortunately, IGNORANCE, even at this stunning level, IS curable...one simply needs to search "Bob Johnson/(verapamil)" as he has tirelessly provided the SCIENTIFIC...as opposed to 'anecdotal" evidence for the efficacy of verapamil in the treatment of CH......

I suspect a ch resident cowboy would have responded much more succinctly.... with 2 words...or is it 1? Same-same it is.

Best

Jon

nolanance wrote on Aug 31^st, 2014 at 12:27pm:

verapimil is a medicine for high blood pressure, so normal BP is a contraindication for it's use. Anecdotally, it can mess up your system if you have  normal pressure, and take it for CH.

Not sure about your observations. People with active CH seem to be able to tolerate very large doses of verapamil, well in excess of what is used for blood pressure treatment without it causing their blood pressure to plummet.

I know for my own use that blood pressure pretty much remained constant at 480mg a day.

Agree with Mike, reply 15.

Veap. has a long track record for effectiveness with Cluster and for safety.

Interesting observations thank you. 

The Verapamil I was prescribed was - One tablet to be taken three times a day = 40mg.  So I guess they won't have much effect! 

I also note I wrote on the box (as the prescription wasn't recent and I don't know where I got the info) that 480mg/day is fine and one can even go to 960 for long periods.  If that is so I wonder why the GP prescribed so little.

I think Mike has it for me -
'If you're episodic with well spaced but unpredictable cycles'

Pennine wrote on Sep 6^th, 2014 at 3:29pm:

The Verapamil I was prescribed was - One tablet to be taken three times a day = 40mg.  So I guess they won't have much effect!  I also note I wrote on the box (as the prescription wasn't recent and I don't know where I got the info) that 480mg/day is fine and one can even go to 960 for long periods.  If that is so I wonder why the GP prescribed so little.

Most likely with a total dose of 120mg a day you'll not see much benefit, but it is possible that the dose was determined by your GP in view of your personal medical history.

However it is more likely that your GP doesn't have too great an understanding of how to treat CH. You really need to work with a headache specialist to get someone who has the skills and experience to treat CH correctly who can then give instructions to your GP on things like repeat prescriptions.

First mistake the OP made was using the C word!!

WOW

Hi tangerine and welcome.

Your post doesn't say much, but just in case you were in any doubt, the C word that koctail was refering to is "cure". It's not in our CH vocabulary.

Hello again,

Just an update.
After a few years of no CHs I got confident I had grown out of them.  I was daft enough to stick my neck out on here to post on the subject only to have a recurrence shortly afterwards. 

However for some reason this recurrence was very short lived and never really got going. It lasted only two or three weeks and never really developed into the normal sequence of events.  My little stock of methysergide pills - Deseril - ensured a good night’s sleep.  Sad they are no longer available as taking one ensured I would be free with total confidence for at least 8 hours.  But this event was pretty sobering as for the greater part of my life I have endured CHs and had hoped to have put them behind me.

I decided, thanks to the helpful response from Pete Batcheller to give his regimen a bit of a go, although not in its entirety as I could not face taking such a range of pills.  Instead I have opted for the Vitamin D3 and Calcium with my usual cod-liver oil capsule and bit of aspirin.  So far so good.

As I came across my link to this forum while looking for something else in my bookmarks just now, I thought I would mention how things had gone so far.  So now I will forget all about CHs as I don’t want to tempt fate again.

I hope sufferers out there find suitable relief. Best wishes to all and thanks to those who helpfully responded.   The C word may not be in your dictionaries but one can always hope for a miracle.  :)

Long-term low dosage Aspirin (100mg or so) is routinely used as a mild blood thinner and there is some evidence that blood thinners such as Warfarin can have a positive effect on CH.

I used it for a thrombosis for a few months last year and had markedly less and less severe hits during the time. Whether this was purely the result of the blood thinning properties or any other ingredients I don't know.

Notwithstanding, the notion of anticoagulants improving circulation and therefore potentially affecting CH positively doesn't strike me as completely implausible.

Just an update - I have gone another year cluster free.  The only things I take regularly are a 70mg Asprin pill, a 600mg Calcium and Vit D3 tablet and a codliver oil one.  Oh, and a daily couple of bananas but I don't rate them as helping.  I still think the Asprin is my best contributor but who knows?  Fingers crossed now!

Pennine,

Great to hear you're pain free.

Can I suggest you take Vitamin K2 MK7 with the Calcium and D3, to reduce the risk if Calciifacion in the blood vessels.

If in doubt refer to Batch's recommendations.

Best,

Peter.

The replies are so eloquent. I could barely hold myself but managed. Nice to hear you're cured OP. Now where did I leave those aspirin.

It's beaut to know you've got your headaches under control, Pennine, just be sure to protect your tummy because aspirin can be a bit rough if you're not careful.

Pennine wrote, The only things I take regularly are a 70mg Asprin pill, a 600mg Calcium and Vit D3 tablet and a codliver oil one.

It's always wise to take Magnesium when taking Calcium Supplements! It helps the body absorb the Calcium.

Hoppy

I’m not a fan of aspirin or any of the other NSAIDs for that matter primarily due to the risk of GI tract bleeds.  There are other, far safer and effective ways of alleviating pain and lowering the risk of thrombosis that you can take for the rest of your life.

Some of my reasoning is based on the following links:

Even Low Dose of Aspirin Can Cause Intestinal Bleeding
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Don’t TOUCH that next dose of aspirin until you’ve had this important test
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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

If you read through the above links, you’ll see that the anti-inflammatory regimen provides a safe alternative to aspirin in alleviating pain and preventing thrombosis…  Add some Curcumin, CoQ10, and some Vitamin C and it gets even better for the cardiovascular system.

Take care,

V/R, Batch

Hi all... I am new to the new CH.com.  Been a sufferer for 30 yrs. Tried everything under the sun. Since more 2 years ago started taking D3, K2, Magnesium+calcium with potassium and Boron. I am not sure which of the above worked but been not only CH free, other headaches and flu free too! Now i can really live a life i wanted and am glad i did not succumb to suicide many times before (it was that bad). I hope this is it.. I hope i have finally found the answer to holding the devil at bay. Good luck and God bless everyone. :-*

Hey Vee,

Thanks for the wonderfully detailed update.  The short answer to your question is "All of the above."

The active ingredient responsible for the prevention of your CH is vitamin D3.  That said, vitamin D3 requires co-factors in order to support the genetic expression that prevents CH. 

Without the cofactors: magnesium, zinc, boron, vitamin A (retinol), vitamin D3 would not be as effective in preventing your CH and other health benefits.  Omega-3 fish oil acts as an anti-inflammatory and vitamin K2 helps prevent calcium buildup in soft tissues and arteries.  It also helps build bone mineral density.

For example, magnesium and zinc support the enzymatic reactions that hydroxylate (metabolize) vitamin D3 to 25-Hydroxy Vitamin D3, a.k.a., 25(OH)D.  They also support another enzyme that hydroxylates 25(OH)D to 1,25(OH)2D3, the active hormonal form of vitamin D3.  Boron acts as a catalyst in the above reactions.

When all this takes place within neurons in your trigeminal ganglia, 1,25(OH)2D3 combines with retinoic acid (Vitamin A (retinol) to form a 2 molecule dimer that attaches one end to a genetic strand at a vitamin D receptor (VDR) that just happens to be occupied by a zinc molecule, and the other end to a retinoid receptor (RXR).  This combination of VDR and RXR is called a vitamin D response element (VDRE).

Genetic expression is very interesting.  Once the vitamin D:Vitamin A molecule is attached to a gene within a neuron, it unlocks the neuron's genetic library of instructions and the neuron starts executing them.  These actions include replication, differentiation, an increase or decrease in genetic products, proteins and peptides, and programmed cell death (apoptosis)... what we would want to happen with cancer cells...

All of the above chemical reactions are consumptive...  In other words, vitamin D3 and the co-factors are consumed in this chemical reaction, used once, and then eliminated by the nerve cell.  Accordingly, they all need to be replaced on a daily basis, hence the daily anti-inflammatory regimen.

Genetic expression isn't limited to neurons within the brain and trigeminal ganglia.  A 2010 research study identified 2776 genomic positions occupied by the VDR and 229 genes with significant changes in expression in response to vitamin D3.  Accordingly, genetic expression takes place throughout the body and in particular, our immune system. 

In short, vitamin D3 and the co-factors turbocharge the cells that make up our immune system making them better equipped to handle the constant flood of antigens, (bacteria, virus and fungus). 

The net result of taking the anti-inflammatory regimen is fewer colds and the few that do happen are short lived with symptoms clearing in 24 to 36 hours instead of lingering for a week or more.  Flu becomes very rare.  We also sleep better with quality restful sleep, anxiety attacks go away and we just feel better.

What is also very interesting is the anti-inflammatory regimen also stops shingles from spreading.  Moreover, starting loading doses of 50,000 IU/day for 4 to 5 days at the first symptom of shingles stops the pain and prevents the outbreak of the painful rash.  What's not to like about that?

Take care and please keep us posted.

V/R, Batch

Hi Vee, thanks for your post.
it is great to hear that you too are pain free thanks to the D3 regimen, more importantly that you did not succumb to suicide.
The regimen is a life saver in many ways :)
All th best

Am I ?

I just have to make a note to all who are thinking about trying the D3 regimen , DO IT !
It can't hurt to try and it may help .
I have/had been having classic chronic Cluster symptoms for near 5 years and have been to many Drs and spent a lot of money on tests and 'ruling out' other things.
Yet nothing seemed to help . The episodes were still invading my life every day .
I had seen this D3 Protocol over a year ago but failed to think it a viable treatment for me.
I finally decided to try anyway as nothing else helped much and it couldn't hurt .I spent maybe $30 at Wal-Mart to get the supplies needed to get it started .
I didn't go full on 50,000 IU D3 loading doses , but only added Fishoil and D3 @7K a day plus a good One A Day Vit.

It has been just over 2 weeks now and I have been 10 days without any episodes !!
The nasty switch has turned off ! I am convinced that I was suffering from a D3 deficiency , probably due to the working indoors all the time and a northern living zone with short days and long nights . I didn't get much Sun and actually can recall that summertime seemed to be better with reguard to the episodes .
I know it is a bit early to say I am cured . But my life has changed dramatically in two short weeks .
The more I read from 'Batch'  the more I see the solid 'Science' of what he is promoting here .
I cannot believe that any of the Drs I have visited ever thought to suggest this . They only thought to prescribe damaging drugs and expensive tests and repeated visit to my Insurance cards.
I have since increased my D3 intake and will be getting the rest of the regimen . While I back off of Verapamil .
Thank You , Batch !! I will be forever in your debt .

MGP...,

Great to hear good news like yours.

Get your bloods done to establish where your D3 levels are. that will enable you to monitor it into the future.

Best,

Peter.

On Batch's recommendation I have switched from Cod Liver Oil to 1000mg capsules of Omega 3 Fish Oil, which I see on the bottle contains 300mg Active EPA/DHA - whatever that is! 

Basically what I have been doing over the last few years appears to work for me and I’m afraid all the technical stuff goes over my head.  I guess if I were struggling I would try to concentrate and understand it.  As it is, I want an easy life so I think I will probably leave well alone now and hope for the best.  (I still think that for me the Aspirin was the main contributor to my freedom since under normal circumstance I would not need it or anything else and only started taking it on a whim).

So I will carry on carrying on and maybe look again next year if nothing untoward happens before then.  Fingers crossed.   But I appreciate Batch’s profound input and hope others enjoy success and the help that this site offers to those afflicted. 

Now I prefer not to think about ‘them’ again - ignorance is bliss.

I know that I still have clusters.

I live in permanent remission as long as I stay in ketosis.
I am in the longest remission ever, yet every time I start to dabble with my glucose, the shadows come on and I bust ass getting back into a ketogenic state and they go away. I will always call this my cure.

I absolutely think it's the greatest thing for my clusters.
The pain is at bay, I am healthy, happy, and if you want to tell me you have found your permanent remission, i.e. cure,  you are more than welcome to say that.

Don't ever let anyone tell you that that kind of positive, happy, soul lifting feeling is something you need to keep to yourself, hide, or be shameful of.
Some like O2, some like D3, some like shrooms,
I like Keto.

When we have found our cure we want to shout it from the top of a mountain... Nothing but love.
Sorry to hear the beast got ya.
FWIW A ketogenic diet has kept me PF straight through an entire cycle, and I believe it is my cure. 8-)

Hey Scorpion,

You've made a very interesting and fascinating post.  A ketogenic diet and the anti-inflammatory regimen with 10,000 IU/day vitamin D3 are not mutually exclusive.  I suggest a similar diet avoiding sugars and carbohydrates along with the vitamin D3 regimen.

My preference is the Atkins diet witch is very similar to a ketogenic diet and I add medium-chain triglycerides (MCTs) like coconut oil which is also part of a ketogenic diet.

The word cure often raises eyebrows around here when used in reponse to any cluster headache intervention.  When taken at face value, with a complete cessation of CH symptoms...  it appears appropriate... None the less, there are distinctions between a cure and a remission and you've interchanged both in your post.

I tend to take the more conservative approach in the distinction between a cure and a remission with respect to the anti-inflammatory regimen... 

I'm 71, I've had CH for over 20 years, diagnosed as chronic in 2005, but I've been pain free of CH since I started the anti-inflammatory regimen in 2010 with a few exceptions...  Each year I stop taking this regimen as a burn-down test of my 25(OH)D reserves until CH symptoms return...

It usually takes from 7 to 10 days without vitamin D3 before CH symptoms recur... and that tends to happen when my serum 25(OH)D concentration that normally averages 80 ng/mL, drops to 55 ng/mL or below.  Accordingly I still have CH. 

It's interesting to note, I drove my 25(OH)D over 164.7 ng/mL with no adverse effects while under a physician's supervision with monthly labs including serum 25(OH)D, calcium and PTH...

My serum total calcium averaged 9.8 (Normal Reference Range 8.5 to 10.5 mg/dL) and PTH and my PTH remained low as expected at 22 (Normal Reference Range 17 to 70 pg/mL).

What was really interesting was after six weeks with no vitamin D3, I remained CH pain free...  My 25(OH)D serum concentration at that point was still 117 ng/mL so it had not dropped to the 55 ng/mL threshold where my CH symptoms usually return.

Accordingly, for me and many other chronic CHers, we can remain CH pain free and in remission... as long as we keep our 25(OH)D serum concentration above a threshold and in the "Green Zone" of 60 to 110 ng/mL by taking an average of 10,000 IU/day vitamin D3.

Wikipedia has a well thought out review of this topic with references...

"A cure is the end of a medical condition; the substance or procedure that ends the medical condition, such as a medication, a surgical operation, a change in lifestyle, or even a philosophical mindset that helps end a person's sufferings. It may also refer to the state of being healed, or cured.

A remission is a temporary end to the medical signs and symptoms of an incurable disease. A disease is said to be incurable if there is always a chance of the patient relapsing, no matter how long the patient has been in remission.

The proportion of people with a disease that are cured by a given treatment, called the cure fraction or cure rate, is determined by comparing disease-free survival of treated people against a matched control group that never had the disease."

Ultimately physicians look for "Medical Evidence" provided by conclusive data from two or more appropriately powered RCTs (n ≥ 100 participants), before they start using/prescribing any intervention...  Even then, the distinction between cure and remission is either blurred or not addressed.

With all that in mind, I'm inclined to think the distinction between a cure and remission really doesn't matter to a CHer... as long as intervention that results in a lasting pain free response... is reliable and repeatable... for as long as we take it.

Take care and thanks again for the post.

V/R, Batch