Hi,

I'm a 31 year old from the UK, and been suffering from CH since I was a kid. As is usual only diagnosed about 4 years ago after years

and years of stupid GP's.

Just wondered if any of you could give some advice regarding medication. I was originally put on verapamil after my diagnosis which

at first caused a few crazy heart racing problems for the first week then settled down. I happily went on taking this for about 3+

years even though it made me feel abit tired. Had about 1 or 2 attacks a week and sometimes a month or two with none at all things

were great.

Then in Oct last year the clusters decided to come back :(
5 or 6 attacks a day everyday :( ended up in hospital after a few days due to overdose in Sumatriptan :( Missed a few days work got a

GP + Neuro appointment to increase the Verapamil.

However, the increase in Verapamil started making really tired and causing my whole body to ache, I mean not like tired ache but like

pain in every single part of the body to such a level could hardly move properly, and whats worse is it wasn't relieved by sitting

down or lying down (that made it worse)

The routine ECG then flashed up red, first thing next morning called in to GP's to reduce the dose because something was wrong. Dose

reduced = clusters worse again, so went to Neuro who decided to try Topiramate, worst thing ever I started hearing things that

weren't there and felt very sick.

Neuro then said about Lithium, which I have been taking for a month now and gradually increasing the dose. At 600mg dose though the

weird all over body pain is showing up and its not doing anything for the clusters. Its also making me feel very sick, tired and my

pupils are really huge and really sensitive to light. I have mentioned this to him and he said I am on the last real way of helping

with cluster headache so give it a chance. Then the dose went up to 800mg and symptoms much worse, I'm having to avoid food now to

help with the pain.

So at the moment I am signed off work, going to lose my job soon and in constant pain all over, and still getting 4-6 attacks every

single day. Scared and to tired to leave the house anymore, which isnt like me.

I read on your site about D3 treatment thing, but thats probably best if I come off Lithium and get oxygen first? Trying to get

oxygen Neuro keeps saying yes since november and we are now in Feb :S

Sorry for long essay :P Hope someone can give me some advice.

Thanks to anyone who reads :-)

you need to get on the D3 treatment it really helped a lot of people on this site.

Mark.

Hi and welcome.

First, get a different Neuro, fast. Needs to be a headache specialist. Any Neuro worth his/her salt would have you on O2 as a first step.

Where in the UK are you?

Have you looked at OUCH UK ?

As Mark said, read and ask questions about D3. See the thread "123 days pain free...." In the Medications and Treatments section.

Best,

Peter.

Hey thanks for the reply, I am from liverpool and it's Dr Panicker at the Walton centre. I have been to Ouch and called them up once. She said the doctors will give you loads of useless medicine that doesn't work then you go for surgery which works wonders. This Neuro I am seeing says surgery doesnt really work though.

Gonna beg for oxygen next time I get to see this guy and make sure he fills the form in.

About the D3 I think need to quit Lithium and get O2 before starting it though?

Raw,

Don't even dream of begging.....Demand. O2 is an absolute basic for CH. can you not go to someone else? I don't know how the system works over there, but this guy is not helping you, by the sound of it.

Regarding D3 and Lithium, I'll let Batch ( the Guru on this) guide you. In the meantime, start reading.GOOD LUCK,

Peter.

Raww wrote on Feb 27^th, 2016 at 7:23pm:

Hey thanks for the reply, I am from liverpool and it's Dr Panicker at the Walton centre. I have been to Ouch and called them up once. She said the doctors will give you loads of useless medicine that doesn't work then you go for surgery which works wonders. This Neuro I am seeing says surgery doesnt really work though. Gonna beg for oxygen next time I get to see this guy and make sure he fills the form in. About the D3 I think need to quit Lithium and get O2 before starting it though?

Welcome home!

Peter is RIGHT....get that O2!!!

Find a headache specialist....a regular neuro is often clueless...tho he is right re surgery. (edited to ad...I just read your other post....your neuro is using well accepted treatments...sounds like he knows what he's doing...EXCEPT for the delay in O2????....THAT shoulda been FIRST!)

Re surgery!....no....  NO..... a THOUSAND times NOOOOOOOOO...this is the very LAST resort..for completely intractable cases.....I am troubled that this advice came supposedly from OUCH...I cannot fathom them saying this?????

Best

Jon

Hey Jon, the person at Ouch meant after verapamil cant be used or doesnt work, then the other preventatives are unlikely to work or the side effects are so horrible it cant be continued.    

You say surgery is a last resort but if all preventatives fail and I'm getting 4-6 attacks a day, everyday aren't I at the last resort stage of things? Well for me it seems like it getting depressed not being able to go to work.

Its sunday today but first thing tommorow gonna get O2 sorted out and try the D3 thing.

Raww,

You are nowhere near the last option. Good on ya with the O2. Most of us have found that we need to be quite assertive with the medics.

As well as the D3, have a read of the following. It is available in the UK and If you're interested I can PM you with details of someone to talk to.

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

Best,

Peter.

Hi Raww and welcome,
You seem to be in a bit of a pickle, It would seem to me that The medication you have already tried doesn't agree with you, so as a last resort ask your neuro if you could try Indomethacin, this has a good record in treating primary headaches that resemble CH's.

Cheers Hoppy

Wow Peter that looks amazing! does it work? If it works yes please would like more info :-)

Hey Hoppy, I googled that and "Indomethacin may also cause stomach or intestinal bleeding, which can be fatal. These conditions can occur without warning while you are using indomethacin, especially in older adults." after trying topiramate and having imaginary people walking around my house whispering things I am really scared of some of these CH medicines :( I am desperate and will try anything of course but if the side effects are so disruptive...

Thanks appreciate the response though :-) and from all of you who have replied, suffered alone for so long its really nice to chat to people who understand and dont suggest paracetemol :P

Raww wrote on Feb 28^th, 2016 at 4:02am:

Hey Jon, the person at Ouch meant after verapamil cant be used or doesnt work, then the other preventatives are unlikely to work or the side effects are so horrible it cant be continued.     You say surgery is a last resort but if all preventatives fail and I'm getting 4-6 attacks a day, everyday aren't I at the last resort stage of things? Well for me it seems like it getting depressed not being able to go to work. Its sunday today but first thing tommorow gonna get O2 sorted out and try the D3 thing.

Yo Raw...you are among people who know the depths and breadths of desperation...which means you are in the right place. Verapamil is NOT the be all and end all of treatment before giving in to the knife. Thousands of years ago...when folks presented with "headache"...they drilled holes in their skull. We have" progressed" to the point now where they drill holes in your skull and shove wires in your brain...YIKES!


You've only yet begun to fight before THAT! Read everything here....especially :

D3...  thread "123 days pain free...." In the Medications and Treatments section.

oxygen info tab at the left...if you use that right (minimum 15 lpm) your chances of relief are tremendous and the first time it works I guarantee you will weep tears of joy...and there's a few thousand people here who will confirm that......


Check out the gammacore......

Create a "headache diary" recording times and possible "triggers".... which could be foods (alcohol, glutamates),  or smells (perfume, petrol) or actions (like exercise or overheating) which can then be avoided....

Slam a COLD energy drink that contains at least 100 mg of caffeine and 1000+/mg taurine at the first sign of a hit....Red Bull is the famous one...but it is expensive and low in these ingredients...buy the cheapest that has the right amounts...

Imitrex (sumatriptan) injections are expensive but wonderous..if your body can't handle that consider Zomig nasal spray for hits uncontrolled by any other methods (my last resort)...also expensive but 99% effective for me

Keep asking questions...there is always somebody here...and we care!

Best

Jon

What Jon said.

I have been a clusterhead for 3 years, and by following the advice Jon wrote, I have been able to make my CH manageable.  This site has been a Godsend to me.

Hey Jon, Yea i got to a VERY desperate place of no hope before i posted here. Now I have got a few new options to try!

I live in the UK and have an unlimited supply of free Imitrex injections and they do work wonders, but having more than 4 in a day makes me feel a bit sick. I do understand your not meant to have more than 2 in 24 hours.

Triggers are definitly achohol even a sip of it so haven't had any in over a year now :(

I have been keeping a diary of the attacks but haven't written down possible triggers.

I should try the energy drink thing, strangely I love coffee a lot so maybe some link there :-)

Oh and also!!! I have ordered D3 Vitamins and some omega3 tablets so very excited for their arrival :-)

Calling Neuro first thing tommorow to arrange O2 as well so hopefully all goes well :-)

Hi Raww and welcome,
please do yourself a favour before you go for prescribed meds or surgery, GET YOURSELF ON TO BATCH'S D3 REGIMEN, do it fully and completely, AS PER BATCH, and more than likely you will become PF before too long.
When your D3 arrives, you can start by taking 50000iu D3/day for 2 or 3 days. when you do that, try to take 600mg of a good quality magnesium/day as well, if you don't you'll get yourself depleted of magnesium and probably end up with cramps in your muscles.

All the best

Raww wrote on Feb 28^th, 2016 at 3:52pm:

Hey Jon, Yea i got to a VERY desperate place of no hope before i posted here. Now I have got a few new options to try! I live in the UK and have an unlimited supply of free Imitrex injections and they do work wonders, but having more than 4 in a day makes me feel a bit sick. I do understand your not meant to have more than 2 in 24 hours. Triggers are definitly achohol even a sip of it so haven't had any in over a year now :( I have been keeping a diary of the attacks but haven't written down possible triggers. I should try the energy drink thing, strangely I love coffee a lot so maybe some link there :-) Oh and also!!! I have ordered D3 Vitamins and some omega3 tablets so very excited for their arrival :-) Calling Neuro first thing tommorow to arrange O2 as well so hopefully all goes well :-)

Coupla other thoughts......

Imitrex...from reports I've read.... acts quickly then fades...hence your need for multiple doses (yur right...shouldn't be more than 2/24/hrs). Consider Zomig NS 5 mg...I found they "protected" me for 12-18 hrs...sometimes 24. Don't mix the two though....

Re the energy drinks...my belief that extra cold helps (numbimg?) and carbonation is important as it speeds absorption....

In my experience with caffeine/coffee I found that the "key" is to only use as needed. If you drink regularly throughout the day your body adjusts...the human body is a marvel of homeostasis!
What you need is a bolus...like a brick through the window.... at the appropriate time...so the effect is maximized....

Best

Jon

Raww,

Yes, gammaCore works and has no medication element or invasive element. I have not been without a unit since 2012.

It is expensive, but I think you should talk to the Regional Sales Manager got UK and get some more info.

paul.eday@electrocoremedical.com

Tell him you got his details from me....Peter Murphy, in Republic of Ireland.

Good luck,

Peter.

G'day Raww, welcome, and just as an aside Indomethicin can be a very effective medication (I swear by it) but it must be taken under the direction of a doctor and alongside medicine to protect your tummy.

Done properly, side effects are minimal and manageable.

Thierry wrote, When your D3 arrives, you can start by taking 50000iu D3/day for 2 or 3 days. when you do that, try to take 600mg of a good quality magnesium/day as well, if you don't you'll get yourself depleted of magnesium and probably end up with cramps in your muscles.

Yes! This is important, as I found out myself recently and not knowing what was going on! As a rule, I always buy Magnesium Citrate, but a couple of months ago I bought Blackmores Magnesium Oxide 200mg x2/day and kept waking up during the night with muscle cramps in my legs, and couldn't work out why, but since starting back on Swisse Magnesium Citrate 927.64mg - 150mg x2/day + the 50mg I get from my vitamin tablet, now everything is a ok  :)

Hoppy.

AussieBrian wrote on Feb 28^th, 2016 at 6:00pm:

G'day Raww, welcome, and just as an aside Indomethicin can be a very effective medication (I swear by it) but it must be taken under the direction of a doctor and alongside medicine to protect your tummy. Done properly, side effects are minimal and manageable.

Yes indeed, Indomethacin (aka Indo and Indocin) is a powerful anti inflammatory medication - kind of like Ibuprophen/Advil on steroids – without the steroids! I have taken some seriously high doses of it when I was chronic with CH's for so many years.

In fact, Indo can be considered the "gold standard" in differentiating a diagnosis of Cluster Headaches vs. Chronic Paroxysmal Hemicrania, which is a "cluster like" headache. Experienced headache specialists will try this first, in order to help to reach a headache diagnosis.

CPH sufferers generally get immediate relief with Indocin, while by far most CH suffers do not. Experienced headache specialists have known this for years and use Indocin as a DX tool. As we all know, it is soo important to get an accurate diagnosis......

When taking this med, it is important to protect the users gastro intestinal system.

Marc

Indo has certainly worked for me, killing the CH dead but the Hemicrania Continua (HC) is still there (very much reduced), my other HA's are also affected (for the good) by the Indo and Amitriptyline  (Neck HA and Migraine). After a time the Indo became less effective.

I disagree, I know I am in a minority  but I strongly disagree. When you are at the end of your tether a correct diagnoses means nothing if the pain (the extreme pain) is still with you.

And I know this is a big problem because when you start popping pills and injecting with anything, the symptoms are likely to change and a proper diagnosis is made more difficult or impossible.

But with a proper diagnosis of a Primary HA you are not going to be told what is causing it, you are going to be told that with these symptoms these therapeutic approaches often work.

Now lets look at that; you may be on heart problem meds, High BP meds, Arthritis, diabetes, asthma, gout, scurvy etc etc etc and yet your personal HA fits in with your personal Chemistry and the great and the good can say yo have this sort of HA.

Bollocks, can they Fuckers Like! (Lancashire Term)

What the “experts” (not very many) need to do is tell the general practitioners (lots of) that when someone presents with a really, really, really bad HA is to try these approaches abc...-...xyz and when/if they are controlled and the experts can get round to seeing them, possibly in 6, 8, 12, 18 … months they will have a better idea of what the underlying personal pathology / psychology of the patient is. Plus they will know what works and what doesn't.

Don't put up with the pain because it hasn't got a name yet. The name means nothing if it still hurts.

Hey Raww,

Welcome to fraternity, I am an apprentice clusterhead like yourself having only had my 1st attach last November. I am still very much learning how to deal with CH however for me O2 and Zomig are great to stop a CH attack in its tracks.

I am very interested in your comments re verapamil. I have been on it (low dose as I cant handle large doses)  for a couple of months now. I too have serious body aches and pains along with ongoing dull headaches which up until now I thought were after effects of CH.

Following a visit to my GP I am off the verapamil from today. I have had blood tests done and will commence the D3 routine once I get baseline blood results.

I received great support in a short time from members of this site.

Stay Positive

Con

lancashire Lad wrote on Feb 29^th, 2016 at 9:45am:

Indo has certainly worked for me, killing the CH dead but the Hemicrania Continua (HC) is still there (very much reduced), my other HA's are also affected (for the good) by the Indo and Amitriptyline  (Neck HA and Migraine). After a time the Indo became less effective. I disagree, I know I am in a minority  but I strongly disagree. When you are at the end of your tether a correct diagnoses means nothing if the pain (the extreme pain) is still with you. And I know this is a big problem because when you start popping pills and injecting with anything, the symptoms are likely to change and a proper diagnosis is made more difficult or impossible. But with a proper diagnosis of a Primary HA you are not going to be told what is causing it, you are going to be told that with these symptoms these therapeutic approaches often work. Now lets look at that; you may be on heart problem meds, High BP meds, Arthritis, diabetes, asthma, gout, scurvy etc etc etc and yet your personal HA fits in with your personal Chemistry and the great and the good can say yo have this sort of HA. Bollocks, can they Fuckers Like! (Lancashire Term) What the “experts” (not very many) need to do is tell the general practitioners (lots of) that when someone presents with a really, really, really bad HA is to try these approaches abc...-...xyz and when/if they are controlled and the experts can get round to seeing them, possibly in 6, 8, 12, 18 … months they will have a better idea of what the underlying personal pathology / psychology of the patient is. Plus they will know what works and what doesn't. Don't put up with the pain because it hasn't got a name yet. The name means nothing if it still hurts.

Yes of course, as a previous chronic CH sufferer with 1-6 attacks per day, I do understand the pain. And NO, I didn't give a damn about the name. I was trying all kinds of drugs/remedies/cures out of desperation. 

BUT having a clear diagnosis lead me to becoming pain free. I cannot begin to place a value on getting my life back. What that is worth?

But folks suffering with Cluster Headaches and Hemicrania Continua and Neck Headache and Migraines were not the subject of my post. I'm only 62 years old, but now I do not need any drugs/medications at all now - so I have no idea of the psychology involved with a highly complex case like yours. I was addressing Cluster Headaches. Dramatic complex headaches with ancillary health issues are a whole different animal and the treatments for each are often blurred among each other. The treatment required reaches far beyond the scope of ch.com.

I wish you well, sir.

Marc

Cons Law wrote on Feb 29^th, 2016 at 1:59pm:

I am very interested in your comments re verapamil. I have been on it (low dose as I cant handle large doses)  for a couple of months now. I too have serious body aches and pains along with ongoing dull headaches which up until now I thought were after effects of CH. Following a visit to my GP I am off the verapamil from today. I have had blood tests done and will commence the D3 routine once I get baseline blood results.

In trying to prevent CH, the standard approach is typically to start with verapamil and increasing the dose in intervals until one of the following happens:

• The number of CHs drops to an "acceptable" level
  
• The side effects become "unacceptable"
  
• The dose gets beyond the "comfort level" of the doctor
  

In your case clearly the side effects became unacceptable. We all have our limits which I've found with a few medications like topamax which was great for its intended purpose apart from the fact that is severely impacted my mental processing abilities.

What normally happens when one drug doesn't work (i.e. it doesn't get to an acceptable degree of success before the side effects become too much) is that the current drug is stopped and next potential drug is tried.

If all the possible options have been tried then this can result in an evaluation as to what is an acceptable level of success compared to the unacceptability of the side effects.

Hey Cons Law,

No need to wait for your 25(OH)D lab results to come back...  The odds are very high you're vitamin D3 deficient, i.e., <30 ng/mL (75 nmol/L).  Start this regimen now and avoid a lot of needless pain.

Take care and please keep us posted.

V/R, Batch

Hi Marc

Good to hear you are pain free, but that's not what brought you here.

And if your cure worked for everyone this site would have closed long ago  because the general practitioners would have cottoned on and the problem would have gone away.

I came here with a problem, a headache that was so severe I couldn't cope with it (as many others do)

I came across good advice, poor advice and advice in between.

I learnt (not from here) that I had multiple headaches but it was just one that caused me my problem. I learnt that people with migraine can get pains all over their bodies, I learnt there were no pain receptors where my pains manifested themselves and was told this is normal and to get used to the idea.

I got used to the idea but still the bad pain stayed.

I couldn't understand the badge of honour that people on here wore, “this is a CH site, you ain't got it so bugger off”. Some were more supportive than others and I chose what advice to take.

I have more than one type of headache (according to specialists), I'm not unusual, most CH sufferers do even the “experts” concede that the different HA's can be created from a single source (I know this to be true for both primary and strangely enough secondary types). So is the “pure” CH  something to be held intractably special?

I don't think so! Sure there are some sufferers who can time their attacks by the seasons and time of day and if that's the only problem they have; what I would never say, ever, is lucky for them.

What kicks off that shit awful pain behind an eye in half your head has potentially multiple triggers, there are as many types of triggers as there are personal chemistries/physiologies/psychologies. It ain't one size fits all.

I think we agree on lots of aspects of CH but I don't belong in a box, none of us do.

Some are more susceptible to pain than others, for some placebos work, for others the fright of a time of day or season looming can create that spark of agony. For others its a piece of bone, fibre, ligament, tumour (benign or otherwise), or blood vessel that impinges on a wonky nerve that kicks off the grief.

I have witnessed many putdowns, attacks, counterviews on this site along with welcomes, sound advice and encouragement (sometimes from the same people in different camps).

I don't know what the welcome page should look like, what the proper hierarchy of advice should be but if there is one resource on this planet ( with the ensambled expertise, experience and commitment to assist others in similar need ) then I don't know about it.

Sorry I had (or they said) I had too many headaches for this site.

Wow Batch posted on my first ever forum post here :-)

Okay well my update, I went to see the neuro today and finally got the oxygen prescribed, so few days wait for that.

Then told him I stopped taking lithium the day before, and explained the side effects. But he wants me to carry on regardless for 4 weeks on 600mg because Lithium is the only option and apprently the horrible side effects will settle down? :S He also claims that lithium doesn't always work on reducing cluster headaches straight away?

But anyway... :-) when I got home my D3 and omega3 was delivered. Just realised I need the other vitamins as well but just ordered 2 as a test to see if it worked for me. Im guessing I need the magnesuim tho.

Well wish me luck everyone with hopefully maybe a full nights sleep with no attacks :-)

Get all the Vitamins recommended by Batch. It's the best way to give it a proper chance of working.

Peter.

Hey Raww,
As you say, You need the magnesium, otherwise you'll end up depleted. A normal level of magnesium in your body is necessary to maintain a good mental health and muscles health (amongst other things). If you are low in mag, you'll get cramps.
When doing the D3 loading doses -as per Batch- you should ramp up the mag to 6 or 800mg on the days you take 50000iu D3.
Like Peter says above, go ahead with the D3 regimen with all the ingredients, you won't regret it. Do exactly as Batch says and you'll soon be grateful you did. I and many more are.
All the best

Hey I am back. Sorry about the thread necro I have been away awhile and wasnt sure to start a new one or just post on my existing one.

I finally got oxygen off Neuro and wow it works well :-)

Also tried D3 for a month and it had no noticable effect :(

As for preventative he started me on pizotifen which has seemed to work magic. According to neuro doesnt work for everyone but for some it works amazingly well. But the beast always wins it seems :-( 

I went back to work to try and get on with my life and managed a week before I could hardly walk.

I am constantly tired, every time i eat any food I need to sleep or lie down otherwise I just collapse. And my whole body aches and my mind is completly foggy and tired as well.

I wasnt sure what it was until i accidently missed a dose last night. I feel so much better now, went for a long walk in the park ate food feel really happy and positive with loads of energy. But now I know I need to poison myself with this pizotifen stuff again otherwise headaches will come back.

Life is not fair lol. A choice between horrible pain or even worse horrible pain.

Hey Raww,

Good to see you back.  I was just reading back on earlier posts and I'm delighted to hear that  you got the O2 sorted and it's working well for you.

Sorry to hear that the D3 didn't work after a month of trying.

In my case it took a bit longer than that.

Did you have your blood serum level checked at the time? If so, what was the result?

I'm trying to establish if it needed a bit more time or an adjustment in the initial loading doses.

Keep well,

Peter.

Hey Raww,

Peter made some good points regarding your experience with the anti-inflammatory regimen and vitamin D3.  The 25(OH)D lab test is very important if this regimen isn't working after 30 days... 

Five years experience working with hundreds of CHer taking this regimen tells me there's usually a reason why it's not effective as a CH preventative.

For example, did you take at least 10,000 IU/day vitamin D3 and all the cofactors at the suggested doses as listed in the following link? 

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Did you try the 2-Week or 4-Week vitamin D3 loading schedule?  Did you try the Benadryl (Diphenhydramine)?

If you haven't tried all of the above, I'd give this regimen a second try.  It should provide relief and in the proces, beat the onerous side effects caused by the pizotifen you're already experiencing.

Take care and please keep us posted.

V/R, Batch

Hey Batch,

I tried taking about 10 of the 5000 D3 tablets a day because i was desperate and wanted results. I thought overdosing on D3 cant be bad :D

I took a pic of the tablets I got but its to big to upload.
Here are the links to the things I bought.

bulkpowders.co.uk/vitamin-d3-tablets-5000iu.html

bulkpowders.co.uk/complete-multivitamin-complex.html

bulkpowders.co.uk/super-strength-omega-3-softgels.html

bulkpowders.co.uk/magnesium-bisglycinate-tablets.html

So I was taking one of each of the others and 10 x D3 tablets.

So have I got this right?


Also I can get D3 tests done when i see GP in August.

Hey Raww,

Thanks for the update and additional info on the supplements you take.  The 2-Week and 4-Week vitamin D3 loading schedules each call for 600,000 IU taken over two or four weeks.  This should result in an average 25(OH)D response of 60 ng/mL (150 nmol/L) on top the staring/baseline 25(OH)D serum concentration.

The following chart illustrates the starting 25(OH)D serum concentration reported by participants in the anti-inflammatory survey prior to start of regimen.  It represents the normal bell shaped distribution curve.

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The odds are your starting 25(OH)D serum concentration fell between 13 and 33 ng/mL (32 and 55 nmol/L).  Accordingly, if you completed either the 2-Week or 4-Week vitamin D3 loading schedule, your 25(OH)D serum concentration would have been 73 to 93 ng/mL (182.5 to 232.5 nmol/L).  It will be interesting to see your lab results.

You should note that your 25(OH)D serum concentration will drop rapidly as soon as you stop taking vitamin D3 as 25(OH)D has a half-life of two to three weeks.  In other words, if you stopped taking vitamin D3 with a 25(OH)D serum concentration of 73 ng/mL (182.5 nmol/L)... three weeks later it would be 38 ng/mL (95 nmol/L).  Moreover, we need to maintain a 25(OH)D serum concentration of at least 80 ng/mL (200 nmol/L) in order to experience a lasting CH pain free response to this regimen.

The rest of your supplements look about right except I would switch to a liquid soft gel form of vitamin D3, add the 3-month course of vitamin B 50 complex, and start a week to 10 day course of a good first-generation antihistamine like Diphenhydramine (Benadryl).  . 

The powdered form of vitamin D3 may be just fine...  However, as vitamin D3 is fat soluble, the liquid soft gel form of vitamin D3 may have a higher bioavailability. 

Regarding Pizotifen...  It is widely used as prophylaxis in children with migraine, but there are no studies listed in clinicaltrials.gov assessing its efficacy in preventing migraine much less cluster headache.  A review in the BMJ Clinical Evidence concluded that although pizotifen is almost universally used for paediatric migraine, there is no evidence from well-conducted trials that it is beneficial.  See link below:

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That said, there's a very long list of adverse effects from taking pizotifen.  Accordingly. I'd suggest asking your neurologist about switching to the leading CH preventative, verapamil...

Regarding overdosing on vitamin D3... It's realy hard to do unless there's a problem with the parathyroid glands... 

If someone has hyperparathyroidism, an abnormally high concentration of parathyroid hormone (PTH) in the blood caused by an adenoma (benign tumor) on one of the four parathyroid glands, even 3,000 IU/day vitamin D3 could be too much resulting in hypercalcemia.

Most vitamn D3 experts claim we would need to take ≥ 50,000 IU/day for roughly three months to experience vitamin D3 intoxication as indicated by a calcium serum concentration above its normal reference range, (hypercalcemia).

Then there's Dr Cicero Coimbra, MD, Ph.D, a neurologist in Saó Paulo, Brazil who treats his Multiple Sclerosis (MS) patients with a protocol very similar to the anti-inflammatory regime we take to prevent our CH with a few major exceptions. 

The big differences are he prescribes 1000 IU of vitamin D3 per Kg of body weight a day.  For a sleek rascal like me weighing in around 210 lbs (95 Kg), I'd be taking 95,000 IU/day vitamin D3 on the Coimbra protocol... That dose is 10 times higher than I suggest to prevent CH...

His protocol calls for a complete avoidance of calcium supplements and calcium rich foods (milk, cheese and other milk products).  He also requires his patients drink 2.5 liters of water a day to help flush any excess calcium from the kidneys.

I've spoken with one of Dr. Coimbra's MS patients and she indicated the labs for 25(OH)D are basically useless as nearly all of the 25(OH)D assay methods are only capable of measuring 25(OH)D serum concentrations up to 150 to 165 ng/mL (390 to 413 nmol/L).

It is also important to note that none of Dr. Coimbra's MS patients, (over 2000 of them) have experienced vitamin D3 toxicity/hypercalcemia as long as they stick with the treatment protocol.  95% of his MS patients on this protocol are in complete remission from MS living normal lives with a very good quality of life...

Hope this helps.

Take care and please keep us posted.

V/R, Batch

Hi Raww,
You're in good hands here with Batch giving you one to one attention.
Below is a link to a Vit D3 yo can buy and get posted for cheap from US.

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One softgel/day is all you need when you're not taking loading doses.


iherb is a great site for getting all the components of the regimen. It is cheaper than all other places i looked into.

All the best