tangerinearmy wrote on Jun 12^th, 2015 at 7:56am:
Nahh, not upset or stubborn.
It's my personality type (INTJ).
I'm prone to taking in as much information as possible, processes it and assemble the logic in everything.
I'm open to new treatments, but at the same time I'm fearful of loosing the progress I've made.
The toll that the course of steroids had on me was brutal.
(They had no effect on the CH headaches, made every joint in my body hurt for over a week, and extended the length on my cycle.)

I suppose that I unintentionally started an intellectual conversation regarding the paradox of CH treatments.
(I'm naturally drawn to such things...)
I do not believe that O2 treatments are dangerous, but conventional medical doctrine does.
My doctor did not want to prescribe O2 to me and wanted to take a different approach.
Whatever...
His initial treatment plan of Sumatriptan and a steroid taper was inline with sound CH treatment practices.
In my case it was not a good idea.
The revised treatment plan is to treat the initial CH hits with Sumatriptan and then receive a local steroid injection in my scalp.
Alternately, since my cycle is so short, I could just treat the whole thing with Sumatriptan.
That is way I chose to go this time around.

My Neurologist is pretty cool and highly regarded in CH circles.
He has put me in "as needed" status for office visits.
Since we have thoroughly documented my CH syndrome and have an effective treatment plan, he sees no need for me to waste money on traveling to see him.
(Like most really good HA specialists, it is difficult to get an appointment, so this helps out other patients.)

On the whole D3 thing, all I wanted to do was point out that for those out there that just need some support while they cope with CH, getting a dozen posts telling you to "Shut up and take your vitamins," may be less than helpful.
(I'm exaggerating a bit, but hopefully you get the point.)
This forum in particular has been very helpful for me personally and I'm hoping that it can do the same for others.

My doctor suggested I take a vitamin D supplement
together with magnesium way before I found this
website! Because my vitamin D level was so low to
prevent skeletal problems later in life, he also suggested
I take a multi vitamin for my general wellbeing, It
didn't stop my CH's, but I must say, I felt a 100% better
in myself. So, If the vitamin D3 regiment doesn't
work for you, think of the other benefits it can give, and
by the way, since I started the vitamin D remedy 2 1/2
years ago, I haven't had a CH.

Cheers, Hoppy.

Ok, (and not arguing) I was in a STUDY on O2 at high rates (using a demand valve). It was amazing how fast it would stop a headache (2-5 minutes usually) and I've not seen any side effects. The results were given to a very respected doctor and his results were printed in a paper for the neurological community. They were positive about the high rate of O2 on CH.

And about the D3... my neurologist is doing studies on it for CH as well as MS and having positive results. He treats over 100 CH patients and keeps up with the latest news on headaches (he suffers from migraines so he has a vested interest).

Since going on the D3 regimen I've not been hit with a CH in almost 2 years and that's after being chronic since '97 (and sometimes having 10-15 CH hits a day).

I've been coming to this board for about 17 years (pretty much daily) and have tried about everything anyone has mentioned and this is the longest I've EVER gone without a headache, so something is working.

The purpose of this board has always been to "share" information. What works for this one or that one. None of us are alike and what works for one MIGHT not work for another, but if we're hurting bad enough we'll try about anything. Thru the years I've tried some pretty outrageous things (read the archives and you'll see to what extents some of us have gone).

Right now the O2 seems to be working for about 70-75% of those who've reported in on it and the D3 is working pretty much for ALL who've reported and are doing it "right".

Over the years we've done more research than most medical schools have at their disposal and it's all here for the asking.

But the advice we give out is for support only and not for argument's sake. Like I said - what works for one just might not work for someone else. But when you're hurting... well.. it's nice to know you're not alone. 

PTLeighton wrote on Jun 11^th, 2015 at 1:03pm:


Just read this post.  A handful of people said to try the D3 regimen, it worked for them.  Like it worked for me.

If you don't want to try it, then don't.  But to say someone will feel like you called them stupid is ridiculous!!! Ha! They said, "try the D3 regimen it worked for me."  If that offends anyone, they have a serious problem...

These people are trying to help.  That's what a message board is!!  Or do you just want to post your message and have no one reply?  Then all you have is a blog with no comments!

It's TOTALLY AMAZING to me how someone wouldn't try something that works for so many!!  I honestly truly CANNOT BELIEVE IT!!!!!!!  My head hurt so bad when I got CH, I would try anything to stop it!  I read about the D3 regimen here and bought all the vitamins WITHIN TWO HOURS!!!  And guess what, after sleeping upright for three weeks, after THREE DAYS I was sleeping normal again!  After 2 weeks, CH gone 75%.  After 5 weeks gone 95%.

Then you have people who have had this for FIFTEEN YEARS!!!  OR MORE!!  They read about this D3 regimen and they're like, "Oh well, I might try it some day.  Right now im taking 5 different medicines all with adverse side effects and they only work half the time.  I read your CH completely went away by using D3 regimen, but I'm going to keep taking my 3 pills and two injections daily, along with oxygen to get a little relief.  Thanks for the D3 tip!!"  This sounds stupid but unfortunately its true...

I'd like to thank everyone for their responses to this thread.
(Even those that think I'm an idiot.)

I'd also like to thank those that developed and share the D3 regiment and their experience with it.
It is fortunate that those of you that have been cured of your CH symptoms continue to visit this board and support others that are affected by this terrible syndrome.
Bless You...

Hopefully I'll be able to join your ranks one day.

Best Regards,

PTLeighton wrote on Jun 17^th, 2015 at 2:59pm:

hey PT,
           As Maz said, your part of this forum
But, I'll be honest,  Its your condescending manner about things that your not O.K with that gets peoples backs up !
It was you that first said that you get the regime "rammed "down your throat as the "b" all and end all !!   That sort of comment is going to get peoples backs up !    Plus the attitude that your Nuerologist is the best that their is etc etc where glad you have great help !
Listen, everyones different here, we all react differently to medication, preventatives and we all have beliefs of what is the right way to go about things, But if you want to come in and immediately pronounce that people on this forum are quick to be upset ( or something along those lines), well, your going to get a bit thrown at you mate.
To be a smart arse and tell us we are all cured !  that's not helping your plight at all, you no we are not cured, there is no cure,  that's not a very intelligent thing to say.
Listen,  get of your high horse for a minute and just communicate with us, dont lecture us, belittle something you don't believe in, just join in, we wont shoot someone down for wanting to stick with main stream medications, that's an individuals choice.
advice, read up, listen,  and you might realise, that We have cluster headaches as well, where the same !
And apart from all the above, The forum also offers support and a friendly ear when the shit hits the fan for some of us and the beast comes knocking !
If you want everyone here to agree with your every word, Well, that ain't going to happen, cause we are all different.
But mocking something or someone is going to get a whole heap of reactions, so suck it up, cop it on the chin and just try to have a little empathy with all those here.
Hopefully you can see where I'm coming from, I hope you hang round and empathetically contribute, or who knows you may even learn something, I did !

all the best
colin

BarbaraD wrote on Jun 19^th, 2015 at 10:25am:
Thanks for the kind words Barb.

Have I ever met another Clusterhead?
As a matter of fact, I met one the day I was diagnosed in the ER.
There was an EMT that was interning at the ER, working towards his paramedic credentials.
After being misdiagnosed for 10 years, I started to have a KIP 10 right after lunch and decided enough was enough.
My allergy doctor was scheduling me for a head CT, so I figured I would just get to the hospital.

I arrived at the hospital and sat in front of the receptionist for about 10 minutes until I was able to speak.
(Was in the middle of one of the peak waves and made myself sit down so I didn't look like a menacing mental patient.)
Once I finally could talk, I told them what was going on and the got me in a room within 10 minutes.
The EMT that was interning in the ER took my vitals and the ER Doctor came in shortly there after.
That ER Doc immediately strapped O2 to me and gave me an IV.

After waiting about 25 minutes for my headache to subside, the doctor asked me if I had ever gone online to research my condition.
I told him no, I never had.
I was told previously that it was allergies and was getting concerned that I might have a brain tumor or something.
(Of course most of us have thought the worst when we didn't know what we had.)
The Doctor then said that I pretty much described word for word the text book definition of Cluster Headache Syndrome.

Just prior to being discharged, the EMT intern stopped to check on me and said that he is a Clusterhead and wanted to make sure that the ER Doctor picked up on my symptoms.
Only after I left there and started researching things did I realize how lucky I was to be properly diagnosed.

While I was waiting for my Neurology appointment, the ER Doctor gave me an Rx for Verapamil.
(Found out later that the dosage was way too low to be of any use.)
When I was filling my Rx at a local pharmacy that I'm friends with, my pharmacist buddy tells me that one of his family members is a Clusterhead as well.
My pharmacy said that they will never let me go without my Sumatriptan if at all possible.
They keep two boxes of autoinjectors on their shelves at all times just in case.
They will also give me the medication and run the paperwork later on if the insurance is jamming me up on the refill interval.
I'm so blessed to have a good pharmacist and will always keep my business there.

To your point though, yes, having something as powerful as CH in your life can most certainly forge bonds.
NO ONE else knows the kind of pain we have to endure.
I've shattered my pelvis, torn my urethra, ruptured my spleen, bruised my liver and even had a touch of gouty arthritis.
NOTHING comes close to the intensity of a CH hit.

Take care...