Hello all,

Can't believe I haven't found this earlier I must say that I've learned more in the last 5 days than the past 10yrs.   Thank you so much for providing your experiances and knowledge.  I have been 100% alone in understanding and dealing with CH.   I was just diagnosed last fall after countless doctors, and finally with the help of my detailed diary got in to a Neuoroligist.  At which point even knowing that I legit had something was groundbreaking news. 

I am from Edmonton Alberta, I get episodic CH, about once every 9 months for about 4-6 weeks.   I'm currently in week 5 of this cycle, so here's to hoping I'm PF by next week.  Last cycle and this one I was prescribed zolmitripan, and have only used that to abort, which works better than nothing most of the time for me.  Also my current doctor knows nothing about CH, so after the Neurologist prescribed them at start, current doctors just signed refills.

After reading alot of past posts here and on Cluster Busting I used the information and tried to get prescribed O2, you'd think I asked to buy a bomb.   I was told that he would never prescribe, and said that he only used official channels for research studies so would not accept the article included in Oxygen.    I was pretty upset.   I now booked an appointment with Nero who diagnosed but not till December.   

As I am so close to the end of current cycle (fingers crossed) I am at a bit of a loss as to what to do for this cycle.  One option is just status quo, keep taking Tripan.   Another is break away from Tripan for 5 days to try Busting, (I have reason to believe this will work)but cycle may be over before.  And with the lead time the D3 regiment takes not sure if will help before CH cycle is over.

My plan going forward:
Get baseline blood work done as per Batch D3 regiment
Get setup with O2, welding or prescription
Get all vitamins required for D3 regiment
Get MM.


Other relevant info,
Lived in Loas for 2 years,  MM grew in fields by my place and I was CH free from late 2009-early 2011, always thought it must have been the humidity.

Forever grateful

Trent

Thanks Mike,

It was my regular doctor who won't prescribe the O2, I'm hoping my Nero will, but earliest appoint is December.   From there I will try to get the O2 and blood work done.   Also will try and source a doctor that is more knowledgeable in CH.   

I've already had the CT scan last year at first diagnosis to rule out any other possibilities of anything major.   And over the years the typical "get your eyes checked and dental" as a source.   

I picked up the complete D3 regiment yesterday,  but without my starting 25 (OH)D level I don't know if I should load, ect.  I've decided to start at the maintenance level of 10,000iu D3.  Is this worth while without Loading?

After reading some of the alternative abort methods I tried a large energy drink at onset of CH, I'm very intune with when I'm getting them and can usually catch 15 min before.   At any rate the energy drink seamed to work.   It took some self convincing to try something new to abort rather than popping a Tripan because of risk of it not working and associated pain potential, as I'm sure your all aware. 

I'll continue to experiment with the alternates I feel comfortable with and hopefully develop an Arsenault of abort and Prevent tactics.   

Again this site and everyone's combined knowledge has been invaluable to me both in learning and emoitional

Trent

Great that you get a 15 minute warning. Most people have them come on with minimal warning, so you're lucky enough to have time to kick off aborting your CH before it really starts ramping up which should make it so much easier to control / abort.

The energy drinks are interesting and it is amazing the reaction you get when you talk to a doctor about them. Normally they seem totally against the idea, but then when you explain that the caffeine is a vasconstrictor (just like oxygen and the triptans), the taurine is a calcium channel antagonist (just like verapamil) and the carbonation means that it is absorbed quickly they soon realise that it is a valid way of aborting a headache (I've used them for CH and migraines).

You mentioned using a large one. You can try reducing the size down a bit to see what is effective for you whilst minimising the sugar overload.

Do you drink it as soon as you get the 15 minute warning or when the CH kicks off for real? Have you tried both? Which is the more effective?

For the D3, for several years there wasn't the suggestion of using loading doses and this worked well. However the loading schedule helps people their levels up a lot quicker, which normally means going CH pain free (or reduced) quicker.

You seem to be well on track to get on top with your CH, which is a massive step forward.

Ten years to find this site?
I know how you feel.
Perhaps the title of this thread speaks to the now, quite limited reach of this forum.

It's hard to find, unless you know where it is.
It's hard to see on a mobile device, and even harder to find on said devices (android & iPhone).
Reach to CHers is important.
When newbies do visit, they get a wonderful reception, but there are fewer of them in the past 5 years.
This place is important as a repository of information that streams like FB cannot provide.

I do wonder what the future holds for sites like this with slipping Google Search Engine Optimization and for the CHers who miss out because they simply cannot find this great resource with relative ease.

This site was linked to Wikipedia, but one particular A****** there by the name of "Doc James" acts as a one-man gatekeeper on the CH articles and systematically removes links to any support groups, or anything else he doesn't personally like.
He's an ER Doctor from the boondocks, so he knows CH best...

Other CH sites have tanked. Writing is on the wall for this one if it does not reach more people.
Were it not for Barry T linking me here in 2011, rest his brilliant soul, I would never have found the D3 regimen or relief. This site saved my life.
More people need easier access to it.

Ten years to find this site! 
If people are going to find support and relief, I think it's time for an overhaul.
The title of the thread is testament to that.

Finding it depends a lot on how you search.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

This site comes up as the first and second links (which is how I found it a few years ago just after I was diagnosed).

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

This has the site on the 4th page, well past how far most people would search.

Interesting info about a wikipedia editor. I used to do a lot of editing and I'll see what I can do to include links to support web sites.

Mike NZ wrote on Nov 3^rd, 2017 at 1:59am:


Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
ded

Quote:


This Wikipedia rule prevents the additions of links to sites like this and similar.

I'm still working on it, progressing it a bit. At least, for now, it covers that there are support groups, some with internet forums / social media, with a link to OUCH. Now that page has multiple links.

And the rule is "...normally to be avoided...", so to my mind that is very different from an explicit "MUST NOT" type rule, so it may be permissible.

However this sort of thing is precisely why the vast majority of the editing work is being done by a relatively small number of people.

Anyone else is more than welcome to help improve the CH entry there.