Is ClusterBusters right for me?

[erinreznik]

Hi!

I was recently diagnosed (after quite a journey to get to a diagnosis) with paroxysmal hemicrania. 
I learned about this group from NPR and became excited to hear there is a group for people who have pain similar to mine. I know paroxysmal hemicrania but I was wondering if ClusterBusters could be a resource. 
Any thoughts on if I belong here? Any one else who is non-CH but in a similar situation still get resources from this group?

 

thank you!

erin

[CHfather]

erin, probably your best bet for an overall view would be to type paroxysmal into the search bar at the top right of any page.  There are no recent regular participants here who have a hemicrania (PH or HC), and I think it's safe to say that for those of us who are active, our knowledge is all second-hand.

I assume you are using Indomethacin.  

my sense over many years of seeing people here with hemicranias is that busting doesn't help much unless it's a pretty constant thing, every five days or every week, which most people for good reason don't want to undertake. But you might get a different idea from what you find from a search.

On the other hand, the vitamin d3 regimen has (as I understand it) been quite helpful. You can send a message from here to xxx, who is called "Batch," and he will probably let you know what he has learned about this treatment and PH (to send him a PM, click on the envelope icon (above the search bar) and put xxx in to "To" line). 

 

[BoscoPiko]

Hi Erin,

I think anyone that suffers with an extreme headache condition not only belongs here, but can and will benefit from being here. I have read many a post from those with both HC and PH. Some have benefited from CH methods of maintaining pain free time as well as experienced a community of folks that understand pain in a way that non sufferers just can't comprehend. Sometimes it helps just to know you're not alone in your pain..