Sorry that I haven’t posted in quite some time!! I had good intentions for this blog, as at the time, I was really motivated to share my story. However, things in my life were up, then down, then all over the place, so I wasn’t really able to devote extra time to blogging. But I am interrupting this hiatus to share that I have recently discovered (thanks to a commenter) that an NDPH support group exists!! Just click here to go to the NDPH support site over at mdjunction.com. While I haven’t had much time this week to participate there, I think this is a great thing!! For a lot of years, I’ve been thinking that an NDPH group needs to be started somewhere on the web. Granted, we (those of us with NDPH) are small in number, but this is such a life-altering condition that it is just that much more important to connect with others who are going through the same thing. In addition, because NDPH is so chronic and can last for years and years, sufferers are at various stages at any given point. For instance, I’m now nearly 6.5 years into having NDPH, but I can remember what the first 6 months were like for me to experience, and if I can help guide someone through that time or offer support, then I think that would be wonderful. Likewise, I would hope to also gain support and guidance from those who have been at this “game” even longer than I have been!
In so many ways, people with chronic conditions go through the Kübler-Ross Five Stages of Grief of denial, anger, bargaining, depression, and acceptance. While these stages are usually applied to those who have received a terminal diagnosis or for those who are grieving the loss of a loved one, they can be adapted and applied to those who are suffering with chronic illness as well. At some point, I will share a paper that I wrote for nursing school on the “Theory of Chronic Sorrow”. While my paper was designed to talk about how that particular theory applied to the parents of neonates, I found in my research that it could also apply to those with chronic illness. So what I’m getting at here is that those with such a chronic condition like NDPH will all be in varying stages of these grieving processes in some way. And if the theory of chronic sorrow applies, we go through these stages again and again each time we experience a strong reminder of what we lost. Because we’ll all be at different points on the journey, it’s good to have others around to help us through it.
So, if you or a loved one is suffering from NDPH, I strongly suggest that you check out the New Daily Persistent Headache (NDPH) Online Support Group over at mdjunction.com.
Pain in the Brain 
I definitely can agree with the fact that people with chronic health issues experiences the 5 Stages of Grief. I certainly have experienced it myself, having NDPH – and feel as if I have been going back and forth between stages since it started 3+ yrs ago. You have a great point in that it is so helpful to have others to be able to reach out to who really know what you are going through…
Hi again 🙂 I hope you’ve been okay! I was tagged by a fellow headache-blogger to come up with 6 weird/random things about myself in my blog, and then tag others to do the same. So, I’m tagging you 🙂
Hi,
I am sorry we have clusters in common. : (
I also have been blogging about my condition as I can, and believe me I know how hard it can be to get the will power up to sit down and focus on writing when you are tired, and have other types of headaches going on as well. My wife and I started the blog in 2005 and the information stretches back nearly a decade because it was keyed in from a paper journal that existed before that.
Over the last few years I have experienced some odd changes in my clusters and I also get migraines in addition to them so even though I feel very well educated about my condition I am always looking for more and new sources of information… I have to admit I was unaware of NDPH, so I am eager to learn more about it. Even if the information has no barring on me, I like to be aware of what is going on in the world of headaches to a reasonable degree.
I plan to read through all your blog posts so you may hear from me again… I just wanted to say hello and thanks for teaching me something new. : )
Doc.
http://cluster-headache.blogspot.com/
Doc,
Thanks for stopping by! Nice to see a recent comment when I haven’t posted here in so long! I just added your site to my list of blogs on my favorites, and I will be checking it out soon! Sorry you have the CH, too – horrid thing, the beast is!
I’m going to be writing on this blog a lot more from now on – at least I plan to! We’ll see how well it goes – you know how it can be – up and down quite a bit sometimes!
Take care!