After a long hiatus…

Pain in the Brain has returned!  I apologize for basically jumping ship after getting started on this blog awhile back!  I have had many things going on in the world of headaches and life for me in the past several months, which will give me much to write about!  I also plan to update my sidebar with migraine and headache blog links, in addition to the sites I have listed of headache centers and headache resource pages.

Stick around for more on my story of life with migraine and headaches, as well as general commentary on issues relating to chronic pain.

NDPH Support Group

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.

Hello and Welcome!

Hello and welcome to my blog! I am a twentysomething female who suffers from New Daily Persistent Headache and Cluster Headache. Even though I’m blogging anonymously, those who know me will probably easily be able to identify this site as mine as obviously my story is going to be unique to me. All I ask is that if you’ve found this site and you do know me, please keep me anonymous! Also, please leave a comment or send me an email at paininthebrainblog (at) gmail (dot) com so that I know you’ve stopped by! This blog will contain some of my own personal medical information, so even though I know I’m publishing to a public domain, I would appreciate it if anyone who does identify me would act sensitively in a way that you would wish to be treated, were the roles reversed! Thanks!

And now all of that aside – I’m very excited to be starting this blog! A little over 6 years ago, I got a headache that has never left that was later officially diagnosed as new daily persistent headache. And then a little over 3 years ago, a second headache type was diagnosed: cluster headache, which, as time went by, became diagnosed as chronic cluster headache. Both are rare headache types, but thanks to some very proactive people with clusters, we have sites like ClusterHeadaches.com, OUCH US, and OUCH (UK). (OUCH stands for the Organization for Understanding Cluster Headaches, although with a slightly different title in the US and the UK!) Unfortunately, aside from some brief descriptions and some journal articles, there is very little information out there about new daily persistent headache (NDPH). Hopefully by sharing my story here, I will especially be able to reach out to others with NDPH as they currently have no “home” on the internet.

Since it has been over 6 years from the start of my headache journey, I felt that perhaps now is the time to share my story in an attempt to offer help, support, and resources to others who are suffering. I plan to start at the beginning and post installments about my headache journey, and once I get the history caught up, I’ll obviously continue with my day-to-day life. I’d like to stress that headaches really are such a small part of who I am – the big picture of me includes so many other things – but since I started this blog expressly to discuss my headache journey, I won’t really be focusing much on the other things, except as they relate to my story! It seems like most of the time, I’m minimizing the role and impact that headaches have on my life, but this will be a place for me to focus entirely on that role and impact, and I’m actually looking forward to having a place to do that!

While it is merely a start, I’ve included some links that I hope are helpful. I’ve listed some of the major headache centers in the US, UK, and one in Singapore, and I’ve also created a links list of headache resources. I’m sure there are so many more links I can and hope to include, but this is just a start! For the time being, I’ve linked to headache centers as opposed to individual headache specialists, but as this blog grows and develops, I hope to include more resources, including individual physicians that specialize in headache. If you know of an excellent center, physician, or headache resource that’s not on my list, please leave a comment or send me an email. I will definitely consider all recommendations for inclusion on my list.

So I suppose that’s it for my welcome! Thanks again for stopping by, and I hope you find my story interesting and maybe even a little helpful! If you don’t suffer from headaches, then maybe reading my story will help you to better understand someone who does! Either way, I’m happy to be sharing this with you. Take care!