I have spent the past two days sifting through thousands of comments here waiting for approval. If you are a subscriber of the blog or comment subscriber, I owe you an apology! All of the approved comments many have hit your email over the past two days…and I know there were many. So I am sorry that I clogged your inboxes, but I also know that some of the comments contained important information.
I don’t have a good excuse as to why I waited so long to sift through the spam comments and approve the good stuff. Will you accept the excuse that I had a headache? 🙂
Here is a comment that I thought was worth sharing with everyone.
“I’ve had NDPH for 5 1/2 years now – currently in the middle of treatment for Lyme. I wanted to post this recent article published by Dr. Todd Rozen. I think that, like myself, so many NDPHers’ headache began with this “thunderclap” type headache. I’d be interested in knowing if anyone has tried this calcium-channel blocker for the headache? If anyone has, or does try it and gets relief, please come back to post. As Bob H. has mentioned, it would be great to get a study going to discuss commonalities, treatments, etc. Several NDPHers, again like me, at some point during the headache course, have tested positive for Lyme and/or reported some sort of “strange rash.” I wonder how many with NDPH have been tested through a specialty lab for Lyme or other tic-borne illnesses? Here is the link to Dr. Rozen’s article:
Here is the link to the article by Dr. Rozen that discusses a treatment for NDPH with thunderclap onset. If you experienced a thunderclap onset of your headache, please take the time to go through this article: The Journal of Headache and Pain
As you probably know, I tested positive for Lyme and several coinfections about 4 years ago, 6 years after the onset of the headache. I was tested multiple times when I first had the headache, but the results were always negative. I mentioned to many of my neurologists that I had a strange rash and muscle pain in my legs, but they all dismissed it as unrelated. I don’t know for sure that it was Lyme all along, but I do know that the Lyme treatment gets rid of the head pain, at least for a while. I can typically go about 6-8 months without medication before the pain drives me back to treatment.
As for the thunderclap onset, I’m not entirely sure. I always described that first moment of onset as pain falling on me. However, it did come on all at once and it was the worst headache I ever experienced and that high level of pain (a 9 or 10) lasted for at least five days straight before lowering a little to maybe a 7 or 8 on the pain scale.
I am so thankful that I am not there anymore. I may not be where I would like to be, but at least I’m not there, in such desperate pain and shaking with fear. I guess I am accepting it all, to a degree.
Over the past 10 years, I’ve spent a lot of time screaming over what I’ve lost. It’s only recently that I’ve begun to move on from the mourning over the life I had.
Let’s try to put together something that’s good for ourselves, however small.
If you have tried the treatment presented in the study, please let us all know how it went below in the comments section. I promise to approve it right away!