New Daily Persistent Headache Support Group

For those of you who have had the headache for a long-term period of time, has the location of the pain ever moved? Like did it start out in your temples and then after a few years appear somewhere else? For the last two years (2 years tomorrow) mine has been in the front of my head, in the very center and never changed, but in the last week or so I've been getting a sharper pain in the back of my head as well. I'm trying to figure out if its just from the nerve blocks I had back there about 2 weeks ago, or from all the studying I've been doing, or if its really a new genuine pain. Any thoughts?

My hubby's pain has always stayed in the same location, for over 4 years now. It travels when the pain gets really bad but the main spot is always the starting point.

Mine hasn't moved, but I haven't had any nerve blocks or anything either so maybe those are complicating things.

Mine changes daily. It began in my right temple in April 09. It was throbbing and pulsing. Moved to cheek and temple, then moved to left side and now switches daily sometimes I don't have a H.A, but i always have pressure in my face. I also sometime get a tension headache. Tightening on both sides of the head.. Very annoying not know what you are dealing with.

Mine moves around but it typically right sided. Often it's in or around my eye but also goes into my forehead and check/jaw. It's also almost always at the base of the right side of my skull and the right side of my neck/shoulder hurt. I think the longer we have the headache(s) (I'm almost at two years two) more and more of our muscles can go into spasm and also the nerves become irritated which can change the location of the pain. This is just my theory - I've got nothing to back it up other than that's how I interpret my own pain.

Mine has moved all over the place. When I had meningitis it was the whole head and definitely my neck since that's basically where meningitis lives. When it stopped being meningitis it parked itself in my "third eye" for months and months and then slowly moved out to my temples. And now strangely its still in my temples and now my cheeks, like a face ache. Sometimes I think that's all the Topamax will let through.

Mine has moved as well, well kind of. It is always above my eyes in my forehead. When the pain gets bad, spikes or has been consistently bad for a few days straight it spread to my whole eye socket, down my cheeks and sometimes down my neck. It is very much a whole face ache.

About a year ago (1.5 years into my headache) I started getting an ache in the back of my head/neck on top of the normal place. This is almost like a second headache. I was sent to a physio with expertise in back and neck problems and he said there was no structural issue causing the back of the head pain and it was connected to the other pain most likely. I have also had occipital nerve blocks and they help the back of the head pain somewhat. The nerve blocks were after the start of the back of head pain so didn't cause it in my case.

Interesting to hear that many of you also speak of the face pain. Am I the only on the NDPH boards where it goes away each day then comes back at the same time? Most or all of you are always in pain, correct?

I feel like I'm sort of hanging out with the right crowd ..since my headaches aren't migraines but I still think I'm in the mystery diagnosis category.

I'm always in pain, the intensity changes or can 'spike' but its always there and hangs out around a 6 or 7 out of 10 most days up to an 8 or 9 about once a week.

Happy Thanksgiving everyone!

I'm always in pain too, except for a break while I was on a ketamine infusion. My pain level does vary throughout the day and day to day depending on a number of factors. It tends to get worse as the day goes on, this happens everyday without fail.

I have seen a couple of other people say they have pain free time every day or most days. Sometimes it's with medication help but there could be others that just have a similar natural pattern to you, dizzy. My understanding is that you don't have to be in constant pain to have NDPH.

lilhannon - I also have fairly high pain levels most of the time too, yours sound very similar to mine. Although I often get runs of 9/10 and 10/10 for a week or two when I'm unlucky.