New Daily Persistent Headache Support Group

I am new to this, but I have been having headaches everyday for 5 months now. My doctor is telling me it's migraines, but it is every single day. I ran across NDPH just today. I have been taking Topamax for my epilepsy and migraines, but yesterday I added Cymbalta. When I searched these two drugs together this came up. Now I am wondering if this is closer to what is going on with me. This is miserable! Anyway, I'm in hopes maybe someone out there has some input? I have been to 3 neurologists. (depakote,lamictal,topamax) I have done IV infusions, demoral shots everything nothing works!!! I am going crazy!! I am only 28 yrs old and I am so run down and tired. Wishing I could figure this out!!

To help find out if you have NDPH you need to meet some criteria:

1.Headache for more than 3 months.

2.Headache is daily and unremitting from onset or from less than 3 days from onset

3.At least two of the following pain characteristics:

a.bilateral location

b.pressing/tightening (non-pulsating) quality

c.mild or moderate intensity

d.not aggravated by routine physical activity such as walking or climbing stairs

4.Both of the following:

a.no more than one of photophobia, phonophobia or mild nausea

b.neither moderate or severe nausea nor vomiting

5.Not attributed to another disorder

It would be great to hear your whole story!

Talk soon,

Jonathan

Hi Nicole, Welcome to the forums. I can sympathize with your situation. I have just turned 29 and have had my headache since May 12, 2006. At first I thought it was a migraine, but my imitrex didn't work on it. Then my primary doctor thought it was a tension headache. The meds he gave me for that didn't work either, though the narcotics did reduce the pain. When I got to a neurologist who specialized in headaches he diagnosed migraine the first time, until I hit the three month mark then it promptly got switched to NDPH. Now he is telling me that I have both NDPH and migraine on top of it. Apparently I have more migraine symptoms than most people with NDPH, but it isn't exactly like a migraine either. By now I don't really care what they call it, I just want it to hurt less.

A good article that talks about the different types of chronic daily headaches is here:

http://www.jaoa.org/cgi/content/full/105/4_suppl/23S

Whatever diagnosis ends up looking closest to your situation (there are a lot of gray areas like mine- NDPH with extra symptoms), you are welcome to be part of this forum. We understand what it is like to have a constant headache with no real explaination for why it is there and why it won't stop. We also know what it is like to have to be a guinea pig to find a medication that works. It seems like there is no predicting what will work for any given person, so we end up trying a LOT of different things.

I have taken Topamax and Cymbalta together (which maybe how you found this site, who knows). The topamax has reduced my pain some, the cymbalta didn't work for me and I had a lot of side effects, buy it must work for some people or my neuro wouldn't have tried it.

I hope some of this helps. Most of all, welcome to the forum. I think you will find a lot of people here who can relate to your situation.

Thanks for the posts! This has been a long weekend for me with these headaches. On Monday I plan to start hounding my Dr for more answers!!

I tried cymbalta for over a month before I knew it wasn't going to work. A lot of these meds take even longer than that to tell, so your doc may not have more answers to give you yet (doesn't hurt to ask though).

Do you have a neuro that you see regularly working on your case at this point? I know you mentioned that you have already seen three of them. I have one that I go to who specializes in headaches and I have to say that he has been really helpful even though he hasn't been able to cure me (not really his fault...NDPH is rather difficult). Some neuros can be really hard to work with though so it isn't always easy to find the right one.

I have just started seeing a new neurologist. He seems to be pretty good. I haven't formed a solid opinion yet. (I haven't seen him enough) My next appt is on the 17th of July I hope to have some good conversation then.

Welcome to the site! I am sorry that a headache is what brought you to us; however, you will find many here who totally understand the frustrations you are feeling! I agree w/Mary in that, you need a neurologist who specializes in headaches!

I hope you have a good appt. on July 17th and that your neurologist is willing to spend a great deal of time discussing all your questions and concerns and that when you leave, you will feel a peace about having this doctor on your case!!! Your doctor needs to be one who is willing to be in it for the long haul....one that won't give up when you face difficult days and meds that add to the frustrations!

I hope that this neuro proves to be a good one too, and that he takes the time to listen well. It may still take a lot of trial and error to get anywhere, but it helps a lot to have a neuro who will listen and take your input seriously.