I came down with NDPH in April of 2001, after recovering from a virus. I keep hoping that I will get another virus that will reverse the trigger of the first one. No such luck yet.

I have tried a lot of stuff to treat it.....the only thing that has helped is effexor. Right now I'm trying Depakote....it doesn't work, and it makes me stupid (memory problems - I can't remember people's names)

I was wondering if anybody has tried having their heart checked for a leaky valve. I had a cousin and a guy at my church mention to me that they know people who were cured of chronic daily headache (not sure if it's NDPH) by patching up a leaky heart valve. Apparently, the dirty de-oxygenated blood was leaking into the clean oxygenated blood and this mixed blood was going up to the brain and causing headaches. I'm going to ask my neurologist if I can do a test. Let me know if any of you have heard of this or taken a test.

Very sorry to read that you also have it. It is a very miserable condition. How has effexor helped you? Did it help only for a little while or did it help consistently?

I have heard of heart problems causing headaches, but only with migraines:

http://news.bbc.co.uk/2/hi/health/4180455.stm

Not sure if that's what you're cousin and the guy at the church were talking about, but it's still worth looking into. If you're able to get it done, obviously let us know what you find out.

I'm sorry to hear about the headaches. I too have NDPH and it will be going on six years on December 20th (sad that I remember the day this started. I actually went to my neurologist at Jefferson yesterday and he sent me for an EKG maybe that is what hes looking for. I'm hoping for a cure too. I also took depakote and I posted before that it was horrible for me too with the memory. I'm actually not taking anything and am just dealing with the pain because nothing seems to take the pain away for me and I have all the side-effects of the medicine if I take them too. Keep in touch and do not lose hope its the worst thing you can do. Also I'm going to start trying biofeedback. Maybe try that for the pain. I'll let you know how it works out.

I agree with Jasmine all of the medication I have taken up until now has given me such horrible side effects with very little pain relief that I stopped taking them. I also tried biofeedback for 4 months but it did not work for me, I sure hope it works for you Jasmine. Does anyone have TMD or TMJ?

Andrew, the effexor did consistently help a little bit. I'm off of it now, because I wanted to try some other meds one at a time. You should be aware of getting off effexor. It's a pain in the butt. You have to do it very gradually or you'll feel terrible. There's lots of info on the web about this problem. I also tried a drug similar to it called Cymbalta. They're both serotonin and norepinephrine reuptake inhibitors (SSNRI). However, Cymbalta didn't seem to work for me.

I'm really curious about the heart problem possibility. Jasmine, you'll have to let us know about the results of the EKG. As far as biofeedback, like tdeannie, I tried it. It didn't help me at all, to be honest (but I only did it a couple of times).

Like your Depakote, the Topamax for me has been bad with memory loss - my name-recall has been bad, as has some short-term memory. It was worse when I was on Lyrica, though. That stuff was brutal with my memory.

If/when you find out anything about that test with the heart you were telling us about, make sure to let us know Thanks again for joining us. We're in the process of getting a support group put up on the main page (like the Breast Cancer, Bipolar Groups, etc). just so you know!

I've tried self-hypnosis with some pain relief as a result. Regular exercise and relaxation seems to make the pain go away for a while as well.

A week ago I went to Prague and partied with my friends non-stop for five days. And instead of receiving hangover headaches like my buddies, I found my headache actually lessen in intensity. Truly a weird feeling. I went to a pretty rough concert to top things off, and found myself feeling almost free of NDPH that same day.

To sum things up: sleep deprivation, alcohol and crowd fighting helped me more than months of medication and "treatments". I'm really starting to wonder if drugs are the right way to go, considering all the side effects we seem to have collectively experienced.

NDPH is different according to everything I read it is categorized as not worsening due to exercise. I couldn't go running or anything but walking does help. I think since most of us have pain all the time its hard for us to get our bodies to remember what its like no to be in pain. But I think that I do feel better when I'm socializing or out at some social event.

As I've said before I have tried some alternate therapies and haven't found anything to date that makes it better. I have found some things that make the vertigo better does anyone else have vertigo?

But, re: Magnus's idea, I'm not sure. I don't know if I can exercise like I used to. Prior to all of this starting, I was in quite good shape, now I could barely run a 1/4 mile if I had to, if I could even run that, which I actually doubt. I do pushups and stuff like that in my apartment, and sometimes it makes me feel better, sometimes I think it makes me feel worse, so, I just don't know. When the weather gets a little nicer out, I'm going to try and run a little to see how that makes me feel, though I think it may make my stomach a little sick.

I've tried acupuncture and chiropractors, and neither of them worked.

Ryan: How much effexor did you take? and how well did it work? also, did your neurologist ever say anything to you about what the recovery rate for this is?