New Daily Persistent Headache Support Group

I was reading some of the older postings as well as the new ones and saw that lots of the women who have NDPH started when they were pregnant. And then I was thinking maybe it was a hormonal thing but it doesn't really explain why men get it. Has anyone talked to their Doc's about this? Jonathan.

Oh yeah! I've talked to LOTS of doc's about it! I did have CDH before pregnancy, but it was so mild that it wasn't interfering with much of anything. I pretty much could forget about the pain. I attended high school, played sports, went to college, etc. Then right after I delivered my daughter, I had a headache where it literally felt like my head was going to explode.

That's when my diagnosis changed to fit more of the NDPH standard, although I am unusual in that I did have chronic daily before. Anyway, I just thought there must be some connection, so I had my docs check hormone levels & all sorts of things, with everything coming back normal. I was pretty bummed.

I never planned on being a mother to an only child. Now if I get my headache under control, I'm too afraid to have another. My sister is afraid she'll be like me, as well, but she & her hubby still plan on having kids in the future. A few months after I delivered, my mom did break the news to me that my aunt & great grandmother had the same thing happen to them. Fortunately for them, the headaches randomly disappeared within a few years. Neither of them had another child after that, though. With my great grandmother it happened with her second child. It's been 3 1/2 years since I delivered my daughter. I'm functioning ok with meds, but I still have NDPH.

When I google it, I don't find many studies on pregnancy causing NDPH or CDH, but there is the statistic that varies in percentages, that shows that for most women who suffer from migraines, their migraines tend to go away during pregnancy, especially during the 2nd & 3rd trimesters because of the steady levels of hormones. For a smaller percentage of women, however, the migranes are worse: http://www.mayoclinic.com/health/migraines-and-pregnancy/ AN01364

I'm sure the huge hormonal decrease that occurs postpartum or the hormonal increase that occurs during pregnancy is enough to throw a woman into NDPH. Although, I've never had a doctor confirm that as a cause for it. They're pretty much baffled when I ask them questions about it.

i also got the head aches IMMEDIATELY after delivery. I mean like hrs after.

Thanks memmerrill and newmommy3! I was just wondering but it is very interesting!

newmommy3, did you happen to have an epidural during your delivery? I did. My first neurologist told me that mine is not a lingering spinal headache, but I'm always curious to know if there may be a connection there.

And I felt miserable, headache-wise, in the hospital after I delivered, but the explosion feeling didn't occur until the day we came home from the hospital, which was 3 days postpartum. I was in the tub, trying to relax. Well, at least I don't feel that bad anymore!

Post edited by: memmerrill, at: 04/12/2008 13:38

I have wondered about that too, but like the rest of you can't find much of any research about it. We do seem to have a terribly disproportionate number of ladies who got their headaches around the time they had babies.

My headache is still a mystery (guess I am hanging out with the men here) but there sure seems to be a connection. Memmerrill when did your original CDH start? I am wondering if they could have been hormone related too. Who knows? I am not sure medical science really understands hormones all that well (sort of like the way the brain works...).

The post-partum/post-epidural headaches that the general population can experience are easily fixed with a blood-patch and usually the OB and Anesthesiologist will concur together and arrange for that....it brings instant relief. The NDPH kind of headache post-partum that you are describing, I would tend to think the shift in hormones could cause it. Ya know, as I've mentioned before, my 11 yr. old daughter is at "that age" of changes...rapid ones at that...but she has yet to start her cycle. We kept thinking her NDPH was a hormonal link too, but the doctor doesn't believe it is, since it's been nearly 6 months and still waiting to see if it's hormonally induced. (I just think if your going to get it, you will....and there may never be an explanation.) I do think it is interesting that there was a family link with memmerrill 's family though!!! (and that they all appeared after delivery.....and lasted long-term).

While blood patches are highly effective in relieving spinal headaches, their effectiveness is not 100%. I have seen this myself in a friend who had a spinal tap to test her CSF pressure & ended up with a "spinal headache." Her blood patch did nothing & she was forced to wait it out in a dark room.

I know there's no answer as to what brings on NDPH, but I could see, theoretically, someone getting a spinal headache, then overcoming that, but developing NDPH afterwards & having a hard time breaking the headache cycle. Spinal headaches are terrible, from what I understand.

A few months after delivering my daughter, I collaborated with a professor in the nursing department at Brigham Young Univ. who informed me that although a spinal headache can linger for months, it is extremely rare. I was upset because at the time, just days after delivery, my OB/GYN office didn't even think spinal headache was possible, even though I had an increased headache from the time I delivered. I thought that maybe I had the headache explosion at home from being up on my feet in an elevated position more often.

Well, their reasoning was that it had been too many days since the epidural for me to still have a spinal headache. It frustrated me that they wouldn't even consider it or anything else for that matter! It took me a few weeks in the beginning to be able to convince my doc just how much pain I was in. At first their "kind" nurse told me that I probably just needed to rest. Ha ha! Wouldn't that be nice if that's all it took! Incidentally, I did have a different feel to my headache for the first 3 months. Oh well, that was all a few years ago!

I developed CDH at the age of 15, over 10 years ago. Prior to that, I was prone to headaches beginning at age 10 1/2 or 11 related to car rides, weather changes, chemical smells, etc. that were sometimes accompanied by nausea and always accompanied by a degree of photophobia. I remember my mom never gave me any meds for it, but they weren't severe enough to warrant that anyway, and I never saw a doc for it until they became daily at the age of 15. I didn't reach menarche until the age of 12, so it began around puberty, but not on the exact day of menarche.

When I was 15, my pediatrician diagnosed me with allergies and stated that my chronic headaches were caused by that. My pain was always in my forehead, which the pediatrician said was because my sinuses were likely inflamed. It was the springtime when it all began & I did end up testing positive for allergies, so we went along with it. But after the rounds of allergy meds, nasal sprays, allergy shots & no headache improvement, he ordered an x-ray of my head. From what I remember, this showed that my sinuses were healthy & he then prescribed Tylenol #3, which I hated taking. It made me nauseated & sleepy. Then I'd wake up with an even worse headache. Naps do that to me. So, we chucked that stuff & I just took ibuprofen when I couldn't tolerate it anymore, which was rare back then. And the stuff worked back then, too! From then on, I never saw another doc for headache until I delivered my daughter. I hardly even thought about the headaches.

By the way, guys, I hope I don't sound harsh when I talk about this stuff. Sharing the headache aspect of my delivery is a touchy subject for me, if you can't tell. I'll try to be more pleasant. I do have a wonderful daughter who I love to pieces & we have a very happy home with me, her & her daddy. The headache part of my delivery was, more or less, an absolute nightmare & it is still hard for me to revisit that experience to this day. Developing CDH as a teenager is a little tough to talk about, but to a lesser degree. It was tough, but not as bad.

I didn't think you sounded harsh (well, maybe a little at the nurse who wanted you to rest...but we have all run into people who think there is nothing really wrong with us...they are aggravating). It is hard in your case that a happy event (birth of a daughter) triggers such a negative event (stupid headache).

I think your theory of having a spinal headache that eventually fades and has NDPH take its place may be right on, particularly since you found the headache changed in quality after a few months. I am only guessing too of course, and have never done the spinal thing at all (never really want to either). I know it is rare to have it be as bad as yours, but even if it goes smoothly it still sounds unpleasant to me.