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joanna524
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Thanks so much, Nadina. "New Daily Persistent Headache (NDPH)" would probably be good. I submitted a request for a general headache or specific NDPH support group, as well. I don't know how having one of those formed actually works, but I figured it's worth a try. If not, at least to have this post to have a more appropriate name would be SO helpful. Thanks again  |
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Nadina
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You're more than welcome, Joanna. Having a support group formed consists mainly of the administrators of the site actually building one. I think the idea of starting a NDPH group is great, especially since - unfortunately - there is already a group of people here that could benefit from it and could also bring valuable contributions (such as yourself). We'll have to wait to hear back from the admins. |
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Magnus
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Hey, thanks for welcoming me to this community. Yes, I was talking about the study by Rozen, found here: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16961783&query_hl=1&itool=pubmed_docsum It refers to the Beighton score, which can be found here: http://www.hypermobility.org/beighton.php I managed to score a 6/9. You can test yourself to see if you have hypermobility. The swan-like neck I talked about is generally seen amongst people with hypermobility. A quite long neck, leaning forward that is. I have been told, just like you, that I have bad posture. Quite often I find myself hunching forward, both with body as well as neck. Personally I believe it has more to do with hypermobility than what some parents taught me a decade ago. |
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andwoo
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Hmm . . . maybe that's what I have. I have no idea how to test whether or not my knee bends back or my elbow does since the drawings are not that clear. I know that when I stand straight, my knees go in a little. But, my two thumbs do bend back to touch my forearm, and my one pinky bends back, so I have at least a 3. Great . . . guess that means this won't be going away for me. Did any of your neurologists ever give you a recovery rate? |
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Magnus
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Well, my neurologist refered to the only reasonably large study made on NDPH, by Li and Rozen. However, now that I try to find any figures about recovery rates, I can't. My neurologist said that 80% of the participants in the study had recovered at the end of the study. But perhaps that figure was nothing but fiction, who knows... |
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andwoo
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Well, in that study, there is no mention of recovery rates. That 80% was from the first study where the term was coined probably, by Vanast. 86% of males, and 83% of females, or something like that, it's small numbers of people, only something like 53 in total in the whole study, recovered after 2 years, but that was in 1986, and the neurologists that I've spoken to think that the condition is more hetergeneous than first thought, so who knows? |
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andwoo
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I guess my question was more along the lines of what's your neurologists experience with recovery rates, but I guess she or he doesn't really know. |
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Magnus
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Probably not. He works at one of the largest centras for headache in Sweden, but still has only seen 16 people with NDPH. I believe I found the study he refered to. It was done in 1986, and was later doubted by other scientists. So I guess the cruel truth is that we just don't know. If anyone suddenly wakes up free of headache, make sure to let us others know. I guess we all need a little light at the end of the tunnel. |
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andwoo
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Gotcha. I had another appointment with the neurologist at the headache center near me. It's smaller than my primary neurologist, which is at the Jefferson Headache Center, one of the best in the US, and at this smaller center, the neuro said he had not had any patients with NDPH get better, and he has not had too many patients with it either. On another NDPH forum, a woman on there has now had it twice! she had it once a few years ago, for about 4 months, with pain, then 6 or so months of a strange head feeling, then it went away. She now has it again, oddly enough, she developed it on the same day as me! And, where she works, two people have also had it, or one had it for 2.5 years and it went away, and another had an uncle that had it for 7 months and it went away, though the latter was sick prior to the headache. So, there's some hope. Also, in that group, one person went in for weeklong IV treatment, and had the headache broken, though he now has headaches more frequently. He also thought I may have a spinal fluid leak, since I had a somewhat strange response when I had my spinal tap, and then the subsequent blood patch to get rid of the post spinal tap headache that I got, even though my ST showed normal spinal pressure. Apparently, some neurologists think you can still have small tears in the spinal cord somewhere even though you have normal pressure, so I need to get a new test done eventually which requires a new spinal tap then 3 days of getting the results tested to see if I have a leak, not sure how it works, but need to figure out a schedule to get it done since my work doesn't know about my condition yet, so if I get another post ST headache, and those are bad, you can't do anything with them, since if you stand up, you get real bad and need to lie down, I'll need like a week off. |
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joanna524
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andwoo wrote: so if I get another post ST headache, and those are bad, you can't do anything with them, since if you stand up, you get real bad and need to lie down, I'll need like a week off. When I was at Jefferson they did a spinal tap on me, I believe it was to rule out any spinal fluid leaks. It's hard to remember. I got a horrible post-ST headache (of course, on top of the normal one I have), but then they put me on a steroid drip to counteract the post-ST headache. We actually think that the steroid was quite helpful in knocking down my regular NDPH headache, which was really interesting... I woke up a little while after getting the steroid and felt WONDERFUL, basically a level 0-1. I'd definitely mention having a steroid after your spinal. joanna |
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