My heart goes out to your daughter and also to you as a mother. I know that my mom and dad have felt the same way - they tell me that they want to take my pain away all the time. I wouldn't want anyone to have to deal with this pain! As hard as it is for everyone involved, just do your best to keep fighting.

Kelly has had a rough week. She has always played sports, and wants to continue to. She played volleyball these last 3 months, which was tough, but she was determined to continue. This week was tryouts for Lacrosse, which she played varsity last year (as a fresman). Tryouts were hard for her, and it looked like she wouldn't make the team after the first two days. On the third day she gave it her all, and she and another girl collided heads. What unfortunate luck for Kelly to get smacked in the head. Of course, she felt worse than ever, and we worried that she had a slight concussion. She did make the team,

but will have to decide whether she can continue. She really hopes to continue, for playing a sport has always been an important part of her life, and pretty much the only social thing that she does.

Best of luck to you. I am glad you you have loved ones to help and support you.

Just want to say sorry that your daughter has been diagnosed. How long has she been on the topamax and at what dosage is she on now? I'm currently on Topamax, 125mg, and it works for me a little, in that I had constant nausea with my headaches as well, but that is mostly gone now, and my headaches are reduced a little too I believe, and that started happening at around 100mg, though it took around 5 weeks I think at 125 for the nausea to go mostly go away to the point where I no longer needed to take anti-nausea medicine to control it.

Was your daughter sick at all when the headaches started? or did she feel strange in the days leading up to them or did they just start out of the blue?

But just a diagnose sadly offers little relief. I'm 18 years old and have had NDPH for about 16 months now. I've been eating a drug called Tryptizol, 40 mg, for some months now. It has done nothing. Soon I will start eating Mirtazapin, also called Remeron, to see if that works.

It's a relief to see some other people going through the same thing. There is always support in numbers.

A quick survey - does anyone here with NDPH have hyperflexible joints? (joints that bend abnormally, swan-like neck) In a small study I found at pubmed.gov, researchers pointed at the possibility of a connection between hyperflexible joints and NDPH. For me, it's spot on - would be interesting to hear from the rest of you.

Take care,

Magnus,

Sweden

Hi all

I have had NDPH for 4.5 years now......developed a headache out of the blue in 2002..was hospitalised for 3 weeks for tests etc....as never had headache before and it was severe!

After over a year of various meds/tests and appointments I was diagnosed with NDPH......

I have had to give up work..........and basically lead a very different life now.......

its been hard dealing with it...and my only comfort is that at least its not a terminal illness.....

The bst treatmnet so far has been DHE....which I have had twice now ...both week long programmes. It gets my pain down to a 2 and jsut a mild background headache but the headaches evetually creep back up to pain level sof 5 and above..sometimes an 8!

regards

Ruby:

Sorry to hear both of you have it.

Magnus: What do you mean by "swan-like neck?" I've seen that study on hyper-mobility, i assume it's done by a doctor Todd Rozen, he's basically the only doctor who consistently publishes on NDPH. He also found a link recently with Tumor Necrosis Form, Factor, something with an F, in the spinal fluid and people with Chronic Daily Headaches, including NDPH, TNF is a known inflammatory agent, causes types of athritis I believe. They don't know the connection between it, and as near as I can tell, anti-TNF drugs do not help the headaches, but it's something else to look into. Have any drugs worked at all for you? Has your neurologist told you what his estimates are at recovery rates? I'm always intersted to hear those, obvisouly, as I want to get better, but because it is so rare, I get the sense that different neurologists can have much different experiences.

My neck does not appear to be hyper flexible, though I can't lean back and have my back and head touch the wall at the same time, without looking up, as my neck arches forward a little there, bad posture from when I was younger and used to hunch over I imagine. Next time I see my neurologist though I'm going to ask him about that as I've been meaning to. Actually, i see two different ones, I'll ask them both, one I see on monday, and I'll see what he says. Not sure if they can tell, or if that's something that a physical therapist can tell.

ruby: Sorry you had to give up work. I really hope that doesn't have to happen to me, especially considering I owe 180K in student loans! have you asked at all for home DHE shots to see if that might help you to break your headaches when they get real bad?

Did anyone here feel sick prior to the headache? or strange? or stressed? for me, I had just had a bad breakup, with some residual things causing some stress, was waiting for my bar results (which I got 3 days before the headache started). WHen I got the bar results, on fri. nov. 3, i didn't feel right that night, but I passed, so of course I was going to go out, just went to see a movie, but still didn't feel right the next two days, and then on monday, when I woke up, had a headache and nausea, 24/7 each. The topamax has gotten rid of the nausea, thankfully, but still have the headache, and just dearly want it to go away. I busted my butt through 3 years of law school, the bar, then pass, and my first day at work as a licensed attorney, and I get a rare disorder that basically has no cure, cruel irony.

My doctors used DHE in my IV when i was in the hospital, and it helped a lot... it's now one of my "rescue meds" when my pain reaches above a 6-ish... I just hate doing the injection. I've only had to do it once since the hospital (I probably could have used it more but I've just tried to sleep off the pain), and I felt the injection the next day (i was told to do it in the thigh, and it HURTS like a ... ).

What kind of work had you been doing? I am sorry that you had to give it up. I almost had to take a semester (or more) off from college to deal with the NDPH, but somehow pushed through with lots of extensions on assignments and whatnot. I just really wanted to graduate with my boyfriend and our friends. I have put off grad school for a little bit and am working right now, but it isn't easy. I just learned this summer that I can't sit around and do nothing... the depression aspect of NDPH catches up with me, as I'm sure you and the others who have responded can identify with.

Are you on any daily meds for your NDPH? Any "rescue meds" for when your pain is really climbing? I'm on Cymbalta and Topamax daily (and Provigil to help me stay awake/alert during the day).

Thanks so much for responding, I'm so thankful that people have responded and joined in on our little NDPH support session... it's comforting that I'm not alone.

It's too bad that I couldn't go back and change the topic name of my original post to something about NDPH, but I am going to poke around the site and see if I can start a support group on the site or something... obviously it's not going to be as large as the bipolar or breast cancer ones, but it would probably be a bit easier to organize things we've discussed/questions we have for one another/suggestions/etc. I'll see what I can do Thanks again to everyone for sharing.