Hi there! Welcome to the group. I feel (and I'm sure there are some numbers somewhere to back this up) that because NDPH is actually a new diagnosis for an old condition, so many people are either undiagnosed or misdiagnosed. I was misdiagnosed for the first 3 years despite seeing dozens of doctors and being on all the migraine forums (come to find out I needed to go to this one!). If you keep working down the migraine preventative list (there are hundreds of meds), similar to Topamax and gabapentin, you are bound to find something that will help you a little bit. There are only a handful of meds besides what doctors would use to treat migraine that have been shown helpful in some people.
Sometimes even a family doctor familiar with head pain can be better than an "expert" neuro. They are more willing to treat you as a person not just a chart if you know what I mean. I will go to my primary doctor with suggestions and he either agrees, wants to look into it more, or disagrees for a good reason. I also see a neuro more to consult every once in awhile though. More so because he keeps stats on NDPH patients though. He hasn't had any suggestions I can afford that I haven't tried.
So, don't give up hope yet! There is a lot out there to try and something you just need to be proactive. A way to be proactive without preaching to your doctor is to suggest a type of treatment (for example chiro, massage, physical therapy, Botox injections, occipital nerve block, etc), or a class of meds (antibiotics, steroids, muscle relaxers, beta blockers, anti depressant, anti seizure, ergot, triptan, etc) that you want to try. Then, you can work together to come up with a plan. That way you aren't saying "Give me X medication" and you don't walk away from an appointment without making some progress. I will keep going back to the doctor monthly until I am stabilized, even if they say they don't want to see me for 6 months or whatever, lol. Sometimes you really need to push for the right care but still be respectful.
I love your outlook and it is so great to hear about your family support. Are you ok financially? I can't imagine having to quit school/work. Thankfully I haven't come to that point yet however many days I have that I want to just give up. I got my NDPH halfway through my second year of college (engineering) and now am 1.5 years into my first job! When I look back I think of how far I have come. I am much more functional now.
Over time I found things that helped. Some little things (like knowing my limits for activities, improving my posture to relieve neck tension, getting a good nights sleep), and some bigger like some meds (everyone has different things that help them). I have just got used to the pain too. Its a part of my life and I've given up on it ever stopping, so if it does, that will be such a blessing. Everyone has different pain levels and thresholds. It is so hard to compare.
One thing-If you do decide to travel, please do your research. Sadly I have heard of a lot of people traveling for in patient treatment at a fancy headache clinic for example and they do great there, but then as soon as they get home they can't continue the same meds nor do they have the follow up care so they are right back where they started except with an empty wallet! Just an example...those types of things can turn out good too, but know what you are getting yourself into. So much can be found online now, like you finding this group which mostly has U.S. patients.
Best wishes and good luck. Hope to chat again with you soon.
