Frustration when your new neuro says well your headache isn t new so it s not...

%d comments
  • New refers to it started suddenly that you can actually tell the date it started not like someone who has migraines that became frequent and then constant.was he a headache specialist? so disheartening for you xxx

  • I'd question the experience of your neurologist.

    As others have said the 'new' refers to starting where there's no prior history of headaches in a patient.

    Change your neurologist to a headache specialist with good experience of NDPH.......

    Don't lose heart. X G

    In the U.K., Botox is used for NDPH but only after a good while and after preventatives haven't helped.

  • If it's not NDPH, then what is his/her argument against Botox? Your doc sounds at worst mistaken and at best confused. Frustrating.

    More importantly, regardless of the semantics of your specific diagnosis, the discussion certainly doesn't begin and end with Botox for ANY headache patient.

  • I had a history of combo migraine/cluster/tension headaches since I was a kid and was diagnosed with NDPH 2.5 years ago when this "new" different headache started and didn't go away and I still have the other headaches come and go as well. My Neuro is a also headache specialist and he says the "new" refers to it being a new kind of headache. He has suggested Botox many times as there is no real treatment for NDPH, they can only try migraine treatments. I would try a different neuro, find one who specializes in headaches, see if you can find one with experience with NDPH. I love my dr, I was diagnosed the first time he saw me, within 2 weeks of it starting, he knew exactly what was going on.

  • Ugh, how frustrating. I find myself changing neurologists about every three or so years, because they eventually start to get the mindset of "well you hold down a full time job and function like a normal person so how bad could this really be?" and stop listening to what I'm actually saying. Don't settle. I settled for the first 10 years of the headache and got nothing done.

  • I'm going on 7 years of a constant headache, nothing I have tried has helped at all. There are no headache specialists in my area so I'm thinking it's time to travel to one of the big headache clinics. For some reason none of the neurologists (3 of them) that I have seen will dx me with ndph, they all want to call it chronic migraine even though I fit all the criteria for ndph.

  • I've been diagnosed with NPDH and I've had Botox twice. Maybe you could find a new neurologist

  • Thank you all. It's nice to have a group of people that understand this frustration. This neuro is one of the most experienced in my area, and he seems to be well studied in migraine treatment but NDPH seemed a little foreign to him and he questioned why I thought I had it. Well, I know I do. I meet ALL the criteria. There are no headache specialists in my area, so inevitably I will have to travel to find someone else that has some experience with ndph, I'm just so worried that I will be disappointed again (like so many other doctors visits). No treatment I have tried has helped this constant headache x 7 years, which I know is like the definition of ndph; however, I do think the Botox has helped decrease the number of times the headache increases in intensity to the point where I take a migraine med. But having the constant pain 24/7 with no relief is (as you all well know) so difficult to deal with, psychologically, emotionally, physically, and spiritually. My previous neuro gave me Naprosyn, which I have been taking daily, and it does little to nothing but makes me feel like I'm doing something that *might* help. When I told the new neuro this he simple said to quit taking it. I asked if there was anything else I could try for the daily pain, and he just told me to stop taking the Naprosyn. Thanks a lot dude.

  • Right! All ndph people eventually do Botox. I'm not sure where he got his info.

  • I have been getting botox for years. Botox is for 15 or more per month. Pretty sure a headache that never goes away qualifies! So sorry.

  • I understand your frustration. Botox didn't help me. I take a lot of drugs. The headache pain for me is severe everyday. Sept 25, 2012 they started. Why? Noone knows. I'm on SSDI. I was a lawyer. I miss it terribly. I have no life.

  • So sorry! I have a constant level 3-5 so I can function and luckily I work from home. The not knowing why we have a headache I think is the most frustrating, and the fact that no one knows what to do with us.

  • Yeah, no treatment. I'm on so many and I get photophobia too. It's terrible. I miss my life.

  • Sorry, kind of funny that this neuro said this to you. Did he just graduate?? Lol what an idiot!

  • No, he's old and been around forever. I was dumbfounded when he said it but then didn't want to hurt his male ego by explaining what ndph is.... Something he really should be well versed in.

  • Xxxxxxx Yzzzzzz I travel to Denver (about 4 hours from where I live) every 3months now for my headache checkups... switching was definitely worth it, we have one Neurologist (although I think she left now or there is another one or something) because we live in a small-ish area and I HATED her, she implied many rude things to me (classic "well maybe it's cause of stress" when clearly it's not stress related because the only stress I ever had before my headache was a back injury from years ago... the only stress I have now IS my headache you know?) But anyway she was a b*tch and was always on her cellphone texting, chewing gum super loud, generally being unprofessional... (when a teenage girl says you are on your phone to much, it's probably true, lol) So we went to Denver Children's and it was the best decision we could've made... I see Angelina Cohler and she is the most amazing person and has really helped me emotionally with accepting my situation and trying to move forward and make the best of my life... And although I still have the headache and there aren't any more treatments left, I am ok with that because she has convinced me that I am capable of anything I want in life, I just might have to go about it a different way... I had given up on finishing the GED and going to college and ever having a job that wasn't a desk job that kept me inside all day, and somehow I am now finally looking forward to finishing the GED and joining the Anthropology course next fall, which would put me only a year behind where I was supposed to be... I cried actual tears of joy when she explained to me that it wasn't hopeless and that even with my pain I can make something amazing out of my life, and here I am planning on studying to be an Archeologist, which I never would've thought possible without her pushing me (and my family) to see that my life has not, in fact, ended... anyway that was long and rambly but my point is that hopefully by going out of your way to go somewhere maybe a little inconvenient, you might find your "Angelina" who helps you, either to get better physically or emotionally :) we all have a shitty situation to have to live in, but I do believe now that although it's harder for us than most, we can all get to a point where we live, not a normal life, but a fulfilling and happy one :)

  • Xxxxxxx Yzzzzzz, I hear you. I have a strong belief that God is in control, and although he doesn't wish any of us to suffer like we do, I know and I trust that he is with me. Some days are more frustrating than others, but I also know things could be SO much worse. I have a great job that I do from home. I can function well 95% of the time. Most people would never know I am in constant pain. For me, it's a balance between being ok living like this, and also wanting to make sure I do what I can to be an advocate for myself. Being from a smaller town with no headache specialist is frustrating because the doctors really don't know what to do with you. I definitely will need to travel to find someone knowledgable in NDPH.

  • You'll get used to it Kristen Hillyer, and find that you'll often have stand up to your doctor's advice & conclusions My own neuro-headache specialist was such an arrogant hearltless ignoramus! I definitively don't care about "hurting his male ego" any more, IN fact, I've just given up on him altogether after 18 months. You are right: do your own research and be your own advocate. Neuro's are clueless about ndph, often hardly even bothering to look for the possible cause....instead, they just put every patient tru the same absurb protocol, clearly designed just to "numb" the pain at best, not to cure, and usually with negative or neutral results,. Occasionally some people do seem to find some relief tru the neuro's approach, but it' always partial it seems, never COMPLETE relief (and often temporary, too, as ndph has a devilish ability to become resistant to most drugs). It's long dreary path to go down and I wish you the best of luck... you're strong. I just passed my two year anniversary & it feels like an eternity already! insane that people have to sufffer for so long, and that so little is known or done about this horrid ailment.