About Me

amy Thank you for visiting. I’m sorry that you have a need to be here, but I am glad you found me.

I’m Amy. I’m a mom of three beautiful girls. I’m a freelance writer.  I’m an NDPH sufferer, and have been for almost 8 years.

The purpose of this blog is to share information, as well as my own personal struggle with New Daily Persistent Headache. I wrote a short article a few years back on HubPages and the response has been overwhelming. People contact me regularly to discuss their journey, find help or treatment ideas  or to offer me possible solutions. I’ve decided to keep a more careful record of the responses I’ve received, and I will be sharing them here.

If you or a loved one suffers from NDPH and would like to share your story or are in need of some support (I’m a terrific cheerleader), please contact me.  Although NDPH is still a daily challenge for me, I am optimistic. I want to enjoy my life and I refuse to let this stop me.

Wishing you a pain free day –

Amy

 


Comments

About Me — 67 Comments

  1. Amy,

    Like you, obviously I have NDPH…I guess. It seems it’s such a vague diagnosis that I’m not even sure the doctors should be able to call it anything. Anyway, I just know I got a sinus infection back in October and the associated headache started in November. Sinus surgery in March didn’t clear it up, and from there it’s been a strange a lonely trip. Trying to explain this, understand it, keep up at work, have a social life, all the while being single. I do give myself credit for going on, but at times I feel just so spent.

    Anyway, knowing there are others out there is a help.

    • Please give yourself extra credit for going on through this – because many people cannot continue working with the pain, being social and pretending (sort of) that everything is okay. It’s a constant struggle just to get through the day sometimes and I know that “spent” feeling very well.
      You are not alone.

    • hi amy,

      my name is bassel from Lebanon(beirut) and i am an NDPH sufferer since 15 yers. the headache pain started with flu when i was 18 and never stopped. it is a long sad story with this pain, and i think in our case we need to strong and to adapt to this destiy.
      note that i changed my studies from general medecine to an easier major after competeing the first 3 years due to headache;i changed all my life due to my pain. now i am married with a little daughter and i admit that is hard mission to bring forward our lives with this pain because it is a not famigliar pain and noone can undestand what you are feeling.

      after 8 years of stopping medications , i started recently with an antibiotic treatment for 3 months course based on study showing that my NDPH is infectuous and it could have positive results with antibiotic(doxycycline). 15 years ago i started all type of therapies and medications and withount any improvement and till now i don’t know if there is a cure for this sad story, and in the same time i keep thinking how will i feel if one day the pain disappear. maybe i will fly!!

      regards and thanks for your support.

      bassel

      • Dear Bassel, my daughter is having NDPH for 3 years now. Her headache started one day and is still going on. All sorts of medications and therapies done. I just read your antibiotic treatment. I am wondering whether this has been helpful for you. Hope to hear from your.

        Kind regards,
        Anita

  2. Hi Amy I don’t know why it has taken me so long but I have just stumbled across your posts and felt that I wanted to make contact. My little blessing started on 31st March 2008 and has been with me every day since. Like you the intensity varies but I am currently ten days into a quite severe bout. I have always considered myself to be a strong and independent person but reading your posts has had me sitting here saying yes out loud to each event you describe. Michael described it as a lonely trip and I couldnt agree more however as of now it feels a little less lonely. This condition has just about finished my career as a detective in London and whilst I know it is real I cannot help but feel like a fraud and that I should pull myself together. Thank you for making the effort to share your experience it really has given me a lift.

  3. Hi Pete,

    I’m so glad that this made you feel a little less alone. Your comment really struck me – that you feel like a fraud and like you should just get it together. I feel that way often too, but had never really thought it through.
    I think because our pain is invisible to the rest of the world, because most people can’t understand how we can function at all with this type of headache, I worry about what people think. I imagine they think I am being dramatic or lazy. I feel like I must somehow be responsible.
    I hope that your pain eases up soon. Thank you so much for taking the time to comment.

  4. Pete and Amy,

    I posted on MDJunction about doing something as a group; creating a web site, brochure, SOMETHING to make this more tangible for people. In trying to explain this to my boss, who’s been really understanding, I feel like I’m making it up as there’s just no information I can provide other than a few things on the web. If you’d like to try to do something, write me at volmad98@gmail.com

    Michael

    • Thanks Michael – I completely understand your frustration and will contact you directly. It would be great to have better information available to people about NDPH.

  5. I smell cow fecal matter. NDPH generally takes down young people and I fear that it is another sinister method that our elite friends in the parallel government are ensuring that people are not in a healthy, alert condition to oppose them. Maybe it was brought on by aspartame, monosodium glutamate or a childhood vaccination or maybe it was one of the other thousands of methods they are using to make us intentionally unhealthy. Perhaps we should be happy that we weren’t struck with one of their cancer inducing chemical combinations found in cosmetics, GM foods or tap water. A mistake people make is to think that our unelected leaders are not capable of such atrocities, but I ask you to think for yourself and consider why ‘they’ would consider us, the ‘bottom-feeders’ any different to the peasants of any other country when it comes to their agenda. The truth is that we are talking about psychopathic entities who’s eugenical dreams don’t include the little fish with the junk genes who they fear will out breed their ‘superior’ stock. I ask you only to consider that perhaps NDPH was contrived in the same way as AIDS, the Ebola Virus, Avian Flu, Swine Flu and others were ie in a government laboratory. To the big boys, culling human beings is no different to culling sheep or cattle which is one of the many reasons that ‘they’ like to manufacture wars where hundreds of thousands step up to volunteer themselves for unnecessary slaughter. ‘They’ know exactly what causes NDPH in the high sciences and as usual they create the illusion that they are baffled by it’s sudden existence. Cytokines, Tumor Necrosis factor blah blah..they claim to know it all but then where are all the tests they have promised for years to end this horrible blight on our lives? This will never be cured just like all the other auto-immune diseases that they put out there. It’s a joke, really.

  6. Hi Amy;

    Please, please, please write to me. I want to send you something. I think it will eliminate, or at least substantially reduce, your NDPH.

    I don’t *know*, of course – but I do think.

    And, unless you’re allergic to one of the ingredients, it’s not going to harm you.

    Feel free to look around the website: http://www.doctorstevesbanjo.com

    Best wishes, Steve

  7. April 28, 2007 was when my date with NDPH began and to this day and about 20 doctors and what feels like 100 different medications later – I am still in horrible pain. I’ve recently tried botox injection – no good for me, and nerve blocks – had relief for about 20 minutes. Overall its a very frustrating thing to deal with because its not as if I am looking for sympathy from people but rather for them to understand sometimes I just can’t do things because my head hurts just that bad. I had nothing they can find that triggered my headaches which is even more reassuring (not at all). I was told it looks to be a pain management situation. My last option is to get admitted to the hospital where I see my specialist for 5 days and run every single test I have already had, but this time put me on a pain drip so i don’t get a headache, this way they can compare before and afters and see if there are differences. I suffer everyday without catching a break from these stupid headaches but everyday laying in a hospital bed for a week looks more and more appealing even though I know there will be no answers, but at least for those few days I will be pain free. NDPH is horrible to live with and no one can understand the pain you go through and how it can change in severity one minute to the next. I’m glad to have finally stumbled upon this page and to see there are more people out there suffering just like me.

    • Hi Lindsay,
      I’m so sorry to hear your story. I understand what you are going through, in so many ways. Generally, other people will not get what you are going through. I have found they get tired of hearing about my headache, even though I rarely talk about it. They prefer to act as if it isn’t here (but it is) and that I am fine (simply pretending as best I can).
      Hang in there, give the hospital stay a shot. You have nothing to lose, right? As long as there are no major side effects expected from the pain meds, I am sure you could use the break from the pain.
      NDPH is incredibly frustrating, but you have to keep trying. Have you tried the all-natural route yet? You may be able to find some “pain management” success with acupuncture, a vegan diet, chinese medicine….hey you never know! Everything is worth a try, in my opinion.
      Please feel free to come here and vent anytime. I (and all the readers) understand and I’m here to help in any way that I can.
      Amy

    • Hi Lindsay and Amy…
      I really hope you reply even though it has been 2 years since you’ve posted on here… I’m so glad to have found this site. My name is Nichole and I am almost 23 years old, I have suffered with NDPH since I was 16. I was a Sophomore in high school, it was near the end of 2006 when I got sick with bronchitis and the flu and coughed and coughed and noticed I had a really terrible headache with it. Once the sickness went away I noticed that the migraine, that pain in my head that had been so foreign to me prior to this, had not gone away, and still has not to this day… I had to be home schooled and quit all of my sports I was a part of… My “friends” went on with their lives and forgot about me while I had a constant 24/7 pain that I could not get rid of no matter how hard I tried or how much it killed me, physically and mentally. We began with Chiropractors, decompression machines, adjustments, etc. I traveled hours to probably 20 different Chiropractors that all said that they knew what I had and exactly how to treat it. I’ve tried natural supplements, over the counter medications, 6 Occipital nerve blocks in the back of my head, massage, diets of no wheat, no gluten, no sugar, vegan only, all with no progress. My family understands the pain and how I can be “ok” one minute but then pick up something slightly too heavy, walk a little too fast, sit down a little too hard and I will have to be in my room with blankets over my windows and absolutely no sound because the pain is so unbearable. It is so frustrating because I too feel like a burden, like ok you have a headache so what? Why can’t you stay out late or get up early or work long shifts or run around and be active? But it is so much more than a headache… It’s become a way of life and although I think I handle it well I know that deep down I am depressed and deeply saddened by it because anytime I stop to think about it or talk to anyone about it I cry instantly. Lindsay, I too have tried the things you have with no help and at Cleveland Clinic where they did my nerve blocks they told me about the program where you stay there for an amount of time. My option they told me about when staying there was a few weeks, they would put me on all these medications and steroid medications, have physical therapy and counseling as well. They also said the FDA would soon be approving the Botox injections, I’m sorry those did not help you either… NDPH has altered my life drastically, I can’t work as much, I can’t run around and just be free, I can’t take a full load of classes at a time… Basically I just want to thank you for having this site Amy, it is really more helpful than you know, just knowing that I’m not the only one to suffer from this and that I’m not the only one that has this pain to think about every single second of every day…
      Bless you and bless all your readers, may you all find relief from the pain –
      Nichole
      silentlaughter2486@gmail.com

    • Hi Lindsay and Amy,
      I really hope you reply even though it has been 2 years since you\’ve posted on here… I\’m so glad to have found this site. My name is Nichole and I am almost 23 years old, I have suffered with NDPH since I was 16. I was a Sophomore in high school, it was near the end of 2006 when I got sick with bronchitis and the flu and coughed and coughed and noticed I had a really terrible headache with it. Once the sickness went away I noticed that the migraine, that pain in my head that had been so foreign to me prior to this, had not gone away, and still has not to this day… I had to be home schooled and quit all of my sports I was a part of… My \”friends\” went on with their lives and forgot about me while I had a constant 24/7 pain that I could not get rid of no matter how hard I tried or how much it killed me, physically and mentally. We began with Chiropractors, decompression machines, adjustments, etc. I traveled hours to probably 20 different Chiropractors that all said that they knew what I had and exactly how to treat it. I\’ve tried natural supplements, over the counter medications, 6 Occipital nerve blocks in the back of my head, massage, diets of no wheat, no gluten, no sugar, vegan only, all with no progress. My family understands the pain and how I can be \”ok\” one minute but then pick up something slightly too heavy, walk a little too fast, sit down a little too hard and I will have to be in my room with blankets over my windows and absolutely no sound because the pain is so unbearable. It is so frustrating because I too feel like a burden, like ok you have a headache so what? Why can\’t you stay out late or get up early or work long shifts or run around and be active? But it is so much more than a headache… It\’s become a way of life and although I think I handle it well I know that deep down I am depressed and deeply saddened by it because anytime I stop to think about it or talk to anyone about it I cry instantly. Lindsay, I too have tried the things you have with no help and at Cleveland Clinic where they did my nerve blocks they told me about the program where you stay there for an amount of time. My option they told me about when staying there was a few weeks, they would put me on all these medications and steroid medications, have physical therapy and counseling as well. They also said the FDA would soon be approving the Botox injections, I\’m sorry those did not help you either… NDPH has altered my life drastically, I can\’t work as much, I can\’t run around and just be free, I can\’t take a full load of classes at a time… Basically I just want to thank you for having this site Amy, it is really more helpful than you know, just knowing that I\’m not the only one to suffer from this and that I\’m not the only one that has this pain to think about every single second of every day…
      Bless you and bless all your readers, may you all find relief from the pain –
      Nichole
      silentlaughter2486@gmail.com

  8. Hey Amy,
    Really great site you have here – am so glad taht I found it. I’m really encouraged by so many of your words. I’m also so sorry to hear that you have NDPH – I really can sympathise – my journey with this started 14 years ago when I was 13 and I still have the headache to this day – pressing down on me. After so many hospital consultants, pain medication and other therapies, I feel as though I’ve just about given up on this – some days i really don’t have the energy to go on. I managed to get through university and I have a job at the moment that I really enjoy. There are some days that I even forget that the pain is there. But it’s relentless. Feeling particularly depressed and low about it today (hence my stumbling across your site!). Hoping that we can all find some relief…

    David

    • Hi David,

      I’m glad to hear that you found some comfort here and thank you for sharing your story. I am about to hit the 5 year mark with NDPH, and I cannot imagine what it must be like for you, having dealt with this pain for 14 years.
      I can related to the ups and downs you feel. I have days when I can forget the pain and I can behave as if I am completely normal and like everyone else. And I have the bad days too, and I wonder if this is going to go on forever and if it does, how can I deal with it?
      I hope you are having a low pain day today and feeling a little better –
      Amy

  9. Hi Amy,
    A common cause of NDPH is low csf (cranial spinal fluid) pressure. Sufferers may notice a reduction in the headache some time after lying down. If that is the case then you may have a low csf pressure headache. This can be caused by and epidural. If you have had an epidural in the past you may well have this issue. However there are also cases of people who get spontaneous low csf pressure, divers, pilots or even those sneezing or clearing their ears on a plane can get this condition. Often sufferers can remember almost exactly when the headaches started or what they were doing. If this sounds like you, try high dosages of caffeine, really, it actually works. If taking 2 triple shot starbucks coffees provides a significant reduction or elimination of pain then here are some treatments you can try:
    doxycycline / singulair combo therapy
    epidural blood patch, if this fails you may need to find the exact location of the csf leak and directly target it.
    caffeine drip 500 cc over 2 hours followed by two weeks bed rest
    Hope this may help
    Cheers
    Bob

  10. Hi Amy,

    I found your website yesterday while doing research on NDPH. I have had non-stop 24/7 headaches since last November after contracting a virus in late October. I have undergone all the usual tests with the exception of a lumbar puncture which is apparently required to conclusively diagnose NDPH. I am worried about post lumbar puncture headache? Did you have one? My neurologist is calling my head pain chronic migraine at present but I am not sure if he is even aware of NDPH. My preventative/pain medications have very little effect and the more I read about NDPH the more convinced I am that I have the condition. I look forward to your reply.

    Kind regards

    Wendy

    • Hi Wendy,
      I’m glad you found me, but I’m sorry that you are here and suffering. To answer your question, I’ve never had a lumbar puncture and I am not sure that I would consent either. I’ve been diagnosed by two different docs and they didn’t request it. Also, “little effect” is typical for people with NDPH. It’s resistant to most medications, though people do find things that work, it just often takes a lot of time. Sometimes you find something that works for six months and then it doesn’t work anymore.
      Make sure that your neurologist is aware of NDPH. There are some newer treatments that may be helpful, but you need to know what you are dealing with.
      I hope you are having a good, low pain day,
      Amy

  11. Wendy – I had a lumbar puncture when I first was getting headaches to see if I had meningitis. It is not required to determine if you have NDPH. I did not have a headache after the procedure but I was in extreme pain for two days and almost couldn’t walk. If you follow the instructions of the person performing the exam you can avoid all after effects that may be caused. I wouldn’t recommend the procedure; there is no benefit from it and there is no conclusive proof it can determine if you have the condition or not.

    Best of luck

  12. Hi Amy & others that have found their way here. My husband was recently diagnosed with NDPH. His began shortly after surgery in May to repair a deviated septum. He has mostly high pain days (7-8+) and has only had one period of relative relief that lasted about two weeks.

    We’ve been through what seems like endless tests & he just got back from a 10-day stay at the Diamond Clinic in Chicago. Like most, medications are not helping at this point. He just started a regimen of Nardil. It has some very heavy side effects, so if we don’t see a change soon we’ll discontinue it.

    Anyhow, just wanted to say hello. I’m finding that the most difficult thing to deal with right now are those that don’t ‘get it’–especially family members. Any advice for how to deal with this? My husband’s dad just doesn’t understand that this isn’t a ‘headache’ in the typical sense.

    Thanks in advance & best of luck to finding what works for you!

  13. Hi Amy,
    I, too, have NDPH. Have had it for about two years now, unfortunately. Have tried a ton of medications, physical therapies, just about everything. I tear up just writing about it. I try my best to ignore the pain unless it’s a really, really bad day, but it is really ruining my life. I used to be the most active person ever, and now I am at home, in bed so so much. The idea of having kids is out the window, since I can barely take care of myself. I can’t work full time…I could go on and on.

    But I am writing because of something I saw mentioned in one of your posts–you said something about a surgery for NDPH. What kind of surgery is this? Thanks for any info you can offer. Not that I want surgery, but I feel like I will try anything.

    PS–I’m a writer/journalist too. :) I wrote about my headache ordeal here:http://www.health.harvard.edu/blog/living-with-chronic-headache-a-personal-migraine-story-201103051601

  14. I have had headaches for the last 8 years. Some days are better than others. Over 30 different medicines over the years that were of no help. I even tried Botox .Been to 4 neurologists in that span. Finally went to the Cleveland Clinic in March of this year. After meeting with my doctor and telling him about my headaches, he diagnosed me with NDPH. Cleveland Clinic wanted me to go to an outpatient program called IMATCH for 3 weeks. Monday-Friday from 8-5. I considered it until they told me that there would be 1-4 copays every day. That and I would have to stay at a hotel every night at a discount rate of 80.00. What I’m getting at is it would have cost a small fortune. After thinking hard about the cost, I was checking on line and found the Diamond Headache Clinic in Chicago. It was an inpatient and I was to stay at the hospital for 5-15 days. I did end up going (12 hour drive) and stayed for 11 days. I felt a lot better when I was discharged. They sent me home with 5 new meds and I was headache free for about a week. The headaches are back but not as severe as before. I am scheduled to go back next week for a follow up appointment. It is so frustrating going thru this. My home life and sex life has been a real struggle for my wife and myself. I wouldn’t wish this on anybody. My daughter will be 13 in a couple of months and I just want to feel “normal” and do the father things with her while she still lives with us. My family means the world to me and sometimes I think that it isn’t fair to them that I’m this way. Thanks for letting me vent. Hope you have a nice weekend!!

  15. Hi my name is Donald i’m so glad i found you site an found people that is going through what i have been suffering through for the past 8 months none knows the hell we live through on a daily basis its sucks my journey began on feb 18 at around 230 am woke me up out of a dead sleep an its been hell ever since i been through every test you can think of. but it feels good that i can relate to people onhere cause i know exactly what their going through so thank you for creating this site

  16. Amy,
    Thank you for this blog. I have been living this nightmare that is NPDH since August 30. It started with a horrible migraine (I am 34 and have never had a migraine before.) I had slight headaches over the summer which I dismissed, but the August 30 headache landed me in the E.R.
    Since that day I have had a headache. Some days on the pain scale it’s as low as a 2 or 3, most days it’s about a 5.
    I live my life. I go to work. (I’m an elementary school teacher.) I spend time with my family. But this drains me. I simply hurt all the time.
    I just wanted to say thank you for posting a venue for those of us with this condition to offer one-another support.

  17. Oh my goodness – I’ve just found your page today, I have not been diagnosed with ndph, but this describes me & my headache perfectly. My headache started in January 2011, so nowhere near as long as many folks on here but boy it’s long enough, The doctors make me feel like I must be making it up. I’ve been on so many different pills, tests etc, nothing shows up anywhere or makes a difference to my headache. I’m 39, married with 3 wonderful kids and feel like a grouch most of the time :-(
    Thank you for making me feel like I’m not going mad.

  18. Hi Amy,
    My daughter, I believe has NDPH. She has had an ongoing headache for three years straight, it never goes away. We have been to doctors and none of them seem to know what it is. They have done MRI’s and CAT scans and have found nothing. I’m at my wits end and I feel like there is no hope of relief for her. She gets depressed and I often wonder if the headache causes it. We live in Mississippi and I honestly believe none of the doctors here have ever heard of NDPH and I don’t know what there is left to do. Her last doctor treated her as if she were crazy and just making it up for attention. Needless to say we will never go back to him. She’s not making it up, and she’s not crazy. I had to take her out of school and homeschool her because she missed so much school due to this headache. Thank you for this blog, I’m glad I found you. I’m glad that my daughter is not alone and I pray that someone will come up with a cure for it.

    • Depression and anxiety is normal for someone suffering from this type of chronic pain. And most of the people who comment here would probably say that they have been to at least one doctor who insisted that they were making it up, or that it wasn’t real or something to that effect.
      I am so sorry that your daughter is going through this. Please feel free to ask questions – If I can’t answer or be of some help, I’m sure some of the other readers will respond.

    • Hello Needa. Your daughter is NOT crazy and most definitely NOT making it up! I hope you can get help :) I will post my own journey regarding my 14 almost 15 yr old daughter, so please read it :) Kindest Regards, Antoinette.

  19. My daughter of 15 seems to have NDPH for 2 1/2 years. She was so alive until this hit her. We think this started from the Chicken Pox or maybe Mono. Her whole nervous system has been messed up. We have been to every type of Doctor you can think of. Her headaches start out around 4-5 in the morning and increase to level 7-9 at night before bed. We have tried every migrain medicine on the market but not one help the headache. We go to the emergency room sometimes 2 times a week. The doctors won’t even admit her any longer. Some narcotics work the first time bringing the levels down from 9-10 to 3-4. The next time we go it does not work. She seems to get resistent to the drugs after first use. She is nauseous all the time and is no longer going to school. We are going to look into a spinal leak or possibly neck issues. She had a nerve caterized in her next with no luck. One treatment we hope to try is a lidocain or ketamine infusion. I was wondering if anyone has tried these for their headaches. The Childrens hospital in Seattle is using lidocaine infusion with some successs. There is a pain clinic in Salt Lake City that is using the Ketamine Infusions because they last longer (up to 3 months). We have tried the triptons, erogots, and every other type of medicine. She was put on a pain patch this last week but I don’t think it will help at all. Her pain tolerance has been affected also. She had an out patient surgury to remove the galblader that should have been an out patient procedure. She was in the hospital for a week with so much pain. I will never stop looking for an answer to this. There has to be one. I am so tired of the doctors where we live. They think it is in her head and don’t think she is in as much pain as she portrays. Make me so mad. I am glad i found this site but it made me even more sad and hopeless.

    • Hello Ron, I just scheduled my son (15 yr) for ketamine infusion next month (HA 2+ yr now). Hypnosis has brought my son’s pain down from a 6-8 to a 2 in 20 minutes, the man who does it does it by skype now so my son just keeps his laptop by his bed, I hope you can find someone like that in your area. It’s not a cure, just a wonderful, reliable, side-effect-free respite. Hope you find help for your daughter. Will let you know how the ketamine goes. Botox and 100s of meds (antibiotics, opiates, narcotics, anti-depressants, etc etc) did nothing good.

      • Hi my son has had this NDPH for 6 months now and is scheduled for a lumbar puncture. I am worried that this may end up making his head much worse than it already is. Can you send me a contact number or email address for the man you use for hypnosis. I am willing to try anything to help my son. At my wits end!

  20. Wow, just found this site. I have been suffering with NDPH for approximately 10 years. Last year I was hospitalized 5 times. To see all these posts makes me sad that so many other people are suffering but gives me some solace knowing I am not alone. I live in NH but went to a headache institute in MI for treatment and it is the only time I have ever met other people like me. I try to keep it in perspective but it is getting harder. I never make plans and take each day as it comes. I work from home or would never be able to function. I wake up to excrutiating head pain several days a week. When I have a respite, I do all the things most people do in a week. Fortunately I have a loving supportive husband but I have told him to go on with his life and do the things he wants to do. This disease has held me back for so long, I don’t want it to take away anything from anyone else. I will pray for you all. I try to never give up hope.

    God bless,

    Rose

  21. I was recently diagnosed with NDPH and I am so discouraged to read the length of time people have been suffering. My doctor has prescribed Tizanidine (Zanaflex) but I’m not sure it’s helping. I’ve been taking it for two weeks and, now that I’m up to the “therapeutic dose” I feel awful. It makes me feel over-medicated and very, very sleepy. And it’s done nothing to alleviate my headaches. My neurologist said to give it a month but it’s very hard to work and feel so wasted. I also saw an ENT who is eager to perform a balloon sinuplasty which he swears will get rid of my headaches. I’m not sure I’m ready for something so invasive. Has anyone else used that medication or had a procedure on their sinuses? What were the results?

    Also, I’m so afraid to tell my husband how much pain I’m actually in. He knows I get headaches regularly and has even seen me cry from them but I put a brave face on – literally (lots of makeup) – and keep going. We have 5 year old twins and it breaks my heart every time one of them asks why I have a headache all the time.

    I’m so happy to have found this site and a place to vent….and listen!

  22. Amy, I just found this website and I’ve been learning a lot from reading the different posts from patients with NDPH. I would like to share my medical story.

    I am a pre-med student that has had to withdraw from college and almost all other activities because of the chronic pain I’ve endured over the last 3 years. The pain is unrelenting and has brought my life to a screeching halt.

    The pain I experience is a non-stop, bilateral, dull, aching soreness in my eyes and in my forehead. It is not throbbing, or sharp, or pulsating. It is a static, steady ache. When different specialists have asked me about my “headaches” I always respond that I don’t have “headaches”. Rather, I’ve had one long continuous headache that has lasted over 3 and 1/2 years.

    I reside in Texas and I’ve traveled all over America to see many excellent physicians across the various specialties who have done careful evaluations. Unfortunately, despite all of these efforts, my diagnosis remains in doubt by many and none of the medical or surgical treatments have alleviated the pain I experience.

    My father (a physician) and I have created a website that contains my full medical information, including imaging reports, pictures from my surgeries, and various medical articles we’ve pulled over the years.

    there is a lot of information on the website, but if you’re willing to read through my medical history, you may have a better understanding of what I’ve gone through the past 3 years, what meds I’ve been prescribed, what surgeries I’ve undergone, etc

    here is the link: sites.google.com/site/ineedadiagnosis/

    I’d be so very grateful for any kind of helpful suggestion, recommendation, or referral.

    thank you in advance for your time and consideration

    my email: medstudent29@gmail.com

    most sincerely,
    Austin

  23. Amy,
    My name is amy and I am a mom of three kids. I have had a constant dull pressure type headache for 3-4 yrs. it is ruining my life. Pain medication does nothing. Am going to wean off ssri to see if that helps. two sinus surgeries…How do u cope with yours? I am in bed now too tired and headachey to move…:( Amy

  24. I’d like to thank everyone for posting–especially those posting details about the circumstances of the headache onset and symptoms. My kid brother has been suffering from a continuous 24/7 headache for the past 11 years (age 8), which either started from or continued after brain surgery for a tumor. We are also trying to find something to relieve his daily headache–usually hovering between a 5 and a 5.75. We’ve been to many of the renowned clinics and docs–in Chicago, New York, etc–and are making plans to go to Michigan. So right now, I’m researching case histories and looking for commonalities. I would like to put together a website like Austin’s (poster above) that might perhaps be helpful to other patients on the same path.

  25. I have had headaches most everyday for the past 15 years. I wake up many days feeling like I have a severe hangover even though I don’t drink prior to getting the headaches. I have ssen four headache specialists during that time and tried all the migraine headache medications.

    After all of my attempts with other medications, the only thing that works for me is taking three Excedrine Migraine tablets twice a day.

    This keeps them under control, but they come back every day. I would like to know what other remedies might work.

    Thanks

    Thie keeps my headaches under control but

  26. Hello to all you amazing strong people. I want you to know that I care about each of you and hope is on the way! My story is regarding my 14, almost 15 yr old daughter had a headache come out of the blue in May, 19 weeks ago! She has been a migraine sufferer since age 11 and it took a long time for them to gets meds right for that. She was put a great preventative called Pericaton (antihistamine). I should mention we are from Australia G’day mate! Her migraines were finally under control and she was pain free. When she did get a migraine,Pericaton helped with severity & the longevity. ALL good…..UNTIL that one day 19 weeks ago, When a completely NEW headache presented. NOTHING at all like her typical migraine. So after trying all kids of medicines (paracetamol, ibuprofen, codeine based drugs, even variants with “forte” on the end) NOTHING helped. So much school was missed. So off to our GP we go. He orders a CT scan – CLEAR! A few weeks later she is in unbearable white hot seering pain “like my head in being crushed in a vice” kind of pain, so off to ER we trot. They kept her on for a few hours gave her pain relief (pfft!)and did an MRI – again sadly nothing. Home – Pain -Misery! Back to ER a few weeks later in the same “vice in head” pain – The ER doc says we will do a lumbar puncture and explained why. Finally I thought ‘they will find something’ – I was feeling quietly optimistic this time. After holding my daughters hand and rubbing her forehead and fighting back my own tears as hers flowed….The result? NOTHING!! Grrr!! So home we go :( Back to our GP and he faxes through a referral to the neurologist and soon after we get and appointment. That was yesterday 13/09/13. He finally gave us the diagnosis of NRPH! So with a new pain management plan and higher does of the new migraine med our GP put her on, we are hopeful once again that relief will be found. She goes back in 3 months 13/12/13 for a reassessment. If she has had no relief he says there is a stronger drug they use for epileptic patients that has been known to be very effective. Although she will probably go into “remission’, there is not guarantee the headaches wont come back. Thank you Amy for your blog! I was fighting back tears for you, your readers and most of all my daughter as I read each and every one. I am hopeful once again, be reservedly so after reading these messages. I hope so king of breakthrough is found SOON! Kindest Regards, Antoinette.

  27. Hi Amy

    I have had a headache everyday now for the past 10 months. The headaches started the day I found out my mom passed away back on 11/5/2012. I have had everything checked and had an MRI and everything was normal. I am taking pamelor 20mg a day and it doesn’t help. I wake up and go to bed with a headache. I never had headaches before. The pain moves all around my head, my face,eyes and nose hurts sometimes too. Did I mention I’m also going through a divorce. I’m so tired of having headaches!!!!

    • Shanda, I’m so sorry for all that you are going through all while trying to deal with this headache. If the meds aren’t working, ask your doctor to try something else. Keep trying new treatments. You never know which one will be the right one for you.

  28. Mine began a year ago. 2 days after they began i extracted a tick from my leg. Was it there 2 days prior? I was thinking Lyme and had a bunch of tests all negative. Mri negative. Mra negative. No rash. Lp was negative. Normal pressure. I was certain the pressure would be up but it wasnt. Elevated protein but no pleocytosis. Had 2 weeks of doxycycline. No help. Otc meds dont help. Tried toprimax 25 mg no help. Only tried it a week.

    I keep thinking this was infectious related to tick bites. Have read of people who probably had lyme and improved with iv cefotaxime. Has anyone tried iv antibiotics? It seems like there may be an infectious agent maybe Borriella maybe something else. Some cases i read about people had headaches for years and resolved with iv cephalosporin or penicillin. Wonder if anyone with ndph has tried iv antibiotics?

    • Hi – I have not tried iv antibiotics, but I’ve been on a variety of very strong antibiotics for 18 months at a time. Have you also been tested for the coinfections of lyme (erlichiosis, bartonella, babeosis)? I tested negative the first three times (over three years) when suffering from NDPH. Antibiotics are the only thing that seem to help me. Try to find a Lyme Literate doctor (LLMD) as they may be able help. Previously, for at least 6 years NOTHING helped my head pain and I feel like I tried everything out there. Topomax is the first thing everyone gets, and most people find it to be useless in treatment.

  29. Hello. I have’t bothered to look at a headache site for well over a year because there never seems to be an answer. This is the first time I have heard of NDPH. My doctor referred to it as Chronic Daily Headache Syndrome. Either way it sounds the same…that is affecting hopeful people with a sense of hopelessness. I am about six years into it. Sinus kicked it off for me. And a fair bit of trauma to boot. As time has worn on, my neck is now in constant pain too. The stress of such a debilitating condition just keeps hammering away at every sinew. No-one gets it. They tell me how well I look. I’m sensitive anyhow. Chances are everyone contributing to this blog is highly sensitive but now I am often angry, always crying. It’s frustration isn’t it? It’s the NOT being able to do the things you want to do. It’s like being in a wheelchair only the chair’s invisible. I often find myself saying “this is not living”. And it isn’t. It is simply an existance. I’m sure we all share the same dream of one day, just one day of waking up feeling truly “alive”. Now I’m off to bed – way down here in little old New Zealand, and despitre my $250 pillow, I know I will wake up feeling like crap. Surely to God there must be some expert out there who can help us? Surely?????

  30. Have had all kinds of blood tests an ct scans….thet find nothing….my head is going to explode every minute of every day…..Its ruined my qu as lity of life and ability to function properly…..fml

  31. Hi,my headache started Sept 4, 2012. I’d never suffered from headaches before. Just started like that out of the blue. All test/imaging results normal, tried all sorts of paramedical service and this week-end started medication #11 gabapentine. Nothing has worked and not too confident about this as don’t feel right and worried about the work week about to start and how I’lll manage. It’s just sooooooooo frustrating. I really try to be optimistic, especially for everyone around me as this has had such a negative affect on all thrive lives, not just mine….

    My headache is every day, intensity varies but is always there and the location of the pain moves around. I am sorry to see so many others suffering, especially when I see for how long. Sadly treatment options seem limited due to lack of facilities, specialists. I know my doctor is trying but…

    Hoping we all find something that helps at least reliev the constant pain.

  32. Hey Amy: it’s Michelle from Wisconsin. How are things? Do you know anything about low dose naltrexone for ndph? Has anyone mentioned trying it? Looking at doing it to try to reset my immune system & ndph.

  33. Hi, my name is Becky. I was recently diagnosed with NDPH. I have had a headache since early November of 2013, so it has been 4 months with the same headache with no relief. I am on topamax and an antidepressant to help the headache but I don’t find it to be working. I’ve tried plenty of other meds that are used for migraines as well. I started seeing a chiropractor – it seems to be helping maybe a little bit.. Thinking about acupuncture. But of course nothing takes this headache away. My headache specialist wants to do Botox next.. Has anyone tried this?? I have concerns. If anyone has advice or can tell me what has worked for them please do so. I just turned 21 in janurary and this is very hard to deal with. I never had a headache like this in my life !!

  34. I have been living with daily headaches since about 2005. First it started where I just had this little headache for a couple days then a nasty migraine. After a few years this grew to being a daily headache with 2 to 3 days a week migraine. Since about 2011 it has gotten so much worse where it is no longer just a headache, it is a really bad headache to the near migraine daily. This has also gone down to my neck.

    In 2011 I got a MRI of my head with contrast, it showed nothing but a few white spots which the Neurologist shrugged off as probably being caused by the migraines. He prescribed me medications which I ultimately took myself off of. It seemed like each time he prescribed me a drug I would have a nasty adverse reaction like numbness in my legs to the point of my legs giving out on me, increased attitude (or bitchiness if you ask my poor husband and kids), heightened anxiety and depression, and/or insomnia to the point where I could not sleep for 2 to 3 days at a time.

    Finally I decided to fire this doctor because he kind of gave up on me and wanted to send me to a pain management specialist to try other drug therapy treatments. A friend recommended me to her doctor who ran another MRI, but this time on my neck and found I had 2 bulging disks pressing harshly on the nerves. So he thought maybe surgery to remove those disks, replace them with bone and hold with a titanium plate would help me out.

    Negative! Pain is still here!

    I had this surgery back in November 2013 and as of today I am in far worse pain than I had been all the years prior. I have tried muscle relaxers, physical therapy, over the counter meds, prescribed meds, I can not sleep, I can not concentrate, I can not relax, I just feel like I can not function. Since I still have young children I have no choice but to force myself to function for them because none of this is in any way their fault. Sometimes I feel helpless and defeated.

    Not that I want anyone to feel this pain but I must say I find it a little comforting to know that I am not alone. Thank you for sharing all your stories and for reading mine.

    Laura

  35. Hey anyone out there! I have suffered from severe migraines for more than three decades and always lived in hope of the day they would stop. About 7 years ago a headache came and never went away. It fluctuated and could be eased with medication, but never entirely left. The migraines hung around as well. I “joke” that I wish I knew the days of only migraines were the good days – I would have enjoyed them more. So what I have read in articles about acceptance and living the best we can may sound trite and even make us a little mad – they are true. We can’t count on better days ahead. We can hope, we can try, but we can’t expect. After 7 years of going strong, rarely taking a sick day, I find my greatest frustration is that my friends and co-workers so minimize my pain. They often say hurtful things like expressing their own temporary aches and pains as obviously being “real pain” unlike mine, because they have to go to bed or call in sick. I’ve done such a good job of soldiering on that no one thinks my suffering is real. Anyway, now that I’ve griped – I want to offer what has been a small ray of hope in my life. I started Gabapentin a year ago – literally the last drug I could try. A year on Topamax did nothing, or beta blockers, antidepressants, etc. Gabapentin gives me an hour or two here and there with no pain – and no bad side effects or ‘high” feeling. Only those with constant pain can appreciate the joy of just a short time with no pain and a clear head. I just want to offer that to anyone still trying out medications – or who like me stopped after Topamax without knowing Gabapentin existed. My true hope is a belief in an eternity without pain after doing the best I can during this lifespan – no matter how long or how short it may be. Blessings to all.

  36. I am so glad I found you and this community this site and finally a name for this condition. After seeing the cartoon sketch Amy posted about ndph I was in tears as it resonated with what I had been through totally. It really felt liberating to meet a group who knew exactly what I was going through. When I finally finding a name and reading about this disease I realize I have been an almost trademark case. My entire life has stopped and no one ever understands. My husband thinks I could just take a pill. He doesn’t understand it never works and doesn’t go away and just causes more problems. I have had a headache for over a year and two months now every single day and it all began with a wired viral type flu illness that lead me to find I had gotten a tick bite and had babaciosis. I was treated for the babescious under the impression that once fully treated this daily headache would go away. I think the scariest moment was when my pain was so intense that I had to go to the hospital cause I lost my sense of taste for 3 days and they thought I was having a stroke. They gave me morphine for the pain and it did not work. Nothing I took worked. I took so much medication that I started having problems with my speech and walking more then 3 steps. I began trying to figure out anything something as other complications would send me to the hospital 3 more times. Finally during one of those hospital visits they had dosed me with heavy dosages of 2 I’ve antibiotics which left me in for about 2 days at a lower pain level for the fist time in months and I dove into research why. I thought the headache was on its way out but then it returned stronger with a vengeance after a few days out of the hospital. In another hospital visit and drug called reglin for anti nausea had lowered my pain level for 1 hour but then it returned almost stronger after. I realized the one thing they had in common was their effect on inflammation. So I tried something on my own that was a buzz to help with inflammation a gel from a tree bark known as DMSO gel. I applied a small amount to my wrist area and it absorbed into my cells and within 10 minutes my headache was gone. It was a liberation I had for 1 day and a half that I will never forget. It then returned again and I felt I may be on to something. It was a holistic approach to treat inflammation. After that I began to see a holistic doctor. I dramatically changed my lifestyle to an all holistic / organic lifestyle. I did a vegan type cleanse for 4 months on my own and saw a variety of homeopathic nutritionist and holistic professionals as I too joined in my own research on the matter. My food my house cleaners even my soap are now all chemical free all natural products. In all my effort I was able to resolve the multitude of other coinciding illnesses and allergies that I had all my life that help to complicate my illness like asthma, a colon and gall bladder issue that the doctors were attributing to the headache and my severe allergies to grass trees dust mold and cats that they also attributed to the headache due to the sinus problems they cause. With the help of my holistic doctor I got rid of them all and was even able to stop all prescriptions but yet my headache remained. In my holistic quest I turned to holistic methods and discovered magnesium, once I found my correct dosage for what my body needed I was able to find some relief from the pain by mixing a powerful magnesium powder with water and holding it under my tongue for 20 seconds before I swallowed it. I added organic turmeric powder to the mix and have been able to get a lot more good days but never freedom. Depression has set in to make complicate my diagnosis of PTSD and post concussive syndrome and stress only adds to the headache. I am still on this journey now and then I find this page and the corresponding fb community that in turn finally had a name for this horror and put me with people who know exactly what I am going through and it was validated through a powerful yet truthful cartoon. The tears and emotion is overwhelming to know I am not alone in this and that this nightmare has a name. My breakthroughs have been that I have been able with the diet changes to get the headache to stop affecting me while I am sleeping and I have been able to lower my average pain level from a constant 9/10 to a constant 4-7. It feels better when I sleep a and for 3 minutes after waking up. This is huge because it used to be intense all the time and prevented me from sleeping. But there are days I have to wear my shades all over because of the light and still have to recluse.i feel like finding the cause of inflammation is the answer to liberation from this pain which is where I am today. I am reading a multitude of stories now and trying to see the common link between them all. Maybe due to the cold or flu like beginning could clue into the fact that ndph may be some form of unknown virus parasite or bacterium that causes inflammation by disturbing the cranial system. That is what I am trying to figure out now. I am a firm believer in cause and effect in our bodies. There is a cause that is affecting us all resulting in our daily headache. I truly feel happy with finding this community because in comparing and sharing our stories we can come closer to finding a common link and a cause and that can lead to a remedy for that cause that will help us all. Thank you for reading my personal journey and I will share more as I continue to find a way to conquer this headache. My life the job I once had the music I once loved to do has almost completely come to a hault. But I refuse to give up and now I feel if we work together we can not only get our lives back but somehow get back to a person who is not in pain. I am still hopeful and defiant because it is all other than this headache that I have left.
    Miraj Lee Saxton.

  37. Hi Amy,

    My name is Jamie and I have been suffering since January. It started out as a bad sinus infection and the turned into vestibular neuritis and that triggered the migraines, so we thought-that and a terrible life event. I’m 25 and I have to now rely on my parents for everything. I was completely bedridden for the first 7 months. I lost my job, my social life, and my happiness. I have tried every form of medication, therapies including craniosacral, supplements and magnesium drips, Botox, and nerve blocks. I really need advice on what to do next? I just had to turn down a great work opportunity because of my inability to function in a work environment. I have way more bad days than good and I just feel lost and hopeless.

  38. I’m About to do my third round of Botox. I haven’t had success, but I know some migraine people find it helpful. I’m only 25, so I totally feel you.

  39. Hello Everyone
    There are lots of us here.
    We are all in this together.
    It is so clear that more research needs to be done into this debilitating condition.
    Could we set up a charity, and somehow try and encourage someone in the medical profession to conduct a mass survey into NDPH? I know Dr. Rozen has done some research – could we fund him to do more?
    We could all take part.

    Part of feeling so helpless is that we feel as though we aren’t heard. Our condition is not formally acknowledged or understood.

    Let’s make a charity for medical research, if there isn’t one already.

    • I was thinking the same thing. I saw that someone in the UK recently held a charity event, but the money went to support and treatment of patients with NDPH. I think funding for research will only happen if someone makes it happen. NDPH doesn’t create enough revenue for anyone to invest in research.
      I am happy to offer my platform here and my social media contacts to assist, but I honestly don’t have a clue where to begin setting up a charity / non-profit. If anyone would like to take on such a project I would be willing to help. We could put together a team…we all have skills and knowledge to being to the table.
      All ideas are welcome. :)

  40. Hi, my name is Tamara,Iv’e been suffering with headaches everyday for 2 years,I have seen doctors of all kinds.What it boils down to is they don’t know.I’m 53 years old,an I am so thankful to see that I’m not the only one going through this. Thanks

  41. Hi, I have just found this site, and find it interesting to say the least, I havent got NDPH but my husband has. He has had the condition for eight years, continuous pain unable to work, cant sit up, stand up, go out, its a nightmare. He has had so many different types of medication that we have lost count. At first they thought that he had suffered a CSF leak of spinal fluid, but then that was rules out, he has had a Intercarainal monitor bolted to his head which showed no reduction in pressure, so NDPH it is, he struggles to cope, and all we can do is support him and take one day at a time. And yes the date is so stuck with us 3rd May 2005.

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