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New Daily Persistent Headache Research News

New daily persistent headache (NDPH) is “rare” and “poorly understood;” there is “no known treatment for NDPH.” These statements, which are from abstracts of two studies that were presented at the American Headache Society’s conference in June, succinctly capture the frustrations of people living with NDPH. These studies provide some insight into NDPH.

Characteristics & Precipitating Factors of NDPH

An examination of patients with NDPH at Stanford’s headache clinic revealed some interesting details about the characteristics of NDPH:

  • Patients most often described the pain as pressure-like and in the front of the head
  • 75% said the pain was on both sides of the head (not one-sided, like migraine commonly is)
  • 69% had migraine-like features to their headaches (46% of those had photophobia, 46% had phonophobia, 37% had nausea)
  • 17% had a history of episodic migraine or another headache disorder prior to the NDPH diagnosis
  • 53% had a family history of headaches

In addition, 75% of patients could identify an event or illness that immediately preceded the headache’s onset:

  • 48% had an infection (usually viral)
  • 26% had undergone recent surgery
  • 7.4% had physical trauma
  • 7.4% had psychological stress
  • 11% had another precipitating event

This research is important to both understand NDPH better and to help classify whether it is a primary or secondary headache disorder, which can influence how it is treated.

Botox for NDPH

Perhaps more interesting for people with NDPH is a study of Botox as an NDPH treatment. In this study, 22 patients received Botox injections and 95.4% percent had multiple rounds of injections. Following the injections:

  • 4.6% of patients had 21-30 headache-free days a month
  • 18.1% had 11-20 headache-free days a month
  • 9.1% had 0-10 headache-free days a month
  • 68.2% had no decrease in headache days

Researchers also looked at a reduction in pain severity.

  • 13.6% had a greater than 50% decrease in headache severity
  • 54.6% had less than a 50% decrease in headache severity
  • 31.8% had no change in headache severity

The numbers aren’t staggering, but 32% of patients did have at least some headache-free days with Botox. That’s not trivial for people who have received no other relief.

This was a small retrospective study. It’s results point to the need for more research on Botox for NDPH.

52 Responses to New Daily Persistent Headache Research News

  1. Kate says:

    Thanks for sharing! Very interesting. Do you have the citation for those studies? I’m especially curious about the Botox results, as I’ve never heard of folks with NDPH getting pain free days from it, just a small number who noticed a decrease in their pain levels. Best wishes.

  2. Lisa says:

    Thanks for sharing this. I often wonder about how patients and their drs distinguish between daily migraine and NDPH. It seems to me from talking to those in the community many patients don’t know themselves. It’s good to share any awareness and research about this condition.

    • Lisa,

      I think it depends on the doctor and if they know about NDPH. Patients being able to identify the clear onset of a daily headache helps identify it for sure (but, of course, not every patient can do so). This is part of the diagnostic information in the International Classification of Headache Disorders, which may be helpful:
      “NDPH is unique in that headache is daily from onset, and very soon unremitting, typically occurring in individuals without a prior headache history. Patients with this disorder invariably recall and can accurately describe such an onset; if they cannot do so, another diagnosis should be made. Nevertheless, patients with prior headache (1. Migraine or 2. Tension-type headache) are not excluded from this diagnosis, but they should not describe increasing headache frequency prior to its onset. Similarly, patients with prior headache should not describe exacerbation followed by medication overuse.”

      A chronic migraine diagnosis, which would encompass daily migraine, includes 15 or more headache days a month, at least eight of which are migraine. If someone has eight obvious migraine attacks a month, then their other headaches are usually thought to be migraine in origin even if they don’t have the symptoms of a full-blown migraine attack.

      I hope this makes sense — I’m not thinking very clearly. This would be a great post topic, so look for me to flesh it out in a post soon. Thanks for the great question/comment.

      Kerrie

  3. Sarah says:

    Are there currently any studies, clinical trials or even research being done on NDPH?

  4. Sarah Payne says:

    Hi Kerri
    I have NDPH. I have had it since April 11,2009. I also developed Chronic Migraine Disease in 2012 along with Occipital Neuralgia. If there is any questions you have please feel free to ask. Btw I love your articles.

  5. Ken McKim says:

    My wife has Crohn’s. I make chroinc pain videos to help educate people on what it’s like to live with different types of chronic illness. My latest video is for those who suffer from New Daily Persistent Headache, prompted by an email from one of my viewers.

    http://youtu.be/T4i7isJO8Ic

    Thanks for letting me share here with you. If you feel that any of my videos might help you to educate people in your life about chronic pain, please feel free to share them.

    Ken

  6. Lawrence Agee says:

    Has anyone done autopsy studies on ndph? It would be interesting to examine the brain for inflammation, etc.

  7. Victoria Trenholme says:

    Hi, I’m from the UK, I was diagnosed with NDPH in March this year, I’m 28 and was a trainee solicitor, I’m also due to get married next year to my partner who’s in the army. NDPH has totally disabled me and has ruined my life, but I’m fighting hard and staying positive to try and get some sort of quality of life back. Ken, your video is very accurate including the burning! however my pain is far worse than a migraine and had not for 1 second ever gone. Thankfully after trial and error with lots of medications I am having a little success with Topiramate and Gabapentin, which takes just the edge off the pain to allow me to at least function and get out of bed everyday. Next course of action is botox on the 25th November, which I’m very nervous about as my head is very tender but I’ll try anything so I will let you have an update as to whether it provides me with and relief.
    Thank you, Victoria

  8. Amy Francis says:

    As a fellow sufferer with chronic migraines and NDPH for 8 1/2 yrs, I truly know that it is overwhelming to live with this kind of pain. There are some things that I have experienced that have helped, however.
    1. You must find yourself a migraine specialist/headache clinic etc. rather than just a neurologist who treats migraines. This is vital! I just moved and now have to travel over 4 hours to my clinic – but it is worth it.
    2. Support is essential! Your spouse, friend, parent etc. needs to recognize the level of pain you are in rather than dismiss it. And this goes along with the next one….
    3. I saw a pain psychologist at my migraine specialist’s urging. This was so helpful! He had dealt with over a thousand of patients in pain. Biofeedback, imagery, etc as well as someone who understood the mechanics of pain and could listen to my grieving heart.
    4. Grieve. This is a loss. Life as you imagined is not happening.
    No, I am certainly not pain free by any means. But, through trial and error, I am able to get out of bed and laugh again and enjoy my kids!

  9. Lindsey Rose says:

    Hi there, my name is Lindsey and I just cam across your blog and first of all thanks for sharing your experiences. I have been diagnosed with NDPH and have been living with this daily headache for 6 years. It started one day when I woke up with a headache. Then about 2 days later I was hospitalized with an autoimmune virus. I was in the hospital for 5 days. Now six years and countless medication, MRI’s and testing later the conclusion is NDPH. It has been so hard to try and function normally while being in pain everyday, but I have found that sometimes you have to fake it til you make it! I have a very busy husband and 4 kids ages 10,8,6,and 4. This little family of mine is the most important thing to me and I have to function for them. I am also a preschool teacher and being there for those kids is very important for me too. Some days are really bad when my pain is at its worst. Those are my not so good mommy days. But if I don’t keep getting out if bed everyday and living my life, then what is the point of living. I have found with God, a good support system, and my determination to not let NDPH win, I can live one painful day at a time.

    • Hi Lindsey,

      I’m so sorry you have to deal with NDPH. Life with all those young children sounds hectic and rewarding! It sounds like you’re taking good care of yourself. I wish you all the best in finding an effective treatment.

      Take care,
      Kerrie

    • Barb says:

      Hi Lindsey,
      My name is Barb and i was diagnosed two years ago with NDPH. I use to have migraines a lot and have been on topiramate for ten years. I thought maybe being on that for so long caused my NDPH but they say it hasn’t. Mine started like yours one day i woke up with a headache and it never went away. I was a preschool teacher and i taught four year olds. I loved my job and the children. When our granddaughter was born i resigned to stay home with her because my daughter had to work. It was a big change but i was happy. I was reading where you said it may have been caused by stress. I was very stressed for several years at work. It was not the children or the parents. I worked in a Christian preschool with some ladies that i thought were my friends. It is hard to hear people have lied about you and there are people who want to stir the pot. I just don’t handle that sort of thing very well. You talk about being stressed! I should have left way before i did but i loved what i did. I could not let people take the joy out of doing what i loved to do and that was teach the children. I was so hurt!
      I just went yesterday and had a second round of botox shots in my head and am praying they work. I read how many years a lot of people have had this headache. I have also been to an infusion clinic for three days. That is where they put an iv in with different things like DHE, steroids, magnesium, and whatever the doctor thinks will break your cycle. You do it for like 5 hours then you check out and go to a hotel and go back for three days in a row. I did that once and they say sometimes the second time works.
      I am going to a chiropractor and i have a massage therapist as a really close friend. I would love to see if this would help instead of all the medication i am on. It is so hard to know what to do. I just keep thinking of things to try. I am getting glasses and i think, oh maybe it’s my eyes! Have you tried the chiropractor and massage therapy? I read so many of these i can’t remember.
      My three children are grown and out of the house. Two of them are married but i still want to be able to do things with them. I am not that old.
      You are so right if it wasn’t for my granddaughter there would be days i would just stay in bed. She is my joy and i have to just ignore the fact that it is there. I want so much to enjoy our time together. I am so glad i found this on here. You begin to think you are loosing it and that you are the only one.It is frustrating and i have a positive attitude so i pray that helps. My faith is strong. I know people will say well you look good. By now i can how you said it, fake it to make it! Yes, we must get out of bed everyday and thank the good Lord we can, we have wonderful families who support us and we will not let this NDPH win. I told the neurologist yesterday that they really needed to find something to take these headaches away. He said they are trying. I hope this finds you feeling better Lindsey and it was uplifting! God Bless!

      • Geri Alhadeff says:

        Barb-
        I just read your comments on thedailyheadache.com and our stories are parallel with each other. It was like I was writing your story. I too woke up one morning (20 years ago) with a very cold, icy cold head pain that did not go away. My head felt like it was in a vice. I couldn’t go to work the following Monday and I didn’t go in for 2 weeks – waiting for the head pain to go away. It never did. I also worked with children – I was an aid for 8 teachers and a mom to 256 4th and 5th grade students. Best job I ever had. I had to rearrange my duties because I couldn’t go outside to manage recess anymore and I was very much resented by the other paraprofessional so that had to take over those duties. I tried to make our jobs fair by managing the lunchroom for 1 hour – allowing the others not to have to do that particular job. No one believed I was in pain. They all told me “I LOOKED good” – it was so very frustrating. We had a no hat policy because of lice in our school building – I was the only one who wore a hat everyday to keep my head warm. After 1 1/2 years I had to quit work – and became very depressed. But, like you, I had a grandson born to take care of 2 times a week. That little boy saved me. He is now 11 1/2 and the light of my life. Soon after his sister came into our world and added another layer of love. Being with both of them always calms me!). After trying EVERYTHING that was suggested (I mean EVERYTHING: calling the Mayo Clinic – they couldn’t help me, acupuncture for 1 year every week, message therapy, meditation, a liquid concoction made by a naturopath, tea mixed by a Chinese “pharmacist”, biofeedback, counseling, etc.) I met a doctor who was doing a Botox study for 1 year. We never knew how much I would be given – sometimes I couldn’t hold my head up because the muscles were so relaxed – I kept a daily log of how I was feeling (pain levels) and after 1 year the FDA approved Botox and I’ve been getting 20 shots in my head every 3 months for the last 15+ years. It really does work for me and others. I was able to get off Neurontin (3200mg/day) and all of the other meds because of the Botox. I would love to hear from you and how you are doing. I live in Seattle and have met some wonderful Neurologists that have helped me throughout this process.

  10. Kevin Gustafsson says:

    Hi there. My name is kevin and I haven’t been diagnosed with anything yet. Currently om waiting for the 12th February because then I’m going to get a mri scan (I’m hoping the atleast find something so I’m not back to square one).
    No medications help neither. The one I haven’t tried is naramig which is a triptan but I have to be 18 to take that.
    it’s now been 4 1/2 months which is nothing compared to what you guys have been trough. But it’s still very annoying because I want to be able to have a normal life and raise is a family of my own, Though I’m only 17

    • Sara says:

      Kevin, Our son is 20 this year and his symptoms of NDPH began out of nowhere when he was 15 and a half.
      He tried absoultely everythng the Drs threw at him, medication wise. Had a clear MRI , blood tests etc. After that, he was told he was manicly depressed and imagining his pain. Well that kind of did it for us. I researched the hell out of everything and after numerous calls around the world to leading headache clinics, a usless 3 visits with a supposed TOP Neurologist here in Australia.. My son got to see another person. She automaticly looked at him, his records and gave him the diagnosis.

      He has tried Botox for the first time last month. It has exaccerbated his symptoms. So there will not be a round 2.

      All I can say is, PLEASE dont give up. If you can access a psychologist.. please do so.
      I am hoping you get better really soon. Maybe you will be one of the lucky ones

    • Kevin, hang in there. The diagnosis process can be frustrating, but there are tons of medications that might be effective for you. I know that five months feels like forever when you’re in it, but it actually is promising. It means there are many things treatments left for you to try. I wish you all the best.

      Take care,
      Kerrie

  11. Mitzi Mensch says:

    I had yet another disappointing appointment with a doctor today — and I’ve had many in the four years I’ve suffered with NDPH. Rather than tell it all here I’d like to tell you about a book I wrote called The Dangers of Kissing and Diet Coke: What Your Doctor Doesn’t Know and Won’t Bother to Find Out. Anyone with NDPH and other neurological issues will be able to relate. I hope it helps.

    • Amy Whythe says:

      My sister has been suffering from severe headaches for 10 months now. From my reading of this page it seems she is suffering from NDPH. Her current diagnosis is Chronic Daily Headache(maybe this is the same thing?). She has tried various medications, the current one being topomax. Maybe I am too optimistic but does NDPH ever just go away? Or should I be coming to terms with my sister having this condition for life. She cannot work and is severely depressed. We don’t broach the topic that this may be something she has to live with, we just continue to look for cures. After ten months maybe this is not the right choice.

  12. Kate says:

    Amy: Sorry your sister is going through that. I have had NDPH for 9 years unfortunately. NDPH is considered a type of Chronic Daily Headache. NDPH is known to be more treatment resistant, and you see a lot of patients who can tell you the exact day their headache started. NDPH is most often constant, but it only needs to be daily to meet the diagnosis. Therefore most people with NDPH will say they have a headache (singular), not headaches (plural), as for them it never goes away. There is a subset of NDPH which is self-limited, ie. it goes away on its own (typically within 6-12 months).

    Otherwise, it often takes a lot of trial & error to find helpful treatments. Over time it also gets easier to cope with. Is she seeing a true headache specialist, ie. a neurologist who only sees headache patients, all day every day? That is ideal, as they should be most familiar with treatments to try for NDPH. Regular neuros often get quickly frustrated with NDPH patients who are unlikely to respond to the first basic med or two. There aren’t too many differences in treatments for different types of headache conditions, but a NDPH diagnosis can be helpful to differentiate it is treatment-resistant.

    However, it is important to note that NDPH (and CDH) is a diagnosis of exclusion, so be sure that they have ruled out other conditions as being the headache cause, many of which may be more readily treated. Often a lot of time is spent truly ruling out other conditions, including seeing other specialists relating to any associated symptoms she may have (often pain in another area such as sinus, ear, neck, etc). Once most everything has been ruled out best it can, then typically it is a condition to be managed, like most other chronic conditions. They should be trying her on the various preventative/daily meds (like Topamax), procedures (nerve blocks, Botox), alternative therapies (acupuncture, massage, pt), as needed meds (Triptans, analgesics, muscle relaxers), supplements, and lifestyle changes / trigger identification (diet, exercise, sleep, hydration).

    Another good route is to try to break the headache cycle. Ideally through inpatient IV meds (typically only offered through headache clinics associated with a hospital), but even oral antibiotics or steroids are sometimes helpful.

    Is she getting help for the depression? It is very common with chronic pain conditions. At a minimum she should be seeing a therapist. Some are trained in chronic pain / health conditions, and may be able to help her cope. They may even be able to give her some exercises to try for relaxation. Just having someone on the outside to talk to can be quite helpful. Tell her to hang in there! It gets better. Best wishes.

  13. Tom says:

    Hi everyone. Some have mentioned having a diagnosis but a headache that starts one day and doesn’t completely go away for years likely falls in the NDPH group. The problem is studies like botox are not finding the direct cause because botox is currently approved for migraines. I don’t have a migraine and have tried botox 2x with no change. I know what needs to be done instead.

    We NEED studies for NDPH specifically and we need to individually contact news agencies like: CNN, CBS, ABC, NBC and Dr. Oz even. Not just one but once a week. I have done this but hoping for a drug to help us is the wrong approach. The condition specifically must be focused on. I have heard Dr. Rozen in PA knows some about this but I honestly have no clue about his competency since I haven’t seen him or believe he has the cure. Many people are affected by this horrible issue and a national spotlight from news agencies will get people saying “oh.. NDPH.. I must have that”. Since personally, I never new the term NDPH until just a few years ago and I’ve had this issue since 2003 so visibility is our big hope here.

    • Tom, there’s been some more research on NDPH in recent years, but you’re right that the pace is very slow. With pretty much any headache disorder, a treatment is started before it’s fully researched. So little is known about what causes any headache disorder. To wait to have more information would keep far too many people from being treated.

      Take care,
      Kerrie

    • Michael Durmer says:

      Tom, what you are suggesting regarding contacting those agencies is futile. The people behind those organisations are interlinked with the same elite scumbags who own the big pharmaceutical companies that are responsible for the suppression of what is truly needed to heal us. The human body has been studied for millenia and mapped out in every detail meaning that they know exactly how to remove our pain f they wanted. In fact, I would go as far to say that through vaccines, water, food, make-up and other nefarious means, they have intentionally caused our headaches. You might say that it was all done merely to profit, but the agenda goes much further than that. Best thing we can do is pool resources and connect with good people with independent knowledge of the body who can pool resources to really find out how this insidious ailment has been put into our bodies and figure out how to get it out. The evil people at the top behind allopathic medicine, one of the world’s biggest killers, have found a way to disarm a section of the population with debilitating headaches and made them think that it’s completely natural. Theres a reason that NDPH was only diagnosed in the 80’s!

  14. Lindsey says:

    Tom I am so glad you made this comment! I would love to get more awareness out there about NDPH. My dream would be for those of us suffering from NDPH to find a way to connect with researchers and allow for studies to be done. After living with this for almost seven years I would do almost anything if it meant some relief.

  15. frances says:

    hi ive suffered from ndph for 15 yrs..its tough but i have found some meds helpful..im crrently taking protiaden att night to help with pain and sleep and find it god. Im thinking of trying the botox?

    • Frances, I’m glad you’re finding some relief. Definitely talk to your doctor about Botox. It’s clearly been helpful for some people with NDPH.

      Take care,
      Kerrie

  16. David says:

    Hi, my name is David. Back in March, 2013, I woke up with an awful headache in my forehead and left eye. I complained to my wife that it was hurting, and she gave me some Tylenol, hoping it would ease it. It continued to hurt the rest of the day until I went to bed. I woke up the next day, and it has been hurting since. It has never stopped.

    I remember this exact same pain as a child, but it would only be in episodes, only lasting a day at a time. It was the exact same pain. A short while after the pain coming on, I started complaining to my wife about sensitivity on the top and back of my head (the part that makes contact with the pillow when I lie down) and the left side of my neck. I do not remember having this sensitivity as a child. I continued to take over-the-counter medication, hoping that it would go away, but it never did. We became worried and sought out a neurologist, but were unable to get in to see one in a reasonable amount of time, so we saw a physician’s assistant. He tried me on medication, but I never felt any changes. He eventually did a nerve block, and I still did not feel any different. I had an MRI, and it showed that I had a blocked sinus under my left eye. The ENT thought this was the cause of the pain, so he recommended that I have surgery to clear the sinus. He explained that I would have pain for a short period of time after the surgery but that it should go away. We were disappointed, however, in that the pain did not go away. We saw the ENT again, who recommended that we see a board-certified neurologist. We began seeing him, who experimented with migraine medication, including Imitrex, and also tried amitriptyline. After trying these medications and not seeing any results, the neurologist hypothesized that it could be some type of neuralgia. During this time, we were also trying alternative forms of treatment, including physical therapy, reflexology, and craniosacral massage, but nothing was working. I started seeing a neurologist at Vanderbilt Medical Center in Nashville, who tried multiple types of medication with no results. After that, he tried the first Botox injection. In time, my pain level began to feel differently, staying at a consistently mild level. When the weather changes, such as in temperature and humidity levels, I have more difficulty, and the doctor said that Botox could not help with these times. Three months later, I had a second set of injections, but I did not feel any difference. The neurologist said I had tendencies of both chronic migraines and New Daily Persistent Headache. He also gave me a nerve block, to which I did not respond. During this time, I’ve also been to three different chiropractors, but did not see any improvement. In fact, they tended to make it worse. This first neurologist at Vanderbilt left the practice, so we were assigned a new neurologist, who also diagnosed my problem as NDPH. She referred me for a sleep study to rule out any possible sleep apnea, and the results were normal. My wife had done research regarding nerve decompression surgery and that plastic surgeons performed this procedure. We discovered a plastic surgeon who was going to be coming to Knoxville, Tennessee from Houston, Texas. He did diagnostic nerve blocks. If I responded within 5-10 minutes, I would be a candidate for surgery. There was no response from the nerve blocks, so the surgeon did not recommend surgery. During this time, we had an appointment scheduled for Mayo Clinic in June. During the time we were there, I had a spinal tap and MRI with contrasts done. The MRI came back clear, and the spinal tap came back showing that I had twice the normal level of protein in my spinal fluid. The neurologist said that elevated levels of protein can indicate inflammation or infection. She hypothesized that a previous inflammation or infection could have triggered this headache, but because there is no evidence of inflammation or infection now, there is no way of tracking it down. I had physical and emotional trauma in my childhood and teenage years, so we inquired as to whether that could have caused it. She said that stress can cause this, but that it usually takes one major event shortly before the headache starts. We asked her if she thought the pain would go away, and she said it is possible, but the chances of it leaving on its own decrease the longer it goes on. She told us of one patient whose headache left on its own after 14 months. She prescribed Gabapentin, which I have taken before. However, I was taking it at a time when I was taking an excessive amount of pain medication. The neurologist believes that the excessive use of pain medication blocked the effectiveness of the Gabapentin. So, In fact, my pain was worse then, and it could have been bee because of the pain medication overuse. So, I’m taking the Gabapentin again. I have been taking this for about 9 days and will gradually increase the dosage to 1800 mgs. I will also be starting Botox injections again, as she thinks I stopped those prematurely. She recommends 4-6 sets at 150-155 ccs. We asked her for suggestions on other ways to deal with pain. She said distraction techniques are important, that sitting and thinking about the pain is only going to make the pain feel worse. She did not say it would be easy but that it would take effort. The realistic goal is to show improvement in the pain but not give up hope that it will go away. It was hard hearing some of the things she told us, but it was encouraging, too.

    I am very thankful for my wife because she has overseen everything associated with this (making appointments, paying medical bills, doing research) and has never left my side, even though I’ve not always accepted her help the way I should. We are both in our thirties and will celebrate our third anniversary this month. All but nine months of our marriage has been spent battling this, and it’s been very difficult. There’s been a lot of times that I wanted to give up, but my wife has never given up on me and has always assured me that it will go away. We will begin counseling soon to help with coping with the pain and to bring closure to events in my past. I want others to know that they are not the only ones going through this. In coming across your blog, we have gained new hope and are wanting to use this experience as an opportunity to reach out to others who are going through the same difficulty.

    • Kelly says:

      David, I have a14 year old whose persistent headache began 4 weeks ago following a virus. We live in Tennessee. Have you found relief yet?

  17. Jim says:

    I’ve had NDPH for about 2 years now. In my case there are aspects of Hemicrania Continua as well, as the pain is sometimes resides mostly on one side of the head but would switch to the other side. Initially the pain was greater when on the left but that is no longer true. Initial attempts at treatment used Indomethacin which kept the pain level below 4 (on a scale of 0 to 10). Occasionally the pain could flare up to 7+ for a few days. When the pain level went above 4 I used some NSAIDs such as Vicodin, oxycodone. This regimen was tolerable for several months but I was always wary of the GI effects of Indocin. My pain usually appeared to be centered just behind my left eyeball and then would radiate into the bones of the jaw. As a matter of fact in the beginning my NDPH was accompanied by occasional excruciating , chain-saw like pain in one premolar. After consulting with my dentist and an endodontist both of who assured me the tooth was healthy. I chose not to believe them and had the tooth pulled and an implant inserted at a cost of some $4k. Because the pain seemed to be asssociated with the eye I had some prednisolone acetate solution to treat uveitis and I started to use 1 drop per eye per day. A few days later a naturopathic doctor suggested that I use CBD extracts to help manage the pain. I only used the prednisolone for about a week but after I started using the CBD, which I still use, the pain level stayed below 3 and allowed me to go on a 3 week vacation overseas. I am not making any unqualified claims for CBD here but it helped me.
    Because of the GI issues with Indocin I decided to try Gabapentin 300mg. Maybe the dosage was too high but on the first day I had hematuria which scared me no end. Subsequently the Gabapentin would keep the pain below 3 but I was reduced to a zombie walking round the house at less than 2 mph. I decide to get off Gabapentin as obviously it made me house bound. The last straw was when I fell asleep at a dinner in my honor and another time falling asleep, watching TV and eating, while I had a fork halfway to my mouth. Goodbye Gabapentin, hello Propranolol which performed similar to Indomethacin. Prior to having cataract surgery I was prescribed prednisolone acetate at 8x what I had been medicating myself at i.e. 4x a day in each eye. For the 2 weeks or so before that surgery I again had almost no pain. There had been a time when I had a sciatica problem and I was prescribed a one time massive dose of Prednisone (don’t recall the dosage) but my headache went away for 3 days.
    All of this happened in about 20 months. My doctor decided that my neurologist was not helping so he was going to take over my treatment. He sent me to a rheumatologist to see if I was a candidate for temporal arteritis diagnosis. The answer was an emphatic no. I’d had a disagreement with him about whether my condition was one of migraines or NDPH. Not sure who won that argument. I also pointed out to him that I thought prednisolone acetate was of great help. He poo pooed that saying that quantities were not enough to elicit the response I was describing. I guess doctor knows best. He prescribed Topiramate but before I got home he’d called and changed that to a 2 week regimen of Prednisone to be followed by the Topiramate. While taking Prednisone my pain was zero. When I started the Topiramate I was somnolent for 2 days. 3rd. day pain crept up to 3. Fourth day it was up to 6 and beyond. I started taking oxycodone to help manage the pain. After the fourth or so tablet in 2 days the Percocet stopped providing any relief. Ibuprofen similarly provided no relief while I was using Topiramate. Therefore, I got back to self-medication. I went back to Propranol knowing I could face rebound headaches (if that even applies). I am now in a position where the Propranolol is definitely better than the Topiramate but is not providing the same level of relief as before. This is only over the last 6 days or so so the jury is out. If Prednisone didn’t have so many potential side effects I’d be “cured”. That’s my story and I’m sticking to it. Next I’m going to visit a headache clinic. I’ve had 4 MRIs, 2 CT scans, EKG, ultrasound of the carotid artery, spinal tap etc.etc. and unfriendly conversations with ophthalmologists who refuse to speculate why the pain appears to be behind my eyeballs.

    • Bonnie Lee says:

      My son has been dealing with this since Sept of 2013. has had MRI CT scan, Omega proceedure preliminary, allergy tested, 16 weeks of Chiro, been to Mayo clinic and goes to Baylor headache center in Dallas every 3 months. Nothing showing anything. Just wondering if you have every had an Optical MIR? He is scheduled to have one in a couple of weeks.

  18. Janet says:

    My son came down with a viral infection on September 9, 2006 with a high fever and a headache that he has had ever since. He was 16 years old at onset. He was diagnosed with New Daily Persistent Headache with the first visit to the neurologist. Unfortunately, nothing has helped. Since nothing has helped he had a round of Botox. It made him worse. I was diagnosed with Complex Regional Pain Syndrome in March 2008. Two extremely rare pain conditions in the same family and the doctors say their is no connection. Very frustrating when the doctors tell you not to give up hope, but they are discontinuing their service because they are not making any progress.

    • Kelly says:

      Hi Janet, my son has had the same experience as yours: 5 weeks now with a persistent headache following a bout of enterovirus. Has your son found relief?

  19. Dr. Lewis McBride says:

    Unfortunately no cure for New Daily Persistent Headache will ever be provided to the public due to it being yet another nefarious creation of the parallel government who run your country. NDPH is just one of the many methods being used to neutralise your ability to resist their growing power over you. Think about how much money goes into research for medical cures and how cures never materialise, but these mysterious diseases that the medical establishment claim they are clueless about just keep on appearing don’t they?

  20. Barb says:

    There seems to be more people with NDPH than everyone knows. Like my neurologist told me he knows of this because this is his profession. People who don’t go to a neurologist have no idea what to call it. It is time to make it more known somehow so people who have been suffering so long with a headache at least have some sort of a diagnosis. When you tell people you have had a headache this long and what’s it is called they say that they have never heard of that. I was so thankful to find it had a name and that i was not loosing my mind. I was thankful to find that there are other people dealing unfortunately with the same thing. I just think it should be made more public. Get the awareness out there of NDPH. I have been on topamax for ten years for migraines. I was thinking maybe that is what is causing this everyday headache but was told no. Has anyone heard this is too long for topamax? I go for infusions to clinic tomorrow and am hoping this helps. You do three days of infusions to try and break the cycle. This will be my second time.I did it a year ago. I pray this does it. I most certainly am positive as we have to be. I pray for everyone on here too. I have also been having massages from a massage therapist. They find trigger points. Keep trying everything you can and stay positive! I think this is a great site, it has helped me! 🙂

  21. Cory says:

    I have had NDPH since April 2011. On SSDI since 2012. It is very difficult to live with as you all know. In 2013, I even went as far as having a nerve block stimulator implemented in my head with my battery pack in my lower back. It did help a little in the beginning, but not now. Seems like the headaches get worse everyday.

  22. Sarah says:

    Cory, mine have continuously gotten worst also. Can I ask how old you were when you got SSI and did you need a lawyer? I really need to file but I’m scared about how hard its gonna be to get. I hope you feel better Cory!

  23. Cory says:

    Sarah, I was 44, I did get denied the first time. When I hired a lawyer, she sent them the same paperwork I had sent them and it was approved in just 2 weeks.

  24. Sarah says:

    Oh wow! Ok that gives me some hope! My goal is to file before the end of the year. Wish me luck! Thank you Cory

  25. Kate says:

    For those dealing with NDPH, here is a NDPH-specific forum that may be helpful: http://www.mdjunction.com/ndph

  26. Karen Kaine says:

    Just diagnosed with this although I have had it since September 25 2012. I was a lawyer. Now I can hardly get out of bed. I’ve tried a bunch of medications and botox. Even ketamine. Nothing has worked although getting off topamax proved to be excrutiating and I had to get back on. Fortunately I live in a state where medical Marijuana is legal. I am trying that next.

    • Shari says:

      I’m the oddball who has more headaches on Topamax. I’m not in a medical marijuana state and I have intractable headaches. I’ve been bed bound for over a year for most of the time so I understand and hope you find a way out of this pain.

  27. Cory Parker says:

    I am now on medical marijuana now and it does help as long as I don’t travel out of state with it since it isn’t legal in many states.
    Cory

  28. Geri Alhadeff says:

    Karen, I’m so sorry to hear of your struggles. I’ve been there. Keep trying all kinds of things. What works for some it seems doesn’t work for others. I could NOT be on topamax-really bad reaction. Have you tried acupuncture yet? I went 1x a week for 1 year. It changed the pain in my head from a stabbing ice pick to more of a warm gooey feeling – which calmed down when I wore a hat (even in the summer). Calmed down but did not go away. Biofeedback didn’t work for me – but it might for you. One other suggestion would be to get 2nd and 3rd opinions. Have you been on Neurotin yet? That was a drug that worked for me but I took mega amounts to ease the pain: 3200 mg/day. One of my neurologists put my head on vacation: an anti-depressant plus Xanax really did help. It took a long time to figure out what drug combination worked. Keep at it until you find something that works. Don’t give up. TRY EVERYTHING! I tried everything ANYONE suggested. It took me at least 2 years to find the right combination. Have you called the Mayo or Cleveland Clinic. When I was diagnosed they couldn’t help me – now they are familiar with NDPH – that might be a good avenue to try. Remember: You’re not alone.

  29. Ed says:

    Interesting. I’ve been suffering with a daily persistent headache since 1994 after a bout of glandular fever. Been going to hospital of Neurology for about ten years and tried everything including both and nothing works. Only had it recently described as a NDPH and have finally found a diagnosis that makes any sense! It’s difficult at times to cope with and hard for people to understand. There are days that get very emotional and I long long to be pain free. I can honestly say that the pain has never gone away since 1994. It may be worse on some days than others but always there, lurking!! I’ve adapted pretty well and ever taken time off work but just wish I could wake up tomorrow and be free of pain.

    Ed

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