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New Daily Persistent Headache

Posted by @llee1 in Chronic Pain, Dec 1, 2011

I was diagnosed with New Daily Persistent Headaches at Johns Hopkins headache clinic in Baltimore last August. I am hoping to find more information on these kinds of headaches. I have found very little actual research information on them, and some of the information I have found is inaccurate.

The first neuro I went to must not have been familiar with this type of headache, as I have all of the symtoms, but he never diagnosed me with NDPH. For those of you unfamiliar with this type of headache, let me tell you what I do know. First of all let me say that I got a headache the first week in June in 2010, and it has never gone away. It does not always hurt in the same place, or in the same way, or to the same extent. That makes it nearly impossible to describe to a doctor because it sounds crazy. I kept apologizing to my first neuro for not being helpful when he asked questions, and I gave him this bizaare set of answers. Finally being correctly diagnosed was huge to me. At least I knew what I had and that there were other people with this type of headache.

The headache pain goes from moderate to severe; I often have migranous headaches but migraine meds do not phase NDPH. NDHP are not migraines. It would be nice to have migraines where at least most people have some type of success with medication. I have easily tried 40 different medications. My doc at Johns Hopkins said that this is the most difficult type of headache to treat; less than half of all sufferers ever find any kind of medication that will ease the pain. For bad and really bad days I have to take oxycodone or apply a fentanyl patch. Not only are these substances highly addictive but they also cause rebound headaches which are far worse than the orginal one was. Most days (and nights) I just try to get through them. I don't really have any options.
I was an English teacher. Last year I had to take 6 months off. I went back this year, but I only made it though the first quarter. I am on short-term disability now with no option to return to my job of 29 years.

I would love to see discussion of this type of headaches on the board! I also wanted to post this in case anyone who reads this may be suffereing from this type of headache. To be classified at NDPH, the headaches must have been continual for at least a 3 month period- no time at all headache free. They say that 80% of people with these headaches can tell you the exact time they began. Have you been give a lot of different medications and none of them phased your pain? It seems like a lot of doctors don't know anything about this headache. Both my GP and my first neuro were clueless. They may need you to educate them.

Tags: headaches


Posted by @design1, Feb 28, 2012

It is nice to finally, maybe, put a name to this nightmare. I've been dealing with these headaches for 7 years now, this is the first time I've seen someone else describe pretty much exactly what I'm going through. I did have one of the many (4 so far) Neuros I've seen mention NDPH, but he went right on past it. They've given me every kind of headache, anti deppression, anti seisure drug, plus more and nothing even slows the headaches down. We've tried Botox, accupuncture, Lidacaine to the occipital nerve, Cervical nerve ablation, twice, to where I felt like a drugged up pin cushion. Right now all I can do for relief is Oxycodone and Tamazipam at night in order to sleep. I've even tried Marijuana.. It sometimes helps and sometimes made things worse. I still work, but it is getting harder and harder to deal with work and headaches. I've been looking for more information, now that I have another place to look, maybe I can find something more on NDPH.

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Posted by @annabelle1575, Oct 19, 2012

Several months ago I started going to the Michigan Head Pain and Neurological Institute, which is supposed to be the go-to place for headaches. My headache started in may of 2002, it was the day I started my first "real" job after college. I had it for several weeks and just when I was going to do something about it, it stopped for a few days. I went through periods of being uninsured, so the HA went untreated. I finally went to a neuologist in 2004 who told me I had tension headaches and tried me on all kinds of meds, but nothing helped. I felt like he wasn't paying attention to me, so I stopped going and continued on. Meawhile, the headaches kept getting worse and staying for longer. I tried chiropractic, went to an endocrinologist, another neurologist and finally went to MHNI. I've been trialed on about 15 different meds, had nerve block injections and nothing helps. If something works a little today, there's no guarantee that it will work tomorrow. The neurologist actually never dx me with NDPH, but the woman who did my EEG mentioned it. The symptoms fit me to a T. I can pinpoint exactly what day they started, they're not responsive to any medication. Sometimes my jaw hurts and when its really bad, my inner ear hurts. Next I'm starting PT. During my PT eval, she told me I have hyperflexion which by reading a lot about NDPH, isn't uncommon. When I talk to my doctor I feel like I'm not making any sense, being stubborn or whatever because literally nothing is helping and I'm getting frustrated. This treatment isn't cheap. Reading that other people feel the same way I do is helpful, but just writing about it makes me want to cry. I don't want to have a HA for another 20 years until someone figures it out. has anyone found something that helps?


Posted by @lblack, Mar 5, 2012

Well finally some one has given me a clue about what's wrong with me! I have had chronic headaches for 25 years. Actually went to Vanderbilt early on and was diagnosed with rebound headaches and advised to never take any meds again except Phenergan to knock myself out. Really? I had 3 small children at the time and my husband and I owned a development company. That wasn't gonna work for me. So here I am years later taking anything I can get my hands on to make this pain stop. I wake up everyday with a headache. Really has effected every aspect of my life. Maybe this is an answer to my prayers. Thanks

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Posted by @mscaj01, Jun 9, 2012

I'm 36 now, my first onset was when I was 17 and ever since then I've had headaches everyday, every minute, some days worse where I pray to go to sleep and end it peacefully. As I was driving home, that fateful day, I was at the corner turning left, I started feeling nauseous and vomited right then and there. I made it home, went in the house and told my mom. I couldn't be in an upright position or I kept vomiting. We went to Kaiser. They started what I thought was an endless amount of tests and exams, terrible. To calm down the nausea and vomiting, they prescribed steroids. It helped. But I still had the headaches. They did MRIs, CTs, Angiograms, lumbar punctures...nothing. The only thing that came about was that my sedimentation rate was very high. They said it indicated an inflammation/infection somewhere but it doesn't pinpoint anywhere. They began diagnosing me as having lupus, which luckily a specialist ruled that out. No medications have helped. I hate taking meds. The good news about all those tests were that I don't have tumors, aneurysm, or anything potentially hiding. I've gone to many optometrists who says there is nothing wrong with my eyes. Then why do I feel so much pressure above my eyes? When I close my eyes and I look up, that so intensifies the pain. The "halo" around my head stays the same too.

My mom, periodically, asks if my h/a subsided, I told her no. I feel it now. She says I don't look or act like it. 🙂 I do have a high tolerance to pain, it's there but there's nothing I can do about it so why moan and groan? After 19yrs, I just went to a neurologists that I have gone in the past. He reviewed my MRI. He said nothing has changed. That's when he told me that "they" have came up with this new term "new daily persistent headache". I was hoping he would have said, there's a med that can ease the pain. NOPE.

It is true what people say. I wish I had migraines. At least then, I can have the pain subside and there's treatment for that. I have noticed that with stress and lack of sleep, my headache intensifies. Well, maybe with more research, they will be able to come up with something. Fibromyalgia was at first unknown and not understood, they have diagnosed it and now have meds for it. There could be hope.

I will continue to pray for me and you all.

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Posted by Anonymous-27f60197, Sep 8, 2012

I joined this entire mayo network to reply to you. I read that you started having these daily NDPH since you were a teen and are already 36. I am so sorry. I started having them 8 years ago when i was 40 and my mom died and I watched her die and held her hand and it was just a horrific death. She basically drowned - she aspirated and she just kept spewing all this stuff up and out her nose and i stayed olding her hand and she kept looking at me like " do something" and her stupid hospice medication had not been delivered to our home yet. she had just made the decision to go hospice and she aspirated almost immediately so it took time for them to run the morphine over. Finally, we had the morphine and the nurse was able to get her into a coma and my last words to her was that she would wake up in heaven and she would not wake up in this horrible state again. I promised her and told her i loved her. She started to wake again and the nurse gave her some more medicine and i begged her to give her enough to keep her in a coma and luckily she gave her more and she did. She died a couple hours later so she never had to wake to that again. And my other promise was to watch out for my father which i am doing now still since he is 85 and has dementia. But during that ordeal, I had to change clothes 3 times. I was that close and she had that much of stuff coming out. And after the funeral and a few weeks i noticed the headaches start. And they got worse and since then they have never stopped. I likeyou have been everywhere. Except Mayo. They refused to see me. Said I had enough places in St Louis to see me. HUH? So I have been to 5 other headache centers where i stayed 11 days to 3 weeks and had a neurostimulater put in and nerve decompression on the forehead and ocipital in the back of neck and just had a TMJ surgery and he said No, that's not it. So many ablations, nerve blocks, all kinds of IV treatments , even IV histamine to see if they could get me use to histamine since Benadryl IV is the only thing that helps me for a little while when i am in the ER. ONly for an hour though. Nothing works so i finally stopped my job 18 months ago and now I am 48 and lost a great job that paid great i went to a great university with a business degree and always was successsful. I did have a great disability package and still do get paid well with that but not like i use to get paid and my kids are now gone to college and they saw me go from a wonderful mom to mentor to a slug of a mother to never want to be like. DO you ever feel that way? Did you ever have children with all the pain? I can't imagine having a baby with all this pain. I wouldn't be able to. I wanted to adopt a daughter so bad. We have 2 boys but i know i cant even do more than 1 thing a day i can't handle a baby. And I went into menopause the same time my mom died and when these headaches started. Don't worry we checked my hormones a million times and I sought out every specialist in hormone replacement therapy first and trust me, it didn't help. it made it worse. so now I am on nothing. i just saw your story and realized you are the first person I have read about that has had it longer that me and i wonder how do you get past the feeling that we won't find a cure? Do you still allow yourself to hope? To keep looking? I keep looking and trying and allow myself to cautiously be otpimistic but now, after this last one I am not sure I can continue to hope. this last one really shot me down. And I have tried taking too many meds before and I don't want to do that again so I wonder how you get through it. Do you try to just live with it and not pretend it may get better or do you still think it will? I don't know what the healthiest way to handle it is? I went to counseling for almost a year. And I found i am better when i don't go. I tend to just talk and go over and over and over the same things and it makes me just re hash how bad things are. I am better without that. How about you? What do you do to just try to stay positive and not get so upset treatmetns fail? I want you to know what an inspiration you are to me. I understand what it is like to lie in your bed and be so uncomfortable that you can't lay down or stand up. It is like you can't do anything to get relief. So i want you to know i understand and I just am so proud of you for doing it for so long and if you have anything you can teach me i will listen. You are my inspiration and as I said I only joined this because I read your story. yOu are a wonderful person and i hope nothing but good things for you.

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Posted by @vasaiovic, Jul 7, 2012

Our daughter is completely disabled now with NDPH. She has been suffering for 2 1/2 years - level 7-10 24/7 with no let up. She was hospitalized in March and received 2 rounds of DHE and she has been extremely nauseous since. She has lost a dangerous amount of weight, has tried literally everything like you. She takes an inter-muscle injection of Benadryl when she has been at a 10 for more than 8 hours (it knocks her out, but she moans while she sleeps). She is on Marinol for the nausea, which only takes off the edge, and is now trying methadone for pain. So far nothing, but maybe after she gets up to the dose they are wanting to try? We are people of faith and are trusting God for answers and for strength daily until we do. Will pray for you all as well.

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Posted by @quazar, Mon, Oct 3 at 12:51am CDT

I'm 41 now, and I've had NDPH for going on 6.5 years. I was a civil litigation attorney at a small firm, and things were really beginning to gel for me at work. The one day I woke in the middle of the night with the worst headache of my life. When it didn't go away, I went to Kaiser, and my docs diagnosed me with a migraine. It didn't take long for me to realize that I couldn't work anymore. I was quickly introduced to another side effect of the NDPH, cognitive slowing. After burning through all my vacation and sick time, it was obvious that my inability to make deadlines or even understand the cases or documents I was reading precluded me being a lawyer. Thankfully, I had private disability insurance that has helped me pay the bills, and though I live alone, a supportive family to pick up the slack.

None of the drugs I've tried has helped, and while I haven't tried as many as some of you in this thread, I've certainly had my share, including botox and a course of DHE. My pain level varies between a 4 and 8 on most days with light and sound sensitivity, and I've just about worn my docs out with the "What next?" question. I feel as if I'm done with the prescription meds. The side effects were awful, and with so many of them, you have to take them for a while before you can tell if they are effective (or not in my case). I've also been to the Stanford Neuroscience Pain Clinic, where one of the doctors (Dr. Cowan) has chosen NDPH as his research field. I've been meaning to sign up for his study, even though his treatment recommendation didn't work either. Most of my doctors shrug their shoulders now, unsure what to tell me. My primary has just suggested narcotics, not as a cure, but to attempt to improve my daily quality of life, even if I'm not able to go back to work. I'm considering it, but don't feel I'm quite ready for that step, esp considering the rebound headaches!

Last year, I was referred to an acupuncturist by a friend who had been cured of her infertility, and after a month of treatment, I saw results. I've had one brief (3-hr) window where my pain level was virtually eliminated, and that was after an acupuncture treatment by this out-of-plan provider. My nausea and vertigo have also been nearly nonexistent since I've been doing acupuncture. Because of that, I'm still working with the acupuncturist, and even though I haven't had a repeat of that amazing, unbelievably blissful 3 hours, I hold out hope that if it happened one, it can happen again. I also continue to make dietary changes and have discovered a dairy intolerance (though I went to a nutritionist early in my illness and tested negative for food allergies and sensitivities). Each day, I aim to stagger the healthy activities (swimming or playing with my dog) and the necessary activities (dishes, laundry) with my time laying down reading or just being still in a dark, quiet place, with an ice pack on my head. That has helped reduce the number of days I'm in bed all day. I also just started doing biofeedback - referred out of plan by my neurologist, again for only 6 visits. If I'm remembering correctly, the mayo clinic site has a good description of biofeedback and its benefits.

I would encourage all of you to try alternative treatments like this, outside of an established health-care plan, if necessary. I say this because western medicine doesn't have an answer or cure for NDPH, and who's to say that the "one pill to fix it all" approach isn't the wrong one for this condition? Eastern medicine is all about bringing balance back to the body. I like the idea of bringing balance back into my life and that everything I do has an effect on my head. And my current treatment plan is a lot easier on my body than all those meds. Kaiser offers acupuncture, too, but they are limited in the number of treatments (6 per year per condition/referral) as well as the scope of their treatment (limited based on referral diagnosis). Obviously, you will want to do your research on providers. I've met some weirdos in my journey and was so happy to find a reputable and knowledgeable provider. Currently, we're working on a liver detox, as my digestive organ pulses seem to be tied to my pain levels. I'll let you all know if there's any progress! Good luck to all of you.


Posted by @hopeful33250, Mon, Oct 3 at 5:13am CDT

@quasar I see that you just joined Mayo Connect and I want to welcome you! It sounds as if you have had some serious issues with headaches and treatments that were not very helpful Thank you for sharing your experience. I'm pleased that you have found some relief.


Posted by @colleenyoung, Mon, Oct 3 at 8:10pm CDT

Thank you @quazar for adding your experience and updating this discussion. I have moved it into the Chronic Pain group to help others find it. Here is the information about Biofeedback from the Mayo Clinic to which you referred Like Teresa, I'm glad you finally found some relief. We all will be interested in hearing about your progress and sustained relief.

I read in your message that the desperate need for pain relief led you to try almost anything, and that on this journey you "met some weirdos". How did you evaluate the care providers and treatments your tried? What cautions did you take to not be sold "snake oil" cures? What tips would you offer other members who are equally desperate for pain relief?


Posted by @upnorthnancy, Mon, Oct 3 at 11:25pm CDT

Have you tried legal medical cannibis? I am impressed with it for pain relief.


Posted by @upnorthnancy, Mon, Oct 3 at 11:27pm CDT

Colleen~why is legal medical cannibis for pain such an unknown? Do you know what Mayo's opinion of this is?


Posted by @colleenyoung, Tue, Oct 4 at 5:49am CDT

Nancy, here are some articles from Mayo Clinic on the use of medical marijuana.

Medical marijuana See these webpages that answer the following questions &
- When is medical marijuana appropriate?
- Is medical marijuana safe?
- Is medical marijuana legal?
- What you can expect
- Certification and use at Mayo Clinic

Marijuana (Cannabis sativa)
- Information about its use, safety, dosing, interactions and references

From Minnesota local news outlet Post Bulletin
- Mayo Clinic, OMC let docs decide about medical marijuana

Mayo Clinic spokesman Karl Oestreich said in a statement the clinic has developed a policy for its health-care providers.
"Participation in the Minnesota Medical Cannabis program is voluntary for health-care providers. Mayo Clinic has developed a policy and associated procedures to guide providers who choose to participate in the program," Oestreich said.


Posted by @upnorthnancy, Wed, Oct 5 at 2:44pm CDT

Thank you Colleen Young. Also I have a friend whose 14 yr old grand daughter is struggling with Von Willerbrand disease. Do you have a group to join on this and if so how do I get the info to her grandmother and mother as requested?


Posted by @quazar, Thu, Oct 6 at 1:08am CDT

Well, Colleen, to be honest, I've tried several "snake oil" cures. At first, the doctors diagnosed my headache as chronic migraines and when the prescription drugs they gave me didn't work, every friend, neighbor, acquaintance and cousin of an aunt of an acquaintance was suggesting something new. I made sure that any supplements I purchased had a money back guarantee, and I used that guarantee several times to get refunds for stuff that didn't work. Those were the early years, and I learned a lot. Now I'm a lot more cautious. It usually takes a couple visits to form an opinion about a new provider, so there's always a risk that you'll spend some money before you realize the person is not reputable.

I've seen several alternative healthcare providers, and here are some suggestions re: vetting new providers. Though a lot of it seems like common sense, it can be easy to forget simple things when you're in pain or desperate to find relief for a loved one. My mom still calls me with suggestions from daytime tv! My numbers help delineate thoughts, and are not necessarily indicative of importance.

1) First and foremost, check the state licensing board to find out more about the person before the initial visit, whether they are actually licensed or if they've had any disciplinary action. Where I live, acupuncturists and other therapists are required to be licensed.

2) I also check Yelp for any reviews. You'd be surprised at how many licensed professionals are reviewed on Yelp. You can always Google the person, too, and that might reveal comments on people's blogs or other review sites.

3) The next thing you might consider is the location of their business - is it in someone's home or an actual office space and how long have they been there. If they just moved in, you might look for previous addresses or business names. 3) It's also important to note how the person likes to be paid, just so you can be prepared, but it can also be informative. Cash only might be a red flag.

4) Aside from all this, ask for credentials - where the person went to school, how long have they studied and where. My current acupuncturist studied under a woman who not only learned medicine in China but has also been to med school and is a licensed physician in the US. There was a certain measure of comfort knowing that my acupuncturist was taught by someone who had both perspectives on health care.

5) In the meeting, I pay attention to what kind of information the provider asks about. If they just want to jump right into a treatment without asking a lot of questions, to me that says the treatment isn't really tailored to my problem and therefore unlikely to be effective. Why would I pay money for that? I'm seeking a professional opinion on my treatment, and so I expect a treatment that is carefully considered.

6) I also appreciate it when providers spend some time educating me on the treatment and its potential effects. Obviously, I'm wary of side effects given the horrible time I've had with prescription meds. This wariness has seeped into my view of alternative treatments, too. So, I always consider the downside to trying new things. If i'm just going to be out money, then that's an easier risk to assess than if the treatment is going to make me feel worse. if the treatment is going to make me feel worse, will it be a long time or brief? Will I be confined to the house with a horrible GI reaction? I look for knowledge in my providers -whether they really know what they're talking about and whether they're going to share it with me. I've seen three acupuncturists, and the difference between the first and the last is like night and day. The first explained nothing, taught me nothing, and didn't spend much time on questions. Ultimately that one achieved nothing except taking my money. The one I'm seeing now spends a great deal of time educating me on how Chinese medicine works, what my pulses mean, how the body systems work, and what I can do in my daily routine, with my food, and with my body to improve my health.

7) The other thing that I like to get is corroboration. It isn't always easy, but it is possible with a bit of effort to check the information given to you by a provider. I've been a part of several groups within Kaiser and nothing I've learned in those classes or groups has contradicted what I've learned from my current acupuncturist. Yes, Chinese medicine is a different approach, but if your provider spends time educating you about it, then you'll find there's a logic that is easy to follow and verify.

8) With supplements and essential oils and stuff like that, it's important to verify what the ingredients are and where they're sourced. That can be challenging to do if the company selling it doesn't want to give you that info, but that reluctance is also informative. The same principles apply with vetting products as with providers. The good news is that, as I mentioned earlier, many products come with a money-back guarantee. I also feel more secure if someplace like Whole Foods carries a supplement. Though I don't rely on their corporate integrity to ensure the products actually work, I feel like there's an added layer of protection in their decision to stock an item vs. whether the item is only available online, and there's also a person at the store you can ask about the product.

I hope this helps. The biggest thing for me is the reviews - being able to get firsthand info about a person or product is one of the benefits of social media (imo). Though it's true that some of that can be faked, more often than not, you'll find helpful information that way.

Edited: 10/06/2016 @ 9:19am


Posted by @colleenyoung, Thu, Oct 6 at 9:16am CDT

Hi Nancy, The best group to ask questions and share about von Willebrand disease is in the Heart & Blood Health group. We will ensure that the mother and/or grandmother is connected with others who share similar experiences. I'll write to you more fully in a private message so that we don't derail the topic of daily persistent headaches with our tangent 🙂


Posted by @colleenyoung, Thu, Oct 6 at 9:24am CDT

@quazar what a terrifically comprehensive answer of your diligence. Thank you. In fact, @predictable took note of your response and recommended that it be used to start a new discussion to garner conversation specific to this topic. I might suggest cutting and pasting it to the Just Want to Talk group

@predictable would you like to suggest a title?


Posted by @predictable, Thu, Oct 6 at 9:39am CDT

@colleenyoung, @quazar, I'll try to come up with suggestions for a title. That might result in a suggestion for a whole new discussion group, because the information and Quazar's proposition seems profoundly important. Please go ahead with your current presentation plans while I take care of some personal problems at home.

Edited: 10/06/2016 @ 9:40am

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