New Daily Persistent Headache

Posted by llee @llee1, 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.

@vasaiovic

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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@vasaiovic How is your daughter now? I see this post was several years back. We are praying daily for our teenage daughter – two years into NDPH.
Proverbs 3:5-6

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@julbellas

@vasaiovic How is your daughter now? I see this post was several years back. We are praying daily for our teenage daughter – two years into NDPH.
Proverbs 3:5-6

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Hi, @julbellas, and welcome to Mayo Clinic Connect. You mentioned your teenage daughter has new daily persistent headache (NDPH). Will you share more about what she has been experiencing?

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Hi All, it's been a while since I've posted to the group. Recap for me: I have had NDPH since June 2010 and been on disability from my attorney gig since September 2010. It took them a few years to correctly diagnose me, and I have tried ALL the drugs with no positive effects (plenty of negative effects). I had a brief 3 hour period of significant relief from acupuncture in 2015, but my acupuncturist was never able to reproduce that result.

My neurologist got approval for me to try Aimovig, though apparently he got some pushback from the Kaiser powers that be. They didn't want to use this expensive medication on a NDPH patient, but given my history he was able to push it through. I just took my second dose. So far there has been no noticeable effect, and my neurologist is requiring me to document for him my daily pain severity.

I follow @NDPHReasearch on Twitter, and recently saw this tweet: "Talked to some folks recently who participated in the Aimovig and Ajovy trials for CM. In several instances, response was only noted after the 5th or 6th month." I've asked for more information in case I do need to be on it for longer than has been authorized so far. I'd definitely be interested to hear from anyone who has received some relief from the Aimovig.

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@quazar

Hi All, it's been a while since I've posted to the group. Recap for me: I have had NDPH since June 2010 and been on disability from my attorney gig since September 2010. It took them a few years to correctly diagnose me, and I have tried ALL the drugs with no positive effects (plenty of negative effects). I had a brief 3 hour period of significant relief from acupuncture in 2015, but my acupuncturist was never able to reproduce that result.

My neurologist got approval for me to try Aimovig, though apparently he got some pushback from the Kaiser powers that be. They didn't want to use this expensive medication on a NDPH patient, but given my history he was able to push it through. I just took my second dose. So far there has been no noticeable effect, and my neurologist is requiring me to document for him my daily pain severity.

I follow @NDPHReasearch on Twitter, and recently saw this tweet: "Talked to some folks recently who participated in the Aimovig and Ajovy trials for CM. In several instances, response was only noted after the 5th or 6th month." I've asked for more information in case I do need to be on it for longer than has been authorized so far. I'd definitely be interested to hear from anyone who has received some relief from the Aimovig.

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Welcome back, @quazar.
Members, like @msb18 @gothope @laluzhiker are talking about erenumab (Aimovig) in this discussion:
– How do you get relief from frequent migraines https://connect.mayoclinic.org/discussion/how-do-you-get-relief-from-frequent-migraines/

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@quazar

Hi All, it's been a while since I've posted to the group. Recap for me: I have had NDPH since June 2010 and been on disability from my attorney gig since September 2010. It took them a few years to correctly diagnose me, and I have tried ALL the drugs with no positive effects (plenty of negative effects). I had a brief 3 hour period of significant relief from acupuncture in 2015, but my acupuncturist was never able to reproduce that result.

My neurologist got approval for me to try Aimovig, though apparently he got some pushback from the Kaiser powers that be. They didn't want to use this expensive medication on a NDPH patient, but given my history he was able to push it through. I just took my second dose. So far there has been no noticeable effect, and my neurologist is requiring me to document for him my daily pain severity.

I follow @NDPHReasearch on Twitter, and recently saw this tweet: "Talked to some folks recently who participated in the Aimovig and Ajovy trials for CM. In several instances, response was only noted after the 5th or 6th month." I've asked for more information in case I do need to be on it for longer than has been authorized so far. I'd definitely be interested to hear from anyone who has received some relief from the Aimovig.

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@quazar I am on 140mg Aimovig. I began to improve 4 days after the medication was administered. I am also experiencing side effects. I didn't experience them when I was on 70mg for 2 months but, I also had only 4 migraine-free days out of 60 days on 70mg. The 2 competitor meds – which both work on the CGRP itself rather than the receptor – are not known to have the constipation or muscle cramping produced by Aimovig. Emgality does have a problem in that Lupus patients taking a specific medication can't take Emgality because Emgality increases the toxicity of the Lupus medication. Because I have TMJ and nerve damage, the Aimovig muscle cramping can be quite debilitating. So, I'm trading migraine relief for intense nerve and TMJ pain. There is no rhyme or reason with regards to the side effects as they pertain to me; I haven't narrowed down a reason why some days I experience no cramping while other days it's mild and other days it's severe.

I had to request that Aimovig be added to my Formulary. The insurance company approved it as a Tier 4 medication. All 3 CGRP meds are priced at $6900/year out of pocket. But, I'm willing to bet that individual insurance plans won't cover all 3 OR won't cover them at the same rate. That would, effectively, make one medication more affordable to policy holders.

I think that the Aimovig side effects would be more tolerable for patients with no comorbid illnesses. Those with digestive issues, like gastroparesis, would probably have a difficult time staying on Aimovig. If I could convince my insurance company to cover Emgality, I think I'd switch next month.

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@vasaiovic

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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@vasaiovic …. Please give your daughter a hug from a stranger. God bless you all. It sounds horrible!

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@quazar

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.

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Hello. My husband has suffered from NDPH for 14 months. Like many of the people on this board, he had no prior headache history and can remember the day his headache started. After numerous failed medication trials (and cervical spine facet joint inhections and occicpital nerve blocks) we are trying massage, biofeedback and possibly acupuncture. Your tips for choosing alternative practitioners came at a good time. Thank you.
CiCi

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@corxdv

My wife has constant daily head pressure/headache for several months. We believe it may be NDPH, which was suggested by an ER doc – but her current neurologist (#3) believes it is instead a pinched nerve and that surgery on the cervical spine may offer some relief. An odd feature of this is that she feels tactile sensations (floating pieces of metal) in her mouth that cause her a great deal of discomfort as well. We have not heard of anyone experiencing that with NDPH, but we wonder if the pinched nerve might be causing it as well. We would welcome hearing from anyone else who may have a similar experience.

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Hello corxdv: My husband has dueling diagnoses: ndph versus cervicogenic (cervical spine) headache. Because his neck MRI and X Rays showed arthritic changes in his neck (bone spurs, swollen facet joints) he was treated with cervical spine steroid infections and nerve blocks by a physical medicine and rehab specialist. The nerve blocs did not work and the physical medicine and rehab doc offered referral to a surgeon for "nerve decompression surgery" of his cervical spine. We are leary of this surgery since the cervical spine nerve blocks did not pinpoint the location of the problem. A neurologst recently diagnosed NDPH on the basis that (1) the cervical spine nerve blocks did not work; (2) he has no neck pain and can move his neck freely; and (3) his history and negative imaging tests are consistet with ndph. Please let us know if your wife had surgery and if she has found relief.

Liked by mrector

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I have had a migraine at least that is what all my Neurologist have told me for the past 6 years non stop, my paid is always high end of the scale and most days I have black and White spots in my eyes, have a very hard time bending over I always feel as though I will vomit. There are some days I do vomit. I have Anti-Phospho-lipid antibody syndrome which I have been told this is a side affect of. I also have sever right foot and back paid, I have had surgery for my back but it comes back. I have actually worn two phyntinal patches at once with no relief. Any suggestions would be great. I have also had 4 strokes as a result of the disease.

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My son was diagnosed with NDPH in 2016, when he was 15. He has good luck with pain reduction with amyltriptaline. He takes 40 mg nightly. It provides effective relief but not a complete removal of pain. On a pain scale of 1 – 10, his "normal" is a pain level of 1 to 3.

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Thank you so much for the information on NDPH, I have had a migraine/headache for over 7 years not and have had no success in getting any relief from the pain at all. I have had 5 Neuro and 2 GP that did not have a clue how to fix it. I am going to a new Neuro on the 19th and will see what she knows about this type of headache. I hope that she has some kind of idea on what will help because having this kind of pain every day and night non stop is becoming enough to just want to stop trying.

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@dbrodnick

My son was diagnosed with NDPH in 2016, when he was 15. He has good luck with pain reduction with amyltriptaline. He takes 40 mg nightly. It provides effective relief but not a complete removal of pain. On a pain scale of 1 – 10, his "normal" is a pain level of 1 to 3.

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I’m so happy for you and your son. I am one of those unfortunate ppl for whom it seems no medication on earth will work. So many of the drugs I’ve tried have side effects that make me *more* incapacitated than the NDPH. So it’s nice to hear positive outcomes like this.

Liked by lioness

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@jbarb

Thank you so much for the information on NDPH, I have had a migraine/headache for over 7 years not and have had no success in getting any relief from the pain at all. I have had 5 Neuro and 2 GP that did not have a clue how to fix it. I am going to a new Neuro on the 19th and will see what she knows about this type of headache. I hope that she has some kind of idea on what will help because having this kind of pain every day and night non stop is becoming enough to just want to stop trying.

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I can relate. They called my headache migraines at the beginning too and it limited the kind of care I received and the compassion I got from ppl. I’m heading towards the 9 year mark in a few months, and I have had to remind myself that medicine is called a “practice” because going to medical school, specialty training, passing tests and getting a job doesn’t make someone a great doctor. Being proactive in the care of patients is still an individual personality trait. I’ve had numerous neurologists, too. Honestly the last two before my current one shrugged their shoulders and washed their hands of me when they couldn’t help me. You definitely have to be your own advocate on this journey, and it sounds like you are! Don’t give up! Take a rest and regroup if you need it, but then keep going. The one thing you *can* be certain of is that if you don’t try to find answers, no one else will. After every unsuccessful treatment I’ve taken a break and just focused on the basics of eating well exercising and trying to do things I enjoy. Sometimes that’s necessary for my body to detox off whatever crazy drug the docs had me on. Other times it was purely a mental break from the hunt. But always I know that I have a finite amount of mental focus to use, so when I run out of steam in one direction, I need to focus on something else for a while. I’ve learned a lot about how to manage my pain and how to spend time with friends this way. I’m still not able to work or even return to my pre-NDPH social schedule, but I’m a bit happier than I was. Good luck!

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@quazar

I can relate. They called my headache migraines at the beginning too and it limited the kind of care I received and the compassion I got from ppl. I’m heading towards the 9 year mark in a few months, and I have had to remind myself that medicine is called a “practice” because going to medical school, specialty training, passing tests and getting a job doesn’t make someone a great doctor. Being proactive in the care of patients is still an individual personality trait. I’ve had numerous neurologists, too. Honestly the last two before my current one shrugged their shoulders and washed their hands of me when they couldn’t help me. You definitely have to be your own advocate on this journey, and it sounds like you are! Don’t give up! Take a rest and regroup if you need it, but then keep going. The one thing you *can* be certain of is that if you don’t try to find answers, no one else will. After every unsuccessful treatment I’ve taken a break and just focused on the basics of eating well exercising and trying to do things I enjoy. Sometimes that’s necessary for my body to detox off whatever crazy drug the docs had me on. Other times it was purely a mental break from the hunt. But always I know that I have a finite amount of mental focus to use, so when I run out of steam in one direction, I need to focus on something else for a while. I’ve learned a lot about how to manage my pain and how to spend time with friends this way. I’m still not able to work or even return to my pre-NDPH social schedule, but I’m a bit happier than I was. Good luck!

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I couldn’t agree with you more! I call it the medical rodeo and I too had my orthopedic doctor shrug his shoulders at me! He went to Harvard and guess what, he doesn’t know what’s causing my pain so I’ve decided it’s up to me to figure it out! I sit here in the rheumatologist office while I type this! I will not give up and press forward as my God promises he will never leave me and I believe i will be healed ! Thank u for your help! God bless you !

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@vklittle61

I couldn’t agree with you more! I call it the medical rodeo and I too had my orthopedic doctor shrug his shoulders at me! He went to Harvard and guess what, he doesn’t know what’s causing my pain so I’ve decided it’s up to me to figure it out! I sit here in the rheumatologist office while I type this! I will not give up and press forward as my God promises he will never leave me and I believe i will be healed ! Thank u for your help! God bless you !

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Amen to that sister! Sending you a great big God Hug from Carol UK x

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