New Daily Persistent Headache

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.

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.

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.

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.

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.

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!

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 !