Can NDPH be Cured?

We all could use a break from our headache...

Ever since this awful headache first began nearly 5 years ago, I’ve held on to the belief that it would leave me just as rapidly as it arrived.

We are all looking for a cure for our pain, or even a little temporary relief to give us a break from the agony.

Last winter, I had a full two weeks pain-free. I thought it was over forever. I was wrong, but still hopeful.

It’s happening again. I seem to have caught a break. I’ve been out of pain entirely now for a least a week, maybe more. I haven’t been keeping track, because my life has been so busy. I’ve just been doing things.

I’ve been making plans, as if the pain isn’t going to come back to rule my days.

My break from pain follows three months on the Doxycycline / Singulair combo, followed by treatment of a long-term sinus infection that I didn’t even realize I had.

Then I quit smoking. As a reward (HA!) I needed a major root canal and had massive tooth pain for the week of Christmas. My dentist is a compassionate man. He gave me lots of hydrocodone for the pain. I was unable to determine if I even had a headache by that point!

I have never had a doctor claim they could cure NDPH. They seek to help, of course, but they don’t fully understand what causes New Daily Persistent Headache, so how can they offer a cure? In fact, I would be rather suspicious of anyone who promised a cure. But maybe that is just the skeptic in me. 😉
Chiropractors are sure it’s all because of my spine. Massage therapists believe it’s all in the trigger points and muscles. My acupuncturist was certain it was my out of balance meridians. The Naturopath said it was all in my gut, and my digestive system was the root of my problem.

I tried their cures, with minimal success.
BUT my very first MRI, taken close to 5 years ago showed that I have Spheniod Sinus Inflammatory disease. Or somehting like that. My first neurologist never bothered mentioning it. It went untreated, which is kinda… really… bad. Spheniod Sinus Inflammatory Disease can be “devastating” if it isn’t taken care of, according to my current doctor.

I only found out about this when my first doctor packed up and moved to another state. I was called and informed that I needed to pick up my records. Nice.

So, whether or not the sinus issue was a major player in my pain for 5 %$^!* years, I may never know.

If my headache will return as if it never left, I don’t know.

All I know is this:

The doxycycline / singulair combo brought my pain down significantly. I switched to minocycline after a month or so because of a few side effects.  I had very few high pain days after beginning treatment. On the pain scale, a 4/5 was about as high as it went and only once a week.

I have food triggers. Chocolate brings on the pain fast and furious. I can save myself a week of agony by staying away from it.

My 3 delightful (and loud) daughters are absolutely not triggers! They were home with me 24/7 when the pain left. The noise level they maintain can surely annoy me, but I can now confirm that it in no way is the cause!

Smoking (previously my pain management plan) had a negative effect on my condition.  ( I know, I’m shocked too!!!)

***You should know that I have quit smoking several times in the years that I’ve had the headache. This time, my motivation was not to get rid of the headache, but to help the rest of me feel good while I was dealing with the headache.

I didn't have a headache when I helped my youngest daughter build her first snowman!

I made the decision recently that I simply can not live like this anymore. It’s completely unacceptable.

I want my kids to know me as the strong woman I once was. I want them to see me healthy, or at least dealing well with the chronic pain. They deserve better than what they have been getting lately.

If the pain returns, I’m not going to give in. I’m going to keep trying to find another break.

Over the years, I have heard from people who have found their cure. For some, its surgery. Others have been misdiagnosed. Still others find a medication that keeps it in check.

I heard from one NDPH sufferer that found a cure by “throwing everything he could find at his headache.” He bombarded his system for months with every natural / alternative healing method he could find…and it worked for him.

It seems to me, from the people I’ve spoken with and read about, that those who find relief or “cures” are the ones who are relentless in fighting against it.

So here are a few one word resolutions for 2010, for those of us fighting this battle with NDPH:

RELENTLESS

FEARLESS

(It won’t kill you, but don’t let NDPH and the fear that it will never go away steal your life)

HOPEFUL

Wishing you a year of healing-

Amy


Comments

Can NDPH be Cured? — 19 Comments

  1. Wow. Thanks for the great update. That’s wonderful news! I hope your head continues headache free. Congratulations are quiting smoking too. Here’s to a happy. healthy 2010 and beyond for you! Keep us posted.
    Emily

    • Thank you so much for your support, Emily. Unfortunately, my head pain came back two days ago. Still, it isn’t as bad as it used to be, so I am thankful. I had one massively painful day and then it let up.
      I guess the good news is that I have stayed “quit” on the smoking thing, which is a very big deal for me.
      Let’s hope another break from the pain will come soon – for us all. 🙂
      Wishing you the best for the New Year- Amy

  2. Do you happen to know which “natural/ alternative” method that was use by this man? I usually react pretty badly to most meds… I would rather pursue natural means if possible.

    Thanks for your help!!! Your blog makes me feel much less alone! Please continue!

    F

    • Hi Flo, I don’t know what he used. He left his story as a comment on another article I wrote, but didn’t leave his email so I could contact him. From what he said, it seems like he tried everything from old wives tales to acupuncture, but not much in the way of contemporary medicine. I am sorry that I don’t have more information for you! He did mention fasting, meditation, and nutrition as part of his personal “cure.” I also don’t know for sure that he was diagnosed with NDPH.

      • Hi Amy:
        How are things today? I’ve been recently diagnosed with NDPH myself. The doctors are starting me on some meds but I have low expectations about whether they will actually help. If not, does this condition eventually diminish with time? Any guidance would be appreciated.
        Ed

        • NDPH is typically refractive to all treatments and is considered the hardest headache to treat by specialists. In part, this is because it does not fall neatly into episodic migraine or episidoc tension headache categories. Little is know about its etiology or cause and there is little research. As a result, neurologists generally prescribe the exact same medication they give to people with migraine, i.e. tricylic antidepressants, anti-convulsants, or beta blockers. Unfortunately, many people with NDPH do not respond to these preventers. You might also consider in-patient admission for IV treatment of DHE 45 and or nerve blocks to the occipital nerve.

          Headaches, like all idiopahtic pain conditions, can have a natural history and dissipate. Your headache is of recent origin, so it may simply pass. You would have to have an unremmitting headache for more than 6 months, with sudden onsent, to be categorized as a sufferer of NDPH.

          Cal

          • Good grief, that is really not helpful. Copying and pasting the most negative information from Wikipedia and elsewhere really starts things off on the wrong note. I’m asking Amy about her most useful treatments. Please allow her an opportunity to reply, thanks.

          • Dr Todd Rozen seems to be the guru for NDPH- from what I understand, he tries patients on Doxycycline and Singulair- trying to knock it out of you fairly quickly instead of the wait and see game is recommended. After 2 1/2 years of waiting for it to dissipate, I wish I would have heard of this before

        • Hi Ed,
          NDPH can diminish with time. I was told that some cases resolve themselves within the first year, but those that go beyond the one year mark are not as likely to just fade away.
          I’m sorry that you are going through this. Unfortunately, none of the meds I tried helped me long term. The doxy / singulair combo was the most successful, but I could not tolerate the antibiotic long term, and found myself doubled over with stomach pain.
          At this point I have just come off an antibiotic treatment for Lyme ( I was able to tolerate antibiotics other than doxy) and I am doing much better. I still have days that are bad, but for the most part, things are much better than they were the first couple of years that I suffered. ( I hit the 7 year mark in March).
          Over time, I began to focus on managing the pain more than looking for a cure. The most helpful thing for me was changing my diet. I followed the Eat To Live diet and really got a clear look at what would trigger my pain. Even still, I avoid those foods (for me it’s sugar, chocolate, alcohol and soy) that increase my pain.
          I tried everything from acupuncture to chiropractic to narcotics. I’ve heard from people all over the world with this condition. Some have found their cure, but it is always different. There doesn’t seem to be a one-size-fits-all treatment.
          The information Cal shared, while it is negative and depressing, is the truth about the condition. My first neurologist didn’t tell me truthfully what I was facing. He acted like it was no big deal and he could “fix me.”
          The bottom line is that NDPH is an awful diagnosis to be given, though it is not a death sentence. There is hope. You just have to keep trying, keep looking for a solution. I gave up for a while (years) and just lived with the pain but it damn near destroyed my life and my relationships.
          If your first treatment doesn’t help, try something else. Keep looking for answers.
          I hope that it will resolve for you quickly or that you will find a med to help.
          Keep us updated and feel free to ask if you have any other questions.

          • Hi Amy:
            Thanks very much for replying. I’ve spoken with my doctors about the Doxycycline but they dismiss it for some reason. I may need to revisit. I may also need to look into some of those other options like acupuncture, etc. Diet is a challenge for me now. The nausea makes it difficult to maintain calories let alone determine if there are any triggers.

          • Ed, I wish my neuro would have tried some things like Doxy/Singulair combo. Check out information on Dr. Todd Rozen. He is well known as being a neuro with some limited success in helping patients with NDPH in the earlier stages.

  3. I have had this headache since Sept 3- it is now April 16th! I feel for you,but it’s good to see some informative support from someone who is going through what I feel. My neurologist told me there are over 300 pain meds out there, but not one of them will help me. After trying chiropractic,acupunctre, traditional meds, I am now going to try some herbs I have read about on the internet- wish me luck. I will ask about the doxy/singulair combo next time. Here’s hoping to some pain lessening days ahead!

      • Amy- my post was in 2010, and I still continue to live with pain, 2 1/2 years later. Please anyone who has this awful pain, try what you can to get rid of it!

        • Oh my gosh, I’m so sorry! I thought it was a recent comment. Sometimes comments get past me. I’m so sorry to hear that you are still suffering. What are you trying these days? Has anything helped at all?

    • Is there any connection between dental work and sinus infections? I had a root canal (a flawed one at that, since corrected) and some other dental repair work done a few days before my headaches began, about two months ago. I’ve had a nagging suspicion that this condition was triggered by the dental visit, but the neurologists aren’t so sure (headaches aren’t localized, etc.) Any thoughts? Please help. Thx, Ed.

  4. Do you remember what the dose on the minocycline was? I was diagnosed with NDPH in 2008 when I was successfully treated. Mine is likely due to a neck injury but still inflammatory. I’ve just had a relapse and I’ve exhausted all my usual rescue meds including IV DHE. I can’t see a real headache specialist for months, but I think my PCP would try this combo for me. I hope you’re doing well!
    Thanks,
    Jennifer S

Leave a Reply