Living with NDPH

Jump to Comments

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 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