NDPH Stories Wanted

Is a book on NDPH needed?

I’ve been toying with the idea of writing a book about New Daily Persistent Headache for years.  There doesn’t seem to be one clear place to find information about it, and advice is scattered around the web, in forums and on a few random blogs.  I would like to write the book that I wish I could have read when I was first diagnosed.

I have recieved countless emails over the past two years from people all over the world suffering, looking for help and support. I’ve collected dozens of stories, many similar to my own.

I need more! If you would like to share your story, or be interviewed for the book, please contact me in the comments below or via email. I’d love to hear more about your thoughts and struggles, the medications you have tried (successful or not) and the alternative therapies you’ve explored. I want it all.

The focus would be on personal stories as well as treatment options.  I’m hoping to consult with a few well known neurologists that treat NDPH.

What are your thoughts on this? Suggestions? Ideas? Please share your opinion in the comments section and participate in the poll below.

As always, wishing you a low pain day,

🙂 Amy


Weak and Invincible

Weird title? I know. Living with this headache is weird and horrible, but on some levels, I feel invincible.

I have made it through 5 1/2 years of almost constant pain. There are days that I think I can handle anything at all because of this experience and that the rest of the world is just full of whiny wimps crying about their colds, allergies, acid reflux and irritable bowels.

Do I sound a little bitter? Yeah, I’m working on it.

I might as well be wearing a cape and tights. I am a wonder to myself. Except when I’m in tears from the pain, beating myself up for eating a little brownie and triggering misery in exchange for a few minutes of chocolate heaven. Or when I realize I lost another day to the pain, unable to push through it and get work done, or enjoy a beautiful day with my kids.

So I’m weak and invincible. I’m angry but hopeful. I know that I am better now than I was 5 years ago.

From what I have seen and experienced, it seems that as the years go buy, we go through some kind of mourning process. First, we can’t believe this is happening to us.  How could this be happening? How could the doctors not know what to do to help me?

Then we deny it and try to go on with our lives. When we realize our lives are just not what we want them to be, we hit bottom.

Depression sets in.  It only makes things worse. So we get up again and try to put things back together. We try new meds or alternative treatments. We keep going.

We keep going. We may be sad for the life we wanted and don’t have. Sad for the precious time our pain is stealing from us. But we go on.

Acceptance. At the 5 year mark I hit acceptance. I hear of people having NDPH for 10, 30, 40 years. If that’s what I’m in for, so be it. I’ve made it this far.

I’m not saying that I’ve given up. I’m saying that I accept this situation for what it is and that has been empowering somehow. This is it. I’m going to deal now. It still effects me daily, and people don’t understand, but I can handle it.

At least most of the time.

What about you? Are you sinking, swimming or treading water?

Young Boy Cured of NDPH

NDPH has no known cure.

NDPH success stories are few and far between. It is rare that we hear of someone getting 100% better. I recieved this story as a  comment recently on an article I wrote about NDPH on Hubpages. I thought I would share it here as a full post, with the hopes of helping someone out there.  He used Cranio-Sacral therapy, which I have written about before and have some experience with. Although I have heard some NDPH suffers say that it didn’t work for them, it is certainly worth a try.

“My son (11 years old) caught a virus and developed a headache on January 11, 2010. His symptoms seemed to be ‘strep like’. He had an upset stomach, a rash on his tummy and headache. His strep culture came back negative but was treated with an antibiotic for 10-days. After the 10-days, the only symptom that remained was the headache. Then he was tested for Lyme Disease. The test came back negative, but the pediatrician put him on doxycycline anyway. After 10-days of doxy, his headache was excruciating.

Another trip to the pediatrician and they sent him to the emergency room for a spinal tap. Spinal tap fluid tested clean – no sign of infection. Ordered a CAT scan – came back clear. Admitted to the hospital for high test drugs (DHE-45 primarily) and they were treating it like a migraine. The headache did come down in intensity, but was not eliminated. We began seeing a Pediatric Neurologist who continued to try and treat him with several different migraine medicines (many…including Maxalt and Amitriptyline). We went to neurologists at Hopkins, Children’s Hospital, University of Maryland Medical Center, the MidAtlantic Headache Clinic, and Sinai Hospital searching for a diagnosis and treatment plan. He had an MRI and an MRA/MRV – all of which indicated nothing abnormal.

On March 10, 2010, he was diagnosed with New Daily Persistent Headache. We began treatment with Topimax and slowly and methodically ramped up to 150mg – but there was no relief.

His headache got worse every day with no periods of relief, and when it became unbearable we’d go to the hospital for a few days of DHE. He also began experiencing a heightened sensitivity to sound and developed phonophobia. He started wearing noise cancelling headphones and soon became addicted to them…needing them all day and even slept with them on. Any noise became very painful , and he wanted total silence. We finally began looking into alternative medicine. We started having an acupressurist come to the house. She provided him some stress relief and relaxed him a bit so he could sleep better at night.

Then we saw an alternative medicine therapist that performed Craniosacral Therapy (http://www.integrated-therapies.com/Therapies/cran) On May 3, 2010, he had his first Craniosacral Therapy treatment. His headache drastically improved after the first treatment. His headache was gone after the 2nd treatment on May 6, 2010. After one treatment for his hearing, he was able to take off the noise cancelling headphones. The therapist (who we refer to as the ‘healer’) continues to work with my son on the hearing sensitivity as he needs to retrain the cochlear nerve in his ear to regulate sound again. I should also mention that the alternative medicine therapist reviewed the MRI (that 5 different neurologists had already reviewed) and showed us his collapsed eustachian tube (which contributed to his hearing problem) and tissue at the base of his head that was ‘twisted’ and under ‘tension’. Why did none of the neurologists see what she saw? Our healer said they look for different things…like cancer, shadows or tumors. She looked for structure and was able to prove using the MRI the things she described and felt during her craniosacral therapy treatment.

He has his life back. After spending 5 months at home, not going to school, seeing multitudes of specialists and 2 hospital stays, he is finally returning to normal.

I write this post to hopefully reach people who can benefit from our story. When he was diagnosed with New Daily Persistent Headache, I surfed the web and read many a blog with sad stories with no happy endings. We are fortunate to have found treatment that worked for us. We hope that this information is helpful to you and that you too find relief from your headache.”

Thank you to “Dara” for sharing the story of your son’s struggle to inspire and help others. I think this story shows that we should never give up, no matter how many different treatments you have tried. Hopefully my NDPH cure – and yours – is out there.

We just have to keep looking for it.

My NDPH Update

The New Pup

There is really good reason I haven’t been around for a bit. Unfortunately, it is not because I am cured of NDPH. It’s because I have taken on a freelance writing job that is a bit more long term than I am used to.
It’s almost like a real job.
And, yes, I still manage my three kids.
And my headaches.
But the truth is, my head hasn’t been as bad this season. At least, not as bad as it usually is in the spring. I’m not sure why, I’m not asking any questions. It could very well be the weather. It’s been a beautiful spring here this year, very unusual.
Anyway, my new gig is as a beat reporter (that term just makes me laugh a little) for an online news website that is hyperlocal. I don’t even have to leave town for my job, which is a huge deal for me. My beat is schools, so it really is a terrific fit.
My kids love it, except when I work on the weekend, then they complain. But they may find something to complain about anyway.
They also let me write a parenting column, which I really enjoy. It’s called Adorable Chaos, so check it out if you are interested.
Once in a while, I’m just a little humorous. I still have not been able to find the humor in this headache situation, but I try.

My update,  in summary is “hey there, hope all is well, my head still hurts (I’m sure yours does too), but I’m managing to work more, be back soon and oh yeah, I got a new dog. :)”

That cute little pup at the top of my post? She’s our new little love. We adopted her just a few weeks ago. Isn’t she cute?

Just a Morphish Marfan

This is me, the morph. I mean Marf. Oh whatever...

The typical look of  New Daily Persistent Headache…

It all started when I was a teenager. I drove my sister out to Long Island to see a doctor we not so lovingly nicknamed “Dr. Psycho” because she was just a little odd. Well, ok, she seemed way off to me, especially when she looked closely at me with strange amazement when I walked into her office, as if I had just landed my space ship on her front lawn. I left my sister in her care and returned an hour later to be assaulted by this woman, holding photographs of bizarre looking people with freakishly long arms and fingers and long skinny faces.

She said I was a morph. Or at least that is what I heard her say. She said it was dangerous to be a morph, because they often die instantly from aneurysms.

“All things considered, not a bad way to go,” I thought. I was 20 years-old. Perfectly healthy. I was convinced that it was this woman who needed a doctor – not me.

“But I don’t look like that!” I insisted. I still insist, 18 years later, because denial is a tough thing to rid yourself of. I agree, I’m long. Long legged, long fingered, long faced. Paint me green and I could pass for the wicked witch of the west for sure.

But a morph?

So then I went to see Dr. Rozen, who knows a whole lot more about NDPH than my previous docs. After he talked with me, examined me, checked the flexibility of my neck (indeed, I am freakishly flexible) he left the room. When he came back, he said something odd. I thought it was odd.

I don’t remember the exact words. Something blah blah New Daily patients all look alike blah blah blah, you’re a morph.

Seriously. I almost feel out of my chair. NDPH patients are typically long, thin and super flexible. Not like elastic woman flexible, but I think the term is hyper flexible or hyper mobile or something like that. I refuse to confess to you how long it took me to understand that the word was MARF and not MORPH.

They are often athletic, often  gymnasts and dancers. Dancer, that’s me.  Specifically, we are hyper-flexible in the area of the cervical spine.

So, I used to do this dance move (that I was very proud of) where I would spin and release my head to swing from shoulder to shoulder. I can still do it. It’s side show freaky.

I just did it for my kids and they love it.

Yes, now my head hurts more, in case you were wondering.

Unfortunately, I was unable to locate any photos of “morphs”, like the ones Dr. Psycho showed me all those years ago. I did notice that many people with Marfan Syndrome look…well…kind a normal. Just long, like me.

These beautiful people have Marfan Syndrome

The truth is, those truly suffering from Marfan Syndrome live a shortened life span. They can die rather young and suddenly, from heart and lung problems if it goes untreated.

I’m going on memory here – sorry if all of my facts are not crystal clear after consulting Dr. Google.

It isn’t good. That’s what I am trying to tell you. And I don’t have a clue if I need to be treated in some way for this. I don’t know if I really have it.  I guess I can just add it to the list of issues…because it simply was not enough to have to attempt to have a sunny out look on life while suffering from a five year long headache…now I have to worry about dropping dead on the spot at any random place and time….

Yes, I am being dramatic. Did I ever tell you I studied at the American Academy of Dramatic Arts? Well, I did. But in this case, I am not exaggerating.

Here is a video I found at the National Marfan Foundation that can clarify the syndrome for you. I fear I am not doing an adequate job explaining the problem through my ramblings:

For the record, I do not have hammer toes, although I will admit that my feet are the most hideous part of my body. I do, however,  have some strange stretch marks…I thought that was where the aliens had inserted the tracking implant…heh.

I don’t understand how these symptoms relate to having NDPH. I guess that the majority of people with NDPH have these symptoms or characteristics, even if they are mild.I don’t know what the connection is or if the connection brings us any closer to a cure for New Daily Persistent Headache.

So, my question for you, NDPH friends in misery, is this:

Are you you like me? Are you naturally long, slim, narrow? Do you have piano  fingers that you can bend back in strange ways? Have you wowed friends and family with your freakish flexibility? Is your mouth very small (as in your palate) requiring you to have the palate spreader before braces? Would you walk into walls if someone swiped your 2-inch thick glasses? I swear, I can’t see well enough to brush my teeth without my glasses or contacts.

If so, please let me know. I am feeling very lonely here in the circus sideshow. The bearded lady is about as friendly as she looks…

Now seriously, if you would like more info about this very serious condition or if you suspect that you may have it, please take a look at the National Marfan Foundation.

And my apologies to any who may have been offended by my above freak show comments. I was sincerely feeling like an alien for a time there. I am adjusting and learning that I am not all that odd…well…uh…at least not because of this.

Ooooo! Oooo! Looky here! I figured out how to add a poll. So vote! And tell me more in the comments section – pretty please?

Spinning Around

Derby Racer

The Derby Racer, At Rye Playland

In my mind, my life has always been spinning. Around and around I go. The same thing happens again and again and again.

At least that is how it seems.

It just keeps spinning.

Sometimes spinning is  fun, like the ride I loved as a kid, The Derby Racer. It gives you the feeling that you are cantering free on the back of horse.

Going around in circles can be a nightmare when there is no brake to stop the ride. My headache is that nightmare.

The pain came back again. Slowly, it fell over me, like a shadow, like the sun setting, the pain fell down on me.

It feels like a darkness, a shadowy sheet that hangs over my life and causes me  first, irritation, then aggravation, then agony. And then it begins to fade, slowly back to aggravation, then down to irritation.

It goes in circles, but I want it to stop.

I feel like I am back where I started. What are my choices? What do I try now? What did I do or not do that brought this back? Is it completely out of my control? It cannot be. It cannot be.

Do you wrestle with this idea as well? That there must be some reason? There must be something you can do? Something, somewhere must be to blame for every up and down and around and around again?

And so I hate this headache again. And here is where I get stuck spinning in anger that I cannot make it stop, that no one seems to be able to make it stop.

Riding free...

And going around like this, of course, gets me nowhere.

So now you know my frustration and the cyclical nature of NDPH in my life. I know I should be thrilled that I had a break from the pain. It is so much more than many people with NDPH get.

But it isn’t good enough.

I’m not settling for it. I don’t even want to speak of it out loud.  I want my life back. I want to be free.

But it has come around for me again.

.

Craniosacral Therapy for Migraines and NDPH

Cranio-Sacral therapy (also known as cranial work or cranial sacral therapy) can be an effective treatment for some types of headaches. It is extremely gentle and not at all invasive. Many people don’t experience any side effects after treatment, although it is common to feel slightly achy the day after treatment.

The following video illustrates a self-treatment method. It will show you how to find the still point and allow your system to reset itself, ideally easing your head pain. This can be done at home, using tennis balls, according to the instructions in the video.

If you are interested in using cranio-sacral therapy to treat NDPH or migraine headaches, seek out a certified professional.

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

iHeadache iPhone App

Yes, there is an iPhone app to track your headache!

Do you need an iPhone App to track your headache?

You may already know how I feel about tracking my pain levels on a daily basis. I don’t like to do it. I don’t like to focus on the pain because it makes it more difficult to tolerate.
There are some very good reasons to keep track of pain levels as well as how much  medication I’m taking on a regular basis. I cannot commit to tracking my pain levels long-term (let’s not go overboard here), but for the sake of figuring out what medications are most effective I’m willing to try.
Of course, this will keep me from living in the state of denial, which (much like the states of New Mexico or Arizona) I find so incredibly inviting.

I don’t have an iPhone, but I do have a cute little iPod Touch that works just as well with the iHeadache App. Don’t fear BlackBerry users, there is a version for you too. Did you think you were getting out of it so easily?

Description of  iHeadache (from the website):
iHeadache captures real-time information that will aid you and your physician in making an accurate headache diagnosis and optimizing your treatment plan.

iHeadache screen shots

iHeadache will help you track:

  • Headache Symptoms
  • Acute Headache Medications
  • Length of Time Disabled
  • Duration of Headache
  • MIDAS disability scale
  • Sends your reports to your doctor

Clearly, this application could be helpful in determining how well my current treatment is working. I wouldn’t have to depend on my (flawed) memory. I decided to give it a test run.

I also decided to ignore the MIDAS disability scale, because I always feel like I’m “failing” it! I refuse to consider anything about myself “highly disabled” as they so nicely put it. So there.

It does not (at this time) include preventative medication tracking, which I think would be very helpful and I’m hoping they will include in future versions of the application. It could also use a section for tracking triggers – all triggers – food, weather, stress etc. That would make it worth so much more (in my opinion).

Here is a little sample of how the iHeadache iphone app works. It is currently priced at $9.99.

What do you think? Is it worth your time, effort and money?

No Complaints – NDPH Weekly Update

Stop Complaining!

Yesterday, I complained so much that I started to irritate myself. I heard myself say(more times than I can count) “my head hurts” and “I’m so tired” and “my head feels like its going to explode.”

It was so annoying that I decided today that I am going to attempt to go the entire day today without complaining. Not even once. It’s real early still, but I’m doing well so far. I’m even going to attempt to stop rubbing my head and making sour faces when not one is looking.

Oh, wouldn’t the world seem dull and flat with nothing whatever to grumble at?  ~W.S. Gilbert

As much as I want to tell you about my week, if I did, I would break my own rule. Yes, it’s been that kind of week. Pain, yes. Busy, yes. Hard work, yes.

You can overcome anything if you don’t bellyache.  ~Bernard M. Baruch

Is that what complaining looks like?

I have no complaints. I was able to get through it. I  managed to get about 80% of what needed doing done. I’m not sure I did it well, but it’s done.

Are you wondering how  I plan to get through a day without complaining? I may be a chronic complainer (a typical symptom of NDPH I think), but I am fully aware of how to cut it out.

When I have the overwhelming urge to state how I’m feeling about something not so pleasant (I’m not complaining – see) I find something to be grateful for instead. Like a blue sky (ok, it’s gray here today) or a snuggle from my two-year old, or a smile on my dog. Yeah, I think she does smile. She’s rather expressive for a canine.

The world is so dreadfully managed, one hardly knows to whom to complain.  ~Ronald Firbank

I’m not saying it. I’m not going to state the obvious. If you know anything about NDPH, then you know, or can guess how I’m feeling today. I don’t need to keep repeating it, right?

If all else fails...

Maybe if I can get through the day without complaining, maybe if I can keep my head up and smile like the dog, maybe, maybe I will feel better. Maybe the people in my life will appreciate it too. Honestly, I think they are so used to it that it hardly registers anymore.

Words have power. I know they do, but it’s so easy to forget. I may not be speaking positive words over my life, but I’m going to do my best to not speak anymore negative ones either. Baby steps here.

Are you with me? Can you go a day without complaining about anything?

I will not be as those who spend the day in complaining of headache, and the night in drinking the wine that gives it.  ~Johann Wolfgang von Goethe

I sure wish NDPH was a wine induced headache… but that’s a topic for another post. And does that count as a complaint? 🙂