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?

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.

.

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.

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

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?

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?

I

I knew it was raining Tuesday morning before I even opened my eyes. I couldn’t hear the rain, but I could feel the pain that the rain always  triggers. It happened again today.

I need to move to a desert oasis, free from humidity and moisture. Really, I do.

I want to tell you that I had a great week, because I did, aside from the pain. Two high  pain days isn’t that bad (right?). I did find myself huddled on the kitchen floor at one point, but only once, and it was from stomach pain that I suspect was the result of the meds. I stopped the Doxycycline and the pain went with it.

So what was so good about this week? Well, I entered a contest to be The Good  Mood Blogger (please take a moment to vote for me ). My friends and family have pulled together for me, bringing in close to 400 votes at last check! I need to stay in the top 20 of applicants to make it to the final round. At that point, I will have to make a video of myself and submit a resume and writing sample.

Truthfully, it is incredibly difficult to be in a good mood when dealing with constant pain. I’m still here. I’m not giving up and I’m smiling as I write this, even though I feel like someone is hitting me in the head with a hammer at the moment.

It is amazing to me, what can be tolerated.

All the world is full of suffering. It is also full of overcoming. – Helen Keller

I do have a secret. it’s one you have heard before. Gratitude. I know it may be hard to find something to be thankful for when you have NDPH. I KNOW. Look harder. Look more carefully. The more you can be thankful for, the better you will feel emotionally. It will strengthen your resolve to go on and to keep fighting your battle.

So this week was a good week. I will deal with the rain and humidity. Just dreaming of my desert oasis will have to be enough for now.

I am thankful for all of the incredible support I’ve received over the past days. It means more than anyone realizes. I am so thankful to my readers as well. Thank you for reading, commenting and for all the emails. You have made this little site a success by visiting.

I am here for you, to support your in your struggle, whenever you need me.

All you have to do is ask.

To learn more about the practitioner featured in the video, see thaivinyasa.

See my previous post for more information about other forms of massage therapy for NDPH.

Cute little Min Pin all dressed up.

Since I refuse to keep a daily pain diary (daily bringin’ me down diary) I’ve decided that I will at least take a look at how I’m feeling on a weekly basis.
Since I also suffer from mommy brain (an inability to remember random and not so random life events) my weekly NDPH update will hopefully not be too depressing.

Basically, if I don’t remember being huddled up in the fetal position on the kitchen floor in pain, it was a good week.

So this was a good week. I think. Well, wait. Monday was really awful, now that I think about it. It was the last day of a bad 3 day high pain spurt.

Today, I’m doing well again. Headache is around a 2/10.

So, the big question is: Is the Doxycycline / Singulair working for me? I’m not sure yet. It hasn’t been a full two months, but I have adjusted to being on it and no longer have any bothersome side effects, as long as I only take it once a day. Twice a day and it really starts to give me trouble.

I’m such a sensitive girl.

I’m actually feeling well enough to write again, at a more consistent pace. So for me, if I can manage my life, kids, house and still find time to write a little (preferably a lot) then I would say this treatment is more of a success then I expected.

I just want my life back.

This little min pin pup wants to live with me. I just know it.

Here’s the downside. When my pain gets really high, like on Monday, I don’t handle it as well as I have in the past. It’s as if being pain free has actually weakened my ability to cope with the pain physically and emotionally.

I get ticked off, to be honest. As in  WTF is this pain doing here. It’s all about fear. I’m afraid I won’t have those good days again, that the meds aren’t working at all, that I’m going to feel horrible every day for the rest of my life.

I snap out of it as soon as the pain dies down. I rarely felt that way in the past though. I was always able to accept and move on a little bit better.

A side note: Since I posted cute puppy pictures in a couple of previous posts, I thought I would share pics of  a breed I simply adore(but would not dress up): the miniature pinscher (or min pin). I had to stop myself from adopting one this week. I already have a very complete animal family here at my house, including a 100lb+ Labrador sweetie…but I think she might be lonely.

Happy puppies...

I really want to share some words of encouragement, because I need a little lift and my previous post  (a sad observation) depressed me. Sad puppy topped it off.

So today I will be sharing the inspiring words of others. And happy pups. I hope you enjoy.

Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength. – Unknown

New Daily Persistent Headache is tough. I think it’s an awful diagnosis. Living with it could break you. Putting yourself back together again and living your life through it takes great strength. Pat yourself on the back for trying. Be determined to be stronger than NDPH.

To wish to be well is part of becoming well.
- Seneca

If you are feeling low today, know that you are not alone. If your pain is off the charts and you just don’t want to go on like this, you are not alone.  Your headache may seem overpowering, but you are stronger. If the thought of trying just one more medication makes your stomach turn, you are not alone. Try it anyway.

Hope is like a bird that senses the dawn and carefully starts to sing while it is still dark. Anonymous

On a high pain day (like today), I get discouraged. I start wondering why I even bother trying to find a solution, an end to the pain. It seems even worse today, because the past few weeks have been wonderful for me. My pain has been low enough for me to do whatever I want or need to do. People around me have even noticed that I look better, healthier.

The pain may be back, but now I have a taste of what life would be like without it. My head may hurt now, but I will not let it get me down. My life is waiting for me. And so is yours.

Never give in, never give in, never; never; never; never – in nothing, great or small, large or petty – never give in except to convictions of honor and good sense – Winston Churchill