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.
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.