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?


Comments

Just a Morphish Marfan — 19 Comments

  1. Hi! I don’t know much about NDPH, but I know a lot about Marfan 🙂 I’m glad you have found the NMF. Please don’t be terrified of Marfan. With treatment, we actually have a NORMAL average life expectancy…early 70s. You probably saw on the NMF site, but there are a few tests you need run to confirm a diagnosis. Have you had an echo or MRI of your entire aorta yet?

    I scanned your Questions on NDPH section, so I know it has to do with headaches. Chronic headaches are very common in Marfan syndrome, both migraines and spinal headaches (from a problem with the dura sac called dural ectasia).

    If you’re looking to get evaluated for Marfan, the NMF has a listing of Marfan clinics. If you’re able to go to one of those, that’s a good start. If not, the NMF might have local contacts who can suggest a knowledgeable doctor to you. Email Amy Kaplan, the NMF nurse, for more information: akaplan@marfan.org.

    Good luck, and please let me know if there are any questions I can answer for you. I even just wrote an article on my blog this week about questions to ask to determine how much your doctor know about Marfan. 🙂

    • Maya, thank you so much for this information. (Huge sigh of relief) I am feeling much better now about everything and not so freaked out! Much of what I read initially was terrifying – which is what happens when you consult Dr. Google.
      NDPH is a constant headache that never really goes away. I am not sure if it is similar to the frequent headaches that those with marfan suffer from. I imagine there would be a connection of some type, since so many people with NDPH (New Daily Persistent Headache) have these characteristics.
      I am going to spend so time at the MNF site and browsing your blog for more insights and direction as to what I need to do next.
      Thank you again,
      Amy

      • I wonder if dural ectasia could cause NDPH. Dr. Sponseller at Hopkins is the dural ectasia expert: psponse@jhmi.edu. I’m sure he’d write you back if you wanted to email him to see if there might be a connection. Good luck! 🙂

      • Hi Amy,
        Love the moxie, girl! Keep it up! I have the “MASS” phenotype (I have most of the characteristics of a morph, but possibly a different gene or mutation). My blood is at the connective tissue lab right now.
        Meanwhile, I think I can help you with your headaches. (And I’m a therapeutic optometrist who has written and spoken about this condition, so you’re getting some good advice, here. :))
        We are prone to the dural ectasias as described above and there are two things you can do immediately to help. First, try wearing a soft cervical collar at night (it helps prevent the kinking of our necks and allows the CSF to flow out of our heads more naturally). Assuming that helps, ask your doc for a trial of Diamox (acetazolamide). I’d start with 250mg at night, then 125mg in the morning and again after lunch. If a build up of CSF pressure is the cause of your headaches (yes, I’m willing to take that bet), you’ll know the first day. Headache gone, that fast.
        I’m lucky enough to have kids to experiment on also (ha), and my 12 year old son had pressure headaches (they radiate to the back of your head, and sometimes down your neck in a “wing” pattern) for 3 months, daily – gone after one night with a collar and Diamox.
        Talk to your doctor, but we are on the cutting edge of science here, so please keep looking for a doctor until you find one willing to listen and try…. It’s WELL worth it!

        All the best,
        Dr. Diana

        • Thank you Dr. Diana! I will try your advice and let you know how it goes. I may repost your comment in a spot where more people can find it, if that is okay with you! Solutions tend to be different for everyone, and we all just looking for our big break- from pain. Thanks again. 🙂

        • My doctor offered me a choice between Advil, Tylenol, or antidepressants. The first two don’t help and I don’t understand the third choice seems like an odd one. I can’t find any info about antidepressants being used to treat DE and I’m not depressed, just in a lot of pain. It’s been daily for six months now and off and on for four years.

  2. Amy, I am also a “circus freak” I can bend my neck back so far that I can see the opposite wall behind me and I can turn my heada like 5 inches farther than it should turn. Im freakishly flexible in all of my joints and Im tall, long, and lean. I was both a dancer and gymnast so I understand what youre going through. Dr. Rozen also told me that. I actually have a study that he published talking of the physical characteristics of NDPH patients and youre exactly right! Tall, long, lean, athletic, flexible. I dont have 2 inch glasses yet, but I have noticed my vision deteriorating rapidly over the past few years, what do you think?

    So, I guess we’re just two of a kind, us circus freak NDPH patients =]

  3. I believe I ran across your blog about 6 months ago, and today found myself back here.

    While my official neurological diagnosis is chronic migraines, I am 100% positive after time spent on research and living with this condition that I have NDPH.

    I’ve been living with this for a year and a half, which is basically a nanosecond compared to most. Pretty much since the beginning I’ve been on the anti-depressant route (afraid to try anything else because of the pain I might go through in the downtime between medications), and the past two months I felt so good that I thought maybe it was time to see if I could come off the medication.

    After less than 48 hours on a lower dose I’m thinking this wasn’t the best decision, which brings me back here.

    I read through a few of your “newer” posts, and I finally had to comment because I feel as if I wrote them. I get so frustrated on bad days because I no longer am willing to accept that no one knows why this happens or what can be done. I also have my good days and bad, and there are spans where I feel like I did years ago.

    Phew – and at this point I think I’ve laid enough on you. I just want to thank you for starting this blog. When I first discovered the initials NDPH I could find limited information about it, so it’s wonderful to see someone actually reach out to the rest of us. I plan to check back regularly, and hope to hear about more good days from you. 🙂

    • Hi Vanessa, sorry for such a late reply. I hope that you are doing better. I’m glad you found me here, but am sorry that you are back in pain. You are certainly not alone. 🙂
      There are still a lot of ups and downs for me, but after 5 years, I am mostly trying to get back to living life as best I can and honestly, I try to ignore the situation. I know that this may not be the best plan, but it is working for me now! The pain is there, I just don’t let myself get upset about it. It still gets out of control from time to time, but the day to day is tolerable for the most part.
      I hope you are having a pain free day and please keep us updated on your progress!

  4. July 2nd will be my 4-year anniversary with ndph. i laughed when i read this post, as i have laughed when reading most blogs mentioning dr. rozen. he seems to have a script for his ndph patients as it seems he tells us all pretty much the same things. i am of average build, normal height and weight, but i do have a long neck. my pain seems to stem from my neck and the base of my skull, and dr. rozen did tell me that women with long necks are more prone to these headaches because of their hypermobility. in my case, it does seem to make sense, but being long all over seems less directly related to head pain.

    i’d also just like to say how excited i was to meet dr. rozen. he has such a wonderful reputation, and when you meet him, it’s quite clear that he knows all about this disease that so few dr.s – even neurologists – know anything about, however i have been so disappointed by him. i’ve been a patient for nearly a year, and there has been no improvement whatsoever. i know that my case is considered highly treatment resistant, but i get so frustrated with him. i felt as if he were my last hope for any kind of “cure.” he clearly doesn’t believe in giving you a better quality of life if it becomes clear that preventative medications aren’t going to work. i had such high hopes for him, and i feel i should’ve known better after the string of nightmarishly bad dr.s i’ve seen, but regrettably, i’ve been let down again. i do believe he could be successful in helping people who are less treatment resistant, but i wish when he was dealing with me, he’d be able to do more than look confused.

    good luck all!

    • Hey Emily,
      I’m so sorry to hear that you were disappointed with Dr. Rozen. I think people act like he is some kind of miracle worker, but he is not. Unfortunately, he doesn’t have a solution for us.He has a few different things for us to try, but he never made me any promises. He also doesn’t have the funding that he would need to find a solution, and I do think that he would be able to make some progress if given the opportunity.
      The future is not positive for people with NDPH, from a medical standpoint. Once you have exhausted finding all the possible causes, it is simply a matter of pain management. And I think that it takes years for us to get to that point, and the point of accepting it.
      I hope that you find a treatment that is of some help soon. Please hang in there. You sound so frustrated, and I understand why. Check in soon and let me know how you are.
      Amy

  5. The majority of people with Marfan Syndrome have dural ectasia, which causes migraine “like” headaches. I’ve had daily headaches for six months now. Lying down helps.

  6. I had a heart valve replacement at the age of thirty-one. I am now 65 in a month. I have three daughters and four grand-daughters. Only one of my daughters has marfan’s and none of my grand-daughters.I have had many physical problems over the years but have had a good life so far. I taught school elementary for 32 years.

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