New Year, New Diagnosis

Chronic Pain

On New Year’s Eve, my doctor called with the results of my most recent blood tests. The past few months have been difficult for me. In addition to the headaches, I began getting twitches, buzzing, creepy nerve feelings in my legs, then my arm, then my face. And the mind fog…which I just assumed was a progressive stage of mommy brain…has become worse.

I found a new doctor, thinking this was most likely unrelated to my headaches and didn’t feel that I had any time to wait to see Dr. Rozen or the ability to drive myself across two states feeling this way.

The new doc  sent me for blood work, including a test for Lyme. In the almost six years that I’ve suffered with NDPH, I’ve been tested for Lyme at least three times. I remember sitting in my first neurologist’s office and telling him about the strange rash and the leg pain.  The leg pain often increases with the head pain, though not always.

I remember discussing Lyme Disease with each doctor along the way.

This time, I tested positive.

Initially, I thought that this must be new. I must have been bitten over the summer. But the more I read, the more I think about it, the more I wonder if Lyme has been the cause of my headache all along.

I keep looking back at the past six years of my life. I’m at a loss for words to explain what I am feeling. There is hope, regret, anger and fear all wrapped into one.

The hope of being free from head pain, completely, for real, is rising up in me, offering me  a life that has been gone for so long. I realize I’ve been squashing this hope for some time now, tired of the constant, continuous disappointment that comes with trying new medications or alternative treatments.

The reality is that Lyme Disease is no picnic either. It isn’t always a simple treatment, but at least you know your enemy.

I don’t have many answers right now. I think this is good news for me, though I am not entirely sure.

I guess we’ll just see how things play out from here. I started treatment late on New Year’s Eve and I hear it takes a fair amount of time to begin to feel better.

Is it obvious that I don’t feel like myself?

If you have NDPH, have you been tested for Lyme as well?


Comments

New Year, New Diagnosis — 19 Comments

  1. Good luck with your journey of healing! We found that my daughter was misdiagnosed and she is now pain-free after a year of suffering. The road to recovery, for all of us, was emotionally very difficult and filled with both joy and anger! Best wishes for you as you begin a new path!

    • Thanks Virginia. What was your daughter finally diagnosed with (if you don’t mind my asking)? Was she originally diagnosed with NDPH?

      • After reading your article on the young boy who was healed from cranial-sacral massage, we began seeing a chiropractor, who could also provide these services. The doctor immeidately identified that her occiput was dislocated in her neck. After three months of both chiropractic manipulations and cranial-sacral massages, she is pain-free! And, yes, she had been diagnosed with NDPH and had been on a lot of medications.

        • That’s amazing and wonderful! I need to put together another post about this, because I’ve heard from several people who are having success with cranio-sacral therapy. It’s great to hear that she is pain free now! 🙂

  2. Good luck! I’ve had ndph for 6 months now, ive been tested numerous times for Lyme but always comes up negative… Im going to try Dr. Rozen to see if there is any relief in the antibiotics he gives, if there is, then most likely I have the disease. Did you do a different test this time? And I’m not sure if you said it in your blog, but was the treatment Rozen was giving you working but you had to go off of it, or it stopped working? Will this be the same treatment for Lyme for you?

    • Hi Sarah – My treatment for lyme (at this point) is almost identical to the meds Dr. Rozen had me on (which I did very well with for about a month, until my stomach rebelled). I’m currently taking 100mg of Doxycycline twice a day. My headaches haven’t changed to much and I’m actually feeling a little worse, but that may just be part of the process, so I’m trying to stay optimistic.
      I’m not sure which Lyme tests I took a few years ago or just recently. There are several out there and even the best, from what I’ve read, only catch the disease about 40% of the time, so keep getting tested if you are suspicious!

  3. Amy, im very new to all this stuff, but from what i’ve heard, if you’ve had this for 5 years, you might need a more aggressive treatment, or might be more interested in learning of the other kinds. I’m not sure if you are familiar with the online Lyme disease support group but it is very helpful and informative. It is certainly worth a look. You might be interested in finding a lime literate md in your area. Most doctors know nothing about lymes disease and how to properly treat it. Then again, that might be exactly what you are doing, but if i can help someone! They have helped me find a doctor so hopefully i can have proper testing and find a reason for my headaches 🙂

    http://www.mdjunction.com/forums/lyme-disease-support-forums

  4. I did take a look at the support group a few days ago and felt overwhelmed by all the info! I am in the process of finding a lyme literate doctor. I’m waiting on a recommendation from a friend. I think you are right, and that I probably need to be more aggressive with the treatment.
    Thank you for the link -I will definitely head over there for more info. I hope you find a successful treatment soon! 🙂

    • Thank you Chris! I am hopeful that this will be the answer and I will be successful in overcoming Lyme / NDPH. I want my life back!

  5. I really like your writing Amy, its straight forward and full of insight. I hope the Lyme treatment does the trick. I just had that test done waiting for the results. I would do anything to “know my enemy.” I feel like there has to be a cause for my constant headaches and a treatment that doesn’t involve pain management drugs (the side effects are frightening and they never seem to address the cause). I’m coming up on a year now of suffering and I’ve tried so many things. I’m curious to hear how your treatment goes so I can try the same if it works.

    • Thank you Hugh, and I apologize for the delay in my response. It’s been an interesting (and difficult) couple of months here for me.
      Let me know how things work out for you, and if you suspect that you have Lyme, please find a Lyme Literate Medical Doctor!
      Hope you are having a low pain day-
      Amy

  6. Very interesting diagnosis after all these years. I wish you all the best.

    I came across this post on MD Junction from R. Steven Singer MD out of Kirkland, Washington. He is neurologist and headache specialist and has bout 100 patients with NDPH. He has some very interesting comments. Please feel free to share with other readers.

    http://www.mdjunction.com/forums/ndph-support-forums/general-support/2380526-my-continuing-committment-to-ndph

    • Thank you for sharing this Michelle! I would like to share it with my readers here and am hoping to post some of this information soon.

  7. White Flower Oil (embrocation.50webs.com) was introduced to me by my mother. During one of my headaches, she gave me this tiny bottle of oil and told me to massage it on my temples and forehead. Amazingly, it worked! Somehow the oil penetrates into the affected area and relieves the pain.

  8. I am so happy that you finally have a correct diagnosis! I have had my headache since June 2008. I too have been tested for Lyme but didn’t have enough bands positive to get that diagnosis. I am stuck with the label of NDPH… although I think it’s just because they can’t pinpoint the real cause. Good luck with your treatment and keep us posted. Your story gives me hope that one day I will get the right diagnosis. Take Care.

    • Keep searching for a solution, Kim. I had given up for a while there myself, and I understand the hopelessness and the discouragement that comes along with getting your hopes up every time you try something new.
      Hope you are having a low pain day today-
      Amy

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