This is a friend of mines friend. This is what he emailed to me. Any suggestions on what hospital to go to for a second opinion or a doctor to see?

I just returned from the Cleveland Clinic last night.  I left Kathy in Lexington, KY with my mom and our oldest son and wife.  She will return to Cleveland on Sunday night for a three week treatment for pain.


She has been diagnosed with NDPH, (New Daily Persistent Headaches).  We chased a diagnosis in Bradenton for almost three months.  She became symptomatic while I was in Ecuador (August 3) and has non-stop migraine-like headache (24/7) since that time.  The neurologists here were convinced she had migraines and were trying to treat her for them.  However, our cardiologist (my college roommate) kept saying she was not having migraines and we needed a second opinion.  He recommended Cleveland Clinic in Cleveland, OH or Mayo Clinic in Rochester, Minnesota as a resource.


Within 40 minutes of our appointment, she was diagnosed.  The doctors there described four kinds of headaches.  1.  Stress and tension - the kind we all get from time to time.  2.  Headaches brought about by tumor, trauma or injury of some kind.  3.  Migraines and the families of migraines that fall under that description.  and 4.  NDPH - intense migraine-like headaches that do not end and for which there is no protocol of treatment.   The good news, he told us is that he could tell us what it is.  The bad news was that they do not know how to make it go away.


They can last from 2 to 3 years and all of a sudden go away; they can last for the rest of your life.  (aarrgghh!!)  He told us it's like someone crawls into your skull and flips a switch to turn the headache on, but then no one seems to know how to turn the switch off.  Narcotics are not effective in stopping the pain, nor is any other single treatment.


However, the Cleveland Clinic's treatment program for three weeks has been successful in achieving a 45 percent reduction in daily pain, offers coping mechanisms to re-enter life with the remainder of the chronic pain and get back to some ryhthm of living.  So she begins that treatment on Monday.  She will return home on November 6th.


The doctors here have prescribed 29 different medications to treat her prior to her arrival at the Clinic.  None of them have been effective.   


We are anticipating success with this treatment and praying for God's favor.  Kathy is on a medical leave of absence from work,


So ... that's the Kathy story.  I know you will continue to pray for us and for her.  Thanks!!


Ancil

Maybe someone at clusterbusters could help??

After I posted this...it hit me. I DID know someone who had NDPH along with clusters......Carrie!. I sent her a message on facebook with this same email. She knew exactly what she was talking about. I have sent her the info Carrie gave me along with Carries email to contact her if she needs any further info. God I love this family!!

Well Jimi, I wish I woulda hit ya.

I was also thinking of Carrie as soon as I saw NDPH but glad you were able to figure it out and get that info to her.  When in pain, time is of the essence!