New Daily Persistent Headache Support Group

Aloha! Liz here and new to the group. I thought I would share with you all what I did last week. I contacted the producers to Dr. Phil and Oprah. As an RN I feel compelled to educate the public and what better way than through two very popular talk shows. I figured since no one here in the islands knew what I had (one neurologist sub-specialty 'headaches')another neurologist said, "I have no idea what you have!" And multiple other physcians' as well, I figured that not only the general public would benefit but physician's as well. My 'headache' pain started Feb. 1 2007 and it took until July 28, 2008 (Mayo Clinic) to get an accurate diagnosis and treatment regimen. For a year and a half this pain persisted despite all 'negative' test results. The pain is soley in my eyes and the crazy thing and most comfusing is that I wear a prosthesis in my left eye. Talk about going nutso!! I feared I was at risk of losing my eye sight. For the last year and a half, I have never been so scared, depressed nor has anything sucked the life out of me like this. My baseline is a very high energy, fun, middle aged woman who adores every minute of life and loves to work. (Currently on SS/ perm disability). I am sure there are other sufferers out there who have not heard of NDPH. I have read many stories where when NDPH is described it fits them like a glove. My hope is that we can increase the awareness to this awful and debilitating syndrome and one day find a cure. I will keep the group posted if I hear anything back from the producers. Meanwhile, I would really appreciate friendship, fellowship and emails from any and all of you. It gets rather lonely on this rock (Oahu, HI). Kind regards. Aloha Nui Loa ~ Liz

I just had to post. I am at work and been suffering so badly today that I just wanted to crawl under my desk and disappear. I also suffer from migraines and ... that's what has struck me hard today. I've taken so many pain meds (including an injection into the stomach) today that I'm groggy and almost unable to work ...yet I have no choice. I'm the only professional to do the work and literally millions of dollars are at stake. Part of me just wants to run and the other gets stinkin' mad because there is no reason why we haven't found some form of relief yet.

I just wanted to say thank you for taking this new step. Taking any creative step to get media attention and a possible solution is a good step forward. There is no telling when someone will come up with an idea that will help some of us. I doubt one solution will be a total cure for everyone -- but if it helps just a few -- it will be worth it.

Kristi

It would be awesome if one of these shows mentioned NDPH! I know there are tons of doctors and even a lot of neurologists who have never heard of these headaches to say nothing of the average person. I have often thought that Dr. Phil should do something about people dealing with chronic pain (and of course he should include us).

That is great Liz and hopefully someone answers you.

The youtube video I posted (susangf's interview from Seattle)turned up someone who saw it so I will tell them to come to the forum.

welcome! i am so glad youre taking those steps.

Lizrod, thats a great idea! And thank you so much for your prayers--you are in mine,too...

I guess the producers never heard back from you. What a shame.

Hello Lizrod!

My teen was diagnosed with NDPH just before Thanksgiving. She's been sick since September and has missed about 10 weeks of schools so far.

We're worried that there is an underlying undiagnosed cause such as Lyme disease.

Do you have the Ken Mack paper?

Best wishes,

Jensen16

a very worried and scared mom.

It's been a while since I've posted regarding my daughter's condition. We left Dr. Singer months ago and instead went to Children's Hospital and have found some relief with weekly visits for Cognitive Behavioral Therapy/Biofeedback. Her headaches went from around a 7 daily down to a 5 or 6 and hoping as she learns the biofeedback techniques that she does on her own daily it will improve. Also visiting weekly with a therapist, too much internal suppresion of negative things which talking with the therapist seems to be helping. She lost a year of high school but is planning on making it up through the running start program which gives college credits to mandatory high school classes for graduation. So things are definately looking up. I am so glad to hear Rhonda that the surgery went well and hope that things improve as well for your daughter. Wishing lots of pain free days ahead for Everyone here!!

It would be great for them to bring this up or even Dr. Oz but there seems to be no one answer to NDPH. My daughter stopped the Topamax as it wasn't helping, lots of drugs we stopped since they weren't helping. Even her sleeping pills (Lunesta) no longer works for her insomnia. The biofeedback and a sleep sound machine have worked much better than any drugs. I even got one for myself, I love to fall asleep and wake to the sound of gently falling rain or the ocean.

Post edited by: KarenLynnD, at: 01/01/2010 12:33 PM