The following story is from Auli Peltonen in Finland:

“Hi Amy and all people who suffer severe headaches every day!

It’s been just about six months ago when I healed from my daily, terrible headaches and now I feel up to sharing my story;

Just like everybody who suffers this awful condition of headache, every single day, some days you can tolerate it and some days you just want to jump from the roof.

I had my headaches for 188 days and that felt so terrible, I wouldn’t wish it for my worst enemy.

Well, you all know what I’m talking about…

From the beginning, I was very eager to find out what’s causing this pain, saw so many doctors I can’t even count them anymore, tried too many medications, some of them made me feel even sicker, tried acupuncture, massage, exercise,

all different doctors and medications…nothing helped!

I was told by chief physician that they can’t do anything else for me but try different medications and hope something would help. I was totally depressed and amazed by the fact that they “turned their backs” at me.

I was supposed to stop gradually one medication and start a new one, then I decided to have a little break from medications;

I felt that I was pumped up with all these meds and wanted to cleanse myself for a while before starting a new medication again, I figured it couldn’t hurt me since headache was there every day anyway…might as well take a tiny break.

AND THAT’S HOW I HEALED!!

After I stopped all medication, it took about one week for all the other side effects to go away and suddenly I woke up one day and didn’t have any headache!!

The feeling was so unreal, I bet you can all imagine how amazed I was…”listening” to my head, when would it start again. One day pain free, then second day pain free, third day…

Now it’s been a little bit more than half a year of pain free life 

It took quite a while for me to realize that this is normal state, headaches are not coming back, I can finally live my life again!!

What I’m trying to say; try to be brave, loose the medications totally for a while, give your body some healthy times without any meds and hopefully your head will thank you like it did to me.

What do you have to lose?

I wish you all better times, be critical, doctors are not always Gods.

-Auli “

Is a book on NDPH needed?

I’ve been toying with the idea of writing a book about New Daily Persistent Headache for years.  There doesn’t seem to be one clear place to find information about it, and advice is scattered around the web, in forums and on a few random blogs.  I would like to write the book that I wish I could have read when I was first diagnosed.

I have recieved countless emails over the past two years from people all over the world suffering, looking for help and support. I’ve collected dozens of stories, many similar to my own.

I need more! If you would like to share your story, or be interviewed for the book, please contact me in the comments below or via email. I’d love to hear more about your thoughts and struggles, the medications you have tried (successful or not) and the alternative therapies you’ve explored. I want it all.

The focus would be on personal stories as well as treatment options.  I’m hoping to consult with a few well known neurologists that treat NDPH.

What are your thoughts on this? Suggestions? Ideas? Please share your opinion in the comments section and participate in the poll below.

As always, wishing you a low pain day,

Amy

NDPH has no known cure.

NDPH success stories are few and far between. It is rare that we hear of someone getting 100% better. I recieved this story as a  comment recently on an article I wrote about NDPH on Hubpages. I thought I would share it here as a full post, with the hopes of helping someone out there.  He used Cranio-Sacral therapy, which I have written about before and have some experience with. Although I have heard some NDPH suffers say that it didn’t work for them, it is certainly worth a try.

“My son (11 years old) caught a virus and developed a headache on January 11, 2010. His symptoms seemed to be ‘strep like’. He had an upset stomach, a rash on his tummy and headache. His strep culture came back negative but was treated with an antibiotic for 10-days. After the 10-days, the only symptom that remained was the headache. Then he was tested for Lyme Disease. The test came back negative, but the pediatrician put him on doxycycline anyway. After 10-days of doxy, his headache was excruciating.

Another trip to the pediatrician and they sent him to the emergency room for a spinal tap. Spinal tap fluid tested clean – no sign of infection. Ordered a CAT scan – came back clear. Admitted to the hospital for high test drugs (DHE-45 primarily) and they were treating it like a migraine. The headache did come down in intensity, but was not eliminated. We began seeing a Pediatric Neurologist who continued to try and treat him with several different migraine medicines (many…including Maxalt and Amitriptyline). We went to neurologists at Hopkins, Children’s Hospital, University of Maryland Medical Center, the MidAtlantic Headache Clinic, and Sinai Hospital searching for a diagnosis and treatment plan. He had an MRI and an MRA/MRV – all of which indicated nothing abnormal.

On March 10, 2010, he was diagnosed with New Daily Persistent Headache. We began treatment with Topimax and slowly and methodically ramped up to 150mg – but there was no relief.

His headache got worse every day with no periods of relief, and when it became unbearable we’d go to the hospital for a few days of DHE. He also began experiencing a heightened sensitivity to sound and developed phonophobia. He started wearing noise cancelling headphones and soon became addicted to them…needing them all day and even slept with them on. Any noise became very painful , and he wanted total silence. We finally began looking into alternative medicine. We started having an acupressurist come to the house. She provided him some stress relief and relaxed him a bit so he could sleep better at night.

Then we saw an alternative medicine therapist that performed Craniosacral Therapy (http://www.integrated-therapies.com/Therapies/cran) On May 3, 2010, he had his first Craniosacral Therapy treatment. His headache drastically improved after the first treatment. His headache was gone after the 2nd treatment on May 6, 2010. After one treatment for his hearing, he was able to take off the noise cancelling headphones. The therapist (who we refer to as the ‘healer’) continues to work with my son on the hearing sensitivity as he needs to retrain the cochlear nerve in his ear to regulate sound again. I should also mention that the alternative medicine therapist reviewed the MRI (that 5 different neurologists had already reviewed) and showed us his collapsed eustachian tube (which contributed to his hearing problem) and tissue at the base of his head that was ‘twisted’ and under ‘tension’. Why did none of the neurologists see what she saw? Our healer said they look for different things…like cancer, shadows or tumors. She looked for structure and was able to prove using the MRI the things she described and felt during her craniosacral therapy treatment.

He has his life back. After spending 5 months at home, not going to school, seeing multitudes of specialists and 2 hospital stays, he is finally returning to normal.

I write this post to hopefully reach people who can benefit from our story. When he was diagnosed with New Daily Persistent Headache, I surfed the web and read many a blog with sad stories with no happy endings. We are fortunate to have found treatment that worked for us. We hope that this information is helpful to you and that you too find relief from your headache.”

Thank you to “Dara” for sharing the story of your son’s struggle to inspire and help others. I think this story shows that we should never give up, no matter how many different treatments you have tried. Hopefully my NDPH cure – and yours – is out there.

We just have to keep looking for it.

The following video illustrates a self-treatment method. It will show you how to find the still point and allow your system to reset itself, ideally easing your head pain. This can be done at home, using tennis balls, according to the instructions in the video.

If you are interested in using cranio-sacral therapy to treat NDPH or migraine headaches, seek out a certified professional.

To learn more about the practitioner featured in the video, see thaivinyasa.

See my previous post for more information about other forms of massage therapy for NDPH.