Young Boy Cured of NDPH

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.


Comments

Young Boy Cured of NDPH — 19 Comments

  1. How wonderful to read such a touching story about the wonderful benefits this young boy gained from craniosacral therapy (CST). I’ve been using CST in my practice for 24 years now and have seen many patients find successful relief from their conditions that the medical profession otherwise “wrote off” or said they just “had to learn to live with it”. Not true!
    With the proper training, the CS Therapist learns a deep, intuitive touch and contact with the patient’s body. There is MUCH help to be found with CST if the patient is willing to be consistent with treatment sessions and sometimes lifestyle changes.
    Like this article said: Sometimes you just have to keep trying and look around at other alternatives.

    Thank you for such a wonderful article and hopefully, it has touched many lives.

  2. Great to hear. Sure wish we’d see more people with NDPH have great success like this young boy had. Thanks for sharing it. Hopefully there will be more great successes like this. Like you said hopefully our NDPH cures are out there. Take care.

  3. Thank you so much for sharing and giving us another avenue to pursue in hopes that my 13-year-old can return to a normal, pain-free life.

      • Finally tried craniosacral massage and brought my daughter’s pain to a 4 out of 10 (the lowest it’s been since it started!). Needless to say, we are scheduled for another session along with chiropractic manipulations and feel very hopeful for the first time in 10 months!

        • My 14 year old daughter has been dealing with this illness for 25 months and yesterday her headache was gone!!!

          Traditional medicine had it down to daily headache of a 5-6 in pain with frequent migraine spikes. I took her to a friend to learn relaxation techniques and she tried cranio-sacrial therapy and there was an immmediate drop in pain. A month later after 4-5 additional treatments combined with accupressure, some mouth work, and reflexology her headache is gone.

          Keep the faith, there is so much bad news on the internet about this illness and what works is very individual but PEOPLE DO GET BETTER!

          • Please give me the contact info on the therapist who did those cranio-sacrial treatments, please. My 15-yr-old has suffered ndph for 2 yr now. Thank you so much, and wishing you the best. Sue F.

  4. Does anyone have any way of getting in touch with Dara. I believe we are located nearby (DE, just outside of MD) and we are desperate to find her healer for our son. He has had cranial sacral therapy, but I believe every practitioner is different. ALso, if Stephanie is anywhere on the east coast and can provide specific information, it would be wonderful. Amy, Please feel free to pass along my email to Dara if you have it.

    Also, I wish to share with all of you that doxycycline seemed to help my son, but he could not tolerate the stomach upset, even with probiotics. If you can tolerate it, I urge you to check out the studies (they are small, but effective) 100 mg/2x/day. I hope it will help some of you.

  5. My 16 year old son too was diagnosed with ndpd and P.O.T.S. syndrome . He has not been to school in months and can barely able to get out of bed as the headaches are unbearable. He has been on medications: Effexor, Elvail, Fludrocortisone, Prednisone, Topamax, DEH, Migranal, Maxalt and countless other medication with no relief. After searching websites and reading lots of articles, I came across the article about the boy cured with cranial sacaral therapy (CST). I looked into CST for my son and found a therapist where i live. Today was his first appointment headaches went from scale of 8-9 to a 4-5 in a 50 minute session. We are please with results today and are looking forward to his next visit. Will keep you all updated. My heart goes out to anyone with this horrible affliction. I will continue to keep the faith.

    • Hi Rona! Did you ever get the name of a good craniosacral therapist? Just tried one in NoVA yesterday – no change to report but going back for more appts. We are also trying Botox with ped neuro in MD.

      A cardiologist at Children’s Nat’l said he thought my son had POTS, but lost some credibility with his reasoning and lack of supporting evidence from other tests, and my son was on so many meds the rheumatologist said it was lyme cauing that one POTS episode. I figured it was the all meds. So I chose to finish the lyme treatment we were in the middle of and seek out experts in fields other than cariology for our NDPH cure.

      Also, an infectious disease MD told me about a new headache treatment – surgically running balloon through neck veins to clear biofilms out. Said 4 people were cured of headache, 4 had some improvement, 2 were no better after surgery. Am trying to learn about this but sounds too scary an option.

  6. POTS is easily classified by a more than 30bpm HR upon standing for 10 min after lying down for a period of time (best checked in the a.m. upon waking) or over 120 bpm standing HR. A tilt table is not as accurate. One day a child can pass and the next day, or even hours later,fail. If your child is on a beta blocker, it is not possible to get accurate HRs for a diagnosis.
    That procedures does sound very risky. I have never heard of it. We do not have a cranial sacral specialist. If you would like to message privately, send your email info or is there a way through this group? It is not a very active group. I got an email stating there was a message.

  7. Just saw your post, Rona. Thanks. Have found some pain relief with combo of indocin, hypnosis and ketamine infusion. Please, please does anyone have the name of successful cranio therapist? Have tried a dozen, so much money and time, none effective, all made promises. Am in dc area but willing to travel. Thank you so much for help. Sue

  8. We just tried the craniosacral therapy this morning since now the topiramate doesn’t seem to be able to keep the pain under control. My daughter actually is in more pain after the therapy, it actually aggravated the headache. Not sure what else to do but am just desperate to get her some relief. Been over 15 months now.

Leave a Reply