Comments on: Can NDPH be Cured?

By: shellie

shellie — Sat, 26 May 2012 19:12:41 +0000

Ed, I wish my neuro would have tried some things like Doxy/Singulair combo. Check out information on Dr. Todd Rozen. He is well known as being a neuro with some limited success in helping patients with NDPH in the earlier stages.

By: Ed

Ed — Sat, 26 May 2012 18:41:19 +0000

Hi Amy:
Thanks very much for replying. I’ve spoken with my doctors about the Doxycycline but they dismiss it for some reason. I may need to revisit. I may also need to look into some of those other options like acupuncture, etc. Diet is a challenge for me now. The nausea makes it difficult to maintain calories let alone determine if there are any triggers.

By: shellie

shellie — Fri, 25 May 2012 16:08:47 +0000

I’m taking Cymbalta 3x/day. Looking into a neurotransmitter to be implanted

By: Amy

Amy — Fri, 25 May 2012 00:41:33 +0000

Oh my gosh, I’m so sorry! I thought it was a recent comment. Sometimes comments get past me. I’m so sorry to hear that you are still suffering. What are you trying these days? Has anything helped at all?

By: shellie

shellie — Fri, 25 May 2012 00:32:57 +0000

Amy- my post was in 2010, and I still continue to live with pain, 2 1/2 years later. Please anyone who has this awful pain, try what you can to get rid of it!

By: Amy

Amy — Fri, 25 May 2012 00:30:43 +0000

Shelly, I hope that the herbs will help. Let us know what you are taking and how it goes.

By: Amy

Amy — Fri, 25 May 2012 00:28:46 +0000

Hi Ed,
NDPH can diminish with time. I was told that some cases resolve themselves within the first year, but those that go beyond the one year mark are not as likely to just fade away.
I’m sorry that you are going through this. Unfortunately, none of the meds I tried helped me long term. The doxy / singulair combo was the most successful, but I could not tolerate the antibiotic long term, and found myself doubled over with stomach pain.
At this point I have just come off an antibiotic treatment for Lyme ( I was able to tolerate antibiotics other than doxy) and I am doing much better. I still have days that are bad, but for the most part, things are much better than they were the first couple of years that I suffered. ( I hit the 7 year mark in March).
Over time, I began to focus on managing the pain more than looking for a cure. The most helpful thing for me was changing my diet. I followed the Eat To Live diet and really got a clear look at what would trigger my pain. Even still, I avoid those foods (for me it’s sugar, chocolate, alcohol and soy) that increase my pain.
I tried everything from acupuncture to chiropractic to narcotics. I’ve heard from people all over the world with this condition. Some have found their cure, but it is always different. There doesn’t seem to be a one-size-fits-all treatment.
The information Cal shared, while it is negative and depressing, is the truth about the condition. My first neurologist didn’t tell me truthfully what I was facing. He acted like it was no big deal and he could “fix me.”
The bottom line is that NDPH is an awful diagnosis to be given, though it is not a death sentence. There is hope. You just have to keep trying, keep looking for a solution. I gave up for a while (years) and just lived with the pain but it damn near destroyed my life and my relationships.
If your first treatment doesn’t help, try something else. Keep looking for answers.
I hope that it will resolve for you quickly or that you will find a med to help.
Keep us updated and feel free to ask if you have any other questions.

By: shellie

shellie — Thu, 24 May 2012 23:50:59 +0000

Dr Todd Rozen seems to be the guru for NDPH- from what I understand, he tries patients on Doxycycline and Singulair- trying to knock it out of you fairly quickly instead of the wait and see game is recommended. After 2 1/2 years of waiting for it to dissipate, I wish I would have heard of this before

By: Ed

Ed — Thu, 24 May 2012 21:52:22 +0000

Good grief, that is really not helpful. Copying and pasting the most negative information from Wikipedia and elsewhere really starts things off on the wrong note. I’m asking Amy about her most useful treatments. Please allow her an opportunity to reply, thanks.

By: Cal

Cal — Thu, 24 May 2012 16:15:09 +0000

NDPH is typically refractive to all treatments and is considered the hardest headache to treat by specialists. In part, this is because it does not fall neatly into episodic migraine or episidoc tension headache categories. Little is know about its etiology or cause and there is little research. As a result, neurologists generally prescribe the exact same medication they give to people with migraine, i.e. tricylic antidepressants, anti-convulsants, or beta blockers. Unfortunately, many people with NDPH do not respond to these preventers. You might also consider in-patient admission for IV treatment of DHE 45 and or nerve blocks to the occipital nerve.

Headaches, like all idiopahtic pain conditions, can have a natural history and dissipate. Your headache is of recent origin, so it may simply pass. You would have to have an unremmitting headache for more than 6 months, with sudden onsent, to be categorized as a sufferer of NDPH.

Cal