Sad observations on the reality of NDPH

I started this blog less than a month ago and I’m amazed at the response that I have received so far. I wasn’t sure if there was a need for it, aside from helping me sort out all the information being thrown at me.

I’ve been keeping an eye on my blog statistics and the search terms that are bringing people to this site. I’m finding it a little heartbreaking, to be honest. I know that the answers they are finding are disappointing. I hate to be the bearer of bad news.

Here are some of the terms and questions that people are typing into the search engines and landing on my blog (and a brief explanation):

• Cure for NDPH – There is no cure at this time. There is treatment and there is hope.
• NDPH doctor – I’ve mentioned my new neurologist who specializes in NDPH. Dr. Rozen is looking for answers to the mystery of New Daily Persistent Headache and is known for his research on NDPH.
• will NDPH go away / how long does NDPH last? This one was the hardest for me to see, because the answer is not encouraging. According to my doctor, some cases  resolve in a year (they don’t know why) and others can go on and on indefinitely. 5 years, 10 years, I read of a woman that had it for 30 years.

When I was initially diagnosed, I feel that I was misled by my doctor. His was very  optimistic. He didn’t mention to me that most people with NDPH are resistant to pain medication. He seemed surprised when the migraine standards (like Imitrex) didn’t work for me. It wasn’t until I found the MD Junction support group that I discovered that I am very typical.  Many people  have tried 50 or 100 different medications with little pain relief.

When you come to the end of your rope, tie a knot and hang on.

I’m not saying it’s a hopeless situation. I think that we (myself included) need to encourage each other to keep trying new things. Many people do find a solution. Many people do find a medication that helps them live a close to normal life.

We can not give up.

Things will happen in your life that you can’t stop, but that’s no reason to shut out the world. There’s a purpose for the good and for the bad.”
Crazy Pete

The following video explains exactly what New Daily Persistent Headache is and how it impacts a persons life.  The woman in the video finds a drug combo that works for her (after two years), but they do go on to say that some people suffer for decades with little relief.