Comments for Living with NDPH

Comment on Does Botox Work for New Daily Persistent Headache? by Andrée

Andrée — Tue, 29 May 2012 22:43:53 +0000

Hello

It’s now 2 weeks that I had the Botox injections. I can’t really say it gaves me relief but it makes a really big change for when I travel in car. My pain increased a lot when I was travelling more then an half of hour in car. It was terrible. But now with Botox I can travel for an hour or two and I only have my “regular” pain. But I only travel long ride 3 times since then and it was days with low pain.
But for the daily pain I don’t notice any change. I have hard days and better one and it’s not really différent then when I started Gapabentin (Neurontin). Hope to see better change in few days but I think it will be only that. I have my appointment for my seconde time and I think I will try it.

Here is my update!

Comment 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.

Comment on Can NDPH be Cured? 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.

Comment on Can NDPH be Cured? by shellie

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

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

Comment on Can NDPH be Cured? 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?

Comment on Can NDPH be Cured? 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!

Comment on Can NDPH be Cured? 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.

Comment on Can NDPH be Cured? 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.

Comment on Can NDPH be Cured? 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

Comment on Can NDPH be Cured? 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.