A Sad Observation

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


Comments

A Sad Observation — 9 Comments

  1. As an avid reader of headache, migraine, disability, and chronic pain blogs, I think every voice is different and every perspective can help shed new light on a difficult situation.

    At my lowest, I can always check my rss reader and find a metaphorical hand to hold.

    • It certainly helps to know that you are not alone in your struggle and we all need support. I am amazed at the compassionate and inspiring people I have found online.
      I agree – every voice adds a new perspective.

  2. Thanks Stephanie for writing. Having things to read on sites such as these help me to keep going. I know I’m not alone.

    I’ve had this headache since mid-November, 2008. While it’s made life very different, I’m trying my best to not let it get me totally down. I suppose it’s good to allow myself to have my moments, but then take one more step and keep going.

    I do have a question for you. Do you think Dr. Rosen is worth the drive? I live in DC and could go up there in a day or so.

    Thanks

    • Hi Michael,
      We all have our moments when we get really down (I had one just last night). I’m glad to hear that you are able to kep going and push through it. That is so important when dealing with NDPH.

      Dr. Rozen is about a 3 hour drive for me – I’m guessing it would be a little longer from the DC area.
      It is worth it for me because (1) I’m really picky about doctors. I don’t want to be talked down to. I don’t think doctors are gods. I don’t want to deal with one who thinks he is! (2)I don’t want to waste my time with a doctor who is not up to date on possible treatments. In my opinion, the risks and side effects are rather high for many of the drugs handed out to NDPH patients. I need some one I can trust.
      I’ve only seen Dr Rozen once (2 weeks ago) and he was down to earth and straight forward about what he thinks he can do to help me. I learned more about NDPH from my office visit then from all of my internet research. 🙂
      Do you have a diagnosis already?

  3. Amy, I know you have suffered with NDPH for years. I just want to say that I am behind you and the hope for a cure! Medical research is at the top of my priorities, as well.

    Also, that photo of the Cavalier King Charles Spaniel is adorably cute. I’m just sayin…. 🙂

    Your friend, Steph

    • Hi Steph,
      Thanks so much for your continued support. I know that you struggle as well with maintaining your health and can relate to what I’m going through in many ways.
      Even though that puppy looks so sad, he makes me smile! Glad you liked him. 🙂

  4. Hi,

    Just stumbled onto your website. My daughter has NDPH – wish it were me instead. She has had it 3 1/2 years now. We visited Dr. Rosen and tried some of his suggestions – haven’t found the magic pill quite yet but we will keep on looking!

    A word of caution to my friends out there – Dr. Rosen told us this and we didn’t listen – DO NOT GET THE GARDASIL VACCINE!!! It made my daughter’s headache much worse (er) and she has new GI issues. I can only pray this is as bad as it gets.

    We are currently pursuing aggressive physical therapy and osteopathic medicine/maneuvering. Both practitioners seem to think if we can relieve some of the neck/muscle/cranium issues her headache will be at least improved if not resolved.

    My current worry…wisdom teeth removal. Do any of you have experience with that and NDPH?

    Please feel free to contact me if you’d like to talk… we’ve been at this quite a while and would be happy to share experiences…

    Susie Kelly

    • Hi Susie,
      Sorry for the delayed reply. I had all four wisdom teeth removed before my NDPH started. It was awful all on it’s own! I hope that it goes well for your daughter. I doubt that it will make it worse. I did have a tooth extracted about a year ago and it had little impact on my head pain.
      Thank you for the warning about the Gardasil vaccine.I hope all my readers avoid it.
      Please keep me up to date on your daughter’s progress with the PT and Osteopath. I am very interested in hearing how she responds to the treatment!

  5. Hi I was wondering if any of ndph sufferers would be willing to contact me if so that would be greatly appreciated! It would help if they are younger aound age 13 (i am 13) but any replys would be great! You can text me at 815-715-1301 thanks:)

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