New Daily Persistent Headache Support Group

As mentioned, I had done everything to help my NDPH which started January 6th. I have an appointment on June 16th to be hospitalized in Michigan after being hospitalized at Diamond, but I do not think I need it. Keep your hopes up. I have been headache free for the first time in over 150 days for four days straight with an increase in my medication. I tried to take a chance and not take medicine for a night and it was a disaster. I am not a fan of taking the medicine because of the side effects, but will if this is what it takes to be able to function.

Hang in there. Let me know if you have any questions.

Although any headache doctor could have given me medicine, the nice thing about Diamond is you pay $250 upfront for unlimited emails and calls to your physician and nurse for an entire year. This made it easier so I could increase and decrease my doses by just emailing my doctor and getting new abortives as soon as one didn't work.

Wow! Four days headache free!!! That is awesome! Do you mind telling us what med (or meds) you are taking and what dose has ended up working for you? It is always wonderful to hear of someone who finds something that actually works for them, even if you do have to keep taking it. Thanks for letting us know that something is working for you.

Sure, I am on Nortryptlyine. I've been on it for over two months, but have it up to 50 mg now. I tried to bring it down to 30 mg one night, and my headaches were back in action. I heard that Elavil is better for headaches, but I had major heart racing with Elavil. I have it with Nortryptlyine too, but it's not as bad. I am also taking Baclofen, which is a muscle relaxant. I found peppermint oil useful as well for tension headaches, which I rub on my left temple. My only fear now is that my body gets use to the medication and stops responding to it.

Oh my goodness, that is so awesome! Congrats pekkle! I REALLY hope it stays this way for you. Try not to settle on your fear and really embrace the positivity that YES, your headache CAN go away!

wonderful news.

That is so great! Awesome news. And thanks for sharing what is helping you.

I hope those meds will continue to work for you!

Post edited by: kolle, at: 05/27/2009 01:21 AM

That is great! I really think NDPH has a strong similarity to chronic fatigue syndrome and nortirptyline helps that. Idk, but there are so many similarities. I personally have every symptom of CFS, does anyone else?

JRZ, Ryan doesn't have all of the symptoms, but he has several of them. Maybe he should try nortriptyline.

I actually told one of my doctors that I thought I had CFS as well and he told me he thought it was just all the medication I was on...

I wouldn't be surprised if NDPH and CFS overlapped in a lot of people because persistent headaches make you so run down.

I have a few symptoms (mostly how tired I get, but not the muscle or joint pain parts...it does take me a long time to recover from things), but I am also on a bunch of meds that can cause tiredness so I have no way to tell how much is from the headache and how much is meds....not giving up my meds to find out though!

I wouldn't be surprised if there is significant overlap there either, particularly if the exhaustion persists when you aren't on any meds.