how to live with it...

I'm new here so bear with me...

I chose the heart icon. It's does'nt mean that I love NDPH ;o)- but I've learned to live with it.

I've had it in 3 years but was not diagnosed until early 2007.

I've tried several drugs with no effect what so ever until the specialist who diagnosed me suggested that I should try Amitriptylene.

This drug has worked wonders for me and today I'm able to hold at regular job AND still have a real life in my spare time as well. I the beginning I could only just handle my job and when I got home I would be totally worn out.

If you have been diagnosed with NDPH and have not tried this drug I would recommend that you try it (if what you getting now dose'nt work). I take 60 mg per day. And it's easy for me to live with the side effects compared to living with the constant headaches.

All the best to you and I hope that you all get better.

Best regards

HowtolivewithNDPH

N.B. Does any of you know anybody who has been cured from NDPH?

You are the second person that I have heard of who has been able to return to pretty much normal functioning while on amitriptylene by the way. (Britchick being the first...unfortunately for us it means she isn't here as often, but that is great for her). I know it doesn't work for some people, but at least for the two of you, it sure has seemed to be amazing. I will probably try to remember to ask my neuro about that next time I go (unless I have decided to go inpatient first). I don't see him again for almost four months and my memory is not good (Thanks to my meds).

I have not heard of anyone being completely cured, except in articles, but there have been a couple people on here (or with a parent on here) who have gotten pain free for significant periods of time as long as they keep taking their meds. Susangf is the most active of them. But I don't know anybody with a complete cure. I hope they are out there somewhere.

You are very fortunate that amitriptylene has worked for you. I'm a 28 y/o male and got slapped with NDPHA on July 20, 2004 and have been with it since. I have been using amitriptylene for years with little or no success. I take it because there isn't a better alternative as of yet. Currently I also take Topomax and Baclofen with little or no success. I have a wonderful doc who has suffered headaches so he knows...but lately I've just about had enough.

I've started a new diet of fruits, veggies, white meats, beans and rice. That's it. I exercise regularly and was 100% healthy prior to this. I know there's an answer here but have not found it.

Consider yourself very fortunate and congrats. I am curious, have others found success with other meds????

Post edited by: uddbrannon, at: 05/15/2008 10:36

I do have some significant side effects from taking all these. If you are still able to work as a lawyer I would not recommend getting on all of them at once like I am unless you do better with the side effects than I have. I have a bad memory now that I think would make it really hard to keep a job like that. For me in my current state the pain reduction is worth it, but if I were still able to hold a job I might not think so.

Hello and welcome. You've been living with this a year longer than I so congrats. I have an internet friend who's lived with it for 23 years. If she can do it i can do it! My question to you is how do stay awake taking 60 mg of amitriptyline? I only take 25 mg at night for sleep (doesn't seem to help my headaches). Do you take yours at night? I can take 50 but I find that I have troubles waking up in the morning so i never do. I've been taking Gabapentin/Neurontin. It seems to be taking the edge off. So my Dr.is going to slowly up it to see if it will help me even more. This is the only medication that has ever had an effect on my headaches. If you haven't tried this you might give it a try.

Ha, I've never had a problem falling asleep. I remember popping 100 mg amitriptyline tablets before taking the bar exam (fun)... Everyone's bodies react different to medicine. I have not given Neurontin a fair shake, so I think that may happen. Back to the amitriptyline, I take the 125 mg now at night, but I've spaced them throughout the day thinking it would help and multiple doctors have actually encouraged that.

good luck with it.

I am on 1200mg of Gabapentin/Neurontin. it foews help alittle. every time we up it I go through a rough spot. so when he does up yours if you seem to have a hard time, give it a week-ish.. it does calm down.

good luck with it.

Jacee

Thank you for the advice! I was really hoping someone was on it to give me an idea.