Migraine

I was wondering if anyone else has been diagnosed with New Daily Persistant Headaches in addition to their migraines? I'd love to talk about it and see what you've tried and what your experince is and what you've gone through ect.

I was diagnosed with NDPH and migraines two years ago. It has been an interesting and difficult road. Just recently I started Verapamil (in addition to my Topamax) and that seemed to have really helped the NDPH. I actually had a few weeks were my level of pain decreased somewhat after 2 straight years of pain 24/7. I still have pain 24/7, but the intensity became milder and let me do more. I actually drove on the highway for the first time! So huge, progress. Hallelujah!

With my NDPH, I found that if I push too hard, the pain bites back. So, I can do some activity, then I have to rest. Activity, then rest. Ahhh! And,even in the activity, I have pain. Grin and bear it, you know. It feels like a prison sometimes cause I'm always wanting to do more, but I physically can't. My body just does not let me. Does that ring a bell with anyone? If I would overdo it, then I would be unable to function the next day with a really increased headache (sometimes a migraine). I have to pick and choose what activities I want/can to do around the house. Exercising regularly seemed to decrease the intensity and amount of the pain, which has been great.

Currently, I'm not working, but getting back to at least volunteering in some capacity is a goal. Add the migraines on top of the NDPH is a whole other story which seems to make everything more complex. Yikes. There is so much I wish I understood about my brain! But, for starters, I am really curious to hear from anyone who also has been diagnosed with New Daily Persistant Headache. Anyone?

Hi Kelly

My 14 year old son was diagnosed with New Daily Persistent Headache. Intially, we saw Dr. Nissan in Chicago. He thought it was chronic daily headache. But we saw him about a month and a half after it started. I think that was too early to diagnose NDPH.

We started going to a different location after my son had been hospitalized by Dr. Nissan. We switched because we live VERY far from Chicago. I read about your good experience there. I was impressed with all the information and teaching they provide.

One of the doctors gave my son Petadolex which is an herbal supplement. Have you ever tried it? There were no side effects at all. The doctor said it may cause burping, but it didn't. I'm not sure if it helped, but at some point the NDPH disappeared.

I can't pinpoint when it left. I do know it started Nov 5, 2006. It went on for too many months. We are still dealing with migraine issues but the daily stuff is over.

I read that those type of headaches can disappear just as quickly as they started. I hope that happens for you.

My son is currently on elavil and neurontin as preventatives.

Jean Ann

quote:

One of the doctors gave my son Petadolex which is an herbal supplement. Have you ever tried it? There were no side effects at all. The doctor said it may cause burping, but it didn't. I'm not sure if it helped, but at some point the NDPH disappeared.

I can't pinpoint when it left. I do know it started Nov 5, 2006. It went on for too many months. We are still dealing with migraine issues but the daily stuff is over.

I read that those type of headaches can disappear just as quickly as they started. I hope that happens for you.

Jean Ann,
No, I haven't tried Petadolex, or even heard of it. Thanks for mentioning it. I am so glad to hear that the NDPH disappeared for your son. That would be lovely if mine did the same!
Kelly

I don't have NDPH, but I do have chronic daily headache. I have the same problems if I push myself too hard - I always pay for it later. Your description of picking and choosing activities reminded me of a great analogy (the spoon analogy) I read a few months ago.

http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php

quote:

I don't have NDPH, but I do have chronic daily headache. I have the same problems if I push myself too hard - I always pay for it later. Your description of picking and choosing activities reminded me of a great analogy (the spoon analogy) I read a few months ago.

http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php

MJ,
Thanks for this. I actually have read this analogy before. I really liked it. I had my husband read and told my friend about it. I really like it.
Kelly

Hi, Kelly,

I don't have NDPH, but thought maybe you'd like an article about it, in case this article has some info you haven't read before -- • New Daily Persistent Headache – The Basics.

Thank you so much, Teri! I have read it! It gave me so much information that I did not know about NDPH! I learned so much about myself! Like most of what I read on here, I re-read it to my husband, and it was also eye-opening for him. It is SO good to know that I am NOT crazy! Because most people just don't understand that I have a headache all the time..or that his wife has a headache all the time. I really do understand that is difficult to get one's brain around.

I am...We are so thankful for this site. I am learning so much that has helped me so much in the couple weeks I have been here. It encouraged me to go to the ER when I was status migraine probably wouldn't have before...just would've tried to push through the pain. And when I went, I was calm and collected because I knew I was doing the right thing because I had all of my forum family behind me. Of course then, I had the meds make me feel icky, but that is when I can come back here and get hugs.
Kelly

You're very welcome, Kelly. I'm so glad you're finding info and support here and that it's helping; you. I go to conferences and am constantly reading to try to keep up and be able to share info with y'all. It's always nice to know that it's working!

Awwwwwwwww. You can always come here and get hugs!

quote:

Originally posted by Kelly, FlywithHope:
Thank you so much, Teri! I have read it! It gave me so much information that I did not know about NDPH! I learned so much about myself! Like most of what I read on here, I re-read it to my husband, and it was also eye-opening for him. It is SO good to know that I am NOT crazy! Because most people just don't understand that I have a headache all the time..or that his wife has a headache all the time. I really do understand that is difficult to get one's brain around.

I am...We are so thankful for this site. I am learning so much that has helped me so much in the couple weeks I have been here. It encouraged me to go to the ER when I was status migraine probably wouldn't have before...just would've tried to push through the pain. And when I went, I was calm and collected because I knew I was doing the right thing because I had all of my forum family behind me. Of course then, I had the meds make me feel icky, but that is when I can come back here and get hugs.
Kelly

I don't have NDPH, but I do have chronic migraine and occasional bouts of tension type headaches. The harder I push myself, the worse it seems to be. I've tried to cut back on my workload some, but it's hard because I carry the health insurance so I have to work a certain amount or lose my benefits. I'm caught by a double-edged sword.

I do get that feeling like my body is a prison sometimes. It's becoming harder and harder to do things, and my world sometimes seems like it's closing in. I can't drive much anymore, I rarely go shopping because of all the triggers, I have to work signficantly less than I used to, I may have to give up school altogether, I had to completely change my diet, I can only use certain beauty products with no fragrance, I can't clean my own bathroom, I'm ruled by strict routines of when to eat, when to sleep, when to exercise, when to take pills (upon more pills). Sometimes it feels like headache and migraine have taken over my life.

Migraneur, I get that feeling a lot too. It seems these days that my life is ruled by migraine/chronic daily headache and trying to manage it all.

Migraineur,

I know what you mean when you say

quote:

my world sometimes seems like it's closing in.

It seems like I can or cannot do is determined by my pain sometimes...most all the time actually!

Kelly