March 31st, 2016: I remained at baseline NDPH all day which was a great relief compared to the days leading up to this visit. I took an Amerge just to make sure that a migraine didn’t decide to join or that the NDPH didn’t increase.
I had such a great day. My friend Dawn rode down with me and we talked all the way. I drove and I talked and my head pain did not increase…it was wonderful. I even drove home and talked on the phone for a good majority of the trip home since Dawn had food coma and I was trying to prevent going into food coma 😉
I was really worried about my appointments today because I had to tell them about Mayo Clinic, but it turns out they already knew because they all had to sign off on the records to go to Mayo. They were very supportive and were anxious to hear any findings from Mayo. What a relief! And anxiety for no reason. Oh well, I just didn’t want them to think I was going behind their back…I really just wanted to have someone look further into what might be causing the constant head pain. Almost 15 months now! Never how I imagined it would be, but have done my best to take it in stride. So glad that my Dr’s at MHNI had my back about going to Mayo Clinic. I leave in 5 days.
In between Dr. apts Dawn and I went shopping to 5 Below….great store, but you really have to limit yourself or you could spend way to much money without even knowing it. And then we were going to meet up with my high school friends Kristen and Steve and their son Eli. Unfortunately they were delayed and we only got to give hugs, say Hi and good-bye. But the food at Olive Garden was awesome. I hadn’t been there in so long.
Oh and I stayed awake all day!!! Big deal for me really! Thanks for making the trip with me Dawn…it was much needed girl time!
4 thoughts on “MHNI #14”
Hi there. Please let me know if Mayo can help with the NDPH. I’m desperately looking for answers, but nobody seems to know where to start. I’ve had NDPH for more than 18 years. Thank you, and GOOD LUCK!!
There are no answers for NDPH except that for 75% of the people with them have the head pain resolve after 3 years. I have yet to find anything to help mine really. Mayo put me on a really high dose of Neurontin but I am not sure it is really doing anything. The high dose of prednisone is great, but it makes me go go go which triggers migraines…so I have had to make myself slow down on a regular basis…and it is so hard to do! I will likely have to go back to Mayo in August for a follow up and a change in meds again.
I’m so sorry there’s no magic solution for you either. It is so frustrating, I know. Hang in there, and keep us posted please.
If only there were more funding going into research. Check out the most recent blog post. I am sure it sums up your life too
LikeLiked by 1 person