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!
When I woke I had very little head pain…but I decided to have some ice tea with Caffeine so I can stay awake and enjoy the head pain, which meant that I started doing things (I did get a lot accomplished) and talking on the phone for this and that which meant that my head pain increased. We had Gideon’s Parent/teacher conference tonight and I really wanted to go and enjoy it…he was so excited because it was lead by the students…way too cute and we got to see what he is learning. So I decided to take an Amerge for the migraine that was brewing. That in combination with the caffeine means that I am wide awake still at 2:45am.
I completed my entire timeline of Dr. apts and procedures done since Jan. of last year (I had already started, but I finished tonight). I also completed my medication timeline. A list of when the meds were prescribed, by whom, dosage and if they were effective and if I tolerated the med. And then because I was still going strong I made a spreadsheet of my migraine journals that show how many migraine days I have had each month since this started and how many days I have had to take medication to help with the pain.
So in a nutshell I am still wide awake, but I still have very little head pain. I wonder what other spreadsheets I could make, I do love spreadsheets and organizing 🙂 hehe! I believe that the first thing I begin to do when I start feeling better with or without the aid of medication is to organize…the kitchen, file folders, make spreadsheets, write my blog to get my thoughts in order, laundry, cleaning. Praying that this continues tomorrow because I still have not unpacked from our trip to Florida a month ago 😛 Don’t judge! Most of the clothes are summer clothes anyway!
Now I will probably sleep all day tomorrow. That’s the way it goes. Oh wait I need to start a list of things I need to take with me when I go to Mayo Clinic…and I will definitely need my HotHands Hand Warmers and gloves.
2/2/2016 Yesterday I had my follow up with my Dr’s at MHNI yesterday.
I woke with a full blown migraine. I took my morning meds and an IMITREX, put my IceKap on and slept for an hour. When I woke up I felt so much better, thank goodness, because I had no idea how I would make it through the day. Gideon took all of his meds like a champion this morning (thank goodness). He had to go with us to the Dr. appointments because he couldn’t go to school, I couldn’t drive and we didn’t want to expose anyone else to his multiple illnesses. So he got to hang out in the car with us for the day. He is all set with electronics, movies and his new little stuffed animal. Then as we went to all get in the car, we had locked our one and only set of keys in the car. Luckily Dan is a pretty handy guy and we still had a metal hanger. Car unlocked, and only 15 minutes late. Then I downed some ice tea (caffeine) to further help knock out the migraine.
My neurologist changed the triptan I was on (Imitrex) to a triptan called Amerge for an abortive med for the classic migraine, hoping it will have less side effects. We also discussed adding Flexeril to my preventative meds for NDPH. He had read an article that people with NDPH have had great success with Flexeril, so I will be starting that tomorrow. We will see how it goes. It is a low dose so hopefully I won’t have to many side effects. The last change to my meds is to increase my migraine preventative medication, Robaxon to its maximum dosage to see if I had any better luck at a higher dose. At my next office visit if my migraines haven’t gotten any better, we will try a new preventative med. I didn’t want to add a new medication before our vacation. If the increase in this med doesn’t work, we try another at another at my next appointment. The goal is to find a med that will break the cycle of the migraines and NDPH and prevent further head pain. I also now have the option to make an apt for nerve blocks in my temples as needed every 6 weeks which thus far has been a miracle block. I get an entire week of pain free.
2/3/2016 Today Gideon and I had a whirlwind day. Josiah had a delay in school, so we drove him to school, so Gideon and I went to CVS to return our late Red box movies..ugh, we have to stop doing that! And then I realized I forgot my prescriptions…ugh again! We did manage to get to the post office to resend for the 3rd time documents to SSDI…ugh why do they keep losing my paperwork. We drove back home to get the prescriptions…ugh. Went back to CVS and then headed to Eaton Rapids for lunch with Dawn at McDonalds…Gideon was so excited! Then a follow up with his Dr. He is still full of illness 😦 Double ear infection still, swollen glands, sinuses completely blocked up. So she prescribed prednisone to help all of the swelling (Is it bad that I want to keep the prednisone for myself 😛 and no I gave the steroid to Gideon. He is feeling better, but just the energy level! The rest of his little body still hurts.
Once we got home I passed out with a migraine on my left side (very unusual for me, most of my migraines are on the right side). Still have a mild migraine but a good day overall.