Really bad night last night. Though the meds I am on provide brief periods of relief they still do not allow me to visit with many people (even 2 sometimes) without having a full blown, pain level 9+, headache. That is what happened last night. After company had left, I was left with a headache, pain level 9+ That lasted from about 5:30 until I was finally able to fall asleep. And then I was awake on and off all night with headache pain. I took a shower this morning and that seemed to help a bit. In addition to the headache yesterday I also made the mistake of not checking the ingredient list of Jelly Belly jellybeans. They are one of the few jellybean makers that do not use artificial flavoring. I tasted the
coconut and thought it’s just a tiny jellybean. Well it got me and for some reason it took awhile to figure it out, oh yah my head felt like it was splitting open. Once I figured it out I took my antihistamine and within
about 25 minutes the stomach cramping had resolved and I only had the head to deal with. Better one problem at a time than two.

I have been feeling like I am going to pass out every time I stand and walk and then I get extremely weak feeling from head to toe. Like I am having to lift a bar bell. I wonder why they never said anything in the hospital before I left. They just said drink lots of water. When my blood pressure plummeted to 83/43 they put me back on IV fluids but didn’t really instruct me how to manage when I left. So all of this advice has been ever so helpful.

So my doctor apt today couldn’t have been timed better. God is in Control …relax. I have to keep reminding myself of this.

Safe trip down. Praying for good direction from Dr Masih

Update from Dr: He agrees with the resident dr who had been treating me in the hospital that this is “just” a migraine. But he also agrees that I am an extreme case. So he adjusted the meds I am on (Increased Keppra, increased Elavil, and stop neurontin). I am to call him back in a week but in the meantime he wants me to look into 2 in patient headache clinics in case the increase in meds does not work. One of the clinics is in Chelsea, MI (Michigan Head-Pain Neurological Institute: MHNI) and the other is in Chicago (Diamond Headache Clinic).

It doesn’t seem like much of a game plan but at least it is something. In the meantime I need to keep overstimulation to a minimum and try to start getting some exercise as I can handle it.

Nathan Gillikin:  Heather, have they diagnosed your headache as hemipalegic migraine? Do some research on that. Hemi headaches are as debilitating as what yours sound like. My wife had a few of those. She had slowed speech and partial paralysis as well. One hospital tried to push meds for stroke one time. I had to step in and tell them about hemi-headaches. Not much is known about them and they are hard to diagnose.