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Snuggles with my Buddy!

Snuggles with my buddy today are helping a ton. He also gives me hugs whenever he sees me to help make my headache go away. Let’s just say I needed lots of hugs and snuggles today. A headache that took hold last night still remains very intense.

March 20th
Good news: I got an apt with MHNI next Wednesday to determine if in patient care is a next step for me.  The apt takes all day in addition to 4 hours round trip of driving. So prayers will be much appreciated next
Wed.

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Debilitating headaches

The headache continues at a level that is not quite debilitating and yet I still don’t find myself able to function very well. The light sensitivity/photophobia seems to be quite extreme lately so it makes it hard to be up and about. And the overstimulation/phonophobia (often brought about by to much noise or movement aka Gideon jumping about). So in order to avoid the headache becoming debilitating I hunker down in the basement or I sleep. None of this is the description of someone with a manageable headache.

I will give the meds some more time but I have begun looking into the two in patient headache clinics and both are in network for my insurance. My next call will be to find out if they have availability of rooms and what it might entail. I just want to get back to my family and to my work. Shoot I would even love to be able to go to the store or out to eat but the thought is terrifying to me. So prayers for guidance on the next step that is right for me and my family.

 

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The Plan: v 8.0 – Dr. Masih

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.