I still don’t know if and/or when I will be going into the inpatient program. They are still trying to make sure my case fits all the criteria for my insurance to cover the stay. So 8 calls later I still know nothing. The stress of not knowing has not helped on the headache front. It has been horrible yesterday and today. I am having a difficult time Letting Go and Letting God. I know God’s in control but the whole relax thing is not going so well. Nine weeks straight of head pain really starts to wear a person down.
I finally got the call and we head to Chelsea Hospital in Chelsea MI for the inpatient program through MHNI. I really hope they can figure something out with these headaches and migraines.
Just waiting for the doors to open at the Michigan Head-Pain Neurological Institute. The drive went well…now to go through hours and hours of Dr. apts.
Oh and I got to get a fun EEG/EKG and blood work.
Apparently laying in bed for 6 weeks or laying in a recliner means that muscles required for sitting for hours in a chair are gone (deconditioning is hard to recover from). I hadn’t realized that I would be so sore from sitting in a chair.
On a more positive note MHNI is planning on admitting me into their intensive inpatient program for head/pain management. I should know tomorrow if my insurance will approve it and when I will be admitted. I am to expect a stay of 5-10 days if all goes according to plan.
Update: I have an apt with Michigan head/pain neurological institute (MHNI) tomorrow. They will run a variety of tests and meetings with several drs. By the end of the day they are supposed to come up with a
plan to be seen on an outpatient basis or if they will admit me to the inpatient program. So prayers for God’s guidance and wisdom. Also prayers because it is going to be a long day.
I had a couple of days where I had some relief and while it was wonderful to have the break from the constant awful pain, I had to be in a quiet, dark with minimal stimulation. Last night and today I came out of the dark and started talking more and watching some TV and the full blown headache is back. TV and conversation are big migraine triggers, also light, noise and over stimulation. So prayers that I get some sleep tonight as well. We have to leave at 5am.
They are hoping and planning on admitting me to the inpatient program as long as insurance approves the stay. If they do they are hoping to get me in early next week and plan on a 5-10 day stay. I should know tomorrow afternoon.
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.
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
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.