Update: I will be heading to Chelsea for the MHNI inpatient program on Monday or Tuesday. Insurance will approve as long as it is 15 days between hospitalizations. So I get to see Dan and Josiah for the weekend and go in on Mon/Tues.
Today I was extremely fatigued. Blood pressure was low again midday and I woke with my head hurting bad today which usually doesn’t come on strong until midday. So today I spent mostly in bed. I had been getting to the point where I was up and about (not really doing much but at least awake) more than I was in bed but not today. Today I was simply fatigued with the same bad headache that is my constant companion. Hopefully I can rally for a bit because Dan and Josiah are on their way.
Merry Dunne Blades Oh Heather, it doesn’t seem fair that such a sweet person as you has to suffer so.
Heather Loose Johnson Someday hopefully my experience will help someone in return
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.
All settled in at my mom and Bobs for the week. Headache is manageable most of the time and for that I am so very thankful. I am extremely fatigued so the combination of the headache that makes me want to rest and the utter fatigue walking from one room to another are going to prove a long road to recovery. It sounds like I should team up with Melinda Richmond to beat the fatigue, get enough rest and drink enough water so my blood pressure will stop plummeting. I continue to hover around 90/55 or so. Gotta keep drinking water, getting rest and somehow start to get some exercise (in time). But for now I continue to rest.
Slept all night in my own bed and it was wonderful…no beeping, no needle pokes in the middle of the night, no one waking me at 5:30 to take prilosec. But I did have a rough patch in the early morning. Thankfully I was able to fall back asleep and slept until noon. Luckily Dan and I came up with a plan to dispense my medicines for morning last night so I just had to take them around the right time. It worked great. My head is still quite numb from the injections and the injection sites are starting to hurt a bit but overall I am doing ok!!
Has anyone ever had TMJ? I woke up yesterday in the hospital feeling like someone punched me in the jaw and I had a hard time opening my mouth. The nurse said it was probably TMJ due to the constant headache and I was probably clenching in my sleep. So now my rice bag has so many purposes. The newest being the injection sites and the jaw. At least I have a brief relief from the mind exploding headache. I will take it.
I’m looking for a blood pressure cuff to borrow or know where we could rent one or buy one. After being awake for an hour and a half and just sitting in the chair I tried to get up and almost passed out so we were thinking we might want to start monitoring my blood pressure at home…with the advice of friends, Dan went to CVS and bought one. Just took my blood pressure is 97/58. Going to monitor it and keep drinking fluids to get it back up above 100/60.
It just sucks that TMJ is one more thing that just started and causes additional pain. Plus the low blood pressure that is making it difficult to be up and around. Ugh. I’m not at the end of my rope but there isn’t much left.
And now the microwave died. Ugh! My main source of relief from pain is a heated rice bag. Going to try heating in the oven. Update: Dan looked up on eHow how to reset the microwave and it worked. Phew. That was a close call!! But the best FB response was from Emily:
Emily Feldpausch: Use the crock pot! (I continued to use the crock pot everywhere I went, including my bedroom, the hospital and at my moms. Now I have a microwave in my bedroom, but the crock pot was genius!)