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.
Finally a piece of good news: the headache neurologist specialist with the MSU neurology team who treated me in the hospital, specifically Dr. Masih, a head pain neurologist, had a cancellation and therefore an opening tomorrow. Answer to prayers! Yesterday their cancellation list was really long but today I was called PTL. Your prayers are being answered!
I went to my family Dr today. It was supposed to be the apt that would clear me to go back to work and I would be all better. No such luck.
The new game plan is two fold. Part 1 is if I experience anymore of the unbearable pain I go straight to the Sparrow ER. The other part of the new plan is that he is referring me back to the neurology team that treated me in the hospital. My leave from work is extended for 6 weeks as far as my dr is concerned. It still has to be approved but hopefully it will be.
My current medication, Topomax (Topiramate), has so many side effects it’s crazy, so my family dr said I could start stepping it down if I wanted too. On the flip side I finally got a couple of days of minimal relief. So it is a toss up!! so I pray specifically about this. The meds are only just helping and only a little, but the relief is welcomed. I did figure out that when I got my first dose of 25mg Topomax at the hospital (Wednesday), I woke up the next day and the photo sensitivity was a bit better and the headache wasn’t so severe. Thursday the doctor upped the Topomax to 50mg and I felt a little bit better. Friday they added Elavil because my anxiety was really bad and sent me home on 50mg Topomax. By Saturday the tension part of the headache was gone but the pain over my right eye was still there, just a little bit better. This continued for Monday/Tuesday. But by Wednesday the headache returned in full force and continued to increase in intensity through Thursday and Friday (when the cognitive disabilities began). The intense pain continued through the weekend into Monday. On Monday March 2nd I increased Topomax to 75mg and during the next 3 days the headache pain level had decreased to manageable. I believe there is a trend with the Topomax but with every increase in dose, the side effects begin to increase as well.
Side Effects of Topomax: At times I don’t remember where I am or how to turn something off I have turned off 50 times (all brief but scary). My mind gets so jumbled I can’t answer simple questions. I have great difficulty starting a conversation. I switch words around. I can’t do simple math problems. In other words cognitively, Topomax isn’t so good for me. So weird that medication can do such strange things to the brain.
How could an allergic reaction to an allergy shot have landed me here? That’s all we want to know!! And when is someone going to help stop this damn headache.
I kept waiting to do an update because things were plugging along with little to no change with a headache that was always there but I was learning ways to cope with it by taking showers and lots of naps. The medicine was making me extremely tired and I was napping a lot. I am also adjusting to being home; the sounds, the lights, the smells even. I am still preferring a dark quiet room though which is to be expected with a headache of any kind. I am starting to gain back some energy as well. The Dr told me that it would take 3 days for every day I was bed ridden to recover. Ugh! 3 weeks to regain the strength I lost during my hospital stay.
Yesterday I went for a follow up apt with my family dr and we have a game plan. I am so grateful that my dr understands Topomax both on a personal and professional level. I feel so much better knowing that I am in good care. So that is good. However, after every Dr visit over the past 6 weeks something always and I mean always got worse. And this visit was no exception, nothing major. But my headache got worse within hours of going to the Dr, nothing drastic but the headache kicked it up a few notches which is a big bummer but not entirely unexpected really. It could also be the weather adding to things. The Drs said the worst of this rebound headache would be for the first couple of weeks and then only time will tell. But it sure is making me start to wonder whether or not I should just stop going to the Dr altogether:).
At any rate dark, quiet places are my friend and are truly lovely.
On a positive note: Gideon got excepted into the Great Start Readiness Program for next year. How exciting!!! My little boy is
going to preschool!!!