I’m going to be doing (finally) the neuropsycological testing on January 8 and after that I will see neurology at the VA here in Colorado Springs on January 23. I’m glad it’s finally time to get this done.
I see my oncologist on January 13 to go over bloodwork that I’ll be getting drawn on January 2.
On February 19 I’ll be having some follow-up work done with the plastic surgeon. Nothing real major, just a short procedure with a very minimal recovery time.
Thanks for all your support!!
I heard back from neurology about driving. It was strongly suggested that I not drive until I see a neurologist, due to my intermittent confusion. My appointment with the neurologist isn’t until August 4. I had thought I could ease back into driving by having Kenn in the passenger seat but a friend pointed out that neither of us would have a quick enough response if something did happen. So, no driving until at least August 4. We’ve made it through 3 months of not driving, we can surely get through 6 more weeks.
In other news, my speech therapy is going well. I like the new approach we’re trying out (my speech therapist moved across the country, so I have a new one).
My fast from social media is in its 4th week and I am noticing how often I reach for my phone to check Facebook. I’m having difficulty replacing that time with something else, mostly because the replacement reading seems like it’s too long for the short amount of time I have available. With Facebook I can scroll for as long as I have time, even just a few minutes here and there. I hope that by the end of this fast (July 10), I will have some new, more desirable things to do with my time.
Good news!!!!
I spoke to the neurologist and the RN at the VA this morning and the doctor said that Depakote (the new med) can cause stumbling and falling. Over the last week I have been stumbling and falling much more than before they started the new meds. The doctor said that’s not unusual and he recognized the fact that I had missed those 5 doses right before the seizures. So, when I get home I can take the Depakote out of my pill case!! Yay!!!
Well, my total number of seizures was 2; one in the ER waiting room and another on the gourney in an ER room. I stayed for 2 days and had a bunch of tests run to try and figure out why, after 14 years of being seizure free, I would suddenly have 2 seizures in less than an hours time span.
Well, a little extra context helped. Apparently I had not put my seizure med in my pill holder for an entire week. I had missed a total of 5 doses before I had the seizures.
So now I’m on a higher dose of my main anti-seizure med, and they’ve added a new one. No driving until I’ve been seizure free for 3 months. I haven’t been able to see a neurologist because they are so backed up. I was able, however, to get my meds transferred to the VA, so I won’t run out. I also bought a pill organizer for 4 times a day. I use the extra compartments for my seizure meds only. Hopefully we will catch it sooner if I mess my meds up again.
Like I said, can’t see a neurologist until August 4. So now I just try to adjust to the loss of driving and the increased meds. Interesting thing, I have been falling and stumbling a lot over the past few weeks. I’ll have to research it. As always, thanks for all the support!!
Regarding my speech difficulties, I saw neurology today and there were no real answers from the neurologist as far as why this is happening, although she did give me some things to try. She wants me to use the Cephaly device (that I got from the VA many years ago) as a migraine prevention rather than an abortive measure, and start magnesium, riboflavin, and melatonin (not all together).
She thinks I have been under a lot of stress on top of my insomnia and is trying to treat the insomnia and the migraines in order to decrease my stress levels. We’re still waiting for the results of the Keppra level, as well as some lab tests she’s ordering today. She is also putting in a consult for speech therapy in the Springs. I will see neurology next in January. It was the first appointment they could get me.
I admit to feeling a bit defeated and overwhelmed right now.
I’ve got good news and bad-ish news. First the good news: I was mistaken when I said the authorization for the plastic surgeon was approved – but now I know it has been because his office called me to let me know it was approved. Yay!
Not so great news: Neurology at the VA in Denver called to set me up with a over-booked appointment. The doctor I spoke to said she still doesn’t think it’s a stroke or even my epilepsy but she said I need to be evaluated sooner rather than later. I’m still having difficulty speaking at times. Originally it occurred when I was tired or stressed. Now it happens most every day and at varying times. So, we will drive to Denver next Thursday morning for a 10:30 am appointment. I will keep you updated. Thanks for all your support!!
I started a new medication on the 9th and by the 16th the speech difficulties came back. So, the oncologist told me to stop the new medication and see her next week. My appointment is on Wednesday.
I spoke with neurology today and the neurologist said if I get any new symptoms to head straight to the ER. She’s confident it’s medication related, not anything more. While talking with her, I had the same speech difficulties that I had on the video visit on Tuesday that prompted the call to the oncologist and neurology. The neurologist also said to have a low threshold for heading to the ER if I get any new symptoms.
I’ve noticed that the speech difficulties come back if I’m at all anxious about the conversation I’m having.
It’s all very weird but just another part of this cancer journey.
