Week 1 - Now Featuring an Update

Week 1 - Post Lemtrada 

October 27, 2019

You might have noticed I am messing around with the Blog format; I am trying to find a 'theme' I like.  This is going to be super quick because it's already 10 and I am beat but I said I would post once a week on Sunday.  It's been suggested that I make that twice a week.

This week the worst symptoms have been related to the steroids.  The steroids have really taken me for a roller coaster ride of hot flashes, bursts of energy, trouble sleeping and short tempers.  I could tell by Thursday that they were starting to wear off because the sweating was subsiding.  I have been feeling good other than that.  The flu like symptoms I was expecting did show up twice this week.  I felt feverish (but my temperature was normal); my face felt flush, lips dry, slight headache and my neck felt achy.  I took one Advil and it went away.  So pretty lucky so far *knock on wood*.  If I could just get some consistent sleep, I would be golden.  Oh and by the way, I found out this week that Melatonin is also involved in ovulation, menstrual cycle and menopause (google: period and melatonin).  I took it for a week and surprise! my monthly friend arrived a week early.  FYI - ladies!😳
The irritation on my scalp went away. 🤷
This post...to be continued.

-UPDATE -

Last week was mundane and went by so slowly; this week was busy and that's why I am updating this four days later.  The good thing about last week, though was by Tuesday, we realized my daughter and husband had allergies not a cold.  Their symptoms were either gone or going away and they never got congested.  It was a huge relief for all of us.  I had been keeping my interactions with my family to a minimum which is hard anyway but I had also just finished doing my infusions which was huge. I wanted to celebrate making it through and I couldn't. 😞 It's also hard to ride that fine line between cautious and obsessive when you walk into the kitchen and think "Everything in here might be contaminated". There were lots of Seventh Generation Disinfecting Wipes used last week. 😊 My husband slept in the guest room another couple of nights because I was so uncomfortable at night and still waking up so often.

This is me on the other side of the fine line. 😉

As I mentioned in my quick post, steroid side effects have been my worst symptom.  The week of my infusion I was already having trouble sleeping and as I also mentioned before my neurologist's office recommended Melatonin. It helped me fall asleep but it didn't help me stay asleep and then when it affected my menstrual cycle, I stopped taking it.  I spoke to the PA in their office and she recommended two other supplements L-tryptophan and GABA (Gamma-aminobutyric acid) but also prescribed me two weeks of Ambien.  I started taking 1/2 on Thursday night; that first night I slept 8 hours, straight; no bathroom trips!  On Friday night, it was the same as with the Melatonin; I fell asleep quickly but I woke up once around 2 or 3am to  use the bathroom then at 5:30 I was wide awake.  Five Thirty seems to be my witching hour; I am just awake and can't fall back asleep almost every morning.  On Saturday night, I tried a whole pill to see if it would help me sleep through the night.  It did, kind of, I was awake again at 5:30 but I drifted in and out of sleep for another two hours then after I ate breakfast, I went back to bed and slept another two hours!  I felt "zoned out" until about 3pm.  Clearly, a whole pill is too much for me.

Even though my sleep isn't consistent and I am not sleeping enough, my energy has been pretty high especially in comparison to what I should be in my sleep deprived state.  Some days I was sleepier then others but overall my energy has been higher than my "normal".  On Tuesday specifically, I felt like I was on speed.  It was crazy!  This was Tuesday of last week so that was 3 days after my last steroid infusion.  I was talking fast and couldn't sit still.  I did a Zoom session with my therapist that day.  I am usually a pretty reserved person and sometimes I don't know what to say during these sessions. I talked the whole 50 minutes and I talked so fast that I am not even sure she caught everything I said! I woke up at my typical 5:30 that morning and I was still wired at midnight.  I did make myself sit down and watch some TV because I was afraid I was going to crash or wear myself out. That was also my worst day for sweating.  Over Monday night, I kept waking up in a cold sweat and I said multiple times that day, I was a walking hot flash.  It was horrible, really. By Thursday, the hot flashes and the night sweats were gone but I could tell I was still running hotter then normal because I am usually cold.

The other thing affected by the steroids has been my mood.  Overall, I am in a good mood more consistently then my typical.  I've noticed that I can get a little snippy but I am also a lot more talkative in general and I am not holding back like I normally do.  I am joking more and smiling more.  I talked to one of the neurologists in the office this week.  He told me that the steroids could take 7-15 days depending on the person to wear off.  I never would have guessed it could take up to two weeks for them to wear off.  I am ready to sleep better but I really hope that my better mood stays.  Fatigue and depression are very common symptoms of MS.  In my therapy sessions, we've often talked about how much of my fatigue and depression (I don't call it depression because I usually don't feel sad; most of the time I just feel blah) is related to my MS and how much is related to just life circumstances or things in the past.  With my mood elevated by the steroids, we talked this week about how this seems to be a sign that the majority of this may be related to my MS.  Whatever is the cause, I've gotten a taste of what it feels like to be in a consistent good mood and I don't want that to change.

And with that thought, I really need to get to bed.