Monthly Archives: September 2013

Time Travel – Without The Doctor.

Posted in Just Life., Multiple Sclerosis, Seizure Disorder by

Prior to last night, it had been a long time since the last time I had time travel seizures. Yesterday, however was full up on wonkiness.

On the one hand, I’m very lucky that since I quit taking Cymbalta and Abilify in December of 2012, I’ve had several good weeks without any seizures at all, and that on the other weeks, the few seizures I did have were primarily simple partial seizures that made muscles in my face and neck behave incorrectly, as opposed to complex seizures that leave me feeling like I’ve been picked up and transported to another location while drugged.

On the other hand, there are some really good things about experiencing “time travel.” It gives me perspective on my life that I wouldn’t otherwise have.

For example: Yesterday, I remember the post-ictal confusion from one of the seizures fairly clearly… I thought I was 9 years old, that I had both Wordly Wise and long division homework to do (which was important!), and I had a very hard time accepting that my body was this big, that I was married (and my parents knew about it!), and that technology had come as far as it has. I was sure that Adam was super-rich because he had the biggest computer screen I’d ever seen. This was, of course, our television set which is hooked up to a desktop computer.

I actually asked Adam if his computer had Alf’s Geography Jam, because that and Carmen Sandiego were the best games we had on our computer at “my house” (otherwise known as my parents house, circa 1989), and I was pretty good at them. Needless to say, he laughed pretty hard at that one.

Anyway, getting back to that whole “perspective” thing: there were important lessons contained in last night’s episode for me.

1.) I was sure we were very wealthy, just based on looking around the living room.  Do you know what that means?  It means we are rich. We may be saving for a house, constantly checking and working on our budget, and living in an apartment in an area of town that is not the best… but my 9-year-old self’s idea of what it was to be rich has been achieved. I mean, we have more than 1 computer, a TV that fills most of a wall and also plays computer games, comfortable couches, and a dog who actually comes to me to snuggle when I call him. 9-year-old me thinks she hit the jackpot of possible futures…and that makes me happy.

2.) My husband is just unbelievably amazing and handsome and loving and perfect. During the whole situation, he didn’t once treat me like I was losing my mind. He spoke with me respectfully and patiently. He gave me hugs when I couldn’t stop crying because I was scared. (I didn’t know where I was or how to get home! Or why my back was tingling and burning. Or why my head and stomach hurt so much.) and apparently, I went through time travel multiple times yesterday.  (I only remember the last one.) I can’t begin to understand where his patience and compassion come from, but I am immensely grateful for both.

3.) “Little me” was very disappointed in the distinct lack of chocolate chip cookies in my home. I remember saying, “But I promised myself that when I was old enough and had my own place, I’d bake chocolate chip cookies all the time so I could have them whenever I wanted them.”  This morning, even though I know that it’s not good for my diet, I still feel compelled to bake them. (Don’t worry, I’m not going to walk to the grocery store today.)

4.) Seeing myself in the mirror, even after I’d been brought back to present time, felt like looking at a stranger. Inside I was like, “OH NO! I got old!” but I also thought that I had gotten a lot prettier. So, there’s a plus.  I didn’t judge myself negatively for my weight. It’s a practice that I’d like to continue.

5.) Cell phones are MAGIC. I think we’re all so used to them by now that they seem mundane, but from a 1989-1990 perspective, they are the coolest things ever. Adam tried to show me my phone when it was ringing, and I was like, “That’s not a phone.” Really, we have handheld computers that happen to be able to make phone calls from anywhere. (And of course, since I have my own and Adam has his own, we’re clearly bazillionaires.)

I titled today’s post “Time Travel – Without The Doctor” because yesterday, Adam didn’t use the Doctor Who theme song to help bring me back out of my confusion.  When I first began experiencing this kind of post-ictal confusion, it was the Doctor Who theme song that got me back to present-day Rae.  Instead, he used Spotify to play pop music that had just recently been released, to try to bring my memory back to present times.

I marveled at Spotify. I absolutely gawked. The ability to play whatever song you want, whenever you want to, on your TV? It blew my mind.

What really hit home for me from yesterday’s experience is that we are living in amazing times, where technology exceeds anything we could have imagined 25 years ago.  It makes me very hopeful for the future. It makes me very grateful for the present.

Surprisingly enough, this relapse isn’t being treated with solu-medrol… just a medrol dose pack. It’s been nearly 3 years since my last time with IV drips. I’m fairly certain that’s a good thing. I just am really hoping that the oral steroids kick this relapse’s ass.

This morning, my back is tingling/burning like crazy, thinking is like wading through a river of pudding, my left foot is numb in places, the top left part of my chest is so numb that when I touch there, I can only acknowledge pressure, and I’m still just happy that I’m living in today’s day and age and that I was able to get out of bed. (Even if I’m seriously considering a nap in a few minutes.)

For anyone that’s concerned, I’m still on Gilenya. I’ve almost finished my first month on it. I don’t know if it’s doing any good at all yet, but the few side effects that I’ve experienced are still better than the intense pain I experienced on Tecfidera. I’m also extremely grateful for the efficacy of a small amount of marijuana. It makes my back hurt a lot less and decreases my anxiety over numbness in other places in my body. I’m really looking forward to January, when it becomes legal for medicinal use here in Chicago and I can get a mini-vape like a Cannacig.

Hello, Gilenya…

Posted in Multiple Sclerosis by

Gilenya

Hello, Gilenya!

Thursday, August 29, 2013, I started a new MS medication – Gilenya.

So far, the most annoying part of being on the once-a-day drug is that it required an initial observation period.  During your first dose, for your safety, you must be monitored for 6 hours.  For me, that meant being at the University of Chicago Medical Center infusion suite at 8 a.m. By 8:30, I had taken my first dose, and was sitting around waiting for anything to happen… anything at all.  Every hour, the nurses ran my vitals to make sure that my pulse wasn’t dropping to a worrisome level. The whole time I was at the hospital, my pulse stayed between 90 and 99 and my blood pressure remained in that annoying place where it tends to stay — just high enough to be considered high, despite taking medication, but not high enough to cause any concerns. By 3 p.m., Adam and I were back on the road to get home.

A few hours after Adam and I left the hospital, we went to the gym to do our regular Thursday afternoon cardio session. We both figured that if nothing had changed at the hospital, there was no good reason to take the day off from our physical fitness routine. Despite that hope, I started feeling really awful about 5 minutes into my usually 20 minute long jog on the elliptical trainer.  When Adam saw how hard I was pushing just to stay on the machine, he called it a day.  We went home and checked my pulse with the blood pressure wrist cuff… 68.  Now, 68 is a totally healthy pulse to have. It just happened to be 30 beats per minute less than what my regular resting heart rate was, so it made sense that I was dizzy and very tired. The Gilenya literature had let us know that pulse slowing could occur up to 24 hours after taking the first dose, so we followed the procedure we’d been given.

Adam called the Gilenya Go! program help line for me, and the nurse said to call my doctor… so we called. We were connected with the neurology resident that was on-call and were told that if my pulse dropped to close to 50 to call them back.  Thankfully, the lowest that my heart rate got that evening was 59.

Since that first night, I haven’t had any problems to speak of. My “normal” resting heart rate is now in the low 70s, and I figure that’s probably better for my body overall.  I haven’t had any other side effects that I can think of, and I’ve been enjoying having a medication for my MS that doesn’t appear to be negatively affecting me at all.

Of course, nothing in life can be totally simple… the Universe had to spice it up.

FDA warns of PML case connected to Gilenya

It was literally the same day that I started this drug that a warning came out from the FDA that Gilenya may cause PML, a rare and often lethal brain infection caused by the John Cunningham (JC) virus that damages the fatty covering of the brain called myelin.

PML had previously only been associated with Tysabri, because developing PML is a known risk of taking the drug, and 2,582 Tysabri patients have been recorded as developing the infection.

Fortunately, Novartis, the maker of Gilenya, does not believe that the diagnosis of PML occurred because of the patient’s use of Gilenya. In a quote from MedPageToday.com, Novartis said “‘MRI reviewers’ had examined brain scans taken before the patient started on fingolimod and determined that the patient might already have had PML, [prior to starting Gilenya] because lesions seen in the scans were “atypical” in MS.”

So, I’m not worried about developing PML.

Side Effects?

Gilenya has some serious potential side effects: slowed heart rate, increased risk of serious infections, macular edema, breathing problems, liver problems, and increases in blood pressure. The most common side effects of Gilenya are headache, flu, diarrhea, back pain, abnormal liver tests, and cough.

So far, for me, I’ve only experienced a slowed heart rate. It makes working out a little more difficult, but overall, it seems benign.  The only thing I’m actually worried about is increased blood pressure, since I’m already hypertensive.

I’ll be sure to keep everyone in the loop and let you know if anything changes, but for right now, Gilenya seems great. 🙂