I fear that I freaked everyone out a little, when I ventured out to post pictures on Facebook of the mysterious manifestations of my episodes, which have thus gone undiagnosed.
The bottom line is that I am a-okay! I am working, and driving, and being a Mommy, and going about my day-to-day life, just as I was before. I had put my running on hiatus for awhile, for fear that I would totally freak in the middle of nowhere, but I've recently gotten back into that, and I have even survived an "episode" during a run! That's right, I was running the other day, and looked down to discover my left hand all drawn up the way it loves to do, and I just kept going, and it eventually relaxed. So, suffice it to say, YES it's mysterious, YES I want some answers, but NO it's not hurting me, and NO I truly don't believe it is anything too serious. I have had multiple episodes every single day since December 1, with the exception of December 22. At first, I was freaked out, because I've been through this very thing before, and I was completely blind-sided that it had come back, as I had truly counted it as a fluke period in my life that I was glad had passed. But, now, over a month later, I'm just like, "Eh, this is weird." And, I usually just make fun of myself, and don't think too much about it. I just deal with the little interruptions throughout my day, and move on.
I had similar episodes in 2006, and we never really found an answer as to the cause, because they eventually went away (after I went off of Adderall, and started taking Keppra - an anti-convulsant). Once the episodes subsided altogether, I took myself off of Keppra, and thought, "Wow, that was weird. Glad it's over." Since it has come back, presenting virtually identically to the way it did in 2006, we will definitely be more proactive about finding the cause and hopefully a diagnosis. My main concern is to know A) whether it is genetic, and something I may have passed on to my children, and B) whether it is progressive or benign.
Sometime in November, I started having some subtle manifestations of the episodes again, such as my head wanting to fall backward, and I remember distinctly thinking, "Hmmm. No way?" But, that was the gist of my thoughts about it. Until it reared its ugly head full force at the beginning of December.
In 2006, my episodes began with very pronounced involuntary movements in my left pinkie finger, which quickly evolved into my whole hand and arm being involved (curled up, with super tight muscles that created soreness, and even left creases in my skin from how tightly my muscles would tense up). A few days after the onset of the left hand symptoms, while driving in rush hour traffic in Austin, my right arm became involved suddenly, and without warning, so both of my arms were drawn up. These symptoms were followed by the neck involvement, an inability to walk with a normal gait, and the left side of face involvement. Eventually, I began having involuntary muscle jerks in my abdominals, mostly around bedtime, which continued for months and months, even after the other symptoms subsided. I went through all manner of testing, including blood work, MRI's, EEG's, nerve studies. Everything was fine.
This time, the episodes almost took a reversal of the onset of symptoms. In other words, the symptoms that reared their heads LAST last time, came about FIRST this time. And, now, I'm basically back to where I was in the very beginning of this in 2006. The most common manifestation, is that I can be doing just about anything, and suddenly my left hand will be completely drawn up into this position:
It doesn't disturb me, or even hurt. It's a little inconvenient, and embarrassing, at worst, but I can generally hide it. The other day, I sat in an ARD meeting, and had upwards of 3 or 4 episodes during the course of the meeting, and I'm pretty sure that nobody else even noticed it. I can "make it stop" by using my other hand to open my hand up, but the moment it is left alone, it casually draws back up into this position for a few minutes, and finally relaxes again.
A slightly more frustrating manifestation is the "1/2 grimace." Essentially, this comes hand-in-hand with the hand. LOL. Half of my face tenses into a frown, then sometimes twitches, alternating between a frown and a grimace, prior to its eventual relaxation (after several seconds to minutes). To the naked eye, one might think I have Bell's Palsy, upon looking at me during an episode, but the distinction between my goofiness (for lack of a better descriptor) and Bell's Palsy, is that Bell's Palsy involves paralysis of the face, whereas my muscles are actually involuntarily engaged (against my will!!) ha! Here's what it looks like:
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| Pretty, right??? |
On my "worst days," which happen maybe once a week (or more frequently some weeks, like this week, for some reason), I have a "foggy head" aura that accompanies the episodes, and they come every 45-mins to an hour throughout my morning, and continue throughout the rest of the day. It's difficult to describe, but I feel essentially disconnected from everything.
My most annoying "manifestation" of the episodes is when my head basically "forgets where it belongs on my shoulders." That's the best description I have for it. In essence, my head just wants to fall backwards, so that I look straight up at the sky. I can set my head back upright, easily, but as soon as I do, it just starts pulling backwards again, and it is beyond annoying, especially if I'm sitting in a business meeting. I mean, how disrespectful does that look -- for me to just start randomly staring at the ceiling during the middle of an important meeting. LOL. So, on the one hand, I feel like I need to warn everyone before a meeting, "Um, if I start staring at the sky, it's not on purpose, and I don't mean anything by it." But, on the other hand....well, who wants to open that whole can of worms??
"Uhhh, why would you start staring at the ceiling? That's weird."
"Oh, I'm just having these random episodes, where I can't control my body.... No, I don't have a brain tumor ... No, I'm not having seizures ... No, I'm not just stressed ... We just don't really know what it is!"
And, last but not least is the involuntary "stomach crunches." Basically, my entire core starts doing these involuntary, rhythmic contractions (sometimes 2 or 3 in a row, pause, 2 or 3 more, pause, etc.), which may go on off-and-on for a couple of minutes, and then return 10 minutes later. Of course, I joke that there's a positive in everything, and the silver lining here is that I should have a smokin' hot six-pack by the time we get to the bottom of all of this!
Jonah used to think my "stomach crunches" were funny, if he was on my lap, but I think he's gotten bored with that. 3-year-olds will be 3-year-olds. Whereas he used to giggle, and say, "Mommy, you're bein' FUNNY!" Now, he says, "Mommy, why you keep doing that??" I will admit, I was a little heartbroken the other night when I had an episode with him in my lap, while his Daddy was at work. It was the worst episode I've had while alone with the kids, but I still attest that I maintain full consciousness. However, my head was back, my eyes were closed, and I was having trouble speaking clearly. Jonah asked, "What's wrong with your chin, Mommy?" I tried my best to tell him, "Mommy's okay. My chin is okay." But, he then, in a very frightened little 3-yr-old whimper, whined, "I want my Daddy." I hated to know that he felt scared, not knowing what was wrong with his Mommy. That has reinvigorated my passion to find some answers.
So, where do we stand now? Well, I saw a neurologist on 12/8, who thought I may be having atypical partial complex seizures. Understand that at that time, the episodes were substantially worse, because my primary care physician had put me on Klonopin to try to address possible seizures and/or possible anxiety/panic attacks, which made the episodes exponentially more severe, and landed me in the ER. The ER physician explained to us various possibilities, to include an MS type disease that goes through periods of remission, a neuro-muscular disease, dystonia, or atypical partial complex seizures. He explained that the course of action should be to see a neurologist, who will conduct tests at first to "rule out the worst possibilities. The scary stuff." Then, he said there is always the option of going to Parkland in Dallas. As they are a neurological research center, the advantage is that their doctors will send their observations of me out to 15 to 20 other doctors nationwide, and say, "Hey, have you ever seen anything like this?" So, my first step was to get connected with a local neurologist.
Without going into too much detail, I will say that my neurologist determined that I should have an MRI, which turned out clear. Praise the Lord. She also determined that I should have a 72-hour EEG. However, she informed us that my insurance will not authorize a 72-hour EEG without evidence of an inconclusive routine EEG on file. So, the next step was to request the records for my 2006 EEG, which they were unable to locate. And, yet, then they ordered a 120-hour EEG, which we didn't find out insurance hadn't authorized until yesterday, when the office called to cancel my follow-up appointment, due to the fact that "You haven't had all of your diagnostics yet." So, I kindly (or not so kindly) reminded them that the plan we had originally discussed was to have a routine EEG, if they were unable to locate my previous EEG. So, I had my routine EEG today, which, in my opinion, I could have had several weeks ago, and then I could have had my follow-up appointment, as scheduled yesterday, and this ball could still be rolling. But, it's not. And, I digress.
Today's EEG lasted about 25 minutes. My prayer was that I would have an episode during the small window of opportunity, so that it would be conclusive, and we would be through with the "ruling out" of seizures. Well, this has been a crazy week of persistent episodes, and today was no different. Praise the Lord, I started having episodes with the aura at about 8:30 this morning, and they came every 45-minutes to an hour. So, during the EEG, they try to elicit a seizure by flashing a strobe light, progressing in speed with each setting. Well, let me just tell you that after the strobe light craziness, I could have sworn the bed was spinning like I'd had some sort of alcoholic overdose. It was disturbing, and I hated it! I can see how it would elicit a seizure, if you're prone to them! Seriously. NUTS. I became so very disoriented and truly had a wave of sheer panic rush over me, after which time, an episode came right on cue, right in the middle of the EEG.
Now, I can't really go into details about how or why I know this, but I do have it on pretty decent unofficial authority that my superficial EEG impressions did not show any distinct seizure activity. Of course, I will have to wait for the official reading by my neurologist, but I am feeling 100% confident that these episodes (because I definitely had one during the EEG) are not, in fact, seizure related.
My neurologist's nurse informed me that I would not be privy to my results until the time of the follow-up appointment on January 23, but I was told today that I can go to the hospital and request the written record of my results by mid-week next week, rather than waiting for my re-scheduled follow-up appointment.
And, there is one last consideration. I started on a hormonal contraceptive in mid-November, a couple of weeks before these episodes began, and I discontinued it today, to see if these episodes are in response to the medication. You may wonder why I waited so long to discontinue, but the fact of the matter is that if these episodes were seizures, even if they were caused by the medication, I felt like I would need to know if I have a propensity to seizures, induced by hormones. Even if it meant I could make it all stop by discontinuing the medication. Since I had the EEG today, and I did have an episode during the EEG, I felt like I could safely discontinue the medication today, in order to see if I can just cure myself :)
Who knows where we go from here! All I know is that, for this moment, I am basking in the relief that I am most likely not having seizures. So, I'm not going to have a freeze on my license, and I'm not going to have to poison my system with anti-convulsants, and completely alter my lifestyle right now. Do I still want answers? Yes! Do I know exactly how we're going to go about getting those answers? No! But, I am relieved that we are doing just as my ER doctor had advised, and ruling out the big bad scary stuff first!
That makes today a good day, indeed!
P.S. If you know of anyone who has experienced a similar condition, please please please let me know. I am so open to learning more about various potential avenues to explore!!
