Thursday, January 3, 2008

A little concerned.

Over the holidays, I got a message from a perinatologist's office regarding setting up an appointment to discuss my seizures. Those of you who have known me from my previous blog have likely heard about them before. The midwife was concerned that it may not be safe to let me labor naturally, so I wasn't terribly surprised that I had a call from the perinatologists office. I don't really want to have a major seizure in the middle of labor. No sense in potentially endangering myself or Julian.

So I was a little surprised when the woman said that they were calling to schedule a Level II ultrasound. Apparently Julian's cerebellum is in the top 95% size-wise for estimated gestational age (utilizing early ultrasound dating - using my LMP it's perfectly normal). I'm a nervous wreck at the moment, worried about him. And worried about me. I had a mild seizure this morning on the train on the way to work, and I'm having to face the fact that I can't continue to do this alone - pretending that I'm fine when I'm not.

For those of you who don't know the backstory - here it is, in greatly summarized form.

In my last year of law school, I was driving to grab a bite to eat when I had a seizure - and blacked out. I hit my head against the steering wheel, and thankfully during the 'fit' I managed to slam the gear shift into park and halfway jumped a curb. Somehow during the madness, I bit my tongue rather forcefully - almost straight through it - and my mouth quickly filled with blood. Thankfully I was on a side street and I managed to coast slowly into a gas station where I promptly fainted. I got a nice sized bump on the head from the fainting spell, but was otherwise o.k. When I finally made my way back to school, I walked into my ex-husband's office and told him what happened. He wanted to go to the hospital immediately, but I begged him not to take me. We went home instead, and I promptly fell asleep for about fifteen straight hours. I went to a cardiologist the next day - and was immediately whisked from specialist to specialist. The next few days were a blur of EKGs, EEGs, x-rays, MRIs, and a great deal of bloodletting to check on blood sugar imbalances, hormones, etc.

During the doctor's visits I realized that I've always had these little "spells." Growing up, my great-grandmother said someone was walking over my grave when I did it. Sometimes I could feel them coming on, but not always. When I did, they were preceded by a tightness and pain in my chest and back - and a feeling of pressure as if I was being crushed. My vision always tunneled immediately before it happened and the sounds of life around me grew strangely quiet. I also had a completely indescribable feeling of great anxiety that something bad about to happen, but I could never place what it was, and words can't really do it justice.

Afterward, there was always a peculiar metal taste in my mouth - like sucking on a spoon - and an overwhelming desire to immediately go to sleep. Sometimes - when they are really bad - my arms flail out (sometimes one, sometimes both) and I will involuntarily strike out at someone. It can be quite embarrassing at times - sort of a physical Tourettes. My back clenches up and people who have seen it say that it looks like I think I'm falling and am trying to instinctively brace myself. Milder versions cause me to just space out a little. I can hear people talking around me - but their voices sound very far away - like the muffled conversations of people living in the next apartment drifting through air vents when I was in college.

As I have had previous brain surgery (when I was two months old) to remove a cyst/tumor, the doctors thought it may be either a recurring tumor or possibly scarring of the brain tissue. During one of the trips to the neurologist, after yet another brain scan, the doctor told us that in all likelihood that it was epilepsy or multiple sclerosis. I sobbed. It was the one - and only time that I've ever seen my ex cry. No swimming, no bathing or showering without the door open and someone in the bathroom with me, no driving, no cooking, no being alone - period - under any circumstances for nearly four and a half months. I couldn't do anything.

I was poked and prodded and sent to every specialist they could find. They ruled out epilepsy and we rejoiced. They ruled out m.s. and we cried with joy. But they never found out what the problem is. Stress, exhaustion and alcohol seemed to exacerbate the problem. Of course, since I was studying for the bar at the time, two of the three were a little difficult to control (and in fact I had a 'medium' seizure during the middle of the exam). I have never had another grand mal seizure like the one that finally spurned me to go to the doctor. I have had hundreds of other - small ones - but have accepted it as part of who I am. They seem to cluster at a time - and it's been a while since I've had one. I was told that I could slowly start incorporating my "regular" life back into my schedule.

I've never been medicated for them. After contrast MRIs, brain scans, EKGs, EEGs, etc. the neurologist that I was seeing couldn't figure out what was causing them. He intimated that perhaps I was just making them up. I was so defeated that I honestly started worrying that I was - somehow unconsciously manifesting these symptoms without a legitimate cause. I refused to go back to see the doctor, saying that I was obviously fine since they couldn't figure out what was wrong.

I have a neurologist appointment at one of the best research hospitals in the country next Tuesday. It's amazing how easy it is to get in to see a doctor when you say "seizure" and "pregnancy" in the same sentence. I have the Level II ultrasound a week and a day later.

I'm just trying to cross my fingers and hope everything's going to be o.k.


daysgoby said...

Wow. I'm epileptic, and you did a terrific job of describing what happens during a seizure - right down to the 'sound washes in and out' sensation.

I think they might put you on meds,honey, just for your pregnancy. The way I understood it, the danger to my babies of me having a seizure was worse than any side effects of the medication.
(I'm on Tegretol. The main problem with pregnant people taking that was neural tube defects, and J's is already formed.)

It sounds like you're going to terrific doctors!

orodemniades said...

Er, I thought Level II ultrasounds were, um, a normal part of the pregnancy thing? Come to think of it, I don't know any pregnant woman on the lc board or mailing list that hasn't had one at the appropriate time?

Your story reminds me of someone I used to know who had similar seizures, she was finally diagnosed with something, but darned if I can recall what. I don't think it was epilepsy per se, but something unrelated with gave those mini seizures...must ponder.

Scoutj said...

Oh A. Fingers crossed too.