What a day.

Hopeful. It’s hard to imagine using that word and really, truly meaning it with regards to my health problems. But I am fairly hopeful today.

I saw my epileptologist today; I had my appointment moved way up because they don’t give results over the phone, and I wasn’t willing to wait until the end of September to get my diagnosis (or undiagnosis). So they put me in with the PA, and the epileptologist and his shadowing med student came in halfway through the appointment.

I felt really, really bad for the PA. He was sporting a migraine, and by the way he was having a hard time finishing his sentences, I could tell it was a doozy. I’ve had many migraines just as debilitating, and I know that you simply cannot function. I don’t know how you even deal with patients in that state.

I briefly went over my medical history with him, the gluten trouble, all that. I made a point of mentioning that as soon as I stopped gluten, my migraines went away, and I only have one if I get glutened. He looked at me with wide eyes. “That is huge,” he said. I agreed. I gave him a brief overview of celiac and gluten intolerance and pointed out that over 50% of true celiacs have no GI symptoms at all. Later, as we ended the appointment, he told me that he’s going to keep celiac and gluten intolerance in mind for his other patients. I hope he is able to help at least some of them.

I told the PA about my appointment with Dr. Super-Fantastico and the labs coming back normal. Also told him I’d reduced my night dose of Keppra to 500 (from 1000) and that nothing has gotten worse, and if anything, the facial radiations and scalp tinglies have decreased. He left, and in a few minutes, the PA came back with the epileptologist and the shadowing med student.

EEG results are in. It is very unlikely that I have epilepsy. I am still reeling a little about the results, though. The EEG showed an abnormality, a slowing of brain activity in the left temporal lobe. My Florida EEG also showed an abnormality in the left temporal lobe, so that is consistent across two EEGs, so it was there in 2006 and is there in 2008. My doctor said it is non-specific, meaning it is not seizure-related and they don’t know the cause. It could be a tumor (but that is unlikely considering I’ve had an enhanced brain MRI and a full body MRI), I could have a brain injury from a hard hit to the head (I don’t remember any other than my normal klutzy head-hitting, but then again, I might not remember something that would injure my brain like that), or it’s possible I’ve had a stroke in the past. The only major accident I can think of is my big bike crash in 2002, the one that left me with a volleyball-sized thigh bruise — nay, contusion — that lingered for six months, but I don’t remember hitting my head on the pavement, only killing my right thigh, scarring up my right forearm in a nasty way, and taking a nice chunk out of my left knee. I was wearing a helmet, too. Stroke, on the other hand, seems pretty likely. Migraineurs have twice as much stroke risk as people who do not suffer migraines, and add in oral contraceptives (I was on them for eight years total), and the risk is multiplied by eight.

As a side note, I like what about.com says about when you should go to the ER:

*If you have the worst headache or Migraine of your life. Extreme head pain can be a symptom of a stroke.
*If you have a severe, unremitting Migraine for more than 72 hours, it is Status Migrainous, and you should call your doctor or go to the ER.

Lemme tell you, anytime you have a migraine headache, you have extreme head pain. I mean, there are dull migraines, but they still hurt. The big killer ones came very often for me before Ceri and others helped me find my poison in gluten. “If you have the worst headache or Migraine of your life” describes many headaches for me. I remember when I first had them, I had been having them for a couple of months and was living at my apartment in Bedford, working for the CPA firm in Fort Worth. I had one spell where I didn’t get out of bed except for peeing and small amounts of food and water for a good three days, because I was in so much pain. That was the worst one. There were many that made me cry, but that killer was during the period when I had to wear sunglasses indoors at midnight. I wasn’t yet used to the headaches, and I felt tortured.

So yeah, I can see stroke as a possibility for my slow left temporal lobe.

Oh, and the EEG report that suggested the epilepsy in the first place? The person who wrote the report said my left temporal lobe slowing was consistent with what boils down to hypotension-triggered-seizures. I said, “Wait, does that say my low blood pressure triggers seizures?” Yep, that’s what it says. My doc thought it was “cute.”

I mentioned the normal blood tests to the epileptologist and that Dr. Super-Fantastico had thought B-12 could be the culprit on the tinglies. He asked if I knew where in the normal range I was, and no, I have that appointment Thursday. So they got on the phone with Dr. Super-Fantastico’s office to ask them to fax over the lab results. Meanwhile, he explained to me that if the B-12 is in the normal range, but low in the normal range, and if my — hang on, they wrote it down for me — homocysteine and methylmalonic acid (MMA) levels are elevated, then I would still have a functional B-12 deficiency. The labs came in, and their eyes got all big, and they all hovered. Dr. Epilepsy (who is actually Dr. Wechsler) said that anything below 350 is in the danger zone for B-12 deficiency, and I’m at 271. I smiled big and got all high-school-giddy. “Really? That would be so great!”

So here’s what we’re doing. He wrote up the order for the homocysteine and MMA blood tests (I went straight to the hospital and dropped off some blood for that), and we’re decreasing my Keppra. They’re going to monitor me closely over the next two months. I drop my Keppra by 250mg for six days, then by another 250 for three weeks. Meanwhile, he’s hoping the bloodwork will be done in time for my appointment with Dr. Super-Fantastico this week, and he’s going to send it to her as soon as he has it. If it does show a mild B-12 deficiency, Dr. S-F would be the one to do the B-12 shots for me. I get the B-12 shots, and in a month, I call Dr. Epilepsy to tell him if I’m feeling better and having fewer tinglies. If I start to get worse with the lowering of the Keppra, I come in right away to see him. I see him again in two months, and if I’m feeling better and the B-12 is helping, then he can un-diagnose me with epilepsy.

We’ll see. If the new blood work shows elevated levels, I’m going to ask Dr. Super-Fantastico if I should see a cardiologist. I don’t like the whole possibility of stroke thing, and elevated homocysteine sounds like a possible risk factor for heart disease, stroke, all that fun stuff. BUT, and this is for my mother, who is probably “stroking out,” as she is wont to say in these situations, the B-12 deficiency would be the cause of the elevated homocysteine, and the gluten intolerance would be the cause of my B-12 deficiency. I’ve only had the symptoms of B-12 deficiency for two years and the GI for four, so no need to stroke out over this just yet, Ma.

I’ll keep you posted. It’s what I do.

11 Responses to What a day.

  1. Stroke? Tell me the risk drops again once you get off the pills, yeah? Yikes. I’ve had migraines, though not in many years, thank God. I wonder why PA even was still at work with one.

    Good luck with the B-12/[unspellable thing]/MMA plan.

  2. ditto, I hope the B-12 thing will work out for improving your health.

  3. I only had migraines when I was on the pill, and they weren’t that bad, hearing your stories. Just enough to want to lie down with the lights out and the room quiet.

    Anyway, I don’t want to say “light at the end of the tunnel” just yet, but this is definitely a good piece of news!

  4. glad you’re finding out stuff, even if there is nothing definative yet.

  5. Thanks for writing this, Sarah, for two reasons.

    The good reason is that we all want you to be all right, and like to know how you’re doing; the bad reason is that some of the things you describe seem to fit my much milder problems, particularly migraine/low blood pressure. Not that I’m ever aware of having had a seizure, but I’ve passed out a few times just from standing up too fast and seem to have confused memories of what was going on while I was slumped over. It’s that 95/60 I’ve had for most of my life. As I’ve gotten older my BP has climbed a bit and I don’t have the migraines or the dizzy/light-headedness nearly as often.

    You’re helping folks just being open with your troubles. You see it a lot with celiacs, I know, but I’m grateful even though my troubles are meager. Thanks!

  6. hey…i just read this. your mama is not panicking. i think even a past stroke is a warning for change so i am glad you got off the pill and changed your diet. now if we could just raise your blood pressure a little…guess i could come live with ya. ha! j/k…did they check your iodine levels as well? thanks for keeping me updated. i love you! ma

  7. ps: your mama always told you vitamin b was good for you huh? see..you did get it from your m a m a.

  8. Good to hear that you are _finally_ getting some answers.

  9. Man, I am hoping your visit was shorter than your post! ;)

    Seriously, though, really hopeful at the prospect of no epilepsy and the B12 helping you out.

  10. Who’d a thought that a B12 shortage can wreak so much havoc? Just goes to show how delicate the systems of the body really are!

    Hope you feel better!!

  11. My dad used to get B-12 shots because his liver was damaged by years of welding in closed boxes.

    He’s told me that after the shot, he would have to *race* home because it would make him so tired that he would pass out on the couch. If he got caught in traffic, he would pull into a parking lot and sleep for a couple of hours. Be prepared for that.