Here we go again

Y’all get to help me make a decision: week in the hospital or more med tinkering, months of tests, etc.?

So I saw my new neurologist today. He didn’t have any of my records, so he had to go on what I could tell him (which was quite a lot — he hardly stopped typing his notes the whole time he was in with me). I puzzled him.

Gotta tell ya. Being the puzzle for the doctors? Getting old. Wow, that was three sentence fragments right in a row.

So this doc specializes in epilepsy and seizure disorders, and I puzzled him. Studied at Barrows in Phoenix and then did his epilepsy fellowship at Stanford for two years. And I make no sense, medically. The way I describe my seizures (or whatever they are, as it’s possible they’re not seizures at all) sounds nothing like any known seizure disorder.

He questioned me. I let him lead, because he was kind and didn’t talk down to me.

After I told him all I could think to tell him from all of his questions, he asked me if I’d ever had an MRI. Oh yes, lots. Actually, two related to the brain, and the one I didn’t mention was the one my primary sent me for when he stuck an ear-looky-thingy in my ear and I yelped in pain from a light touch. I told the doc today that I had the MRI in late 2006 or early 2007 (it all runs together, though my archives probably have a decent timeline), and that Dr. Wonderful (who, don’t get me wrong, is still Dr. Wonderful, whether he diagnosed me correctly or not) had been looking for MS but found no plaques on my spinal cord. I forgot to mention that he did find the L4 to L5 pinched nerve, but I tend to only think of that when my low back aches, such as at this moment. Anyway, new doc said that was where he was going, because MS would fit fairly well, except that if you have an MS flareup, the symptoms come and stay awhile, they don’t come intermittently as mine do, so MS doesn’t fit so well after all.

I told him about my triggers. Stress, lack of sleep, more than one glass of wine can do it, gluten, dairy. Gluten is the harshest trigger and causes the worst episodes.

I told him how the whatevers manifest. The tingling all over my body, burning in my toes, ear lobes, and fingers. I even have episodes where my scalp will suddenly light up. It feels like electricity is radiating from one spot, outward in all directions, almost like someone is pouring water on my head. They don’t always start in the same place. That is apparently not textbook for seizures.

Yet he’s baffled, because the Keppra has worked pretty well, and while many anticonvulsants and antiepileptics also work great as antidepressants and antianxiety meds, Keppra only does its magics on seizures.

He said he can rule out a spinal cord cause, because most of my episodes manifest above the spinal cord (hoo-hah tingles notwithstanding), in my face and head. Also probably not the nerves, since those would be burning sensations around the nerves rather than tingling sensations wherever. Plus, Dr. Wonderful’s wife did those horrible nerve conduction tests last year, where she zapped me over and over just to make sure I could feel pain in all my nerves, and yes, oh yes, I could feel the pain. Followed by the EMG, where she stuck me with needles all over my body while telling me to relax and keep still and apologizing for all the torture.

Which leaves the brain. And then the doc explained why the brain thing doesn’t make sense. But then why does the Keppra help me, he wonders. You know how it is — you write down all the important stuff so you remember to tell him, and then you leave the piece of paper on your desk at work or in the car, and your brain doesn’t function properly when you’re sitting in front of him, perhaps so you can drive home the notion to him that yes, my brain has issues. So I forgot to mention that when I’m having lots of the episodes, I get all ragey and irrational (a definite symptom of epilepsy), and the episodes make me really tired.

We talked about migraine. I had the headaches for three years straight, hardly a day without one, kind of just one continuous pain party. I told him that I pretty much only get the migraines if I’ve had gluten or dairy. He started the sentence about how even doctors sometimes don’t realize that… I finished it for him. “Sometimes there’s no headache with migraine.” He seemed pleased that I knew that. So he’s playing with the possibility that the seizures are not seizures at all, that they’re manifestations of migraine. If I have to choose, I pick the pulsing, buzzing, and tingling migraines over the crushing death grip migraines. And it would be kinda nice if that’s what this is, because that would be one less med, and I could take the Excedrin Migraine more often when needed, because I wouldn’t have to worry about triggering seizures. I’d just worry about triggering more migraines, but the painless kind. That’s another thing, though. If I have the Excedrin, I start having the seizures about a half hour after taking it. I’ve assumed it’s because of the healthy dose of caffeine. Ooh! I could have caffeine if this turns out to not be epilepsy!

Long, rambling story short (and I do apologize for the ramble, but I came down with one of those death grip migraines right about dinner time, and it’s not letting up any time soon), I have two options.

Option 1. He’s given me a choice of meds that I can add to the Keppra. If the chosen med helps in a big way, he weans me off the Keppra. If it doesn’t help, we may have to go to Option 2 later anyway. Meanwhile, he gets my records from Florida, reads the EEG report and hopefully gets to see the actual EEG scribbles. Also, he runs his own EEG. Compares the two to see what we’ve got going on.

Option 2. Epilepsy study at the hospital. Which means a full week in the hospital, possibly cut down to three or four days, the entire time hooked up to an EEG Tivo where they can watch all my little brainwaves in all the different sitches. Did I say sitches? Help me. Day one, they’re recording my neurons in their natural habitat, as is, with the Keppra and all that. Day two, I’m hooked up to an IV, just in case what they do next causes a big ol’ honkin’ seizure. Because day two, they take me off the Keppra cold turkey and record all the activity. Sleep deprived, strobe lights, hyperventilating, they do all that. When they’ve studied enough of my brain pan, they either put me back on the meds or they don’t.

So it’s my choice, talk it over with your husband and let me know. What do I do? I’m kind of leaning toward the hospital thing, because tinkering with meds? Never fun. Also, no sense drawing it out if we don’t have to.

Anyway, I’d appreciate the input.

17 Responses to Here we go again

  1. Hospital! doooo it.

    And I would have given my input even if you didn’t ask. :)

  2. Normally I say go with the least invasive but it sounds like the hospital may be just that. Plus it’d be nice to have a semi-quick answer, possibly.

  3. I agree – I would rather go the hospital route and get it over with.

  4. You’ve been going through this so long and adjusting meds here and there. Maybe the hospital stay can get some data you need to know what’s happening.

  5. I’d say you’ve already been down road 1 and back 10 times over. As such, I’d recommend a week in the hospital.

    Then again, my name’s not Frank.

  6. Well, I’m not your husband, but it’s my feeling that if you may wind up having to do option #2 anyway, you may as well go in whole hog and get it outta the way, without the mess of tinkering with your meds first.

  7. I’d suggest the Hosp stay– get it over with and do away with all of the waiting, trying this and that and then having to still deal with the Hosp anyway. Get your answer to whether it is a seizure or not and if it’s not, then it is less time waisted trying to find out what’s going on. Good luck! It’s not a fun road to travel, this medical health guessing game…

  8. does majority rule?
    I think the hospital route sounds like a good idea. Any adverse reactions to the cold turkey cut off
    and they will be prepared to do what is needed right then and there to help you.

  9. “Sleep deprived, strobe lights, hyperventilating, they do all that.”

    Man, when does the waterboarding start? Somebody call Dick Durbin! These so-called “doctors” sound like “Soviets in their gulags”. ;o)

  10. I’m susceptible to migraine (the ouch kind). God bless you and bring you freedom from your troubles; no matter what you choose I’ll keep you in prayer.

  11. So I forgot to mention that when I’m having lots of the episodes, I get all ragey and irrational (a definite symptom of epilepsy),

    You mean my wife has epilepsy? I didn’t realize that ragey and irrational actually had a condition.

  12. i go with the eeg now and the hospital stay after.

  13. Sure, messing with meds is no fun, but it’s a more measured way of proceeding. He doesn’t even have your records yet. Perhaps there’s something in them that a new set of eyes will notice. Test the meds and give your records a chance to ship up. If this were an ‘urgent’ case then you wouldn’t want to wait (again, your condition is no fun, but it seems to be relatively controlled right now…?). But going to the hospital will cost (many?) thousands of dollars (remember, someone’s got to pay/eat that bill) and it will be an option in a couple weeks as much as it is now… Good luck in whatever choice, and God Bless You!!!

  14. It would seem premature to commit to a hospital stay before your doctor even sees your extensive files from Fla.

  15. I agree with Walter. The first, most important thing is for your new doctor to receive all your previous medical records and study them. I am actually a little afraid for you that the doctor is recommending expensive treatments already instead of taking in all the existing information first.

    The first rule of medicine is DO NO HARM. A doctor recommending treatment before receiving all the information risks causing harm (and not just physical, but also financial).

    I would seriously SERIOUSLY look for another doctor and get a second opinion before doing any of this – and explain to the second doctor that you don’t want to commit to any new treatment until AFTER the new doctor has been able to see all your prior medical history.

  16. To clarify, the expense involved is for an intensive study of my brain, not a treatment. The new meds are just seizure meds I haven’t tried, and they’re all reviewed on Also, he gave me the options. He did not lean one way or the other. In fact, he seemed to be almost leaning against the hospital study, because he doesn’t seem to think I have epilepsy at all. And he’s an epilepsy specialist. This guy was good and actually listened when I talked. I’m not ready to dismiss him for letting me make my own choices and telling me what my options are and not being pushy one way or another. And he also did say that the #1 thing is he wants my records from my previous doc. Simmah down!

  17. I say go the whole route, get poked and prodded and get to the bottom of it. they might find out it’s not epilepsy and then you can at least rule it out.

    I had atypical migraines while I was pregnant with my daughter. Much better than typical migraines, LOL!