Yesterday I went to the super god of neurology, who Vince said was going to be the code breaker who could figure it all out. And he did, I think. Thus I close one chapter and open the next.
The week was one long crucible of stress, kicked off early by an unlikely situation at my barium swallow. I had to go to the hospital in Akron to have this test in which I would drink barium and they would x-ray me in that proces– this being a follow-up to my chest-pain-probably esophagus ER visit a couple weeks ago. (God!! This has been just ridiculous.) So I had to fast– no food or drink for 12 hours previous, and go there and put on a little gown. Ben had to rearrange his schedule wildly so that he could get Elias and I could do this. But when I got there I flunked question one– when was your last period? I disclosed that it was more than 28 days ago, and indeed just a wee bit late. And then the lady flat-out refused to x-ray my abdomen unless I could prove via blood test my non-pregnancy. I tried in vain to convince her of the absurdity of that notion… but without proof, no luck. The blood test involved getting dressed and going to the lab in a different building, waiting a few hours hours and with luck getting back into the radiology schedule. Thus logistically impossible that day. I had to get dressed and leave, thinking the whole thing would be resolved by the morning for sure.
But then it wasn't. The head noise, and the what-ifs, began in earnest. How could I get through a high-risk pregnancy with this horrible vestibular condition AND two wild boys?? I began having extended conversations in my head, between my sane and insane lobes.
Insane: well, we could just move the boys into Isaac's room in bunkbeds and then make Elias's room the nursery…
Sane: don't think like that– it's just a little late…
Insane: Maybe we'd get our girl! You know, little red-headed angelic Josephine…
Sane: now, hush! There's no substance to it at all. You're 43. How fertile do you think you are?
Insane: but a third boy??? Just shoot me now! I couldn't survive that.
Sane: Shut. Up.
Insane: And the pregnancy itself?? WHile dizzy!!? We'd need a nanny! How can we afford that?
Sane: Shut. The. F. Up. I'm serious. STOP!!
Insane: But babies are so cute… the little pink feet..
That type of thing. Finally it got so bad that I had to go and get an EPT and pee on it. Negative! Hello! And still, the insanity didn't end there. What if it was faulty? Those things have been wrong before. Etc.
So this was going on as I was prepping myself for the big life-altering appointment with this incredible neurologist in Cleveland. But I'm a cycle of hope and disappointment with these people, and even now, the next day, when all is calm, I'm still sitting here thinking, my third diagnosis. I hope my last. But what if this is another link in the chain, and I'll try this for three months, and then something new will come along?
I spent the afternoon trying to figure out whether or not to ask the neurologist for a blood test to confirm my non-pregnancy, while also trying to organize my entire narrative of this whole now six-month ordeal of dizziness, getting my facts in order, trying to anticipate questions and formulate cogent answers. When I got there I was in quite a state, dizzy of course, trying to restrain my pregnancy thoughts and focus on the much more pressing and large matter at hand.
I won't name the dr., but he is a lovely shortish man of Indian descent (Indian guy on The Daily SHow talking about Sanjay Gupta: "We're all neurosurgeons, Jon! Everyone in the country! We're just born with a basic MD and take it from there!"). He came in with the most incredible woman– a plastic surgery victim in the extreme. Her lips had been inflated with unreasonable amounts of collagen, to say nothing of her chestal regions. She had long dyed hair and also tons of make-up and ridiculous clothing that included but was not limited to black lace footless tights and ballet slippers. I initially found her appearance off-putting in the extreme, but by the end she was my best buddy, intelligent and perceptive, asking probing questions with just the right amount of sympathy.
In any case, the dr began by asking me to tell the whole story. This in itself I appreciated, as giving the four-minute executive summary never is good enough with a case this complicated. "You'll find I do things a lot differently than the other doctors, and more of my patients are like you– having seen countless doctors and been told 'Well, either you'll get better or you won't. Have a nice life!'" Which is pretty much verbatim what happen with the vestibular goddess.
He went over everything with a fine tooth comb. At one point he asked me a list of things that bother me when I'm in a dizzy state. When we got to smells, I said, "Oh god! I can't tolerate anything when I'm like that. It all makes me so nauseated!" At this he broke into a huge smile and announced, "I think we can fix you."
He put me through a bunch of tests, pushing and pulling my limbs, making me walk (or attempt to walk, as I was all over the place). Then the poked me here and there with a safety pin, not drawing blood or anything. One telling moment was when he was poking my forehead. He asked me whether the sensation changed and I said, "It was a little stronger there towards the top." And he said, "That's interesting– I was poking in the same place the whole time." It felt to me like he was poking in a line going up from my eyebrow to the top of my forehead. So too on my cheeks, it seemed to me that he was poking along from my cheek to the outside of my eye, but in fact he was staying on the same spot the whole time. He was intrigued by my feet issues (and hands too– I told him about the dry rice and beans they make me fondle at vestibular therapy, ugh) and quickly provoked dizziness by vibrating my toes with a machine.
Then he walked out and came back in for the big reveal. I even joked with the plastic surgery victim that it was like a reality show. He said, "I am now going to say a word to you that will be very surprising: migraine." Well, I wasn't totally surprised, because this has been on Vince's mind for a while and many people on the Dizzy Lounge have what's called Migraine Aggravated Vertigo (MAV). The dr explained, "It's not a migraine headache– it's a migraine syndrome. It's the brain not processing sensory input correctly."
He went on to explain that the ear thing probably kicked it all off. "It's like you had a pile of wood in your back yard for years– the tendency to migraine– and then one day someone threw a match on it, that was viral labyrinthis from your upper respiratory infections. Now it's blazing. we can take out the match– your ear can pretty much heal up– but that doesn't stop the fire now." Another analogy he used is, "If your mouse, your keyboard, and your monitor all start acting weird on the same day, is it more likely that you just have terrible luck and three separate things broke at once? Or is it more likely that the central thing they all rely on– the computer itself– is broken?"
Today at vestibular therapy, Vince referred to my brain as "diseased." As in "… When we're dealing with a brain as diseased as yours…"
That's the other thing: vestibular therapy is now over, effective immediately. Seems if migraine is the problem, vestibular therapy makes it worse. Vince did help with my neck flexibility and strength, which is a major balance center, and also my ankles. But with migraine all you're doing is irritating those already irritated nerve endings and making the system even more hyper-reactive.
The dr now wants to put me on a drug called cymbalta. He says we have to break the cycle and get the nervous system to calm down, stop the dominos, and get things back to normal. He said, "It might make you feel a little like Jimmy Buffet." (i.e,. wastin' away in margaritaville). It's an anxiety and depression drug that has a secondary use for cases like mine. I read a little about it last night and didn't feel good about it at all– side effects, withdrawal symptoms, for instance. But I talked with Vince about it and he said he's known lots of people who've found it to be incredibly helpful. He says this dr is not pill-happy and actually rarely suggests things like this, and so wouldn't do it lightly. But he also says it might take a while, 30-60 days to settle into it and to get the dose right and I might be on it for a year!
I'm so scared of that! That sounds like it's fraught with a whole bunch of other issues and complexities. But by the same token, I'm sitting here on December 4th with thong sandals on and I'm really getting desperate. If something– a magic pill for instance, which is just what I've been wishing for– could come along and make it go away, so that I could FUNCTION again, well, that would be great. And would being stoned for the holidays really be so bad?
But before I could do that, I first have to wean Elias. Messing with my brain chemistry is one thing, but his? No. Also, you may be aware that he's over three and really more than big enough to stop nursing. It's not out of the blue. We've been working on it for months, and are down to really once or twice a day. We've had a sticker motivational program going too, and had set a hard deadline of Christmas. But now I've bumped that up to, well, last night. We nursed our last. I explained it all to Elias, and he was sad and cried a little bit. But as early as today, he wanted to nurse at naptime and I told him "We don't nurse anymore."He was upset, but ultimately settled down to drink egg nog (pasturized and non-alcoholic, obviously) and sit in my lap. So I think the weekend might be a little rough on both of us– hello, cabbage!!– but come Monday I'll be able to declare us weaned.
Also, you'll be as relieved as I to learn that the whole pregnancy scare is over. All is well. No need to start ripping out walls to build a nursery anytime soon (or ever I hope!). Now I just have to get my head around a new diagnosis and think through this drug treatment option.
Onward.