I thought that I was doing really well. The meds were all set, nothing changing much for over two months. Now I think lots of things will be changing, and I'm not okay with it.
Let's rewind to the time of my last post. I went to see the doctor and I voiced my concerns RE: lamotrigine, headaches, and paresthesia. He seemed acutely aware of these side effects, and bemoaned that some patients end up with those skull-crushers, and that those headaches are serious because they can be related to aseptic meningitis. (Nice of him to lay that on me.) So he dropped my dose down to 100mg. Next day, at the lower dose, get a headache. Next day, nothing really changes.
On Friday everything went to shit. I started feeling these creepy-crawly tingles all over my body, like little ants marching in lines. I tried to keep my wits about me - I'm cold and I'm just shivering, I'm just dirty and need a shower, Probably just a side effect, It's not real, It will go away. It didn't go away. My thoughts were constantly racing, thinking as I moved around the house that there were dead bugs falling onto me as I dusted, that there were little spiders or ants or other vermin that were going to bite me and poison me and give a seizure like I had when I was a kid. (When I was two years old I stepped in a fire ant nest near our Houston apartment. I was bitten so many times I had a seizure in the ER.) I felt the ants crawling in my hair, on my back, my face and my ears, every now and then on my legs or my chest. I would swat at the area or try to scratch them away, but of course there's nothing there. Except that I could feel SOMETHING THERE but I couldn't see it.
I waited it out through Friday, Saturday, Sunday.... I was so afraid to say it out loud and make it real. I wanted it to be just some little side effect that went away in a few days. So I waited all weekend, hoping it would stop. Trying not to bring attention to myself as I scratch and swat at invisible bugs. On Monday I call the doctor's office, and the receptionist takes a message. My call is not returned that day. Still crawling. When I see Lisa on Tuesday, I'm a mess. I spend the entire appointment tearful, periodically springing to scratch away my pests. She, concerned, tells me to call the doctor again. I call the doctor's office back and stress the urgency of the situation. Within an hour or two the doctor is on the phone with me. I ask him, is this just from lowering the lamotrigine? He says no. He says it's psychosis, and a mixed episode. There's talk of Depakote and Geodon. He tells me to immediately drop to 50mg on lamotrigine, and to double the Seroquel. That's a heavy-duty dose of Seroquel, 600mg.
Well, after my first mega-dose of Seroquel, the formications (fancy word for this particular kind of hallucination) were cut by about 50%. Three days after the dose increase they're mostly gone, but spring up episodically throughout the day. Much less severe. Still disturbing. Still can't believe it's happening.
In other news, four years after my last visit, I finally went to the gynecologist. I have an endocrine disorder that I had previously achieved remission with by making some pretty stringent lifestyle changes a few years ago. Unfortunately in recent years I haven't been able to maintain that part of my health like I should. So I started having hair loss and abnormal hair growth, a lot more acne and no period in seven months. I've had the endocrine thing figured out for the past seven years, and so when all of that started happening, I knew what to do. So, now I'm on a 10-day course of Provera 10mg, followed by a monthly NuvaRing.
This is significant because it means that Dr. Yasar's idea of Depakote is probably not going to work, it has caused hormone problems in many studies. Apparently most other epileptic mood stabilizer drugs fuck with estrogen levels. The only ones that don't are Keppra, Neurontin, and Zonegran. (And Lamictal, but I'm on my way off that train.) So, I don't know what the heck he's going to do, except for switch me off Seroquel and on to Zyprexa or Geodon. I like the idea of Zonegran, but it's like way, way off-label for bipolar and is a big deal seizure/migraine drug. But apparently it helps with weight loss and has been effective for some people as a mood stabilizer. I see him in four days or so so... I'll make myself a list of concerns/issues/options and we'll figure something out.
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