Category Archives: Epilepsy

And it’s not Epilepsy after all…

So, after nine months of medical testing, and four months of medication induced hell, an exam from an independent source has determined I do not have Epilepsy.

Well shit.

The leading Epilepsy treatment center in the nation is located in my backyard, and thanks to the love and care of some of my friends from law school, and their dear parent who works at said center, I was able to get in to see a specialist well in advance of the normal six month wait most people have to follow to get seen. The doctor who saw me reviewed my records, tested me carefully, did a thorough history, and then announced that I do not have the dreaded Epilepsy.

What I have is a movement disorder, or basically, the worlds longest lasting hand cramp.

I do not have Epilepsy because my “seizures” jump from one side of my body to the other, without making a visit in between. I do not have Epilepsy because they can last for hours, instead of minutes.

This means I do not have to stay on this mind altering, taste altering, attitude altering, weight dropping, joint pain causing, misery enhancing, neuropathy causing, nothing seems to make me happy, anti-seizure medication for the rest of my life.

I am ramping down off of it as we speak.

I am still going to have my normal neurologist track my symptoms, just in case the other doctor got it wrong. However, everything she said made sense, and looked and sounded like sound science to me. My Epilepsy never acted like anything my Epileptic friends had gone through, and the medication had stopped helping a while ago. Oddly, Topomax is prescribed for movement disorders, so the fact that it helped initially makes sense. However, the other side effects I have make using it for me a bad idea.

So, despite being initially really mad that I had spent so long being in pain caused by medication for something I don’t have, I am cautiously optimistic. Hopefully whatever treatments are in store for the movement disorder are much better than the treatments I am currently coming off of. Hopefully I can eventually get this under control and treat it with massage and yoga, otherwise known as lifestyle changes.

Hopefully this will actually be my final diagnosis.

Another “Topo” moment…

I borrow the above lingo from my friend Kate. I have been experiencing an increasing number of unpleasant side effects from the Topomax. (My medication of choice for controlling the Dr. Strangelove style seizure accompanying my form of Epilepsy.)

Yesterday and today I have been trying to ignore a ridiculous level of joint pain and the sense that someone took a whip to the bottoms of my feet for several hours. My gums are super sensitive to pressure, bleed at the drop of a hat, and the inside of my lips feel as though I have been sucking on sour candy for days on end. The most frustrating part is that my doctor is refusing to consider that these problems may be caused by the drug. As if, in addition to suddenly coming down with Epilepsy, I have also simultaneously developed sudden onset rhumetoid arthritis, gingivitis, and a number of other ailments.

I asked her if she had ever heard of Occam’s Razor, or the law of parsimony, and then promptly scheduled an appointment with the University of Colorado Advanced Neurology Department. Thanks to a friend’s Mama, who works there, I will be seen at the end of the month. It usually takes four to sixth months to get in to see these doctors, as this is the national leading clinic for the treatment and care of Epilepsy. I am happy there are people who love me and are willing to call in favors for me right now. Bless them.

I am feeling less scattered, but still seem to be forgetting words. This terrifies me on so many levels, because I rarely if ever forget anything. One of the reasons the law appealed to me, litigation in particular, is my ability to recall, with nigh perfect clarity, conversations, things I have read, etc.  It has helped me in the courtroom on more than one occassion. This “side effect” of losing short term memory and being unable to remember words is making my job very difficult to do indeed. I am going to have to stop this drug for that reason alone if it gets any worse, regardless of how effective it has been at preventing migraines and seizures.

I only have two weeks until the new doctors examine my files, my tests, and me. Maybe they will have a different take on medication. Maybe Topomax is not the one for me, despite being 22 pounds thinner and headache free, I am thinking the downsides outnumber the up.

And your doctor is no longer here…

Hello, I would like to place you on a medication with side effects that include the following:

Anorexia, depression, metabolic acidosis (ph imbalance of the blood that can result in blindness, kidney failure, coma and death if left unchecked), and suicidal thoughts. Would that be all right with you? Excellent.

By the way, I will only respond immediately to concerns about any side effects you may experience while taking this medication during the first two weeks you are on it, after that my rapid pit bull of a receptionist will do everything in her power to hang up on you as quickly as possible each and every time you call. Got that?

Fantastic.