Klonopin. I have been taking Klonopin or a similar drug for
almost 2 years to reduce anxiety. At first I was only going
to take it for a few days until I moved to a different
seizure medicine. But that medicine did not help me very
much and I quickly became 'addicted' to this type of drug.
My doctor at OSU and Abi have both wanted me to get off this
drug, but Dr. Moore suggested we wait till I had found a
drug to control my seizures first since I was already
dependant on Klonopin. I certainly didn't want to do
anything else - so that was fine with me.
Last month I was as stable as I have ever been. I still had
2 to 3 seizures a month, but they were very manageable and
my life was in a comfortable rhythm as well. When I went to
see Dr. Moore, we talked about how I might adjust my
medicine and I talked about how I had 'played out' all the
current medicines I am taking. I could either leave them
alone, get rid of one or add another. I suggested this
might be a good time to get rid of the Klonopin and increase
one of the other drugs to compensate a little. So that's
what we did.
Sound relatively straight forward, right?
It has been an arduous process. I was taking 2 mg/day of
Klonopin, so I removed 1/2 mg per week from my daily
medicine intake for 1 month. I always made the change on
Friday so I'd have the weekend to adjust to the change…
At first, I thought it was no big deal. Then the next day I
was out running my 'normal 2 mile route' and I almost fell
in the street when a seizure started. I carried myself like
a spider to the side of the road. It was creepy….I haven't
been running again since this process progressed.
After the first week, I was having small seizures a few
times day. Usually this meant I'd need to sit down, breath
deeply, let my hearth race…and be like that for a minute or
two. Then they would pass.
I continued to work and to be with the kids till Abi got
home from work, but I felt myself pulling away from the
world as I had when my seizures first returned. I was
trying to avoid most situations that might trigger seizures.
The second week I had about 4 small seizures a day. I wrote
Dr. Moore to ask if this was to be expected and he said that
is was and that I should take care of myself. Through the
second and third weeks I had an uncomfortable feeling…a
little 'jittery.' I started saying to my self, "a seizure a
day keeps the doctor away…have you had your seizure today?"
Then week four. I took my last Klonopin on Thursday night.
The weekend was very difficult. I stayed in the house and
mostly in bed. I was shaking for the first time which I
associate with addiction. I could not sleep well. So I
figured this is the worst of it and I'll be past it in a few
days and be back to work.
No.
Monday through Wednesday, my seizures got more
significant…back to the head turning and vocalizing rather
than the more controlled type. By Wednesday I was having 4
significant seizures a day and I was getting pretty scared.
Dr. Moore said if I did not feel better on Thursday, I
should consider taking a small dose of Klonopin again.
And - Thursday was better than Wednesday. Each day I felt a
little better. So I thought…now I'm on my way. I was back
to having mostly small seizures again and feeling okay.
So last Monday, I worked in the morning at YSI and at home
in the afternoon. When okay, but left me pretty tired.
Tuesday and Wednesday, I went to work and stayed for about 2
hours and then when home because I was so tired I felt
unsteady on my feet…like I might fall at any time. Worried
again - I called my family doctor. He said - yup, that's an
effect of the medicine withdraw. Oh man! I asked him what
I should look for with this recovery. He said, "this week
should always be better than last week."
That's were I am today. Kinda tired. Physical activity
sometimes brings on a seizure. I have four to six small
seizures a day (and there intensity is decreasing). I
sometimes have one significant seizure a day. And I'll see
what next week brings.
More of the emotional side
===================
As I have gotten off Klonopin, I have been more emotional -
as expected. One surprise to me is that I used to feel
seizures coming as an event in my head…now I feel them as a
mini panic attack in my chest first. When I feel this, it
may or may not become a seizure (often depending on the
severity of the feeling).
Other emotions have come pouring out. A few times I've
cried out a deep soulful cry. I sound like a wolf howling.
My throat aches if a try to make less sound. I feel base
fear and sadness.
When I'm done I expect to feel some release. I feel less
pressure but I don't feel more freedom.
The past five weeks have felt like I've been sick all over
again. The kids have been worried. Abi has been worried.
I have too. Even now I don't know when I'll be more stable.
I feeling really crappy about the things I can't do well
right now….especially the ones I did pretty well last
month. Like I'm coaching soccer again and it's a lot harder
to be there for the kids. Like I am working, but it is
hard to give work my full concentration. Like it's hard
to be with the family as much when I am so internally
focused.
And onward….Several people have told me I should expect a
four to six week recovery period from Klonopin. I go to see
Dr. Moore Wednesday.
One week at a time.
Three Year Mark
============
I just past the three year anniversary of my surgery. To
celebrate, I went to get an MRI and visit Dr. Goodman to
talk about it. He gave me a 'everything looks good' report!
And we'll do this next year and every year after that….
--------------------------
I hope this message finds each of you well and in good
spirits. Thanks again for participating in my journey.
With love and thanks,