So, I'll try to make this short. There are a few other posts (with pictures) after this one that are much more interesting.
Went to the doctor finally! I've struggled to be "normal" the past two months. I fall asleep mid conversation, I can't wake up, when I am awake I feel like I'm in a fog and I drag myself from one place to the next, I am always one wrong event away from a total breakdown, and I just can't keep living like this. I told my doc all of this and it seems that I have failed yet another medication. They upped the meds after my week long seizure extravaganza which has helped a little with the seizures but made living unbearable. The seizures came back yesterday and I had two more today. I dread waking up wondering if I'll have that "feeling". I can totally tell if it will be a good or bad day and in the past 2 months I've had about 3 good days and about 10 seizure days. The rest have just been bad days.
So, what to do. I have failed 3 medications. I am told that I will most likely never react well to any meds at this point. I am, however, now a candidate for a surgery to implant a sort of brain pacemaker. Sounds fun eh? I really believed the next surgery I would have would be by choice.....and it is, but I was thinking more along the lines of a boob job, tummy tuck, butt lift, you know, something totally superficial. Instead, I have to pay more money to make my head work right. Luckily the surgery is not brain surgery. The device is placed under the collar bone and attached to a nerve in the neck with a sort of wire (lead). The nerve runs to the brain and the device shoots electric shocks every 5 minutes- day and night. They give you a magnet that you can swipe over the device when you feel a seizure is about to start and it can stop the seizure, lessen the length of a seizure, or make the aftermath shorter and easier to handle. I'm all for that.
We are going to go for the surgery. In the mean time I have to wean off this med and start a new med. They will implant the device and then it will take 2 weeks of healing before they can turn it on. At that point, we have to adjust the voltage to meet my needs and we go from there. I'm guessing it will be at least 2 more months before I'm "normal" again, but at least there is some hope. I had run out of hope and I was really having a hard time facing the idea of doing this for another 50 years. Here's to hope- may this be the answer to this 5 years of questions I have had.
3 comments:
Good luck, Hayley! Sounds scary. Hope it makes life back to normal again.
I know a little how you feel about the exhaustion... but mine is temporary I can't even imagine thinking it might be forever. I really hope this works for you too. You are one tough chick to have handled it all so well for as long as you have.
I'm glad you keep us all updated. I hope it works and that you can go back to normal soon.
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