Saturday, April 21, 2012

My Update

Several of you have been asking about me.  Just thought that I'd get you updated.

As of last Wednesday, 2 months have passed since my VNS surgery for my epilepsy.  As time has gone, my recovery has been great.  I'm not where I need to be yet but I am sure that I will be there within the next few months.

One of the things that didn't drive me as crazy as I thought that it would is the numbness in my left to central neck.  I still have some numbness but some of my feeling is back in most places.  Nothing is totally numb anymore.  Some of my shirts that have collars still drive me bonkers when they touch my neck.  I have no problems with t-shirts anymore.  Not all patients get their sensations in their necks back.  Anytime that you're dealing with nerves, you're taking a risk of that.

Once in a great while, I feel a jolt of electricity being sent to my vagus nerve.  It is not a painful feeling.  It is very quick and does nothing more than feel like a tickle or itch.  Needless to say, it is very easy to live with.  I've only had to use my magnet against my device 2 times.  Each time was not pleasurable but it was not painful either.  It is not easy to describe other than it takes your breath away and you feel the shock throughout most of your chest.  It, too, does not last long.

I am having some short pains in my chest at about mid point in my chest.  I have already dicussed it with my cardiologist.  He does not think that it has anything to do with my heart.  He believes that there is probably some residual healing inflammation around the device.  We should know for sure next week when I meet with my neurologist.  You may remember that I was to see her this past Thursday.  I postponed that when we discovered that we had an after school meeting for our daughter, Leighlyn.  She will be in driver's education this summer.  The meeting was to go over everything.  So now, we will be seeing the doctor on Thursday.  At that time, the electricity power will be turned up even higher.  Sounds kinda scary, doesn't it?  When we had the last appointment, I was able to handle 25% of the total electricity that I'll have to have.  That was a large amount for most VNS patients.  I'm proud of that.  It'll be interesting to see how much power I can handle this time.  My goal is at least 50%.  That goal might be too much to expect though.  I'll let you know.

My seizure activity appears to be practically non-existant now.  Not all of that progress is because of the VNS.  Before my surgery, my neurologist placed me on a new anti-seizure drug named Vimpat.  I am sure that it has a lot to do with my decrease.  Vimpat has NO side effects such as drowsiness, etc.  If you know of someone with epilepsy, you might suggest this new drug to them.  I am still on Trileptal, another anti-seizure drug.  It causes great sleepiness in me.  The doctor has already told me that once the Vimpat is up to a good level and the VNS is working well, she will begin to wean me off of the Trileptal.  I can hardly wait!  Don't get me wrong about Trileptal!!!  It is the BEST anti-seizure drug I was ever on.  It gave me much better control over my seizures than I had ever had before.  I still recommend it to people.  My epilepsy had just gotten worse over time.

You may be wondering about my depression.  Well sadly, it is still here...BUT it has lessened considerably!  It is better than it has been in a very long time.  I am laughing much more often.  I am able to stay on a conversational topic much better.  I have returned to more cooking and housework than I've been able to do for a long time.  Stan and the girls are having to help less.  They appreciate that!  LOL!!!  I wish I could tell you that I am back to being a spic and span housekeeper but that would be a lie.  I truly believe that I will be soon though. 

My biggest problem with that is how exhausted I am.  I get up between 6 and 6:30 on weekdays.  I get everything started involving getting the girls ready for school, starting housework and laundry.  I do really well until about 11:00 when I sit down to eat lunch and watch my ever-important YOUNG AND THE RESTLESS.  But by that time, I've taken my morning dosage of both epileptic medicines.  During my soap opera, the drowsiness begins to slip back in.  Usually by noon or shortly after, I'm asleep again.  My nap lasts for an hour to 2 hours.  By the time I wake up, it is almost too late to get everything that I started in the morning finished before it is time for the girls to come home and time to prepare dinner.  Besides, just because I'm awake does not mean that the sleepiness is gone because it is not.  It still lingers.  I'm just able to navigate easier.  Three nights this week, I was in bed and asleep before 8:00.  I know that it is because of the strong medication that I am on.  To say that I am aggravated is putting it mildly.  I have to take both medicines 12 hours apart.  That is what is responsible for my never ending drowsiness. 

A few years ago, Stan had been sick.  When he went to take his prescription medicine, he accidentally took my Trileptal one time.  He still comments on how it totally wiped him out for the next 2 or 3 days.  He was unable to drive, etc.  That's what one little pill does.  Try taking 5 of them every 24 hours.  THEN you'll understand what it is like for me day in and day out.

So, the bottom line is that I am doing MUCH better.  The depression should be completely gone in the next 4 months.  I still have a BIG problem being in public.  I become nervous when I am.  The possibility of having a seizure in a group of people who have not been through one with me is very traumatic for me.  My seizures are embarrassing to me and my family.  Some of my friends have returned to my life.  Some still want nothing to do with me.

I just want to thank all of you who have been concerned and are praying for me.  Your visits, calls, email, etc have meant sooooo very much to me!!!


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