Epilepsy Story

 July 2014

It’s been almost a year since I’ve added anything to my epilepsy story.  Back in August I was anxious to wrap up the history of my diagnosis.  I wanted to wrap up the discussion of epilepsy all together really.  I didn’t really want it to be a focus.  I’ve heard of epilepsy cases far worse than mine so it just seemed wrong to talk about mine.  I’ve said it before, the last thing I want is for anyone to feel bad for me.  When I share things I worry that that is what it seems like I’m doing – looking for pity.  I’d rather joke about myself and brush it under the rug.  I do have my moments though but I try really hard to keep it low-key.     

Since I still have epilepsy and it is not going away, I realize I can’t avoid the topic all together. I’ll post here and there as I see fit.  Having opened this section again, I’ve gone back and read this section and wow is it hard to follow at times.  I’m not going to change it though, I think it says enough and it gives a pretty good idea of how my mind bounces.  I’m not embarrassed to say I have this condition, it’s kinda hard to explain why I handle it the way I do though.  Maybe its my age or because I have late on-set.  Possibly my sarcasm just handles it for me.  I certainly hope for a cure and always think about those who suffer each day.  I don’t think of myself as a good advocate though and sometimes I feel bad about that.  My friend Whitney, who is a very good advocate, has told me its ok.  I don’t have it in me to do as she does and I have told her that.  She works hard spreading awareness through her organization www.cf-epilepsy.com.  Sometimes I feel guilty that I don’t do more but I do spread awareness in my own small way and she has told me I shouldn’t feel bad about the choice I have made.  She knows I support her and others and that is my way of contributing.  

My current state is pretty much the same.  No real change in seizures.  Dilantin is being adjusted once again and I never do well with the changes.  It takes a while for me to feel normal again.  Hopefully my Dr. is not giving up on medications but at last visit he wasn’t too positive.  There is only so much he can do with intractable epilepsy.  I am not currently ready to head off to surgery so he said the Vagus Nerve Stimulator is a possible option.  It bothers me a bit to think of going any route but medication.  I know all will be fine, it always is.             

August 15, 2013

Back to the surgery candidate process that I went through the end of 2012.  In December I was set to have a Neurocognitive Assessment.  I admit I must not have been paying close attention when I was told what that particular test would entail.  I had been told that I should arrive the night before.  I was to start the test first thing in the morning.  The process could take 4 to 6 hours – that was from the point of check in to being done and walking out the door.  Nothing painful.  No shots, blood, iv’s, nothing like that.  At that I tuned out I guess.  No pain, no hospital stay, perfect!  The word test is used so often and that is exactly what this Assessment was considered, a test.  Totally my fault for not asking questions.  I didn’t look further into it, read nothing about it on-line.  I really had no idea about what I was going to have to do.

My Mom and Dad came up so my Mom could drive me to UVA.  My husband had to work and my daughter was in school.  My Mom and I left early afternoon the day before the test and my Dad was going to get my daughter off the bus and on to dance.  All went as planned.  My Mom and I stayed in a hotel near the hospital so we would be close by the West Complex where my test was going to be done.

We were up early the next morning and headed over for my appointment.  I checked in and was then sent to the test area.  I was being tested in The Department of Psychiatry and Neruobehavioral Sciences.  All good right?  Lets face it though, when we hear Psychiatry it can be a little intimidating right?  I was told how long I should plan on being there and the gist was that I was going to be asked a shit load of questions.  I certainly could do that but at the same time I wasn’t sure how I felt about being analyzed.  Anyway, my Mom decided to head back to the hotel, no need for her to sit in a waiting room for approx. 4 hours.

I met with two Dr.’s who asked me several general questions and then explained a bit about their role in the surgical candidate process.  Side note, I am remembering all this info best I can.  So, my diagnosis had been given to them.  The approximate focal point of seizure activity had been given and they would ask a series of questions that would help determine my brain function.  Which side of my brain was functioning stronger and analyze my cognitive abilities.  Cognitive abilities being our brain based skills, these skills are broken down into various areas – I guess!  He was explaining very complex stuff to me but basically they were trying to find my strengths and weaknesses.  They determine all this by asking questions.  Repeat information, draw pictures and complete a computer test – to name a few.  He then said I could request a break whenever I needed.  I kinda chuckled and said ok.  He told me I may find it very frustrating and getting upset was normal.  The whole time I was thinking how the hell could it be so bad?

Within the first five minutes I realized what the Dr. meant.  Five minutes in and I wanted to the rip the paper out of the test administrators hand.  I had in no way prepared myself for this.  A brain assessment, no pain, no hospital stay – how bad could it be?  I was going to be in a room with this lady for 4 to 6 hours with her hammering shit at me.  Read me a story and then tell me to tell you everything I remember.  Lady I don’t remember if I had a muffin with my coffee and you want me to tell you multiple details of story?  What was the girl’s name in the story?  I don’t F’n know!!!  What was the horses name?  I don’t know, was there a horse in the story?  I was told to say as many words that start with the letter A but no names.  Then a second story.  Instead of me telling her what I remember she asks me if certain things were in the first story or the second.  The computer game was the worst!!  I failed.  No joke, I literally failed that test.  It was matching cards but in the middle of matching the game switched up what you were trying to match and it kept track of how long it took you to figure out the new pattern.  The peg game with one hand was not good either.  Anyway, that’s just the few things that stick out!  4 hours of that.  I was pissed when I left.  It was amazing how frustrated I was.

The outcome, based on the diagnoses they were given, the impairments that I have are what they expected.  My cognitive abilities are good.  I was better than average/good in verbal learning.  Unfortunately the area’s where I was down, I was bad.   My motor skills were down.  My right side is lower than average and my left side is impaired.  My executive functions also came down.  I was below average on a couple of the tests and my cognitive flexibility was just plain bad.  I was reminded that the Neuro/Psych Dept had been given a specific diagnosis.  The assessment they had given me was one more test in the surgery candidate process.   Their tests were to help give the Dr.’s confirmation of their findings.  Maybe a nice way of saying, honey don’t take the impairments and lower than average results in a bad way.

So to conclude this story and no longer re-live this, I am going to wrap up the surgery process.  I received a letter at the end of January 2013 from UVA.  The committee met about my case.  Currently they suspect that my seizures are most likely coming from the left side of my brain.  They suspect from my left frontal lobe, particularly from the malformation they’ve seen on my MRI.  They were not able to confirm that when they reviewed my seizures during the time of my hospital stay in August of 2012.  The next step is intracranial monitoring.  This would require wires being placed inside my head on the surface of my brain.  They’d be done while asleep in the OR and then a night in ICU.  After that, a two-week stay or longer in the epilepsy monitoring unit where my medications would be stopped.

My husband and I have decided to stopped the process right now.  I will be making a return visit at some point for a complete rundown but we are no longer prepared to continue.  We’ve been told that everyone is different and we are open to that.  We’ve also been told that I am not an open and shut case.  The statistics we’ve been given are not great.  This is very rough but we are told approx. 60% of seizures are temporal lobe and 40% frontal.  I am frontal.  I was also told that I don’t make up that 40%.  I am a small % within that 40%.  For me, having surgery and then still having to take two meds, that’s not enough for me.  Our life is affected daily because of my condition.  My husband takes on so much.  My daughter is affected in ways that are trivial or may seem trivial to some yet as a mother they bother me.  If you ask either of them any day of the week they will tell you they aren’t bothered at all.  For me it’s not a decision that is mine alone.  My seizures are not controlled.  I have them often in the evening and throughout the night.  I have a history of daytime so that is the reason for no driving.  Over the last few months I’ve started twitching frequently during the day.  I just deal.  I am crazy affected by stress and sleep – my UD friends can attest to that.  I just always know it could be worse.  Honestly, I have come to some kind of acceptance with epilepsy.  Doesn’t mean I don’t have my days.  I know I am not the person I used to be.  I’ve changed.  I can’t really explain how or really what I mean.  My meds affect me, 17 anticonvulsants pills a day plus two vitamins.  In the end, I work through it and so do my husband and daughter.  Family and friends support us so right now we are good.  

July 2013  (random thoughts)

I feel so fortunate.  How was I blessed to have late on-set epilepsy and not have to deal with what others in the epilepsy community have had to? I’ve had epilepsy for 10 years.  I have wonderful support from family and friends.  I have never experienced any type of bullying.  When I worked I was never uncomfortable.  As a matter of fact my boss was amazing about it.  She knew that I was self-conscious and at that time I had seizures ALL the time.  She was very subtle about it yet always made sure I was ok.  Never pointed it out, never babied and certainly never laughed.  I fell in the parking lot one day and she saw me and casually walked over.  Another lady ran and was all – oh my god are you ok?  My boss grabbed my hand and helped me up and said “everything good?”  On we went. The beauty of late on-set,  I could have and would tell someone to fuck off if they made fun of me.  When your child, not so easy.

My family, my family of friends, my dance family – they do so much and put up with a lot.  My ever-changing personality, my brown aura and sarcasm that can sometimes come across as questionable.  I was never aware of the epilepsy community until I started my blog.  

July 5, 2013

We left UVA in October of 2012 with no real conclusions, things were still to be determined.  I felt like surgery was questionable, I always have.  A gut feeling I guess.  I don’t want to be a candidate but there is a part of me that doesn’t want to be told that its out of the question.  Too final I think.  Over the course of the ten years that I have had epilepsy, I have been told that my case is a touch tricky.  I have frontal lobe epilepsy which is the 2nd most common type.  Understand that percentages vary or change but I have been told, in a way to help me understand, that roughly 60% of people with epilepsy have temporal lobe and 40% have frontal.  The type of seizures us epileptics have are different of course.  My Dr. at UVA said that even though I am in the 40%, I am a small portion within that 40%.  I have an obvious lesion but it is in a hard spot.  It’s crazy how all these tests come together to help determine surgery success.  It’s interesting to hear Dr’s explain how one test can combine with another and then another.  All in the hope of determining where the seizures fire from.  My next test was schedules for December – neurocognitive assessment test.  So I had approx. 2 months before my return to UVA.  In the meantime I had the new medication Vimpat to get started on.  I believe I mentioned my experience with Vimpat at another point in my blog but I don’t remember when or where.  This is not an un-common occurrence for me.  The gist, I didn’t last very long on it.  I became ugly, frustrated, annoyed, emotional and just plain awful to be around.  In the matter of about three weeks I was a mess.  The final straw came when I freaked out on Bailey, T and Ms. H at the gym one day.  I was a totally different person and we had to leave.  My head was spinning and it felt like I was watching myself outside of my own body.  I was shaking and twitching all over the place.  That was the last I could take of that medication.  I called my Dr. and said I didn’t think Vimpat was for me.  They instructed me to drop the medication immediately.  Apparently the side effects I was experiencing fall under the “drop this medication if you feel….” category.  It was crazy how quickly my emotions turned around.  That medication was awful, I had never felt so out of control.  Thankfully that was resolved quickly and I could focus on my next step in the whole surgery process.  I was set to have the neurocognitive assessment test the beginning of December.  I was given an idea of what to expect with the test so that was what I prepared for.  In the end I wasn’t prepared.  I had no idea the test was going to be like it was.  It was much harder than I thought, I don’t just mean from a knowledge standpoint either.  I had no idea I would feel the way I did during the test or how I would feel after.  It was nothing like I thought it would be.

June 10, 2013

My husband and I headed back up to UVA for two more tests and a follow-up appointment in October of 2012.  I was going to have an MRI and PET scan done.  You all know what an MRI is, a lot of people have them done.  A PET scan starts with a radioactive substance being injected into your arm.  You then have to sit in a quiet, dim room for about 30 minutes to an hour.  Then they do the scan.  The scan machine that is used looks like a big donut.  It’s not a tunnel like the MRI.  After both of the tests were done we met with my Dr.  They had reviewed the EEG and video monitoring tests but hadn’t come to any final conclusions.  Especially with the uncertainty of my freak out morning seizure that didn’t get recorded.  At my Oct. appointment we were told that they may do a 10 day to two-week monitoring test but they wanted to review the MRI and PET scan results first.  Additionally, they wanted me to have a neurocognitive assessment done.  Then the Dr. reminded us that the process is not quick.  There are several phases and it can take several months to get through all the necessary steps.  Quite frankly I was and am ok with that.  We are talking about brain surgery.  I really don’t want any guessing, I need to hear words like – certain, absolutely, accurate, etc.  I was willing to take these initial tests and see where they were leading us, was each test going to prove me to be a good candidate or was I going to remain so-so.  I left the Dr.’s office knowing another test was going to be scheduled.  I also left the appointment with a new prescription – vimpat.  Another medication to go along with trileptal, dilantin and keppra.  Would we all get along?  Oh, we shall see

May 7, 2013

I left UVA the last week of Aug, 2012.  I have already mentioned that my family and several of my friends were shocked by my drastic weight loss.  During the week I was gone, I lost 12 pds, my color was bad and I looked sick.  There is a whole additional side to my weight loss and I will leave that in the weight loss section.  When I got home I was exhausted!  My medication had been adjusted so drastically while I was having testing done that my system needed a bit of a recovery.  In addition, my keppra dosage had been increased.  Another 750 mg was added.  I was an emotional train wreck for a few days.  My family and friends were so patient thank goodness!  I bounced back fairly quickly though and was back on track and was my normal sarcastic jackhole self.  I went back to my local Dr., Dr. B and we talked a little about the tests.  Results weren’t back but he seemed anxious to get my take on things.  He was letting the UVA Dr.’s take the lead on medication dosages.  He has always had issues with me taking so much medication.  He’s tried scaling them back and when he does night-time seizures increase and day time seizures comeback like wildfire.  Intractable epilepsy has been his diagnosis from day one.  He doesn’t believe I will ever have seizure control on medication and he worries about the amount of medication and the side effects.  He says I function great for a person on the amount of medication that I am.  He’s mentioned surgery for years.  He has discussed all options, he has tried.  I’ve been his patient for quite a while now, we are about the same age, he told me about his engagement and the transitions he had from being single to married.  I often think it must be hard for a Dr. to try to help someone and feel like you can’t do more.  Once the UVA process started, at Dr. B’s insistence, I had many fears.  What if they decided I was a candidate.  I don’t want to have surgery, I never have.  What if they said there was no way it could be done.  To my surprise, I found I was very worried about being told that too.  Making a decision scares the hell out of me but not having the option at all – for some reason that scares me too!  I had to wait until mid October to see my UVA Dr.’s.  Though it was really just a little over a month, it seemed like a pretty long wait.


April 29, 2013

My Breakfast was brought in and I couldn’t eat a thing.  I was so upset just thinking about the possibility of not going home.  Whatever this episode had been it may have blown my chances of getting out!  I sat and drank coffee, the anticipation was awful.  Finally both of my Dr.’s returned.  They were extremely disappointed that my unit had not been working in the midst of my morning episode.  They had video and it lead them to believe that I most likely had a seizure but they just couldn’t be sure.  When I have night-time seizure’s they change.  I will remain consistent for some time with what I do but then all of a sudden I toss out a curve ball and they change to something else.  At the time of the UVA test I was in a laughing phase.  So both Dr.’s had discussed the options.  They were leaning towards letting me go home as planned but they were considering keeping me and reducing my medication to see what else they could record.  The problem was, they had already reduced my medication and then started it up again.  They weren’t feeling great about reducing yet another time which in-turn would most likely mean another week.  Reducing and increasing medication quickly is not their favorite thing.   So thankfully I was allowed to go home.  Testing was not over, we had just scratched the surface.  The long visit was over though and I could get home and back into a normal routine.

April 18, 2013

Trying to sleep through those early hours Saturday morning was unbearable.  Having another new person brought to my room, I was not able nor willing to deal with it.  I can sit here now and type, realizing that I was being nothing but a selfish big baby.  At the time though I had just had enough.  I wanted to go home,  I wanted to see my family, I wanted to sleep, I wanted my coffee – I was just plain tired and I just couldn’t take anything else.  I was to the point where anything outside of peace and quiet was going to push me over the edge.   Gosh it just sounds so silly now but I was fueled with so much anger and agitation that I couldn’t see past myself –  my own selfish needs.  Through the whole early morning hours I had my ear phones in, oh sweet music please relax me!!! It wasn’t working!  I know I fell asleep for short spurts but nothing substantial.  The tech staff wasn’t bothering me so that was a plus.  I was twitching and having odd episodes.  The only thing that kept me from going completely crazy was knowing that I was going home that morning/afternoon.  Eric and Elizabeth were heading up to UVA that morning and left early enough so when I was to be released they would be there.

I know I finally sat up at one point because I realized that trying to rest QUIETLY was not going to happen.  I remember turning on my TV and putting my phone & earphones on my table and thinking that I needed to go to the bathroom.  That’s all I remember.  Next thing I know I am standing at my bed with my nurse and tech nurse talking to me.  I slowly got focused and realized where I was.  I sat down and my nurse said she had called for my Dr.’s and they would be coming in.  Oh shit!!  What had I done was all I could think.  I am not going to get to go home.  As I sat there I had no idea what I had done.  I realized that I didn’t have my harness on and the pack that all my wires were connected to was missing.  It ran through my head – As long as nothing odd happened then I’d get to go home.  My Dr.’s said that to me Friday morning.  If nothing odd happened, I’d get to go home Saturday.  One of my Dr.’s came in and had an odd look on his face.  Basically what happened is I freaked out.  My Dr. asked me a bunch of questions.  My unit had stopped working in the middle of the night – no brain activity recorded which meant the little freak out episode that had happened was not recorded.  They had video but no brain monitoring.   Apparently I stood up and froze for a moment and then started ripping the equipment off.  Out of the walls, off of me and then went to the bathroom and came back to my bed.  Fortunately I had not tried ripping the wires off my head.  I was mortified!  I felt so bad yet I didn’t really even know what I had done.  The nurses and my Dr. were so nice about it.  They assured me that in my week there I hadn’t done anything out of the ordinary.  I could only tell them that I remembered standing up and sitting down.  My Dr. said he had to talk with my other Dr. and they would be back to speak with me.  Had I blown it?  That’s what I asked him.  He looked at me with such a kind face and said he truly hoped not but the decision was not up to him.  If they believed it was a type of seizure, then I may have to stay.   I was so upset.  I called Eric and told him that I had some freak out episode and I was so afraid they were going to keep me.

April 4, 2013

Friday I woke with a headache.  I have always called them my pill headaches but my Dr.’s told me that they are probably from having an active seizure night.  They aren’t bad and don’t last long.  It seems I get them more when I have cluster seizures.  Mornings that I wake up with one, they are gone by the time I am downstairs making coffee – thank goodness!  Anyway, I was ridiculously hoping I’d get to go home that day but I was told no.  Dr.’s said they needed to put me back on my regular med amounts and wanted to monitor me for 24 hours.  I could plan on a Saturday departure.  Well, unless something odd were to happen.  My neighbor left before breakfast and I was most likely going to be alone most of the day.  Good thing to cause I was ugly.  At that point I mean ugly in various ways.  I had not washed my hair in five days, it hadn’t been brushed and I had wires glued to my head.  I was cleaning up with warm wipes.  Now I have to say those weren’t too bad.  A nice big warm wash cloth type wipe.  A package of them.  Going to the bathroom area and cleaning up while still attached to wires that were attached to a monitoring pack that was wrapped around my back and chest like a harness that had a long cord that reached from the bathroom all the way to the outlet over my bed, that was a touch difficult.  BUT I was still able to rein it in and be polite when nurse’s were in and out.  When I was alone I was basically stewing.  I couldn’t focus enough to read, or play word games.  I talked with my family and waited for breakfast.  I had the TV to entertain me.  When breakfast came I didn’t eat much, so surprising.  I drank coffee and watched TV.  I was so bored, so tired that I ended up putting my ear phones in and listened to music.  About two hours later I was being served lunch.  I had slept the morning away.  After lunch not much different happened.  I was so annoyed, so bored and getting so agitated that I put the ear phones back in and went to sleep.  I slept and slept but it seemed like the day just wouldn’t move.  Finally dinner came and I all could think about was 7:00.  Ghost Adventures would be on and I would have a couple of hours of my Ghostly show and then Dead Files would hopefully follow.  Thank god for 7pm!  I had an active night.  I was uncomfortable and just kept feeling the tingling going through my limbs.  Middle of the night came and guess what?  F’n noise!!!  Loud, loud, loud!!!  New person!!!!!  I can still remember that feeling of anger I felt then.  I knew I wasn’t gonna get any sleep.  So I just didn’t give a crap, ear phones went in.  The tech staff could just come deal with me if I had a seizure and didn’t respond to their questions.  Couldn’t sleep with all the freakin noise so at least I could hear Josh Groban sing in between disturbances.

Saturday morning departure, unless something odd happened.  Hmmm, leave it to me to do the something odd!


March 18, 2013

Thursday evening of my stay, I was holding on by a thread.  Dinner had been brought in and I didn’t even bother taking the lid off my plate.  I knew I wasn’t going to eat whatever it was.   Rolls and yogurt or pudding, that’s what I was eating.  Yummy!!  I spoke to my family shortly after dinner and said good night, just as I had been doing all week.  The rest of my evening was going to be bad TV and waiting for my medication.  My Dr.’s ended up coming in but only because they had come in to let my neighbor know that she was going to get to go home Friday morning.  Lucky her!  I just wanted my nurse to hurry up with my meds so I could go to sleep!  I was really feeling some tension, I wanted this test over and wanted to go home.  My neighbor was going to get to leave in the morning which was good and bad.  Good cause I would have the room to myself but bad because I still had to be there!  Two people had come and gone and there I was.  Feeling a bit sorry for myself?  Sure was.  I needed to clear my head and relax, time for music.  Thank god my husband had loaded up my phone with my favorite tunes.  Ear phones in and music on – time for Josh Groban’s voice to bring the calm.  It worked as always.  By the time my nurse came in with night-time meds I had relaxed and was ready for sleep.  She left but said she’d be back to check on me later.  Having my music on was fabulous.  It covered all the noise in the hospital that went on during the night.  All I could hear was Mr. Groban singing.  Positive, yes, but that also meant I couldn’t hear the monitoring tech calling out to me upon my first seizure of the night.  Great, here they all came!!!

First seizure of the night and it came well before midnight – ugh a long night ahead!!  No more music after that first seizure due to my lack of response.  I was forced to deal with the hospital noise, my frustrations and my lovely cluster seizures!  Great!  Clusters are my favorite, exhausting!


March 11, 2013

Wednesday night during my stay proved successful!  Many seizure’s were documented which was thrilling for my Dr.’s.  Fabulous yet annoying for me!  I had not expected to be questioned by the monitoring tech., calling to me on the speaker by my bed literally seconds after a seizure.  Really?  I am asleep for one thing – seldom do I totally wake-up after a night-time seizure.  Late evening, maybe.  Sleeping seizures – No!  My medication does a pretty good job of knocking me out.  I usually wake my husband up.  I don’t know I’ve had one unless he tells me or I annoy Ms. Milly enough that she barks at me. Plus, I was sleeping away from home – of course I was gonna be disoriented if I woke in the middle of the night and not know what to say.  I’ve been at my parent’s house and woke up not knowing where I am.  So having some women calling out to me asking me if I am ok, do I know my name, where I am etc.  No, I actually don’t know jackshit.  Leave me alone I am trying to sleep!  That didn’t go over well when I didn’t answer.  That resulted in several nurses rushing to my room.  I would have tried harder to answer if I had known that was gonna happen.

Thursday morning my two Dr.’s came in and they were pleased to inform me that I had given them some information.  I was excited!  Did I get to go home then?  Was it enough?  Nope!  How about Friday?  If I could give them some good seizure’s Thursday night would they let me go home Friday?  They weren’t sure.  They really wanted one more night and then they needed to put me back on my full dosage of medication.  It was looking more like Saturday.  Well that didn’t make me very happy.  WHATEVER!  That was my mood!  Not happy.  It was taking everything I had at that point to remain civil.  I was talking to my family and trying to stay in control.  I was able to chit-chat with my neighbor and joke about the food but she knew I was a bit tense.  It was Thursday and I was looking at two more full days and two nights.  I was twitching all over the place with flushes coming up my limbs and through my head.  I was completely disconnected head.  I have these weird feelings that I can’t explain.  I’ve mentioned before but it’s believed that these sensations are simple partial seizures

I was struggling to remain friendly.  I was starting to get emotional after I got off the phone with my family.  The food was gross.  My fav Nurse gave me coffee and brough me crackers because I hadn’t eaten much from Monday to Thursday.  Breakfast hadn’t been great and lunch wasn’t much better.  More joking between me and my neighbor.

After lunch I was exhausted!  How?  All I was doing was sitting in bed, watching TV, reading, listening to music and going to the bathroom.  That made me tired.  Following lunch I could hardly keep my eyes open.  It was time for music and a nap.  Exhausting!  Being asked to do something that your Dr.’s have been trying to prevent, such a strange thing.  Coming off meds is no fun either!  I was grouchy, I was starting to space out a little.  It is a weird feeling that I can’t describe.  I slept most of the afternoon, I don’t think I woke up until shortly before dinner.  Honestly it was becoming too much for me.  Wire’s on my head, a harness on my chest to my back that held the wires and its unit.  Being watched 24/7 and having people in and out all the time, I was reaching my breaking point.

March 4, 2013

I shall return to my post from 2/25.  It was Wed. morning, no seizures, a new neighbor and the code.  Ha!  Giving my husband a code.  Funny right?  So I have a new neighbor, I’m eating breakfast and watching TV.  Dr.’s have come in and feel bad about telling me that a three-day stay isn’t going to happen.  I will be there longer.  Morning phone chats with family and clearly it was evident to them that I was beginning to get a little agitated.  Breakfast was coffee and yogurt because I refused to eat anything else.  Too much noise on the other side of the curtain for me.  They were friendly people but my insides were churning.  Oh I can play nice like the best of them.  Sweet, pleasant voice and such an easy-going patient.  Ha!  That’s not what was going on inside.  My neighbor’s family left and they were very polite and said goodbye to me as well.  My neighbor was actually funny and we got a long rather well.  She was light-hearted and was cool if we talked and fine if we were quiet.  The Unit got busy that day.  The person who was admitted the same day I was had started having seizures.  They also had additional patients on the floor with other neurological conditions.  I was still in the safe zone no seizures and my neighbor had only recently had a couple of seizures so they were trying to figure out why.  We both had to ring for a nurse if we needed to go to the bathroom.  It got to the point where my neighbor and I would get out of bed at the same time and take turns.  One of us would go into the bathroom and the other would sit on the chair outside the closet area.  We figured the other could call for the nurse if one of us had a seizure.  The day went on – TV and chit-chat now and then.  I Napped a lot and did some reading.  Lunch came.  My neighbor and I laughed about the food and picked at a couple of things.  My fav nurse came in and said she was leaving for the day and I was next on the list.  The patient on the other side of the wall had started having seizures and it was my turn.  I was next in rotation.  Does it sound weird that I’m being encouraged to rock out some episodes?  I hope not!  For my Dr.’s and nurses, it’s not funny to them.  It’s necessary.  Nothing about what goes on with us epileptics is viewed as funny in the medical field.  When it comes to all this testing, they know we just want all the shit over.  My Dr.’s are busting their asses to try to stop my seizures and then they need me to have them.  It’s miserable and they know it.  They wanted me to get this done because they knew I wanted to get the hell out of the hospital and go home.  My Dr.’s have been nothing but understanding, sympathetic and considerate.  Asking an epileptic to have seizures when the whole point is to stop them – it’s not really funny for anyone involved!

Dinner came and went and my neighbor and I began to make complete comedy over the food.  We both got quiet shortly after dinner.  I like to watch Ghost Hunter’s on Wed. nights so I had that on.  My evening nurse came in around 10pm with my medication and shortly after I started slipping into my evening trance.  I didn’t let the staff down, I was next in rotation for seizures and I came through like a champ!!

Feb. 26, 2013

I am annoyed, frustrated and just plain tired.  Is my epilepsy ever an excuse for my behavior?  Nope!!  Do I act like an ass somedays?! YES I DO!  Am I happy about it? Do I think I am funny? Nope!!  Somedays I think this blog has been a great idea and somedays I am disgusted with myself and regret saying the things I have.  Somedays I want to shut it down but I am too dumb to figure out how.  Why do I keep a guard up, have the poker face and the brown ora?  Because I don’t want to deal with my socially unacceptable behavior.  Am I joking – no!  My brain is impaired.  A three and a half hour test for Dr.’s to tell me that.  I think its funny!  I think its funny that my left side can’t keep up with my right.  I think it’s funny that my executive functions no longer function on an average level.  I think I am hilarious because I can’t work through one process to another.  For two weeks I have tried to think of things to type daily and I have nothing!  I don’t feel like working out, I don’t feel like doing anything but sleeping.  Not because I am depressed but because I don’t give a shit!  When my husband and daughter are gone my time goes on hold til they get home.  I plan to do stuff but I don’t.  I just want them both to get back home.  Let me see, what more can I pour out in this post and sound more like a big baby!  Believe me I am quite aware that my issues are nothing!  I could be so much worse off and I say it everyday.  So much so that I have friends telling me that its ok to not be fine.  I enjoy every night when I am trying to sit in bed and chat with my husband but then I don’t make sense.  My face hurts, my teeth go numb and my lips burn.  Who the f@#$ knows why but according to my Dr’s I am functioning just find on meds.  Why?  Because I can walk.  That means I am fine.  I am toxic as hell but I am doing great!  I always have the option of having Dr. B tranquillize me, he’s indicated he can certainly make the seizures stop if I am not opposed to being comatose.  One moment I am happy as a lark and the next I am asking T to kick my ass during a workout cause I am so f’n pissed off.  The double vision, dizziness, sleepiness, it passes enough that I can move right?  Sure I can move, I just look like a stumbling drunk.  Enjoy this post guys, my rants don’t happen often, I prefer internalizing my frustrations.  It’s much healthier you know.  I constantly say I am fine, I am fine.  Maybe that’s my problem!  Maybe I should  constantly admit every freakin emotion I have at every second.  You know what, I am not f*&%ing fine and I haven’t been for two weeks.  Thanks Dilantin -we mesh so well!

Feb. 25, 2013

Nothing!  No seizure’s Tuesday or on into early morning Wednesday.  Ugh, I was hoping.  I hadn’t slept well Monday, did nothing all day Tuesday – which strangely made me tired.  I was so optimistic! I was hoping to be one of the people who could rock this thing out in three days.  After being told Wednesday morning that I had done nothing throughout the night, I knew a three-day stay was probably not going to happen.  Dr.’s came in as I was sipping my morning coffee and told me they were pulling back another pill from my evening meds.  They supported me with my hopes of getting this thing done quickly but they also reminded me that they needed certain info and I would be there til they got it.  Aye!!  Thankfully, I had already been supplied with my morning coffee.  I had a few minutes to take things in and then morning breakfast arrived.  Something came with it.  Yep, a new neighbor!  Really?!  Some grouch pot was settling in with me.  I hadn’t had enough coffee and the realization of being there longer than I had hoped was pissing me off.  I was selfish, yep, very much aware but I admit I didn’t care!

This is trivial but true.  Emotions are not revealed often, I am extremely good at hiding.  I’ve said that Eric is one of the few who see’s, my family at times and a couple of friends.  So, while at UVA there were moments during my days that the reality of where I was would really hit me.  I was three hours away from home.  I was away from my daughter and husband.  My parents were with Eric and Elizabeth helping out and I was not there.  It was fine really and my husband was constantly encouraging me to take advantage of the rest.  I did and was fine for the most part.  When I was settled into my room that first evening I had been given a form with a code.  A code to be given to a family member so the staff could speak with that person.  I set it aside along with the folder of other info they gave me.  What the hell would anyone need a code for?  Then I thought about this code.  It was me giving consent to the staff, allowing them to talk to a family member – code be providing.  No biggie I thought.  So I asked my fav nurse.  She basically told me that if family called and I was napping and they just wanted to make sure all was well, they needed the code.  OR in the event that I couldn’t speak, went unconscious, the staff could only speak with family who had the code.  Oh my, that hadn’t occurred to me.  I had to give Eric a code and he needed to provide it to the staff if he called the Neurology floor.   When I was admitted I told them my emergency contact, Eric of course.  He would have been called had something happened.  It never occurred to me that someone might need to speak for me and only if you had the code!  I hadn’t been without anticonvulsants for 10 years.  I was being taken off dosages and quickly.   What if I started seizing all day and all night like I used too?  Holy shit!  I was alone.  No one was coming to visit, wasn’t like someone would pop in eventually.  It was fine, I wasn’t really concerned but a little too much free time and the mind can take us other places.  I did text the code to my husband.

Feb. 17, 2013

It was Tuesday and I was alone!  My awesome nurse was back and she was keeping me set up with coffee and a cold drink.  I relaxed, watched TV, read – that’s about it.  Kept in touch with my husband and my daughter would face time me periodically.  Lunch came and it was ok – turkey sandwich.  I ate half and ate the yogurt.  I guess my appetite was gone in addition to the food being not great.  I was gone from my familiar surroundings, away from my husband and daughter.  We are hardly ever apart.  I was fine really but my security of being with them, just near them was gone.  That was the first day that meds. were reduced.  I was feeling some flushing sensations at times which my nurse said were probably some simple partial seizures.  She said they don’t usually record so there was really no way to know.

No wonder seizures reduce in that environment – there is nothing to do but sleep and relax!!!  Dinner came and I don’t remember what it was but I know I didn’t eat it.  Basically my meals were coffee, a roll and either yogurt or pudding.  I was so tired because of all I had done that day, ha!!  I was ready for sleep but my night-time nurse would be coming in to give evening meds so I waited for her.  I don’t enjoy being woken up so I waited.  An hour or two later I was off to sleep.   Yes, I was hoping for seizures!! My first full day was un-eventful, I was hoping for the opposite while I slept.

Feb. 12, 2013

I’ve mentioned that lack of sleep is not good for us epileptics, hell no one likes it!  With exception of my fav nurse being back and her understanding my need for coffee, the morning was rough.  She did tell me that my neighbor was being moved.  Lord was I happy!!  I didn’t want to hear her cry anymore.  Rude of me?  YES, I know but cut me some slack.  She clearly wasn’t feeling great and I am pretty sure she didn’t want to be around for my active “moments”.  Two of my Dr.’s came in to let me know what the plan was going to be.  Dr. G and Dr. B (not local Dr. B) explained to me that they were going to take some of my meds away to encourage seizures.  Dr. G said that often times seizure activity drops when epileptics are put in the hospital environment.  Stress levels drop, there is nothing to do but rest and relax.  Even though I had a sleepless night, they needed to ensure that I was active the next several days.  One seizure wasn’t enough, they needed multiple.   Not usually a problem for me but they had to be sure.  Can’t tell you what they cut or how much, I honestly wasn’t paying attention.

My neighbor was moved out before breakfast even came, I was happy.  I was alone and it was peaceful.  I talked with my husband and my daughter.  They were both fine.  Elizabeth was with our next door neighbor again and my parents were on the way to our house to help Eric.  My Breakfast came – hmmm, not so good.  I ate the yogurt and of course coffee.  I was given a nice thermos cup with ice and could have water or lemonade all day.  My first full day was beginning.

Feb 7, 2013

By the time I was registered, wires hooked up and baseline EEG complete, it was late afternoon early evening when I was set up in my room.  When my first meal arrived, I just wasn’t sure what to think.  It smelled ok but I wasn’t certain what it was supposed to be.  It was turkey with some gravy.  It was a very pressed slice of turkey.  I decided to stick with the green beans – not bad, yogurt and a roll – coffee to drink.  First hospital meal was complete.  After that I just sat there in my bed.  Watched some TV and sat.  I would get so tired and want to sleep but the sun hadn’t even set.  Funny how you can get so tired from sitting.  They told me what time they would be giving me my evening meds so I figured I could stay up til then.  Once she came in and we did the routine – give my name and date of birth – I got my meds. and was ready to sleep.  Ready to roll the first night, hoping to knock out some seizures.  Epileptics don’t wish for seizures but I was.  I wanted to get this test over and get home.  Something happened that night but not seizures!!  Now let me just remind you that I am laid back, like to joke around, friendly, nice – all that.  I am also highly affected by med adjustments, stress and sleep.  I was away from my family and that didn’t make me happy either.

I was sleeping peacefully and then crap there was all kinds of noise.  What the hell!!  I sat straight up in my bed cause it sounded like the roof was coming down.  I was trying to remember where the hell I was and process what was going on.  Then I had some women yelling at me wanting to know if I was ok and could I tell her where I was.  Umm, no!!  But can you tell me if I need to run or something.  The building was not falling down, it was a patient being brought in to my room and the ER people were so freakin loud.  The women yelling at me was the monitoring tech checking to see if I was coherent, she needed to know if I was having a seizure.  Well I appreciated her concern but who in the hell could have slept through that?  Scared the crap out of me!   I mean, my meds knock me out pretty good but come on!!  The rest of the night was not good.  Lady next door was making too much noise, talking to someone and crying.  I have sympathy people I really do.  I was also three hours away from home, had wires stuck to my head and knew I had several fun-filled days ahead of me.  There was a little edge.  I did finally fall asleep but woke again with a splitting headache.  So bad I had to call the nurse.  She brought me Tylenol and it got better.  When I finally woke for the morning my fav nurse was back with a cup of coffee.  She knew that the noise had been too much, I didn’t get enough sleep and I was going to be looking forward to my coffee!!

Feb. 3, 2013

They do a base line EEG before all is started.  So all the electrodes are placed on my head but this time it is so much easier than the first time.  Of course things have gotten better in the last 8 years.  For those of you who don’t know – us epileptics LOVE it when lights are flashed before our eyes.  Especially when they are really fast and for me, when they are red.  That’s a quick way to see how the brain reacts.  Watching movies, there are times I have had to close and cover my eyes to block out any flashing.  When our TV downstairs was going bad it started to take on a red tone.  I couldn’t stand it!!  It worked out for my husband though, he got to go buy a new TV.  Anyway, the flashing happens and it is over.  It’s not painful but its a huge annoyance.  Frustration can easily set in for me – not a good thing.  Frustration, stress, lack of sleep – oh I can turn on a dime!

I am set up on the neuro floor for monitoring.  I didn’t have a private room- great cause I am not always one for chit-chat – definitely not when I am annoyed.  I was alone the first day so it was cool.  I am all set in my pj’s for 5-7 days of laying on my butt.  That’s right, no exercise and forced to eat what they serve for meals.  TV’s on, books, magazines, I was ok.  I had an awesome nurse – she was the best!!  Now because most epileptics don’t know when a seizure will come on, u have to call the nurse if you need to get out of bed for any reason.  First day was fine, the neuro floor was not full and there were only two epilepsy patients being monitored, me being one of them.  My cool nurse comes in often to check on me and she chats with me a little.  Totally fine cause she had other things to do so she didn’t hang long.  She does this everyday so she knows how much is too much.  She picks up real quick that I am a huge coffee drinker and she sets me up.  Thank god cause let me tell you after the lab lady came in and jabbed my FOREARM to set up an IV – I needed it!!!  OUCH!!  I couldn’t have done without that afternoon cup of coffee after that!!!

It’s dinner time and my fav nurse comes in to tell me she is going home for the night but will be back the next morning.  My new nurse is cool too but my first nurse is still the fav.  This is how I spent some of my time, rating the staff – I never did nor have I to date met anyone at UVA who was/is unpleasant.

Jan 28, 2013

So My appointment with the head of neurology at University of Virginia was made – end of July 2012.  Our neighbor keeps Elizabeth for us for the day so Eric can drive me to my appointment.  I wasn’t excited but I wasn’t dreading it.  I was trying to look at it as a way to gain more information.  Dr. B wanted more info and because of the location of my lesion he wanted me to go to UVA.  Dr. B felt UVA had more experience and that was where he sent me.  It is very weird for me to be seeing all these different Dr.’s now.  I have been with Dr. B for 8 years.  I am use to him, his humor etc.  He knows me, my issues.  He knows my husband and daughter.  I don’t have to repeat stuff over and over to him.  He got married about a year ago and always shares stories of him getting used to being married.    Now I am with five to eight different Dr’s.  I have to say though, Charlottesville is so beautiful and every single person I have ever dealt with at UVA has been amazing!  Not joking – not one person has been hard to deal with.  I leave Charlottesville with an additional 750mg of keppra added to my medication routine and an in hospital test set to be scheduled asap.

The two new Dr.’s I see decide that the first thing to do is EEG/video monitoring.  This requires an in hospital stay, 5 to 7 days.  Pretty sure I don’t need to mention how happy I am about this.  Husband has to work and we have an 8-year-old.  Parents are called and plans are set.  I leave Monday 8/27 for UVA.  My parents can’t come until 8/28.  So we leave our daughter with our neighbor again – they are of course happy to help.    Eric gets me set where I need to be and he heads home for Elizabeth.  He is off to work the next day and Elizabeth is back with our neighbor until my parents arrive.  I am in Charlottesville.

Jan. 21, 2013

My Dr. finally settles on four meds to be taken on a regular basis.  Klonopin was used when I had clusters of seizures.  I wasn’t on a very high dosage of Topomax – 400mg.  Trileptal – 2400 mg, Dilantin – 500 mg, and Keppra 3750 mg.  The last 750 mg of the Keppra was very recently added.  Dosage amounts have changed but those amounts were decided upon as working the best.  I see my Dr every three months and Dilantin levels are checked every time.  If they are off then he adjusts the amount and then I am back and forth to the office having blood work done til it is regulated.  One time I was really low so he had me increase the amount.  Went back to have it checked, I blew off the range.  I was supposed to go out-of-town a couple of days later.  He would not let me leave unless the level was within range.  Toxic issue right there.  It was fine and my plans didn’t have to be altered.  This has been a consistent battle with this particular med.

My Dr. really didn’t want me on four meds so he decided to take away the Topamax and see what happened.  Nothing! No noticeable change so I was down to three.  That is where I am currently as well.  I take 1200 mg of trileptal in the morning – two tablets.  At night I take two more tablets of trileptal, 5 capsuls of dilantin and 5 tablets of keppra.  14 pills a day, 98 pills a week – if my math is correct.  Some days I am not at all affected by my medication and some days I am a train wreck.  I have mentioned the fall with Elizabeth down our steps.  Thankfully I never took her down them again.  I however have had many tumbles.  Cuts and bruises – one time to the hospital at my Dr’s request when he saw my wrist.  Burning continues to be an issue but not as bad.  Falling out of the bed is also better – haven’t done that in a while.  I almost think I have learned to manage my muscle weakness and balance.

I have many friends that help me.  Run me place to place.  I have carpool arrangements for Elizabeth for dance.  Eric does our side of the carpool.  He picks up Elizabeth and two other little girls.  He is funny, the girls love riding home with him.  He has had to take on a lot of extra things and never complains.  It’s hard for me at times because I feel so bad.  If I can’t make arrangements with a friend during the week to get to the store, then he has to stop on his way home.  It is hard to depend on so many others.  I am better  with it now but I definitely have my days that I get pissed.  The first year was awful.  I hated asking for help.

I was pissed this past weekend and got nothing done.  Now I am making up for it and feel behind.  Eric is always so good about telling me to chill but I can get pretty hard on myself once I come out of a mood.  I have had many of them lately!!!  I’ll share this and then I am done, I am getting annoyed again.  All the time I was seeing my Dr. he would periodically ask me how I felt about surgery.  I have continued to tell him that I have no interest.  He is frustrated, he has tried what he can medication wise so in July he told me he was done (with us not considering surgery).  He was referring me to a Dr. at the University of Virginia for a consultation and I was going to go.   So we did.

Jan. 16, 2013

The fall down the stairs was a difficult thing for me to overcome.  It was one thing for me to hurt myself, again not on purpose.  It was another for me to have a seizure and have it affect our daughter.   I had to be so careful.  I used the microwave a lot.  I tried to limit my use of the stove and oven when Eric was gone.  I was eating a lot of processed foods because they could be done in the microwave.  As I was eating the processed food, I was also napping when Elizabeth did.  I was so tired from medication, the ups and downs of adjusting to it.  AAANNNNDDDD I was a bit lazy.

Once the trileptal dosage was as high as my Dr. felt comfortable with, another med was added.  I was taking Topamax and trileptal twice a day and he wanted to add a third med.  He tried Lyrica, Lamictal, Neurontin – those are the names I remember, they didn’t work.  Then came Dilantin.  This one helped.  Only problem with Dilantin – the side effects drove me crazy!!!  I still have them today.  Plus, Dilantin has to be monitored through blood tests.  It has helped but I have constant issues with the level in my system.  I now take all of the Dilantin at night which helps with side effects.  Did the seizures stop?  Nope!  Keppra is added.  I was taking Keppra twice a day, now I take it all at night.  My Dr. is not happy about the amount of medication that I am on.  He asks about surgery and Eric and I are not even considering it.  At that point I was taking topamax, trileptal, dilantin and keppra.  I am not having seizures 24/7 but they are not controlled.  Additionally, when I would have them at night, I usually had them in clusters.  Because of the clusters and them happening a couple of times a week, Klonopin is added.   I was one medicated, toxic mess!!!

Feb. 12, 2013  – (re-type of original publish date – Jan. 3, 2013)

For those of you who have already been following go ahead and skip to the last entry, you have probably read most of what I have in bold print here.  I am having to re-type the beginning of this whole epilepsy thing because I apparently deleted the first part of my original post.  I may indeed say something different, who knows with me but just so you know.

So, in 2002ish I started having these weird symptoms happen.  The first was disorientation.  It would happen a lot while driving.  It was like a confusion maybe out-of-body type things – its hard to describe.  I went to my family Dr. to see what he thought.  It was so hard for me to describe to him how I felt when this things happened.  I knew they happened, I was conscious but I was totally out of it.  It came on slowly at first.  My GP Dr. tried a sleeping med thinking that maybe I wasn’t getting enough sleep.  Didn’t get better.  He tried another medication thinking maybe it was stress.  No change.  After about six months of trying a few different things he decided I needed to see a neurologist.  I went to see my first neurologist Dr. M.  in February of 2003.  He ran a few tests.  EEG’s, sleep deprived EEG”s and he decided that I had complex partial seizures.  He wasn’t very aggressive in treatment but he did say that I couldn’t drive anymore.  In Virginia you have to be seizure free for six months before you can drive.  I couldn’t go six minutes without a seizure.  Obviously an exaggeration but I had them everyday 24/7.  Dr. M put me on Topamax, a very low dosage.  It didn’t help.  He would have me try the dose and go back to see him around 6 weeks later.  No success at all.  If anything they were getting worse.  I don’t really even remember having them at night as much but it was most likely because and Eric and I were so overloaded with daytime seizures. 

We spent probably 10 months with Dr. M with Topamax adjustments and nothing was changing.  Except Eric having to take on more and basically be my babysitter.  I would trip up steps, I burned myself more times than I can count.  Grabbing the iron part of the iron one night was a favorite of his.  What I did while having seizure’s would change.  I’d spin in circles, repeat words, laugh, stare off into space.  I fell a lot.  The lady I was working for at the time of my diagnosis was so good about handling them.  She knew I didn’t like the questions and attention drawn so she just talked past it and never brought attention.  I fell in the parking lot at work one morning and she just helped me up and blew it off while another lady was going on and on.  Eric got to where he could read the signs.  I get a look on my face and he knew something was going to happen.  A scary moment was when we were in the kitchen and he was standing at the counter talking to me while I cleaned up a couple of dishes.  I turned the garbage disposal on, looked at him and he knew.  I went to shove my hand in the disposal, he grabbed my wrist before I could.  This became the norm for him.  He’d see the look and he knew.  I pretty much couldn’t do anything without him around. 

Dr. M decided it was time to try a second med.  So around the beginning of 2004 he put me on Zonegran.  We didn’t really se much change but we also didn’t get a chance to really see.  About a year after I was diagnosed with Epilepsy, we found out I was pregnant.  We were very excited!  Had to call my Dr. M ASAP.   Dr. M took me off the second medication and would no longer increase the Topamax.  I was on a very low dosage of Topamax and  I was having seizures all the time and I would get so tired some days after having them.  One evening my side hurt so bad that Eric finally took me to the ER.  I have a pretty high pain tolerance but it was more than I could handle.  They believed I had a kidney stone.  I was 10 weeks pregnant so they couldn’t do x-rays to confirm.  I would not be put back on Zonegran because kidney stones are a side effect.  Wasn’t a whole lot they could do about the kidney stone except give me some pain med since I was pregnant.   

My OB/GYN put me on a high dosage of folic acid and once I reached 26 weeks I had to go to the office once a week.  They would do an NST and Ultrasound followed by Dr. appt.  Apparently it is not uncommon for women with Epilepsy to have low amniotic fluid so it has to be monitored.  Now, since I can’t drive, my husband would have to leave work, come and get me, and we’d go to the Dr.’s office.  Depending on time of appt., he’d  either take me back to work and then he would go back to work himself or we’d go home if it was a late appt.  He drove me to work and picked me up.  So anything in between, he’d have to drive me to as well.  Because of my medical condition, I only saw my OB/GYN Dr. – I did not rotate throughout the practice like many do. In my last month I went in for one of my regular appts. and the ultrasound showed that my amniotic fluid had dropped much lower than it had already been.  I was taken out of work and sent home.  No more work until after the baby.  My husband had to take me back the next day for another ultrasound.  If the fluid was not up then I was going to have to have a c-section.  This was about three weeks before my due date.  Thankfully all was ok.

Elizabeth was born and all was well.  She was actually four days late.  She was so small, I can’t imagine how small she would have been if a c-section had been done three weeks prior.  We were so thankful that she was and is healthy.  It was at one of my follow-up appts with my OB/GYN that I realized it was time to find a new Neurologist.  My OB Dr. remembered more about my medical condition then my  Neurologist at the time did.  So we switched – finally some progress was going to be made.  I was heavy when I got pregnant but I really didn’t gain a lot of weight while pregnant.  I certainly gained more after.  Was it all the meds?  Who can say.  I certainly can’t say I was eating healthy and working out.  I was home with our baby.  I was going to the Neurologist office almost every month!  Med changes were constant!

My husband is carting me and our new baby all over town.  Her appts., my appts and he has a job to do too.  It was really hard for me to ask for help those first few years so he was constantly running back and forth.  He didn’t complain.  He was excited to be involved in Elizabeth’s appts. and he needed to be involved in my appts.  Half the crap my new Dr. asked, Dr. B,  I couldn’t answer.  He wanted to know about the seizures.  Dude, I am too busy spinning in circles and repeating words to be able to tell you what the hell is going on.  I didn’t always know what fun things I was up to,  my husband had that joy.  He had a lot of great fun with me those first years of diagnosis.  Because no meds controlled my seizures, he continuely got to enjoy the fun.  Dr. B finally found one medication that helped – trileptial.  It came with a host of joyous side effects.  Dizziness, blurred vision, fatigue – I could go on.  Most of the side effects go away after the first couple weeks but depending on how many meds and how much – some of that crap stays.  Dr. B say no driving and no working.  Too much medication, too many seizures, stress and lack of sleep make it worse.  So I am home.  Once Dr. B was able to get me to stop seizing every 5 mins. he wanted to do a couple of test.  No biggie.  My husband runs me to the MRI’s and CT’s.  Then my Dr. wants to do in hospital video monitoring.  We had a 5 month old at the time.  He had to work and I am gonna be in the hospital for at least 3 days.  Great!  My parents come up to help.  Thank God!  I go in and have the EEG wires glued to my head and forehead.  Wrapped so tight I wanted to die from a headache.  I was considered a fall risk so I had to have someone in the room with me at all times.  Great – now someone wants to talk to me when I want them to shut-up so I can go to sleep.  So I have a person who wants to chat and then a lady waiting for me to have a seizure so she can jam my arm with some radio-active crap and then run a CT.  That didn’t take long – I probably had a dozen while they were gluing wires to my head.  I was there as they said, three days.  Glad to go home and get some rest!  I’m sure there was important information gathered from that test but hell if I can tell you what it was.

We move forward with my epileptologist.   I am still with him today.  He was determined to get my seizures under control.  He kept me on Topamax and added a little to the dosage but nothing changed.  Trileptal is what he put me on when I started seeing him and, as I mentioned above, that started to help but didn’t control.  No driving, no working.  I was home with my daughter and my husband was doing all the running while working his full-time job.  As I have mentioned, I had hurt myself several times, not on purpose.  My husband had to always have a watchful eye.  The garbage disposal incident was a trigger for him.  This became the norm for him.  Constantly watching me to make sure I didn’t do something right before or in the middle of a seizure.  I was constantly burning myself, falling out of bed – funny I know but it freakin hurt!!  Grabbing the iron but grabbing the iron plate side not the handle.  The worst for both of us was one evening when we were all heading up to bed.  I was carrying Elizabeth up the steps and he was standing in the kitchen.  We have an open floor plan so you can see into the kitchen from upstairs.  I got to the second to last step at the top, looked at him and he knew.  I saw him move quickly right before I fell straight back down the steps with our 3 month old.  Thankfully, he was able to get to us quickly and he caught Elizabeth midair before she hit the steps or the ground.  She was fine but we both cried all the way to the hospital.  After that, all three of us went downstairs in the morning – he carried her – and we didn’t go back upstairs til he got home.




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