Update on My Seizure Ordeal

It has been almost two months since I had my seizure incident.  It has been a hard time for me, but the last week couple weeks have provided me with more optimism.

I was struggling with medications.  I do not like medications.  I only use them when I am in dire need.  I would rather suffer with a headache then take some Tylenol.  Maybe some of my aversion to medications comes from the fact that I am very sensitive to them.  I started off taking the generic for Tegretol as that was deemed safe for nursing.  I took it for a week, but I don't have any memories from that week.  I was very lethargic and felt like I was walking through Jello.  I obviously couldn't function in that state so I had the doctor prescribe me something else.  Because of this decision I had to wean Allie.  That was really hard and depressing for me.

The next medication I was given was the generic for Keppra.  As soon as I started taking Keppra I felt much better in that I came out of the haze of lethargy, but I entered the realm of anxiety, depression, a constant feeling like my blood sugar was low, weak muscles, an aversion to sugar, and panic attacks.  The panic attacks were the most debilitating.  I would be sleeping when all of a sudden I would wake up with a racing heart, completely jittery, uncoordinated and positive I was about to have a seizure.  I felt if I could just keep moving and not sleep I could avoid it.  I also had to pee every five minutes and also was having frequent bowel movements.  It would take me a couple hours before I calmed down and was somewhat able to go back to sleep.  I tried to push through for about a week and see if my body got used to the medication, but the lack of sleep was making me feel really horrible and made me even more prone to anxiety and poor sleep.

At my next neurology appointment I asked to be put on a different drug.  I did not feel like the doctor was listening to me.  She rushed me through my appointment, didn't answer my questions well, got uncomfortable when I cried, and didn't seem to care about my side-effects, and also insinuated that the side-effects were psychological and not because of the medication.   She said my EEG was normal, as well as my MRI.  I told her that I only wanted to be medicated at night because I felt I was only at risk for seizures while sleeping since both of my incidents first occurred at night.  She gave me the impression that she might recommend being medicated for the rest of my life.  She gave me a new prescription for Zonisimide which I would only take once, right before bed.  I'm pretty sure she told me she wanted to start me at 25mg, but the prescription ended up being for 50mg capsules.

I took the Zonsimide capsule right before bed and woke up at 5am having another panic attack, by this time I had somewhat gotten used to Keppra and hadn't had one for a week.  I was also throwing up and having tons of bowel movements.    I was a complete mess the next day.  Crying, distraught, super jittery.  I also experienced my only panic attack during the day.  We spent the night at my parents, but I was absolutely terrified of falling asleep.  I look on the internet and find that Zonisimide has a half life of 2-3 days, so this was not a medicine designed for just medicating me while I was sleeping.  I called the doctor and the nurse was unhelpful besides telling me not to take it again, but to stay on Keppra.

I went to see a family doctor to get someone to listen to me, and she was wonderful and caring, but really couldn't do much as treatment goes.  But she listened to my theories about my blood sugar being low.  She recommended getting a glucometer and testing my blood sugar.  My tests show that despite feeling like my blood sugar is super low, it was normal.  I did discover that if I ate every 2 hours I felt ok, so I guess I could handle the medicine better on a full stomach.   I also discovered that if I woke up and ate an apple in the middle of the night I slept a bit better.   I continued taking Keppra and was too scared to try anything new.  It took about a week before I felt like the Zonisimide was out of my system.  But then I had two panic attacks in one night, and another one a couple days later. I was constantly feeling fearful.  I had waves of depression.  I felt like I couldn't make it.  Make it to what I'm not sure, but my quality of life was very low.  Outwardly I think I was still ok.  I snapped and yelled at the girls often, and cried frequently, but I didn't look as completely out-of-control as I felt.  I had lost nursing Allie.  I lost feeling happy and energetic.  I lost the ability to drive.  I lost the ability to run (too dizzy and weak). I lost the great running shape I was in (the best I had been in since having kids).  I lost the ability to sleep.  I lost my patience with my children.  I lost the ability to eat ice cream.  I didn't want to be left alone with the kids at night because I was scared, which meant I either had to spend the night at my parents when Floyd went to play poker or I had to ask Floyd to stay home.  Usually I am a person who researches everything, but every time I started researching epilepsy I got freaked out.  I was scared all the time. It sucked.

So I called the neurologist and had her refer me to the Swedish Epilepsy center in Seattle.  They couldn't get me in for 2 1/2 weeks, but I wasn't sure if I could last that long.  I called repeatedly and finally got an earlier appointment.  The doctor was fabulous.  The appointment was over an hour long.  He went over every detail.   He explained stuff to me.  He didn't get uncomfortable when I cried.  He gave me a hug when I left.  He wasn't opposed to me not being medicated.  He was interested in my sleep problems.  I have always had weird sleep walking/hallucination episodes and apparently these may have been small seizures all along.  Alternatively the major seizures I had could have actually been weird a sleep disorder and not epileptic seizures (although this isn't really likely).  Or the sleep disorder is totally separate from the seizures, but these are things we are going to investigate.

He gave me a prescription for Klonopin to take while I wean off Keppra and onto Lyrica.  Klonopin has been wonderful.  All the anxiety, depression, fear has disappeared.  I have never slept so well.  The sleep hallucinations have gone too.  Even the feelings of low blood sugar have diminished though I still can't eat sugar.  I'm not sure if its because of the medications, or because it had been over a month since I had any.  I have been able to run a little bit.  So hopefully once I get on the new medication and discontinue the Klonopin I will continue to be good.

I have a sleep EEG scheduled in a few weeks and another appointment with the neurologist.  I just can't say how comforting it is to have a doctor who listens and cares.  After having my midwife with Allie I realized the level of care that is possible to receive, and I am no longer willing to receive substandard care--it just costs way too much money and I deserve better.

So we'll see where I go from here, but at the moment I feel pretty good.