Weaning Off Epiliepsy Medications

It has been a year since I got the flu and had a few seizures.  The last year had been pretty crappy as far as how I was feeling.  My last update I had started taking Lyrica and Klonopin and was feeling better.  But better is all relative.  I still had waves of anxiety, was very moody, had lots of self-deprecating feelings, would sleep a ton if allowed, and had a headache about 75 percent of the time.  I tried switching to Lamictal but the headaches just got worse, so I stayed on Lyrica but took a teeny bit of Lamictal because it seemed to help curb the anxiety.  My dosages were so low though that the neurologist said he doubted they were doing anything and we should try going off the medications.  I tried weaning very very slowly, droping a dose every other day, but after a week the lower dosage cause me anxiety and made me twitchy, which freaked me out.  I went back to what I was taking.

Floyd wanted me to go off the meds, but I was very scared to, and when he said so, it would make me mad.  Like he wasn't validating my fears.  He said the meds were messing with me.  I agreed with him logically, but there was a huge disconnect between my emotions and my thoughts.  Finally after a huge emotional meltdown on my part, we talked, and he managed to convince me that all my problems were caused by the medications and if I would get off them I wouldn't be so crazy.

So I tried weaning again.  This time I decided I wouldn't try to go slowly, but I would do it relatively quickly and get it over with.  You can't wean completely cold turkey because weaning can cause rebound seizures.  I know you are supposed to consult with your doctor for a plan, but I didn't, because I wasn't in my right mind, and I didn't want him to sway me.  So I first stopped taking Lamictal.  I cut the pill in half for 5 days, and then stopped taking it all together.  A week later I decided to drop the Klonopin, because hypothetically I didn't need it, because supposedly my initial anxiety was caused by Keppra and now I shouldn't have any.  Though obviously this wasn't true because I still had some--which supposedly meant I developed an anxiety order from the seizure incident.  Anyways I took a quarter of the pill for five days and then stopped it.

I added tons of fish oil supplements as well as 750mg of magnesium supplements and B-complex vitamins to try to help with the anxiety that ensued.  I also was running a ton.  Thirty minutes into a run my head would start to clear and I kind of felt normal.  I also started taking a L-tryptophan supplement at night.  I have sleep walking/hallucination episodes that could possibly be partial seizures, or may just be a sleep disorder.  I'm not really sure, but they do seem to trigger the panic attacks I was having.  I took some tryptophan and that squelched the sleep walking.  I still had some insomnia due to stopping the Klonopin, but the tryptophan definitely helped.

Three days after stopping the Klonopin I dropped my morning dosage of Lyrica.  That first day I felt really, really, good. I was very happy and my mind was clear and it was amazing.  I felt totally vindicated that the medicines were making me crazy.  However the next day I was out with friends for dinner and my body got all tingly and my heart started racing and I didn't feel good at all.  I don't know if it was a panic attack, or what.  But it was definitely some weird withdrawal reaction.  I came home and took .25mg of Klonopin again (no tryptophan), but I kept with the weaning process of Lyrica and took only the evening dose for 3 days and then  stopped all Lyrica.  The next day I took .125mg of Klonopin and the next day no Klonopin, no nothing.  The next three days sucked.  I felt faint and jittery.  I had problems focusing.  I felt like I was going to jump out of my skin.  I was very twitchy.  I had muscle cramps, and my fingers would fall asleep and get weird cramps.  Running helped.  One night I couldn't handle it and I just went out and did sprints around the neighborhood and it definitely helped me calm down.

But every day my emotional health improved.   After the one day where I had felt so good I had started to doubt myself again.  I thought I imagined feeling good, and that it was just a coincidence, and that I really was crazy and it wouldn't matter if I got off the medications or not.  But then I started getting my mind back. And the disconnect between my emotions and my thinking disappeared.  I was crazy, but it wasn't my fault. It was the medicine, and I wasn't crazy anymore.

I also realized how much I was being affected.  For a year I often felt resentful towards Floyd and the girls.  I snapped and yelled at the kids almost daily.  It was hard for me because I felt like an awful mom and a bad wife, but that didn't fit my self-image.  But the way I acted and the way I felt didn't fit with my self-image either.  I WAS resentful and angry so therefore I must be a bad mom.  It was a vicious cycle.

It took about one week being med free to feel pretty normal, and two weeks to feel great.  A cold and a painful stye didn't help the process.  The twitching and muscle cramps have pretty much stopped.  I think they were mostly withdrawal symptoms.   I have had way more patience with the girls.  My feelings of resentment, anger, self-pity, and low self-esteem that have haunted me for the last year are gone. :)   I stopped taking the L-tryptophan at night about three weeks after and I have had two sleep-walking episodes since with one causing me a bit of anxiety/panic.  I'm hoping that it is still just a bit of withdrawal.  Eating right before I go to bed seems to help.  It's been 6 weeks and so far no seizures.  :)  I am praying that the incident a year ago was a fluke due to the flu, because there is no way I can handle being on medications for the rest of my life.

The one real bummer is that my headache has not gone away.  I've been trying to work out some possible causes including, my contact lens prescription was way too strong (I think pregnancy and nursing made my eyes wonky because my prescription went back to what it was before I had kids) and I started eating sugar again.  I had initially stopped because I was mistaking the anxiety as low blood-sugar, and then I kept on not eating it because ironically I thought it was making my headaches worse.   But I really do think sugar is detrimental to ones health, so I'd rather not eat it--but ice cream is so good, and I haven't had as much of a headache this last week.  I don't know.  I'm still experimenting.

Looking at the Bright Side

So there hasn't been much good from this mess, but there has been a bit.  For instance:

-  My family has been super helpful and babysitting the girls more often.  I've gotten more kid free hours and even some kid free nights, which has been wonderful.  Floyd and I probably have gone out on more dates in the last month than we had in the last year.

- While psychologically I'm really missing ice cream, I did kind of wanted to quit eating sugar as it is pretty stressful for your body to deal with all the blood sugar swings, and it is damaging to your immune system.  Well whether I wanted to or not I've pretty much quit sugar.  I had considerably reduced the amount I ate, but now I'm pretty much not eating any sweeteners (I do eat a lot of fruit though).  Some days I might have a bite or two of a cookie or ice cream, but any more than that makes me feel horrible.

- I have learned to ride the bus.  However I must say trying to take two small children on public transportation is not that easy.

- I've been walking more places.  While I try to walk instead of drive anyways, now I've been forced to.

- Though weaning was sad, it has allowed Allie to spend the night at her Nana's without me feeling like I am going to explode from milk overload.

- I got really cool pictures of my brain.  Kind of gross but cool at the same time.

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.

Encephalitis - Seizures Again 15 years later

In September of 1995 I woke up in the middle of the night with the thought that I was being possessed by a demon and should be on the X-Files.  I was having a grand mal seizure.  After it was over I managed to drag myself across the house and get my parents up.  I had a few more that night and was taken to the ER.  It was determined that I had encephalitis - an inflammation of the brain.  The only warnings I had were that evening I had had a slight headache, sensitivity to light, and was slightly chilled, but none of that had stopped me from playing in my soccer game.  I ended up being in the hospital for four days and sent home with an Acyclovir treatment and put on some Dilantin anti-seizure medication.  I ended up being allergic to Dilantin and so they switched me to Tegretol.  I took it for six months, stopped taking it, and never had a problem since.

Until last Thursday the 23rd.  Floyd and I had both got the flu and were throwing up and just not feeling good.  The girls however were feeling fine and were not very sympathetic to our plight.  I was hesitant to call family for help because I didn't want to expose them, but by the afternoon we were getting desperate.  I called my wonderful sister and she said she could come over and take them out for a bit so we could take a nap.  So she came over and rounded up the girls and took them out, while Floyd and I crawled into bed for a nap.  I hadn't been asleep very long when all of a sudden my left foot started jerking.  While pregnant I had had some wicked leg cramps so that was both Floyd and my first thought.  But then the twitching traveled up my body till I couldn't breathe.  I was having a seizure.   I don't remember much after that, but Floyd called 911 and an ambulance came and took me to the hospital.  I had another seizure in the ambulance.

We all went back to my parents house and we spent Thursday and Friday night there.  They put me on Tegretol, but I have not responded well to it at all.  I feel sluggish, dizzy, my head hurts and in general I feel like I am walking through Jello.  I wanted to be on Tegretol versus Keppra because the literature seems to indicate that Tegretol is safe to take while breastfeeding while Keppra is definitely not recommended.  But I can't function on Tegretol and I need to function.  I am slightly frustrated because I'm not positive I need to be on drugs.  It could have just been a complete fluke, but then I cringe at every muscle twitch and am terrified of having another seizure.  I am also frustrated because I want to talk with the neurologist some more about medications, but don't have another appointment for two weeks.  At the previous appointment I was walking and talking (but not doing math very well --apparently I said that 100 take away 3 and take away 3 again was 234), but now I cannot remember anything that happened that day. 

But I called and got a prescription for Keppra.  I nursed Allie to sleep and that is the last time I'm going to nurse her.  I weaned Selena before she was ready, and felt bad for it.  I figured Allie would get the benefit of more gentle weaning.  I planned on nursing her till she was two, give or take 6 months, but she would definitely be closer to two than one.  But its not going to work that way.  She is going to be so upset when she wakes up in the middle of the night.  My poor baby.  I just hope the Keppra does work for me and this torture won't be for nothing.  And yes, I know there are plenty of benefits to weaning and some of them I am really looking forward to, but I could have been patient.  Allie is my last baby.  There was no hurry.  Then to add insult to injury I can't drive for six months.  That is going to be a huge pain.  The only good I can think about that is that hopefully I'll learn how to take the bus.