Category: VNS

All in My Head– A Story of Adult Onset Epilepsy

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It’s been some time since I’ve written in my blog. It seems time to start again, but it’s a challenge to decide where to start to pick up the speed and reengage followers. So, I’m pulling out a few old pieces that I’ve written, but maybe never posted. Here’s where we begin, with a story from three years ago……..

The bed was surrounded when I awoke.  They looked kind and seemed concerned, not angry.  Still, it’s a bit disturbing to wake up and find one’s bed surrounded by people in uniform.  The good looking fellow standing by my head began asking me questions.  What was my name?  Who was president? What day was it?  Even in my confused state I saw this fellow was quite attractive and I felt I should make a good impression.  I tried my best for witty answers, but the words wouldn’t quite form.  All I could manage was a garble.  It was as if my brain and mouth weren’t fully connected.  Nothing was quite making sense.  Where was I?  Who were these people and why were they here? Why did everything feel so unreal?

My new roommate, Jane, had just moved in a few days before.  We’d been acquaintances for a while, traveled in similar circles, but it was only now that we were starting to get to know each other in any real way.  We’d just spent a nice evening visiting, swapping stories, and talking about what was important to each of us when sharing a house.  At the end of a pleasant visit, I went to bed just like any other night.  A few minutes later Jane began to hear noises from my room.  It seemed strange, so Jane called out to ask if everything was okay.  When I didn’t respond she came to my room to find me groaning and twitching, foaming at the mouth.  I was having a seizure.  

The EMTs continued to ask questions and slowly my brain and body began to reconnect.  Eventually, they asked if I would be able to walk, with support, to the ambulance.  We lived on the second floor and carrying me down the narrow staircase was a challenge they wanted to avoid if possible.  I was sure that I could.  I got up leaning on my new helpers and wandered through the apartment I’d lived in for over a year and didn’t recognize.  Seeing Jane I thought to myself, “I wonder who that is? She looks nice.” 

I’d begun having headaches in my 20’s, some two decades earlier.  I’d wake up barely able to function.  The nausea and squeezing pain would simply be too much.  I couldn’t eat.  Looking at a computer screen or television would be out of the question.  My mind couldn’t focus to allow me to read or do much else.  So, on those days all I could do was to call in sick, go back to bed, and sleep the day away.  The headaches would take all my energy.  I’d sometimes sleep the whole day only to sleep all night too.  It would take a few days before my energy would return.  My head and stomach would ache for sometimes a full week without reprieve. 

Since I was incapable of doing much of anything on days with headaches and just wanted to hide away from all humanity, it was impossible to see a doctor during an event.  The headache events didn’t happen often, usually only every few months, but as the years went by they became more frequent probably as much as monthly.  I needed an answer.  I read. I watched videos and documentaries.  I studied everything that I could find.  I went to doctors, but could only visit when I felt well and this did me no good.  They listened to my stories, ran tests, and found no answers.  I took to calling my headaches migraines and just hoping they’d stop some day.  

That first observed seizure took me to the ER and started my long and varied relationship with neurologists.  It didn’t give me a confirmed diagnosis of epilepsy at least not on its own.  It did, however, give me a good idea of what my headaches over the past twenty years really were. It also concerned the neurologist who saw me enough to encourage me to start taking medication.  

Dry mouth, heartburn, nausea, bone loss, weight gain, weight loss, memory loss, trouble with words, difficulty walking, irregular heartbeat, loss of consciousness, aggression, seizures, depression, and on and on.  This is just a partial list of the side effects to most anticonvulsants.  Typically, once a person begins taking anticonvulsants they are on a lifetime journey of taking them.  Seizures are an invisible disability that can be controlled, but has no promise of being cured.  

One seizure, that couldn’t mean that I needed to embark on a lifetime of these side effects could it? It seemed that the treatment could be far worse than the disability itself.  How could all these horrible things be considered getting well?  I wasn’t ready to go down that path.  I had to find another answer.  There had to be another choice.  

Diet changes, meditation, essential oils, supplements, massage, exercise, acupuncture.  I kept reading. I kept researching. I dabbled in everything I could find.  A lot of things helped, nothing was the answer.  I still shook and not only did I shake, I stepped out of myself.  Seizures aren’t just the ones that we see in the movies where people fall to the floor and thrash about.  There are at least six different types of seizures.  It would be rare for me to have a tonic-clonic seizure that the media has made so popular.   

Instead one day when I was walking the dog, suddenly everything went dark.  I couldn’t see where I was. I heard something in my head. Was it voices?  Was it just sounds?  I don’t know, but I was in another world for just that moment.  I knew where I was in this world.  I knew where to put my feet as I walked.  I didn’t stumble.  I didn’t fall.  But, I was in another world too. I had seized.  This was to become a part of my new normal.  

Months passed.  I was unemployed. My job of nearly a decade had ended when the organization closed.  My options for healthcare were limited with state health insurance that covered very little and left me with medical bills that I couldn’t pay.  Still, I kept doing whatever I could, getting acupuncture or seeing a chiropractor when I could afford it, trying to eat well, take supplements, meditate, exercise, and whatever else I could.  Things didn’t seem to be getting any worse, but there didn’t seem to be any improvement either.  

Then came Christmas. I was visiting family when the seizure came.  It was the first, and as far as I know, only time I ever had a full fledged tonic-clonic seizure during my waking hours.  I didn’t know it, but apparently my body knew something was coming.  Moments before the seizure started I slipped out of the chair where I had been sitting and moved to the floor to sit.  I woke up in the ER again.  This time I woke to find my older brother with a look on his face that I hadn’t seen in more than twenty years.  The last time I had seen that look of sorrow and fear was the day our mother died.  When my consciousness returned he told me how my seizure scared him, how he thought that I was about to die.  He pleaded with me to promise that I would work with my neurologist and take medication.  I couldn’t break his heart.  I made the promise.  

Two-thirds of the people with epilepsy can be successfully treated with anticonvulsants.  The likelihood of success falls with each drug tried.  By the time the patient reaches their fourth medication the likelihood of success is two to three percent.  I’m on medication number four right now.  

I’d never had an allergic reaction to a medication in my life.  That was until my neurologists and I started trying to treat my epilepsy.  The first three medications gave me rashes, made me quiver, just generally made life awful.  Medication number four wasn’t much better, but didn’t actually cause anything that fit within the realm of an allergic reaction.  Still for years I lost words, found myself unable to count on my memory, grew frustrated and depressed with my inability to write anymore, my inability to remember names, my loss of my former self.  Perhaps the saddest was the day I had to give up acting.  I’d found so much joy in community theatre, but I could no longer remember my lines.  I had to set it down.  

It’s been about seven years now since Jane saw that seizure.  Epilepsy is still a huge part of my life.  It impacts my every day in challenging ways and in good ways too.  

There have been several times that I’ve had to give up driving.  The laws around driving with epilepsy are different in every state.  Some people choose not to ever drive again.  Some of us return to driving when we are able.  For myself, giving up my car opened the door to friendships as I depend on people to help me to get where I need to go.  It encouraged me to take time for myself, enjoying being outdoors and celebrating my neighborhood as I walk most everywhere that I need to go in my small town.  

Four years ago I started to make truly healthy food choices.  I began with giving up caffeine on the advice of my neurologist.  Before then I had been a big fan of coke products, drinking at least one or two every day. Cutting caffeine cleared my head in a way that I’ve never looked back on. But three years ago was the really big leap. I’d reconnected with an old friend who works in holistic medicine and opted to have my food allergies tested. The test revealed nine foods that cause mild allergic reactions for me.  On the top of that list was cane sugar.  For three years now, I’ve done my best to eliminate my allergens.  Sometimes I fail, but most of the time I succeed.  I’ve lost over forty pounds and gained a new energy.  I’ve learned to limit the processed foods in my diet and to cook real food.  

I don’t like taking medication.  I wish sometimes that I didn’t need to, but until a cure for epilepsy is found I have a disability and I need to use the tools available to me to control it and live my best life possible.  Exercise, meditation, keeping a balance of life and work, finding joy in each day, eating well, celebrating my circle of support, and just treating myself with all the kindness and care that I deserve.  

I’ve learned a lot from these seven years now that I have been able to count myself among those with a disability, but perhaps most importantly I have learned  to study, read, watch documentaries, ask questions. Do everything that you can to learn about the health challenges and disabilities you face, but at the core the most important thing, the thing that will keep you alive, that will keep you going is to just simply recognize yourself as someone who is still worth your own respect, still worth your own caring, still worth your own love.  Our disabilities impact our lives.  They can have an impact daily.  But, they do not define who we are or our level of worthiness.  That’s what moves me forward, to know what is in my brain isn’t in my heart and soul. 

The First Week Going MAD

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Tuesday marked the end of my first week on the Modified Atkins Diet for my epilepsy. It’s far too soon to know if the MAD has impacted my seizures at all, but I can say that I have seen some changes and have learned a bit too in this past week.

Before I started this journey I created a list of “MAD Hopes”, 25 hopes and goals that would help me know if I am succeeding or not. These hopes and goals include things related to my epilepsy like seizure freedom and decreasing medication as well as other things related to my overall physical, emotional, and spiritual health. Reviewing my list this morning I can say that I am doing well. I am five pounds closer to my goal weight. I don’t have the bloating that I did before I started. My breathing is better and my athlete’s foot is clearing up. I think I may be starting to sleep a little better. I definitely feel good about my food choices and how they impact the planet and myself. Thus far, the MAD is doing good for me.

It’s not been a perfect trip so far. Each day I check my ketone levels at least once using a urine testing kit. Each day now it seem my ketone levels show up high on the scale. Some days this is not a big deal. Other days it comes with a bit of fatigue and maybe some nausea and stomach discomfort. These are signs of low blood sugar and could indicate significant problems coming. Thankfully, a great lesson I’ve learned this week is one that many people with diabetes have known for years– the amazing healing powers of apple juice. Two tablespoons of juice and I am back within normal ketone levels and fully operational. I am told that my body will likely adjust, my ketones will come into balance, and I won’t be needing apple juice regularly any more.

I’d like to say that the new diet has increased my energy and clarity, but it’s hard to say. My life has been a bit unusual having had a few weeks off looking for my next place of employment. It’s meant a lot more time sitting and typing and hanging out with the dog, not a time that requires a great deal of energy or quick thinking. With luck and some work I will be back in the workplace soon, then we’ll see how the MAD has impacted my clarity and energy. Meanwhile, I am happy with what I am seeing.

MAD with Epilepsy Day 1

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It’s already been a long journey even though I only began yesterday. Yesterday was the first day for me on my Modified Atkins Diet (MAD) for epilepsy. I am already learning.

I met with my dietician Kelly Faltersack in the afternoon yesterday. I’d already gotten my starter pack information and had read and watched quite a bit on the diet, so I felt safe eating within the diet for breakfast and lunch and making yesterday my first full day with the program. I will say that I encourage anyone who reads this and wants to start the MAD or another keto diet for your epilepsy or other health challenge, talk with your health team first. There are a lot of details they can help with to save you a lot of trouble and make success more possible.

Just in my first day I was struck by what it really takes to rebalance my diet and get sufficient calories. A number of years ago I worked with a different Kelly, an old friend of mine and a nurse practitioner, to do allergy testing and revamp my diet. At that point I moved from being a junk food junkie to really becoming a pretty healthy eater. I don’t keep sugar in my house. I also don’t keep chips or pop. I will sometimes have some potato chips or a non-caffeinated soda when I go out, or at least I would until now. The point being that for an American I eat well. Still, yesterday I found myself getting hungrier than usual between meals. I looked at the tracking system I am using and realized that even with adding what I thought was quite a bit of additional fats, my calories were too low. Yesterday I ended the day with a grand total of 888 calories. ( *Note- calorie counting is not a regular part of MAD for epilepsy) That was okay for a day, but clearly not healthy for more than a few days in a row. It became rapidly clear that I need to figure out a new way of understanding servings. It is an interesting puzzle– how to get sufficient calories without going over 20 grams of carbohydrates in a day.

So, today I am working on the puzzle. I added another egg and two tablespoons of heavy cream to my scrambled eggs. I am glad to say that I’m not feeling as hungry today so far. It is still fairly early in the morning though. It’s interesting to look at food servings in that different way. Normally, I would want to add something bigger, something that takes up more space or seems heavier to fill myself. It is strange to me to think of just a tablespoon or two of liquid as a large source of calories and energy. It’s always been true. I’ve just never thought of it before.

My other challenge for the day will be building up my water intake. Typically, people are encouraged to drink at least 64oz of water per day which many of us don’t succeed in doing. Because of my epilepsy medication and being on the MAD my neurology team is advising me to drink 74oz. That’s a lot of water! But, it sounds a lot better than the alternatives of constipation and possibly kidney stones, so I am holding up my water bottle and toasting good health to us all.

Is anyone else out there using the MAD to address epilepsy or other health issues? I would love to hear your stories. Please share.

Going MAD With Epilepsy

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I was diagnosed with epilepsy nearly a decade ago. I’ve tried numerous medications with some success, but also with quite a few challenges brought on by allergies. A few years ago I had a vagus nerve stimulator implanted to assist in stopping my seizures. It helped significantly, but I still have a seizure every month or two. A seizure once every month or two isn’t much in comparison to the many others who deal with dozens or even hundreds of episodes every day, but it is enough to impact daily life.

A few months ago I gave up driving after an accident involving a seizure behind the wheel. I don’t know if I will ever drive again. Instead, I returned to Madison, a city with reasonably good public transportation and known for its walk/bike-ability. Now, I find myself waiting to find out if a potential employer may withdraw a job offer since I was open with them about my disability, deciding what to do and remembering past similar experiences. Even with just one seizure every month or two it is an interesting learning experience in understanding living with disabilities.

It is a challenge. There are struggles. There are also opportunities to live, to improve life, to grow, to heal, and to become a better me. I am setting forth on the journey of one of those opportunities. I’ll be meeting with Kelly, the dietician on neurology team, on Tuesday for a educational session that will start my Modified Atkins Diet (MAD), a form of the Ketogenic diet.

The Ketogenic diet has been being used effectively to treat .epilepsy since the 1920’s. As medications for the disability became available use of the diet disappeared because of the challenges associated with maintaining it. Over the past two decades it’s become used increasingly with children and now is beginning to be used more with adults as well in forms like the MAD.

Over the past week I’ve been mourning the letting go of foods that I associate with comfort, treating myself, or maybe the “good life.” I’d already made significant changes to my diet a number of years ago, so I don’t eat fast food nearly every day or make pasta a regular part of my diet like I used too. In fact, I don’t even have any cane sugar in my house. Still, I’d rather have a burger with a bun than without, prefer potato chips over kale chips, and like a good piece of pie with ice cream every once in a while. Some things I will say goodbye to, others will be significantly limited. The average American eats about 250 grams of carbohydrates daily. It’s my understanding that the MAD will put me at about 20 grams of carbs each day. My intake of fats will increase and many of my go-to carbs will disappear. This will allow my body to go into ketosis, using fat for energy.

This morning I sat down and created a list. It was a list of “MAD Hopes.” I am beginning my celebration of a new beginning. It began with a list of hopes for what I will achieve from this journey, both small and huge. The most important among them being reaching seizure freedom. Over the upcoming days, weeks, months, and maybe even years I hope to take you on this journey with me as I blog about my story, share my joys and struggles, and what learn along the way.

New Life

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The pandemic has provided its challenges and gifts. A lot of people seem to be looking at this past year as having been all about struggle and loss. A year that we’ll look back on with horror or at least deep sadness. I’m not so sure, at least not for myself.

Sure, there has been sadness. My Dad died last July. He was 92 years old. I miss him. I’ll always miss him. But, sadness at the passing of someone who is elderly and in the grips of dementia is always mixed. I will miss him, but I am also joyful that he could let go, move on, and no longer be held by the pain and fear that had become his life. Yeah, I got laid off. But, I got laid off from a job in Minnesota at a really unhealthy workplace where rumors, put downs, lying, and just generally disrespectful behaviors were the norm and wound up through a series of events finding myself working for a good friend on an incredible creative project and back home in Wisconsin.

It’s been a year for being open to possibilities. Last January a severe allergic reaction to a new medication for my epilepsy led to my doctor and I pursuing options beyond medications. In July I found myself at Mayo in the epilepsy monitoring unit. I started my visit on the anniversary of my Mom’s passing. I ended it a week later just after my Dad died by making the decision to honor them both by getting a vagus nerve stimulator implanted. I came back a week later and had the little device that is changing my life implanted close to my heart, reminding me of them. Now, it sends a stimulus through my vagus nerve every three minutes and, along with my medication, is controlling my seizures and making life normal again. My energy is back. It’s been months since I’ve woken up in the morning to a headache and sore tongue, and best of all my doctors and the state of Wisconsin agree that it’s safe for me to drive and live with the independence that a car provides when one lives in a small town.

A lot of people have gone on about boredom and loneliness because of the pandemic and I confess that I’ve had some moments of wanting to get out too, but mostly I have to admit I’ve appreciated this time alone. I’ve been reminded of the joy in slowness and the importance of creative space. I took guitar lesson for awhile, long enough to give me some basics to work with and to continue to teach myself. I’ve started to work on becoming an author of children’s books. Now that it’s spring I just started doing a little volunteering at Taliesin. I’ve been reading a lot more, continuing to write here, doing a little drawing too. How could I be bored or seeking something else when I am given the opportunity to find the creative space? The world runs us too fast and I am thankful that we’ve slowed down for the moment. It is sad that it took a pandemic to slow us, but I can only hope that we find some lessons about caring for our creative selves from this experience.

It’s not been all bad. It’s been a year for staying home and eating home cooking, a year for being creative, a year for relaxing and getting to know ourselves, a year for embarking on a new stage of life in so many ways. What lessons have we learned? What will we carry forth? What possibilities have we opened ourselves to? What is this new life that we are embarking on as this pandemic, hopefully, begins to draw to a close?

Five Months Later

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It’s been five months now since I lay in the epilepsy monitoring unit at Mayo, practicing my guitar, reading, watching movies, crocheting, doing just about everything but having seizures. But, from that visit and my prior one the doctors had enough information and we agreed to surgery and the installation of my VNS. While my seizures aren’t totally gone yet, it’s been a huge help both significantly cutting the number and intensity of incidents and just giving me better energy and raising my mood.

I am thankful for that for many reasons. A big one is that today also marks the five month anniversary of another huge change in my life. It was five months ago today that Dad made his journey to the spirit world.

I’ve not lived at home for any length of time since 1990. For the six years prior to Dad’s passing I lived in a different state. I only saw him around holidays and maybe for a few days in summer, but until his dementia took over we talked every week, usually Sundays, on the phone. Over the past year with his dementia taking hold phone conversations weren’t an option any more. I saw him last Christmas. He still knew me then, but by Easter when I called, because COVID didn’t allow for a visit, he no longer understood the staff when they tried to explain to him how to use the phone. I would never hear him speak to me again, at least not in this world.

It is the strangest thing, neither sad nor happy, but simply beautiful I suppose. I have seen more of Dad in the past 5 months than I had in years. He visits almost every night in my dreams. I don’t remember what he’s said when I wake, but he’s always happy, always his smiling self, laughing and joking, and just enjoying being where is and still watching out for his baby girl. Each day it seems I have a moment where it hits me again that he’s really gone. I can’t call him. I really won’t see him. He won’t be there when I go visit family. It hits hard and knocks the wind out of me for a moment, but my dreams bring comfort. While he isn’t here, he isn’t gone.

Over time, I suspect, both the daytime hits to my heart and the nighttime dreams will fade and eventually go away. But, I really do believe that Dad will always be there. That he will always be watching out for his baby girl. I feel so lucky.

Here I am five months later in a new job that I like, living in a new place close enough to family and friends that even with COVID I’ve been able to get together with people for hiking and dog park visits. My seizures are getting a lot better. And, having just looked at the goals I wrote before moving, I can see I’m doing well is most all of the area that I want to. I am thankful.

Growing Clarity

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It’s been almost two weeks now since my VNS device was turned on and nearly a week since my first increase in voltage. There will be six more increases in voltage until I reach my full dose that will, hopefully, significantly decrease if not stop the seizures that have been a part of my life for so many years.

Already the little device seems to have become a natural part of my being. This is so much different than medication. Sometimes I can feel the little buzz in my throat. I think of it now as a frog in my throat and it reminds me of Kermit singing “Rainbow Connection” from the Muppet Movie, one of the first movies I ever went to see as a child. It brings me good memories and comfort.

Where almost every medication I’ve tried has brought me rashes, tremors, fogginess, and just a general feeling of malaise, I am slowly feeling the curtain lift with this treatment. Buddy and I are back to walking about 2 hours a day. My focus is returning at work. I’ve been feeling good enough about myself and my direction to get myself a few household gifts, things I’ve needed for quite some time but just never got around to purchasing. I’ve returned to actually reading, not just listening to audio books. A lot of little things, good little things. I feel the world turning in a good direction.

I am once again beginning to move toward bigger questions. Walking through the small town where I live I’ve been seeing lots of Black Lives Matter signs. I have one in my own yard. There are very few Blacks who live in the community. I find myself wondering who the signs are for. Are they here in support of Black people facing discrimination and racism or are they here to make White folks feel good about themselves because they put up a sign? I don’t know. I keep puzzling and have found no easy answers, but it does seem to be a question worth pondering.

Mixed Feelings

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What strange times. I continue to find myself flying about in this bizarre whirlwind of transition where I don’t quite know what to feel or how.

I spoke with a financial counselor this afternoon. I’ve worked most of my adult life in small nonprofits and childcare, so low paying jobs without a lot benefits beyond feeling that I’ve done some good in the world. That means I’m like most Americans haven’t built up a big nest egg and have a few bills to deal with, nothing major. I decided to talk with the counselor though after becoming a beneficiary of a small sum of money. I wanted to use it the best way possible. She was really helpful and we were able to figure out a good plan to address my debt and build my savings. I left the conversation feeling really good. Yet, it feels strange to feel really good about those kinds of conversations.

Mixed feelings came with my VNS implant too. It’s an amazing thing to be there in the doctor’s office getting this little device turned on, to feel that little tickle and feel my voice change, to know that it might really be the ticket to regaining my life and stopping my seizures. Yet, when it was done I couldn’t call my Dad to tell him how it went. All I could do was rely on the belief that he already knew, that he was there in the room with me, taking care of his little girl.

He keeps taking care of his little girl, helping me with my finances, making sure I’m safe and doing all that he can to help me be healthy again. It’s making me so happy, so thankful and at the same time I just want to see him smile, to give him a hug, to tell him I love him one more time. I guess that’s how it always is and that’s how it will be. I am so thankful though and amazed at that power, that power of love that keeps taking care of his baby Amy even after his body is gone.

A New Song

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My mom loved to sing. She sang all the time. She was part of the church choir. She sang while she did housework. She sang in the car. She sang while she rocked the grandbabies. She even had a really annoying little ditty that she sang to wake up sleepy kids who were in danger of being late for school. I miss that voice. I’ve been thinking of that voice as I prepare to get my VNS to turned on in a few days.

I’ve sung since I was a baby. Mom and I sang together all the time. It was something we both loved and that brought us together. These last few days I’ve been listening to a lot of the old country songs we used to sing together. What an amazing era of music. I don’t sing as much as mom did, but I still sing quite a bit and find it to be one of my greatest healers

The VNS is implanted in my chest with wires that go up into my neck and wrap around my vagus nerve. It will send a small electrical wave every couple of minutes on a regular schedule and whenever my heart rate jumps or it’s manually set off. When that electrical impulse goes off it’s likely my voice will change, getting a bit scratchy or maybe causing a cough. I find myself wondering if I’ll be able to sing.

I was listening this morning to Dolly Parton, Loretta Lynn, and Tammy Wynette singing together and thinking about mom. I was reminded mom never sang like any of these women. I don’t sing like any of these women. It doesn’t matter. There are times and places where hitting the right note is important, but the thing that really made my mom’s singing beautiful was the way that her heart showed through in every note whether her pitch was perfect or not. My voice will scratch. I might not be a good addition to a choir again, but I’ll still be singing along with the radio and with the little kids in my life and that’s what it’s all about.