Tag: epilepsy and diet

All in My Head– A Story of Adult Onset Epilepsy

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

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

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

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.

The End of the Challenge

Well, so I will admit that I disappeared for a while. I’ll also admit that wasn’t good. I haven’t been eating like I should. There’s been too much pizza and snack foods and not enough light and healthy vegetables. The result has been an additional 5 lbs.

I can feel it in how I’m breathing. I can feel it in my mood. I am just starting to feel the edge of sadness. I need to get back on track and it’s a tough time to do that. I got offered a new job and I got an interview for another position. So, right now I am finding myself waiting and deciding which of two very different roles might be the right one for me. I am getting to ask myself about my values. I’m getting to ask myself what I need and what I want. I’m in a space of making hard decisions.

I need my health to help and not hinder my ability to make good choices. So, I will keep trying. I will move forward. I have learned from this experience and I will take that learning with me.

There will be more posts to come. I hope you’ll keep reading.

60 Days and Where Am I?

So, I’ve not been entering my blog posts as religiously as I was for quite a while in this exercise. It doesn’t mean that I’ve given up, not at all.

I think what I have done is made a regular habit of be conscious of the fruits and vegetables that I am putting into my body. I don’t always get the full 6-9 cups, but I am always getting at least three which is more than a daily serving. I feel good about what I am accomplishing.

Things are busy with work picking up at the university and my considerations of moving back to Wisconsin. Still, I am eating well over all and getting out to be social and exercise as well. This weekend I got to spend time with my brother and sister-in-law who I normally only see once or twice a year. It was a great day at the Western Minnesota Steam Threshers Reunion. It’s really amazing how many people attend it each year. It’s just such a delightfully innocent, old-fashioned, simple kind of fun. And, this year it was filled with laughter and stories from our growing up years. Yesterday and today were for hiking. Buddy and I probably put in about eight miles at our nearby state parks. He loved it! It amazed me how after walking four or five miles yesterday he was ready to run when we stopped by the dog park. He played with friends for over an hour! Tonight, he’s a bit more relaxed. I suspect that it’s due to the flea and tick and heart worm preventative medicines.

All of these things, along with taking my supplements and drinking lots of water, and offering prayer each day are helping me feel my best. It is a good life and I am thankful.

Day 54

It’s a journey, but I am getting back on track.

This morning started with a bowl of blueberries and banana with a bit of almond milk. Last night I cooked up a couple chicken breasts with squash, beans, and tomatoes. So a bit of that was lunch. Before dinner I walked out to my garden. It’s a bit of an overwhelming and neglected space. I came home with a big bag full of squash, cucumbers, some sort of little red peppers, and tomatoes. Dinner was scrambled eggs with peppers and tomatoes with a side of cucumbers with hummus. Dessert was blueberries, strawberries, and bananas with a bit of almond milk.

It was the healthiest mix of food that I’ve had in about two weeks. With that and the students returning to campus I am feeling in a better state of mind than I have been in the last week or so. It is good. Now, to keep it going again and see what great things can happen.

51 Days and I’m Back

Okay, so I disappeared there for eleven days. I went home to Wisconsin for a few days and used the excuse of a vacation to not pay a whole lot of attention to tracking my fruits and veggies. I still ate pretty good for the most part though I did indulge in some sweets and definitely took on some of Wisconsin’s greatest cheese and beer. I would strongly recommend the raspberry tart beer from New Glarus. That’s saying a lot since I’m really not much of a beer fan.

I haven’t gotten back on track fully yet even after a week back in Minnesota. There’s still sugar in my system and I’ve not fully backed away from it. I’m not fully back up to 6-9 cups of fruits and vegetables though I am getting some. I just added in some coconut oil and started a turmeric supplement today. I’m hoping that this stuff will help heal my brain.

I am seeing the need to get away from sugar again and just get back on track. I’ve been feeling grumpy the last few days and need to revive. I am putting lots of work into my next adventure. Sending off my applications and hoping to get back to Wisconsin soon. But, meanwhile this is home and there must be joy here somewhere.

40 Days, Over Halfway There

Okay, I admit it. I didn’t measure my food today. I operated visually. I need to get back to measuring to assure my accuracy.

I don’t think I hit six cups today, but I was close. I started the day with my fruit with almond milk. Had a lunch of pizza and a large salad. Dinner was plenty of refried beans with tomatoes and and some chips. So, not a great health food wonder day, but it wasn’t horrible either. For years my typical days had cereal, grilled cheese, and pasta with sauce from a jar pretty often. Today had some green stuff. Heck, it had multiple colors of fruits and vegetables. I feel okay about that. It was kind of slacker, but kind of good caring too. That’s an okay thing to do.

The Question of the 39th Day

39 days in to this challenge to increase my fruits and vegetables intake and I’m doing well with getting at least six cups a day. Since I added in an effort to increase my water intake a couple weeks ago I’ve been mostly doing better on that too though the last couple days I’ve probably been running a bit dry. I can feel the dull headache now and need to get myself a couple more cups. I’m not doing well on decreasing the number of times I go out for pizza or the amount that I eat. I am going out to other restaurants less though.

That brings me to the question. I’ve been having a tough time at my work for quite a while now, but it ebbs and flows. Recently, it’s been quite frustrating and I’ve found myself feeling my self-confidence ebb away and just generally feeling down. Then, I go out for pizza. I find myself wondering– is it the fact that I am feeling worn, beaten by my workplace, and just down on myself that leads me to eating something that I know isn’t good for me and that doesn’t even taste as good as the many homemade dishes that I can treat myself with or is that I am eating something that doesn’t taste all that good and isn’t good for me that is pushing me into feeling down, worn and beaten? It is that circle, much like the cycle of addiction I suppose. So how do I get out?