Category: diet

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.

Not Done Yet

It was four years ago now that I contacted an old friend from high school and asked her for some help. I was struggling with seizures, depression, fatigue, and just general poor health. I was also at my highest weight of my life, tipping the scales at 217lbs. I was tired of my epilepsy medication which seemed to be causing more damage through side effects than helping and I was just tired. I needed some support. I needed a guide to help me reassess my approach to food. Kelly had studied nursing after high school and become a nurse practitioner working in wholistic medicine. She seemed my best chance. I sent her a note and set up an appointment.

It took a great deal of commitment just to make that appointment. Like many wholistic healthcare providers, the company that Kelly was working with at the time didn’t work with my health insurance and cost was significant for my small income. But, as it is with so many illnesses and addictions, there comes a time when we hit bottom and have no other choices. I had to do something and this was it.

After some allergy testing we removed a few foods from my diet and my life began to change. The foods removed for me were avocado, kidney beans, green pepper, black pepper, potato, pineapple, cane sugar, buckwheat, and olives. None were major allergies. All were irritants to my system.

Over the next six months I would lose nearly 50lbs regain energy and start a new adventure in my life that would both cause me great pain and give me some tools to keep healing. That adventure was leaving my work at Toxic Taters (a small nonprofit fighting pesticide abuse in Minnesota) for the University of Minnesota Morris and the Center for Small Towns.

The Center for Small Towns (CST) was a lonely place for me. I loved my students. They were great. There were some wonderful faculty and staff on campus and in the community who I’ll always count as friends. But, it was clear from the beginning that I didn’t fit in on campus. The prairie wasn’t wasn’t my home and neither was my workplace and it hurt.

Thankfully, Kelly’s guidance had given me a foundation to stand on during my three years in Morris. I didn’t stay 100% true to the dietary advice, but I’d made the big changes that I needed. I could now tell the difference when I ate well or I didn’t.

It’s easy to sink into bad habits and over the past four years between the struggles of having spent three years in a place that I didn’t belong, dealing with broken bones, surgeries, getting laid off in the middle of a pandemic, switching jobs, and moving among other things, I have sometimes resorted to my old frenemy junk food. I’ve gained back about 22 of those 50lbs that I lost. But, I’m not done and I’m getting back on track once again. I am happy to be back in my home state of Wisconsin. I’ve recommitted myself to eating what’s good for me and exercising in ways that I enjoy to build my health.

Right now that means that I’ve just restarted running, not fast or far, but my dog and I are running just a bit to start our morning walk. I’m also spending 15 or 20 minutes a day to workout with my resistance bands and later in the day 20 minutes or so doing yoga. Each day I’m watching what I eat, making sure that it’s mostly fruits and vegetables and that I’m avoiding processed foods and cane sugar. I’m just starting to see my weight go back down. I am confident that I’ll reach my goal weight, probably in the next six months or so. More importantly I will continue to meet my goal of maintaining my health and happiness for the long term.

I am thankful to Kelly for helping me out four years ago and hopeful that my experiences can provide something for others moving forward. It’s an up and down road, but we are all moving forward.

Better than Pizza Ranch Day

I didn’t go to Pizza Ranch today. Some days that’s a victory. Today was one of those days. There wasn’t anything wrong with today. It was actually a fine day, beautiful weather, laid back schedule with enough to keep me busy but not more than that. Still, this morning I found myself craving some bad for me food.

A few years ago, with the help of an old high school friend who now practices wholistic medicine, I made some major dietary changes and lost about fifty pounds. It was a strict diet that removed nine foods that appeared to be allergens for me. After a few years my gut had the time to heal and I was able to reincorporate some of the foods successfully. A few I still can’t eat without side effects. Unfortunately, these are the ones that are most addictive for me as it typically true for anyone dealing with addictive behavior. We are drawn to the things that are most harmful to us for that moment of good feeling. For me, from that list of nine allergens, I still can’t eat cane sugar or white potatoes without feeling it in my body. It comes in stomach aches, exhaustion or “sugar coma”, bloating, and just fatigue and feeling negative. It’s something that I know and something that I feel almost immediately after eating too much sugary stuff or too many fries or other potato products. Yet, sometimes the craving gets me.

The other issue that I have often questioned though it’s never been diagnosed as an allergy is dairy. There is a quite a bit of literature out there about how humans aren’t meant to eat dairy and how our body’s aren’t made to process it. I pretty much gave up drinking milk several years ago. I don’t really remember when. That wasn’t a big issue for me. Milk was good when I was growing up and we got it straight out of the bulk tank, the kind of milk that you shake to distribute the cream. That milk was good. I’m quite indifferent to pasteurized milk from the store, so I’ve never missed it. The challenge for me is cheese. Cheddar, mozzarella, pepperjack, string cheese, cheese curds, pamessan, cream cheese, the list goes on. For many years it wasn’t unusual for me to have cheese three or more times a day. In recent years I’ve cut that a bit, but I’m still a cheese junkie. I can admit it.

Reading a great deal about epilepsy in my own search to control my own seizures I keep coming across articles suggesting the possible connection between dairy intolerance and epileptic seizures. After seeing these stories for years, I’m biting the bullet and seeing if cutting my dairy consumption further might control my seizures. So, going the stove today to cook up a chicken breast and some veggies and making myself a couple of chicken wraps instead of going to Pizza Ranch was a victory that I can be proud of. I probably won’t cut out all dairy. I am, for now, not buying any cheese made with cow’s milk for consumption at home. I may have it as a treat when I go out. I will still use butter. I’m giving up yogurt made with cow’s milk too. Ice cream is already something that is best for me to avoid because of the high sugar content.

Each day, each action is valuable. I hope that others out there who read this piece might join me in doing whatever piece is right for you, making that one change in your diet that will make you healthier. We are all on a journey. Five or six years ago I was drinking pop every day and eating fast food at least five or six times a week and not eating all that much better when I cooked at home. Now, I cook almost all my meals at home with fresh organic fruits and vegetables. I use very few processed foods and drink mostly water. I feel so much better, happier, healthier. I sometimes wonder what might have happened if I hadn’t made those changes? My epilepsy was diagnosed about eight years ago now. It’s coming under control. If I hadn’t changed my diet, would I have been able to keep my seizures down? Would they have kept getting worse? I’ll never know the answer to that, but I am glad to have done what I’ve done and look forward to continuing to get healthier.

Water Matters and Other Great Lessons from the Day

It’s been hanging out around 90 degrees in Rochester today. It wasn’t a good day to leave my water bottle in the hotel room. It was good that I was smart enough to wander through the Arts Center rather than go with my original idea of taking a longer walk along the river. I suspect that feeling of being worn out and the headache that came about by the time I got back to hotel room a couple of hours ago might have moved into seizure territory had I done differently.

It’s funny. I take much better care of myself now than I used to. Not having my water bottle didn’t mean that I didn’t drink water today. I had a sparkling water with lunch and a couple of glasses of water with dinner as well as the water I’d drunk before I left the hotel and a smoothie in the morning. Once upon a time I might have had the smoothie, but lunch and dinner probably would have included a cherry coke or some other sugar and probably caffeine laden poison. Now water just makes sense to me. It’s the thing that I drink most. I don’t eat much junk food either. It really is something that I have as a treat and even then I tend to go for just a bit of something really good. Life has changed me. I see my relationship with my body differently and treat myself better. It’s good.

Anyway, today’s adventures at Mayo were mostly pretty simple. I started with my blood draw and nasal swab. The blood draw waiting area had the grumpiest group of patients I’ve seen at Mayo, but I didn’t find it bad at all. My blood was drawn by a student and she did really well. I was impressed. I know that my veins can be tough and even that early in the morning I was wondering if I was a bit dehydrated.

The nasal swab was quick. It sucks, but that’s no surprise. It’s just not going to be pleasant to have a q-tip shoved up your nose. That’s an obvious reality. I left there thinking, “I am really glad that I don’t have Lauren’s (the q-tip person) job. Can you imagine putting q-tips up people’s noses all day? Well, I am thankful that she does it and hope that she finds reward in her work.

After that was a trip to the allergist. She’s not convinced that the diagnosis of DRESS Syndrome that I got back in January was correct. She’s wondering too why my rash reappeared several times since then. But, since it’s gone right now it’s a bit tough to tell. She’s going to keep studying the information that we have. I’ve agreed to see about getting a skin biopsy if the rash reappears again. Personally, I think my hope is that whatever it was is just done.

The most interesting thing though about the visit with the allergist wasn’t so much what I learned about the issue, but what I learned about my memory of the past few months. Thankfully, she could access all my records because even with my notes I had jumbled dates and wasn’t even certain what month things happened. It was really interesting. It leaves me wondering how much my memory is being impacted by my seizures and medication and just how much is the stress of life these days, but it was a mess. I suppose I will learn more when I have my memory tests next week.

Until then, I am on vacation enjoying the sites of Rochester and, honestly, mostly just taking advantage of being in a larger city than my current home of about 5,000 and eating a whole lot of good food at all the sidewalk cafes!

Be well!

Which Comes First, the Brain or the Gut?

Which comes first, the brain or the gut? It’s a valuable and confusing question in my health journey these days. I wish I knew the answer.

I made another trip to Mayo last week to meet with Dr. Cascino to discuss my epilepsy journey. We agreed that we’re not happy with the results that I’m getting from my medication and that, with my history of negative reactions to medications, it’s time to look at other options.

So, while I’ve been spending the last few weeks trying to detox to clean up my gut and recover from my latest recurrence of DRESS Syndrome a few months back, I now find myself getting ready to go back to Mayo for more tests and the possibility of a whole new plan to address my epilepsy, maybe including brain surgery.

I don’t quite know what to do with my diet right now. I’ve mostly been sticking to it. I figure that it’s a good thing to give my gut and, by extension, my whole body all the support that I can. But on the flip side I find myself thinking, why not wait until I know what’s going on with my plan of care? I think for the moment I am just going from moment to moment and maybe it’s giving me a chance to learn.

Today, I had a bagel with cream cheese. Shortly after, I noticed the bloating and heaviness in my gut. I don’t know if it was the dairy or the grain or maybe some other ingredient, but I strongly suspect that my body wasn’t impressed by the bagel though I’ll admit it tasted really good. Eating a little something like that on occasion right now probably isn’t all bad if I’m writing about it and learning from it, discovering what I can and can’t eat and feel good. The trick is to maintain a diet that is vast majority fruits and vegetables.

I did notice today, before my bagel discretion, that I am finally starting to regain my energy again. I’m walking more, starting to do yoga a bit again, practicing my guitar a bit more, and napping a little less. I’m slowly coming back to normal. I am hopeful that I can overcome DRESS and that with the help and guidance of my Mayo team I can become seizure free too. It’s exciting to imagine what that might be like to regain even just a bit of my former self. I’ll never be a decade younger, but there is some hope that my mind will work a bit better again. I guess we’ll see. Life remains an adventure.

The Next Step

I made it through the detox. It may have helped that I think I had a seizure last week. It left me exhausted and without any appetite. That made it much easier to limit what I was eating. For several days I had nothing but berries with coconut milk and maple syrup for some meals and black beans and cauliflower rice for others. By the end of a ten day detox I’d lost about nine pounds. It wasn’t what I wanted to do. It’s okay that I lost the weight, but it was a lot faster and harder on my body than I wanted. I was tempted to stop and not do the AIP, but it seems a waste to not at least give it a try. So, the plan at this point is to move forward with the AIP for the upcoming month to see what happens.

I’m not going to be too strict. I’m focusing on the big picture pieces; keeping out dairy, eggs, grains, nightshades, etc. I’m not going to put energy limiting my fruits. The goal is just to give my gut a break. I am hoping that I’ll rebuild my vegetable habits. I am hoping that rebuilding my vegetable consumption habits and giving my gut a break will help me get back to feeling healthy.

Over the next month I hope to pay attention to my body and just see what happens to me.

Day 7 of Detox

It’s day seven of detox and day two of being sick. Two days in a row of barely eating must have some plusses for detoxing, right?

It’s been berries and coconut milk for some meals and cauliflower or cauliflower and beans for others if I have anything at all. Tonight I went wild and had some sweet potato chips that I baked the other day.

I am writing this just to keep my place, so I can look back and know what happened with my detox.

Detox: The Halfway Point

Yesterday, I had plenty of energy. I did a lot of stuff. Today, I slept in. I’m usually out of bed somewhere between 6 and 7am. Today, I woke up a few times, but just went back to sleep. I didn’t get up until almost 9am. I didn’t get much of a nap today, just laid down for a bit and listened to a meditation. I don’t think I fell asleep at all. Now, at 7:30 I am exhausted.

I didn’t do much today. I could feel a slight tired ache in my muscles. Doing yoga this afternoon reinvigorated me for a while, but it was definitely a lower energy day than yesterday. Still, a lot better than just a few weeks ago so I am happy. Plus, I expected that there would some down days. I know my body is going through a lot. Just in the last five days I’ve lost 4 pounds. It will take some energy to find balance and it’s important that I allow myself rest.

Buddy and I spent a little time at the dog park this morning. We took a walk this evening. This afternoon I tidied up the room that I’ve been using as my yoga studio (sounds much classier than spare bedroom, doesn’t it?). The tidied up space really makes for a much more grounded practice. Otherwise, all I did today was laundry, guitar practice, and a few little kitchen projects. I grated some cauliflower so I’ll have “rice” ready for the next day or two. And, I made sweet potato chips so I have something to snack on.

Beyond that I sat and relaxed watching videos and reading about AIP. I’m getting ready now for the switch in a few days. It’s confusing. I was looking at recipes and there seems to be some inconsistency on what can be eaten. Maybe that’s because of the process of elimination and reincorporation. Some people may be at a stage where they are eating seeds and others aren’t. The individual really has to decide what recipes fit their version of AIP. As I’m just getting into it, that means a lot asking myself “Is this on the list of things I can eat or not?”

I am glad to say that my longing for cheese from day one seems to have melted away. Today though I wanted something sugary. It probably didn’t help looking at AIP desserts. I’ve been totally sugar free (besides the sugars in the fruits and vegetables I am eating) for the past five days. Today, I’ll admit I added about teaspoon of maple syrup to a bowl of mixed berries and coconut milk. It was delicious! Sometimes it’s important to decide what healthy indulgences are okay. I figure a teaspoon of maple syrup on occassion is just fine.

I hope you are finding your healthy indulgences and taking good care of yourself today.