This is the second in a two part series about my story of overcoming epilepsy. I am hoping that it sheds light on the daily struggle of those who have epilepsy, gives hope to others (and their families) that you are not alone, and is helpful in the lessons I have learned and share through my experience. I know that all seizures are NOT the same and that what helped me will not apply to everyone. However, the powerful gut-brain connection IS the same and nutrition plays a huge role in optimum brain function in all of us.
At my first appointment with the new neurologist I told him about the Lamictal blood test I requested, and that my old neurologist told me it did not exist.
“The Lamictal blood test is right here,” he said, as he showed it to me on the list of lab work.
I was relieved that someone knew what I was talking about! I felt like I was making some progress. I agreed to do a 24 hour ambulatory EEG hoping it would give me some answers about the frequency of the seizures I was having. The procedure involves
securely hooking up electrodes to your head with a type of glue called collodion. The wires are attached from your head to a small black box you wear around your belt for one day. The brain waves are captured by the box and when you feel like you are having a seizure, you press a button to capture specific moments of brainwave activity, like a camera. When the 24 hours are over, the box is brought back to the neurologist’s office and the file is uploaded to a computer so the neurologist can review it. The unpleasant part is removing the electrodes with acetone (nail polish remover). I have long hair so this was a tedious and horribly smelly and painful process.
The EEG Reveal
After 24 hours, I went back to the neurologist, excited to see what we found.
“Well, I reviewed your EEG file,” he said, with a concerned tone. “You definitely caught about eight seizures when you felt you were having them which is great.”
“Oh my gosh! That’s so exciting!” I said.
“The problem is that you also had about 60-80 seizures that you were not aware of,” he said. “Now, I have seen only one type of seizure study for ones like yours but the report is written in French.”
I was excited but devastated. What now? Let’s get a translator, I thought.
Over the next few months, the neurologist put me on two additional medications, Neurontin and then Zonegran, in an attempt to control the seizures. Each time I ended up in the emergency room with complications from the medications. I knew my new neurologist was out of medications for me to try since I had tried every medication for petit mal seizures that existed. He also told me, “Your body doesn’t tolerate medication well,” which I knew.
When I called my neurologist to make an appointment, the nurse on duty suggested I try the medication Depakote. I was not certain if she had talked this over with my doctor.
“I just need to ask you a few questions before we go ahead with calling in the Depakote,” she said. “How much do you eat?” she said.
“Why?” I asked, in a leery tone.
“Well, the medication causes weight gain and if you eat a lot, you may gain weight easier,” she said casually.
Oh great, I thought.
“Do you want to have children someday, like ever?” she questioned.
“Um, yeah,” I said. “Maybe not right this second but maybe in the future. Why?”
“Well, the medication can cause birth defects,” she explained. “Also, the medication can cause thinning hair.”
“Wait. So if I take this medication I will be bald, overweight and have kids with birth defects?” I asked.
There was a hesitation on the other line. “Um… Possibly,” she finally said.
“Thank you for letting me know what the side effects of Depakote could be, but I am going to take my chances and find an alternative,” I said.
I was done with the medications. There HAD to be some other answer.
Finding the Traditional Naturopath
Desperate to find answers, I contacted a traditional naturopath in Maryland that a co-worker suggested to me. I wanted to try a natural health care route to see if there was something SOMEONE could find, some answer to the cause of the seizures I was experiencing.
In the meantime, I just adapted to daily life with 60-80 petit mal seizures a day. I was working in public affairs at the time. My boss noticed that something was off. She told me that when she was speaking to me I was looking right at her and then it was like I was looking right through her. At the end of her morning daily task meeting, she would look at me and say, “Make sense?” I would either say, “Yes, I caught everything” or “No, I just had a seizure, can you please repeat that.” This went on each morning every day. I am thankful that she was patient with me and also very observant.
Upon driving to my first appointment with the traditional naturopath, I was not nervous at all. I just hoping for some answers. At this point I figured I had tried everything so I was open to whatever she came up with. When I entered her office, I felt at ease. She explained to me that she did muscle response testing (applied kinesiology) and iridology to find imbalances in the body. She explained the process and then we started the assessment.
She had me hold my right arm out, while she used her right hand to point to certain areas of my body. As she got to certain points with her hand, she pressed my arm down. She explained that if the body has a strong response, the arm will not be able to be
pressed down. If there was a negative response in the body part that she pointed to, the arm would be able to be pressed down easily. After doing all of the muscle response testing and looking into my eyes, she came up with the conclusion that the seizures were caused by “too much yeast in the small intestine, causing a neurotoxin going to my brain, causing me to seize.” She put me on a yeast control diet, which entailed no sugar, no dairy, no gluten, no vinegar, and no yeast. She also recommended I take digestive enzymes, probiotics, a yeast cleanse, and other supplements to rebalance my body. I was relieved! Finally there were some answers! Although it sounded a little hokey, I was willing to do whatever it took.
Over the next few months I followed the diet and regimen to a T. I wanted to feel better and I DID. I will have to say initially it was really hard. Going through a sugar withdrawal is an absolutely horrible feeling. I felt like I was on an emotional rollercoaster. I felt happy one moment, then another I was crying with a friend on the phone, then hopeful. It was rough to say the least. Despite the ups and downs, I knew I had to find new alternatives to gluten and sugar. Each day I just took one meal at a time. I would look for alternatives wherever I was. I knew that if I tried to think about the big picture and never eating sugar or gluten again, I wouldn’t be successful with the diet. (I still continue this approach today with taking one meal at a time. I look for what I can substitute to eat healthier.)
After being on the strict yeast cleanse diet and supplements for eight months, I felt the petit mal seizures come less and less. I was still taking the Lamictal but was slowly decreasing it myself. One of the side effects of Lamictal is insomnia so I knew that when I couldn’t sleep at night, it was okay to reduce the Lamictal a little. Then, a month later the same insomnia would come back and I reduced the Lamictal again. In the meantime, I felt incredible! Also, my boss noticed that I was having the seizures less. I was able to catch everything she said during her morning meetings and I didn’t have to ask her to repeat the information again.
I saw my traditional naturopath once a month to measure my progress. She did the muscle testing and found that the yeast was decreasing. She would also switch my probiotics and yeast cleanse each month so the good flora in my gut would be varied and stronger. She was happy with my results and was glad that I was strictly following the diet. I did it like my life depended on it. I told her that I was still taking my medication but cutting it up into pieces.
Meeting with my Neurologist
After eight months of being on the diet and taking the supplements, I saw my neurologist. I was honestly so scared that he would yell at me for decreasing my medication. I sat in his office and felt my chest start to get constrict like I was about to have an anxiety attack. I took a deep breath.
“So are you still on the 400mg of Lamictal? he asked.
“Um…uh… no. I am not,” I hesitated. “I am only taking about 25mg and haven’t been having any seizures.”
I waited for him to yell, scream, throw something, even though I never even saw him raise his voice. I thought there was going to be SOME shame of some kind, some kind of angry response.
There was silence for a moment. I told him about the treatment from my traditional naturopath and the diet I was following. He didn’t get mad. He didn’t even raise his voice.
“I cannot treat you for that diagnosis, BUT whatever you are doing seems to be working,” he said in a matter of fact tone. “You have tried every single medication for petit mal seizures and you do not tolerate medications well.” He leaned back in his chair, thought for a second, and sighed. “Continue what you are doing. You may never have a normal EEG. I will give you the 25mg of Lamictal so you can continue that for the next few months. In the meantime, let’s schedule an EEG to see how things are going.”
I was in shock, elated, relieved, and proud. My neurologist not only listened to me, but he also took a chance when nothing else worked and let me continue this natural route. I had the EEG done and waited for the results. I wanted to hug him with joy!
Starting on the Natural Path
I went back to my traditional naturopath and told her what my neurologist said. She was glad I had such an open minded neurologist. Over the next few months, she did muscle response testing and kept seeing the yeast lessen and lessen until it was at zero. I ate sugar just to see what would happen and after a bit, she knew when I cheated because the seizures would start to return and it would show up through the muscle response testing. Ugh. Back on the strict diet I went! If being off of medication eventually meant that I would have to give up sugar completely, then I was willing to do it. It sounded absolutely horrible, but I was willing to take that path.
During a visit with my traditional naturopath, I had a revelation. All of a sudden it hit me. I could help other people who were going through the same thing! Maybe this is my life’s mission! How many other people are misdiagnosed or being affected by neurotoxins, causing them to seize? How many other people have an imbalance in their gut flora causing all kinds of issues? I told her my thoughts and she gave me literature about the school she attended, the Trinity School of Natural Health. She suggested I get my Certified Natural Health Professional certificate first. It would provide me with an education in nutrition, botanical medicine, iridology, flower essences, and other subjects. I did it. I signed up and started on my path!
The morning I started my first CNHP class in nutrition, I received a phone call from my neurologist’s office.
“Hello, Valerie, I just spoke to the doctor about your EEG results. You can safely stop taking your medication,” the nurse said warmly.
I was so relieved. I wanted to cry. I was done with being a guinea pig of seizure medications. No more side effects, no more trial and error of new medications, no more trips to the emergency room from seizure drug complications. It was done. I took a deep sigh. It was like a 40 pound weight had been lifted off of my chest!
On the Road to Health
Since that day in 2012 I have not had to go back on seizure medication nor have I had any grand mal seizures. I am careful with my diet and watch how much sugar I eat. I have noticed that when I included too much sugar or dairy in my diet, the petit mal seizures return, and when I stop all refined sugar and dairy, the petit mal seizures go away completely. Now, I am more strict about how much sugar and dairy I consume. I can’t say I am alway perfect each day but I strive to only include natural sugars and don’t eat gluten.
As far as supplements, I currently take probiotics and other supplements such as magnesium glycinate, a B complex, and fish oil to support my immune system and overall health. I also exercise regularly and lead an active lifestyle to take care of my physical health. I have also been able to get off of coffee by taking the Progressive Harmonized Fermented Vegan Protein shake each morning. I was a heavy coffee drinker so it’s pretty miraculous that I don’t drink coffee anymore! Also, I take care of my spiritual self by meditating each day, and look for other ways to reduce stress like yoga and staying active in my community.
I started at the Canadian College of Naturopathic Medicine to become a licensed naturopathic doctor so I can share my experience of having a second chance at life, and help others achieve their ultimate health and happiness. I know first-hand what it’s like to go the Western medicine route and then the more natural and Eastern medicine route. I am thankful to have had this incredible journey in health and wellness. It has made me appreciate the health care profession, made me a better researcher (when you are on so many meds, you HAVE to make sure you know what interacts with other meds, herbs, and foods), and will hopefully make me a great doctor.
Health Tips and Lessons Learned
I would like to share some lessons learned from being on many seizure medications and additional information from medical school.
- Research, research, research. Know what foods, supplements, and other medications interact with the medication you have been prescribed. Being a great researcher can save your life if you are aware of what interacts with your medication. I can’t tell you how many times I ended up in the ER from complications from drug interactions until I started doing the research myself.
- Healthy food = a healthy gut and brain. It has been proven that there is a gut-brain connection so what you eat plays a HUGE role in how you think, act, and behave. This also includes how your brain functions. Eating fruits, veggies, protein, healthy fats and carbs helps fuel your body with the necessary chemicals it needs to function optimally. If you don’t know what to eat, find a nutritionist who can customize a meal plan for you.
- Probiotics help support the gut and immune system. A probiotic adds healthy flora to our gut microbiome and helps to optimize brain function. Now I am not talking about just yogurt. You would have to drink gallons of yogurt to get the amount of probiotics you need each day to help increase and diversify your gut flora. Yogurt and fermented foods are great sources of probiotics but in addition to them I would recommend a probiotic supplement that can provide 40-100 billion probiotic strains. The more diverse your gut flora, the better for your overall health.
- Being vulnerable leads to strength. I was scared initially to tell my boss what was really going on with me and my health issues. I didn’t know how she would react and I didn’t want to seem like I couldn’t handle my job on top of my health issues. I learned that it’s ok to tell people what’s going on with you and let them in. Being vulnerable and letting people in allowed me to be stronger, have a more flexible work dynamic, and be a better communicator. (Thanks Brené Brown! Daring Greatly changed my life!)
Overall, I hope my story is able to help someone else. Like the woman who wrote about her son’s Lamictal toxicity, she saved my life. I know that all types of seizures are not created equal and can not be addressed in the same way. However, I do know that what we eat and how we take care of our gut plays a huge role in how we think, feel, and how our brains respond. Thanks for being on my journey with me! I wish you all health and happiness!
Missed part 1? Here is the link 🙂
2 thoughts on “My Story: Overcoming Epilepsy (Part 2)”
Wow! Thank you so much for this post. It gives me hope. I am a 20 year old student living in Toronto who has been suffering from petit mal seizures since I was a child. My child neurologist told me (when I was diagnosed as a child) that I would grow out of them, gave me medication and sent me on my way. Recently I’ve developed an intolerance to all medications, and had to come off it. Now I experience up to 30 seizures a day, which is wayyy more then I even had in the first place. Thank you again for this post, I was a bit worried on how naturopathy would help with my seizures, but I now have hope.
Sure thing! Glad my story gave you hope! Keep doing research! There are a few probiotics, supplements, and dietary interventions (like the Low-glycemic index diet) that helps to lower seizures. Best of luck to you!