Friday, September 4

A Lasting Cure: I Used to Be Bipolar

This post is long. But it's been long in coming. A miracle like this has to be shared.

I used to be bipolar. Proof enough for those who understand is here on (G)MG, where many posts were written in the thick of depression or on the peak of a hypomanic high.

But I'm not bipolar anymore. And while people sometimes ask me what cured me, the reality is that, while the process itself was intensive and hard, it's only thanks to God that it happened at all.

I was diagnosed with Type 2 Bipolar Disorder the summer before beginning my MBA at BYU. I had gone in for a diagnosis of Autistic Spectrum Disorder (a long story) to a specialized clinic in Salt Lake City with the best-of-the-best in adult autism, and my psychiatrist explained that many high-functioning people on the spectrum have comorbid mood disorders.

I balked at her statement. I didn't have a mood disorder... because that was a really bad thing, right? I had good days and bad days, but everyone has good days and bad days. You do your best, don't worry about the things you can't do, and enjoy life when you have the chance.

She offered to explain the mood spectrum, and I was happy to listen. She explained depression, dysthymia, double depression, hypomania, and then got to bipolar. Simply put, anyone who has experienced a significant and lasting honest-to-goodness real depressive episode that isn't connected to outside experiences as well as a hypomanic or manic one has bipolar.

Had I ever considered suicide? Yes. Many times. But that wasn't really an issue, right? I knew that suicide was wrong. There were times that I avoided walking over bridges or up spiral staircases because of the intense desire to jump off and die or at least permanently main myself. And it wouldn't work anyway. I spent months as a teenager praying for God to kill me in my sleep, then got my patriarchal blessing, which said my life would be "extended" and promised that I'd return to full health if anything happened to me. Talk about exact opposite of what I had wanted to hear. I stopped praying that I would die young and resigned myself to living for as long as I had to. My thoughts of suicide, while common, were just pipe dreams.

My psychiatrist didn't get that whole story. She simply explained that if I had frequent or recurrent thoughts of suicide, and didn't have traumatic life experiences that could account for situational depression, that was a solid proof of major depressive episodes. That was it.

Hypomania or manic episodes are harder to characterize. It's like your brain just works better. Your body works better. You're smarter than you should be, happier than you should be, more able to juggle the things in life, more creative... In a manic episode, your brain requires itself and you can lose your sense of personal morals and cause-effect relationships, and honestly believe you can fly, which makes manic episodes potentially dangerous. Hypomanic ones have many of the pros but fewer cons.

I had definitely had those as well. I couldn't honestly explain how I worked on a thesis, started two books, juggled a job and calling in the elders quorum presidency, worked two shifts at the temple, ran a running club and intramural team, performed in a play, took 25 credits at BYU, and still had plenty of time for social activities all in one semester. It seemed totally normal to me. But my normal was not normal.

I refused medication because I hate medication, and because I didn't want to give up my highs. And because the medication wouldn't really be a cure. But what my psychiatrist said at the end stuck with me. People who have Type 2 Bipolar - me - which includes hypomanic episodes but not manic ones - usually see the number and length of depressive episodes increase with time. Maybe right now life was ok, but it would cause problems in 20 or 40 years... and I wouldn't be ok. I think I must have been hypomanic when I saw her, because that didn't faze me.

A few months later, I began a journal of my feelings... and found that I was experiencing depression up to 4x each month, for up to a week at a time. I also realized that I subconsciously never listened to any music, never read any books, and never watched any movies or plays because they could so easily trigger depression. Depression ruled my life. Everything I did was either to avoid getting depressed, keep depression from setting in, distract me from depression, or keep me from wanting to kill myself. During my highs, I made plans of how to keep myself busy and out of depression. During my lows, (when I could) I forced myself to write and focus on improving the quality of my life and goals.

I went on Lamictal (Lamotrigene) a short while later. It spaced out my depression from 4x each month to 1x each month. But it had side effects. I stopped dreaming at night. I felt like a piece of me was missing inside.

I didn't know what to do.

I went home to Chicago to buy a car, and while I was there my dad gave me a priesthood blessing. In the blessing, he promised me that, in time, I would "be healed" of the difficulty I faced. 

What?

Bipolar is permanent. It's a brain disorder that medication can't even keep under control. You can't take antidepressants and even the medication doesn't keep it from happening. It will just get worse and worse, period.

Autism is permanent. It's a literal different wiring of the brain to focus on different information processing patterns. My amygdala doesn't function to give me understanding in complex or vague situations where others do, and the processing part of my brain compensates by handling dozens of extra variables.

Same-sex attraction is permanent. I've talked with people who got happily married and fell in love with someone of the opposite gender, but it's a miracle each time.

As soon as he finished, I turned and confronted him. He explained that the phrase had come, and he said it. He didn't feel like it applied to same-sex attraction, but to the bipolar specifically and less so to the autism. He's not a medical guy... and he still didn't realize the extent of my issues. But the blessing had said it, and he was convinced it would happen. And I wondered how it would.

Two months later, I was online, looking up my medication when I stumbled on a diet for epilepsy. Lamictal is an epilepsy medication that works for bipolar, as many epilepsy medications do. I read somewhere that some doctors think that bipolar is epilepsy confined to specific parts of the brain - that micro seizures cause the mood swings. And that clicked with me. I could feel when depression was going to come, before it did... just like people could feel seizures before they happened.

The diet was called the Ketogenic diet and was based off studies done in the 1800's and early 1900's. During that time, people with major epilepsy were hospitalized. If they kept having seizures, they obviously couldn't eat. And an amazing thing happened: after a few days of not eating, the seizures would suddenly stop in almost every patient. They would eat again, and the seizures would start all over.

It was soon called the starvation diet, but was only prescribed in severe cases for short times, because you can't not eat for forever.

One doctor thought that certain foods could be triggering the seizures, and began giving only certain foods to his patients as they recovered. Without a knowledge of proteins, carbohydrates, fats, and other factors, he wasn't able to exactly pinpoint the issue. But he found that grains, breads, fruits, vegetables, milks, beans, and similar products would cause seizures, while meat and some nuts would not.

Years later, it was found that carbohydrates - in all forms but fiber and from all sources - were the culprit. Why? Doctors still don't know. But the diet was prescribed for epilepsy from that time on, and people who followed the diet had major reductions in seizures. Those who followed it faithfully for a few years were sometimes cured for life.

Then something happened.

Another doctor found that ingesting small doses of lithium could dramatically reduce seizures in most patients. The pill only had to be taken once a day, and nothing else had to change. The brutal diet disappeared overnight in favor of the miracle pill, and within a few decades, was gone from the medical schools and doctor's memories.

The diet gained a new resurgence when an actor with a young son faced potentially debilitating surgery for his child with epilepsy. Medications weren't working. Other surgeries hadn't helped. And his 2-year-old wasn't going to live a normal life, or even a decent one. Scouring medical texts, he found a mention of the diet, and convinced a doctor to help him. Within weeks, the seizures were gone - something that had never happened before - and after a few years, his son was completely cured and could go off the diet with no seizures ever again.

Today, the Ketogenic diet is prescribed by very few doctors, and usually only after multiple failed attempts with medication and surgery, and only to children under the age of 10-12. It's often administered in a hospital or sometimes with at-home care, through a feeding tube that provides exactly measured nutrients.

I found one study ever that mentioned the Ketogenic diet and bipolar. All the participants dropped out, even the one who had stayed the longest and saw the biggest positive effects.

The potential to cure is only partial. The statistic I remember is this: 90% of people will experience a 50% or more reduction in seizures after a few weeks of faithfully following the diet. 50% will experience zero seizures on the diet after a few weeks. For those who experience complete reduction, 50% may be cured by following it without any relapses for at least 2 years.

So my chances were 25% at best.

But something inside me told me I needed to do it. I contacted a nutritionist at the University of Utah medical center. She said that her patients all got their diets from prepared formula. I contacted a nutritionist through BYU who told me that I was being stupid. She also told me that being vegan was stupid and there was no way to do the Ketogenic diet and be vegan.

Ironically, the only professional who supported me was the BYU psychiatrist who had prescribed me medication. She told me I should try it if I felt like it could work.

So I did.

The Ketogenic diet is not easy. As an adult, I focused on eating fewer than 10 grams of carbohydrates each day, from all sources, and ate/drank medium chain triglycerides (fractionated coconut oil) for 30% of my calories. Carbs includes vegetables, grains, maltodextrin in "calorie-free" foods, fillers in multivitamins, and the carbs each week when taking the Sacrament. Being vegan made it both harder and easier. Easier because I was already used to saying no to almost everything people offered. Harder because most Ketogenic diets consist of lard, cream, eggs, and meat.

The first few weeks are hard. Then it gets harder. Drinking fractionated coconut oil made me have to vomit the first 20 times I did it, no matter what. Food without sugar or starch gets old fast. And then it finally gets easier. I had done my research, and I fast-forwarded by beginning my diet with a 7 hour running/biking/swimming session until I felt like I had hit ketosis.

I used ketone test strips in the beginning to make sure I was creating ketones. I cut the strips into thirds because they seemed expensive, and they still worked just fine. I tested my ketones in the morning and at night, and kept track of them and what I ate for about a month. Then I stopped testing and just kept going.

I stopped seeing my psychiatrist after three weeks - I went off my medication because I stopped having mood swings. And my dreams came back, but they were of eating whole-grain bread. Honestly. I thought about eating greasy, gooey orange rolls one day when they were offered.

I was always hungry for food I couldn't eat.

It got better. But I could never, ever cheat. And that was hard. I made pasta out of Konjac powder, looked up the actual milligrams of carbs in every food I thought about eating, said no to literally everything people offered, and ate seeds, rare nuts, some tofu, olives, and fractionated coconut oil every day.

If I had had a doctor who could test me, I would have tried other things too. Extreme exercise (running/swimming for 5 hours) can also cause ketosis by using up all the glycogen in my body, and had worked in the past to keep bipolar episodes from hitting with full force... but was it worth cheating and then exercising if eating carbs would still affect my brain and ruin the lasting effect of the diet? No.

Doctors aren't sure why the Ketogenic diet works for epilepsy. Some think that it's from a higher concentration of energy - ketones have 5 Calories per gram, while carbs have 4. Some think the acidic ketones displace excess sodium, similar to lithium, but that doesn't explain lasting effect. 

The brain switches over to ketones over a Very. Long. Time. While the rest of the body can switch in seconds or minutes (the feeling of "hitting the wall" while running a marathon is going into ketosis), the brain continues to request sugar (created by gluconeogenesis, created by processing glucogenic (vs Ketogenic) proteins). As the level of ketones in brain fluid increases and then stays consistently high, brain cells switch over to preferentially using ketones, and the need for sugar decreases. After a year on ketosis, something like 70% of the brain has finally switched. My guess is that the whole brain has to switch over, then have time to use the extra ketone energy to somehow heal damaged pathways or something similar, to effect the lasting cure.

I won't say that the diet was easy. It was miserable. I had no physical energy and even less strength. But I found ways to have fun. One day I made a vegan, low-carb "cheesecake" from a crust with flaxseed, stevia, and cinnamon oil, a filling of tofu, some nuts, and lemon oil, and a topping of strawberry flavoring mixed with xanthan gum. It still counted as maybe 4 or 5 carbs, but it was awesome.

Then my brother got acute leukemia.

I was in the second year of my MBA program at BYU, and had taken a job as a teaching assistant and another as a research assistant, along with helping to manage Nature's Fusions (my essential oil company). I was taking 20 credits, which isn't allowed, but the secretary never went through with her threat to drop one of my classes. And my brother was hospitalized at LDS Hospital in Salt Lake.

I drove to the hospital every afternoon after school, stayed there until midnight, and drove home for 2 hours through the I-15 Core Project construction. I ran out of food, and I wasn't eating. I finally broke down and called the relief society president of my singles ward and asked if people could bring us food. That night, there were containers of food in my fridge, with names on them... and it was food I could eat. I knelt on my kitchen floor, crying, more grateful than I had ever felt in my life.

I stopped following my diet soon after. People brought food, but it was impossible for all of them to understand what I could eat. And I couldn't focus on myself, two jobs, my company, school, and my brother. So I took a break, fully aware that I'd have to start over again.

Almost a year later, when my brother was cancer-free and I was close to finishing my MBA, I started again. This time I began with a 5-day fast, because I knew I still lacked the strength to exercise for long enough to make a difference, and because fasting is soooo much easier than taking carbs out. The diet was easier because I already knew how to eat, but it was still miserable.

During all that time off the diet, I had two bipolar mood swings - and those were late in the months during my break. I felt like that was proof that it was working. On the diet, I had maybe had one mood swing, a few months into the process.

I followed it again for over a year. And then I woke up one morning with a deep, powerful, peaceful feeling that I could stop. I kept going for a couple months, but I felt like it was time to be finished. I set a date, and on that day I made homemade hummus. I didn't eat much of it - it didn't feel like it was worth it. And when someone offered me a drink of juice, I said no without even wanting to try. My desire for sugar and starchy foods had disappeared.

That was almost a year ago.

And now I'm not bipolar.

I haven't had a mood swing in a long time. I haven't felt depression at all. But I also haven't had the hypomanic highs.

In total, it's been a good thing. I was able to do some things I loved - start another business called "The Soap Factory," start and run an a cappella group called Grace, find and keep a best friend. Just finding a best friend has been worth everything else - honestly. With the bipolar gone, though, now I'm trying to figure out my life.

The harsh reality is that for decades of my life, everything was based on the cycle. When I was depressed, I did this. When I was hypomanic, I did that. I was a rapid cycle bipolar, so everything got done on time - I just waited for the time in the cycle. Laundry only ever got done when I was hypomanic. Blogging usually happened when I was depressed - and when I wasn't, it served to help me find meaning in the constant flux and chaos. Goals and plans were made in hypomania. Those same goals and plans were trimmed to the essentials in depression. Working out happened in hypomania because I wanted to, and depression as a major coping mechanism. Playing the piano and playing video games were other coping mechanisms that happened only in depression. I was outspoken and friendly in hypomania, and quiet and contemplative in depression. And nothing - literally nothing - happened in-between.

Now I'm in the in-between for forever.

I'm no longer bipolar. The cure has been miraculous, and I have 70 more years of life to reap the benefits. 

I say I'm no longer bipolar - no mood swings - but there are still some things left behind. I still believe that I'm both superman and less than dust, as I always have. Only people with bipolar have ever understood - in my brain I am both simultaneously. During mood swings, the feeling of total worthlessness or total awesomeness would be stronger than the other. It wasn't like depression "hit" me - it just pushed past and overwhelmed me. Now, they're both simply there - coexistant in a way that I've never been able to explain. They don't actually go together. It's not like the feeling of being powerful with God and also small in His sight. These are completely opposite and opposing in every possible way, and each one has powerful aspects that they lend to who I am. Simultaneously, they're in my mind... and I think they're there to stay.

I'm still autistic, and still attracted to guys, so life isn't a sugar-free vegan cakewalk, but I no longer feel the overwhelming sadness of depression, the desire to end my life, or the intense, excruciating emotional pain that won't respond to any treatment. I no longer pull away from people or cut ties in relationships.

In exchange, I have piles of unwashed laundry... and I'm relearning how to live my life.

12 comments:

  1. David, this is fantastic news! Congratulations on this huge milestone. This was clearly not an easy path but you've forged onward like a champion.

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  2. Wow! What amazing strength and faith it took to eat that way and live that way for the time that it took. I am so impressed and proud of you!
    ~Wrylon

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  3. Found this through a friend on FB. Read the whole thing. Thanks for sharing. We're all in this together, and your personal success makes me feel like the world is a better place.

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  4. This is a fascinating post and fascinating that you found the diet connection for bipolar! Happy for you!

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  5. What a miraculous accomplishment, David! Miraculous because God led you to it and empowered your desire to stick with it. And an accomplishment because of your great faith, even as you doubted the blessing that promised healing, and the personal stamina it took to commit fully to the process. Amazing grace. Your descriptions of bipolar mood swings and how you dealt with the cycles (and, now, the void it has left) reminds me a great deal of my own experience with depression, anxiety and PMDD. Thanks for sharing your life. It's been a while since I've tuned in but I'm glad I did, and that your are doing so well :-).

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  6. Well, God bless you, son. This is quite stunning. My (Catholic) mom, the nutritionist, made me do this diet at the age of 16 in order not to end up like her (bipolar) LDS brother. Within a week, I was a complete homi/suicidal disaster - which I suppose implies there might be something to it. Seems like you have an incredibly high level of self-discipline, a sine qua non for success in this treatment. That's something I didn't have back then (or now) and speaking as someone who holds free will to be an indispensable component of the definition of acting human, I hardly believe it were possible any more. Speaking from the midst of drug-muffled hypomania (and with sincerity), I wish you the best. Perhaps the all holy Lord will grace me with the requisite self discipline one day.

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  7. David: I am happy for you. Congratulations. May the Heavenly Father blless you always.

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  8. Oh, David. I want to just keep reading your blog (and I will, but I just barely found it and have to do a bunch of things), but before I pause and run to take care of my family I just had to leave a comment for you. I can feel your love and deep sincerity in each post. I have also suffered with bipolar and been cured (some diet change, some supplements and some other healing). I feel so fortunate to have been healed. I am actually looking to do the ketogenic diet for other health issues, so I'd love to hear more from you about how you do it. I just want to meet you. I feel like I know you. I respect how you share your unique and beautiful message with the world. Keep letting your light shine and just know that you are blessing people. I can't speak for others, but you have already blessed me so much. <3 Bless you, dear brother!

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  9. This is a very interesting post. I gotta do some praying and pondering about this subject- not your experience- I don't doubt it, but what my role with this information is within my own family. I am sure it will stick in my brain for a bit. Thankful for direction from the Holy Ghost in matters that are complex.

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  10. Hi, David! I’m sure you don’t remember me – but I knew you many years ago when we lived in your ward and we were friends with your folks. You were friends with my son and we even visited each others homes frequently! Anyway, I stumbled upon your blog and am so glad that I did! Our family just suffered a terrible tragedy. My son’s wife had suffered with being bipolar since her teen years along with multiple physical issues. I tried so hard to help her through clean diet and nutrients... very similar to what you describe. Unfortunately, she was unable to follow it for many reasons. I was so hopeful that it could really make a difference for her. For reasons unknown to us she decided she couldn’t go on any longer and took her own life just over a month ago. We will never “get over” her loss – she was so well loved! I just wanted you to know that I am so very amazed and proud of the self-control and commitment that you show to take responsibility for yourself and your health. God bless you as you continue this journey. You will be in our prayers!

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  11. This is pretty remarkable and I am a little curious if you have returned for any testing to see what changes they can see in your brain. It may seem unnecessary since you feel the difference yourself. It would be fascinating to see what physical changes they would see.

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