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Brought Back from the Brink: LDN Helps Regulate a Life Consumed by Bipolar Disease

Lisa Nilsen
March 01, 2016

About Bipolar:

According to the US National Institute of Mental Health, bipolar disorder is "a brain disorder that causes unusual shifts in mood, energy, activity levels, and the ability to carry out day-to-day tasks. Symptoms of bipolar disorder are severe. They are different from the normal ups and downs that everyone goes through from time to time...People with bipolar disorder experience unusually intense emotional states...a drastic change from a person"s usual mood and behavior... People with bipolar disorder also may be explosive and irritable during a mood episode. Extreme changes in energy, activity, sleep, and behavior go along with these changes in mood..."

Substance abuse is frequently correlated with bipolar disorder, but far from helping symptoms, it is thought to elicit or prolong symptoms.

Typical treatments offered to patients with bipolar disorder include mood stabilizers, atypical antipsychotics, antidepressants, sleep medication, psychotherapy, and electroconvulsive therapy. Per the NIMH, "People with bipolar disorder are also at higher risk for thyroid disease, migraine headaches, heart disease, diabetes, obesity, and other physical illnesses. These illnesses may cause symptoms of mania or depression. They may also result from treatment for bipolar disorder."

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Lisa, how would you describe the course of your mental illness?

While I was quite a perfectionist as a child, my mental health issues seemed to really manifest around age 19-I developed extreme anxiety during college, so much so that I was unable to leave my apartment at times. A psychiatrist put me on a tricyclic antidepressant, my first of many medications. Soon after, on a trip to Europe, I suddenly found that I could not cope, and ended up being hospitalized for an overdose. Back in the U.S. two weeks later, I turned 20 years old in the psychiatric ward of a hospital; I had been admitted for suicidality. Over the next years of continuous struggle, I sought many doctors and psychiatrists to help with the suicidality and anxiety; at age 30, I was finally diagnosed with bipolar disorder. My 20's and 30's were a continuous revolving door of medications. I went from someone who didn't take any substances at all to someone who was being offered every type of pill... some of them make you high, some of them make you numb... eventually I started abusing all of them.

For example, if you have bipolar disorder you must be careful to get enough sleep (at least 8 hours), but I couldn't sleep, so they gave me a sleep medicine. But that sleep medicine is highly addictive and you're also not supposed to drink while taking it. I was drinking, though, so that was a complete disaster. Since bipolar disorder is highly correlated with substance abuse and addiction, the idea of giving someone with bipolar disorder pills that are easily abused or addictive doesn't make much sense to me.

What were the most troublesome of your symptoms?

I had severe anxiety, and was plagued by emotional meltdowns. It was not uncommon for me in the mornings to be on the floor crying. Crying because my makeup wasn't going on right or I couldn't find the boots I wanted to wear. I can remember breaking a curling iron because I was so mad that my hair wasn't turning out the way I wanted. The smallest things could easily wreck my mornings, and my poor children would be witness to an emotional tornado- yelling, screaming, and swearing. It was ridiculous behavior given what the triggers were, but I just could not control it. These intense reactions were physical- I could feel it happening, and even though mentally I was telling myself "this is ridiculous" or "stop it", I couldn't stop it.

But more than this, suicidality was always the most extreme symptom for me. It was a quick trip from "I don't like this" or "This is too hard" to "I don't want to be here anymore." No treatment in 20 years of treatment ever improved these symptoms.

What were your health goals and how close did other treatments get to those goals?

My goals were to prevent myself from committing suicide and to "level" me out. On some drugs I was not "acting out" but was also not myself either. I can't say I ever felt the benefit was worth the side effects. Some of them make you feel stoned, but not better. When I was highly over-prescribed in my 30's, I wasn't well. I had been prescribed lithium, propranolol (not appropriate for me), several other drugs, and was simultaneously drinking and abusing the medications that made me feel high. At my last hospitalization, I had so many chemicals in my system that, one physician told me, my blood vessels were so dilated it was a miracle that my heart hadn't stopped.

I could rationalize using the medications because they were prescribed by medical professionals, but they didn't help, and everything made me sicker either because they could be abused or had bad side effects.

What was the turning point in how you approached your treatment?

Things got so bad at one point that my husband was going to leave and people were threatening to take my kids away. That was rock bottom. If I hadn't had my five children, I would have been less motivated to get well. But I was going to lose everything, so I became sober. That was 6 years ago.

As part of that process, I wanted to use only treatments that I could not abuse. So I decided to only take lithium because I couldn't abuse it. I knew that if I took too much lithium, it would be toxic. Also, you can't get high off of it. So those factors kept me using it responsibly. I did my bloodwork, made sure my levels were correct, and understood the effects involved. However, it never really controlled my symptoms; I certainly didn't have any relief from my suicidal tendencies or depression. Additionally, I felt physically ill from it, even though I was within the therapeutic range; I would be sick until about noon every day. I knew I could not survive on lithium for the rest of my life.

So I made the decision with family support that I was not going to take even the lithium anymore, and focus instead on having all the elements of a healthy lifestyle. However, when I stopped taking the lithium, I found that it had contributed significantly to a deterioration of my health. I had been cleaning houses at the time and when I stopped the lithium, I physically couldn't do it anymore. I ended up having to quit my job due to severe fatigue. That was about four years ago now, and I decided I was done with pharmaceuticals. It seemed they were hurting me, not healing me.

How did you become aware of LDN?

In 2015, despite taking very good care of myself, and three years after detoxing from all the pharmaceutical treatments I was on, my body was still so ill and my mental health was fragile. I still could not control my emotional reactions and I was desperate for relief from the crushing fatigue, loss of strength and suicidal ideation. I had had enough, and I began making a plan to get electric shock therapy or transcranial magnetic stimulation, and to possibly shut down our family-run business.

However, my husband is a commercial fisherman and was going to be away for the summer. It was critical that I be available for the children and to maintain our business during an important part of our retail year. My husband begged me to try medication one more time in order to make it through the summer. I cried in defeat at having to face another medication, but went to see the doctor. He suggested LDN. He said it was not habit forming, you can't abuse it, and it doesn't have strong physical side effects.

Given your stance on taking pharmaceuticals, what convinced you to try it?

Because the big pharmaceutical companies were not pushing LDN, I hesitantly agreed to try it. I then went home and started researching it on my own. I watched an online video lecture from Dr. Phil Boyle in which he discussed a bipolar patient that quit lithium in order to get pregnant and started taking LDN. I appreciated the scientific soundness of his approach, and his experience with a bipolar patient who was trying to do what I was hoping to do. After seeing that, I decided to try it.

What happened when you started LDN?

On April 29, 2015 I took my first dose of LDN, and on April 30, 2015, I woke up. Like, woke up. I could wake up. I thought, "Wow, I feel really different." Then I thought maybe this was a placebo effect and I should give it some time. Within a week, I could see that I felt more differently than anything I'd ever felt before. The goal that all the doctors and medications had in mind-- for me to be level and calm inside-- I was finally experiencing that for the very first time.

What has been the greatest change you've observed in yourself since starting LDN?

While my physical health is still improving, the mental improvement is astonishing. I lost the obsession with suicide. I began to have mornings that allowed me the energy and resilience to do household chores and get ready for work without meltdowns. I'm not anywhere near as reactive as I was before. For instance, I remember in May (after being on LDN a month) after exiting a board meeting where there had been a conflict, I said to my best friend who had been in the meeting with me, "You know, I never could have gotten through that meeting before LDN." I would have gotten up crying or I would have run out of the meeting screaming at people. I was super-reactive. You know how people say "count to ten"? Before LDN, there was no counting to ten. Instantaneous anger. Instantaneous fear. Instantaneous everything. Now, I'm slower to be set off and don't experience things instantaneously. I have a little breathing time- a little buffer- and am not as easily set off. It doesn't sound like much, but it's huge if you can't do it. I had lived a lifetime with this kind of reaction and behavior that I couldn't control. With LDN, I experienced relief and resilience for the first time. It was a game-changer for me.

Now, if I'm not taking good care of myself or am worn out, I may say to my husband, "I'm having a hard time getting ready for work." It is nothing like the excruciating "I can't get ready" or "I can't get out of the house." I don't have that block anymore. I might be moving a little slow or be a little behind because I was doing laundry, or wanted to clean the kitchen before I leave. The difference is that I've been doing constructive things, as opposed to crying in my room for 3 hours.

In what other areas have you noticed improvement after starting LDN?

I have also had difficulty with my gastrointestinal system (confirmed gallstones that would put me in the fetal position with severe pain) and reproductive system (frequent endometrial cysts that cause severe abdominal pain, bleeding, growths, benign tumors and inability to function due to pain). I had lost one ovary already when I was young, and my continuing problems had been so severe at times that I had been considering hysterectomy. I decided against it due to the disruption of hormones that come with such a drastic surgery, but the pain was getting pretty constant. Since I started LDN, my gallstone attacks have disappeared. Similarly with the reproductive pain- I have not had pain in the 8 months since I started the LDN. I have not redone the ultrasounds yet to see if the gall stones and cysts/tumors have gone away, but I do know that I have not had any symptoms. I almost forgot that I had these problems!

You take a variable dose of LDN. Can you explain the how and why?

I began on 3mg but in the fall of 2015 (when my husband began to be home more often) I thought maybe I could try using a little less daily LDN when I felt better, and then if I began feeling fatigued or "raw" I could take more. I obtained 1mg capsules to allow me the flexibility to increase and decrease as needed. When I felt better, I took 1mg, but found that it was not enough for me. It seems like 2.5mg to 3mg is my typical dose, but I try to use as little as possible. Where I am in my menstrual cycle also makes a difference in dosing; I know that one week is going to be extremely challenging. That week I often feel like I'm not going to make it, especially the day right before and right after my cycle, which are the worst. My doctor advised me to bump up my LDN dosage that week. If you can predict when you're going to have a harder time, it makes sense to give yourself more support during that time.

Are you satisfied with the progress you've made on LDN?

It's been a pretty steady improvement but I realize that I may have had unrealistic expectations. When I began taking LDN and experienced such improvement, I hoped that within a year my body would heal and I would be able to start skating competitive roller derby again. Now that I've been on LDN for 8 months, I get a little emotional thinking that maybe I will never be stronger than I am now...that this is as good as it is going to get. But my husband reminds me, "This is waaaaay better than what it was!" So, I find that it's a process of settling into a situation that is much improved from when I went in desperation to the doctor in April.

Instead of saying, "I want more improvement!" I try to say to myself, "I'm so lucky, right now, to be feeling as good as I feel." I'm so fortunate that I can wake up in the morning, go to work, clean the house- things that there was no way I could do back in April. But a little bit of me feels emotional about it because I'm a pretty good skater! I feel bad that maybe I'm never going to go back to competing, but it's really hard on the body. I have to remind myself that I have five kids, I own a business, and you can only do so much and be so much. I find other ways to stay involved, such as coaching for the junior roller derby league.

What do you think is the most important thing for people to know about using LDN?

I sincerely believe that had LDN been an option for me when I was much younger, before I had used so many mainstream medications, my body would not be as damaged as it is (this has now become an equal struggle to the mental one).

I think about a young family member who was recently diagnosed with bipolar disorder. What now? You get diagnosed and start research your options, but these kids only see people my age still struggling with the disease: not improving, not getting better on the available treatments. How can they be hopeful? It's so important to me that the new generation know that there is another way. I think the most important thing for potential users is to consider LDN as first resource, rather than a last resource, after having tried all the other medications that have known severe side effect profiles.

In my opinion, LDN is the best possible first step, while someone is still young and relatively physically healthy. However, it's also important to emphasize that LDN shouldn't be seen as an independent fix-all. You need to be holistic in order to get the most benefit. I focus on a healthy diet, sleep, meditation, breathing, tapping, prayer, and other things I had learned from various treatment centers- they are what I call my "coping toolbox." Taking care of yourself is also critical.

What is your closing message to readers?

I would just like to say that I hope sharing my story will give people enough information to know that there is a possible medication (the best answer I've ever found) to a really serious struggle. If I hadn't found LDN, I don't know how I would still be here. For sure, I don't think I'd be here in the sense that I am now. If my story helps one person, if one person doesn't have to die, I will be happy. I cannot sufficiently express the hope, relief and gratitude of knowing that maybe, just maybe, someone won't have to suffer like I did.

More about Lisa:

I am a wife, a mom of five, former competitive roller derby skater, and owner of a gift shop/skating equipment store called “Skate of Gear.”

I lives with my family in Peterberg, Alaska. I have struggled with intractable mental health illness (bipolar disorder) for most of my life and it is my hope that sharing my story with gives hope to at least one person with bipolar disorder.

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