Treatment-Resistant Bipolar Disorder

Treatment-resistant bipolar, also known as med-resistant, is something that most of us know too much about. Sadly, it’s extremely common. Being diagnosed as treatment-resistant generally depends on the number of medications a person has tried during the phase that individual is in. Many individuals have been through all sorts of different medications without much success. And then of course, if a person finally finds a medication that helps even a little, it comes with side effects that are too much to handle. I have been considered treatment-resistant by my doctors many times throughout my diagnosis. I have taken so many medications that I’ve lost track of them all. I’ve even lost track of the horrible side effects. I know that for me, Abilify sends me into a huge manic episode, Depakote causes me to lose my hair, and I gained 80 pounds on Risperdal. Those are just a couple examples of medications that I couldn’t handle.

Treatment-resistant doesn’t mean that there’s no answer; there are several individuals that are treatment-resistant that have gone into ‘remission’ for multiple years. I am one of those individuals. Somehow, I was able to live a regular life, work a full-time job, and have a full-time social life. I don’t know what happened or what changed, but after a little more than 2 years, something changed. I was still taking my medication and seeing my doctors, but it was as if I was a ticking time bomb. Then I exploded into such a massive manic phase that I had to leave my job and go live with family. I haven’t been stable since that time, but I do know it’s possible. Sometimes I wonder if I can ever get back to the place in life that I was at before. Honestly, I don’t know if it will or will not happen, but I haven’t given up.

There is always hope, even for those that are treatment-resistant. New treatments and medications are always coming out that could help. Sometimes, a certain combination of medications or treatments is the key to remission. It’s not easy to be patient, or willing to try new treatments, but you never know when one of these new methods will be the key to our health. I am always willing to research and usually try new treatments and medications. I am doing ECTs, electroconvulsive therapy, every month (I’m doing the maintenance treatments at this point), and I am doing a rechallenge of the Clozapine medication. The ECTs helped me get out of a major depressive episode. The Clozapine is supposed to help take away my suicidal ideations; it’s too soon to tell how effective it will be. My conclusion regarding treatment-resistant bipolar is that you never know when some new treatment or medication is going to help; don’t give up before the miracle happens.

What Caused My Bipolar Disorder?

No one really knows what causes bipolar disorder, but there are several known possibilities. Some of the circumstances include genetic inheritance, brain chemistry, life events, substance abuse, and childhood trauma. I’ve always wondered what caused my bipolar disorder and if it was it something that could have been avoided. In my case, and in most cases, there are multiple situations that cause bipolar disorder. For me, I think that all of the known possible causes had something to do with the reasons for my bipolar disorder.

Genetic inheritance definitely had a part in my bipolar disorder. My father had a brother and a sister that both had some form of mental health disorder. I don’t know what the diagnosis was, if any, but I do know that they used to and still do struggle with mental health. There is also at least one person on my mother’s side that deals with depression. Having family members that deals with mental health makes it more likely that I would have some form of mental illness because it’s something that could have been inherited.

Individuals with bipolar disorder also often have different brain chemistry than those without bipolar disorder; their brains often work differently allowing them to be predisposed to both manic and depressive episodes. The brain structure of those with bipolar disorder is different from those without bipolar. This may help doctors diagnose and treat bipolar in the future.

Certain life events can also be a cause of bipolar disorder because of the stress that they cause. I had a fantastic childhood with loving parents. I felt loved every moment of every day. The only life event that could have had an effect was the diagnosis of my father’s cancer when I was 12 years old and his death when I was 18 years old. It was very hard for me; my father was my best friend. Stressful life events can cause manic or depressive episodes; they can also influence kids, such as myself, to turn to drugs or alcohol.

Substance abuse most likely played a huge part in my mental health diagnosis. I did anything and everything that was available; all I wanted to do was forget how I was feeling. I used drugs and alcohol to the extreme from the ages of 12 to 19, when I got sober. Gratefully, I’m now coming up on 12 years sober, which probably makes a big difference in the treatment of my bipolar disorder.

Childhood trauma is also a factor for many. The traumatic events I experienced were in my teenage years. I lost my father at age 18. I was also in a physical and emotionally abusive relationship from the age of 17 to 18. That year and a half was difficult for me; it has also made the rest of my life exceptionally difficult. I still have many fears and am hesitant to do a lot of things because of events that occurred during that relationship.

Over the years, I wondered what happened; how could such a happy childhood turn into such a difficult life. I had a wonderful childhood; I was pretty popular in school, I had a great relationship with my entire family, and we were lucky enough to have more than necessary. I used to wonder if maybe I did something differently in my life, then I wouldn’t have ended up with this diagnosis. I used to think that it was my fault, that I was to blame for my mental health problems. However, after writing this post, I realized that I experienced most of the possible circumstance that could cause mental illness. It wouldn’t have mattered what I did, I was bound to end up diagnosed with bipolar disorder. It’s no one’s fault. No one is responsible for their mental health diagnoses. What we are responsible for is helping ourselves get better over time. We can take control of our disorders; it’s not easy, but it is possible.

How Much Longer…?

Do you ever wonder if you can make it? Even if it’s just for one more day, can you handle life that much longer? It seems that no matter what you do, everything is working against you. If you’re anything like me, it’s a daily burden that you have to deal with. I’m constantly asking myself, ‘Am I okay? What if…?’ Sometimes, when I’m able to think positively, instead of asking myself, I tell myself, ‘ I’m okay. Everything is good.’ I say these things even when I know they’re not true; I guess I say them hoping to convince myself that they are true.

I constantly worry about pretty much any situation you could think of. I’ve had some people tell me, ‘Don’t worry, just relax’, and honestly, that makes me want to punch them in the face. Do they really think I would choose to live like this? Would I honestly decide to have anxiety attacks every day and almost never feel safe or secure? Nobody chooses this life; it’s not enjoyable or manageable. Living without control over your own moods is torture. These types of symptoms, the constant anxiety, not feeling safe, and questioning if life is worth it, tear apart a person’s life piece by piece. My support system is the reason I keep going, but it’s not easy. I just want to give up most days, but for some reason, I don’t, I never give up.

I compliment those individuals who are able to live with these symptoms and the other bipolar and/or PTSD symptoms and continue living their lives entirely. Individuals that can go to work, take care of their families, maintain a home, and manage their symptoms are impressive; I admire these people. That used to be me. I had a full-time job, a full-time social life, and I maintained my own home. I miss being able to do that. I’ve been on disability since 2009, and I wonder every day if I’ll ever have that type of life back. Even my therapist is unsure if that will happen; he said so himself. He says that I’m working on learning to deal with these issues better.

I hope I’m not the only one that feels this way; I feel lost enough already, I don’t want to be lost and alone. Although at the same time, I really don’t want anyone, even someone I don’t like, to experience these situations and emotions. All I can do is to stay positive, even if it’s fake, I just think positively. I pretend that things will be okay; if you think something enough, eventually it could come true.

Bipolar Extremes: Finding Balance

I tend to be quite the extremist when it comes to my mood swings. I either have so much energy that I can’t stop cleaning or I can barely get off the couch to get anything done. I will admit that I somewhat enjoy the first few days of my manic episodes. I love the fact that I can get so much done; my house looks beautiful, dinner is always ready for my husband, I find it easier to run errands, I call my family and friends to catch up, I need less sleep, and some things are less anxiety provoking than usual. I love all of that; if only it would stay that way, but it never does. I run out of things to do, I start pacing and shaking, I make random and inappropriate phone calls, and I spend money more freely than I usually would; these are just a few examples of my bipolar mania. Often, when I’m manic, I still feel pathetic, worthless, and insignificant, as well as deal with suicidal ideations. I think that some of these episodes are considered mixed episodes because of how badly I feel about myself; mania generally has feelings of elation.

As my manic episodes come to an end, I tend to crash hard. All of the sudden, I’m sleeping way more than I need, I have a hard time getting out of bed or getting up to do just about anything, and my feelings of worthlessness and uselessness grow even deeper along with my suicidal ideations. I never get a break from feeling horrible about myself, no matter what type of episode I’m in. While I like the productivity aspect of the mania, there is not one part of the depression that I enjoy. I wish there was a way that I could feel okay and still be productive, but I haven’t found one yet.

What I really want is to find some middle ground somewhere. I must have experienced it at some point during my life, but right now, I can’t remember any moment like that. Maybe it’s just because of my memory loss from ECT. I know that I have come out of a few major episodes before, but no matter how balanced I seem, there is always something going on in my head telling me how pathetic I am. I just have to trust that I have had balanced times in my life. This is where positive thinking comes into play. It’s not easy to be positive, but there are several techniques that I use to help me through these difficult times. None of these techniques are easy to do, but they are vital to our health.

Use these techniques to get past the bipolar extremes and find peace and balance in our lives:

Remember there is always hope; believe in that hope. If you can’t, having someone else believe for you can help. When I can’t, my husband and mother believe for me.
Reach out to your loved ones and caregivers.
Find a support group that you’re comfortable with.
Be 100% honest with your psychiatrist, otherwise they can’t help you.
Take your medication as directed, otherwise it won’t work properly.
Write down the different methods that help you feel better and worse so you know what to do and not to do in the future.

I Finally Accept Who I Am Instead Of Hiding It

I’ve been living with bipolar disorder since I was 14 years old, in 1999. It has never been easy, but I’ve made it through with the help of my family and friends. I turned to drugs at age 12, which probably triggered the beginning of my episodes. I started seeing a psychiatrist and began taking medication in 1999. The best thing I had going for me was that I was always honest; I told on myself any time I did something I shouldn’t have. I have always felt the need to be honest. I was truthful about how I was taking care of myself. I always took my medications as prescribed, I went to every doctor’s appointment, and was honest with my psychiatrist/psychologist about the drugs I was using. I was even willing to admit myself to a psychiatric unit when necessary. I did these things, but was never happy about it.

I was never really ashamed of my diagnoses, but I wasn’t willing to tell people. I know it was mostly obvious, especially since I was a cutter for many years, but it wasn’t something I wanted to shout from the rooftops. I remember feeling worried what my friends and family would think. I told my immediate and extended family, and I received unconditional support from everyone. I even had a few family members take the NAMI Family to Family classes so they could better understand what I was going through.

After I got sober in 2004, I began a life across the country. I got a great job and I even received a fantastic promotion after 1 year. I kept my mental health diagnoses mostly to myself. I was concerned of what my co-workers and my friends from the 12-step program I attended would say. I had a couple experiences where I felt looked down upon when people found out about my mental health, however, I think most of it was in my mind.

In 2009, I had an episode that was so extreme, I had to leave my job, move back in with my mother, and go on disability. At this point, I couldn’t hide anything, and I decided it would be too much work to try. As it turns out, most people didn’t even think twice about it. I even found several people that lived with the same things, these people became my friends. I became comfortable with my diagnoses; now, I don’t care who knows about my mental health. If someone thinks differently of me because of my mental health, then that’s their problem and their ignorance. It has taken a long time, but I have finally become comfortable with my diagnoses. Even though I struggle daily due to my mental health, I also feel that it has made me stronger.

It may have taken me many years to become comfortable with this part of who I am, but now that I have, I can spend my time and energy working on myself instead of trying to hide myself. Becoming secure with my diagnoses has allowed me to truly live my life. To manage my mental health I continue to take medication as prescribed, follow-through with all treatments, be honest with my friends and family, try to stay productive, find things I’m passionate about (I enjoy cooking, cleaning, and hiking), try to keep on a schedule, and try to get a good night’s sleep. None of these things are easy, but if I regularly work towards these goals, life becomes easier.

I am blessed with family and friends that support me no matter what. My husband, mother, and other family encourage me to do things that are healthy for me. If it wasn’t for them, I probably would never leave my house or see any friends. It is because of their love and support that I can accept myself for who I am. My bipolar disorder and other mental health diagnoses are only a part of who I am, they do not define me or dictate my life.

I Choose a Clozaril Rechallenge

Two weeks ago today, I say my psychiatrist, and we discussed my options for the next treatment method that we would use. This was not the first time we had this discussion. The topic began in November 2015. I kept putting off the actual decision making. My options began as IV Ketamine, MAOIs, or a Clozaril rechallenge. First, I wanted to do some research and then I wanted to discuss it with my mother and husband. Then we decided to do genetic testing and I wanted to wait for the results of that test. The genetic testing showed that I was unable to process folic acid, so I started Deplin, a prescription for L-methylfolate, which allows me to process folic acid. Deplin is known to increase the benefits received from other psychiatric medications. It takes 4 – 6 weeks to see the full effects of Deplin, so I wanted to wait to see how effective it would be for me. Today is the end of the sixth week. While I can see some improvements, such as my productivity, other aspects have had no improvement, like my auditory hallucinations, suicidal ideations, paranoia, and worthlessness to name a few.

I decided that I do need to try another form of treatment because what I’m currently using is not working well enough. I chose to do a Clozaril rechallenge. I am aware of the risks, but I feel comfortable because of the safety measures in place such as the weekly blood work. The first time I tried Clozaril, I lasted approximately 2 weeks before I got a fever and had to stop. I will pay close attention to any possible symptoms including but not limited to dizziness, sedation, blurred vision, increased sweating, nausea, flu-like symptoms, and a fever. I will contact my doctor daily to let him know how I’m doing, especially as I slowly increase my dosage. I am hopeful for this medication to help me.

If Clozaril does not work for me again, then I will have to try IV Ketamine since I am personally against taking MAOIs. I am prepared for just about any situation. I know that I need to have my blood drawn before I begin the medication. Every week I will get blood work done; it will be sent to my psychiatrist and pharmacy. I cannot get the prescription without having blood work done. This will be another adventure; I’m interested to see how it works out.

Knowing Your Symptoms – Staying Ahead of the Episodes

I decide to look up from my screen this morning and I see the beautiful image of a sunrise. Without even realizing it, I stayed awake all night long. This was not done on purpose. In fact, I took all of my nighttime prescriptions and supplements like I always do. I’m not sleeping as well as I normally do, but at least I’m usually sleeping. Last night, however, I hope was an anomaly. I finally fell asleep around 8:15am and woke up at 10:00am. Something was off and I’d like to know what it was so I can avoid it in the future. Was last night a symptom or just a bad night? Everyone has bad nights on occasion.

My mind wanders constantly, I don’t need/want as much sleep as I’m used to, my energy is greatly increased, I’m dealing with auditory hallucinations, and I feel a bit more restless than normal. These all appear to be manic symptoms. However, I also have increased anxiety/panic, I’m indecisive, I feel worthless and pathetic, and I’ve had ongoing suicidal ideations. These seem to be depressive symptoms. I have learned over the years, through both manic and depressive episodes, to pay attention to my symptoms. It’s important to be able to tell your psychiatrist what symptoms you are experiencing, when they began, and how severe they are. I have currently been dealing with most of these symptoms for months, but the restlessness, wandering mind, and increased energy are new within the past couple weeks.

Knowing and keeping track of your symptoms can help you stay ahead of the episodes; at least that’s my experience. Sometimes I’m not aware of my own symptoms, so my husband or the rest of my family tell me what they see. Since my sleep has been so terrible lately, especially last night, I am concerned that it will enhance my other symptoms. All I can do to stay proactive is to be aware and then report the changes to my doctor. I can’t control the symptoms, but it’s important to bring them to the attention of my doctor. However, almost every time a new symptom happens, I tend to wait weeks or months before saying something, thinking that I can handle it on my own. I don’t like going through medication changes and new treatments. I already know that I’m coming up on a medication change next week. I have to decide between Clozaril and IV Ketamine by Tuesday, so my mind says, ‘What’s the point in saying anything if I’m already facing a med change?’ This is not a logical thought, but it is what goes through my mind. It’s possible these symptoms are brought on by the stress of choosing a new form of treatment and/or the loss of an old friend. I know the right thing to do, but I tend to procrastinate. My doctor already knows everything except how bad the sleep has really become. I can commit now that I will update him by Tuesday at the latest when I give him my answer regarding the new treatment.

The Importance of Those Who Understand

You know the moment when your bipolar episode takes over, but you don’t exactly notice it until a few seconds after it happened? Well, that happened to me yet again. I’m pretty sure I’m overthinking it, but simply put, I just say things I shouldn’t say. My mouth keeps going because my head won’t stop. I have dozens of thoughts all at once, and for me, I can see the connections. However, I know that what I’m saying doesn’t exactly make sense to others. This may be becoming one of those times, and if so, I apologize.

I openly discuss my bipolar disorder here, and with some of my family, generally with those that I feel or have shown to be understanding. Mental health is not an easy thing to understand, and I don’t want to put too much stress on anyone by telling them what’s happening, but I may have just done that. It will probably all be okay, but my mind has played out at least 30 different scenarios where I get in trouble. I wish I could stop this senseless thought wondering, but it’s part of who I am, and I just need to learn to deal with it a little better.

This is another reason why I find support groups so helpful. The friends that I’ve made at the support groups I’ve previously joined are there to help me through all sorts of events, even the ones that are only in my mind. I have become close with these individuals and I’m so grateful for that, especially with one individual. It’s a give and take relationship, but we empathize with and encourage each other. In my opinion, having someone who can empathize with me can make all the difference. Empathy is about being able to understand what someone is feeling because you have experienced it on your own, while sympathy is simply recognizing someone’s emotions and providing support. It makes me feel so much more comfortable knowing that I am not alone. That every thought and action, no matter how extreme, is also felt by others who love me.

This is not to negate the love and support from my family. Honestly, I prefer that they don’t completely understand my emotional state, I don’t wish that upon them at all. I’m grateful for the individuals that do not struggle with mental health issues. But for the individuals that can relate, it’s important to stick together. My husband keeps trying to get me to go to a new support group, and I put it off because I’m afraid. Yet now that I think about it, only good things can come from it as it has before.

Alone but Wearing a Mask

How is it possible that I can be surrounded by people I’m comfortable with (which is not an easy task), yet I still feel alone? In fact, I tend to feel even more alone, lonely, and depressed than I do when I’m actually all by myself. Don’t get me wrong, it’s not like I feel good about myself when I’m all alone, but for some reason I tend to feel even worse about who I am when I’m surrounded by others. This is especially how I feel in the past couple weeks.

Feeling like this makes it extremely difficult to pretend everything is okay when in a group of people. I have become pretty good at faking okay. I have some automatic responses and a fake smile that goes along with those answers. It’s as if I’m wearing a mask, but I’ve recently found out that there are aspects of bipolar that I can’t cover up.

The extreme episodes can be read on my face, even if I can deter some of the manic or depressive behavioral changes. I have had people who work at stores that I regularly visit who have pointed out that they can tell something is wrong. Usually it’s my anxiety, panic, and restlessness that tell people I’m faking it. I’ve been told that my face shows how I’m really feeling, despite what I say or how I act.

I’m aware that any emotion I feel while either manic or depressed, is not always real. If I seem to be happy, it’s probably just because I’m manic and can’t sit still or control my emotions. And when I’m depressed, just because I fake a smile doesn’t mean I’m really happy or feel good. The truth is that lately, I pretty much feel alone, no matter what. This has nothing to do with my friends or family. I know that I am loved and supported, especially by my husband and my mother. But I can’t help how I feel or my mood swings. If only I could show people how much they mean to me, no matter how I feel, but that is not something that I see as a possibility, at least not for today.

The Importance of Support Groups

There are many different types of treatment for any mental health disorder including but not limited to various types of medication, talk therapy, family education, rehabilitation, and support groups. I have especially found support groups to be helpful in dealing with and managing my bipolar disorder and PTSD. There are various types of support groups; some are for generalized mental health, while others specified for certain disorders.

I was very reluctant to go to a support group my first time because I was afraid. One of my PTSD symptoms causes me to be terrified of anything, especially anyone, that I don’t know. It’s a challenge for me to simply run errands; the thought of sitting next to another person and talking about my life seemed to be impossible. When I was in Connecticut, I researched support groups at my local hospital and found a weekly group called ‘Depression and Bipolar Support Group’. In the beginning, my mother came with me, she has always been extremely supportive of me in every way. It took many weeks to get comfortable with the others at the group, but soon, these individuals became close friends that I still talk to years later.

Going to a support group where the other people there have the same illnesses as you do is a comforting feature. I moved back to Arizona in 2009 causing me to leave my Connecticut support group and the friends I have there. Again, I was scared to start going to a new support group. Meeting new people and the intimacy of discussing what’s going on in your life and how you’re feeling is nerve-racking for me. My husband came with me in the beginning for this new group, ‘Taking Control’, which is also for bipolar and depression. Over time, the others in this group became my close friends who I still hang out with.

Each support group that I have been a part of has become a huge part of my life. The groups gave me a place to go and talk about my mental health issues where other people actually understand and relate to me. Sadly, my last support group was discontinued, but luckily I still talk to and see some other group members. I have found a new support group for bipolar depression called ‘Bipolar Bears’ (I love the name), but again, I’m extremely frightened to go. This is a new group for me, at a hospital that I’ve never been to, in a part of town that I don’t know. I’ve talked to a close friend from my last support group, and we have talked about going together; we will support each other, while we go to a support group. Now, I just have to get myself to actually do it.

Mental health support groups have helped me get through many difficult times and I suggest them to anyone and everyone who struggles with mental health. Being able to have people relate to the things we go through is a very comforting feeling. Meeting more people that help support you through your life is a blessing. Maybe this post will help me actually get to this new support group. I suppose I’ll find out soon enough.

My Side of the Pole

Bipolar – Mental Health

Category: Mania