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.

Bipolar and Addiction: There Is Hope

There are various statistics, but it seems that more than 50% of people diagnosed with bipolar disorder also struggle with addiction in some form, such as drugs or alcohol. When a person is diagnosed with bipolar disorder or another mood disorder, and also has a problem with drugs and/or alcohol, it is called dual diagnosis. I was diagnosed with dual diagnosis when I was 14 years old. My drug of choice was crack, but I would do whatever I could find; I also had a problem with alcohol. If anyone is thinking about a rehab, it’s important to research each treatment center you are looking at for yourself or your loved ones to make sure it can properly treat both your mental health disorder and your drug/alcohol addiction.

Dual diagnosis can make it more difficult to treat either disorder, but it’s not impossible. I’ve heard some people say that drugs and alcohol can bring on mental health episodes; and mental health episodes often lead individuals towards drug/alcohol use; both are true based on my own experience.

I know it’s possible to recover from dual diagnosis. I am 11 years sober, which is something I never thought I could say. On April 29, 2004, I went willingly to a yearlong rehab that also helped treat my bipolar disorder, and I have been sober ever since. I even worked there for 9 months after I completed the program. There is always hope, recovery from addiction is always possible. There is no single way to recover from addiction, every person is different. I got sober through the help of a 12 step program. What worked for me may not work for another person.

I feel the same way about treating bipolar disorder. I have tried so many different medications but I have not found the right combination of meds that works for this episode. Even though the meds may have previously worked, or are currently working for many others, it doesn’t mean they will definitely work for me. It’s basically a trial and error situation when treating mental health. That is really hard for me to accept, especially since I’ve been through so many meds. I want a fix, I want to feel better again; I’m not sure how much more patience I have. However, if I could recover from a severe drug and alcohol addiction at 19 years old, then I can hold on to hope for bipolar ‘remission’. I’ve had times in my life when I was not manic, depressed, hypomanic, or mixed. If it’s happened before, it can happen again. Anything is possible.

Talk Therapy: Difficult Yet Beneficial

There are many forms of therapy that are known to help individuals with bipolar disorder and other mental health illnesses. Cognitive-behavioral therapy (CBT), dialectical-behavioral therapy (DBT), interpersonal therapy, psychotherapy (talk therapy) and family-focused therapy are just some examples. Therapy is a vital aspect of bipolar disorder treatment. I have been using therapy as a tool since I was 14 years old. As long as you have the right therapist, it is very helpful. The way I found the right therapist was just by trial and error. It was difficult, but I ended up very happy with my final choice.

I’m not really sure what form of therapy I’m using right now. I go in his office, he sits at a desk and I sit on the other side, it’s very informal and I like that. We have some things in common, for example, he is also from the east coast. I’m very comfortable with him and I’m comfortable in his office in general. Basically, I talk about what’s happening now, what happened in the past, and my fears, and he points out some patterns that I never noticed. Then, he provides some solutions and even gives me small easy steps to take to achieve these solutions. He holds me accountable. I suppose you could say that he helps me find and use tools to deal with situations that I encounter. He also helps me to have healthier relationships with anyone/everyone I know. He knows my triggers and makes sure to always respect them and my boundaries.

It took me a few years to be able to talk about the abusive relationship I was in. But one day, only a few months ago, I finally opened up. He was great about it. I didn’t feel judged or looked down upon. He doesn’t bring up certain aspects of it because he knows how much of a trigger it is for me. I think that the type of therapy I use is talk therapy, also called psychotherapy, but I could be wrong. No matter what, the therapy that I do is helpful; I wouldn’t do it if it wasn’t. Therapy is very difficult; it’s hard to talk about your life, problems, and difficult situations, especially face to face with another person. If you can get past these difficulties and the fears of talking about some of your most sensitive issues with a stranger, you will gain the benefits at some point, just hang in there.

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.

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.

ECT – Electroconvulsive Therapy

Electroconvulsive therapy, ECT, is one way to treat severe depression and mania. The treatments are done under general anesthesia, allowing the doctor to induce a seizure by passing small electrical currents to the brain. ECT is known to be controversial because of how it was administered many years ago and the serious side effects it used to cause, but it is now much less dangerous.

I started ECT in February 2015 because no other treatments were working and I was desperate for something to help. In the beginning, I was doing the treatments 3 times a week for 4 weeks, then once a week for 4 weeks, then every other week for 8 weeks, and finally once a month. It has been a successful treatment for me. It has not solved all my problems or completely removed my depression, but it did get me out of a major depression when every other treatment failed. At this point, I want to stop the treatments, but I remind myself how beneficial they have been for me.

ECT is physically demanding the day of the treatments. I’m groggy (I assume from the anesthesia), I have confusion, my jaw hurts badly from the seizure clenching, and my body is overall exhausted. All of these symptoms go away within at least 24 hours. The only lasting effect I have is memory loss. Supposedly, the memory loss for most patients is temporary and only goes back a couple weeks or months at the most. Memories generally comes back shortly after treatment ends. However, my memory loss goes back years. I had even forgotten that my grandmother passed away, so I had to deal with her death all over again. Since I’m still doing monthly treatments, my memory does not improve. The cost is also a difficult aspect to handle, but all of the side effects and aspects are still easier to deal with than many months of a major depression with no relief.

Today was my 33rd treatment. It’s a lot on my body and mind. I don’t know how much longer I can handle these treatments. I know that my psychiatrist and my mother want me to continue with the therapy because they have been mostly successful. They are concerned about what will happen if and when I stop because of the success. This I understand, but I wish they would put themselves in my shoes. I feel that if ECT got rid of my depression and made me stable, then I would be happy to continue. However, I still take 7 different psych medications every day and an additional 2 medications as needed. In addition to all of that, we are going to be adding another psych medication within the next couple weeks. I also have to take 3 other medications for some medical conditions. I hope I get to stop ECT at some point, but I fear that if I do, I will regress to a horrible depression or mania.

IV Ketamine vs Clozaril

I know I need another form of treatment, and my psychiatrist is respectful enough to give me a choice. However, as stated in my last post, making any decision is extremely difficult. This decision feels as if it’s nearly impossible.

At first thought, IV Ketamine terrifies me. I used to get high off of Ketamine, I’m now 11 years sober, but the possibility of dissociation is what scares me the most, it brings back traumatic memories which trigger my PTSD. I’ve already tried Clozaril once and ended up with a fever around 2 weeks. I had no other symptoms and my weekly blood work came back completely normal. Even though Clozaril is a very risky medication, it doesn’t scare me like the IV Ketamine does.

The information I found out about Clozaril after research and talking to my psychiatrist:

Giving Lithium with Clozaril can help prevent the low white blood cell count with a 94.5% success rate. I am already on Lithium, so this is beneficial to me.
The risks of this drug are increased for me because I’m Ashkenazi, which is Eastern European Jewish heritage.
Only 1-2% of patients that take Clozaril develop agranulocytosis, a blood disease that increases the susceptibility to infection. Only 1-5% of patients may have seizures, but that can be avoided by titrating the dose up slowly.
Clozaril is 60% effective for patients.
I would have to do weekly blood tests for 6 months, then do blood tests every 2 weeks for 6 months. I could then go to blood tests every 4 weeks if there were no problems. Blood tests are required to get medication.
From what I understand, my worst case scenario is: I start to get a fever or other symptoms, I call my psychiatrist, he would send me to the hospital where I would get blood work done and they would make sure my fever goes down. Then I stop the medication again and have to try something else. This is what happened last time.

The information I found out about IV Ketamine after research and talking to my psychiatrist:

The IV Ketamine trial consists of the first 2 treatments, which are done within 1 week. I would generally start to see some type of result within 24 hours. If I don’t see results after the first 2 treatments it would be considered ineffective for me.
This treatment is very effective, and patients don’t have to wait 6 weeks for medication to start working.
I would be monitored at all times by a doctor. If I had a panic attack during the infusion, he/she would be able to treat me.
I can take something for my anxiety before the treatment to help me stay calm.
Some patients experience dissociation during the infusion. Dissociation can cause a lack of control mentally and/or physically. This is the part that is a trigger for me. Just writing about it now is causing a massive anxiety attack.
Maintenance treatments are done anywhere from every 3 weeks to every 3 months. Every patient is different.

Now that I have all of this research, I should be able to make a decision, but my indecisiveness is always there. I’m leaning more towards the Clozaril rechallenge. I understand the risks and as long as I immediately tell my psychiatrist about any symptom I have, I should be okay. I know I could get a fever again and it won’t work, but then my options will be narrowed down for me. I also have several reasons not to do the IV Ketamine. First of all, it terrifies me. I’m having an anxiety attack right now just thinking about it, what will happen when it’s time for the actual treatment? It is very expensive and not covered by insurance. The first 2 treatments are $600 each, and every maintenance treatment is $400. The IV Ketamine is also new to me, and new things scare me. I’ve done the Clozaril before so I know what to be on the lookout for.

The only reason I’m considering either is because the psychiatric benefits outweigh the medical risks. Writing this post has helped me realize how scared I am of the IV Ketamine. I don’t think I could handle the treatment. I think my best option is to rechallenge the Clozaril.

My Side of the Pole

Bipolar – Mental Health

Category: Treatment