A Father of a Son with Bipolar Disorder Speaks

 

by Julie A. Fast

I will let you in on a secret. Many of us with bipolar disorder feel like failures when the illness doesn’t allow us to have the high powered or super intellectual and/or creative jobs that we could probably do if this illness were not so difficult to manage. I’ve talked with parents for over 20 years now and have learned something important. Being a good person is far more important to parents than being a ‘successful’ person only through work and finances.  Don’t believe me? I will let Don take over from here.  He is writing a letter to his son Marcos. 

Dear Marcos,

My son.  Last week something happened that made me so happy I thought I would cry. You were the cause of his happiness and I wanted to say thank you.  You are probably wondering what you did. I know you.  You may think that I’m talking about jobs or school or reaching some kind of society implied goal, but I’m not. I’m talking about the call you made to your mother where you asked her for help in setting up your appointments for the month. When she hung up the phone, there was a smile and her first words were not that you were finally doing this or doing that- she said, “I am so proud of him. I am so proud to have a son who knows how to ask for help. So few people can do this.”

We have loved you and worried about you for many years.  Like you, we had goals and dreams that were attached to an idea of how things should be. Marcos is so smart, he should be a lawyer like his brother. I am sorry that we ever thought this way, but we did. And I know you have thought the same way for many years.  When you got manic in law school, it was devastating for all of us, but I can’t imagine what it was like for you.  We had no idea what to do. Now, three years later we do have an idea of what we all need to do. We need to live our lives and share with you the pride we feel having you as our son.

How can I say this in a way that explains what your mom and I felt and how we discuss your life these days? I am going to try. I know, I am being sappy!  But I mean this. Marcos, the way you have handled this diagnosis makes you a superstar in our eyes. The way you have learned to ask for help and receive help is humbling for us. You have learned skills and taught yourself skills that would never have been there if you had followed the path you thought was in front of you- the path we simply assumed would happen in this family of lawyers and teachers.  I know this is not how we felt at the beginning. We didn’t understand this illness at all and thought you would simply take a pill and be better. We all know better now.

Do you remember when we almost called the police on you and you screamed at us and ran off in your car? That night changed all of our lives. This was not the son we knew. This was not you. This is when we blamed YOU for the brain we gave you. We can laugh about that a bit more now. Nothing ever prepares a parent for a child getting sick. We hid our heads for awhile. There was a lot of blame.  Why can’t he settle down?  What the hell was he thinking when he skipped his exams!  Who taught him to even play poker! All of this was so new and so scary.

Three years later we have our son in our lives in a way I am not sure we would have had if the bipolar never showed up. No, I am not saying I see bipolar as anything good. I don’t. In fact, this is something I would like to discuss with you, but for now, this is a note to you to tell you something specific.

We will always love you, but who knows how proud we would be of you if the bipolar had not happened and we had not seen the amazing son who is now changing the lives of so many people. Your openness on social media scared us at first. How will he get a job now?  I can’t believe I thought this. Please forgive me and know that this has been a learning and growing experience for ME. I was judgmental and I know that people have suffered because of this. You have become my teacher.

Marcos, I don’t care what job you have. I don’t care how much money you make.  I care about the man you have become and I want to let you know I simply could not be more proud of you. Anyone who takes care of his health and his relationships in the way you do is a success beyond measure. Happy Birthday Marcos. I hope the next 25 years are wonderful for you and that what ever you decide to do next in life brings you great joy.

Papa

 

 

Bipolar Disorder in the Relationship: A Video for Couples from Julie A. Fast and the International Bipolar Foundation

Bipolar Medications: What is the difference between Depakote and Lamictal?

 

Reader Question: Julie, what is the difference between Depakote and Lamictal?  #bipolar #schizoaffective

Great question as our bipolar world of medications can be a bit confusing.  I am lucky as I was trained by a master, Dr. John Preston. For over ten years, he has taught me about psychiatric medications. So please know that what I write is my opinion, but it is based on a solid background in medications.

This is info to use with your health care team.

There are four main psychiatric disorders: Mood, Anxiety, Psychotic and Personality. Depression and bipolar disorder are mood disorders.

Bipolar disorder is what I call a garbage pail illness as it has ALL of the symptoms you find in all four categories of psychiatric disorders. The difference is that bipolar is episodic and our symptoms mix and match and come and go. This is a very unique aspect of bipolar.

If you have depression and mania, you have bipolar. It is genetic and not situational. Bipolar runs very deeply in a family tree and almost anyone with the illness can find a form of bipolar in a close relative.

There are four main types of psychiatric meds: mood stabilizers, anti depressants, anti psychosis and anti anxiety.  You can also add ADHD and sleep medications to this list, but for the question regarding Depakote and Lamictial, here is what you need to know.

1. There are NO and please hear this clearly- there are ZERO medications on the market to treat bipolar disorder as a whole. The only medication used to treat bipolar disorder fully is lithium and it is a natural salt.

2. ALL manufactured, man made medications used for bipolar are used as ‘off label’ medications. This means they were created for something other than bipolar disorder and where found to actually help those of us with the illness.

3. Anti depressants are NOT a treatment for bipolar disorder as they tend to cause mania while helping a person who is depressed. This is why anti depressants can NEVER be used alone in the treatment of bipolar depression. They can be used with caution with a ‘mood stabilizer,’ but never alone.

4. The term MOOD STABILIZER is not really correct. There are no real mood stabilizers on the market.  The drugs we now call mood stabilizers were created for other illnesses and then renamed mood stabilizers when it was found they helped bipolar.

5. Any medication used to treat bipolar disorder moodswings has to be careful monitored as we tend to get manic from medications that affect the brain directly – such as anti depressants and ADD meds. Yes, I am aware I am repeating myself. This is hard stuff to remember!

6. Many years ago,  people with epilepsy used anticonvulsant drugs to stop epilepsy episodes and people reported that their moods were miraculously better as well! Thus, today’s ‘mood stabilizers’ are almost exclusively epilepsy drugs. Tegretol, Tripeltal, … DEPAKOTE and LAMICATAL are all anti convulsants that are used off table to treat bipolar. But, they are not all the same and many, many general health practitioners need a lot more education on this topic.

Depakote and Tegretol are used for mania. ONLY. They are not for depression. They are anti mania drugs. This means that they can help someone with bipolar greatly, but there still may be a lot of depression to contend with. These are usually used in bipolar one as they really are great at preventing mania. As with all drugs, the issues are with side effects, not the efficacy of the drugs.

Trileptal is sometimes used in bipolar mania treatment, but it’s not as common as Tegretol and Depakote.

Then there is what I call the wonder drug Lamictal.  The generic is lamotrigine. This is a spectacluar and life saving drug for many people as it treats bipolar depression and for the majority of people, it doesn’t cause mania the way all SSRI drugs cause mania. It revolutionized the medical treatment of bipolar disorder, but it is often misused as people think it helps mania.  It does not.

Lamictal is for bipolar depression only.  Although it can help with some hypomania and can definitely help curb some milder rapid cycling, Lamictal is NOT a mania drug. So, to finally answer your question and it is a good one.

Depakote is an anti convulsant, renamed a mood stabilizer that is used only to treat mania.

Lamictal is an anti convulsant, renamed a mood stabilizer that is ONLY used to treat bipolar depression.

They are NOT interchangeable. This is why you will often see people with bipolar one on Depakote and Lamictal.  People with bipolar two often have a different drug path as we live with hypomania and not full blown/psychotic mania.

Please know that you can be on Depakote alone to treat bipolar if the depression is not overwhelming.

But you cannot be on Lamcital alone to treat any form of bipolar if the mania is a problem. It is not a mania drug. Please educate our health care world on this fact. General practitioners almost always get this wrong.

Whew! But wait, there is more. Now that you have the above info, there is another set of drugs I didn’t discuss. But before I do so, here is a quiz:

1. What is the only real mood stabilizer that works on mania and depression? 

2. Are there any medications on the market that were created specifically to treat bipolar disorder? 

3. Does Lamictal treat mania? 

Answers: Lithium,no and no!

Next, the truly wondrous but really terrible in terms of side effect drugs called anti psychotics.

By the way, when someone says they hate psych drugs, I like to challenge this statement. Why would we hate drugs that save millions and millions of lives? What we hate are the side effects. There really is a difference.  People don’t hate Depakote. It works to prevent mania. It’s a miracle. What they hate is the weight gain, etc. Let’s get clear when we talk about meds. Now, the biggies- the anti psychotics. They are revolutionizing our bipolar world.

Anti psychotics were introduced in two phases called first and second generation mediations. The first generation started in the 1940s with the creation of Thorazine. People hate this drug. I don’t. Thorazine was and still is a miracle. It stops psychosis for many people. Other drugs followed such as Trilafon and  Haldol. People hate these as well. But do we really hate these drugs? No. We hate the side effects and believe me, the side effects of Thorazine are legendary. I have been on Trilafon and Haldol. It’s not pleasant. But they worked.

In the 70s, atypical or second generation anti psychotics were introduced.  The biggest name here is Zyprexa from the 1970s.

Why does this matter for people with bipolar? First, because many of us actually deal with psychosis, but the real breakthrough came when hospitals realized that anti psychotics are also anti mania drugs. So like Depakote and Tegretol, anti psychotics such as Zyprexa, Seroquel, Risperdal and now Abilify and Latuda were used much more for people with bipolar instead of them being seen only as schizophrenia or psychotic disorder drugs.

They changed our lives. This is why many, many people with bipolar one are often on anti psychotics.

Once again, we say we hate these drugs. The anti psychiatric movement vociferously hates these drugs, but I have a different opinion. I LOVE these drugs. They stop mania and psychosis. What we all hate is side effects. That is where we need a revolution. There are no natural treatments for those of us big time bipolar, especially if a person also has a psychotic disorder as I do.

Then, another miracle happened- and yes, I use the word miracle for these drugs. It was found that anti psychotics such as Abilify also helped many people with bipolar depression. A drug for depression that doesn’t cause mania, but actually helps mania as well. That is a miracle. Too bad about the side effects- it’s always a trade off.

I believe in limited/lowest dose possible use of medications with a strong management plan. I would not be alive without the judicious use of medications. Trying to treat bipolar disorder, schizoaffective and schizophrenia without some kind of medication help is nigh on impossible. Sure, a few can do it, but the majority of us cannot. It is rare to find someone with schizophrenia who can manage the illness without some form of help from anti psychotics.

People with bipolar and schizoaffective need more education around these serious medications. We need to advocate for medications with less side effects. That is where the main problem lies, not with the efficacy of the drugs.

Now, you can answer the question yourself- What is the difference between Depakote and Lamictal?

Julie 

Keith Bates and Julie A. Fast Talk Bipolar Disorder, Schizoaffective and Life with Paranoid Psychosis

What does it feel like to be psychotic?

The majority of people with bipolar disorder one will experience psychosis in a full blown manic episode. Many people with bipolar one and bipolar two experiences paranoia, a form of psychosis, but often don’t know what is happening as the symptoms feel so real. People with bipolar disorder who also have a separate psychotic disorder, like Keith and myself actually have an illness called schizoaffective disorder. People with bipolar disorder can also have schizophrenia, but schizoaffective is more likely. I believe that psychosis is much more common in bipolar than we think- read below and ask yourself,  Do I have psychosis? 

 

 

Hello from Keith and Julie, 

 

Hello, my name is Keith Bates….  I am a 22-year-old undergraduate Social Work student and sufferer of psychosis. My psychosis stems from my schizoaffective disorder, which includes paranoid and bizarre delusions with auditory hallucinations and intrusive thoughts, amongst other criteria. I am currently prescribed an antidepressant, mood stabilizers and an antipsychotic medication: Prozac, lithium carbonate, Lamictal and Clozaril.

 

Hello, my name is Julie A. Fast. I’m a mental health author who was diagnosed with rapid cycling bipolar disorder two with psychotic features in 1995 and later diagnosed with schizoaffective disorder.  I control my psychosis with my management plan and lithium orotate as needed as I am not able to take anti psychotics. I would love a little lick of Seroquel right now, but as this is not possible, my only option is to be aware of my symptoms in order to keep them under control. I’d say on a psychosis scale of 1-10, I’m about a four today. 

 We thought you might like to know what it feels like to be psychotic! 

 Keith,  what does it feel like to be psychotic? 

Living with psychosis is like dreaming in real-life. And sometimes, those dreams manifest themselves as nightmares. I’ve come to realize (or at least am coming to realize, and sort of understand) that the reality I experience is different than the reality most people experience. There are many people who deal with anxiety, paranoia, and delusional thinking. But as someone with schizoaffective disorder, my psychosis is in a league of its own. I am always anxious. I am always paranoid. I am always delusional. And it scares me.

When someone wakes up in the morning, their first thoughts may be about showering, brushing their teeth or brewing a necessary cup of coffee. Waking from my much-needed slumbers, my acute thoughts are fueled by crafty voices which command me to get out of bed and cut off several parts of my body.  The shower is a thriving environment for these specific conferencing voices, so I don’t shower most of the time. I generally go three to five days without showering or changing my clothes, using a generous dousing of cheap Calvin Klein cologne to smell more neurotypical. The sight of the more sensitive parts of my naked body increases the persistence of the voices in their effort to eunuch-ify me. I’ve been dealing with these specific “dismemberment” voices for several years now, and yet they still scare the life out of me.

I can’t use knives at dinner; I’ve had all of the knives in the household hidden carefully by loved ones in order to keep me from stabbing myself in the stomach at Thanksgiving dinner because the voices told me to. And for a long while, the voices even convinced me that the food I was eating (whilst using plastic silverware as to not hurt myself) was actually parts of my own body and other unpleasantries. The voices would say that salsa was blood, oatmeal was maggots, meat was brains or my own flesh. I would believe that everyone around me was “in on it” and attempting to poison me with this food that they themselves were also eating. I assumed the poison food did not affect others because they were reptilian aliens who were used to consuming poisonous Keith flesh.

The voices never stop telling me to hide from the police who, according to these voices, are out to arrest me at every time of the day. I am even hesitant writing this as I feel like they may be reading as I type. I should stop now.

Keith

***

Julie on what it’s like to be psychotic: 

From my journal on a day where I’m psychotic:

Today I feel like I’m not real. I can see my body, but it’s like I’m in a bubble. I’m fascinated and obsessed with my crime story materials that I love to read, but when I get psychotic, they feel a bit too real. It’s like I have super powers and can think what other people are thinking. I am submerged and not open to the world. It’s like a cocoon. I feel slightly tingly and charged with thoughts that are more like feelings than thoughts. I don’t feel connected to my body. I’m all thinking. I am not hallucinating. Instead, I feel separate. I see the cars go by and see the people all around me talking and interacting and I am separate and sealed off in a bubble. 

 I am not manic or particular depressed. I am apart. Separate. Not scared, though psychosis is often scary. I feel like I’m a being and not human.  Words feel deep and my ideas are intense and interconnected. It is like being drugged.  I have to be careful where my mind leads me as I will get fascinated with crime and other people who are psychotic such as mass murderers. 

 Psychosis is very personal. It’s important to separate psychosis and mania. People who are manic and psychotic act differently than people who are just psychotic. Psychotic mania will be very vocal and active. The  kind of psychosis I have just percolates in my brain and tells me things- or should I say, creates feelings that are so real there is no way I would ever know they are psychosis unless I knew what to look for. 

 It would be very easy to isolate and create my own interpersonal world where I look up things on the internet to fuel my psychotic thinking, keep away from real people, look for items that match my thinking such as shows that talk about criminals. I also experience psychosis while sleeping. This is different than dreaming. People know when they are dreaming.  Being psychotic at night is more like an experience than a dream. You know it is not real, but it feels so real.  You get scared. 

When I am psychotic, I’m also very anxious. This is picture of what I look like when anxious and psychotic.

 

I often feel certain pictures capture what it feels like to be psychotic. Here is one.

 

 

My psychosis is more about anxiety than just depression. I don’t get manic psychosis unless I use marijuana, which is why I don’t touch the stuff. I get ideas that my food is actually monkey brains or I have hallucinations such as rats running around chairs or hearing my name called as though I am alone in a sports arena and I hear my name shouted from a seat far away. I feel that I’m being followed by demons or that I have super powers that I can’t tell anyone about.  I work hard every day to prevent psychosis.

Julie

A note from Julie: Keith and I did not share our stories and compare notes and yet, can you see how similarly we experience psychosis?  Our stories are the same because they are about an illness. Keith is a young man, I am a 54 year old woman and yet our experiences are the same. His are more intense than mine which means his psychosis is stronger on the schizoaffective scale. Mine tends to be more anxious and paranoia with less hallucinations unless I’m really ill.

Keith and I had a talk the other day about living with paranoia and still getting on with life. When we are paranoid,  it feels real. The cops following us feel real.  The idea that we have no friends and that people talking about us feels real. But it’s not real. Learning to live with a feeling and learning to live in reality can happen at the same time.  Not acting on our psychotic thoughts is hard, but it is the only way to survive while we are getting help. Keith is an amazing man.  He is open about his mental health, open about cannabis and how THC can lead to psychosis and open to talking about this psychosis even though he is paranoid that he will be punished by the police for writing about his life. I simply could not admire him more.

Click here to watch Keith’s Delusions:Possible vs. Probable | Binary video. 

***

Do you have psychosis?

If our stories feel like your own, write down your symptoms and talk with a health care professional and get help. It will be painful. It will NOT feel good, but it is needed. Psychosis is a relationship wrecker. It’s an illness. We can learn to live with and manage psychosis. I hope that Keith truly knows how much I admire him. If you also admire Keith, please let him know. He is on Facebook and is a great guy.

Julie 

Ask Julie A. Fast Tonight: Bipolar Disorder and Medications

 

Ask Julie Fast Q&A tonight at 7:00 PM PST. Let’s talk meds and . Meds are half of our plan. Let’s get this part right. Join me on Facebook. I will answer your questions in real time. Stability rules!

I write daily on my Facebook page. I hope you can join me this evening. I also have a group for partners called The Stable Bed and a group for parents and family members called The Stable Table.

I love the interactive nature of Facebook. You can send your questions and I will answer live. I will give ideas for further reading and am open to people who are upset about meds or confused about why some people need them.

Nothing is taboo!

Julie 

Please note the date and time zone carefully. It is today, January 25 at 7:00 PM Pacific Standard Time. I am on the west coast of the United States.

Bipolar Disorder and Cannabis: Dabbing and THC

Dabbing creates 80-90% THC marijuana. It will make us manic and psychotic. People with #bipolar cannot dab. Ever. Let’s educate the world on the differences between CBD marijuana and THC and prevent the mania and psychosis I see in the children of my clients every day.
 
Presenting dabs as candy is dangerous. I’m all for fun marketing, but dabbing hits our systems like meth.
 
I call for better labeling and warnings on THC and the fact that for those of us with a genetic predisposition it can be dangerous.
 
I currently have three clients with children in jail after dabbing. I do wish I were exaggerating.
 
It’s ok for people to use marijuana. It’s ok for people to dab. It’s ok for people to do anything they want! But as with alcohol, warnings are needing.
 
We will see these warnings within a few years as legislation is already happening. I am not anti marijuana, but I am pro education.
 
If you are going to use marijuana when you have #bipolar, #schizoaffective or #schizophrenia, please use CBD only weed and then check to see if you still have an increase in mania or psychosis and make a decision from there.
 
Education rules!
 
Julie
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