Insidious Black Box

I apologize for the length of this post. Please consider reading the entire post. It’s very important. Your life could depend upon it. (Robin)

Emotionmasks insane faces

I take two medications that I considered to have a Black Box warning. They both depress breathing. Together they can stop my breathing altogether… There are other dangers.

I have chronic pain with Bipolar Disorder and Generalized Anxiety. I am prescribed both Oxycodone and Clonazepam by two different providers. They both know that I take both medications.

I see a pain management specialist for my pain. I have for some time now. To be treated there, I have had to sign a contract that governs my behavior with regards to taking pain medications, I have to take a pee test every time I go in and they count my pills every time as well.

My med provider handles my Clonazepam prescription for anxiety. I suffer from extreme anxiety. Sometimes I feel like my brain is going to explode. Recently, this woman, who is the 4th or 5th provider I’ve had since I started going to this clinic, told me that I’m more likely to kill myself because of anxiety rather than depression. I was always told that a depressed person was more likely to commit suicide when they started to feel better. When they started feeling better, they finally would have the energy to follow through with their suicidal inclinations. Apparently, there is more to it than that.

My counselor and every med provider I’ve had is intimately aware of my massive anxiety and my inability to get it under control. We’ve tried all the counseling type of solutions including Cognitive Behavioral Therapy (talk therapy), mindfulness and other techniques. I’ve not had success with any of them.

My med provider is content for me to only take Lamotrigine, which is primarily to treat my Bipolar Disorder depression symptoms, and not to take anything other than Clonazepam for anxiety. From talking to her, it appears that this is primarily to treat the depressive symptoms that I experience. I have not been able to get any of the med providers who have treated me to give me anything for anxiety other than Clonazepam.

She, my med provider, told me at our second meeting, that people with anxiety are more likely to commit suicide than people with depression. Since I suffer primarily from anxiety, you would think someone would have warned me of this. I understand now why I feel so self-destructive while I’m exploding with anxiety.

She has told me that her goal is to get me off the Clonazepam completely. Now that I’m taking my runaway anxiety and the real chance I will kill myself because of it more seriously, I’m also taking the mix of these two medications seriously. I always have, but my frantic response to my anxiety has created a situation where I’m so afraid of what might happen if I stop taking the drug for anxiety.

I’ve always felt like I’m most insane when my anxiety is at its peak.

I understand that long-term opioid use for chronic pain is not the most effective way to treat it. I’ve wanted to find a different solution for a long time. My pain management provider doesn’t offer other alternatives than pain medications.

I normally don’t want to die. I’ve always had urges that are normally short in duration towards it, but I haven’t had times when I sit there with my bottle of Oxycodone ready to take it all. But, I could.

I’ve never told any of my mental health caregivers that I have suicidal thoughts. I know that my community does not have good facilities to treat acute mental health emergencies. I don’t want to become one of those people who is shuffled into a hospital emergency room with a guard sitting outside my little room. That’s what they do. I have first-hand knowledge of this.

So what’s the answer? Do I chance dying in my sleep? Or do I chance ending my life while I’m awake? Both are real dangers.

I’ve decided to deal with my feelings of self-destruction now. With the danger of the two medications and my new understanding the relationship between anxiety and suicide, I have promised my family that I will talk to my counselor on Wednesday when I see him. I will admit that I think about suicide. That’s a huge step for me.

I’m afraid. Admitting how I’ve been feeling for years is like admitting that I can’t control the one area of dealing with my mental health that I always felt I could say I didn’t have a problem with. I’ll finally be admitting I have no control over my depression or my anxiety in relationship to staying alive.

As I say, I don’t want to die. When my anxiety runs away I cannot always control myself. I can become violent and destructive. I break down and cannot function. I become paralyzed yet also hysterical.

Yesterday I talked to my mother and all three of my kids and admitted the truth to them. My youngest who is a psych major at the same university that I attend (so is her partner) said she had been wondering if that was a problem for me. They all agree that they would rather I call them than I call a suicide line. I’ll talk to my therapist about that.

I have tried to learn to practice mindfulness several times in the past. I never fully committed to it. Mindfulness was just part of the learning experience in one of my classes I just finished. It’s time for me to review the materials I have about it, I have lots. I need to try to learn how to harness it’s potential in earnest this time. My life depends upon it.

I have a particular fear: I’m terrified of my anxiety. I know what it does to me. I sometimes feel the insidious devil of insanity creeping through my mind trying to take over, and it literally shreds my mind.

If you have any Black Box warnings for medication yourself, please take it seriously. Now that I am self-aware of my true situation I’m ready to find a way to deal with my symptoms.

 

My main medications:

Chronic Pain – Oxycodone / Nucynta

Anxiety / PTSD – Clonazepam / Benzodiazepines

Bipolar Disorder / Depression – Lamotrigine

 

Oxycodone – Warnings

“To make sure this medicine is safe for you, tell your doctor if you have:

  • a history of drug abuse, alcohol addiction, or mental illness
  • if you use a sedative like Valium (diazepam, alprazolam, lorazepam, Ativan, Klonopin, Restoril, Tranxene, Versed, Xanax, and others)”

https://www.drugs.com/oxycodone.html

Clonazepam – Warnings

Risks from Concomitant Use with Opioids
Use of benzodiazepines, including Clonazepam, and opioids may result in profound sedation, respiratory depression, coma, and death. Because of these risks, reserve concomitant prescribing of benzodiazepines and opioids for use in patients for whom alternative treatment options are inadequate.

Observational studies have demonstrated that concomitant use of opioid analgesics and benzodiazepines increases the risk of drug-related mortality compared to use of opioids alone. If a decision is made to prescribe Clonazepam concomitantly with opioids, prescribe the lowest effective dosages and minimum durations of concomitant use, and follow patients closely for signs and symptoms of respiratory depression and sedation.
(The above Warning is taken from: https://www.drugs.com/pro/clonazepam.html)
Concomitant: (synonyms: attendant, accompanying, associated, related, connected)

Lamotrigine – Warnings

To make sure lamotrigine is safe for you, tell your doctor if you have:

  • A history of depression or suicidal thoughts or actions
  • Some people have thoughts about suicide while taking this medicine. Your doctor will need to check your progress at regular visits. Your family or other caregivers should also be alert to changes in your mood or symptoms.

https://www.drugs.com/mtm/lamotrigine.html

Nucynta – Side Effects for Health Care Professionals

Psychiatric – Common (1% to 10%): Insomnia, confusion, abnormal dreams, anxiety, depression, irritability, nervousness, drug withdrawal syndrome, restlessness, sleep disorder, hallucination, depressed mood.
https://www.drugs.com/sfx/nucynta-side-effects.html

 

Benzodiazepines

Benzodiazepines may be used in the treatment of anxiety, panic disorder, seizures, or sleep disorders.
https://www.drugs.com/drug-class/benzodiazepines.html

 

Bipolar – Tick Crisis!

tics7089581_sThe last month has been a horror. I’ve developed my facial tick again and nothing we’ve done has slowed its march to make it so bad that I can’t have a conversation. In my classes at University I’m usually very outgoing and participate in class a lot. With this disability, and yes, that’s how I think of it, I can’t talk and participate with the others. It just kills me to just sit there. Sometimes I choose something short to say and I raise my hand and try to say it. My courage is met with stuttering, ticking and humiliation.

On the 10th I went to the ER because it was so bad that I couldn’t be understood when I talked. My eldest thankfully happened to have time to take me in. It was good because she had to translate for me at times. The doctors took me off my last added medication and prescribed me to take Lorazepam. The problem with that is I can’t take the Lorazepam if I plan on functioning. I have classes five days a week and two of those days are in the morning and in the afternoon so I couldn’t just come home and take it. So, it didn’t work. The ER wanted me to see my MD within 3 days of my visit to the ER. I tried, but my MD said that the ER always said that and that it wasn’t necessary. I disagreed. I was still ticking at a 7 out of 10 in intensity. It was a nightmare.

I finally got in to see him. He was of no help. He rudely informed me that it was probably permanent and was caused, he felt, by my Latuda, which I’ve been successfully taking for some time now. He also told me he wasn’t going to prescribe me anything new because he didn’t want me to go to the ER again for it because it would get him black listed at the hospital. I don’t know if he meant that there was a real black list, but he acted as though there was.

I asked to see a neurologist. After some maneuvering he agreed and picked a random one out of the directory and sent the referral through. I don’t think he thought that a neurologist would be of any help. Then he prescribed one of the medications I’d already tried for the tick. The problem with that is I’ve lost track of which medication caused which reaction or positive outcome.

I got ahold of the neurologist on my own and they could tell I was in crisis and tried to get me in earlier than the July dates that were for new patients right now. The helpful lady called me back the next day and sadly told me that they refer ticks to the mental health people and would I like their number? I told her I had it already. She was nice.

I had an appointment with my counselor this morning. Unfortunately, I locked myself out of my house and out of my car. I texted my eldest daughter and begged for help. She left class early and came to my rescue. I did happen to have some homework with me so I spent my time waiting for her doing that.

When I got back inside I called my counselor and got through! I asked her if we could do the appointment on the phone. She was great and agreed. My tick was at about a 5 for most of the visit although sometimes it got worse. She listened to what I’ve just recounted to you of my last few days and weeks and said I need to talk to my med provider ASAP. She put me on hold and went looking for her. Amazingly she found her and she was free so we stopped our conversation short and I waited for Sara, my med provider, to call me momentarily.

The call from Sara came right away. I went over all the stuff again and through asking questions about what new prescriptions I’ve started taking in the last month. I started a medication for restless legs (which worked!) and Lyrica. She has me discontinuing the Lyrica (which is funny because we’ve been fighting with my insurance for months to get it approved) and the last med that my MD had me start taking for the tick. Then she did some research and found out that indeed Lyrica can cause the tick and so can Latuda, which I’ve been taking for some time. Now were stopping the Latuda. I’ve just gone from 120mg to 80mg tonight. Last time we tried to lower my Latuda was during the Christmas holiday and it didn’t go well. Instead of being well medicated and under control, I began to have violent emotions and lashing out at my loving family. It didn’t feel great. But here we are, trying it again. I’m going to have to watch myself.

So now were taking action. I feel better about it. I see Sara on the 11th I think. We’ll reevaluate my condition at that time. She’s not happy with the way this has been handled. The ER should have referred me to my med provider, not my MD.  My MD couldn’t give a shit. I’m looking for a new one. Around here it’s really hard to find new ones. New patient appointments have waiting lists going out months. It’s frustrating.

I’m a communicator. It’s what I do. I am fully involved in all my classes. I can’t do that right now. It drives me crazy. Sometimes I raise my hand thinking I’m going to say something brief. Unfortunately, it turns into a long ordeal as I stutter and tick my way through what I want to say. Sometimes the friend I sit with tries to finish talking for me. It’s embarrassing. I know there’s nothing to be embarrass about. It isn’t my fault I can’t control my mouth. Thankfully I can control the content of what I want to say.

I’ve been using my situation to really make sure that what I want to say will really be helpful or ask a really good question.

My kids have been good about it. They laugh at me when it gets really bad. I’m glad. I can’t take it too seriously (though god knows it is). They help me keep my chin up. And, thankfully, they translate for me. Seriously. Even when I’m just talking to them they have to finish my sentences for me (when I’m at a 7 or higher). I’m thankful for my kids, my mom and my brother for their patience in waiting for me to struggle through a conversation.

So, maybe the next few days will be better. I’m not going to class tomorrow. I’m going to work on calming down. I need the time to rebound and relax. I have a ton of homework to do so I’m going to give myself the time to do it. Lowering my stress can only help my situation.

If you find yourself in a similar situation remember that freaking out doesn’t help. Well, doesn’t help much. Sometimes you get like I did and can’t talk at all and they take you seriously. But, in general, it’s best to persevere and keep bugging people, doing research, calling anyone you can think of till you find the right person to talk to. Now, I hope it works.

Tonight, as with the last two nights, I’m up late with back problems. It’s like all the nerves in my lower back are firing at the same time. I can only describe it as sever lower back pain. I take Oxycodone for that. You’d think that would help my tick and the stress associated with it. Nope. Nada. Zilch.

Sighing…. This tick seems like such a waste of time. I was thinking of getting a summer job, but that will never happen with this tick.

I’ll let you know what happens next. I’m afraid of myself. I’m afraid my Bipolar is going to come raging back like it was in the past and torment me. Hopefully I can use the tools I’ve learned since my last crash to keep me from going into crisis but you know, if it’s going to come, it’s going to come. I can’t stop it. But I can combat it.

So here we go, on my first day with my Lyrica gone and my Latuda going down. I have to admit, I’m more than a little scared. What if I flip out? What happens if the tick becomes permanent? What if? What if? What if? What if I get better?

My back is feeling better now. I’ve sat on ice and now the heating pad. Time to try to go to sleep again. Good night my friends. May you be able to speak your mind wisely and with confidence.