Editor’s note: Corinna dictated this blog, with some difficulty, as she is undergoing a painful recovery from an accident and cannot read without pain. She will not, therefore, be responding to comments, though she will read what she can. There will be more blogs to come from her on thoughts about coercion, and her initiatives to provide alternatives.
Last night, as the antipsychotic floated into my bloodstream for the first time in about four years, I could feel the pains and worries of my various physical issues and life stressors and trauma. All that pain started being a lot less important. I thought; I could use a little bit of anesthetic for a while.
I’ve always thought psych drugs are like opiates for physical pain. We as a society, sometimes at least, think that opiates for physical pain should be used short-term. They don’t solve the problem, they are dangerous, they are addictive, but at least they can give you some distance from the problem in order for you to get some time and solve the root cause of the problem. And if we use psych meds like that they are great drugs. They are better sometimes than street drugs if they’re used like that; temporarily, and fully-informed.
People hassle me for being anti-medication, and I always tell them I am NOT anti-medication; I am pro-fully-informed choice. But people like things black-and-white. They see me as being against medications, and so I’m telling you why medications may have saved my life yesterday, or at least saved me a whole bunch more trouble.
This morning I am still out of energy and fighting off another meltdown. I need to go lay down. But I feel I’m holding it together slightly better. I’m trying to enjoy the last dregs of excess wired energy that’s like free coffee that I didn’t drink. You know; brain injury is really really hard. And for the first two years of brain injury recovery I did more or less OK, emotionally.
When the energy fell off the cliff, and I had to lay down – as is normal for brain injury – I just laid down, and for the most part didn’t get trapped in the pity parties. But now my working theory is that some of the vestibular or inner ear rehab has stirred up some of the limbic system issues.
I was starting to have suicidal thoughts come up a lot more often than I’m comfortable with. I was trapped in a loop where the less I was sleeping the harder it was getting to sleep. My usual hammers for breaking the sleep cycle – Trazodone used like once a week and sometimes Ativan, used like once a month – those hammers weren’t working.
But the Pdoc gave me some Xanax, which works better for me anyway. She tried to get me to take other stuff, but I told her those make me fat (for the propranolol) and agitated (for the benadryl). She argued long and hard but I talked her into the Xanax by agreeing to take a very low number of pills. I told her just write for 15 pills, it’ll last a long time. She wrote for just 10 pills, which lasts me for more than the whole month anyway. (I forgot to congratulate, her but it’s nice to see a doctor be conservative with benzos.)
You know, I still feel sick. I’m still kind of scared. but I got a whole lot of people to rally around me. Before my appointment I texted about 30 friends and told them I was scared but I knew I had to go back into the lion’s den, & I hope the Lions wouldn’t eat me. I got back some amazing short text answers. I called enough friends to find a support person for the appointments, including one good friend who was willing to break up her Rosh Hashana holiday. I got five different people who came in during my appointments to support me. It was a very scary process.
It is very hard for a psyche survivor to go back into the mental health system. I tried 3x to cancel my ride. I told her we should have done it next year. She said no, we need to do it now. And she was right that we needed to do it now.
Afterwards a lot of friends told me they were proud of how I handled it. I don’t know how I handled it except to simply go in. I guess they were proud that I asked for help when I needed help, and that I had figured out that I had needed help. The suicidal thoughts were coming more and more often and were kind of of starting to turn into plans. (Not that I told the doc that – I know better.) And the hallucinations were getting more and more and I was losing track of space and time, and forgetting to eat. And my sleep had gone from 6 to 5 to 4 hours a night.
And the meltdowns – the limbic system stuff – stirred up by the vestibular rehabilitation on my smashed inner ear; those meltdowns had gone from zero for 2 years to 1 – 2 – 3 a day. That’s where I got tired and just laid down in a ball and started crying and feeling hopeless. I knew that wasn’t me. That was some part of my brain that was broken and trying to heal. And it was not broken by a disease process, it was broken by falling 15 feet through the air at 25 miles an hour on to the side of my head. Just as with the rest of my brothers and sisters that may be temporarily broken, it is a life situation; like grief or trauma or an existential crisis, or not enough social support or too much bullying .
I guess I could have simply gotten a lot more sick. If no one had taught me how important it is to monitor my sleep I probably would have gotten more sick before I figured out there was a solution, although I was terrified of that solution.
I know that I am using drugs short-term, fully informed, as a temporary anesthetic – just to give me distance from the emotional pain so that I can solve the root cause of my problems. Which will be more vestibular rehab, a year more of vision therapy rehab and limbic system rehab.
The three things I noticed, that really stuck out at me after going through this experience are that I went from more or less ok to more or less really not at all okay, and only for 5 days. That’s a short window. And also there is knowing the triggers to watch for the red flags; the suicidal thoughts, the hallucinations, the lack of sleep, and the meltdowns. I knew all of that was not me, just not at all who I am, and I knew that they were all signs something was wrong. But how many people know that? Know the difference between themselves and these outside things that are basically reactions to trauma or life situations?
I think this right here is the cost of coercion. Once someone has experienced this whole mental health system as harmful, as further erasing the lines between internal and external forces, how do you ever go back?
I used to call the crisis line all the time, back in my days of being a mental patient, but then one time they hauled me off in cop car in handcuffs. I never called a crisis line again, and I made several more attempts after that. One act of coercion can cost someone the ability to voluntarily seek help for the rest of their lives.
It was intensely difficult for me to go back into services that I perceived as harmful in the past. I wonder how many people have had negative mental health care experiences and will never go back.. The trauma work and team-building and support-gathering I had to do to be able to go back was a lot of work.
Plus; I had friends on the inside. This is not case for many people. There are many people out there who will never go back. I thought I never would. I asked my friends to come with me so I did not view myself as a failure or a cop-out; just someone using painkillers.
You know; just like opiates can give someone distance from physical pain so they can do physical therapy to fix their back. But the drugs aren’t fixing a chemical imbalance, they aren’t treating a disease, they are just a pain killer. And sometimes you need a little bit of help from the pain. Life hurts sometimes. This two-and-a-half years of brain injury rehab has been very, very hard. So when the antipsychotic seeped into my system last night, I was glad.
Hey Corinna, I’m glad that you are doing whatever you need to do to stick around. I’m sorry to hear that recovery from your injury has been so difficult and I wish you continued healing. As far as psych drugs, the comparison to opiates makes sense to me. I will personally never go back, but I definitely don’t think you are failure or a cop-out for doing so. You seem to be making an informed choice. Best wishes.
Now *this* is how to use psychiatric medication – on YOUR own terms. No tricks, no lies, and no heavy-duty interminable pill-popping. Corinna isn’t “managing” some imaginary “brain disease” called schizophrenia/bipolar/borderline personality/etc. She is softening the physical and emotional blows of a serious injury for which she is receiving appropriate care. Psychiatry is NOT replacing real solutions for the problems which were caused by a fall that nearly cost Corrina her life. Her humility, flexibility, and initiative to create a strong support system that includes psychiatry, but not to the exclusion of a wide variety of other formal and informal treatments, is an inspiration to me.
You have precisely nailed the situation with meds as it pertains to Corrina.
On a related note, I am choosing to take Provigil for various reasons which I obtained from a regular doctor. But in no way does this mean I have a bogus mental illness and it is on my terms as you excellently point out Corinna is doing.
Corinna, thank you for a great post and much continued success in your recovery.
I don’t think I’m one to judge another. You own your body so you know better than anyone what’s right for it. Although sometimes when I point out to those still “in” that there are indeed alternatives, well, just that, choices. Personally, if I were to ever take a psych med again, I wouldn’t want to see a shrink to get the pills. I’d get them illegally if I had to, buy them on the street. It’s not the pills, it’s the power and behind the prescription, and the dependency it all leads to. Without power, dependency, and diagnosis, the spellbinding effect is greatly reduced.
Get well soon. Take care of the noggin.
Thank you for sharing what you are going through…As with many other friends and peers, I am in your corner. I have always believed that meds can be a helpful tool, as long as we are given accurate information about their benefits and drawbacks. The system is a big part of the reason people don’t ask for support when they need it…as you said, One act of coercion can keep a person from ever seeking services again…My belief is we need an approach similar to Needs Adapted Treatment or Open Dialogue that respects the process, tolerates uncertainty and keeps the person of concern in the driver’s seat of his/her life and decisions…Your sharing is so brave and so helpful to all of us…rest and be well…we will be thinking of you
Thanks Corinna, this is a great post. It makes an awful lot of sense to me.
I quit psychotropics because they were giving me funny (peculiar) heart rythm but by that stage they were not even psychotropic (they were only anti histamine).
The effect was that my sleeping was reduced and I found myself scratching a lot more, but my ‘nerves’ were better (and my heart returned to normal).
My prescription is still active and I’m tempted to prove to my GP that the drugs cause heart rythm problems (I’m 55) – but the problem is I might have a heart attack instead!
Thanks again, ‘medication’ is a pertinent subject.
Get well soon, dear Corinna.
Such an exquisite and brave example of self-care and self-agency.
Very best wishes and light to you, Corinna.
You don’t have to justify your use of drugs to anyone. You’re an adult and you’re taking decisions for yourself. That’s what we’re all asking for. Take care and get better soon.
Informed consent is a good thing.
Informed Consent for psychiatric treatment
I don’t know why some people have to equate ‘anti psychiatry’ to some sort of war on drugs.
To me ‘anti psychiatry’ is about human rights in the field of mental health, including, but not limited to, full informed consent regarding the medical legitimacy of psychiatric diagnosis, the risks of psychiatric treatments, the right to all available medical alternatives, and the right to refuse any treatment considered harmful.
You are a lioness and have always been one of my heroes after I heard your spoken word poetry in 2011.
Nothing will change that.
Thank you for sharing your experiences both good and bad. My heart goes out to you, especially as it regards your vestibular condition. Based on my husband’s experience after smashing his eardrum over two decades ago, there are no words to describe the suffering people with inner ear conditions often routinely experience.
My husband experiences tinnitus that ranges from a faint hum on a good day to the roar of a freight train on a bad day. From I can gather, most voice hearers enjoy breaks from hearing voices but people with tinnitus often never get a single break from the constant sounds produced by their brains/inner ears. My son has a milder case of it and he uses a fan at night to create ‘white noise.’
People with inner ear disorders often routinely experience debilitating bouts of vertigo to the point where they do involuntary face plants, not as sudden as seizures but they are completely unable to keep themselves from finding the lowest place possible where they cling to the earth.
They often go down including in public places like airports and train stations unable to get up for hours, even with assistance. The vertigo affects more than orientation to place and time; it has psychological impacts too, causing a sense of doom, terror, and extreme hopelessness. There are simply no words to describe how horrible it can be. My heart goes out to you Corinna. Sending all my love and prayers your way.
And did I forget nausea? Inner ear disorders are horrible horrible horrible and medical science has no cure for most of them.
Brave post Corrina!
I think it’s sometimes forgotten here on MIA that, despite the obvious problems with psych meds (as well as the lack of solid science behind psychiatry as a whole) that many people depend on these meds simply to function in daily life – to stay out of jail, to hold their jobs, to keep their families together.
No, meds are not perfect – far from it. But for many people in today’s world, they can be a helpful tool.
So until a new solution comes along, I don’t think psychiatry will be disappearing anytime soon.