From the first post: People often ask me about what treatments I have received for my mental illness. Good question. First and foremost, I have received many treatments – most have been ineffective, some downright disasters, and some have been life-changing. PLEASE NOTE: I am speaking from my own experiences. While I unpack my own experiences in these posts with the good, the bad, and the ugly of the treatments I have received, I try to explain what the therapies I received were intended to do, and what benefits/detriments people commonly experience while (or upon conclusion) of the therapy is being conducted.
In the first post I wrote on treatments for mental illness, I discussed the two most common forms of mental health treatments: therapy and medications. In this post, I would like to address other treatment modalities – namely, TMS, VNS, Deep Brain Stimulation, and ECT.
Electroconvulsive Therapy (or ECT for short) is often referred to as “shock therapy.” Since the movie, “One Flew Over the Cuckoo’s Nest,” shock therapy has gotten a bad rap. Is it warranted? Yes. And No. My personal experience? Bad, bad, bad. I believe I was given ECT, along with being prescribed incredibly high amounts of heavy-hitting anti-psychotics, more than anything, as a means of keeping me “under control” or compliant.
I believe ECT has a purpose. More specifically, I think it serves an important purpose for individuals who are not candidates for medications either because of advanced age, previous difficulties tolerating medication, or who need as fast an improvement as humanly possible. When ECT works, it’s generally faster than waiting weeks for a psychotropic drug to kick in.
Psychotropic drugs are either engineered to have an impact on, say, anxiety or psychosis or depression – additionally, there are medications that are recognized as having a positive impact on mental health and well-being that weren’t originally intended as such. A classic example is the fact that some anti-seizure medications do double duty in controlling manic episodes. The discovery that some “ordinary” medications help those with mental health issues? I call that a happy accident.
Prescribing medications to those with mental illness is probably one of the single most difficult doctor jobs out there. In psychiatry, one patient might respond favorably to a certain cocktail of drugs, the next not at all, and the third might have been responding, but no longer is. When I look back at all the “cocktails” I have been prescribed (and I am only scratching the surface because there are many, many cocktails I no longer remember at all), I see doctors grasping at straws to help a woman suffering from life-altering mental illness.
Back to ECT: if you have the time and a safe landing to try different medications, I strongly suggest you do so before resorting to ECT. Why? Because the reason that I am so anti-ECT is because of my personal experience with the potential (and major) side effect of memory loss. I lost more than a year of my memory. It may not sound like that big a deal, but I do not even remember my own wedding.
People have asked if that’s really such a bad thing – after all, it’s not as if it was a fun period of my life. Well, be that as it may, I believe that memories are a part of our soul, and I still mourn the time I “lost.” In addition, I developed gaps in my memory, losing random periods in my life. Now long-divorced, people assume it’s not a big deal that my wedding isn’t in my memory bank; as it was a major event in my life, I DO wish I remembered it, flaws and all.
One of my sisters, who had a wicked memory, could fill in the blanks for me (e.g., who came to my third-grade birthday party). When she died, it was as if I lost her twice: first as my beloved sister, and second as my back-up memory. It never occurred to me that I’d lose her so soon – I wish I’d asked her more questions, and committed more of what she told me to paper.
Clearly, it is a lesson to not squander a resource in the present by assuming it will last forever. I made a mistake and the Beast has never let me forget it. Do yourself a favor and minimize the Beast’s influence by not giving the Beast free rein to criticize your decisions.
TMS, or Transcranial Magnetic Stimulation is the new ECT. It, however, doesn’t require an anesthetic or even a tranquilizer. Conducted with the patient wide awake, it utilizes magnetic pulses to stimulate nerve cells in the brain. This non-invasive therapy is amazing – when it works. (Its biggest drawback is a bad headache.) There are new versions of this treatment on the horizon, which will hopefully be more effective. For now, it is not covered by insurance and is modestly effective. We tried dozens and dozens of TMS sessions, mostly because we noticed an improvement at the beginning, which, sadly, we could not replicate (wishful thinking, I’m afraid).
Two therapies for mental illness that are not often used at this juncture are VNS and Deep Brain Stimulation. VNS, or Vagal Nerve Stimulation, requires surgery to place a pacemaker-like device in the chest. It has a wire that runs to the vagal nerve and stimulates it, resulting in an improvement in mood.
Few psychiatrists offer the service of monitoring/adjusting the VNS device, and the fact this therapy requires surgery, are two major reasons that I believe it never quite caught on. Not to mention that there is the possibility of one’s voice becoming hoarse when the nerve is being stimulated, which could make even the most stoic individual self-conscious.
Deep Brain Stimulation is another invasive treatment for mental illness that is not very common, largely because it is not covered by insurance, not to mention that it requires major surgery. I passed on this not because I didn’t think it would work, but because I was afraid of what might happen should a mistake be made during surgery.
I decided that I preferred to keep the status quo as opposed to wading into uncharted waters. Smart? Stupid? I suppose one could argue it either way – I just know that I was never well enough convinced that the potential benefits outweighed the possible side effects.
My not employing VNS or Deep Brain Stimulation as treatment modalities has a LOT to do with my experience with ECT – while ECT can be life-saving (especially for the population that cannot tolerate psychotropic drugs) it is also a therapy with a checkered past, enough so that after going through more than a full course of treatment, I never wanted to try it again.
At one point, however, I decompensated to the degree that medications and talk therapy were not helping assuage a long depressive episode, and my doctor suggested trying ECT again. Being aware of my previous experience with ECT, he was very cautious in recommending it.
He gave two caveats: first, that they had changed the way they did ECT treatments, which had resulted in far fewer memory issues; and second, if I didn’t feel a difference after three treatments, he would halt all further sessions. The memory loss was minimal, but there weren’t any positive changes, so I stopped the treatments after the third one.
Being in control of the treatment(s) for your mental illness is key when battling back the Beast. To begin with, assuming you are able to participate in your care, having “agency” can be crucial in finding a treatment that works. Agency can be defined in this context as taking control of your course of treatment and is best embodied by active decision-making as to what form of mental health treatment is desired.
When people lack agency, a feeling of malaise can become paralyzing, and the Beast loves to insert itself between a person and their treatment. If the Beast weasels its way into your life in any iteration, do exactly what your mother told you never to do: talk back. Scream if necessary. Just do not sit idly by and let the Beast happen to you.
Now there is one caveat to agency I need to elucidate: if, and I mean IF, you are for whatever reason incapacitated, you will need to rely on others to make decisions for you – including what course of mental health treatment(s) you would like to have happen. It is crucial to have a mental health advance directive drafted and signed so that your wishes are known. Make sure that those close to you (especially those who are named in the document) know exactly where it is located. That way, nothing will get lost in translation.
Do NOT assume that the person(s) you name would welcome such a responsibility – it is imperative that you ask your designated person(s) if they have the time and the inclination to do such a thing. Once you have a person(s) who is willing to take over your mental health care if necessary, I would strongly suggest reviewing the document with them so that there are no surprises for either of you.
Whatever mental health treatment approach you prefer, do not be shy about sharing your preferences. The more that people close to you know about your wishes, the likelier they will be to honor them – a win-win for you if you become incapacitated for any reason. Just don’t let your wishes for your mental health treatment remain unknown. They are just as important as any of your other wishes!
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