Investigating ECT

Yesterday I had a consultation with a local ECT specialist.

ECT (electroconvulsive therapy) is generally considered a last resort treatment for people in severe manic or depressive states whose symptoms have not responded to medication. The procedure works by producing a controlled seizure in an anesthetized patient by means of a low controlled electric current passed through the brain.

I can probably guess what you’re thinking at this point, and yes… it is a serious procedure. Though this form of treatment has undergone significant improvements since its early usage it is still highly stigmatized, even by many of those within the mental health community. At the same time, it is one of the few “proven” (i.e. studied) treatment options for people who experience severe symptoms that do not respond to medications (like mine).

I also feel inclined to note that I have not made any solid decisions regarding this form of treatment yet and I still consider myself to be in the investigative phase.

Thus the consultation.

Frankly, I am not sure why I was so nervous heading into my appointment. I knew I wasn’t headed toward receiving ECT yesterday and I have generally reached the point in my  life where I don’t let doctors boss me around anymore. Still… I guess I was worried that, like most doctors, this one might try to shove his agenda down my throat without letting me make an important decision like this on my own.

Turns out I was completely off base, and the man I met with (a psychiatrist who I believe I may have encountered while hospitalized in 2011, though it is hard to remember) was extremely straightforward with me and seemed genuinely empathetic to my situation. Those two qualities are ones that I look for in particular from my healthcare providers, and after talking with him for 45 minutes to an hour I was convinced that if I were to receive ECT treatment he is someone who would genuinely do his best to help me. That was a breath of fresh air, let me tell you!

He told me the treatments would be 2-3 times a week for 6-12 treatments (depending on how I responded) and though the procedure only takes 20-30 minutes, the anesthesia would require me to spend about three and a half hours at the hospital. He performs the procedure in an outpatient setting, which is what I would prefer. My regular psychiatrist gave me the option of speaking to someone at a hospital much closer to where I live but they would require me to be inpatient during the entire course of the treatment which sounds, frankly, like a huge bummer to me.

I was surprised when he told me flat out;

“There will be nausea. There will be headaches. There will be body aches… but those are all things we can treat when they happen.”

No “might-be”s or “possibility of” side effects talk from him, which I also really appreciated. He has been doing this work for a long time, so he knows the routine and had no need to beat around the bush.

When the topic of memory loss came up, he said, somewhat forlorn, that that is not something that can be treated when it occurs and short term memory loss (being able to remember things from years ago but not what happened twenty minutes go) is pretty prevalent for people who have received ECT, but the memory loss he has seen has improved and dissipated within one month to six weeks after the treatment.

Obviously that is the big-scary when it comes to ECT (for me anyway) but again, I appreciated that he was up front about it.

One thing he told me that I didn’t know about previously was that ECT performed on bipolar patients for a depressive state can (rarely) trigger mania.

He said that for his depressed bipolar patients the procedure had a 70% success rate of reducing depression, however there is also a 40% relapse rate within 2-6 months after the procedure (which may require patients to undergo “maintenance” ECT sessions once a month or every few weeks).

Walking away from the appointment, my biggest concern was that he told me I could not be taking Lithium while having ECT (something I never heard before), and though the 1200 mg of lithium I am on is having no positive effects for me anyway, I am a little nervous about coming off of it because I had a hell of a time reaching my current dosage. With the prevalent side effects I experience, it isn’t uncommon for me to experience side effects when reducing or coming off a medication (in addition to going up or starting one).

After looking into the lithium/ECT issues when I got home it seems that research about mixing the two has not been completely straightforward (some studies have shown it works out fine, others have had big problems) but it appears that if lithium is something that even could cause a problem I certainly wouldn’t want to risk it.

Basically, my goal with this consultation was to speak with an ECT specialist and see if this is something he would recommend for me. Honestly when he heard I had already tried 14 medications with no luck (and some doctors refer for ECT after only 3 medications not working) he told me that while he considers me to be a good candidate for the procedure he wants to give me plenty of time and resources to help me think about it.

I told him flat out that even though I have been experiencing several months of worsening depression at this point, I consider ECT to be something of a last resort. It is important to me to learn what I can about it now, because if my depressive symptoms start getting worse (and trust me, they aren’t particularly hunky-dory now) I know I can enter into a place where I would trade my soul to the devil for one small moment of relief. There are definitely situations I can foresee where ECT will be on the table as an option, but I don’t want to leave that decision to a moment where my only deciding factors are based on desperation and not reason.

His response was not what I expected.

“Well, I really hope your depression lifts before then.”

As it stands now, he is scheduling three weeks out, which is a significantly shorter wait time than I expected honestly. That might increase once winter comes on, but knowing that I have ECT as an option with a relatively short wait time (at least, for mental health services in the Pacific Northwest) gives me a bit of solace.

Of course, I got home and had more questions… but he gave me his phone number and said I can (and should) call and ask him any more questions I can think of.

Despite the terror I felt walking in, I left the appointment feeling slightly optimistic. I am in no rush to make any decisions, and I am proud of myself for exploring this before the depression turns my brain into oatmeal.

Or, at least, overcooked oatmeal.

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32 responses to “Investigating ECT

  1. this is an extremley interesting find

  2. I’ve considered this treatment too, but at a certain point I also believe that environmental and social factors be carefully and thoughtfully considered before I committed to such a treatment. Are employers and society conscientious of the Americans with Disabilities Act provisions, or is my medication and treatment primarily serving to placate social desire and ignorance of non-neurotypical personality types. That said, if the illness has progressed to a state where the whole body and being is affected, the other non-psychological effects of bi-polarity rarely discussed, perhaps a radical departure from standard treatments is required.

  3. Once when I was hospitalized for suicidal ideation, caused by severe depression, I was forced to watch a video about ECT. No doctor talked to me about it in great detail like the doctor that you spoke with. All I saw \was that video and the zombie like people walking around that had had it done. I didn’t think it was right for me, but I hope you can find the right answers for you and do what works for you. I wish you the best on your journey. I think you’re doing the right thing by getting all the information you can before making the decision that is right for you.

  4. My mom and her pdoc are talking seriously about ECT for her. She’s not technically bipolar, but she takes mood stabilizers as well as antidepressants, including lithium. I’ll have to mention that to her if she chooses that route, although I’m sure someone else will tell her if they are responsible doctors at all.
    I hope you experience relief before long. If not, I hope you are brave and go with your gut instinct. The important thing is to feel better. Some compromises are worth it if they can lessen your despair. Good luck. 🙂

  5. This is an unbelievably courageous post. Several times this week your blog has gotten me to shut up and take deep breaths and reconnect. Thank you.

  6. That definitely sounds like as positive a consultation as one could hope for. 🙂

  7. princess marksalot

    40% relapse rate? Bummer! I too really hope your depression lifts before then!

  8. It totally saved my life….no body aches or nausea either. I am proud of you for doing your homework. Good luck!!!

  9. Oatmeal is supposed to be good for you 🙂

  10. I had 7 ECT’s in the 1980’s. I now respond well to Lithium and am able to work as an artist at least some of the time….

    • Some medical data wrt responding to Lithium: the therapeutic range is .8 to .1.2 ppm. This is determined from your blood testing at a lab as administered by your doctor on an ongoing basis. However, my body was very effective at metabolizing (and expelling) the compound and even 2000 mg per day was not enough to get to the therapeutic range. Of course by the time you attempt to exceed 2000 mg per day you have other adverse side effects and those are highly undesirable. Not sure how ECT will change that, so Lithium response is not a deciding factor unless you can effectively target the desired parts per million without undesirable/toxic side-effects AND there is other evidence your doctor would give you to support this conclusion.

  11. I just recently heard about it. I’ve started watching the series Homeland and the main character has BP. She went through it and it seemed to help. Doesn’t mean I’m taking advice from a TV show but it did expose me to it and gave me a glimpse of what it might be like. I’d do just about anything to feel normal. I wonder what it does for the mania? Does it go away too? I’d rather it didn’t because I have some pictures that need hanging on the wall.

    • I have heard that sometimes it is used to bring patients out of a manic episode that wont respond to medication, but “when being treated for depression ECT can often have a mood-stabilizing effect.” Personally, I’m taking that “mood stabilizing effect” bit with a grain of salt though.

  12. It’s a big decision to make. Good luck to you.

  13. This may be off topic, but I want you to know that I’m a lurker. I read every post via email. I really appreciate you and your candidness. You’re not alone. Good luck

  14. My Pdoc is recommending I consider ECT and frankly it scares the you know what out of me. The memory loss is the biggest side effect that worries me. I commend your courage to look into the treatment as it still has such a negative connotation in society. I too suffer from depression and have tried over a dozen medications with little to no relief. Once I told my Pdoc that I was scared of the treatment he also recommended Transcranial (sp?) Magnetic treatment. This seems to be a less invasive treatment. My Pdoc told me one doctor is performing Ketamine treatments on patients who have failed ECT. There seems to be positive feedback about the Ketamine, you have to be on a longterm maitenance schedule to maintain success. Frankly I don’t know what to do. I thank you for your candid sharing of your appointment.

    • I would like to know more about transcranial treatment as well. It’s bleeding edge.

    • I don’t know much about the transcranial magnetic treatment, I believe there is one doctor here (in Seattle) that performs it but at a hospital that doesn’t accept my insurance. I know I’ve seen a few blogs here on wordpress that involve bloggers who have had the procedure, it might be worth doing a search and finding out what the experience has been like for other people.

      As far as the ketamine treatments, I read about that when they were still in the research phase, however I hadn’t heard they were beginning to administer said treatment. That definitely sounds intriguing and would be something I would consider, but I am a little bit wary of any treatment performed via injection (as once it is injected into your system, there is nothing you can do to stop any side effects until the dosage has worn off). I had an issue with a hormone injection that rendered me hospitalized with a severe mixed episode and I felt very helpless knowing the only thing I could do was wait for it to wear off several weeks later. I realize that is a different kind of situation, I guess I just like the idea of having the kind of control where I can pull the plug whenever I feel like it. Even so, I will do a little more research and check that out. Thanks!

      • Ketamine just ended a ten tear double blind study and the follow-up I have received says that they are looking for a different but similar compound – but that as is it has an amazing impact on depression. Enough to drive a black market like Dallas Buyers Club.

  15. Reblogged this on Friend to Yourself and commented:
    Excellent personal story, insights, and disclosure. Thanks for speaking out. We don’t hear enough about ECT. Keep on.

    • I recently asked a Dr. (after the first post) about ECT and TMS (Transcranial Magnetic Stimulation) which are both used for depressive states as opposed to mania. I also asked about Ketamine, and he said they were all “hihjy” controversial, which sounds to me like interested persons need to do research on NAMI’s website before speaking to professionals. Sounds like the doctor in the blog post was pretty good.

  16. What a great post! Very happy to hear you got to consult with a doctor who is willing to discuss ECT in such a straightforward way. One thing, if you have a chance to revisit the conversation: ask about ultra-brief pulse ECT. This uses a pulse-width of 0.25ms rather than the standard 0.5, it was a few years back but my partner and I treated many people successfully using this protocol with much, much reduced side effects, particularly memory problems. 0.25ms actually works better using a unilateral stimulation.

    I’m also happy to tell anyone here who wants more about Transcranial Magnetic Stimulation – so please let me know! (I just don’t want to seem pushy …)

  17. In response to William Sauve I am interested in what you had to say about dTMS vs ECT. I had told my dr. I was scared of the memory loss so that is when he recommended the tms. I am concerned about the long run and which treatment has the best track record for lasting and not requiring maintenance treatments. Just never know when insurance might end! Thanks for the in depth comment, I appreciate the knowledge.

  18. I have not had ECT, but I was epileptic for a decade, which amounts to having about a seizure or two a month. There is definitely some memory loss associated with seizure activity, but I would rather have that any day than my husband’s bipolar disorder, which causes him not to forget (per se) but to lack the ability to focus on small details. Between the two of us, it’s a wonder we get the grocery shopping done! 🙂 But the point in bringing all this up is that it took a lot of seizures over many years to get to this point. Eventually my epilepsy stopped but I know that there are types of thinking (like the ability to do calculus) that are now incredibly difficult- and they used to not be that hard. If I weren’t in the sciences, though, I would never, ever have noticed this as a side effect. You are making a huge decision and it’s a difficult process- but if I were in your shoes I would look at what is easier to live with, and what gives you the greatest benefit. You can work around memory loss pretty easily, in actuality, with lists and reminders and things like that. And if you are lucky, the deficits you’ll have will line up with the areas of your brain you don’t really use (like my calculus-doing section, wherever that is) and you may not even be affected at all in daily life.

    • EJ – sorry it took me a little while to get back to this. If you look on my website, tmsneuro.com – you can learn a little more about what we do, and you can direct email any inquiry you like. As far as ins. coverage for TMS, it is very different depending upon where you live, so it’s worth asking.

    • Thanks for this reply, it is really interesting! I definitely appreciate your insights. Take care!

  19. Does anyone here know if TMS is used effectively for schizophrenia?

  20. Pingback: When There’s No Room at the Inn… Chill in the Barn? | bi[polar] curious

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