26 ECT visits – 5/2023 – 10/2023
Next Stop Electroconvulsive Therapy (ECT)
The following outlines my personal experience with ECT. This will be from the initial contact with the provider’s facility through the end of treatment and beyond.
I have included suggestions that may aid you through the course of treatment. These are the items that I wish I had known prior to my treatment.
If you have not read my prior ECT post, please do so before reading further. This will provide you with a more generalized look at ECT and will put this post into perspective. The post entitled ‘ECT A Great Idea for Treatment Resistant Depression’ can be found here.
The Provider Search
After not having positive results with TMS treatment, my next stop was ECT (electroconvulsive therapy). Unlike the speed at which I was able to begin TMS sessions, ECT took more time. My first order of business was to find someone who would administer the ECT treatments on an outpatient basis. As luck would have it, I found a mental health facility in my town that offered the services for treatment resistant depression. I reached out to the practice and received a call back on 1/4/2023, to schedule a consult. I was floored when I was told the earliest appointment they could get me in was on 3/27/2023. I’ve been struggling with the depression for over 10 years, so what’s another 3 months or so.
Your ECT Champion
First and foremost, find your champion. A Champion is someone you trust whole heartedly. Someone who has your back in all areas of life. Someone who will support you throughout your ECT treatment. This may be a spouse, another relative or a good friend. This person will be actively involved during your course of treatment.
The Consult
Be sure and bring your Champion to the consult. On the day of the consult, I was given the Montreal Cognitive Assessment (MoCA) as a baseline for memory/cognitive functioning. This test takes about 10-15 minutes. I imagine I was given the PHQ-9 to determine the severity of depression and whether I would be a good candidate for ECT. Honesty, I don’t remember taking either of these tests. This brings me to one of the potential side effects that go with ECT. A big one. Potential memory loss. For me, there was no potential about it. We’ll get into the details in a bit.
After I was deemed a good fit for ECT, we would begin treatments at 3x a week.
How Does ECT Work
ECT treatments work by passing an electrical current through the brain to invoke a seizure. This is thought to cause a reset of the brain’s neural pathways thereby removing or decreasing depression symptoms.
Scheduling ECT Treatments
The scheduling of treatment involves the hospital (scheduler), the doctor(s) who administer the ECT and yourself. Appointments are set a week in advance. The scheduler will call the patient and the two will confirm the appointment dates. The patient will arrive at the hospital the same time for all their sessions so only the number of times a week may change.
The challenge is that the physician’s office and the schedular may not always be on the same page as to the number of visits you require each week. For example, if the physician tells you you’re moving from three treatments a week to two, the clinician may not have told the schedular. More than once I had to advise the scheduler of my most recent treatment plan. Just be aware.
Schedule Check-Ins
It is important that you schedule check-ins with your ECT doctor and your Champion. Your Champion can truly see how you are progressing throughout your course of treatment. Your mind may be cloudy so it’s imperative that your Champion be involved. Did I do this? No. Well, once. I’d suggest doing the doctor/patient/Champion check-ins more than once. A check-in every 2 weeks would be my suggestion. That would have saved my wife and I a great amount of time and in all likelihood would have resulted in fewer treatments and therefore, less side effects.
Times Per Week
I first started my ECT sessions at 3x a week. These were decreased over the course of my treatments to 2x week and finally 1x a week.
Unilateral vs Bilateral
You will start your treatment with unilateral sessions. If there are no signs of improvement and you tolerate the procedures well, the doctor may switch you to bilateral sessions. Bilateral or Unilateral ECT refer to the electrode placement on your temples. Bilateral treatments will give you more of a jolt, as the electric impulse is happening at two locations as opposed to one.
The Day of Your ECT Treatment – The Experience
The Arrival
When you arrive at the hospital you check in and wait for a nurse to come and get you. Next, you are brought to the day surgery pre/post op area. A nurse will take your vitals and your weight. They will also insert an IV needle. You then change into a gown and are given socks. As for pants, I always wore sweatpants. They need to access your leg so they can attach a blood pressure cuff while you’re undergoing treatment. The sweatpants allowed for easy access. Regarding the socks, I have 26 pairs of hospital socks as mementos of my treatments. That’s a lot of socks.
You then wait to be called and are walked to the day surgery area (holding pen). This is a large open space of hospital beds. This is where you will have your ECT treatments.
Nurse
As the nurse walks you into this area another nurse will point you to a bed and that’s where the excitement happens. Depending on who else is scheduled for ECT that day will depend on the number of beds needed/prepared. The max I ever saw was 3 patients including myself. Other times it was just me.
Anesthesiologist
Next the anesthesiologist arrives along with an anesthesiologist assistant. They verify that you haven’t eaten or drank anything since the prior night as my appointments were in the early morning. You can take a sip of water with meds in the morning if needed. The anesthesiologist will devise the cocktail that will put you to sleep as well as a muscle relaxant. Remember, they are invoking a seizure. You want to be asleep and be relaxed so that bones are not broken.
Physician
Finally, the doctor administering the treatment arrives. I had two who would come on different days of treatment. The doctor will ask you how you are doing. Be certain to tell them how your depression is. Whether it seems better, getting worse or no change.
The Procedure
Next it will be showtime. The doctor will ask one last time for you to verify your name and date of birth. An oxygen mask will be applied. The anesthesiologist will do his thing and release the anesthesia and once asleep, you will be given a bite block to protect your teeth during the procedure.
When you come out of anesthesia, you’ll be allowed to wake up a bit prior to heading back to the nurse’s station in the pre-op/post-op day surgery section of the hospital.
When To Stop Treatment and When to Continue
Don’t go blindly by what the Doctor sets as your treatment dates. Example, one doctor told me that we should look for other treatment options as I was not getting results from ECT. I assumed; they would start weening me off treatments. I went with the flow. Slowly they cut my times back. 2 visits for X number of weeks. Then 1 visit for X number of weeks. These sessions seemed to go on forever. Remember, you’re not going to have all your faculties during treatment so you need to have someone to speak up for you.
When your Champion starts questioning the number of visits and length of the program, listen to them. Don’t assume the doctors are on the same page if you have more than one. If I hadn’t asked the question, ‘when can we end this,’ I might still be going. Also, when your doctor asks how you are doing, don’t do an obligatory good or ok. This is the thing, while you’re going through treatments you won’t really know how you’re doing and that’s the importance of your Champion. Everyone will be different, but this was my experience. The doctors may see ‘good’ or ‘ok’ as a sign of improvement. When in actuality, you are still suffering.
Doctor’s Discharge Summary
Another thing to watch out for is what the doctors write in their notes that wind up on your hospital portal/chart. During one of my first visit’s, the doctor wrote that I cried after my treatment and then asked me if I was happy. In my stupor, following anesthesia, I must have said yes. I’ll tell you one thing. Those were not tears of joy. They were tears of sadness. I could not believe that it had come to this modality in an effort to reduce my depression.
Always get a copy of your discharge notes and review them with your Champion. I had declined receiving my discharge notes as I didn’t know my doctor’s notes were included. Review the discharge notes from every session with your Champion.
If you find that the doctor’s notes are different than your experience, call them out. Bring the discharge notes and explain that the entry is incorrect. If you are not seeing improvements, you need to say, ‘I don’t see an improvement.’ Don’t sugarcoat things when they ask how you are doing and don’t let them belittle how you feel. I expressed memory issues where I would watch a television program or movie knowing I’ve already seen it and everything was new to me. I didn’t recall ever seeing the show/movie. The doctor’s response, ‘That happens to me too and I am not receiving ECT.’ Make sure the doctors note your concerns in the discharge notes.
Your Champion
Remember, during your course of treatment, it is best to have your champion with you when you try to explain things to the doctor. My challenge was that I believed the doctors would take the initiative and start weaning me off the ECT treatments when one of my doctor’s said ‘we need to look for alternative treatment options.’ Listen to your Champion. If they say you should stop treatments for lack of improvement, bring them to your next session and have them speak to the doctor so that a formal course of action can be set that day. Don’t assume the doctors will know when to end treatment. Again, listen to your Champion. Keep in mind that the more sessions you have the more chance of side effects. For me, the main side effect was memory loss.
ECT and Memory Loss
The doctors explained that during my treatment, the ability to create memories would be affected. This was more than evident for me when my daughter came for a visit from out of state. I have no recollection of this. Also, my wife’s uncle passed away during my treatment period. I went to the wake and funeral and remember nothing. Do not make any decisions regarding your affairs, i.e. wills and so forth during treatment. Even though you seem to have your faculties…you may not.
You do sign a waiver that includes short term memory loss. Although I don’t remember signing it. There was also one for anesthesia that you may have to sign a few times depending on the length of your treatments. These would have been done prior to any treatment obviously so to say that memory loss is short term would be inaccurate. To this day, 7 months after my sessions ended, I still have to ask my wife what the audible book we listened to last night was about.
Neuropsych Testing
I had neuropsych testing recently that was ordered by a neurologist. This was 3 hours of a series of tests that are done in one sitting giving insight into how the brain is functioning. I initially saw the neurologist for tremors: hand shaking, wrist and ankle twitching. I also had balance issues which resulted in falls. None of this occurred prior to the ECT treatments. He suggested that this type of testing should have been done prior to the ECT treatments to gauge the level of impact the ECT treatments had on me. Sidenote…this testing is not cheap.
The end result was that My PCP, Neurologist and the Psychiatrist from the neuropsych testing facility all said there’s nothing they can do and that it may take up to a year for my memory to come back. If it comes back.
Notable Suggestions for the Patient
- Get a Champion – someone you trust whole heartedly. Someone who has your back in all areas of life. Someone who will support you throughout your treatment. This may be a spouse, another relative or a good friend.
- Schedule periodic check-ins with the doctor administering the treatment(s), yourself and your Champion.
- Obtain All Release Notes from the hospital and Review Them with Your Champion – note anything that is Inaccurate.
- Do Not Make Decisions while you are receiving treatment such as signing any legal documents.
- Do Not Let the doctors belittle anything you say
- Discuss your treatment with your referring provider. Schedule check-ins.
Pros – For me there were none other than obtaining a ridiculous amount of hospital socks
Cons – The Aftermath of Treatment
- Memory Issues (short and long)
- Speech Issues – Unable to complete sentences. Can’t come up with the words in a logical order.
- Balance Issues – falling, dizzy when standing
- Tremors (ankle/wrist – twitching)
- Spelling – Forgetting how to spell words.
- Math – Forgetting basic math skills. Such as calculating a tip correctly or adding the tip to the amount due at a restaurant.
- Forget what words mean.
- Forget how to write letters in cursive.
- Shaking – hands
- Unable to come up with words.
Summary
Each patient’s experience with ECT and the ultimate outcome will be unique. Although the ECT treatments did not yield a positive result for me doesn’t mean the treatments will not work for you. The main thing when considering treatment are the potential risks that have been noted above. Although some of the items above are intermittent, they are not something to overlook when making your decision to have treatment. When you go to your initial consult please do so with a list of questions; including all potential side effects. The above side-effects were what I experienced and will be different for others. Also, be sure and bring your Champion to the consult and all subsequent meetings. Once you start treatment, you may not remember even having a consult.
Would I do it again, knowing what I know now? Sure. I’d just use my snippets of suggestions along the way. For me, the potential of having a positive impact on my depression was worth the side effects. I hope this helps in making a more informed decision when considering ECT treatments.
DISCLAIMER: The information provided above is for informational purposes ONLY and should NOT be taken as medical advice.
