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Catnapper

My ECT diary - first treatment on February 3, 2020

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I thought it might be helpful for me and others to post this online diary during my ECT treatment. Having said that, I'm not promising that I'll actually keep up with it, but I'll try.

I'm doing this on my phone, so please disregard my signature as it is literally years out of date. {Edit - My signature is current as of April 19, 2020}

First some background: I have bipolar II, had my first bad depression in my mid-twenties, followed by a few more in my thirties with no treatment. I was dx'ed with recurrent  MDD when I was 40 during my first psychiatric exam. The dx was changed to BP II when I was 49 (by a different pdoc, had moved for work), and a mood stabilizer changed my life so that I had seven years of remission. I'm 60 now.

I started going downhill again in 2015, and have been at various levels in the abyss ever since. In fall of 2018 I was to the point of non- functioning so took a two month medical leave. By the end of last summer I was no longer functioning again, so am out on another medical leave. The medical leave was also for knee replacements in September and December, which I don't recommend doing during a depressive episode.

I'm not sure I'll still have a job if and when I get better since I used up the FMLA time period in December. 

On to the actual ECT: My regular pdoc thinks I'm a good candidate, as does the pdoc at the university where I'm getting treatment. I have done my due diligence and am comfortable with the treatment. My biggest concern is that I won't respond.

My first treatment was this morning, so I used a car-hire service that I've used before for other medical treatments. I live alone and my friends work, so there's no other way to make it happen. The nurse came out into the waiting area to meet my companion, and went to get her before I could be discharged, so my plan of using Uber or a taxi for the remaining treatments won't work. The car service will be about $350 each time. I'm thankful I can (barely) afford it, but I can't tell you how much it pisses me off that I can't just take a taxi home. Lawyers have ruined medicine!

The treatment itself was pretty standard outpatient hospital stuff - sign forms, get your vitals checked, change into a gown, and talk to the anesthesiologist and pdoc. Also, the nurse placed an i.v. for the anesthesia. Once in the treatment room, they hook up EKG and EEG monitors. The strangest thing that happened was when the pdoc explained the pros and cons of unilateral, bilateral or modified unilateral, and then asked me which one I wanted! Um, whatever you think is best, doc...

I had the modified unilateral, which is a bit more effective than the unilateral, but with less memory issues than the bilateral. I came out from anesthesia quickly and remembered everything that happened before the treatment, and everything after, as well. When I got home, I drove myself to lunch and now am writing this, so maybe once I sleep I will forget everything. But so far, so good. I just hope it works.

Edited by Catnapper
edited for typos

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The one thing I didn't like that I guess I will have to get used to is having a different pdoc do the treatment, instead of the one who did my initial evaluation. I thought I would have the same pdoc throughout, but apparently they rotate so I will potentially have three different doctors performing ECT on me.

In the last year and a half I have had several physical ailments that required hospitalization, and one of the things I found most distressing was the constant changing of personnel. During a nearly one week stay for diverticulitis I never saw any doctor more than once. I've never been inpatient at a psych hospital, so I guess they do the same. 

But my regular pdoc is nice and steady, so that should help keep me calm.

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2 minutes ago, Catnapper said:

The one thing I didn't like that I guess I will have to get used to is having a different pdoc do the treatment, instead of the one who did my initial evaluation. I thought I would have the same pdoc throughout, but apparently they rotate so I will potentially have three different doctors performing ECT on me.

In the last year and a half I have had several physical ailments that required hospitalization, and one of the things I found most distressing was the constant changing of personnel. During a nearly one week stay for diverticulitis I never saw any doctor more than once. I've never been inpatient at a psych hospital, so I guess they do the same. 

But my regular pdoc is nice and steady, so that should help keep me calm.

I had that experience too. The head of ECT did my intake, but had to other docs who would switch, one I didn’t really like 

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Another thing I forgot to mention - I had to fill out a Beck Depression Inventory. I don't know what I scored, but based on doing one just now, I came up with severe depression. I don't like the Beck rating system because I think the questions come off as too melodramatic, so I always feel like I have to annotate my answers.

I like the HAM-D rating system better as I think it's more straightforward, and I did one just now and came up with 30, which translates to "very severe depression". No surprise there...

Hamilton Depression Rating (HAM-D)

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23 minutes ago, Catnapper said:

Another thing I forgot to mention - I had to fill out a Beck Depression Inventory. I don't know what I scored, but based on doing one just now, I came up with severe depression. I don't like the Beck rating system because I think the questions come off as too melodramatic, so I always feel like I have to annotate my answers.

I like the HAM-D rating system better as I think it's more straightforward, and I did one just now and came up with 30, which translates to "very severe depression". No surprise there...

Hamilton Depression Rating (HAM-D)

My program did the Hamilton, but I’m the opposite, I feel like the Beck reflects my symptoms more accurately 

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It's the day after my first treatment, and I have slept, but my memories are all intact from yesterday. I realize the possible memory deficit is cumulative as treatment goes on, so it will be interesting to see where I end up.

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It's the night before my second treatment (on a Monday / Friday schedule), and I just looked at the info I was given after the first treatment. I'm supposed to have washed my hair, but that isn't going to happen. I have really curly, dry hair so hopefully it will be okay. I'm in that lovely phase of depression where I don't bathe very often...  Time for bed.

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Friday, February 7, 2020:

Had my second treatment this morning, basically no change from the first in either procedure or results. I remember both before and after the treatment today, and also my first treatment, so no memory impacts yet. 

My jaw is a little sore today, but nothing a Tylenol can't fix. Also, they let me hold the oxygen mask myself today before I went under. I didn't like the sensation of the anesthesiologist having his hand over my face that I had at the first treatment when they gave me oxygen. They give me oxygen for a minute or two right before they knock me out.

The pdoc said she is happy with the seizure response. She had a resident with her today who was an arrogant jerk, but whatever, we were all young assholes at one point or another. He asked me to pull my hair back during the  middle of the initial interview, and then when we were in the treatment room, he asked me again, and said, "Like I told you to before!" 

The most distressing thing today was that I revealed my first choice suicide plan to the pdoc and the resident, which I have never told anyone before. I have always admitted in the past to having a plan, but I never said what it was. I was laying in bed by this time, and they were hovering over me, and I felt ganged up on and gave in. It makes me furious at them and at myself. But fuck it, you can't un-ring a bell.

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6 hours ago, Catnapper said:

Friday, February 7, 2020:

Had my second treatment this morning, basically no change from the first in either procedure or results. I remember both before and after the treatment today, and also my first treatment, so no memory impacts yet. 

My jaw is a little sore today, but nothing a Tylenol can't fix. Also, they let me hold the oxygen mask myself today before I went under. I didn't like the sensation of the anesthesiologist having his hand over my face that I had at the first treatment when they gave me oxygen. They give me oxygen for a minute or two right before they knock me out.

The pdoc said she is happy with the seizure response. She had a resident with her today who was an arrogant jerk, but whatever, we were all young assholes at one point or another. He asked me to pull my hair back during the  middle of the initial interview, and then when we were in the treatment room, he asked me again, and said, "Like I told you to before!" 

The most distressing thing today was that I revealed my first choice suicide plan to the pdoc and the resident, which I have never told anyone before. I have always admitted in the past to having a plan, but I never said what it was. I was laying in bed by this time, and they were hovering over me, and I felt ganged up on and gave in. It makes me furious at them and at myself. But fuck it, you can't un-ring a bell.

Don’t be mad at yourself, getting ECT puts you in a vulnerable position, which effects how you react and process things, it’s natural and not your fault. Also, it could be said that opening up may be a positive step i treating depression. I have had some asshole resident experiences while inpatient and it fucking sucks. Like what about being a resident gives you license to be the most-self important demeaning figure in the process? Glad you’re doing ok though 

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On 2/7/2020 at 8:29 PM, Iceberg said:

Don’t be mad at yourself, getting ECT puts you in a vulnerable position, which effects how you react and process things, it’s natural and not your fault. Also, it could be said that opening up may be a positive step i treating depression. I have had some asshole resident experiences while inpatient and it fucking sucks. Like what about being a resident gives you license to be the most-self important demeaning figure in the process? Glad you’re doing ok though 

Iceberg, thanks for the kind words, it means a lot to me.

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Monday, February 10, 2020:

Today was my third treatment. The big process change was to raise the head of the bed (from the laying flat position used during the treatment) before the anesthesia wears off. During the first two treatments, I had the terrifying sensation of not being able to breathe for a short time (maybe 20 - 30 seconds?) when the anesthesia wore off.

The paralytic agent that keeps your body still while your brain has a seizure also keeps your diaphragm from working, which is okay since it's for a really short time (under a minute) - your blood oxygen level stays okay, it's just a bad damn sensation to feel. Instead of having me flat on my back when I'm coming out from under the anesthesia, having me in more of a sitting position reduces the sensation, since it's easier to breathe upright. I'm happy to say it worked well. Apparently, I'm a really fast metabolizer of anesthesia so I become fully aware of what's going on almost as soon as they turn off the i.v. The good part about that is that I'm not really groggy so I get dressed and go home shortly afterwards.

I still scored "severely depressed" on the Beck Depression Inventory, so the pdoc said if nothing in my mood or activity level had changed by my next treatment on Friday, she may want to revisit the electrode placement with me, since I haven't had any memory deficits at all (yet...).

The treatment was at about 9:00 am, and I've had lunch and am now just hanging out; it's now 4:00 pm. I could easily take a nap, but I'll probably try and stay awake so I go to bed at a decent time tonight.

My current meds are 300 mg of Lamictal at bedtime, along with Ambien, and then 300 mg of Wellbutrin in the morning. For the first two treatments they had me stop the Lamictal the night before, but for this third one, they had me stop the Ambien, too, which means I didn't sleep at all last night. I asked the pdoc if I could take Ambien before the next time, but she said not to as it does affect the seizure response level. She also told me to take my nighttime Lamictal dose (that I stop the night before) right after my morning ECT treatment so that the cumulative weekly dose stays the same.

And the best thing is that she didn't have that young asshole resident with her today, thank god!  She's starting to grow on me. I see my regular pdoc on Wednesday, who knows me really well, so maybe he'll notice some improvement that I'm not aware of yet.

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Friday, February 14, 2020:

Today was my fourth treatment, and I couldn't be more pleased to say that it's working!  😁. I saw my regular pdoc on Wednesday, and he noticed a definite improvement, and during our hour-long appointment (he does therapy, too), I also noticed I felt better, and was much more animated, and actually laughed without faking it for the first time in a long time.

On Monday, my Beck Depression Inventory score was 41, severely depressed, and today (Friday) it had dropped down to 29, moderately depressed. I haven't had any suicidal ideation all week, which I hadn't even noticed till I did the depression inventory. That's a huge change for me as I've been suffering through that hellscape for what seems like forever.

It's an amazing feeling to have the darkness leaving. I noticed the sunshine today, and enjoyed the way it felt, saw some beautiful violas and started making plans to plant some at my house, and am really hearing music again. I feel like Dorothy in the"Wizard of Oz" when she lands in Oz and her perception goes from black and white to color.

As far as the actual treatment went, it was the same as Monday, which means everything went well, except with a new cast of players. I met the third of the three doctors that do ECT, and I liked him fine. Unfortunately, the asshole resident was back today, but he behaved better than he did when we first met; I guess I'm going to have to get used to him.

The only thing I really don't like is not taking Ambien the night before, since I don't get any sleep, but that's a minor inconvenience for the results I'm seeing. I also hold my bedtime dose of Lamictal, but take it right after the treatment in the a.m. so that my total dose over the week doesn't change, per pdoc instructions.

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30 minutes ago, Catnapper said:

Friday, February 14, 2020:

Today was my fourth treatment, and I couldn't be more pleased to say that it's working!  😁. I saw my regular pdoc on Wednesday, and he noticed a definite improvement, and during our hour-long appointment (he does therapy, too), I also noticed I felt better, and was much more animated, and actually laughed without faking it for the first time in a long time.

On Monday, my Beck Depression Inventory score was 41, severely depressed, and today (Friday) it had dropped down to 29, moderately depressed. I haven't had any suicidal ideation all week, which I hadn't even noticed till I did the depression inventory. That's a huge change for me as I've been suffering through that hellscape for what seems like forever.

It's an amazing feeling to have the darkness leaving. I noticed the sunshine today, and enjoyed the way it felt, saw some beautiful violas and started making plans to plant some at my house, and am really hearing music again. I feel like Dorothy in the"Wizard of Oz" when she lands in Oz and her perception goes from black and white to color.

As far as the actual treatment went, it was the same as Monday, which means everything went well, except with a new cast of players. I met the third of the three doctors that do ECT, and I liked him fine. Unfortunately, the asshole resident was back today, but he behaved better than he did when we first met; I guess I'm going to have to get used to him.

The only thing I really don't like is not taking Ambien the night before, since I don't get any sleep, but that's a minor inconvenience for the results I'm seeing. I also hold my bedtime dose of Lamictal, but take it right after the treatment in the a.m. so that my total dose over the week doesn't change, per pdoc instructions.

Great news!

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Hi, Catnaper!
 

That is wonderful that your treatment is going well!  Please keep us posted  on how you are doing. 
 

 

Edited by kitties

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It's Sunday evening before my fifth treatment tomorrow morning, and I'm feeling really down again. I reread my post from after my fourth treatment last Friday, and it seems almost unbelievable that I felt that good only two days ago.

I did sleep well (for me) on Friday night, and continued to rest on Saturday, and I had a pizza delivered for supper Saturday night. Today I've just binged (also have binge eating disorder) and napped. Showering seems too tall a mountain to climb, even though I desperately need to. I am going to fix myself something hot to eat since getting dressed to go out also seems insurmountable at this point. 

I'm not looking forward to the sleepless night I'm about to have since I can't take Ambien before the treatment. The ECT nurse warned me that there would be some setbacks and not to expect a straight line recovery, and obviously she's right. Maybe I'll feel better tomorrow after the treatment. Everything just seems so exhausting right now...

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Monday, February 17, 2020:

I had my fifth treatment today. As I stated in my earlier post, there was a big slide downward in my mood from how good I felt last Friday to how I felt last night and this morning. I didn't take Ambien last night as directed by the pdoc, so I might have gotten an hour's sleep, and seriously considered calling in sick today, but I forced myself to get up and sort of get dressed and go. My fear of having this treatment fail overcame my inertia.

The treatment this morning was reassuringly the same as the previous ones, and no residents or medical students were there today, which was good since I wasn't in the mood for an audience. Now I know what a zoo animal feels like!

My Beck Depression Inventory score was 34 today, which is "severe depression". Last Friday it was 29, "moderate depression", and a week ago Monday it was 41, "extreme depression", so the needle is moving. The pdoc reassured me that not having a straight-line recovery is to be expected.

I had a late breakfast after the treatment, had some tea at a Starbucks, and came home and took a shower, and even washed my hair, so I guess I got a little bump in mood. I think I will go to bed early tonight and hope tomorrow is better, or at least not worse. The shower took all my energy.

The best news is that I don't have any memory deficits at all, at least not yet.

Edited by Catnapper
Edited for typos

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56 minutes ago, Catnapper said:

Monday, February 17, 2020:

I had my fifth treatment today. As I stated in my earlier post, there was a big slide downward in my mood from how good I felt last Friday to how I felt last night and this morning. I didn't take Ambien last night as directed by the pdoc, so I might have gotten an hour's sleep, and seriously considered calling in sick today, but I forced myself to get up and sort of get dressed and go. My fear of having this treatment fail overcame my inertia.

The treatment this morning was reassuringly the same as the previous ones, and no residents or medical students were there today, which was good since I wasn't in the mood for an audience. Now I know what a zoo animal feels like!

My Beck Depression Inventory score was 34 today, which is "severe depression". Last Friday it was 29, "moderate depression", and a week ago Monday it was 41, "extreme depression", so the needle is moving. The pdoc reassured me that not having a straight-line recovery is to be expected.

I had a late breakfast after the treatment, had some tea at a Starbucks, and came home and took a shower, and even washed my hair, so I guess I got a little bump in mood. I think I will go to bed early tonight and hope tomorrow is better, or at least not worse. The shower took all my energy.

The best news is that I don't have any memory deficits at all, at least not yet.

Just a thought - if the sleep is bothering you that much could u ask them for an alternative med just to get you through? They had me use Thorazine 

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On 2/17/2020 at 7:42 PM, Iceberg said:

Just a thought - if the sleep is bothering you that much could u ask them for an alternative med just to get you through? They had me use Thorazine 

Thanks, that's a good idea! I see my regular pdoc tomorrow so maybe he'll have something up his sleeve.

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I had 12 ECT treatments in December and January and i responded really well. One thing i note to be different between us is that my pdoc took me completely off Valproate and lamictal as she said that i wouldn't have a proper seizure and the ECT wouldn't work. But i was on a high dose of Valproate......1800mg and was on lamictal 275mg, so maybe that was why. I also stopped my benzodiazepine flurazepam the night before. 

Expect some peaks and troughs. I had them. After my 3rd one i felt great but went downhill and uphill a couple of times after that.

All the best! Hope it does the trick for you too 

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