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My ECT Journey


Geek
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I'm going to post my ECT story here, in addition to my CB blog, with the express intent of this being findable by search engines. 

I already tried deep TMS. That didn't go so well. I am an anomaly and find it exceptionally painful. My experience is highly unusual.

With the support of my tdoc, pdoc and therapy group, I ended up giving my boss 2 weeks notice that I would need 6 weeks off work for medical leave. He was not pleased with the short notice, but said if I need it, I need it. My company is too small for FMLA, so this process was kind of nervewracking. They didn't have to give me the time off or guarantee my job would be here when I get back. They are going to, though.

Turns out work has short term disability insurance with our life insurance policy! That's good news. It was going to be tight to take off 6 weeks.

Work is really hard. I'm not doing well at all. I can't focus or think. I'm getting stuff done but at a snail's pace. My pdoc and tdoc have both asked me if I'm being too hard on myself. I think that's ignoring the point that my cognition has changed and I can tell and it is causing me distress and it's killing my self esteem (what little there is).

My pdoc wants me to go in to the ER on a Monday morning. I'll get admitted IP. They'll do the work ups for ECT and I'll get my first treatment on a Wednesday. I will have no problem getting admitted IP. I just have to tell the truth - I'm chronically suicidal, have a plan, am desperately lonely, and with no ability even to work, feel I have nothing left to live for. Maybe my dog. Maybe. I'm pretty sure that will have them admitting me quickly. Pdoc doesn't seem worried. The plan is to start ECT IP and then shift to OP after a bit. She thinks maybe as soon as next weekend. We'll see. 

I'm feeling a lot of relief just knowing I don't have to go to work on Monday. Maybe I don't need ECT? Maybe I'm actually fine and they won't be able to make me better? Is it really possible to feel better?

So now I have to survive the weekend. Oh, and getting my brain zapped. :/ I need to stop reading ECT horror stories and focus on the good ones. San's blog is calming. 

I'm feeling pretty anxious/scared.

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i have a good ECT story! i had them 3 times: 2 sessions in 2014 and one earlier this year. i averaged 6 zaps per sesh. i did all of them outpatient. where i live you can do that - you just show up an hour and a half before the ECT in the morning, fasting for 12 hrs, they put you under then you wake up and get someone to get you home. headaches, pain in your jaw an eyes, most of it because of the anesthesia as opposed to the ECT itself. goes away after a day. many people have severe memory loss, i've had almost none, all of it's been temporary. i've always had bilateral ECT, never unilateral. it has really, really helped me. it works like a charm for me. it gave me hope that if all else fails, i just go get zapped. i've never tried TMS, supposedly you shouldn't do it if you have bipolar. feel free to PM me if you have questions or whatevs. good luck!

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Good luck with the ECT.  Ignore the "horror stories" -- they're bullshit.  ECT works.  Just be patient with the procedure and with yourself.  It usually takes 8-12 treatments to kick in.

I have treatment-resistant major depression with 3 suicide attempts.  I had given up but ECT worked for me, so I've been getting it for 5 years.  The treatment schedule varies according to how I'm doing.  If I'm in remission, I go in only once every 4-6 weeks for "maintenance therapy".  If I have a relapse, it's more often.  I'm grateful ECT is always there for me.

I wish you all the best and I'm glad you're going too give ECT a chance.

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I feel ECTs saved my life and I am happy it did. I hope it works as well for you. When I first got them my jaw and head hurt after, but I told them and they put something in the meds they give you and it was better. I am so glad that you were able to get time off work.

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I had ECT in 2008 and it changed my life for the better. I was surprisingly not nervous (at the time, I was on Valium, which had to be discontinued because it's an anti-convulsant) and the worst part was waiting. Some people got a PRN in their IV, not sure what med, but I didn't. I could sleep the night before without the valium or any sleep med, and the ECT doc and nurse were fantastic, so were the staff at the hospital for ECT. They'd give me warm blankets, which were soothing. It seems super scary to think about, but the voltage is very low, and I saw someone having ECT (the curtain wasn't shut) and she wasn't moving or anything. I just heard the beep of the machine, and saw the staff around her monitoring her. The duration of the actual shock isn't long. Surprisingly, seeing it reassured me. 

I gave you some links to my experience in your blog, but if you have any questions, just give me a shout. I missed you in chat the other day (sorry) but I'll try to help. I'd do it again in a heartbeat. It was less scary than going to the dentist for a cleaning. I had a headache when I woke up, so they'd give me 2 tylenol and check up on me during the day to make sure it didn't get bad. The tylenol got rid of the headache. It wasn't bad. I was generally active by supper time, I'd sleep most of the day, partly because of the anesthesia, partially because we had to get up at 4:30am for ECT.

I'm glad my blog helped. My one roommate there, who was bed-ridden from depression, finished ECT as I was starting. She was an older woman, around 60, and after a few treatments she wasn't stuck in bed and stopped yelling "Please kill me, let me die", and would go to OT with my other roommate and I and paint beautiful pictures. They let us in the OT (mostly crafts) room whenever we wanted. She told me all about her ECT, and that helped me, too. She was a different person. The transformation was amazing. I also started eating again, and gained to a healthy weight. 

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I am Borg.

But first, some history...

Last Monday I was admitted to the hospital to a unit for psych patients needing more intensive care. It was noisy, there was a lot of yelling and people talking to no one in particular. Tempers flared. Not a comfortable place for me - but it was the unit they had a bed. On Tuesday afternoon my nurse saw how Not Okay I was and took pity on me. A bunch of beds opened up on the other (quiet) unit, but I was the first to get transferred. She said I reminded her of her daughter. I saw her again today, here, in the activity therapy room. She gave me a hug and asked if I was doing better (yes). Props to her.

Wednesday morning my night nurse woke me at 6am to try to place an IV for ECT. He failed because he was unwilling to use a vein in the back of my hand. Then I had to wait, with increasing feelings of impending doom, for 3.5 hours before my name was called to come to the ECT suite.

The nurse who prepped me in ECT, Warren, was really kind. He placed electrodes on my head (to measure brain waves) and chest/ribs (to measure heart rate) and told me stories about his dog. 

When it was my turn, they rolled my bed into the procedure room and it was suddenly surrounded by people on all sides. They set up an IV in my left hand and put the BP cuff on my right arm. They pulled the blanket back, removed my socks, and put a BP cuff around my right ankle. That foot did not get muscle relaxants (because of the cuff), so they could see the physical seizure by the twitching of my toes.

They put a mask over my face with oxygen. They started talking about me - 28 year old female, allergic to flagyl and sulfa, weighs xx kg, etc etc etc. I was crying. I was scared. Warren appeared and held my hand. They started pushing meds into the IV - something for nausea, something for pain, and anesthetic. Warren held my hand until I was out. Once I was completely under they added the muscle relaxants. 

They use a protocol called ultra-brief pulse right unilateral ECT. 

Next thing I knew I was awake... kinda. Couldn't open my eyes and there was this thing on my face that was scary. I tried to remove it a couple times but someone kept telling me (kindly) not to. Eventually I woke up some more and was able to open my eyes and do more than moan. They wheeled me back to the unit, I ate some breakfast, and went back to bed.

Thursday I got a port installed so they don't have to start an IV in my hand 12 times and ruin my veins. I have hardware. I am Borg. 

Friday we did it all again. I was still pretty scared, but at least I knew there would be some friendly faces. Today, Sunday, I talked to my attending psychiatrist. ECT is so scary still I'm in tears thinking of it. Irrationally scared and I know that intellectually, but the fear is there anyway. Last time they connected the alligator clips to the electrode pads on my head before I was asleep. That was scary. All I could think of was jumper cables for a car and that they were going to make a mistake and "jump" me before I was asleep. The attending is going to ask them not to do that until I'm out. He's also going to find out if they can get a low dose benzo for me in the recovery room to help with residual anxiety. I wake up and I'm still all worked up. 

Currently the docs are talking about discharging me on Wednesday after treatment. It can't come soon enough. I won't get to go home, I'll be staying with friends while we finish the index treatment - friends will drive me to the hospital for treatment and be around the house the rest of the day afterwards so I'm not alone.

I miss my dog  I miss my CBers. Take gentle care of yourselves, I'll try to catch up when I get discharged later this week. PM me if you want  

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Thanks for the update! I'm so thankful for the nurse who got you moved, and for the fact that you can stay with friends. The team sounds responsive to your needs and I'm glad. 

It's not fair that it's so hard. You're a lovely person. 

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Thanks for all the support, everyone. 

I was discharged from IP yesterday afternoon. I'm not so sure how I feel about that. Scared. IP is safe and calm, and group living seems to suit me. I'm not good at adulting or being alone.

My friends say I seem "brighter". I guess that means it's working. The ECT pdocs and nurses say that is common - that the patient is the last to know that the treatment is working. I've only had 4 treatments so far, the plan is 10-12 and then a taper. I will continue to receive ECT on an outpatient basis. No substantial memory/cognitive effects that I've noticed. I typically get a 4/10 headache the day of treatment, but 1000mg tylenol seems to take care of it.

Next Tuesday I start IOP in addition to the ECT unless I panic and end up back IP instead, which currently feels like a distinct possibility :/ I'm looking down the mouth of a long weekend alone: my friends already have plans that don't and can't include me even though I'll be staying at their place not mine. This is the part of life I'm not good at.

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Hi Geek,

Thanks for the update, hope you are feeling better. I am currently doing the nerostar TMS, I reached the 120 threshold yesterday -  boy you are right that is painful but I am getting use to it. The Technician that is treating me stated that they had a lady that came to them because the brains wave deep TMS ( which you were having ) was too painful and she had to drop out. She is now getting the nerostar TMS were I am and is doing much better pain wise

GOOD LUCK AND HOPE ALL THE BEST FOR YOU

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I've now had 7 ECT treatments, tomorrow morning I will have number 8. I'm starting to have memory side effects and a lot of bad headaches. 

The current plan is to get treatment number 8 tomorrow, and then next week start a taper down to 2 treatments per week. As it is, these last two treatments have left me feeling really really foggy and confused, and consistently having 7/10 or worse headaches later in the day after a treatment. 1000mg of Tylenol seems to help. 

So far it's hard to tell if I am doing better. I wish I were being asked to do a Beck Depression Inventory or something to more empirically measure my progress. As it is, I don't think I'll know how well this is working until after it's been a while of back to the usual deal. 

 

Sook, thanks for the note about the other patient's experience of Neurostar vs. Brainsway... my regular pdoc had wondered if it was worth trying the Neurostar. It's been a while since I saw her... my care has been being handled by med students at the local hospital where I'm getting ECT treatments.

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I'm home again from the hospital. I was discharged on the 16th, but when I went back for treatment #5 I didn't feel safe at home so I had them readmit me. My friends who I thought were going to be with me while I was OP and help me with ECT ... weren't. Better to be IP in the hospital. 

But I miss my dog and home and stuff. The hospital social worker talked more with my support network here. They agreed to be available to drive and stuff for treatment days. The social worker didn't know how many more treatments I'd get, though she was clear with my friends that I wouldn't get any more than absolutely necessary. It is something I will have to try to remember to ask about when I go for my treatment tomorrow (Monday). This week I will also start IOP on the days I do not have treatments. 

I'm having some substantial memory effects. A lot of tip of the tongue kinds of memory problems. 

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Geek, 

Sorry to hear that you had a little difficulty with your friends commitment to drive you back forth to the hospital. IP is probably better in the long run, I am sure you miss you dog and home. We are all rooting for you to get the results that you are hoping for.

I wish you the best and please keep us updated

Sincerely,

sook

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I hope that your support network becomes more supportive as a result of the conversation with the social worker (or for any reason really).  I also hope that the memory issues subside.  I'm glad you were able to have them admit you when you weren't feeling safe or getting what you needed OP--that takes a lot of strength. 

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