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Posted 1/15/2017 6:00 AM (GMT 0)
After much deep thinking, I will be starting the ECT treatments beginning next Wednesday. I don't really want to undergo shock treatments, but I feel its my last best hope to get this deeply seated double depression under control before I cross over the line.

Treatments will be 3x a week. M-W-F. Hard part is being at the hospital at 6 AM. Hard on my wife, as she has to drive for me on treatment days, get home, hopefully pick up 2-3 hours sleep before going off to her 3-11 (or later) nursing job. I have no one else that can take over that part.

I will not be allowed to drive for 24 hours after each treatment. Been told that I should spend that time just resting and recovering. VA has cleared me for up to 16 treatments, been told to expect 12-15 depending on how well they work.

After months of delay, finally met in person my Pain Manager doctor. She was tough as nails, was a bit afraid of problems, but she took one look at my long list of medical woes and was wonderfully empathetic to my chronic pain needs. We live in an age where its getting harder and harder to get on/stay on the heavy pain drugs - as she said, because of all the fakes and drug abusers out there. That was a huge sigh of relief to me. She read all the notes from my former oncologist and urologist and had no problem with what I am on.

When I go there, once a month, trust me, they count every single pill I have left, and I have to do a drug test - no sweat for me on either front.

I see my "shrink" at the VA Tuesday before the ECT starts, expecting him to up my Lithium, as its no longer working as well, some of the deep agitation is returning.

My PTSD therapist rearranged her schedule so I can continue to see her during my ECT treatments. She has re-labled mine as Complex PTSD.
Posted 1/15/2017 6:05 AM (GMT 0)
Sounds like some progress.

as always,
you're in my thoughts and prayers,
Andrew
Posted 1/15/2017 3:51 PM (GMT 0)
My wife had severe depression and no meds seemed to work. As a last chance she did the ECT's and it was remarkable what happened, we saw a huge difference after 3 treatments, she had a total of 12. This was 12 years ago and no problems since then. Here's wishing you the same luck!
Posted 1/15/2017 4:59 PM (GMT 0)
Thanks for the update, seems like things are moving forward. Great that the PTSD therapist can accommodate her schedule to yours. Keeping my fingers crossed for you!
Posted 1/15/2017 9:11 PM (GMT 0)
Dear Purgatory,

You've got a lot to deal with. On the transportation issue, have you investigated whether the VA might help? You probably know far more about this, but in case you have not seen this before, here is a page with information about VA transportation assistance:

https://www.va.gov/healthbenefits/vtp/beneficiary_travel.asp

FC
Posted 1/16/2017 1:53 AM (GMT 0)
Thanks for taking the time to provide an update. I hope the treatment is successful. Keep us posted.
Posted 1/16/2017 2:31 AM (GMT 0)
It sounds scary David but if anyone has the strength to go the distance and get the positive results you need, I feel sure it is you. sending all our wishes for success and wellbeing, Jaybee.

Post Edited (Jaybee&GG) : 1/20/2017 1:53:42 AM (GMT-7)

Posted 1/16/2017 3:10 AM (GMT 0)
I hope that these treatments will bring you some relief.
Posted 1/16/2017 3:44 AM (GMT 0)
Good luck with the treatments/

If you get a chance, let us know how it goes

Mel
Posted 1/16/2017 4:54 AM (GMT 0)
Prayers that these give you some relief David..
Posted 1/16/2017 8:34 AM (GMT 0)
So glad that you have thought it through and are comfortable with the treatment. Wish you the best David.

An

Post Edited (An38) : 1/16/2017 1:13:57 PM (GMT-7)

Posted 1/16/2017 1:30 PM (GMT 0)
Thanks for the update, David. It sucks that you have to go through all this, but I hope that it actually does give you some relief. You've been through so much. . .
Posted 1/17/2017 1:06 PM (GMT 0)
I was just listening to an interview with Kitty Dukakis and how much it helped her. She felt better after one treatment, but continued to have them. I hope that this treatment helps you.
Posted 1/17/2017 3:26 PM (GMT 0)
David, hopefully this will help you. You deserve a break! I'll be checking in on your progress! Prayers coming your way.
Posted 1/18/2017 6:13 AM (GMT 0)
Call me crazy, perhaps I really am.

I met with my doctor at the VA for an hour, and left feeling really agitated, upset, and uncertain. At 830 this evening, I called the hospital and cancelled the ECT treatments for the 2nd time. I just couldn't get a green light in my head to actually do it. Got to be another path, another way, still striking me as too drastic. And I am terrified of having some kind of long term memory damage. Sure my doctor will be really pissed at me in the morning when he finds out, but I am going by my gut feeling on this one. I have to do what is best for me.

He will probably tell me that the VA will take the offer off the table. I don't like feeling intimidated or obligated to any doctor, I have to feel right. This was not some simple one time procedure. It would last for about a month, plus or minus.

Don't know what will happen next, I feel relieved on one hand, and overwhelmed on the other. I am full of surprises. As of 1 PM today, I was mostly committed to starting in the morning.
Posted 1/18/2017 1:48 PM (GMT 0)
It's a big decision.
Only YOU can make it and it helps to be comfortable with it.

My gut/sense tells me you made the right decision.

Is there some other Forum somewhere where people are dealing with PTSD and/or related issues? Maybe some folks there could offer some suggestions regarding a better path to take.

Mel
Posted 1/18/2017 2:26 PM (GMT 0)
Sorry, David, sounds like a very confusing and upsetting time for you. I certainly understand being petrified of the possibility of memory loss.

I wonder if you looked up statistics about how often severe memory loss occurs in ECT, and compare it with the worse statistics of another procedure, (say heart attack/stroke in knee replacement surgeries), it might help put things in perspective.

I mean, if memory loss is 5%, and heart attack 20%, that would mean something different than if it's the other way around and might help you get really clear and committed to a decision for you.

Best wishes, and don't beat yourself up for being indecisive - it's self-preservation speaking, and I would think it's almost a form of PTSD response to avoid such a treatment!
Posted 1/19/2017 1:04 AM (GMT 0)
Went by the VA today to drop off a letter to the doctor in question about the ECT, he is only there on Tuesday and Thursday. It was a very emotional letter, and hand written, which is hard for me to do (didn't have time to type it). My hand shakes so bad these days (worsened by the Lithium I take), its hard to read. I was suppose to have a follow up appointment in 2 weeks or less. Well, was told it would be at least 5 weeks. That got me even more upset, pretty sure the doctor won't be happy either.

While standing there waiting, my PTSD therapist happen to come to the front and she saw me, my regular Wednesday meeting with her had been cancelled because of the pending ECT treatment. She saw how upset I was, and was gracious enough to see me on the spot. We spent 45 minutes talking about the entire situation. She has a good way of calming me down.

She is going to talk to the other doctor tomorrow, and assured me that he won't be mad at me, and seemed to fully understand how hard this medical decision is to make, and told me to stop beating myself up, and that they can come up with some treatment plan that will work well for me.

I at least left in better shape than when I walked through the doors. Was getting that confused and totally hopeless mind set again, and feeling very on edge and agitated.

Nothing in my journey has been easy, that's just a fact. Wish it didn't always have to be like this.
------------------------
Yes, I had heard about and read about the Dukakis ECT treatment and her new book on the subject. For those that have gotten miracle results - they are huge believers, however, there's a lot of negative out there too. No way to predict an outcome.
Posted 1/19/2017 1:24 AM (GMT 0)
Take care and hang in there, David
Posted 1/19/2017 4:05 AM (GMT 0)
David:

Could it be the Lithium is causing more issues than it is helping with?
The list of SE is a mile long.

Mel
Posted 1/19/2017 4:31 AM (GMT 0)
If this indecision is unusual for you, perhaps it is your PTSD or perhaps you medication which is making it even harder than it normally would to make this decision.

Saying that, ECT has a long history (many of have seen One Flew over the Cuckoos nest), and even though modern ECT is very different and much safer there is still a level of risk associated with it. I can completely understand your ambilvance about this treatment - on the one hand today's ECT has helped a lot of people in a dramatic and positive way, but then there are the side effects.

So your decision did not particularly surprise me. It is your body David and you are allowed to change your mind even the second time around. Don't be hard on yourself.

An
Posted 1/19/2017 6:17 AM (GMT 0)
Every doctor I have talked to about ECT has said the same thing, that one scene in "One Flew Over.." has tainted the public's view of ECT for decades. In the movie, it was done for punitive reasons, not for medical reasons. And how its performed today isn't remotely like in the movie. You are put fully under for starters, and then they inject a strong muscle relaxers so that your body isn't convulsing like in the movie. There is no strapping the patient down. The only thing that wiggles a bit are your toes, that's how they tell that it's working. The zap is generally 4-6 seconds, and is usually limited to 20 volts. Not sure of the amperage.

Went to the Dukakis page on-line, and its very well put together, with testimonies of patients that have underwent it, and a good FAQ explaining things. Think it was called "ECT - Light at the end of the Tunnel", or something similar.

I will wait for my doctor to contact me, hopefully tomorrow, and see if we can re-group. My therapist said another possibility is for me to be in-patient and have the treatments done that way, she thinks it would be better. But it would mean being in the hospital about 4 weeks or so.

On the Lithium, only been on it 1 1/2 months, and as long as you are getting your levels checked regularly, its been deemed safe for very long term use. It's been around a long time, there are people that have been on it steady for nearly 30 years.

It's mostly used for bi-polar, but its been proven to help with deep depression and suicidal thoughts. With me, only side effect has been excessive hand shaking, I had a hard time eating soup today at a restaurant, couldn't hardly keep any on the spoon, and its becoming difficult to write anything by hand.

On the positive side, it makes me feel more balanced, and keeps my agitation and anger at bay (not that I ever show much anger). My wife has noticed a big difference since I have been on it.

It's all a balancing act, with the chemicals in one's brain. No two people react the same way. I was tried on 4 different types of anti-depressants, and none of them worked for me.
Posted 1/19/2017 9:22 AM (GMT 0)
David, just lying here in the middle of the night reading again where you are. Seems like your road never leads to a desired destination. Your doctors appear to be continuing to seek answers and not giving up. I am sorry that there is no simple fix for all of this. It is an ever changing target to hit. On a different note, several years ago you were the half time guest at college football game. Was that a Clemson game? They certainly looked good last week!
Praying for you right now and your wife.
Posted 1/19/2017 11:00 AM (GMT 0)
David, I am happy you ran into the PTSD therapist and that she calmed you. Over the years, you've had to make so many decisions about your body. I know QUALITY of life has been so important. Yes, you have a right to change your mind. Issues of pain and depression are not easily made. I have always hoped things WILL improve! Take care, my friend!

(Octorobo, how kind to include David's wife in your prayers. This cannot be easy for her. Ron is in pain 24/7.
From day to day, he never knows what his pain level will be. Mostly, I wish I could help him. Prayers for all experiencing unbearable pain!)
Posted 1/19/2017 5:51 PM (GMT 0)
Hi David:

I haven't been on this site for a long time, but wanted to check in and see how things were going. I am sorry to read of your severe depression. You must do whatever is best for you - I fully support that. I did want to say that I used to work in a psych hospital and I watched ECT once. It was very non-eventful. The patient was completely under anesthesia. They put a tourniquet like thing on her arm, that is the only part of her body that had a "seizure" like activity. It basically looked like a dog having a dream of running in it's sleep. It was so mild, the nurse in the room, held the patient's hands through the "shock" and timed it. I guess the longer the "shock" the better the result. I saw the patient later that day, she had been sleeping off the anesthesia, but had woken up and was smiling. I pray that things go well for you - whichever decision you make.
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