Lived Experience Forum

[Ray_D]

I have bipolar disorder and I almost got to the stage where I had to have ECT when I was depressed recently. I've had so much of a problem with depression that my psychiatrist thinks it's inevitable I'll have it some day. He doesn't seem so sure about using it for bipolar disorder and whether I would need maintenance ECT. Are there any people with bipolar on the forum who have experienced it and how did you find it worked for you? I did a quick search and couldn't find a post this specific. Many thanks in advance.

[Former-Member]

My personal opinion I would not have ECT ever, too many risks involved and plus it affectes your memory. Thats my 2cents worth.

I would try going into hospital first and there are specific programs in different hospitals that may help you. I went to a hospital in Sydney that offered group therapy and its brillant.

I have not experienced it and I know there are other treatments for depression has mentioned above plus all the self care stuff, structure (day to day)

Another treatment that is offered is TMS and it does not have the same side effects and risks has ECT. How old are you?????

[Ray_D]

Thanks for your suggestions @Former-Member. The memory problems do worry me.  However there's a new type of ECT (ultra-brief pulse) that's supposed to have much less problems there.  I've been having individual therapy for 15 years.  TMS isn't available in Canberra where I live.  I'm 44.  I'm feeling OK at the moment so am hoping I won't need ECT.  However, my psychiatrist seems to think it'll be inevitable.  So I was wondering if other people with bipolar had experienced it.  I used to get mainly high moods.  Now there've been lots of lows.

[samt31]

Dear @Ray_D

i don't have bipolar but i had ECT. it didn't really effect me or any memory loss. it was a few years ago now but it made me feel much better.

[Ellu]

Dear Ray_D,

I have bi-polar disorder and have had ECT three times. Each time I was so depressed that there was really not any alternative for me. I had been in hospital for weeks, with not the slightest glimmer of getting better. It was not a decision my psychiatrist took lightly, and he warned me about potential side effects.

After the first three sessions I didn't feel any better, but as things progresed I did start to feel better. I was still depressed, but not as deeply depresed as before. There was no "magic moment" when I suddenly felt better, rather things gradually felt better and at the end of the course I was functioning relatively normally.

Now the downside. I did feel temporary memory loss, and for a while after the ECT my cognitive functioning was affected (I couldn't concentrate to read a book for example). For a few months after being discharged from hospital I would have the occasional memory lapse - I would have forgotten all about a family occasion for example.

Now I would say I am functioning completely normally,

On balance, I was so depressed and suicidal before the ECT, and afterwards having got over some minor side effects I was so grateful that it worked for me. I can't advise you whether or not to have ECT, but I can tell you of my experiences and they may help.

Ellu

[Ray_D]

Thanks @Ellu.

Your experience gave me just the kind of information I wanted to know about.  It's a bit scary to hear about the memory and cognitive problems, but they sound minor compared to the benefits.  My psychiatrist has told me that the memory and cognitive problems can be minimised if I get ECT done on one side of my head (unilateral) and if I get "ultra-brief pulse width".  Do you know if you got either of these types of ECT?  I hope you don't mind me asking.  Many thanks again for the info you've given me.

Ray_D

[Ray_D]

Thanks @samt31 for sharing your experience.  I get the feeling ECT does help a lot of people without the side effects being too bad.

[MeMyselfAndI]

It saved my life, although the road wasn't easy. What I can do is tell you my story but you need to make the decision for yourself.
After battling limited drug choices for 36 years due to drug sensitivity and sided effects I went into an 8 month manic and depressive cycle rapid cycle (both occurring almost simultaneously). The professor who ran the ECT ward at my hospital advised against it saying that "a drug choice" was still my best choice, however due to cognitive impairment on "said drug choice" (a drug I was stable on for 10 years before returning to work as a CEO), I wanted to try ECT.
They started me on single hemisphere (unilateral) ultra brief (half millisecond) pulses 2.5 min seizure three times a week. This worked for about 24 hours and then I would crash. Perhaps it was the mild addiction to anaesthetic that kept me well, but in the end we had to go standard (millisecond pulses).
That progressed well until one day I think they accidentally crossed hemisphere and I lost my memory. Now before you panic and throw ECT into the too hard basket. Your memory does return. You can't push it returning and your friends and family will need to be prepared in case it happens. I found that it started returning within 48 hours but some memories such as people’s faces and events around the time of ECT took 12-16 months to return back to complete.
The reason I mention that friends and family need to be prepared is that me as a person with memory loss. I can’t stress over what I don’t know. (same as dementia) However it was my family who really stressed me by their constant wanting me to remember. I got sick of them starting each sentence with “I know you won’t remember but…. “ or sitting me down with a photo album try to jog my memory. They and you will need to realise that you can’t rush recovery if anything like that happens. Just don’t sweat it, the memory will come back eventually.
Now regarding maintenance. This is all good, especially if unilateral ultra brief ECT is used. However problematic if you do loose memory. That is the reason I aborted ECT and went instead to "the drug choice" and resigned myself to work that I could do happily. Not the CEO role that I had.
Yes, Bi-polar treatment can dictate what work you do, but I wouldn’t change it for the world. I know that I am more “cluey” than most people and I know that I love being who I am. Mania, depression and everything in between.
My advice is to try and talk to others about their experience. I used to have ECT in the same ward as a 91 year old lady that would come in every 3 weeks for her maintenance dose. It suited her to a tea. Alas, this is a decision you need to make for yourself. For me, it saved my life and I don't regret a moment of the journey. Long term it wasn't for me but I will never rule it out for the future.

[Ray_D]

Hi @MeMyselfAndI,

Your reply gave me an amazing and detailed insight into your experience, including the technical details and side effects.  I also have a high-pressure job where I manage other people.  I really admire how you have embraced your bipolar disorder as a part of yourself.  I know that I've learned a lot from my illness too, but it's hard to accept the lows in particular.  It makes me wish I could private message you, but I know this is not that kind of forum.

All the best,

Ray_D

[MeMyselfAndI]

For me, my business acumen is only increased by my Bi-polar so it doesn’t comes a surprise that you are good at managing others. I personally think it gives us a bit of an advantage.   🙂
I learnt early to find someone in HR to work with when it came to scheduling holidays during episodes. I know for me it meat I missed out on a few holidays over my career but I love what I do. If you do decide to go down the ECT road, make sure you have a couple of months flexibility. Just in case that unilateral ultra brief doesn’t work effectively enough. Also look at ECT and drug choices working together, not either/or, like I did.
When I was faced with ECT, I was in an 8 month episode and I had been messing around with drug choices for good year. I was a little naive that ECT would just work and I could continue with work, but my work situation was flexible enough to give me space and my staff were very understanding.
Another down side to ECT was I then suffered anxiety do to the pressure I put on myself to return to work coupled with my families response to my memory loss. It only lasted for the 2-3 months it took for me to re-learn my way around a computer (a little imperative when you work in Tech). The beauty of hindsight. I think if I had not put so much pressure on myself to get back to work instantly, the anxiety would never have happened.
The key is to remain flexible and keep in mind that meditation is great for anxiety caused my pressure to get back to “normal”. One day at a time and just know that I will be jealous. (I have a mild addiction to anaesthetic now and my 10 min “power-naps” that I had during treatment.)
One last thing. You wont realise this because you will already be under anaesthetic but the muscle relaxant they give you before the seizure makes your whole body tense up before it relaxes you. Therefore the first time you have ECT, you will feel like a truck has hit you. If this happens, ask your psychiatrist for what they recommend in over the counter pain relief. Taking something before hand may prevent you feeling like you've hit the gym way too hard while your body is getting used to the aesthetic/muscle relaxant and then seizure.

Your an amazing individual Ray_D. We can change the world with more people like you.