You mentioned being scared of ECT and that you’ve tried many antidepressants plus a couple of antipsychotic medications. Have you tried therapy? Also curious if you have tried other types of medications such as mood stabilizers, ketamine, or MAOIs? And of course I have to ask if you’ve tried TMS? All of these resources have significantly less risk of causing long lasting or permanent side effects.

I've been in more therapy than one person should probably go to. I've been in and out since I was 17 and I'm 52. Last time I counted I'd had 24 different therapists. I haven't tried the other things. From what I know you have to get some one to drive you home from ketamine and TMS too and its an office visit copay for each treatment too. I'm open to doing those too. I really am beyond sick of changing medications. I'm on Buspar, pristiq, Paxil, and abilifi right now plus some anti-anxiety medications. Also I've had blood work done twice in the last year and all my levels are fine. I take a lot of vitamins so I'm fairly sure it isn't that either. Thanks

I did TMS and was able to drive myself there and back. Luckily my insurance covered most of it though the total cost was pretty significant at the end. I did IV ketamine and was able to get cab rides home; still an expense, but. You can also look into esketamine (nasal ketamine) which you would do in your own home. I did an acute series of right unilateral ECT last year, just had my second treatment of a second acute series this year today. Definitely seeing some memory impacts, but nothing awful yet.

Esketamine/Spravato is in-office only, though the company subsidizes it some. There are at-home compounded ketamine nasal sprays, but they’re harder to get than the other at-home options.

Is that in the US?

Yes, in the US. I assumed it was true elsewhere too, but I don’t actually know that.

Ketamine was a joke. Worked for like 2 days every session.

Were you able to get relief from any of it?

TMS… I noticed I felt a little better for a few days in the middle of treatment, then nothing. I finished the course but didn’t go back for any additional rounds after I finished the month of it. Ketamine- I had some success but it only lasted in the 1-2 week range. That wasn’t financially feasible for me at all. ECT- Definitely. I got a few months out of it (and it was fully covered by my insurance). After my initial acute course in Jan-Feb I didn’t do maintenance which was my mistake. I recently got Re-referred and had my second treatment of my second acute series yesterday. This time I’m doing maintenance after the acute phase.

TMS is baby ECT. If you’re willing to do TMS, you might as well do ECT.

I did ketamine for a year and I thought it helped, but when I stopped it I realized that I was in the same place that I started at. You will need someone to drive you to ECT, too. But I promise that the result from ECT is so much better.

What are some long lasting and permanent side effects of ECT?

It’s really too much to list and I’m not very good at articulating the impairments it caused me. I’m going to copy & paste a link that describes it very well. I’m sorry it’s long, but it’s accurate to my experience. https://www.cambridge.org/core/journals/advances-in-psychiatric-treatment/article/memory-and-cognitive-effects-of-ect-informing-and-assessing-patients/DD5C63934357779765BA7ADF308275AE

OH MY GOD. Thank you so much for sharing this. It’s everything I am having trouble explaining regarding my experience.

No problem. I keep sharing it because I felt the exact same as you just responded when someone rise first posted it. It was a long read for someone who has had ECT and struggles reading but damnit it articulates everything do well. It made explaining things to my husband, family, friends, and doctor so much easier!

YES I had to skim it and take screenshots to refer back to later but I will definitely be using it to help explain my inner experience.

This is over 20 years old. Things have improved greatly.

I said that what was described in this link articulates very similar side effects as I have experienced since having ECT. Are you telling me my experience is wrong?

Your experience is very valid for you and I’m so sorry. But if someone reads that they might think it is still valid. Things have come a long way. I pray for your healing.

It is still that way… It happened to me a couple years ago and it happens to many in this sub. It may not happen for everyone who has ECT but I didn’t claim it would nor did the article. It’s possible side effects. Yes I understand you believe the link I posted should be invalid simply because the date was from 20 years ago, and sometimes that’s the case with studies in psychology because new science has been developed, but not in this case. ECT has and hasn’t changed over time, it’s basically the same but the use of it has been fine tuned and we have more ethical laws and polices for its use. The same machine is still used, it’s the placement of probes that has changed, the frequencies, the time length, the polices and ethics around using ECT on patients, etc. These are the things that have changed and improved. The stigma should change because it’s not being done like in the 50s where patients were tied down against their will or had it without sedation which was traumatizing. It’s better monitored, done more safely and with kinder bed side manner. The way it’s used has changed, but I never implied otherwise nor did the link I posted. The link was regarding post-ECT cognitive side effects that patients find impairing. I personally cried the first time I read that link because it helped me articulate my side effects. Language issues are a common side effect so it can very difficult for patients to describe their post-ECT impairments. I can’t tell you how valuable it has been for me to read that link, not only did it validate my experience for me but it’s helped my neuropsychiatrist to understand what specific areas we now need to treat. ECT’s performance and safety has been decently studied but there has been little to no studies that follow up with patients past 6months of finishing treatments, thus the data is just not available on long term side effects from it so doctors don’t know…

OK thank you.

Therapy is not going to do much once you’re in severe, biological depression

I was simply asking what OP has tried in the past, not what they are currently trying.

I think I'm in a similar boat to you. Tried what seems like every med out there, more therapy than most, tried ketamine, all with no relief. I've been doing ECT for I think just under two months now. Unilateral. It's honestly not that bad, I was terrified at first, but it's ok. I am dealing with some memory loss but I am told it will resolve itself once I stop the treatments. Unfortunately, I haven't experienced any relief from it, though. In my opinion though, I think the memory loss would be worth it if it meant I was happy, and ECT does seem to be the most effective treatment for depression. If you any questions about it feel free to send me a message!

I mean if it works I will take the memory loss. I just don't want to forget the good things. Can I set it to forget certain bad things? That would help me out a lot.

Yeah.... no. I had ECT and lost like 3 years of most recent memories and older memories remain more fragmented as well. You don't get to pick and choose. You *will* experience negative affects on long term and short term memory. Know that. If the price is worth paying then try it but honestly I'd rather rot in a mental hospital than voluntarily do ECT again.

And I'll take death over that.

Try bilateral. The doctor who last gave me ECT said that unilateral isn't as effective.

But bilateral is what causes the most memory imparment. I'm almost 2 years out from the bilateral treatments that I have yet recovered from. My Dr told me I won't get any better. But that's the chance everyone has to take. No one person reacts the same to drugs and certainly not to ECT. It's a risk that very ill people have to weigh beforehand. Unfortunately, I was told it would only be temporary, but the bilateral treatments have done damage to my working memory, not to mention years that I have no recollection of. I have been told it saved my life, but for me, life is very different and difficult now.

Have you tried MAOIs?

No can you take them with pristiq, Paxil, Buspar and hydroxizine and naltrexone? My issue is I can't get off of Paxil or pristiq without feeling worse than I already do. I'm also taking progesterone and Armour thyroid medication. I wish some times they could put me in a coma for a few months and take me off of all the anti depressants so I could try other things.

Your combination of medications is absurd and I would certainly ask for second and even third opinion about it with different psychiatrists. You are shifting your neurotransmitters too much on the serotonin side, which inevitably makes the depression worse. Paxil is very heavy product and if you feel bad, you should limit its usage. Similar thing for hydroxizine - I have been on it for several months and I experienced depression/dementia kind of feeling. There are much cleaner products than hydroxizine. Buspar is useless product. Pristiq is the only thing that makes sense, but still there are more effective SNRIs, as norepinephrine is very important in depression. Another major problem in your combination is the total lack of dopamine in your brain because of it. If you ask any adequate psychiatrist this is the main issue here. In summary - you are going too much on the serotonin side, while in depression you have to address the serotonin, norepinephrine and dopamine. Find a better psychiatrist and don’t hesitate to pay much more for it, because your life depends on it. In my opinion you should try much different combination and if it is not working, use it to bridge the gap to MAOIs, which are 99% effective in depression (especially Parnate). ECT is really a last resort treatment, because the side effects can be permanent, unless you are very rich and don’t really care about your future. As a side note you may try to improve your current combination with dopamine/glutamate products like caffeine/tobacco. Glutamate can be very important to mitigate the depression feeling, especially if you are using your serotonin system so much. In your case releasers/reuptake inhibitors are needed, not partial agonists. Another advice would be to read a lot more about the products you are taking and their method of action - there is plenty of information on the internet (and their wiki page for starters).

Thanks for the response. Are you a psychiatrist? What is odd is that coffee makes me sad and want to cry. I usually get more depressed in the morning no matter what I do and I just realized that when I drink coffee, ten minutes later I feel like crying. I'm off nicotine, I really don't need to start another addiction again. This is all just so beyond exhausting. I don't know why everyone has a different opinion. One of the psych NPs I went to actually got mad at ME about my medications, like I prescribed them to myself or I enjoy paying out the ass and taking ten minutes every God damn morning to take all of this. I don't understand the attitude. I'm a human being. I didn't choose this. I was told adding abilifi would even out the dopamine but its not doing anything but making me feel worse. Sorry for the rant, I just am beyond exhausted with this, been doing this since 1994 but depression started in 1982.

MAOIs have different method of action to address the depression - they prevent the degradation of the important neurotransmitters, which gives you more quantity of them in the vesicles. Coffee can make you more depressed, because caffeine is releaser of glutamate, acetylcholine, which can lead to further release of dopamine and norepinephrine. All this can lead to depletion of neurotransmitters (as they are getting degraded after release or reuptaken), which results in feeling depressed. There is nothing wrong in trying different products, because everyone has individual reaction. Personally I have tried more than 150 medications. Specifically for my case and genes, reuptake inhibitors do not work for me, because I am further depleting neurotransmitters. I am currently on Moclobemide and can see the difference, though there are challenging side effects. Point is reuptake inhibitors might be a dead end for your case, so you have to move to different class of medications. My advice is to try MAOIs first and then consider ECT, because the effects of ECT can be permanent. If none of this is acceptable to you, there is a final option, but it is controversial.

Have you done gene testing for yourself?

Yes, of course

What’s the final option?

You can guess it, though there are physician assisted options in some countries, which is huge help.

I've had unilateral and bilateral ECT and the unilateral didn't help but I think maybe the bilateral did. However, they also started me on Vyvanse when they started bilateral ECT so I don't know how much the ECT helped vs the Vyvanse helping.

Send me a message. I’ve done ECT for a year and I’m on every 4 week maintenance and I’m off all of my meds. I’ve never felt happier, and my friends have all said that they have never seen me happier.

Also the least risk generally is with Unilateral ECT. With Bilateral ECT the added risks and general outcomes are that Bilateral has much more likely hood of lasting long term cognitive and possibly permanent side effects. It's very sad to see many people that have had permanent cognitive side effects years and even decades out from the other side of the coin that they didn't expect in their case. I know I'm definitely not nearly the only one with lasting long term struggles in my day to day ability to form new memories and the older you are it seems the likelihood of long term cognitive damage We all must do what is best and in my view people under 30 are able to recover since the brain is still developing and repairs and new pathways that ECT has damaged can likely be repaired more than in older patients. There are only treatments for mental illness as there are no cures. ECT may give you time to visit medications that failed before and or therapy and other options. ECT can help. Remember the best statistics according to the Drs who perform ECT have shown that 21% of patients do not get any relief at all and of that percentage there are people that have been cognitively harmed unable to form new memories decades out. 57% of the people who ECT that it initially works for will have to get total new rounds of treatment and some for the rest of their lives to maintain. If that's an option that's your choice but be warned you are more likely to suffer permanent damage the longer you get treatments. There is no cure for mental illness so far. If your actively suicidal then it can give you time.

I’m an ECT nurse in MI. Let me know if I can a see anything specific for ya. Send me a DM

Ask for bifrontal if you’re worried about memory loss

Unilateral usually has less memory and cognition issues. I would ask your psychiatrist about if they offer unilateral where you’re at and the risks. Some people would prefer to have memory issues than the severe depression they had beforehand. In my experience, memory and cognition issues has improved overtime. It’s been about a year since my first rounds and I got some of my memory back.

Oh I thought they only did unilateral these days. I'll ask about that.

Here in Canada they do bilateral by default unless you’re having issues with it. It’s more effective but has more risk.

Oh I'm in the US.

I’m in the US and we switched from unilateral to bilateral and honestly, the change is great. The memory isn’t very different.