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Greetings,

I recently had the initial 6 treatments of Ketamine infusions, and that helped my Bipolar II depression (which is treatment-resistant) for about two weeks. Then I had another booster infusion, and that held for a week, then I had another booster infusion, and that lasted a week. These "boosters" shouldn't have to be given more than once every 1-3 months, yet it seems I need one weekly.

So the Ketamine failed to provide prolonged relief.

My only other option now is Electroconvulsive therapy (ECT), which I don't want to do. I know it's gotten better vis-a-vis memory issue side-effects, but I just don't want to do it. I don't like the idea of having my brain electrocuted (however little the electrical charge), and I don't like even the idea of me potentially losing cherished memories.

My question: If I had such a poor experience with the Ketamine, needing weekly boosters, does that bode poorly for ECT therapy? I know ECT also frequently requires "boosters." I don't want to have to go in weekly for an ECT booster. I'm tired.

I've been through the ringer for the past 16 years. I'm just tired of trying to get better. I'm tired and worn down.

Please share your experiences and insights, I'd much appreciate it.

Thanks!

Troop

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Is that all the meds you’ve tried in your sig?

If so, there are so so many more you should give a chance first, in my very humble opinion. 

 

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The ECT doc told me I'm a 2%er, insofar as not only am I medication resistant, but I also follow into that 2% category of having horrendous withdrawals when coming off my meds. I'm stuck.

And anti-psychotics have never worked for me and have landed me in ER twice.

Edited by troop111

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There may be bad news on the ketamine front, by the way - NPR recently did a report on a Stanford University study on ketamine that found that it may act as an opioid and may cause addiction. It's an early study and the findings will need to be replicated, but read it here: https://www.npr.org/sections/health-shots/2018/08/29/642700616/ketamine-a-promising-depression-treatment-seems-to-act-like-an-opioid.

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14 minutes ago, troop111 said:

The ECT doc told me I'm a 2%er, insofar as not only am I medication resistant, but I also follow into that 2% category of having horrendous withdrawals when coming off my meds. I'm stuck.

And anti-psychotics have never worked for me and have landed me in ER twice.

Well, I’m med resistant also, but have had a few work really well for a good amount of time. Trial and error.

I know I’m finally getting some pretty good relief atm from Viibryd and it only took a couple of weeks to start working. 

I’m glad you’re researching first. 

You’ll likely hear a few great things about it, and quite a few bad experiences. 

Ive had it done twice. 

The first time was miraculous. 

The second fucked me up pretty well after only four treatments, and am still struggling with the effects. Just overall decline in cognition, and memory. 

2 minutes ago, Cerberus said:

There may be bad news on the ketamine front, by the way - NPR recently did a report on a Stanford University study on ketamine that found that it may act as an opioid and may cause addiction. It's an early study and the findings will need to be replicated, but read it here: https://www.npr.org/sections/health-shots/2018/08/29/642700616/ketamine-a-promising-depression-treatment-seems-to-act-like-an-opioid.

Oh. Shit that sucks. 

Edited by DammitJanet

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Regarding medication and me, I can't really do trial-and-error. The Lamictal I'm on, for instance, it stopped working 4 years ago, but the withdrawals are such that I can't just pop off it and try something else. The pdoc said people like me are called 2%ers. Otherwise I could try med after med, but I can't. I'm stuck on the Lamictal. The WDs kill me - I went from 600mg/day down to 225mg/day, and I can't go any further. The meds I have been on haven't done anything that lasts, minus my anti-depressant which, thank God, keeps the OCD under control.

I just have a feeling that, although ECT is completely different than how Ketamine infusions work, that based on my experience with the latter (see first post) I will be going in and out for ECT boosters like a rotating door. Especially if I resume cutting the Lamictal ... I'll be getting ECT weekly, lol.

 

 

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My ketamine doc did say she had patients who needed once a week..annoying but less annoying than general anesthesia and cognitive cloudiness of ECT especially if your getting it done with and frequency  

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6 hours ago, Iceberg said:

My ketamine doc did say she had patients who needed once a week..annoying but less annoying than general anesthesia and cognitive cloudiness of ECT especially if your getting it done with and frequency  

thats gotta be so expensive, how would u afford that 

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Well the closest ECT to my house is 2 hours each way so we had to pay for hotel for 2 weeks and food and shit cuz I needed to be there first thing so that wasn't so cheap either. However, you are right...which is I said that it was recommended not that I actually do it 

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9 hours ago, Iceberg said:

Well the closest ECT to my house is 2 hours each way so we had to pay for hotel for 2 weeks and food and shit cuz I needed to be there first thing so that wasn't so cheap either. However, you are right...which is I said that it was recommended not that I actually do it 

thats ashame, especially if it works, im sorry that things are the way they are

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8 hours ago, looking for answers said:

thats ashame, especially if it works, im sorry that things are the way they are

No its ok...eventually I bounced back enough after like 7 treatments (3 a week, then 2, then 1, then 1) that my meds kind of took over and I was able to stop without backsliding 

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3 hours ago, Iceberg said:

No its ok...eventually I bounced back enough after like 7 treatments (3 a week, then 2, then 1, then 1) that my meds kind of took over and I was able to stop without backsliding 

thats great! i assume you are doing well now

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On 9/10/2018 at 6:27 PM, DammitJanet said:

Ive had it done twice. 

The first time was miraculous. 

The second fucked me up pretty well after only four treatments, and am still struggling with the effects. Just overall decline in cognition, and memory.

You did one round of ECT (6 sessions?) and it worked like a miracle, and then you started to slide back into depression and had to do another 6 rounds of ECT but had to stop after four treatments because you got messed up? How long was the interval between the two treatments. You say you're still recovering from its effects - how long ago did this happen? Overall, would you do it all again, both sessions, just because of the benefits you gained from the first session? And with your memory and cognition issues from the ECT, can you please elaborate on that for me? Have you lost chunks of your life/memories?

 

On 9/12/2018 at 3:22 PM, Iceberg said:

No its ok...eventually I bounced back enough after like 7 treatments (3 a week, then 2, then 1, then 1) that my meds kind of took over and I was able to stop without backsliding 

Are all these treatments you had Ketamine or ECT treatments?

You guys are great and helping me SO MUCH!

troop

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1 hour ago, troop111 said:

You did one round of ECT (6 sessions?) and it worked like a miracle, and then you started to slide back into depression and had to do another 6 rounds of ECT but had to stop after four treatments because you got messed up? How long was the interval between the two treatments. You say you're still recovering from its effects - how long ago did this happen? Overall, would you do it all again, both sessions, just because of the benefits you gained from the first session? And with your memory and cognition issues from the ECT, can you please elaborate on that for me? Have you lost chunks of your life/memories?

 

Are all these treatments you had Ketamine or ECT treatments?

You guys are great and helping me SO MUCH!

troop

It was 6 years ago, the first round...8 sessions. Not 6  

Lasted about a year. They should’ve done maintenance ones but nope. 

It was a couple months ago this time. Effects have screwed my cognition, as in reading comprehension was already suffering, now it’s worse. Remembering stuff harder. Have also lost my car key fob costing me 300 to replace. I forget what I was doing within moments at times, and my vocabulary has dwindled. 

I don’t know if I still recommend it at this point. Before this time I definitely would’ve. 

I guess if one cannot pull out of suicidal mode for quite some time and nothing else is working then sure. 

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On September 17, 2018 at 7:08 AM, troop111 said:

You did one round of ECT (6 sessions?) and it worked like a miracle, and then you started to slide back into depression and had to do another 6 rounds of ECT but had to stop after four treatments because you got messed up? How long was the interval between the two treatments. You say you're still recovering from its effects - how long ago did this happen? Overall, would you do it all again, both sessions, just because of the benefits you gained from the first session? And with your memory and cognition issues from the ECT, can you please elaborate on that for me? Have you lost chunks of your life/memories?

 

Are all these treatments you had Ketamine or ECT treatments?

You guys are great and helping me SO MUCH!

troop

Treatments were ketamine. Better for me than ECT 

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On 9/17/2018 at 8:47 AM, DammitJanet said:

It was 6 years ago, the first round...8 sessions. Not 6  

Lasted about a year. They should’ve done maintenance ones but nope. 

It was a couple months ago this time. Effects have screwed my cognition, as in reading comprehension was already suffering, now it’s worse. Remembering stuff harder. Have also lost my car key fob costing me 300 to replace. I forget what I was doing within moments at times, and my vocabulary has dwindled. 

I don’t know if I still recommend it at this point. Before this time I definitely would’ve. 

I guess if one cannot pull out of suicidal mode for quite some time and nothing else is working then sure. 

I'm so sorry to hear that :( Are any of those negative side effects beginning to lift? What kind of ECT did you have done the first time (frontal, from the sides, etc.) and then what kind did you have done the second time? I know there are different ways to do it, so I'm wondering if they used a more outdated method the second time you had it done?

Everyone always says how much ECT has improved over the years, and yet I keep hearing horror stories such as yours and it makes me not want to do it, especially since I'll most likely need a lot of boosters, given how many I've needed with the Ketamine.

 

On 9/18/2018 at 12:17 PM, Iceberg said:

Treatments were ketamine. Better for me than ECT 

So you went through with the Ketamine infusions? Have they worked? Have you needed any boosters? You said they were more effective than ECT? How so? How long ago did you have the ECT done? Did you have ECT boosters? Can you elaborate on your experiences with both? That will give me a better idea of how the two worked on the same person. Sorry for the machine-gun questions, lol :D

I've gone through the initial 6 Ketamine treatments, but I've needed 4 boosters in like 2 months. It seems that a Ketamine infusion gives me about 7-14 days of feeling good (I actually feel like a normal person and want to do things other than sleep), but then I backslide into a deep depression again. The Ketamine doctor is getting a bit wary. Can anyone shed some light on this?

I mean, I am clearly a "Ketamine respondent," but the effects don't last long. Most people don't need a booster for 1-3 months, if that. What should I think of me needing one every 10 days? I could probably get by with two booster infusions a month.

Should I just give up on the Ketamine? I know in theory it's supposed to have a cumulative, restorative effect on the brain (rather than a band aid approach such as using a med), so maybe it will help long-term and it just hasn't come to full fruition yet? But like @Iceberg said, it appears some people just need it weekly, or close to weekly. That some people's brains are just so stubborn that they need it more.

I'm doing better overall since I started with the Ketamine in early July, ... but I still need those boosters every 10 days or so. I have a special medical credit card for the Ketamine.

I'm very afraid of doing ECT. I know things have gotten better as relative to how things were 10 years ago, but still I keep reading and hearing bad things about it. And I have a feeling I'll be needing frequent boosters just like I need with the Ketamine, which I definitely don't want to do with ECT. I'm done with medications (other than the Luvox and Valium - See what I wrote below as to why I'm done with meds), I've tried Ketamine, which works, but only for a short while (unless that cumulative healing thing is legit), and I don't want to do ECT.

Even if I do do the ECT, I have a feeling I'd be getting boosters all the time, given my experience with all the Ketamine boosters I've needed. What do you all think?

In summary, I've been playing this B.S. game for 16 years and nothing is working.

I can't experiment and go on-and-off drugs like most people can ... my brain won't allow it, and I'm so medication resistant that it's like I'm getting punched twice. It's like I get dope sick coming off this crap ... every drug but Zoloft. Like I said earlier, my pdoc says I'm considered a 2%er when it comes to weaning off drugs. All the withdrawals I've had to go through over the years are almost as bad as the mental health issues I have to begin with ... almost. It doesn't matter how slow I taper off, I get devastated and sometimes end up in ER. I'm a rare case when it comes to coming off of meds ... I just can't do it. 

And both the Lamictal and the Valium I'm on will lessen the effects of the ECT if I do have it done. And even if the ECT works, am I supposed to just stay on the Lamictal the rest of my life? Or am I supposed to have bi-weekly ECT boosters? That can't be good.

I know I wrote a lot and I greatly appreciate all you guys' help and your willingness to read all this. I'm floundering here. I feel I'm at a turning-point in my life. I'm not grabbing for attention when I say I'm close to pulling the trigger.

troop

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I will try to answer those questions in a later post...but from what I was told the 14 day effect period is actually pretty typical...the pdoc told me to expect that as a possibility 

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I did 5 initial ketamine IV and then a week booster, and then two or three 2 week boosters, at which point my meds kinda took over- but I'm BP, not sure if you are but that changes things a bit. I did not do any ECT boosters after my two rounds of treatment...the first time due to an increased anxiety level (this is not super common, the docs couldn't agree on the causality of this). The second time was 3 treatments but I stopped as soon as I got minor improvement over fear of those problems reoccurring.The thing to consider is the (relative) convenience of ketamine with lower side effects vs the more established (and sometimes more robust or longer lasting) effect of ECT with its greater logistic and side effect challenges. Also ECT can be cheaper if insurance covers it- but that doesn't include the cost of travel, time off, and possible need to stay over places of the hospital isn't local. Personally I liked ketamine a lot better becuase I could stay in school, had less side effects, and the closest ECT was two plus hours away, which is very tough when the appointments are first thing in the morning. I sometimes had to stay in a hotel

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On 9/25/2018 at 9:56 PM, Iceberg said:

I will try to answer those questions in a later post...but from what I was told the 14 day effect period is actually pretty typical...the pdoc told me to expect that as a possibility 

You're referring to Ketamine infusions right? So your Ketamine doc (kdoc, lol) said that there's only a 14-day window of feeling good after the original infusions or after a booster, and then the depression (or whatever one is being treated for) returns? I assume you trust your kdoc? Since this is such a new, relatively unregulated, and lucrative thing (Ketamine infusions), there are a lot of shyster doctors out there who I'm sure push for infusions whenever they think they can get away with it.

I mean, it's $450 a pop for an infusion. Since I'm assuming this is the same kdoc who told you some of her patients needed weekly infusions, do you trust her enough as a kdoc to believe her, or do you think she's either pushing/allowing these patients to get extra infusions when they may not need them, just to make money? @IcebergThese things I'm asking you Iceberg are of paramount importance to me because I intend to use your anecdotal evidence when I meet with my kdoc this week.

My kdoc says after the initial 6 infusions, his patients are usually good for at least a month, that they kind of coast along feeling good, and then they may begin to "slide back" and will require a booster infusion. He said, as if fact, that someone should only need a booster every 1-3 months, and if someone needs them more frequently (such as my plan of 2 infusions a month) then the Ketamine isn't working as it should.

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Yeah for me they tapered off after 5 not six but same idea. Yeah I trust the Person...the were happy to start adding more distance between treatments when I started feeling Better 

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@Iceberg I'm just not sure what to do. I get like 4-7 good days from a Ketamine IV booster, at 125mg (they say that's a very high dose for my weight - 160lbs). The doc says "We can't just keep running around in circles doing these boosters every week. This isn't a benign procedure. It's as if we're just putting band-aids on the problem without getting any real, lasting results."

And like you, I also have BP, but it's BP II.

He keeps pushing the need for me to get a therapist as if that's the be-all and end-all, and I've been trying, but shit, a therapist isn't going to rewire my brain for me. He's adamant that if the Ketamine booster can nudge me into steady therapy then everything will be okay. I don't think it works that way ... plus I take 225mg of Lamictal/day and 12mg of Valium/day, both of which he says can diminish the effects of the Ketamine and make the treatments less efficacious.

Yeah I need therapy (many do), but how am I supposed to go to therapy if I can't get out of bed. I've been trying, and I've had to miss two therapy appointments so far, one of which charged me $40 for the cancellation. 

Is this kdoc out of touch or what? Is he just going by standard protocol? I don't understand.

After reading @DammitJanet's story with ECT I sure don't want to go that route. My goodness.

What should I do?

troop

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12 minutes ago, troop111 said:

@Iceberg I'm just not sure what to do. I get like 4-7 good days from a Ketamine IV booster, at 125mg (they say that's a very high dose for my weight - 160lbs). The doc says "We can't just keep running around in circles doing these boosters every week. This isn't a benign procedure. It's as if we're just putting band-aids on the problem without getting any real, lasting results."

And like you, I also have BP, but it's BP II.

He keeps pushing the need for me to get a therapist as if that's the be-all and end-all, and I've been trying, but shit, a therapist isn't going to rewire my brain for me. He's adamant that if the Ketamine booster can nudge me into steady therapy then everything will be okay. I don't think it works that way ... plus I take 225mg of Lamictal/day and 12mg of Valium/day, both of which he says can diminish the effects of the Ketamine and make the treatments less efficacious.

Yeah I need therapy (many do), but how am I supposed to go to therapy if I can't get out of bed. I've been trying, and I've had to miss two therapy appointments so far, one of which charged me $40 for the cancellation. 

Is this kdoc out of touch or what? Is he just going by standard protocol? I don't understand.

After reading @DammitJanet's story with ECT I sure don't want to go that route. My goodness.

What should I do?

troop

My experience is not the norm. I believe if my experience was common, they would cease using ECT altogether. However, if all antidepressants have not been tried, and you’re not currently suicidal, I strongly urge you to try another med, especially one of the newer ones. This is just one opinion, I’m sure others will have differing ones. 

I think it should be kept as a very last result. There are soooo many meds...

I hope you can somehow avoid this treatment, but if you are chronically suicidal for awhile now, and have already had an inpatient stay, I’d say sure. 

 

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@DammitJanet you'd say "sure" to what?

My problem is I don't have the luxury of going on and off different drugs because I have such bad withdrawals coming off of them. The ECT doctor I saw called me a "2%er," meaning I fall into that slim margin in drug studies as being someone who can't tolerate coming off the drug.

I could try a new drug, stay on it a month, and if it doesn't work I'm screwed trying to come off it. I've had awful withdrawals from every drug I've ever been on save the Zoloft. It's as if I get dope sick, like I'm coming off heroin or something. I'm currently stuck at my dose of 225mg of Lamictal/day, down from a slow wean-down from 600mg, and I can't go any further. I'm stuck.

And it's not as if my "previous conditions" are simply flaring up because I'm coming off the drug used to treat them, as some doctors have postulated, because the withdrawals I go through have symptoms and feelings I've never experienced before. It's like a scene from the Basketball Diaries, if not worse. And I'm not over-exaggerating. It's BAD. And the reason I'm coming off whatever drug it may be is because it's stopped working (I'm extremely medication-resistant, hence why I'm exploring Ketamine and ECT).

And yes, my titration schedules are by the book in terms of being slow and steady. Slower than most, I make very conservative cuts. And even then I get devastated. It's horrible.

It sucks so bad, but I can't do trial-and-error with medications. Which is why I've given up on them (except for my A/D which helps so much with my OCD). The pain and suffering I've gone through over the past 16 years of going on and off drugs has been, in some ways, almost as bad as my mental illnesses themselves. The withdrawals are excruciating.

troop

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I find it odd they're using a street drug Ketamine now, but I guess if it works and pulls someone out of their depression then it's worth.

I think we all know what the OP is talking about going off and on meds can be pretty horrendous sometimes, it sounds like you've had really bad luck.

But what if you went on one of the drugs and you suddenly felt more like you wanted or yourself?  

It's a gamble no matter what unfortunately.  Going in to try Ketamine was a gamble too, but you did that.

Edited by BrianOCD

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