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Greetings,

I have been struggling with my Bipolar II depression for years, and am now going to pursue ECT due to my being medication resistant. I take 250mg/day of Lamictal (an anticonvulsant), 12mg/day of Valium, and an anti-depressant.

I had a consultation with the ECT doctor, and he said that not only will my Lamictal make it difficult for him to induce a proper seizure, which I was already aware of, but that Valium, a benzodiazepine, also prevents seizures. I never knew that, but apparently paramedics use a benzodiazepine nose spray for people having seizures.

So I got hit with two barrels when I was only expecting one: Not only will the Lamictal hinder ECT, but so will my Valium, a benzodiazepine.

I have hyper-withdrawal syndrome, so I can't just drop the Lamictal (which stopped working years ago) and begin ECT. I'm also at a good Valium dose which I don't want to mess with. The doctor will have to increase the electric charge sent to my brain (as relative to someone not on two drugs that prevent convulsions) in order to induce a seizure.

I'm understandably wary of having electricity sent through my brain, but given my particular circumstances, I have nothing left to lose. But as stated above, a larger-than-normal charge of electricity will need to be used. I worry that such a high voltage could have lifelong negative side effects, like chronic migraines for instance. Have studies even been done using such potentially high electric charges in modern ECT therapy and what kind of unknown dangers that could elicit?

Bipolar patients usually have an AC in their med regiment, as well as a benzo of some kind, and I'm sure lots of people with treatment-resistant BP II depression have had ECT. How did they do it? The doctor also said that as treatment continues (Mon, Wed, Fri. for a couple weeks) even a normal person not on seizure-inhibiting drugs has to have the voltage increased with each treatment, as if the brain develops a type of tolerance to the procedures.

For the sake of simplicity, let's say the voltage scale is from 1-10, with 1 being the typical charge sent into an ECT patient's brain who's not taking two drugs that inhibit seizures. As stated above, the doctor told me it's not uncommon to have to increase the voltage for a regular person not on the drugs I'm on as treatment progresses. Well, I'm taking 250mg of Lamictal and 12mg of Valium daily. For me, let's say instead of 1 voltage, it takes 4 for the first procedure. By the time the entire ECT regiment is finished, let's suppose a regular person will have ended up on a voltage charge of 5. For me, with my seizure-inhibiting drugs, let's say I end up at a 10+ voltage charge. That's what I'm afraid of. Relatively (in the modern sense) untested ECT territory and its effects on the brain.

I'm aware of the side effects for ECT for regular people, and I'm not bothered. Like I said, I need help desperately. But in my case, essentially taking TWO anticonvulsants, could my brain be permanently damaged by electric charges that could end up being substantially greater than 95% of people who have this procedure done? Do I need to worry that I'll develop side effects, potentially lifelong? Side effects/damage that would be very rare for someone receiving normal, low-voltage charges? Chronic migraines, ticks, general cognitive defects, noticeable loss in creative ability, writing ability, etc. I'll be receiving high-voltage charges, potentially much higher charges than 95% of people who undergo ECT. And as like normal patients, each treatment should require an ever-increasing charge to induce the seizure.

What should I think about all of this? What should I do?

I'm in an acute depressive state right now, so treatment may begin in just days. Any help is much appreciated.

Thanks! :)

Troop

Edited by troop111

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Haven't done it myself, all I can say is good luck to you.

I've heard the success rate in ECT is quite high!

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Can't u just just hold the am dose of your Valium on ECT days? That's what I did. There are no absolute contraindications to ECT, so you're not going to go to some unheard of shock voltage. It also depends on what country you live in and even what hospital, as there are differences in voltage. It doesn't work on a 1-10 scale...there are many variables including age, meds, severity of symptoms, type of ECT and more. They will stop way before you hit a "10+" range, especially since much higher doses were used in the past. I would say don't worry, these doc's know their stuff, and if this is what you need than you should give it a chance 

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ECT has never been reported for causing brain damage, even going back many years. They now use very low current in comparison. Also, they use bilateral, unilateral or from the front (forgot name) depending on various circumstance. 

I was taken off valium for ECT. I was not on any ACs. It worked extremely well for me.

If I needed to, I'd do it again if necessary. I he bilateral and unilateral alternating treatments. Memory is fuzzy on some things, other things are crystal clear. For the record, I have far worse memory loss from even mild depression, mania and psychosis.

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I call b.s. on no reported brain damage ever. 

I have permanent memory loss and cognitive problems from having ect.  Had to re-learn how to speak properly and forgot about 10 years of my life.  None of those memories have come back, even when told what happened by family back then.  I would say that is brain damage.  I wish I would have never had it done.  I received no benefit from the "therapy."

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And as like normal patients, each treatment should require an ever-increasing charge to induce the seizure.

This isn't correct AFAIK. They generally start on a lower charge to see how you do (our brains are all different - they found mine had one structure on the "wrong" side) and if you tolerate it and haven't had a major improvement (which can happen after 1-2 sessions), only then do they up the charge.  I've had many ECT sessions - this isn't just theoretical protocol I happen to know.

Also, I'd ask the ECT docs exactly how much higher the charge will be for you and exactly how much higher the risks are. The ECT doc told me that there's a parabolic relationship between charge and seizure, meaning that it's not as simple as:
big charge == big seizure & high risks and
small charge == small seizure & low risks.

Ask the ECT doc "would you advise your kid to have this high a charge?". My ECT docs were fantastic and already proffered this info ("yes"). Unfortunately for me ECT had no appreciable effect.

If you're suicidal and have tried everything else - what have you got to lose? Being dead generally has a zero percent chance of helping (joke but not really).

HTH.

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On 7/4/2018 at 2:16 AM, Iceberg said:

Can't u just just hold the am dose of your Valium on ECT days? That's what I did.

No because Valium stays in the body for a very long time and has a lasting anticonvulsive effect in the brain, and therefore needs to be washed out for ECT to have its full effect.

@troop111, in place of a benzo, your pdoc can prescribe an antipsychotic for anxiety which actually decreases the seizure threshold, and if taken during ECT treatment, will actually enhance the seizure induced by ECT. One common thing that is done is low-dose Thorazine is given PRN to patients prior to ECT to reduce anxiety about the procedure, but this also, as I said, enhances seizure induction and therefore the therapeutic efficacy of the seizures. Some possible antipsychotics would be Thorazine, Stelazine, Compazine, Seraquel, Zyprexa, or Saphris. Abilify might be okay, but it has a tendency to actually be stimulating rather than calming; Rexulti might be okay, as it has less intrinsic activity at the D2 receptors and higher affinity at the 5-HT2A receptors; and Vraylar might be okay, as it has about the same intrinsic activity as Rexulti at D2 receptors, but  probably, but it takes forever to start working acutely if you are looking to do ECT in the next few days or weeks.

As for withdrawing from the Lamictal, if it hasn't been working, then as you said, you have nothing to lose by withdrawing from it. Just be sure you come off of it slowly and with your pdoc's supervision. Most commonly, it is withdrawn at the same rate as it is started, but your pdoc may have an alternative withdrawal schedule for you.

Another interesting possibility is to use ketamine as the anesthetic during the ECT. A friend of mine, @ByePolarCoordinates, discussed doing this with her pdoc, and her pdoc agreed because apparently it can have a positive effect on depression and also enhances the ECT process.

Edited by mikl_pls

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Yeah the ketamine thing can be helpful- although I've heard both sides, they wouldn't do it with me because I was young and it can cause people to wake up "rough"...which happened to me with propofol so the ketamine was a definite no. 

@mikl_pls yes I know Valium is long acting but I had no problem with seizure induction/strength when holding it for 24 hours. My ECT doc said its not ideal but they do it occasionally...including on emergent basis when someone with severe symptoms is admitted and needs prompt attention. The mix of lamictal and Valium probably makes it more difficult tho.

as far as the lamictal...I would discuss with your pdoc because ideally you would want to have some stabilizing meds on board at the end of ECT (assuming it helps) to hold things together and possibly lower the need for maintaince treatments. Of course, if you've already tried  a ton of stuff, that's a tough call to make as far as what to stick with vs. risking a change 

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Thanks for all your replies :)

This is definitely "Emergency ECT" as my depression and suicidal ideation are so acute.

@Iceberg my ECT doc brought up Ketamine as a possible anesthesia, and he rattled off about 5 other things they could do, lol. I couldn't follow all of it. He seems to know his stuff really well. But what is waking up "rough"? Using Ketamine as an anesthesia can cause this? Is it rare?

Also "... yes I know Valium is long acting but I had no problem with seizure induction/strength when holding it for 24 hours." - Would you not take your Valium for 24 hours prior to the treatment? Since the procedures are Mon, Wed. and Fri, I'd be worried about going into withdrawal. I was thinking of skipping my Lamictal the night before, or possibly taking the Lamictal and Valium at an earlier time the day prior to treatment to help with the seizure induction process. But then upon reflection, and as you read below you'll see what I mean, I'd be concerned about going into withdrawals if I skipped or even lessened the Lamictal and Valium doses that many days in a week.

I take Lamictal twice a day, and the Valium twice a day. Perhaps on Sunday (and all the off days when I won't be doing the ECT - Tues, Thurs, Sun, etc.) I could take the second doses of those two drugs way earlier in the day, and obviously wait until I got home on ECT days to take that day's drugs as I normally would. So on ECT days I'd take my normal round of meds (after getting home from the procedure of course).

@mikl_pls I don't want to go on an anti-psychotic because I have such a hard time getting off the drug when it stops working. I'm medication-resistant and have ended up in ER from coming off Zyprexa, and I had bad effects from Geodon (again had to go to ER because I lost consciousness) and Abilify (public breakdown, it was weird). I'm like this with every drug it seems. The Withdrawal Project is a group online who have members with the same condition. I just call it Hyper Withdrawal Syndrome. My ECT doc said I'm a 2%er vis-a-vis withdrawals - I'm in that small percentage who get devastated.

https://withdrawal.theinnercompass.org/

The ECT doc's "ECT Coordinator" said that the "right kind of seizure" might not be able to be induced, or something like that, which speaks to what you said "... the therapeutic efficacy of the seizures." I thought that any seizure would be the "right kind" ?

@gb84 that is very disturbing. Can any of you speak to his post?

@sming can you elaborate on what this means from your post: "... there's a parabolic relationship between charge and seizure"?

Also, in terms of my doses of these meds, I take 250mg of Lamictal/day and 12mg of Valium/day. Those are relatively low doses for both drugs aren't they?

I'd rather just do Ketamine infusion therapy, which to my understanding has a similar success rate as ECT, but is much less invasive. But since it's not FDA approved, my insurance won't cover it ... and it's expensive, lol.

I'm having my first session of ECT on Monday, so you guys' continued advice and information would be so much appreciated! :)

Troop

Edited by troop111

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@troop111 1) I liked ketamine way better- but yeah- the bank account took a hit.

waking up rough means getting disoriented and agitated...ranging from a little irritated to going kind of nutty. I don't know how common/rare it is, but when it happened to me the doc had to re-sedate me with benzos so I woke up more gradually. If it happens once they take precautions to prevent it, ex they can give a dose of versed after the seizure. Apparently, according to some docs, this can be more problematic with ketamine. I think the typical one they use is brevital, something to do with it having less anti seizure properties than propofol (which is what they use for kids cuz kids seize more easily). I would go with whatever the doc suggests. It is their specialty after all. As for the Valium- it's really a personal thing...I didn't have any withdrawal. I took it right after treatment and than later that night and than skipped, so mon after treatment, mom pm, skip tues. twice wed, skip thurs, twice fri, twice Saturday,  skip Sunday and repeat. 12 mgs is pretty low but that doesn't mean you won't have issues skipping dose, YMMV obviously. What does the ECT doc say? I'm sure they see this all the time...I mean they can't just turn away everyone on a benzo...the doc must have an idea...you might be able to take a small dose on the tues/thurs if someone thinks that will help...but obviously I'm not the expert 

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11 hours ago, troop111 said:

I don't want to go on an anti-psychotic because I have such a hard time getting off the drug when it stops working. I'm medication-resistant and have ended up in ER from coming off Zyprexa, and I had bad effects from Geodon (again had to go to ER because I lost consciousness) and Abilify (public breakdown, it was weird). I'm like this with every drug it seems. The Withdrawal Project is a group online who have members with the same condition. I just call it Hyper Withdrawal Syndrome. My ECT doc said I'm a 2%er vis-a-vis withdrawals - I'm in that small percentage who get devastated.

Losing consciousness in this case is kind of what would be desired though just before the procedure if you were to take a low, low dose of Thorazine (like 25 mg). This would also only be taken before procedures. If you want, discuss it with your pdoc, but if you really just don't want to take one, you don't have to. You could probably take something else, like Vistaril.

11 hours ago, troop111 said:

The ECT doc's "ECT Coordinator" said that the "right kind of seizure" might not be able to be induced, or something like that, which speaks to what you said "... the therapeutic efficacy of the seizures." I thought that any seizure would be the "right kind" ?

A seizure needs to be generalized (on both hemispheres of the brain) and of adequate length in order to be sufficiently therapeutically efficacious.

11 hours ago, troop111 said:

I'd rather just do Ketamine infusion therapy, which to my understanding has a similar success rate as ECT, but is much less invasive. But since it's not FDA approved, my insurance won't cover it ... and it's expensive, lol.

Ketamine used as the anesthetic agent will be covered by your insurance. It won't be the same as infusions, but it will have some antidepressant-enhancing effect on the ECT. 

14 hours ago, Iceberg said:

@mikl_pls yes I know Valium is long acting but I had no problem with seizure induction/strength when holding it for 24 hours. My ECT doc said its not ideal but they do it occasionally...including on emergent basis when someone with severe symptoms is admitted and needs prompt attention. The mix of lamictal and Valium probably makes it more difficult tho.

Ah, I see! I didn't know that! Very interesting! Thanks for clarifying that!

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@troop111

Not trying to scare you or lead you away from a possible solution to your depression.  But this did happen to me.  I spent a lot of time with a speech therapist after ect since it made me slur my words.  But I also just have a lot of trouble learning new things and retaining that knowledge.  Also, I lost a lot of life memories.  I'm sure some were bad, but some were probably good too.  I just can't see those memories anymore even if I'm told what happened.  I seem to have a pretty good photographic memory otherwise. 

If you decide to go through with ect, I hope it goes great for you.  Honestly I wish I had an alternative to antidepressants as I haven't had much luck with them. 

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On 05/07/2018 at 6:42 PM, troop111 said:

 

@sming can you elaborate on what this means from your post: "... there's a parabolic relationship between charge and seizure"?

Also, in terms of my doses of these meds, I take 250mg of Lamictal/day and 12mg of Valium/day. Those are relatively low doses for both drugs aren't they?

I'd rather just do Ketamine infusion therapy, which to my understanding has a similar success rate as ECT, but is much less invasive. But since it's not FDA approved, my insurance won't cover it ... and it's expensive, lol.

I'm having my first session of ECT on Monday, so you guys' continued advice and information would be so much appreciated! :)

Troop

Hi - not really! I'm no ECT guru. However slides #2 and #3 here 

 describe what he was on about I think. It's also a pretty good intro to the nuts and bolts of ECT IMO.

BTW those are not low doses - typically speaking. They had problems with me taking 1mg of Lorazapam near the ECT session. That could be problematic.

How did it go (assuming it happened)?

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Thanks guys for your thoughtful and very helpful responses! :)

I'm beginning to get freaked out about the memory thing and ECT, after hearing about your story @gb84 and from others who experienced similar things. @Iceberg and @mikl_pls what do you think?

@Iceberg which did you have done first, the Ketamine or the ECT? I'm assuming that one didn't work for you and the other did.

The memory issue is freaking me out because the same thing (10 years wiped out) happened to my Mom's friend's sister-in-law, and a comedian who came through my town said she had 6 months worth of memory loss. Another woman I talked to a while ago in my old pdocs office talked about her long-term memory getting messed up too. I'm scared about that and am wondering if I should just take out a loan and do the Ketamine infusions.

The problem is that when I wean off the Lamictal, like I am now, I become unusually depressed because I'm going through withdrawals ... It's so frustrating that I'm so sensitive to coming off meds while others aren't, lol. That's why the ECT doc said I'm a 2%er. So if I took out a big loan for the Ketamine, then come time for the Lamictal and benzo withdrawals I would imagine any benefits from the Ketamine infusions would be reversed and I'd just be left with a big loan to repay and still miserably depressed.

Any thoughts? Thanks so much you guys are helping me out so much! :)

And btw, I'm having an insurance issue and my first ECT session has been moved to Wednesday. Seriously though, even though I'm in a profoundly acute depressive state, I'm becoming increasingly wary about the memory thing. The more anecdotes I'm hearing and reading from sources I trust the more I'm afraid to do the ECT.

I look forward to your continued help. This is a big life decision for me and your insights and advice are invaluable, as I really have no one else to talk to about this.

:)

Troop

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4 hours ago, troop111 said:

Thanks guys for your thoughtful and very helpful responses! :)

I'm beginning to get freaked out about the memory thing and ECT, after hearing about your story @gb84 and from others who experienced similar things. @Iceberg and @mikl_pls what do you think?

@Iceberg which did you have done first, the Ketamine or the ECT? I'm assuming that one didn't work for you and the other did.

The memory issue is freaking me out because the same thing (10 years wiped out) happened to my Mom's friend's sister-in-law, and a comedian who came through my town said she had 6 months worth of memory loss. Another woman I talked to a while ago in my old pdocs office talked about her long-term memory getting messed up too. I'm scared about that and am wondering if I should just take out a loan and do the Ketamine infusions.

The problem is that when I wean off the Lamictal, like I am now, I become unusually depressed because I'm going through withdrawals ... It's so frustrating that I'm so sensitive to coming off meds while others aren't, lol. That's why the ECT doc said I'm a 2%er. So if I took out a big loan for the Ketamine, then come time for the Lamictal and benzo withdrawals I would imagine any benefits from the Ketamine infusions would be reversed and I'd just be left with a big loan to repay and still miserably depressed.

Any thoughts? Thanks so much you guys are helping me out so much! :)

And btw, I'm having an insurance issue and my first ECT session has been moved to Wednesday. Seriously though, even though I'm in a profoundly acute depressive state, I'm becoming increasingly wary about the memory thing. The more anecdotes I'm hearing and reading from sources I trust the more I'm afraid to do the ECT.

I look forward to your continued help. This is a big life decision for me and your insights and advice are invaluable, as I really have no one else to talk to about this.

:)

Troop

I’ve had it done with great success in the past with very little memory issues. Lasted at least a year, was 6 years ago  

I’m very close to deciding on repeating within the next week or so. 

Good luck and be well. 

Edited by DammitJanet
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@troop111, I have read that acetylcholinesterase inhibitors like donepezil (Aricept) can be used during ECT to prevent possible memory loss that may happen from ECT, if that helps. 

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Actually the ketamine was years after my first ECT treatment. The deciding factor was that I wouldn't have to take a lot of time off school with the ketamine. As far as memory. Unilateral treatment gave me no memory loss, while bilateral gave me moderate loss but only for the time when I was getting treated 

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