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Author Topic: Ketamine Infusions / TMS therapy  (Read 473 times)
maxsterling
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« on: February 22, 2021, 10:20:20 AM »

Today W begins Ketamine infusion therapy, and tomorrow Transcranial Magnetic Stimulation (TMS) therapy.  MY understanding is that these therapies are given to patients with severe depression that does not respond to other therapies, and to those with PTSD.  My W definitely does not respond to medication for depression.  In the time I have known her, she has been on multiple antidepressants at very high doses with almost no success.  She has also seen T for years with no major change in her level of depression or mood.  As for PTSD - she was abused as a child by her mother, and had various other traumatic experiences as a teenager or adult.   But I feel most of Ws mental health issues are very classic and severe BPD.  I do feel the PTSD probably gets in the way of meaningful progress with our r/s and other therapies.  For example, the very quick onset of rage may be PTSD related, and that makes any hope of using any kind of communication tools from my end nearly impossible (for the record, she has nearly raged at her Ts - professionals with years of training)

This thread is to communicate to others what I observe regarding Ws treatment so that it may help others.  Insurance seems to be picking up the TMS therapy, but the ketamine is not covered, and is a bit pricy.    The idea for both is to "rewire" the brain.  Ketamine is supposed to help rebuild healthy neural pathways, and the TMS is supposed to stimulate underactive portions of the brain.  I have read that it does help with BPD, because pwBPD have areas of their brains that are overactive and other areas underactive compared to a non-BPD. 

I kinda view this is a last resort.  I really can't take much more of Ws current behavior without completely falling apart myself.  I don't want the kids to have to deal with it all the time either.  W seems to have anxiety over the procedures, and that brought about another rage directed at me last night again over something I had little to do with. 

The procedure today is about 2 hours.  While she is doing that, I am going to take the kids to do something fun.
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« Reply #1 on: February 22, 2021, 10:36:30 AM »

Thanks for posting this. I have been curious about the use of ketamine. I know it is for severe depression and that it can be effective- but not a permanent change like taking an antibiotic for an infection would cure that. Patients may need to come back for more treatments but I don't think it's meant to be continuous and they are I think eventually changed to a more regular depression medication.

I don't think there's studies on BPD as this is fairly new for serious depression, but I have been curious about how someone with BPD would respond. Thanks for posting about how your wife responds.

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« Reply #2 on: February 22, 2021, 10:53:06 AM »

Thanks for posting this. I have been curious about the use of ketamine. I know it is for severe depression and that it can be effective- but not a permanent change like taking an antibiotic for an infection would cure that. Patients may need to come back for more treatments but I don't think it's meant to be continuous and they are I think eventually changed to a more regular depression medication.

I don't think there's studies on BPD as this is fairly new for serious depression, but I have been curious about how someone with BPD would respond. Thanks for posting about how your wife responds.



That's pretty much what I have read.  Or browsed since I don't have much time to do detailed reading these days.  W's T has experience with this, as does her P.  She has been told this may be something she will need again in a year or so.  The goal is to "right the ship" for right now so that she can actually steer it. 
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« Reply #3 on: February 23, 2021, 08:37:51 AM »

Hi Max, I'm mostly a lurker and have been following your threads.  Nearly 2 years ago my H was hospitalized (voluntarily) after almost non-stop rage episodes, which included both suicidal and homicidal ideations.  I issued an ultimatum, which I now know is useless, but I hadn't found these boards or anything about BPD at that point.  The social worker at the hospital was the one that told me about BPD, and pointed me in the direction of Stop Walking on Eggshells, which got me here.  Anyway, when he was first at the hospital they were seriously considering doing Ketamine infusions and TMS therapy.  After several days when he was in "short term care" (e.g. locked down) they decided that his diagnosis was either BPD or PTSD (they settled on PTSD, which I don't entirely agree with; his rage pre-dated the traumatic incidents that caused the PTSD).  Because of this they cancelled both therapies, saying it was pointless with those diagnoses.  The doctors and hospital were fantastic, so I do trust their opinion, but I was always curious if there would be a placebo effect or something that would have helped.  I will certainly be following along with your reports about your wife. 

I do want to add that I'm so sorry you are in this position.  I've been there (and still am many days), trying to deal with the rage and shelter the kids and supposedly take care of yourself at the same time.  Trying to make life altering decisions for multiple people and feeling frozen - always waiting to see if the "next" med or therapy will help. 
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« Reply #4 on: February 23, 2021, 09:13:45 AM »

Hello maxsterling

You may find this helpful. Parents successful experience of Ketamine.
Ketamine starts Monday
And a five month follow-up mentioned in this thread.
https://bpdfamily.com/message_board/index.php?topic=333923.msg13035843#msg13035843

Excerpt
The goal is to "right the ship" for right now so that she can actually steer it.
Exactly.

WDx
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« Reply #5 on: February 23, 2021, 10:53:01 AM »

Wendydarling -  thank you!!  Those threads will be a helpful resource.

W was dizzy and had a headache after the infusion yesterday.  And last night she could not sleep.  I think she could not sleep because they told her she could not use medical marijuana during treatment.  She normally uses that to knock her out (she is dependent). So she was up, online shopping, and not making much of an attempt to turn off stimulation and go to sleep.   Eventually, she DID break down and use the MM, and fell asleep for a little while.  She said the combination was not good and would not do it again.

She did make a few comments yesterday that I found interesting.  One was that she is desperate to "rewire her neural pathways" - indicating she desperately wants this to work.  Other comments were self awareness regarding her behavior - a desire to stop the cursing, negative self talk, and a recognition that she treated me poorly.  That's not new, she does that on occasion.

She did rage at me last night again after the infusion.  S4 left one of his toys at the park (honest mistake), W blamed me, did not want me to go back to get it, spent an hour raging rather than allowing the 20 minutes it would have taken to go back and retrieve the toy.  This kind of stuff drives me nuts.  She went on and on about how I need to go see a P and get back on ADHD medicine because I am forgetting stuff.  I of course (gladly) invalidated that by saying that I will trust what my last P said in that my issues in that area are from stress and lack of sleep, and that meds won't solve that.  I say I gladly invalidated that because I think W needs to hear that and process it. 

This morning she seems to be a bit more patient and positive.  I wonder how she would be if she actually got sleep.  Today is TMS therapy.  Hopefully that goes okay.
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« Reply #6 on: February 23, 2021, 12:01:22 PM »

Was the MM contradicated by the ketamine, not by the TMS I would assume? I'm certainly interested in following your story on this front and will probably seek out some more resources on the issue myself although it's hoped I'm never in such a situation.

Do they have a prognosis for how long each therapy would likely continue?
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« Reply #7 on: February 23, 2021, 12:34:52 PM »

The P that did the ketamine warned that some patients that use Marijuana while undergoing Ketamine have psychotic breaks and wind up in the hospital.  The other issue is the P not knowing the effectiveness of the ketamine.  I don't think the concern is of the MM making the Ketamine less effective, because there is little research about that.

I think we paid for 8 ketamine infusions, twice per week.   It was mentioned that this is not likely a permanent solution, and if it helps additional treatments may be necessary months/years later. 

The TMS I think is 3 times per week for about 6 weeks.   There are not the same warnings with MM and TMS.

Thinking about this more, I know certain drugs when abused can alter neuro pathways (look at some famous musicians).  I've read stories that conclude the use of Marijuana and other drugs at a young age can hinder healthy brain development and lead to mental health issues later in life.  So it makes sense that using such drugs in a more therapeutic situation could help "rewire" the brain in a healthier way.  My W was experimenting with Marijuana and Hallucinogens as young as 14, and I have sometimes wondered if that was a contributing factor in her mental health issues as an adult.
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« Reply #8 on: February 23, 2021, 01:02:33 PM »


So...if she can say she won't do it again (MM)...why couldn't she not do it in the first place?

(I'm not after you Max....I'm putting the obvious questions out there)

If she really wants it to work...why not follow the doctors orders?


When is the next MC (if I remember right you were going every couple of weeks)?

switching gears

I'm less interested in understanding why she would want to rage for an hour, vice a 20 minute trip to the park...and I'm more interested in your participation in rage...period.

I would think the subject for next MC is "what to do about self soothing". (probably wouldn't call it rage..yet)

Either she leaves you and kids at home and she goes for a walk

Or you take kids and leave her for a period of time.

But...going forward, she may choose to rage (or not)...your choice is to not participate in any way form, shape or faction.

Best,

FF
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« Reply #9 on: February 24, 2021, 10:58:24 AM »

Yesterday was her first day of TMS.  She left with a big headache.  I think the headache was partly a result of not sleeping the night before, stress, and use of the MM.  I am hoping today goes smoother. 

W did tell me this AM this she does feel better.  There have been the same stressors today with the kids as every day, but I can say W got over them much quicker.  It may be placebo affect, but from my observation W is happier today than I have seen her in months. 
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« Reply #10 on: February 24, 2021, 11:13:01 AM »


I am hopeful for you.

I personally have done

https://sadarpsych.com/home-training/baud/

A PhD level psychologist did it "to me".  As they explained it...I figured it couldn't hurt..but didn't expect much because it sounds like a bunch of hokum.

It worked for me!!!!

PTSD "memories" are no longer or much less triggering.

I still had other work to do...but it helped a bunch.

Here is to hoping your wife gets more stable from this!!!

Best,

FF
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« Reply #11 on: February 24, 2021, 01:06:15 PM »

My son has self studied (and experimented with ketamine ) he says did help and “woke him up” like a out of body looking at him moment.   Made him very sad as he realized in the moment how off he has acted and off his thinking is too.  But as positive as it was he feels he couldn’t function and it lasts a day or two Max.  Love to hear more on topic. And how to get the benefits.  What is infusion. ?  He’s terrified of needles which is why he’s said no way.

He did tms for both depression and ocd after ssri, mood stabilizers, Prozac,  did nothing.  I will say his aggression increased.  He felt pain.  Actual pain.  His mood did not improve for it. 

Everyone different of course.  We also did the genomind dna to identify drug to dna comparability
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« Reply #12 on: February 26, 2021, 12:07:49 PM »

Yesterday was Ketamine and TMS, back to back.  First time she has done that.  She didn't complain of the intense headache afterwards, and was generally in an OK mood.  But when we got home, she said she needed to rest.  I played with the kids outside.  Rather than rest, W sat in the room on her phone.  She does not know how to rest. 

S4 was exhausted, and had an hour long tantrum before bed.  W seemed to have more than usual patience with him, but still blamed me for the outburst.  After the kids went to bed, W decided she would go smoke marijuana to help her sleep.  I laid down in bed and fell asleep.  W came back inside and woke me up, then did her whole list of paranoid complaining about stuff from the day, accused me of not caring, etc.  My observation?  Bad reaction with the Marijuana. 

This morning, she was in a very bad mood about everything.  Wondered why the treatment was not working.  I reminded her that she had a long stressful day yesterday and that anyone would feel stressed by that.

Her stress seems to be resulting from meeting with the school psychologist yesterday about the kids.  That kind of thing always causes her to spiral.  Long story short, W has felt for two years that there is something wrong with the kids' development.  We've gotten evals, put them in speech therapy, etc.  The result of every singe eval is that they are perfectly normal, and that they may have anxiety issues.  W want some sort of "diagnosis" to validate the stress she feels.  She isn't getting it from the professionals. 

Yesterday the school P gave her suggestions such as taking the kids to the park every day.  W internalizes this as her being a bad mom, and then spirals down. 

I mention yesterday/this morning because there is no change there from previous behavior.  I can't say any better or worse. 
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« Reply #13 on: February 26, 2021, 03:20:05 PM »


When is your next MC.  Several things just need to be said/dealt with..directly.

Best,

FF
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« Reply #14 on: February 27, 2021, 05:14:49 PM »

Yesterday's sour mood from W could be because she forgot to take her meds in the morning.  she took them, and a few hours calmed down.  But she was in a sour mood the night before, so forgetting the meds was probably only part of it.  Apparently she was pretty down, and later felt bad about the way she acted.  She said she had been feeling almost suicidal.

Today she is much better.  She told the nurse today how she felt yesterday, and they upped her ketamine dose.  They say the depression relief from ketamine should be almost immediate, and she should not be experiencing severe depression symptoms during treatment.  Today has actually been good enough that when I told my W that I was going outside for an hour to work on a personal project, she didn't mind.  Normally this would trigger a sour mood. 

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« Reply #15 on: March 02, 2021, 05:32:21 PM »

The rages have diminished.  The verbal abuse has diminished, but not completely disappeared.  But, there seems to be a recognition on the part of W at how bad she has been.  She seems sad, but it is not the same depression - it's a sadness.  It seems like she is processing things in a new way, and that is bringing up the sadness.  I think she feels things arent working because she still feels sad.  I told her that if she felt euphoric, that would be unnatural and an indication that something was wrong. 

Overall, things seem constructive.  Whether it is the treatment or the nearly daily focusing on herself, I don't know.  During the infusions, she has no choice but to sit still and meditate.

She does complain of headaches, and is having issues sleeping.  But she has stayed away from the Medical Marijuana for almost a week.  She is also recognizing more how busy and stressed I am, and not getting worked up about me doing something for myself. 

Right now I would say that things seem more positive than they have in 5 years.

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« Reply #16 on: March 02, 2021, 05:53:33 PM »


This is good.  Is there a "team" supervising this?  Are they connected to her therapists?

Where does this go?  As in...what do the next few weeks look like?

Best,

FF
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« Reply #17 on: March 02, 2021, 10:22:53 PM »

Her P recommended her for this, and is overseeing it.  Every time she goes in, she has to fill out a questionnaire regarding her symptoms since the previous treatment.  They then adjust the dose and other adjustments.  For example, the night after one treatment she had a bad nightmare.  As a result they did the next one slightly different.  She has two more of the Ketamine, and then the TMS every day for another month or so.  Her T also has experience with this treatment, and has gone through it herself.  After the TMS is done in about a month, it is back to regular T twice a week.  That's the real test. 

I think the nightmare was a positive thing.  It shows that certain areas of her brain that get surpassed with depression and other mental illnesses are activated.  It means she was in a deep sleep, which I don't think she achieves much.  From my end, it feels like I am dealing with a a somewhat functioning person again whom I can have conversations with and not have every word analyzed and misconstrued.  Right now, there is a very noticeable change in the way she is processing things - it seems like a more constructive inward view rather than an outward "blame everyone" view. 
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« Reply #18 on: March 03, 2021, 07:00:59 AM »


Max...this is hopeful and also fascinating to be part of.  Thanks for sharing.

Has your wife ever done a sleep study?

Perhaps I overly focus on that since I have several sleep disorders.  I know in my life that if my 7 day sleep average is around 7 hours per night..that I'm kinda "normal".

If I get less than 6 on 7 day average...I'm an azz.  Get me down around 5...and I don't even like myself.

If I can keep my average above 8 hours...I feel super productive.

Anyway....could be extra data to help guide things and...if better sleep solves/improves even 20% of her issues then that's awesome.

Again...very hopeful for you and your relationship.

Best,

FF
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« Reply #19 on: March 03, 2021, 09:27:34 AM »

Doctors have wanted her to do a sleep study for as long as I have known her.  She never has out of fear.  I listen to her sleep and she very clearly has sleep apnea.  She is being suggested again for a sleep study, and now they are telling her there are ways she can do it at home.  I am hopeful that she will. 

Personally, I have gotten on average 5-6 hours sleep per night for the last 4 years.  Rarely do I get more than 7.  Kids are to blame, as well as having too many things I need to get done in the evenings after the kids go to bed.  It's a big problem, and very much contributes to my inability to deal with this situation.  Hard to not JADE when you are exhausted. 

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« Reply #20 on: March 03, 2021, 01:42:08 PM »


It's entirely likely she will be open to new things towards the end of these treatments.  Might be worth having her P (and rest of her team) try to get her to a sleep study again.

Hmmm....no joke, my first one sucked.  Wires everywhere, I didn't sleep much..but..they got the data they needed and I got my first CPAP.


Took a month or so to get used to CPAP.  Now I would fight you if you tried to take it away.

In my case they were able to figure out about half of my wakeups...which left ptsd/mental stuff as likely cause for the rest.

However..solving half was a massive improvement.

I've had several more sleep studies to tweak and change things over the years. 

The last one was easy peezy even though I still had all the wires and stuff...I was used to it.

Best,

FF
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« Reply #21 on: March 04, 2021, 04:53:08 PM »

2nd to last Ketamine infusion this morning.  W was quite teary and emotional afterwards.  She says they keep upping the dose, which is the normal procedure. 

She did have a little bit of anger as kids were going down for nap and fooling around.  She apologized for it.  She also got upset when I gave her an answer to a question that disagreed with how she felt.  There really wasn't a way to answer the question differently, but it is one of those things where she gets upset because it comes across as me knowing more than her (a control thing).  That kind of stuff drives me nuts as it stifles any kind of constructive conversation about serious topics. 

She was also a bit angry last night after I told her my parents wanted to visit.  I expected that.  But it was not nearly as bad as a typical instance dealing with my parents.   

All in all, she is in a much more positive headspace than I have seen in a few years.
 
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« Reply #22 on: March 04, 2021, 06:24:53 PM »

Sounds encouraging - so glad for you and your kiddos.  Can i ask what post treatments they plan after Ketamine?  Is there a post treatment plan?  or once done your done.  Does Ketamine last in your body or build up..... I'm trying to understand the long term of this all.  Do you go in every few months?

My son did tms and it unfortunately did not work for him. But the treatment plan your wife is under, sounds more intensive then what he was given.  perhaps why his results. 

Take care-and thanks for sharing.   
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« Reply #23 on: March 12, 2021, 10:42:22 AM »

An update here -

Ketamine is over.  TMS therapy is daily for the next few weeks.

W has definitely had some down days/moments this week.  I think she expects to feel drastically better, or euphoric.  It makes me wonder if she truly knows what "content" feels like.  I still see a difference in the way she processes things.  She seems to get over her periods of anger quicker and find more constructive solutions.  She does seem more open to the idea that her past/current problems are problems she caused herself, and not me.  Example:  Yesterday she was talking about her hurting herself by raging on the floor a few weeks ago.  She didn't blame me for driving her to rage.  My name was completely out of the conversation.  She also seems to be more able to have constructive conversations about our r/s and life in general.  Not perfect, but part of that is me having my guard WAY up still.  It will take me awhile before I can feel safe being truly open about things.

Last MC actually went pretty well.  W was open to heating the T talk about things from my perspective.  T seems to be cued in to Ws issues.  Example:  W was talking about how she gets stressed out when I am watching the kids because she thinks I am letting the kids do unsafe things.  My perspective?  I can't watch every little thing the kids do, and the kids need to make mistakes in order to learn.  They are 4, and need to explore what happens when they try different things.  T asked specifically about the unsafe things, W said about the kids not sitting straight in the chair when they eat.  T then reminded W about the worst that could happen - the kid could fall off the chair, get a bump and a bruise, and then the kid would learn.  The kid would not get a broken bone, concussion, or have to go to the ER from falling off a chair.  In that sense, it was good to hear T suggest to W that the worry was HERS and not caused by me, and could not be solved by me.  Just the fact that W was open to that idea is a big change from just a few weeks ago.
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