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Posts
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Hi,
First time post, it’s long. Short version: if the front desk is incompetent, scheduling is incompetent, the ketamine people are weird/incompetent, why should I think the TMS people are competent? Does it matter if the drs seem ok when their whole system is broken and no one cares? These people are zapping my brain. I get that the machine does the treatment, but what if something comes up? How do I trust that they can find their @ss with both hands? But there isn’t anyone else who even does both things. Should I try to transfer treatment to someone who just does TMS?I started TMS on March 05. Today will be treatment #3. I’ve been in the worst depression of my life since I was pregnant almost 4 years ago. I’ve been receiving dr supervised iv ketamine since the summer. The ketamine has helped me out of near constant suicudal thoughts but I have such a bad crash every three weeks that it’s just not a sustainable treatment on its own. I really wanted to find a provider that offered ketamine with TMS so they were familiar with both things.
The process of contacting the only provider who offers both ketamine and tms in my area was beyond awful. It’s a huge group and though I filled out the forms on their website and called and left messages multiple times I never received a call or email back. As far as I can tell their new patient line is never answered by a person. I called for several months but after a friend went to see a psychiatrist there, I decided to just drive over and make an appointment in person, as my friend said the place recommended. Even though the voicemail said “most people can get an appointment in 2-3 weeks, when I asked to make a psychiatrist appointment it was more than two months out. The front desk staff was rude to me that I even came in in person. No one cared at all that I’d been calling for months.
I found out that the TMS office makes their own appointments and has their own system that the psych office can’t see at all- they were even in a different building. So I went to that building and asked to make an appointment. I waited 20 min because the front desk staff didn’t feel comfortable answering questions about TMS so I was waiting for one if the technicians who was getting her own TMS, right then. The front desk staff didn’t tell me any of this, mind you, I overheard it while I waited and they talked like I couldn’t hear them. However, the technician was great. She took the time to take my whole medication and treatment history and all the info she’d need to get the insurace process underway. She spent a good hour with me when I’d just walked in because “we don’t get many people who just walk in, so it must be important” and because “you aren’t the first person who has had these scheduling problems”. I got an appointment for the dr intake/evaluation with the dr directing TMS the next day. He really seemed to know his stuff including all the non western/non medication things I’ve tried- it’s been 20 years, so it’s a lot. We spent 90 min of an hour appointment talking. He also told me that they offer a free ketamine treatment when you’re approved for TMS. I felt good after talking to the dr and they got me approved for TMS within two weeks.
I called the week before I was starting about ketamine because my last dose didn’t seem to have worked. The dr I see said that happens sometimes and I should get in sooner and he would up my dose from 1.1mg/kg to 1.25mg/kg. I figured I could give this info to the ketamine people at this new place where I could get a free treatment. I also asked to see a psychiatrist since I’ve been struggling to find one since September when mine suddenly retired. I was clear that I had not seen a psychatrist there before. They got me in at the end of the week, which I found surprising, but all their stuff says TMS patients get priority appointments, so maybe that was it. It wasn’t. Whoever had made my appointment booked it as a 30 min follow up not a 60-90 min intake with ketamine evaluation. This was a huge problem since I have medications I needed refilled and I’d cancelled my other appointment. I met with the therapist directing the ketamine who I don’t think is a dr, or possibly not a psychatrist. She ALSO said this was not the first time this had happened and that I was not the only person to tell her about leaving messages and never getting called. She went and found a dr and the two of them took extra time to make sure I got my medications refilled and my questions answered about ketamine and TMS. They said that the TMS system is totally separate from the psych system so they couldn’t see the notes from my 90 min appointment with the TMS director or even see my TMS appointments AT ALL. I scheduled ketamine for the first Friday of my TMS, a week after this appointment and I gave her the dose recommendations for ketamine and the contact info for my dr. She said that was more than the usual dose they give, but she didn’t think it would be a problem. She said that she’d let me know ASAP if it was a problem. This was just before lunch on Friday.
Except I got home and my controlled prescriptions were not called into the pharmacy. I didn’t panic because I figured I’d see her got the ketamine treatment or that I could ask when I started TMS Monday. Monday TMS seemed to go well. They said I had a really strong thumb response so finding the right place was easy. But they had forgotten to program the additional PTSD protocol into the machine before it started and running it again would count as a second treatment. (They’re getting a new machine this Friday that doesn’t have that issue. I’m still not sure why no one told me about that to see if I wanted to start four days later on the new machine.) NO ONE at the front desk knew who to ask about my prescriptions, even though the offices are now in the same space. Yesterday’s TMS they again forgot to program the ptsd protocol in.
Then 5pm yesterday I get an email from the ketimine director, that they can’t do my dose of ketamine because they only do one dose for everyone, .5mg/kg, because that’s “medically approved” (Approved by who? I wasn’t aware that it was FDA approved for psych use at all.) I find it really strange that they waited until 5pm the second day of my treatment to tell me this, if this one dose for everyone thing is their policy. I reply to her email including that I never got my prescriptions. She says she’ll “ask the nurse who takes care of prescriptions’. No one knows what anyone else is doing, no one is accountable. I DID finally get my prescriptions last night. I also called and got another ketamine appointment at my regular place on Friday.
I just don’t know how I’m supposed to have any confidence in this place. The drs seem ok, but I don’t ever see them and they don’t care enough that this system is broken to DO anything about it. The only person who even seemed bothered was the TMS director when he found out they had no record that I’d ever even filled out their online form. It really bothers me that a place specifically marketing to the most desperate and most depressed people then doesn’t even bother to reply when those people are trying to get help. I know I’m way more persistent than the average clinically depressed person. They’re getting like $18k from my insurance and I have to pay around $900 in copays. They promised me a free ketamine treatment that they usually change $375 for, then backed out after I’d already started. I can’t get a hold of anyone when I have a question, but getting a hold of someone to pay them is easy. I was too anxious to even notice at my first treatment, but the whole psych office is decorated in TMS ads. The sign on the back of the bathroom door is a tms ad. It just feels weird- like they got the money from my insurance and now don’t have to care about me at all. Like TMS is their money maker and they can just plug me in and get paid. Not that they ever seem to actually care about patients who aren’t right in front of them.
I called my insurance this morning, they said I could transfer to a new provider once that provider got approved, but only the provider can call and find out how long that will be because “it varies”. There’s no one else who does ketamine and tms who’s taking new patients. I did get approved for 36 treatments, so I could stop now, find a new provider and still get my 6 weeks of treatments. I can call people who just do TMS and see if they are comfortable with the ketamine thing and try to get transferred while still doing treatments until the new provider is approved. I don’t know what to do.
I know this whole thing makes me super anxious… am I over reacting? I think I’m going to get the direct number for the TMS director today and call and ask him what the hell is going on and why I should trust them at all. But what could they possibly do to make me comfortable? Do I just cross my fingers and hope nothing unexpected happens, when my whole life has been one weird side effect after the other? I’m terrified because if this doesn’t work, I’m left with ECT as the last thing I haven’t tried. Nothing scares me as much as ECT. I already have huge holes in my memory from PTSD and I know people who’ve lost years for only temporary ECT benefits. I just want to get me back and have a relationship with my daughter that isn’t messed up by my depression and wishing I was dead all the time. Do I just stop TMS for now and focus on my EMDR, which helped me so much before I was pregnant?
My next appointment is in three hours and I don’t know what to do.
Thanks for reading. I know it’s really long.
If you have that many questions about TMS,,,,,,You should run and not walk out of the TMS facility and never return.
A lot of us should instead of wasting money on something that costs a fortune, is fun by incompetent people, machines that oftentimes don’t work correctly. In the long run what the hell is this TMS doing to all of us who have tried it.
I quit, got out, never went back, and I had been through all treatments but the last four.
Why did I finally quit???
I was losing my vision in my right eye where they always put the damn TMS machine on my head!
I had been to my ophthalmologist 2 months prior and everything was fine. Two months later my vision totally changed in only one eye, the side they insisted the machine had to be put on. I quit TMS waited a few weeks and back to the ophthalmologist. Everything with my eye, and vision has returned to normal.
WE JUST NEED TO QUIT THIS CRAZINESS! TMS IS NOT A CURE ALL!
I am now posting then leaving this site as it has too much spam and is not monitored. Obviously the crazy spammers could use a little TMS!Meghini,
I can relate 1000% to all your complaints about the almost WILLFUL administrative incompetence I’ve seen in these operations.
Most profoundly offensive to me is the appalling lack of coordination between members of the same “team”: the inability to share information, like seeing one another’s appointment calendars… really really BASIC friggin office administration stuff you can do for free with Google services. Jesus Christ, the place where I go, the doctors can’t even make, or see, their own appointments! They get an assignment sheet, day to day, or voicemail messages left. You have to do anything through the front desk, but that front desk doesn’t know about the *TMS* shop, so la la la dance and sing and maybe you’ll be able to pull it off, if all the messages get delivered and are checked (I’m sure none of them ever communicate directly via cell phone, even among themselves.) If a doctor needs to reschedule, he calls you and tells YOU to call the front desk and make a new appointment. I wish I were making this up.
Just to drop a cherry on this sundae, there was the time the TMS bathroom was out of order, and they had a sign saying “Out of order, use bathroom in Building One”. But I don’t know what “Building One” is, why would I? And there’s nobody to ask. No staff anywhere in sight. So I wander over to the only other open office I can find, which turns out to be Building One, and there I began a weeklong experience of studying the roughly circular patch of dried blood and/or feces on the floor as it matured. At the end of the week, I finally said to the nice woman in the window that someone really needed to clear the blood or feces on the bathroom floor. She said she’d see right to it.
So!
I find myself asking, OVER and OVER:
If I feel so disrespected by all of this, and if I feel such a profound lack of trust and respect myself for their operation, how can I, with respect for MYSELF, submit to such a deeply invasive level of not-quite-proven medical treatment by this troop of quickly-trained technicians and McDoctors?
The answer, oddly enough, is that yeah, I can, if I put all that shit aside and just focus on the question: once I get it set up right, is this treatment helping me? If I think of it as “assisted self-medication”, where I’m essentially proceeding on my own, on the basis of what I read and what I experience, is that something I want to do?
I mean, if Miracle Drug helps me, and I can only get my prescriptions for Miracle Drug filled at Incompetent Pharmacy, all I really care about is: put the right stuff in the bottle, put the bottle in the little white bag, thank you.
In this case, of course, the “little white bag” is my skull, but small details…
So I wind up continuing with the TMS because the technology looks seriously promising, it isn’t obviously hurting me, and I don’t have to pay for it. Really, this is kind of pitiful, not exactly a ringing personal endorsement here, but for me it comes down to: hey, if it’s free, why the hell not?
Regarding ketamine:
I don’t really have a very convenient way to doing clinical treatments where I live, so I’ve taken it upon myself to literally self-medicate using non-official sources. Any idea I had, though, of home-emulating a standard clinical regiment went out the window pretty fast once I discovered how much I liked it — AND how very much better I felt the next day and the day after that. I am currently doing fairly high recreational doses that I try to keep a least a day or two apart, and plan on continuing at least through the end of TMS in 6 weeks.
I did 5 weeks of TMS and felt subtly transformed, maybe a little intellectually jazzed-up, but not in any clear way less depressed — and then I started messing with ketamine, and that changed.
Needless to say, not a recommendation, and I am running numerous risks. But this is my story, right now, something appears to be helping me. Maybe the ketamine, maybe the ketamine prepping my brain for the TMS in an effective way, no way to tell! Maybe it’s just a talk therapy breakthrough unrelated to any of this! Who the hell knows?
Sorry to ramble, probably unhelpfully, but this is my way of resonating.
I wish you the best, I hope you find what works for you and get good people to help you get it.
By the way, it looks like they just cleaned up a bunch of spam threads. I was going to start one with a subject like “Hello! We are Xsalta, your #1online source for heroin, LSD, and fentanyl!” and see how long it took them to clean up THAT! 🙂
Thank you for the reply.
I was very much in the “I think it could help so I’ll put up with it” camp until things actually got WORSE Friday.
I called to ask to come in 15 min late because my eye exam was running over, but I had to get to ketamine (at the other place) right after. Figuring this out took 3 phone calls, but everything seemed fine. I get to the place and it turns out that they can’t see me because a) they were running an hour late because it was the day for calibrating everyone on the new machine, b)the guy who said it was ok for me to be late didn’t realize he was double booking. (Why is he making appointments at all? Why am I trusting him to aim the thing at my head correctly?) c) They realized I have ketamine AND NO ONE EVER TOLD ME THIS APPOINTMENT WAS AN HOUR LONG. So I had to reschedule for yesterday. Missed treatment Friday all together.
Why did no one call me? I drove 30min to drive another 40 to ketamine. Phones exist. So I tell the nurse, who is the nice one who did my intake, exactly how this lines up with my experience with their awful facility. She is the only person who’s ever said they were sorry in this whole thing. She told me to write a letter and she would personally hand it to the office manager. I was still pissed as hell. Not a great mindset to go into ketamine with.
Then Monday I get to my appointment and they call me 35 min late. I have questions about my weekend of horrible insomnia and changing those meds. The dr, who seemed so upset when he did my 90 min intake, DGAF. I told him that waiting 35 min for an hour long appointment just compounded my worries that the Tms branch didn’t know what they were doing just like every other branch. He got offended. He then said “I guess we haven’t earned your confidence so we’ll have to do that” He seemed to take time to answer my questions about my medications and reactions to TMS.
Then they started calibrating the New Machine (Neurosoft, for reference) . I knew they were getting one but didn’t know it was so soon. Why would you have someone start treatment on a machine you’re getting rid of in 4 days? I said “I didn’t think you were getting it so soon!” He said “YES! It’s Russian! Very bare bones!”
(Don’t you associate “Russian” and “bare bones” with precision neurological medical equipment and confidence?)
I said “oh, so you have more control over the treatments?”
He said “yes! And we don’t have to pay neurostar every time we press a button”Then he started the motor threshold stuff and it HURT. It ended up in a totally different place on my head than the neurostar and it caused the muscles around my temple and eye to spasm hard enough that my teeth slammed together. I’d had problems with the neurostar feeling weird in my eye, which were quickly adjusted. I also have an absurd pain tolerance. This made me cry.
He tried to adjust it and it wasn’t much better. I finally said “ok I think that’s kind of tolerable” and the dr said “good. I wasn’t going to move it much more. And this machine is much less push and play so the tech might not be able to find that tiny spot every time.* *Youll probably just have to tough it out sometimes**. The tech in the room is the guy who couldn’t make my appointment properly. And I just told this dr how I didn’t feel like anyone there cared. But I’m
Supposed to TOUGH IT OUT?But I figured I’d try one treatment On the new machine. If the pain scale is 0-10, 10 being the worst part of my full back tattoo, the old machine was maybe a 3. This new machine was an 8, even with the adjustments. Some of the adjustments were 11. Not like labor or anything, but worse than some injections I’ve had into injured joints (I have a chronic pain joint condition thing) . I couldn’t keep track of my podcast. Afterward the pain didn’t fade. In the bath last night the sweat made that spot on my scalp sting- like a bad sunburn or if you touch your head accidentally when you’re curling your hair. It still feels like a burn.
I got home and called my husband and he called every TMS place within an hour of us. I’m not going back to the Russian burning machine. They can’t do my ketamine and tms, which is why I was putting up with them, I can find someone who at least cares more about patients than cost per button push.
We found two places that aren’t on my insurance, but have been approved by it before that can get me in this week. I have an appointment a week from Friday at a place that’s on my insurace and was recommended by the ketamine place. Except my insurace is saying it will take two weeks to get it approved because it’s the facility that’s approved not me. One of the places that doesn’t take my insurace, the nurse called me from home, gave me her cell number, and said that she knew people at my insurace. We could get it done faster. I have an intake there Thursday am.
None of these places have ever even heard of “Neurosoft” machines.
But I was feeling hopeful. I made phone calls Thursday and my phone anxiety is HUGE. I cleaned things. I don’t know if that was the tms or the hope that it might work… but now I’m super depressed because rather than a possibility of feeling better in 3 weeks I might just be starting over. And at the end of the day, my life is nothing I ever wanted and I have no ability to change it and the people who do won’t even admit they need change. So even with a brand new 100% functional brain granted by the brain chemistry fairy… how much can it help? Nothing has ever helped for very long- and I’m really starting to realize it’s in part because of toxic family I can’t get away from. I feel stupid for getting my hopes up at all. I know how that usually ends for me.
Then today the therapist my husband and I have been seeing says she doesn’t know what to do. Like the last psychiatrist I saw more than once. (It’s nearly a year of trying and failing to find a psychiatrist). I do start EMDR in earnest tomorrow. But I feel like I’ve been asking for help and making appointments and paying drs for this for FOUR YEARS straight. Eventually maybe it’s just that no one can help me and I have to accept that this is my life now.
I’m really worried that I’m this down because I just had ketamine on Friday and it’s not that TMS didn’t work, it’s just a set back. Another in a long line. I shouldn’t feel this bad, yet. But if TMS doesn’t work I think that’s it for me. It’s scary. I’ve done an hour+ of yoga a day for the last three months and I feel this bad. If one more dr asks me if I’ve tried yoga for my depression… 🙄. I mean, I’ve tried EVERYTHING with any sort of evidenced based medicine behind it and even stuff like crystals by my bed because well, it might help. If anyone needs other ideas, there’s genetic testing I recommend, naturopaths do cool stuff testing and supplementing neurotransmitters. I’m really well educated on this. And I’m out of options.
Re ketamine: I’ve also found it very helpful and I know the place I go has people flying in from all over the us and even internationally. When I started this summer it was the only place in my state. Now there are a dozen. I think I’ll stick with the people who’ve been doing it longer, thanks. I met a nice guy who says it’s doing wonders for his MS.
But just like every other med I develop tolerance so fast. I’ve got to find something else. Ketamine is a stop gap. I don’t think there’s anything better for pulling people out of suicideality, but especially for me, the lows and the adaption and the cost… it’s not sustainable.
However, (take this with a grain of salt because it was one of the drs at the idiot place who told me this) but this dr told me that ketamine helps neurogenisis, nerve growth, and it helps people like me who have a genetic thing, being a poor methylatior, that makes it hard to even make neurotransmitters. He also said that ketamine + tms is the most helpful for people like me with complex multiple ptsd. He told me, literally, “you’re the perfect candidate for this. It’s very exiting! We don’t see that very often and it really responds well.”
So I’m not going to judge anyone for finding ketamine if they need it. Just be careful. At the place I go I have a single person sitting with me for the entire 2 hour treatment. Their whole job is to pay attention to the machine that monitors my heart rate and blood pressure and to administer medication if those get too high. I’ve needed that medication more than a few times. It’s no joke. Without the medication at the right time I could have died. I hope you at least have someone else around when you use it.
I hope someone finally gets ketamine approved via the fda for this so people can get help safely, but I don’t think that will happen until some company isolates something from ketamine they can patent so they make money.
Thanks again for your response. I was in a very bad place today when I just thought to check this on the off chance that anyone cared enough to type. It’s really helped me not be in a super scary place anymore.
Meghini,
Yikes — the Russian Burning Machine! (Sorry to hear of such a horrible experience, but I have to give you credit for making up that wonderful name.) Looks like that particular “Neurosoft” device has only been approved by the US FDA for about a year, and is still used mainly in Eastern Europe (I assume for political assassination, where nerve agents are unavailable or prohibitively expensive.) If what I found is the same as what you encountered, it’s being marketed as a “cloud” service (how absurdly trendy and idiotically inappropriate!) with an emphasis on how cheap it is to own and operate:
https://www.caputron.com/transcranial-magnetic-stimulation/324-cloudtms.html
http://neurosoft.com/en/What happened to you sounds just awful. I’m glad you didn’t hesitate to stop the RBM immediately and I do hope you do better with your new provider(s). My experience with Brainsway equipment hasn’t exactly been pleasant, but it’s nothing like THAT — no real pain at all, just a lot of uncomfortable face-twitching and jaw-clenching, creepy as hell at first but totally tolerable at this point (as long as I remember to stuff something in my mouth so my teeth don’t bang together and shatter.)
Re: DIY ketamine, thanks for the concern and warnings, but I’m not really worried about injuring or killing myself with it. From what I understand, even if I somehow managed to take a huge (non-IV) overdose, the worst thing that could happen would be I’d knock myself out then wake up a few minutes later. I’m much more concerned that I might keep on doing this stuff and then not be able to stop, but at this point that feels like a risk I have to take. I should mention that I am not just taking it then enjoying feeling better, I am very deliberately trying to boost my activity levels on the following days, trying to use the ketamine after-effects to help me build new, healthy life routines and find new ways to interact with other people. I am being completely honest with my therapist about what I’m doing, focusing intently on both the potential benefits and the potential risks. And I am still considering going into official clinical ketamine therapy at the end of the TMS treatments, in a few weeks, at which point I would of course cease my own self-medication. So, I do feel reasonably safe, I’m reading a lot, and I’m not doing this in secret isolation, so hopefully if it backfires I can get myself out with no real harm done.
Anyway, I very much hope your upcoming appointments are helpful. And thank you for reading my words. Best wishes…
MH
Meghini,
I think you made the right decision not going back to that clinic. If they can’t book and keep appointments because they don’t have effective front and back office management/coordination, that is a very bad sign. Putting aside the efficacy of the treatment itself, these TMS clinics are businesses and they exist to generate income (by helping people)—but these aren’t charitable businesses. A good, profitable clinic is one that keeps the machines in near constant use. In order to make that happen, they need to keep themselves and their patients on a tight schedule. You shouldn’t be waiting more than 5 or 10 minutes before your TMS coordinator takes you to your treatment room to get you set up. In most cases, the TMS p-doc isn’t going to be the person administering your treatment. Most treatments will be administered by a tech–which is just fine, since these machines (the well known ones) are pretty much plug and play after the initial mapping is done. The doctor should check in with your every few days or so to see how you’re doing and to make adjustments to the protocol as needed.
As for these machines, there are about 5 or 6 that have been approved by the FDA at this point (possibly more). Neurostar has been on the market the longest and is the most widely used. Most of the other machines on the market are essentially copies of the Neurostar (examples are the Magstim, Magventure/Rapid2 etc.). The hardware on these machines may be pretty much the same, but the software and company support are not. The Neurostar is like the iPhone of rTMS machines, with the best company support and the most intuitive software. It comes at a cost though. Each Neurostar machine costs about $100,000.00 to purchase new and providers are subject to a contract that requires them to pay neurostar $100 fee each time the machine is used on a patient (which is a third of what most insurance carriers will pay for each treatment). Because of the steep fees and costs, these are machines become more attractive. The Magstim (made in England) and Rapid2 (made in Denmark) seem to be pretty decent machines in their own right and they have good software, but they are not as polished and intuitive as the Neurostar. I understand they are compatible with neurostar coils, so the patient experience shouldn’t be any more painful and these other machines do have some technical advantages in that they give doctors wider latitude to vary frequencies and pulse rates (which you can do with the neurostar too, but not to the same degree). As a patient that has a choice, I would would go with the neurostar for rTMS since techs are more familiar with them and they are more plug and play.
Neursoft is a company based in Greece, but it’s rTMS machine was designed and is built in Russia. With the most commonly used options, it costs between $45 and 55,000–which is half the cost of the Neurostar and it has no fee based contract. At the same time, customer support is limited and the user interface is clunky. Simple/bare bones is a good way to describe the machine. While it may work, it requires more user skill and judgment to use. If you’re going to rely on tech’s to operate the machine, it’s going to to have the steepest learning curve. I wouldn’t want to be one of the first patients they practice their skill on with this Russian machine.
One other machine worth mentioning is the Brainsway machine, which is a dTMS (deep transcranial magnetic stimulation). dTMS is technically a different treatment from rTMS, but the efficacy is similar. The difference is the dTMS is more effective for some people, the treatments are shorter (20 minutes) and it requires less treatments in total. The Brainsway machine is probably the most expensive one to purchase (~$200,000), but there are lease options. The doctors have less flexibility with the H1 coil that it uses, so it isn’t necessarily better than the Neurostar, but it’s probably comparable. The Brainsway was designed and built in Israel.
In short, if the disorganized clinic that you went to got rid of the neurostar machine and replaced it with the neurosoft, that is definitely not a place I would want to go for treatment. Call me paranoid, but I also don’t want my patient data stored in a cloud controlled by a Russian company on a Russian cloud server. No thanks!!! If they want that info, they’ll just have to hack it from an American company (or at least a company based in a First World Country–like the UK, Denmark and Israel).
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