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Damn spam…
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
Eric,
I decided not to ask, having realized that I have a serious “portion control” problem with this stuff, and could not in good faith assure my doc that I would adhere to his (or really ANY) prescribed regimen.
So, I continue to self-medicate, with full awareness that those are rocky shores I’m sailing around, acquiring small amounts at one time to enforce limits as I go. I do this because it is hugely enjoyable, has no crash, has no hangover, in general has no deleterious effects that I can tell… AND, above all, leaves me feeling, in the days and nights that follow, a kind of illuminated clarity of thought and emotion I haven’t felt for quite some time. It just feels a whole lot healthier.
Of course, I’m still doing the TMS, so who knows how the two are interacting. But TMS did not help me in anything remotely like the dramatic way ketamine has — so far.
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This reply was modified 6 years, 1 month ago by
Martin Helios.
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! 🙂
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.
Wow. That never occurred to me. A prescription for compounded ketamine nasal spray. That is a great idea, thank you!
Doctor X and I did briefly discuss the up-and-coming esketamine spray, with the shrug that it isn’t yet approved for any use, on- or off-label, and I assumed asking him to prescribe a bottle of injectable K would have been out of the question (and he certainly didn’t offer.) This was in the context of me maybe going to a clinic; I had not then broached the possibility of self-medication.
But this feels much more “askable”. I can call Pavilion first and find out exactly what a prescription should look like, maybe even download a form, then take that information to my doc and see if he’ll go for it. I would hope he would, especially if I’m determined to do this and cooperating will keep me from ingesting impure pharmaceuticals.
Hey, maybe he can call this a pioneering treatment modality and get his photo in the next Brainsway brochure deployed to counseling center waiting rooms worldwide.
Let me ask, do have have any personal experience with this particular place?
I’m just going to respond to this stuff since I frankly can’t keep up with you, no offense…
> DIY Ketamine Treaments??? Really???
Yes indeedy.
It isn’t the cost; I’d gladly pay a lot more for medical infusions of pharmaceutically pure K.
My problem is getting home after a session without a “responsible adult” to pick me up.
One clinic would not allow me to elect a post-treatment cab ride to a local motel, which had me thinking “fuck this” and ready to give up on that scene entirely. I mean, I have no family, I have no friends, I have no-one to drive me. They forbid me to hire a driver, so, I get shown the door. Which feel very ugly and vaguely Puritanical, as if anyone who has to PAY for someone to drive them can’t be a very nice person, now, can they?
However, clinic #2 was more reasonable and would indeed let me do the local cab/motel thing. So I thought thought thought real hard about it but decided, not now, not while still doing TMS 2x weekly, 1.5 hours each way; I’d have to find someone to care for my dog up here then drive down another 1.5 hours in a different direction for K infusion, cab it back and forth to a motel, then return home the next day.
So, maybe later for that, but not now. Which left my old friend the Dark Web.
Dangerous? Obviously. Can’t deny that. But really, much less so than black market opioids, which are more likely than not cut with fentanyl these days. And one can buy reagent test kits that are simple and accurate enough. I relied on customer reviews and a certain simple home test. But even with whatever lack of certainty, my continued existence during the TMS regimen was a dark, risky enough affair that I had no problem taking this risk to maybe climb out of that hole long enough to get through the TMS and then possibly continue on into clinical ketamine therapy in the future.
I’m not worried about the law. That would be an amusing case. First-time offender in his 60s self-medicates with controlled substance because he has no loved one to drive him to a licensed clinic. Lock him up.
Regarding dosage: I did mention insufflation (snorting), and I don’t know if 100mg via that route is anywhere near as effective as that same amount directly into the bloodstream; I assume not. I was careful, a bit now then a bit more 15 minutes later ’til I had a good idea what was happening.
I admit I quickly gave up on the idea of trying to replicate the clinic experience, going more by my sense of where this was taking me. If that puts me in the more “recreational” zone — and I suppose it does — I have to ask, OK, so? Does anyone really know if that is a bad thing, for me in particular, if I enjoy it, it helps, and I’m careful? I do have a supply of clonazepam at hand to keep any badness from spiralling out of control, but subjectively, the experience has been just about the safest “tripping” type drug I’ve ever taken — last night, the feeling was overwhelming one of peacefulness and rightness, about it being just so OK to stay and be where I was, where I had arranged to safely be. I lounged on a bed and listened to Enya singing Christmas carols under soft lighting for a few hours, tripping on ketamine, then went to sleep… and today found me feeling clear-headed, brightly-mooded, and more capable of activity than I’ve felt in months.
Later this week, another magnetic shot to the cranium.
Sweet mystery of life…
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This reply was modified 6 years, 1 month ago by
Eric,
First of all, thanks.
Second of all, I do not know how your wife managed to sustain any hope of successful medical treatment after so many bad experiences. May that hope not be misplaced, and may the current course be helpful for her. Good luck. Best wishes. Really.
Third of all, me. This. TMS, ketamine, hope, fear, hope, fear, hope.
Part of my cynicism about TMS comes from the fact that the shop where I’m being treated feels like an uncoordinated amateur-hour operation. The doctor attended the initial calibration and then, as far as I can tell, dropped out of the picture, leaving the treatments to the technician. I could go on and on with all my complaints about this place, but let me just say that I got a very bad feeling, right off the bad, when I was asked to signed an informed consent form that was a lopsided Nth-generation photocopy where some of the text was actually cut off. This might sound petty, but Jesus Christ — we’re talking electronic brain surgery here, and I’m being asked to sign a consent form that isn’t even all there? (I pointed out that they were setting themselves up for a lawsuit where a court would not look favorably on a signed “waiver” that was semi-illegible and had several lines completely missing. It was corrected before I signed.)
Be that as it may, I don’t really see the doc and the tech as having much to do with my treatment, at this point. I feel like this is almost a form of self-treatment, since I’m right now being guided by what I’m reading and what I’m feeling and really not expecting much at all from them. They’re custodians of this fancy equipment, and I’m paying them to operate it for me.
As far as how to tell if it’s working, I completely agree that objective things like changes in behavior are usually more significant than subjective feelings. Rather than just evaluate my “mope index”, I constantly monitor myself for small signs of progress like singing to myself, or having small positive, energized interactions with other people. Unfortunately, what I believe I’ve noticed in terms of TMS effects is mostly just a kind of energized thinking, which, however, translates neither into improved mood nor improved behavior. And now I’m past the initial “burst” of treatments and into the extended twice-a-week phase.
So, I don’t think it’s working for me. And that is not “the depression talking”, that is me as educated consumer evaluating a medical product that just doesn’t appear to be delivering. But, since I’ve come this far and I’m not paying for it, merrily we shall roll along to the last session, even if it’s ultimately as effective as wearing copper-infused socks.
So, ketamine.
As I mentioned, trying to pull off both treatments simultaneously is just beyond what I can manage, logically, so I’ve put off consideration of ketamine infusion until I’m done with the TMS. I may well pursue it at that time.
Meanwhile, I took the extrajudicial route and have just completed a “course” of self-medication with black market ketamine. Please, spare me the warnings, I know, I know. But I believe what I got my hands on is reasonably pure, and what I did with it was done carefully and with a great deal of consideration.
I’d normally worry that what I’m disclosing now might get me banned from the forum, but considering the amount of “dissertation writing services” being advertised, I don’t think I have to worry about that.
I acquired a small quantity of ketamine which I’ve taken in several sessions, insufflated doses starting at 100mg and going up to 200mg.
With a carefully set up environment (Enya and computerized lighting!) I found the experiences to be very positive, characterized above all by powerful feelings of peace and wellness.
Today, after doing 200mg last night (and using up my supply) I feel very good. Not at all high or hungover in any way, just awake and alive and OK. I have no illusions about having awakened into a magical new reality, but I *have* awakened into a new day that I feel more-than-usually capable of facing in an empowered, healing way.
So. I will continue the TMS, hopefully from a somewhat better position. And if the next few days/weeks suggest that the ketamine helped, I will be seriously considering going in for the clinical infusions. Though I may still do some additional self-medication before then, not sure — I really don’t like the uncertainly of taking black market drugs, but what I’ve found here seems to be helpful and it’s certainly a hell of a lot cheaper than the infusions. And there are risks with everything, including failure to act when action seems necessary.
We shall see.
Nothing personal, but I have a problem with the idea that, “You’ve only been doing this for a month, so zero evidence of efficacy means nothing. In fact, you have to keep going for another two months, and then you may have to wait ANOTHER two months after that before you can tell if it helped.” That’s FIVE MONTHS total. Yeah, maybe that’s just Cruel Reality and I’m just pointlessly shaking my little fist at the sky, but I’m more than a little skeptical about a treatment protocol with no hard criteria for unhelpfulness over such a long period, combined with a willingness to give it credit for improvement that comes months after it’s stopped.
IMO, if 20 treatments isn’t enough for SOME efficacy to manifest (if it ever will), if 20 treatments isn’t enough for a specialized doctor/technician to be able to say, “Yes, this looks to be helping” or “Sorry, it looks like this isn’t the treatment for you”, I really have to wonder “Why not? Why can’t you tell me anything?” Is the technology truly THAT immature that its own practitioners are THAT limited in their insight into what they’re doing? This is scary in itself. Or is it just a variation on the general clinical practice of allowing psych patients to continue talk therapy indefinitely because they can’t be SURE it isn’t helping, and it MIGHT, eventually? Call me cynical, but I’ve been jealous for years of psych professionals who work in a field so largely free of requirements to demonstrate their treatments are accomplishing anything.
Having said that, I’m getting the DTMS without $$$ cost to myself, and I have the free time, so I may as well continue to the end of the treatments, bitter or sweet as that may eventually be. If I were paying for this myself, though, out of my own pocket, I would right now be being a LOT more demanding of my doctor and technician for assistance in determining what exactly they are doing to my damn brain.
Regarding ketamine: it’s funny, the ketamine person I was talking to earlier said almost exactly the same things you’re saying, but reversed: for her, TMS is time-consuming, unpleasant, usually unhelpful, never curative, and even when it is helpful requires constant “topoffs”… whereas (again, for her) ketamine is fast, enjoyable, and more often than not dramatically helpful! Interesting, eh? She emitted a particularly emphatic note of disbelief regarding the claim that TMS offers ***REMISSION*** from severe depression, and I have to say, I share her skepticism. Good Lord, one TMS marketing brochure blares “REMISSION ACCOMPLISHED!” — an outrageous claim you’d think they would avoid after the trouble the original slogan got George W. Bush into.
In any case, I’ve decided NOT to pursue ketamine infusion for now, largely because the logistical complexity of continuing both treatments together is kind of overwhelming. If I get to the end of 8 more weeks of TMS, though, and have not clearly benefitted, I will probably move on to ketamine, either via clinical infusion or extrajudicial self-medication with similar controlled dosing.
Thanks for taking the time to reply, and please excuse any intemperance of mine. This is a hard time for me.
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P.S. — Please don’t take my remarks about “remission” as disputing the experience of anyone who has, indeed, experienced that, in terms of the standard clinical criteria. I guess I’m taking it more in the sense of “complete, permanent, self-sufficient CURE”.
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This reply was modified 6 years, 2 months ago by
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