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Lajp,
Congrats on your Kappa District position. I am glad things have been going well for you. As for the doctor, was he the one who performed the treatment? I bet not. I hate to be a cynic, but a lot of p-docs that don’t offer TMS speak of it in negative terms because it’s their competition. Most of these doctors are myopic morons. They have their depression playbook and if you don’t respond to the treatments in their playbook, you’re sh!t out of luck. If you’re not comfortable with this guy or find him to be arrogant and condescending, it’s time to more on to another doctor. Don’t waste another hour with him. My wife has wasted years of her life on doctors that had no answers for her, but lots of useless prescriptions that gave her lots of side effects and no benefit—some made her so much worse than just the depression alone.
On the bright side, there are good p-docs out there, but you need to really look into them. Unfortunately, the good ones never seem to take insurance. 🙁 As for rTMS, my wife is on treatment 31 today and I don’t really think it’s done that much to help her–but it might be too soon to tell. In clinical practice, the results are very good and they do last a long time. I have never heard of it lasting only a month. If it made you feel better, than it should last for months or years. If you start to back slip, you just go in for four or five treatments to get topped off. Once a responder, always a responder. It sounds to me like you’re new p-doc is a moron (my wife and I have had more than our fair share of those).
In any case, TMS, ketamine, SSRI’s etc.—can only work effectively, if you have all the raw materials necessary to have healthy brain function. It should come as no surprise that most people that are treatment resistant are missing something necessary to allow these treatments to help them. My wife didn’t have a particularly strong respond to ketamine or any other treatment. Even the TMS hasn’t seemed to do much for her yet (she’s getting her 31st treatment today). Fortunately, her p-doc was smart enough to give her a genetic test and blood tests (covered by insurance), which revealed to us that she had a genetic issue with her MTHFR gene that severely blocks her ability to process folic acid and turn it into L-Methylfolate. This blockage means prevents her body from making neurotransmitters, including dopamine and serotonin. You can give all the SSRI’s and other treatments in the world, but if her body lacks the building blocks to make those neurotransmitter, no treatment would help. It’s like getting all the materials to build a house, but you don’t have a hammer and saw. This same MTHFR genetic issue is believed to affect more than 70% of people that are treatment resistant–although the degree it impacts them varies in severity for each person. There is a protocol of supplements that you can order from Amazon (or get as a prescription from your p-doc [although this is expensive and unnecessary[), that will a allow people with this issue to bypass this blockage. I strongly suggest anyone reading this google MTHFR and treatment resistant depression. Here’s one good article on the issue: https://www.psychologytoday.com/us/blog/evolutionary-psychiatry/201607/methylfolate-and-resistant-depression I can’t believe we have been fighting this battle for so long and we never knew about this problem. It should have been so obvious!!!!
So, in the past two weeks, my wife has been taking these supplements and it’s been a bit crazy since she’s now getting flooded with neurotransmitters for the first time in her life (which can be overwhelming), but it’s actually now allowing her SSRI and TMS to start actually helping. So, I expect that once we get through what’s called the “healing crisis” phase (when you feel like crap before you feel better), this is going to work out. I only wish we had known about this years ago—but again, so many p-docs are stuck with their old playbook that they don’t think about any solution to help patients that don’t involve write a prescription of some drug promoted by a cute 27 year old big pharma rep that took them out to dinner a few times.
Anyway, I wish you the very best of luck and don’t let this idiot doctor get you down.
–Eric
patjrvj.
I hope you’re doing better this week. I want to tell you a little about what my wife has been dealing with and I think it may have a lot of bearing on your situation. By way of background, my wife hasn’t really been seeing much benefit from TMS or Ketamine and, of course, SSRI’s and SNRI’s have done little to help her in years. She also did very poorly on atypical anti-psychotics and all the usual adjunctive therapies. So, her doctor ordered a genetic test for her and it turns out that she two mutations on her MTHFR gene, which causes a 70% reduction in her body’s ability to create the MTHFR enzyme, which is needed turn folic acid into L-methylfolate. This in turn blocks other down stream reactions, including the produce of SAM-e and certain other building blocks needed to produce seratonin, dopamine and neuroepinephrine and certain other key neurotransmitters.
Having this genetic defect does not mean a person will suffer from depression (although the degree certainly makes my wife far more prone to depression), but it definitely means that when a person does suffer from MDD or BP, they will be very resistant to treatment. My wife is also deficient in B12, which reduces her ability to create serotonin and red blood cells (among other things) through the methylation process. She is also deficient in vitamin B6, which makes it harder for her liver to clear toxins. Combined with her methylfolation issues, she has high homocystein levels, which causes inflamation of parts of her brain, liver, gall bladder and GI tract.
So, for years, my wife has suffered from treatment resistant depression, anemia, acne, PMDD (which is like severe PMS) and motion sickness. You might not think these things were connected, but the root cause for these problems is that darn genetic error that is blocking methylation cycle. When it comes to depression, this blockage (which is severe in my wife’s case) actually makes the usual treatments for depression toxic for her. She gets every side effect and little to know benefit.
Fortunately, it’s very easy to resolve this problem since you can take L-Methylfolate in high doses and completely bypass the blockage, along with certain necessary vitamin B co-factors. We literally just learned this last week and it was completely eye-opening!!! Fixing the methylate cycle isn’t a cure for depression, but it makes all the other things that were not helping the depression work again!!!!
I don’t know if you have had any issues with PMDD, anemia, motion sickness etc., but there is a strong connection between the MTHFR gene mutation and fibromyalgia. Google both words and you’ll see thousands of papers and articles on it. If you’re methylation process is blocked, you’re not producing enough dopamine, serotonin and norepinephrine–which is a big contributing factor for depression. The methylation process is also responsible for the production of other neurotransmitters, including melatonin, GABA and glutamate. When your serotonin and melatonin, dopamine and norepinephrine, and GABA and glutamate neurotransmitters are out of balance, your nerve signals are not functioning properly and your CNS misfires systemically. You feel this in the form of pain—i.e., fibromyalgia.
If I were a betting man, I bet that you have at least one MTHFR mutation that is impacting the methylation cycle for you and possibly other vitamin deficiencies. You should have your doctor do a genetic test to see if you have this mutuation and the extent that it is impairing your methylation cycle, He should also do a blood panel to check your serum levels for homocystein and for vitamin deficiencies.
In the meantime, the connection in your case seems so obvious (now that I have read about 40 hours of material on this subject) and have spoken at length with my wife’s doctor, you might want to start taking the supplements now—you don’t need a prescription since high dose L-methylfolate just became available without a prescription in the past couple of years. My wife’s doctor gave her a prescription for Deplin, but it wasn’t covered by insurance and cost $180 for a month’s supply. This is totally unnecessary since you can get the same thing at the same dosage without a prescription for less than $60. Ultimately, you want to take 15mg of L-Methylfolate. https://www.amazon.com/MethylPro-B-Complex-L-Methylfolate-Formula-Capsules/dp/B0731TFNJ7/ref=sr_ph_1_a_it?ie=UTF8&qid=1522097144&sr=sr-1&keywords=methylpro However, you’ll need to take more B-Complex factors to aid the process. So you’ll need to take at least 3000mcg of B12 and 200mg of B6. If you decide to take these supplements, don’t start at 15mg on the first day. My wife made that mistake and she went off the deep end!!!! You need to start small. Take the B6, B12 and 2.5mg of L-Methylfolate to start in the morning. We bought 5mg tablets to start: https://www.amazon.com/MethylPro-L-Methylfolate-Professional-Strength-Capsules/dp/B0731TN7P6/ref=sr_1_7_a_it?ie=UTF8&qid=1522097495&sr=8-7&keywords=MethylPro&dpID=41ff52A1%252BGL&preST=_SY300_QL70_&dpSrc=srch Break those in half, so you’re taking 2.5mg to start in the morning, along with vitamin B6 and B12. You need to do this to clear the backlog of crap that has been building up because your methylation process is blocked up. If you tolerate the 2.5mg for 3 days, then take 2.5mg in the morning and 2.5mg at night for another 3 days. Then take 5mg in the morning for three days. If that goes ok, then take 5mg in the morning and 5mg at night for three days. If that’s still going ok, take two 5mg tablets in the morning and one 5mg tablet at night for three days. If you tolerate that well, then you go can start taking the 15mg with complex-B in the morning.
As you can see, you have to start this process slow and move up in baby steps. If you awaken the methylation process too quickly, things can go haywire fast because you’re flooding your nerves with all sorts of neurotransmitters that they are not used to processing. MY WIFE DID THIS BY ACCIDENT. She had samples from her doctor that had different names and didn’t realize it was all the same thing. She took 22mg of L-Methylfolate last Tuesday and the effect was freightening!!!! You can go from feeling on top of the world to want to rip people’s heads off or crying uncontrollably in less than an hour—literally!!! However, my wife’s mistakeis easily avoided by starting slow. Moreover, you can also if you start to feel the signs of over-methylation (start getting a little nutty feeling, maybe a bad headache etc.), you can take 50mg of niacin every 20 minutes or so until the symptoms are gone. So, you you would want to keep a bottle of niacin handy at all times. https://www.amazon.com/Source-Naturals-Vitamin-Metabolic-Support/dp/B001B4OYYC/ref=sr_1_17_s_it?s=hpc&ie=UTF8&qid=1522097880&sr=1-17&keywords=niacin Since this is the lowest dose I could find, you just have to break the pill in half.
By the way, this is not a replacement for taking your other meds. My wife is still taking her Viibryd and Welbutrin, but fixing this problem will actually allow those meds to start working (which happens fast, since she already has them in her system for months/years). So, after the initial two days of hell (which never should have happened if my wife had listened to the instruction she had been given), she took a day off from the meds and then started back up at 2.5mg. That day, my wife feel really darn good. She’s now up to her second 5mg a day (2.5 morning and 2.5mg at night) and she is tolerating it well. She didn’t need her niacin today. Best part is, when I called her to ask her how her day was going, she told me “I am doing well. I had a really nice day.” Uhhhhhhhhhh…… I haven’t heard that from her in years–even after ketamine and all these TMS treatments!!!!!!
WARNING: Some doctors and medical sources (including WebMD), will tell you that L-Methofolate is well tolerated even at 15mg and can be taken right away. This is WRONG. The studies these p-docs and neurologists read (my wife’s p-doc is a neurologist also) talk about dossing, tolerance and efficacy in very general terms. However, if you go on the forums and do your own homework and watch lectures to doctors given by naturopathic doctors, they’ll explain how you have to titrate the dosage and the very serious issues that can happen if you start at a very high dose. Most p-docs seem to be unaware of this because the studies done on the high dosing and TRD didn’t specifically consider how it effects people with MTHFR genetic issues (which effect them to varying degrees). So, even if you can start out at the high dose used in those studies right off the bat, why chance it? Start slow and build up will is still the way to go.
Obviously, my wife and I are still at the beginning of this supplemental journey, but so far things are really looking up. We have suffered with this depression (and anemia and PMDD) for years and nothing ever seemed to work. Now we think we have an answer for the first time!!!! So, now that we are clearing this metabolic blockage, the TMS and meds can finally do their job. I think there might be light at the end of this tunnel!!!!!!!!
Patjrvj,
I am sorry to hear about the about the possible fibromyalgia diagnosis, but I am surprised you received a diagnosis for fibromyalgia so quickly. Since you are associating the fibromyalgia with the dTMS treatment you were receiving, these symptoms must have come on pretty quickly. FM is, however, not a disease that is diagnosed quickly. Usually it’s diagnosed by a process of eliminating other possible diseases, including, including lupus, rheumatoid arthritis, lyme disease etc. I know several people that have had or thought they had FM and it took months to get a firm diagnosis. Also, depression can have psychosomatic symptoms that can resemble FM. Ironically, the treatments for FM and depression are often similar. Scientists are experimenting with the use of TMS to treat FM and ketamine has long been used to treat the symptoms of FM. Between the time you wrap of TMS treatment and become eligible for a second round of treatment, would you consider trying ketamine infusion therapy?
–E
Hey patjrvj,
I am not doctor, but after reading a LOT of threads and seeing what my wife is going through (she’s up to treatment No. 23 today), everyone seems to respond differently–but most people seem to have a TMS dip at some point along the way with treatment. Some people get it during treatment, some get it after its complete. It’s part of the healing process–even though it doesn’t feel like healing at all. You should talk to your doctor about it, but the DIP is very common. You may need a few more treatments to while you go through the dip, but it can last a few days to even a couple of weeks. I wouldn’t give up on the treatment just yet. I don’t think you can judge whether the treatment was a success or failure until a month or two after the treatment is completed.
–E
Just wanted to give a quick update. As rough as last week/weekend was, this week was quite the opposite. I can’t say whether it was the higher ketamine dose or the TMS finally kicking in (or some combination of the two), but my wife had three good days in a row–starting on Friday. Her mood was upbeat, she had a lot more patience to deal with frustrating things and seemed pretty happy overall. The headaches seemed to subside and her energy was back. She wanted to go out and do stuff and not lay around the house. She also told me she was experiencing vivid, colorful dreams. Not all the dreams were good, but they were colorful at least–instead being grey or black like they usually are for her. Anyway, I “think” we might have gotten through this Dip–so fingers crossed that this continues on a positive note.
Hey Colleen,
We’re still fighting the good fight. We’re up to treatment 21 today. Unfortunately, she had her TMS Dip last week and into early this week. It was really bad–about as bad as I have seen her. Bad enough that she was talking about how she would be better off dead and we’d be better off without her. That kind of talk–which I rarely heard her say (even if she may have had those thoughts in the past). Her doctor upped her ketamine dose considerably on Monday and she was wiped out the past couple of days. Yesterday, she seemed to be doing better–not great–but about where she was before the DIP. She’s also been complaining about headaches running across the front of her head. It’s not easy, but I’ll take it as a sign that the TMS is kicking in and she’s starting experience changes in brain function. These particular changes haven’t been pleasant, but I’ll chalk it up as part of the healing process. It’s the end result that matters and hopefully this was just one of those bumps in the road. That said, doctors and those darn TMS brochures should really give people a better heads up that many people that go through this experience the DIP–so they aren’t so shocked when it happens.
Thanks so much for checking in Colleen. It means a lot!
–Eric
Stingray,
I think you misunderstood my post. I am not second guessing your doctor, but there’s a game that you guys have to play with the insurance company. They won’t cover any investigational treatments, so you have to go by the book with them. He just has to tell them that you had X number of treatment and you are showing some benefit, but more treatments are necessary in his medical opinion. For all you know, this treatment is working and will work for you, you just have felt the benefits yet. In short, you can’t say, I got mostly right side and need more left side—you just omit the specifics unless asked (and then you say what you need to say to get the treatments approved).
As for ketamine, I am not knocking it all. It does help and for some people, it’s the only thing that helps them. When TMS is successful it can result in a lasting remission which can extend for years with a handful of maintenance treatments along the way. That’s almost never the case with ketamine. If ketamine works well for you, you can expect that you’ll need to go back once every 4 to 6 weeks for a top off after the initial six treatments. Some people can go longer and some people need it every week. That’s not an ideal solution, but it may be the one that works best for you. It certainly worth a try and if you can find a doctor that will administer ketamine via intra-muscular injection instead of IV, it’s not that expensive (relatively speaking). Also, while ketamine isn’t covered by insurance at the moment, Jansen’s Esketamine intranasal spray has completed phase III testing and the rumors are the results were excellent. J&J will be submitting it for FDA approval soon and it will probably be on the market before the end of the year (maybe sooner). If you’re still feeling crappy a month after TMS is over, I would definitely give ketamine a try and you can transition over to Esketamine, which will be covered by insurance, once it’s approved.
Ketamine has helped my wife quite a bit, but it hasn’t been a magic wand that waved the depression away. It did make things a lot more tolerable for her and it does help a LOT of people. My wife is still getting the ketamine shots. Having them administering while she is getting TMS sort of ruins the experience. When she got them on their own and was just able to zone out without a woodpecker picking at her brain, she enjoyed the experience quite a bit and looked forward to going to her treatments.
I know it’s hard when you feel like total crap to see a brighter future, but that’s depression whispering in your ears. There are a lot of things out there left for you to try—seriously. Depression treatment research was pretty dead for a while, but there’s a now a lot of stuff in the pipeline. If rTMS didn’t work for your, there’s also dTMS, which has helped a lot of people that failed on rTMS. There’s also theta wave treatments that are coming out and a bunch of new drugs in the pipeline that work on the glutamate system–similar to ketamine. Also there’s promising work being done on psilocybin, which is also showing a lot of promise. In addition to Esketamine (which is really exciting), there’s a flurry of other new meds, unique meds and treatments that will be on the market within the 18-24 months and other will follow.
I hope TMS does the trick for your, but if it doesn’t, there are other good options out there. This is not your LAST chance by any means. I see plenty of people say things like that but it’s just negative depression talk. It seems real to you, but it’s BS. You’re going to be ok, but you need to keep your head in the game. Remember though, lots of p-docs are very conservative and they are stuck in their playbook. They don’t like to change their ways or try new things. Why do they through darts at a board, when they could do genetic screening to narrow the medical option right from the outset? Unfortunately, I am convinced that these doctors rely on a business model that requires patients to constantly see them every 4 to 6 weeks or more, so the dart board approach is good business for them. You need to check the psychiatry journals and get comfortable with their language so you are on top of the situation and aren’t rely entirely on a doctor to tell you what’s best for you.
Unfortunately, I have had to go through an experience with my sister who had a rare form of non-hodgkin’s lymphoma and the treatment the first oncologist she met with was pushing was based on old data and wasn’t the latest and greatest. We did a lot of homework and we questioned the doctor and he didn’t have great answers for us–since it seemed he didn’t do his homework because he was a a lazy @sshole. We went to two other doctors before we found one that understood what we were talking about and gave a good feeling that she was in good hands. Because we were our own advocates, she’s alive and well today—cancer free for 2 years. Depression is psychiatric cancer and you need to always be your own advocate. Finding the spirit to fight this illness (and that’s what it is), is half the battle.
Stingray,
The doctor could have given you left right treatment at the same time—on hour long treatment zapping both sides of the brain and it would still only cost him the same $100 fee to neurostar. At the same time, maybe you just needed it all on one side and that splitting the different undercut the effectiveness of the treatment. I think you need to discuss this with the doctor and if you need more treatments he should ask for them because it was his decision how he chose to administer the treatment to you. He can’t just cut you loose because his off label use of your insurance approved treatments didn’t have the desired effect in the treatment allotted. In any case, you haven’t had enough left side treatments to know whether TMS is the answer, even with the remaining 8 you have left. Hence, the reason I think you haven’t been able to give TMS a fair shot.
In any case, there are other options out there besides the usual combos of meds. Ketamine is a good option and maybe better for you than TMS. If that’s not in the cards and TMS isn’t getting it done, there are some new ketamine based meds that are nearing FDA approval, including esketamine which will be out sometime later this year.
Another outside the box option you may want to look into is tDCS (transcranial direct current stimulation). You are essentially stimulating the same region with tDCS as you would with TMS using a low voltage electro current for 20 minutes a day. There’s plenty of studies on it, but for the moment its not FDA approved. You can buy a tDCS device and a book of montages which tell you how to place the electrodes on your head to treat anxiety and depression. It can used for other things too. I know that the navy and airforce use this to help improve pilot performance during training. They are using fancier machines (obviously), but the principals are the same. If you do some google searches and search youtube, you’ll find a lot of stuff out there on it. Here’s one news story:https://youtu.be/P68I4rTZo04 In my research, the best device appears to be this one: https://www.amazon.com/ApeX-Type-18V-Accessories-included/dp/B00YG4D6UW/ref=lp_2528940011_1_7?srs=2528940011&ie=UTF8&qid=1521064913&sr=8-7 I am thinking of trying it out to treat my ADD since I don’t like the side effects from my meds.
–E
Hey Stingray,
Don’t write off the TMS just yet. First off, if you and your doctor think you could benefit from more treatments, the request for approval can be written so you can get that approval. My wife is technical off the FDA protocol too–since she is getting both TMS and Ketamine. The doctor doesn’t have to explain how each treatment was administered in the request for approval—only that the prescribed treatment were administered and there has been signs of improvement. Obviously, it isn’t fully effective or you wouldn’t need more treatments. I just wouldn’t give up on this so fast. If it can work for you, it’s a much better alternative than meds.
–E
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).
Hey Stingray,
As for her actions towards me, I have been down this road before and when things get bad for her she takes it out on me. I totally understand how depression can warp a person’s perception and actions, but I will not be her whipping boy. What I normally do when she gets like this is just disengage from her and leave the room rather than fight with her. This weekend, it was the fact that I was disengaging and leaving that caused her to escalate. I told her if you’re going to treat met like sh!t and I am just going to leave you alone. It wasn’t rational behavior on her part, but I have definitely seen it before. In any case, it sometimes has to get this bad for her to acknowledge there’s a problem and address it. She told her doctor yesterday about what happened and how she was feeling and he upped her dose of ketamine and I am going to guess that he’s probably upping the intensity of the TMS–which is what i wanted to talk to you about.
First off, many people that respond to TMS and do very well on it, don’t necessarily get to full remission after the FDA prescribed 36 treatments. Some people need more—50, 70 etc., Also, some people need higher frequency and longer duration treatments than the typical 37.5 minutes. If you’re experiencing some, but not full benefit, from TMS, your doc can apply to your insurance carrier for approval for additional treatments–which they will generally approve.
Second, as for the genetic testing, getting a red or yellow mark for a certain drug doesn’t mean it shouldn’t be used, only that there are factors that my require additional observation. If, for example, your a slow metabolizer for a certain drug, you doctor might prescribe a lower than normal dosage (or a higher than normal if you’re a very fast metabolizer). If the doctor is aware of your genetic disposition in advance, it can save you a lot of time and bad experiences with doctors having to spend months tweaking the dosage for you and there may be other meds out there that are better for you (particularly if you have had issues tolerating certain meds in the past). My wife’s biggest complaint with past doctors is that they never seemed to know what they were doing and it always felt like a guessing game to her–which it was. These tests can help reduce the amount of guessing required on several levels. It won’t get rid of the guesswork entirely, but if it could reduce the time it takes to find an effective combination down from 2 years to 3 months for many people. I also think those tests might be helpful when it comes time to fight with insurance carriers for novel treatments and medications, particularly if you have a lab test (which they will pay for) that helps to prove you can’t tolerate the cheap crap they want your doc to prescribe to you. There’s some new meds that will be coming out soon and the insurance companies aren’t going to jump to cover them without proof that other meds failed or can’t be tolerated.
Most of “us” have probably had enough years of really bad experiences to convince a carrier to cover us on the new drugs so it might not be such a big deal for “us”, but think of the person that just started off on this wonderful experience–who is genetically treatment resistant. This could save them a whole lot of time and suffering so they can get the care they need without having to try three or four different meds over the course of a year or two that only give them side effects and no benefits. Anyway, these genetic tests are constantly being improved and updated. In a couple of years it will really make a difference.
Anyway, keep up the good work and try to keep your spirits up too!
–Eric
Hey Stingray:
My wife has No. 18 scheduled for today, but it’s been a rough weekend. She seemed to be doing ok at the end of last week and even Saturday, but she crashed yesterday. I think she is going through the dip. She was nasty to me for a good part of they day and spent a lot of time this weekend in bed, both Saturday and Sunday. Sunday night she made a few nasty comments to me in front of the kids and just got pissed. I told her that I understood she was having a bad day, but that taking out her frustration on me isn’t the answer. It spiraled down from there until she was crying hysterically saying how she doesn’t want to wake up in the morning and how we would all be better off without her. She feels hopeless like there’s a black hole inside her brain and it’s never going to go away. This morning she couldn’t get up to go to work and called in sick. I am really worried about her. I called her a little while ago and she was still in bed and complaining about having a headache. I know this will get better and it’s part of the process but it doesn’t make it any easier. I haven’t been able to focus at work today and I just feel really crappy and worried. I just hope she goes to the doctor and feels a little better afterwards.
On the positive side, my wife’s p-doc did a a cheek swab on her on Friday and sent it in to a lab for genomic testing to determine a more effective course of drug treatment for her. I did some research on these tests over the weekend and it’s pretty interesting tech. It can tell you which drugs are most likely to work for your, which you need to be careful (and to what degree) and which to stay away from. I think it can take a lot of the guess work out of the drug prescription process. Maybe its’ something worth mentioning to your p-doc?
–E
Hey Stingray,
I hope you’re hanging in there. Usually, anxiety and depression are like twin sisters, but it’s not always the case. I personally suffer from anxiety but not depression. In my case, thought, the anxiety is based on my fear for being constricted and not being able to breath comfortably. It’s part claustrophobia and part something else—call it my craziness.. It started out because I had serious problems with my sinuses that required multiple surgeries with some success, but the anxiety never left me. If I am in a stuffy room or just get some thought of being in a restricted space, I start to freak out. Klonopin helps, but it takes a little while to kick in. I have attacks while driving and I even had one this weekend when I was getting a massage—which is suppose to relax you, but I started to get an attack. I was able to do mindfulness exercises to prevent it from becoming a full blown attack, but sometimes even the mindfulness exercises can make things worse. My dad gets the same types of attacks too, but his are less frequent. I also take Adderall for ADD, which is known to cause anxiety–so that’s a contributing factor for me. I have tried cutting back significantly on my dosage, but it’s always a balancing act.
I do use CBC oil, which can be purchased legally anywhere. I think it helps with the anxiety a little, but wife says it does nothing for her. Hypothetically, I might use marijuana at night in small doses, along with a .5mg of klonopin, which helps me sleep comfortably and wake up the next day without any “hangover”. I would otherwise need 1 or 1.5mg of Klonopin, but I then I have trouble getting up the next day and it causes me to sleepwalk, which can be very scary. The last time I took 1.5mg of Klonopin, I had a dream that I was walking a long distance to the bathroom to pee. I had a quasi-emersion from my dream to find myself standing at the top of my stairs in my house starting to pee down the stairs and had to stop myself mid-stream!!! The prior time I walked into a door jam. The combination of marijuana (hypothetically of course) and .5mg of Klonopin seem to have the intended effect without the risky side effects (sleep walking is not fun or funny–you can really hurt yourself).
We have very limited access to real medical marijuana in NY and no clinics around us. Medical marijuana was signed into law in November, but actually getting clinics opened and getting prescriptions is going to take time. Of course, we can always get it the old fashioned way, but it doesn’t really help my wife at all–in fact, the last time we used it together it made things a lot worse. I suppose with the right strain, it can help, but we aren’t very sophisticated with these types of things yet.
In any case, just stick with the program. It may not be a “cure” for depression or anxiety, but it may make things a lot better and make other treatments more effective–like your old meds or therapy. Keep up the good work and know that our prayers are with you.
–Eric
Hey Lajp,
Check out my response to today on stingray’s thread. I think it applies to you too. 🙂
–E
Stingray,
Regardless of the cause of your depression and anxiety, the treatment for depression and anxiety would be the same. Like I said earlier, kill the snake that’s closest to you. The “what if I don’t respond to treatment for CLD because I may have contracted it back in 1999” is one of those snakes on the other side of your proverbial room. You would need to go through 20 steps just to get to the point where that is a real thing to worry about. For now, focus on the problems that are right in front of you—the ones that you can actually try to do something about. The treatment went well for you the other day, so that’s something to feel good about.
One of the main themes I have been reading both in your thread and many others is the fear and disappointmet people seem to experience because they can’t tell if the treatment is working. The feel good one day and after the next treatment they feel horrible. This treatment is going to have up and downs–believe me when I say I am seeing those in my wife right now. She was doing great last week. She was pretty energized on monday, but the rest of the week has been pretty awful. This is just the way it goes with these treatments. Here’s an analogy:
Imagine you had a problem with your knee or back that caused you a lot of pain. You may need surgery to repair that problem and relief that pain. When you get out of surgery, you can expect to be in more pain that before you went in–because that’s the way this stuff tends to work. No one has ever gotten out of orthopedic surgery feeling pain free and and ready to run a marathon. Why should you expect a treatment for depression like TMS to be so different? Right now, you’re using a powerful magnet everyday to change the polarity of the neurons in your brain which stimulates them to awaken and create new pathways. Those pathways have to form and connections need to be made as part of the healing process. This takes some time and, considering that you are stimulating that part of your brain that effects your emotional responses, you should have some ups and downs until the connects form and your brain functions stabilize. In short, you can’t focus on day to day “changes” or moods your experiencing. You have to look at this as longer term healing process–as if you’re recovering from a physical injury (which, in a way, you are).So, how do you know if the treatment is working and that you’re out of your depression? If you expect to be hit one day with a magic bolt of happiness, you have the wrong expectation. No one goes through TMS, ketamine or any other treatment and walks out of the doctor’s office with all the clouds permanently lifted, angels singing in their ears and beautifully people are cheering your name. This is all about ups and downs, which we hope will trend in a generally upward direction like a stock market tracker. In the end, emerging from depression does not mean reaching a point where you feel at peace and you have achieved zen. If you want that, you will need to join a Buddhist monastery and spend the rest of your life in meditation. Not having depression means that you get to experience a normal range of emotion, including happiness, stress, relaxation etc. TMS is not going to change your core personality or give you something you didn’t have before you were depressed–it will just take away the symptoms of depression.
When you do being to emerge, the signs will be subltle. You may still feel like you have a low mood, but you might find that you’re able to still get up and clean the house, pay the bills, run errands and generally function better. You might be able to go to a social event and you won’t be wracked with anxiety or staring at your watch ever five minutes waiting until you have been there long enough so that you can excuse yourself and go home to get in bed. Eventually, form (mood) will follow function. When you’re able to do more stuff and have more energy, you’ll find that you feel good about having some new abilities and improved function–even if you’re mood still isn’t great. Ultimately, you’re mood will come along for the ride and you’re start actually ‘feel” better and find that some activities are giving you joy again. You’ll still have good days and bad days because that’s what normal/healthy feels like.
Unfortunately, the marketing for mental health products including TMS, Ketamine and every drug ad on TV sells this idea that their product will bring you peace, zen, bliss and happiness. They create unrealistic expectations. Ideally, these treatments return you to YOUR non-depressed state. If you are a pessimist at heart and always were, TMS isn’t gong to turn you into an optimist. If you have are an introvert and have a shy nature, it’s not going to turn you into an extrovert that is the life of the party. What it will do is make you feel whole again–like the person you once actually were in the past before your depressive episode and not an idealized, perfect version of that person.
I really hope this helps!
Hey Martin,
Hope you’re having a good day. I agree that there’s no harm in asking for a prescription and that would be much more preferable than the the DIY treatment you are doing. As for that pharmacy, I have no experience with it but there are doctors that administer ketamine to their patients intranasally and they do write prescriptions for this stuff. Whether your doc will give you a prescription is another story. Some of those docs will administer it to their patients in their office, others will let their patients do it at home. He definitely will not give you a prescription for a bottle to inject. I can’t imagine any doctor in their right mind doing something like that. Anyway, let me know what happens after you ask. 🙂
–Eric
Hey Stingray,
I live on Long Island, so I am pretty familiar with LD. I know a bunch of people that have/had it, including some family members. I guess you’ve been doing your homework. People with CLD seem to be much more prone to depression and anxiety than the population in general, but the researchers aren’t sure if CLD is a direct neurological cause of depression/anxiety or the fact that people with untreated CLD tend to be in more pain and discomfort, which triggers the depression. I didn’t want to say anything about this in my last post because I didn’t want to trigger a negative thought loop for you–but obviously you know this already. In any case, that still doesn’t change the fact that it’s unlikely you have lyme disease. Looking on the bright side, CLD can be treated and controlled with antibiotics. In many cases, when CLD symptoms resolve and go into remission, the symptoms of depression also seem to resolve themselves–again, they aren’t sure why. Nevertheless, if you having an extended bout of depression , you’d still get the same treatments whether the cause of the depression were CLD or something else. None of this is pleasant, but it also shoudn’t feel like the end of the world. I have a good feeling this going to work out just fine for you. 🙂
Hey there LAJP,
Just checking in to see how you’re doing. After reading your post from yesterday, it sounds like you were in a much better mood. Maybe you can string two of those days in a row???
–E
Hey Martin,
I hope you’re having a good day. I am sorry to hear that you don’t have any friends or family to help you through this process. That can’t be easy. What state/city are you living in?
As for the Diy, I am definitely not one to judge people. If the DIY ketamine is giving you relief, it’s your body and mind, so you do what you need to do. That said, snorting is probably the riskiest way to go. Ketamine can be really potent stuff and it’s hard to regulate dosage when you’re snorting powder. If you can’t make it to a clinic or doctor that can administer ketamine via IV or IM, why don’t you ask your p-doc for a prescription for intranasal ketamine. While you can’t get it a Rite Aid or CVS, most compounding pharmacies can fill it for you. https://www.pavilioncompounding.com/blog/ketamine-nose-spray-for-depression-and-pain-management At least this way you’re getting a metered dosage and it would be legal. It is also possible to get a bottles of medical grade ketamine online in liquid form and you can buy syringes. At least this would enable you to try to follow a medical protocol. You can give it to your via IM–just watch a youtube video on how to give an IM injection. While none of these are good options, they are better than snorting powder.
Hi Martin,
Thanks for the good wishes. I started responding to your post and ended up with a ridiculously long post, some of which is just me processing all the crap we have been through the past few years and regurgitating all the stuff I have studied and read trying to find an answer to our problem. I’ll put in headings so you can read what the parts that interest you and skip my self-reflection sessions
- Hitting the Bottom and Finding New Hope
Our family has been through a lot over the past couple of years and it hasn’t been easy for anyone. You said you’re surprised my wife was able to sustain hope through these bad experience with her doctors and her illness–well, she didn’t for a while. She pretty much gave up and just wanted to handle it all on her own–which meant isolating herself from the rest of the world because she needed time to think. Obviously, this didn’t help the situation and any attempt on my part to help her or discuss the situation with her turned into WWIII. Things just continued to get worse over time—much worse. She became verbally abusive towards me and the kids and very selfish and self-centered.
After dealing with her declining depression for two years and months of abusive behavior, I started to sink into my own depression. I gained a lot of weight and started having panic attacks. I couldn’t sleep and I was having issues at work. I started seeing a therapist and my p-doc put my on lexapro and klonopin. After doing more research, I found doc no. 6 for my wife and started doing research on TMS and ketamine treatments. When I tried to discuss these new therapies with her, she told me to go f—- myself. As much as I loved my wife, I couldn’t take the situation any longer. Either she was going to get become an active participant in her recovery and get the help she needs or she had to find a new place to live because the kids and I deserve to live in a healthier environment.
I guess she got the point because, after that conversation, she made an appointment to see doc no. 6. After meeting with doc 6, something clicked for her. She finally found a doctor that listened to her and understood how she felt. She thought he was really kind and smart. He seemed to under the issues and he had a real plan for her. It always seemed like her other docs were basically throwing darts at a wall in the hope of getting some random drug combo that might help—but she never felt like they gave a sh!t about her or put much thought into her treatment (and they really didn’t). Doc 6 was different. Even without taking a single pill, her outlook changed after that first visit and he gave her hope and faith that things can get better.
- TMS Clinics and TMS Techs
I have definitely been in situations where you go to a doctor or some other professional and just get a bad feeling. Some of these insurance companies have their approved providers and they pay them next to nothing for these treatments so the only way they can earn a living is to limit the doctor’s involvement in the treatment and run the place like a mill. As effective as dTMS is (and it is known to work and it has some advantages over rTMS), but Brainwaves main selling point to doctors is the fact that they treatments take only 20 minutes (which is 17.5 minutes faster than rTMS) and their machines have heat sinks and cooling mechanisms so they can run without a cool down period. In Brainwaves’ sales material, they brag about the fact that doctors can treat three patients an hour with their machine compared to 1.5 patients an hour with the neurostar (rTMS) machine. In other words, it’s ideal for running a TMS mill.
So everything you’re saying about this TMS center is probably right–but doesn’t mean it won’t work. My wife’s doctor isn’t an insurance mill and he’s a great guy, but he’s still running a very successful and profitable business. The fact is you don’t need a doctor to run these machines. TMS in his office is also run by a tech. The doctor prescribes the treatment and dosage, but he’s not there when it’s administered–except on mondays and thursdays when he gives her the ketamine injections. My wife was a little disappointed that he wasn’t the one administering the treatments, but that’s just not the way this works. A good tech can do the same job and free the doc up to see other patients–that’s the only profitable way to administer these treatments and keep the costs in the realm of reason.
- DIY Ketamine Treaments??? Really???
Now, as for your little DIY project, please be careful. I understand why you wanted to go the DIY route with Ketamine, since it’s not officially covered by insurance and it can be expensive. Nevertheless, this stuff can be dangerous, not to mention it can land you in jail.. Putting my public service announcement to the side, if you’re going to play doctor with ketamine (don’t do it!!), the dosage you are giving yourself sounds really high!! You also didn’t mention how you are you’re self administering (injection, snorting, eating etc.).
The protocol used the first big study by Yale on treating TRD with ketamine (published in 2000) used a protocol based on dosage of .5mg/kg administered via IV over 40 minutes. No one knows if this is the best or most desirable default treatment, but it has been the default treatment in every published study since 2000. When I say default, this is generally where all treatments begin and/or its used as a reference point for ketamine infusion therapy. There have been studies on the efficacy of lower dosages and higher dosage but it always seems to come back to the .5mg/kg formula. Based on patient response, doctors often adjust their dosage and duration of treatment–but the variation for treating depression is generally between .1mg/kg to .75mg/kg with during of infusion between 2 and 100 minutes. The same type of dosage is used when administering KIT by IM or SC injection, with an upward adjustment in dosage to compensate for a lower absorption rate when compared to IV infusion.
For example, if you were a man that weighs 200 pounds (just to use a round number), the baseline therapeutic dose for you would be 45mg administered IV push with saline solution over a 40 minute period. If administered through Intramuscular injection, subcutaneous injection. If the ketamine is administered via IM injection, the absorption rate is 92% (compared to 100% if administered via IV), so you can expect that your brain would receive 41mg of the drug. A doctor administering ketamine via IM would increase the dosage to 45mg to compensate for the difference in absorption rates for the patient’s first treatment. Based on patient response to the baseline dosage, doctors will adjust the duration of the infusion and dosage amount to achieve the desired response–the dosage for this 200 pound guy via IM shouldn’t really go above 75mg. If you’re taking 200mg, for our 200 pound guy, that would be 2.2mg/kg–which is way too high (It’s getting closer to a recreational drug dosage).
My wife’s doctor is administering ketamine to her via IM injection She weights 110 and the doctor started her out at 25mg for her first session, which he administered in two separate injections (10mg for the first injection and 15mg for the second injection, which were spaced ~30 minutes apart). For her second treatment, he bumped her up to 30mg (15mg/15mg, spaced around ~30 minutes apart). For her third treatment and each treatment thereafter, she has been getting 40mg (20mg/ 20mg, spaced about ~25 minutes apart–which is right at the .75mg/kg mark). On her “optimized” dosage, my wife is not having any real “trips”—she’s not seeing her body from the outside or anything like that. She just feels very relaxed and heavy–like she can’t move her body, but it’s not unpleasant for her. She can’t really talk when the injections are kicking in, but that only lasts for 10 minutes or so, then it wears off pretty quickly. There have been times when her doctor has had to delay the second injection because my wife’s BP was too high or low and he won’t give her the second injection until her BP returns to near baseline.
- Ketamine Treatment Costs
In addition to not being a great idea to self-administer, ketamine treatments don’t have to be outrageously expensive. Some of the big NYC and California clinics run by anesthesiologists charged outrageous prices for their services, but competition for ketamine treatments has risen sharply over the past 2 years, so prices have dropped. One major NYC clinic was charging $750 for an infusion around this time last year, but now its down to $450 an infusion–which is a big drop. IM injections are just as effective and cost much less than IV infusions
My wife’s doctor generally charges $300 for a ketamine treatment via IM. If you’re a referral from another doctor and are just seeing him for ketamine treatments, it’s a straight charge. If, however, your his patient, his office will process out-of-network insurance claims (he’s not on any insurance network) and he bills the ketamine treatments as therapy sessions with an injection (since there’s no code for ketamine infusion/injection thereapy). Insurance carriers will generally reimburse some of the treatment cost this way. Although we paid $300 on the day of each of my wife’s six induction ketamine treatments, we got back $110 dollars for each treatment from our insurance carrier. So the actual cost of each treatment was only $190. Your mileage may vary, but $190 as the net cost per treatment is pretty reasonable and, given the significant and quick improvements it can make for someone with TRD, it’s a no brainer. I am not a rich guy, $1140 for the initial six treatments that have such a profound health benefit seems like a bargain (I spent more on a flat screen television 10 years ago). If you need a monthly booster treatment (and most people do), , $190 every month is very doable (I pay more than that for cable tv-which provides much less benefit to my family!).
While Ketamine is a big help to my wife, it doesn’t pull her completely out of the depression. For us, it’s an adjuct to other treatments and I sense that’s how it’s used by most people. We hope TMS (with ketamine) gives us a better result. While my wife worries that this might not happen for her (you know how those negative thoughts are!), there are more treatments and options coming down the line–so no need to despair.
- New Treatments
1. Esketamine
Johnson & Johnson has a new breakthrough drug in the pipeline called “esketamine”, which is a derivative of Ketamine, but is 3 to 4x more potent. It has been designed to be delivered intransally and can be prescribed for use at home. Patients take it twice weekly In November 2017, J&J completed its phase III studies and it published the results of its phase II studies. The Phase II study included 67 patients, which were divided into 4 groups. Three of these groups receiver low, medium and high doses of eskatemine, with group 4 receiving a placebo. The esketamine was administered twice a week for 8 weeks. The study showed that the highest dose resulted in the greatest benefit (but also had dissociative side effects associated with ketamine). However, at the 14 day point (4 treatments into the therapy) in the study, 50% percent of patients in the high dose group had significant improvement in depression symptoms and 40% achieved full remission from symptoms. This is a substantial improvement over Ketamine via IV, which only has a 30% response rate and 14% full remission rate at this point in treatment.
In a second part of the study, patients continue to participate for 74 days (receiving treatments 2x weekly, than titrating down to 1x weeks and 1x biweekly). The responders continued to respond throughout the treatment process and continued to show the same level of response 8 weeks after treatment was discontinued. These are significantly better results than those shown in IV ketamine studies.
J&J just completed its Phase III studies, which includes a much larger sample group and were conducted over an 18 month period to determine optimal dosage and duration of treatment and to study long term safety. The results from the phase III study will be published in April or May. Assuming the phase III results are consistent with phase II (which rumor suggests they are), J&J will probably file for FDA approval sometime in June or July. Since this drug has been designated as having breakthrough status (which expedites the approval process based on a dire need for the population), approval should happen quickly and industry experts estimate that the drug may be on the market as early as July, but definitely sometime in the second half of 2018.
2. Rapastinel
Rapastinel is the name of drug under development by a company called Allergan which is in the middle of phase III studies (should be completed pretty soon). Rapastinel is also a derivative of Ketamine and acts on the same receptors, but it’s function is different from Ketamine and esketamine in that it has no dissociative effects, but phase II studies indicate that it may be more powerful than either Ketamine or Eskatamine. Rapastinel is administered via IV infusion. In phase II studies, patients that received a Rapastinel infusion a significant response within 24 hours and improvement in depression scores that were double the improvement of SSRI responders after 8 weeks of treatment and the benefits from a single infusion lasted between 7 days and 10 week–which is an improvement over ketamine. Interestingly, Rapastinel also appears to be a “smart” drug because appears to improve memory and cognitive functions.
Anyway, I wish you the best and you have plenty of reason to stay hopeful.
Hey Stingray,
I know you “may or may not have Lyme Disease” and you’re waiting on the results, but why assume it’s a wrench thrown into your treatment for depression, Statistically, the chances are very good that you don’t have Lyme Disease, so try not assume a negative result from the blood work. Let’s not jump to any conclusions or assume the worst. Even if you do have Lyme Disease, it can be treated with antibiotics regardless of how advanced the disease may be. It’s not a cure, but it can help to prevent neurological damage and put the disease into remission (it’s a cure when it’s caught early, but still an effective treatment later on). Even though it is highly unlikely that you have LD, it would not be the end of the world.
In the life there are always going to be challenges and you can’t take them all on at once. If you’re in a pit of poisonous snakes, you can’t kill them all at once. The way to escape is to kill the snake that is closest to you…. then you kill the next closest snake and onward until they are all dead. Right now, you are waiting on the test for LD, but that’s not the snake directly in front of you. The depression is your closest snake, so let’s focus on that until you have reason to change priorities. Even if you have to get treatment for LD, that shouldn’t interfere with your treatment for depression (TMS or otherwise). Focus on one thing at a time.
As for the left side/right side TMS thing, if you need additional treatments and your treatments are being covered by insurance, the doctor can request that they cover additional treatments for you beyond the 30 treatments typically approved. It’s too early to worry about this not working since you have a lot of treatments remaining. In the end, you’ll get the number of treatments you need. For now, you just have to focus on trying to get better and killing off those nasty negative thoughts (and that closest snake). Things may suck right now, but they can and will get better.
I agree with stingray, you need to finish off the last seven treatments. It’s pretty common for people in treatment to experience the TMS dip(s). In the course of six weeks, you’re stimulating parts of your brain that are underactive and, in some cases, slow down overactive regions. When you work out at the gym to build up your muscles, you will feel sore and even weaker after a workout—particularly in the beginning. TMS is no different. You may have to take one step back to take three steps forward during the treatment. Once you wake up those sleeping neurons and change their polarity, they are going to form no routes and connections. It takes time for this process to complete itself and you’re not going to feel the full benefit until the process is completed. The amount of time it takes for a brain to repair itself varies from person to person. You just need to stick with the program and don’t give up.
As for the resurgence of feelings of depression and self-harm, make sure your doctors know the situation. You may want to talk to them about ketamine, which can help get you over this hump and put the bad thoughts and feelings in check while you are recovering from the TMS. The ketamine is a terrific short term solution for depression, but it’s most effective in addressing issues of self-harm and suicidal ideation.
You’re not alone in this. There are lots of people out there who feel exactly the way you do right now. That said, understand that depression and depressive thoughts are a form of delusion. Those negative thoughts and feelings that keep looping over and over in your mind are not accurate reflections of yourself and the world around you. If you have a thought frequently enough it becomes a belief and if you hold onto a belief long enough, you consider it a fact. So, you can have some irrational guilt about being a lousy son, daughter, wife, husband, parent, employee etc. You fixate on that guilt as part of a thought feedback loop in your mind, which you keep going over and and over (and adding to the negative thoughts every turn through the loop). Over time, those thoughts and feeling become a native belief that you’re a bad person etc. and with more time, that belief becomes and irrefutable fact (to you at least). In truth that fact/belief/thought is a form of delusion which is part of this disease–no different than a psychic cancer cell. Any treatment you’re getting, CBT, talk therapy, pharmacological treatments, TMS, Ketamine, ECT etc. are intended to give you the strength and ability to terminate this negative thought process and improver your ability function, thereby improving your mood. It doesn’t matter how you get there, but your goal is to get to the point where you can recognize that these thought loops and processes are not real and you have the power and strength to tell those little nasty, irrational thoughts to go fvck themselves (and really mean it).
You probably already understand this intellectually, but actually doing it seems impossible right now. Nevertheless, you can get to that place where you have the strength to push those thoughts away but it doesn’t happen overnight (obviously). The TMS can work and help you get there but it may take a little longer of it to kick in. If you need something right now to help you get over the hump until the TMS kicks in, especially if you’re having thoughts of self-harm, you need to discuss this with your doctor and you might want to discuss ketamine infusions or injections. Ketamine is a great short term treatment for most people and it’s particularly effective in quelling thoughts of suicide and self-harm. Even in cases where ketamine doesn’t do anything to relieve the symptoms of depression in a suicidal patient, 90% respond that ketamine stops suicidal ideation and thoughts of self-harm. My wife is currently getting rTMS treatments (treatment 9 was today) and twice a week during her TMS treatment, she is getting a ketamine infusion. Even though the ketamine doesn’t get her out of her depression by itself, it does give significant relief and she looks forward to receiving the ketamine treatments (particularly when she wasn’t getting them with the TMS. She liked just getting the treatment and relaxing for a couple of hours.).
Hi stingray and others,
You guys aren’t alone by any means. It’s been a few weeks since you started your thread and a week since your last post. I hope you are feeling a little improvement by now, but even if you aren’t, it doesn’t mean the treatments aren’t helping you. There are way too many people in the same position as you, and most of them share your concerns. What happens if TMS doesn’t work for me? Where would that leave me? Will anything ever work for me? Those are common concerns. When you are facing a challenging treatment situation and you’re already depressed and anxious, it’s not unusual for people’s worries and expectations to become unrealistic. The statistics for the successful use of TMS to treat MDD are there. People that responded initially to SSRIs seem to be more successful with treatment than the people with TRD that did not respond to SSRI’s at all. TMS is being used off label to treat general anxiety disorder, bipolar depressive disorders, PTSD, ADHD, autism etc. It isn’t FDA approved for useage in treating these conditions, but studies are under way (and have been for a while). and the results are very promising.
My wife is going down the same road as you and others on this forum and I am with her in the passenger seat, trying to help. She has the same anxiety about going through this treatment and having it not work, regardless of what the statistics say. When you’re depressed and expect the worst in general, it’s not hard to imagine a treatment not working. My wife has had 9 treatments so far, so it’s way too early to tell how it’s going to work overall. Most people don’t see improvements until they are around the 20th treatment and some don’t see improvements until some time after the treatments are finished. Again, this is when you (in your depressed or emerging state see improvement), not when the improvement actually begin.
As with most successful depression treatments, improvements seem to begin with your ability to function—not your mood or outlook. Improvements in function aren’t always noticeable to the person receiving treatment, but they can be noticed by those that know the person well. If you ask my wife right now whether she is benefiting from her treatments, she would probably say no. At the same time, when I point out changes she does acknowledge there have been modest improvements over the first nine treatments. At this point, my wife has a little more energy. She has had some good moments when she has had natural smile and laugh that isn’t forced. We watched a comedy over the weekend and she laughed a couple of times and didn’t complain about how much the movie sucks. She is able to spend more time with the kids and can watch them for a couple of hours before she needs a break. These improvements are small and they are noticeable only relative to how badly she was doing before these treatments began. She is still very depressed and anxious. She still has panic attacks and crying spells, but they seem to be less frequent and last for shorter periods of time (in most cases). Instead of the attacks occurring daily (sometime more than one a day), she just went three days without an attack (but had one last night). I can also reason with her a little when she is in a panic attack, which was impossible to do a few weeks ago. These are material improvements, but nothing miraculous yet.
I think that’s how this is going to go… little, incremental improvements until one day she hits a plateau (which is hopefully at a point of remission). I will note though that, like you, my wife is having an off label version of the treatment. She is having the usual left side high frequency stimulation 5 days a week for six weeks, but twice a week (Mondays and Thursdays) she is also receiving a ketamine infusion during treatment. She also had 6 ketamine treatments alone (no TMS) before she began the TMS portion of treatment. The ketamine was helpful for my wife, but the effects didn’t last long. Combining ketamine with TMS seems to improve the performance of both treatments, but there isn’t a lot of research on this yet–but there have been a few limited clinical studies published with good results.
Martin,
I am not a doctor and it’s not my place to tell you what treatment is best for you. Opinions are like @ssholes, we all have one and half the time they are wrong. I can only share with you my personal experiences with these treatments. Well, not mine exactly, but my wifes. My wife has been struggling with severe MDD (unipolar) most of her adult life. She used to respond to SSRI’s but that stopped about three years ago and now she is treatment resistant to pretty much every drug combo out there. She has tried them all: cymbalta, prozac, lexapro, viibryd, effexor, wellbutrin, abilifiy, trintellix, latuda, lithium, (and many that I am forgetting at the moment). My wife has been through a living hell, to the point where she told me that she is a drag on everyone she loves and that if it wouldn’t devastate the kids and me, she would end it all now.
My wife has been under the care of 7 different p-docs in the past 5 years and six of them sucked @ss!!!. If they were on our insurance policy, they were getting paid $70 a session to treat my wife and if things were more complicated than just writing a script for prozac, they were out of their depth and weren’t going to do the research needed to help my wife. Doctor 6 came highly recommended and didn’t take insurance. We paid him a fortune and he started my wife on a disastrous course pharma combinations that turned my sweet (but sad) wife into an angry person, full of rage with paranoid delusions. I was scared to leave her alone (and never left her alone with the kids for more than 10 minutes at a time). Doctor’ 6’s answer to these issues was to put her on even higher doses of more toxic meds and he strongly recommended having her placed in inpatient care at a p-ward and thought ECT was her only option. He was against Ketamine because for treating depression because it wasn’t FDA approved (and he couldn’t provide it to her anyway, since he didn’t have the skills) and he thought TMS was a waste of time (he also couldn’t offer that, since he didn’t have the machines and would have to refer my wife to another doctor for treatment–thereby costing him a patient that was paying $400 in cash every two weeks (sometimes more often). We ditched doctor 6 in September.
In October, my wife started seeing Dr. 7, who is a neuropsychiatrist (did his residence in Neurology and fellowship in psychiatry). Our experience with Dr. 7 is a 180 degree difference from any other p-doc my wife has seen (or that I have seen for that matter for my own issues). He didn’t just do the usual psych workup that every other p-doc did (you know the one, “how do you feel today on a scale of 1-10, ten being fantastic—-“. I mean, he did ask my wife those questions, but he also talked to my wife for over 2 hours during the first session and she felt he really understood how she ws feeling. He then had my wife take an MRI, EEG, full blood work and he conferenced with my wife’s OB-GYN to rule out any hormonal issues and her primary care physician. He also took her off all of the meds Doc 6 had her on, and replaced it with a low dosages of Viibryd, Welbutrin, Ritalin (to help her get enough energy to get out of bed and focus on her basic needs) and klonopin for anxiety/panic attacks. He put her on these drugs to try to take some of the edge off of her and to reduce the withdrawal effects from some of the drugs she was on. He didn’t even get into ketamine, TMS or anything else with her at this time.
By making these changes, my wife’s rage and anger were gone in a couple of weeks, but the depression and anxiety were still in full force and effect.In December, my wife wasn’t doing well so Doc 7 talked about her iother options. In addition to the usual p-doc services (meds, talk therapy etc.), Doc 7 offers ketamine infusion therapy (since 2011), rTMS (since 2009), dTMS (since 2013), tDCS in his offices and ECT through the hospital. One of his partners is a neurosurgeon that performs surgery to implant the electrodes and equipment used for deep brain stimulation and vega nerve stimulation (both require surgical procedures). In short, his practice offers the latest and greatest services, so he has no economic incentive to push patients towards one treatment as opposed to another–which isn’t the case for many clinics. If you go to Ketamine clinic run by an anesthesiologist,he can only offer KIT and has an economic incentive in promoting it over other treatments like rTMS. If you go to a TMS clinic that doesn’t offer KIT (which is usually the case), they’ll push TMS as the preferable course of treatment. So, when doc 7 gives advice based on his experience with these treatments, it means something to my wife and me because he has no incentive in promoting one over the other.
In January he started my wife on Ketamine infusion therapy and, at the same time, he started the paperwork to get her approved for rTMS from our insurance carrier. He explained to us that Ketamine is a wonderful short term solution, but TMS is more likely to provide my wife with a durable, lasting remission. He also offered us the option to pursue both treatments in a combined therapy protocol his practice has developed. There’s not a lot out there on this, but there are other neuropsych clinics doing research in this area with solid preliminary results. There’s no increase risk facts when compared to TMS or ketamine administered alone, the only issue is whether the combined therapy will result in a better treatment outcome than either TMS or Ketamine alone. We felt it was worth a shot. (He also isn’t charging us more for the combo therapy than the rTMS alone, after we paid for the initial 6 ketamine treatments alone–so, he’s not making more money off of us, but pushing the combination therapy [which is refreshing]).
As of now, my wife had a full course of six ketamine infusions (2 a week for three weeks) without rTMS. The ketamine, by itself was very helpful—but it did not put my wife into remissions. She is still depressed, still has anxiety attacks, still cries a lot—but the intensity and frequency is less. She also has a lot more good moments, when she is actually smiling and laughing. She even sings along with music again. She has also had 5 TMS treatments without Ketamine for the first week of TMS treatments and she just had treatment 9 today (there was a delay after treatment 5 due to an insurance snag, but we’re back on track now).
After 9 TMS treatments (2 combined tms/ketamine), my wife’s mood is still very low and she is still having panic attacks and is getting fixated on her fears and worries (like what will she do if this treatment doesn’t work etc.). If you ask her, she’ll tell you she doesn’t feel better and doesn’t see any change. That’s her perception of things, but mine perspective is different. While I don’t any major improvements in mood, I do see some noticeable improvements in function for her. For example, she doesn’t get as frustrated as easily or as quickly as she normally would. If my daughter spilled juice on the floor a month ago, my wife would have flipped out (three months ago it would have been very serious incident). This morning, my wife got a little annoyed, but said, “honey, you need to be more careful and let’s clean this up. Go get some paper towels…..” That’s a major improvement. While my wife is still having panic attacks, there have only been two significant ones since treatment began (instead of daily). She seems to sleep better–more deeply and it’s easier for her to get up in the morning (relative to how she was before). She also isn’t getting caught up in thought loops (that’s what I call them anyway), when she gets an thought or idea in her head and can’t get it out of mind. She’ll start a thought loop, but I can change the topic or create some distraction and it gets her thoughts “unlocked”. She also laughs at stupid stuff on tv on occasion–which is great and she is singing along to music in the car at times. She is also more willing to consider different ideas. I was trying to convince her to try mindfulness meditation techniques a few months ago and you would have thought I was asking her to cut off her right arm. I mentioned it last night and I downloaded a mindfulness program for her and she actually said she would give it a try.
In short, I am not describing miracles or major events. These are signs of improved function relative to how my wife was functioning in the recent past. Things are not good by any means. She is still emotionally fragile and I would not be surprised if she experiences one or more set backs along the way. People don’t heal in a straight line of constant improvement. It’s all ups and downs that hopeful trend upward as a general pattern over time, like the stock market.
Before you give up on dTMS, think about how your ability to function may have improved in small ways over the past couple of weeks. Ask people who know you and see you regularly if they notice any changes or improvements. Whether you seek treatment with Ketamine, dTMS, rTMS or some other form of therapy, you never going to wake up one day feeling on top of the world with a cheerleaders jumping around your bedroom celebrating the end of your depression. It’s more like watching an analog clock. Stare it for a few minutes and you barely see the time change, but come back after taking a shower and the difference is noticeable.
Hey Martin,
TMS (whether dTMS or rTMS) has a great likelihood of getting a patient into full remission from the symptoms of depression and keeping them in a balanced state for an extended period of time. It usually takes 20 treatments for a patient to start to see improvements in function and mood, but many don’t see improvement until they near the end of their treatment course and (in some cases) they don’t see the effects until a month or two after treatments are completed. In short, I think it’s too early for you to tell whether you are benefiting from TMS and you need to be a little more patient with the process.
As for ketamine, it can be a great short term solution to help get you out of the doldrums and on the path to healing, but the benefits are short term and most people need frequent top offs to sustain the benefit. It’s not a cure for depression and the chance of having a sustained benefit from TMS alone is greater than with Ketamine alone
Depending on your financial situation and access to medical care, you can pursue both TMS and Ketamine at the same time. There are doctors that strongly believe that TMS treatments create pathways that help sustain the benefits for Ketamine for the long term. Here’s a case report by Dr. Steven Best, who is a big proponent of combined rTMS/ketamine therapy: His protocol calls for a patient to receive rTMS and a relatively high dose of Ketamine administered via IV bracketed within the first five and last five minutes of the rTMS treatment (which is administered over 37 minutes). Dr. Best’s proposed protocol provides for the patient to be primed with four TMS treatments administered over two days (no Ketamine). On the third day, the patient receives the combined treatment. After the first week (3 days of treatment), the patient returns for combined therapy once a week for 30 weeks. He has done an open label study of 28 patients that suggests that combined therapy is significantly more effective than TMS or Ketamine administered by themselves.
Dr. Best’s protocol hasn’t been studied by anyone else to my knowledge and it’s certainly not a treatment that has been proven to be effective. My wife is, however, seeing another doctor that uses a different combined therapy protocol, where she gets rTMS treatments 5 days a week for six weeks, with ketamine administered via IM injection during twice a week. It’s too early for her to tell whether this treatment is effective, but our fingers are crossed. I also know of other people that are receiving rTMS treatments and ketamine infusions concurrently, but not administered at the same time or by the same doctor.
Anyway, it’s food for thought and maybe something worth looking into. Good luck!!!
Thanks for the encouragement. Unfortunately, we had a set back this week. After first being told that my wife’s rTMS treatments were covered out-of-network by her carrier, they sent us a denial letter. They want us to use one of the two providers they have in network. One of those providers isn’t taking new patients and the other is a 2 hour commute (each way). We’re fighting the denial, but it’s caused an interruption in treatments. 🙁
Thanks Colleen. I am optimistic about the treatments providing a benefit, my wife’s having a hard time with it all. She was really happy with the ketamine, so switching to TMS (even with the ketamine) isn’t easy for her. I think she’s just anxious about the whole process. Even if TMS doesn’t work, she can always go back to just having ketamine. She just needs to give this a fair chance and not focus so much on the outcome. I am sure it’s easier said than done, but you’re right about there being other options out there if this isn’t as successful as we hope.
