Viewing 12 posts - 1 through 12 (of 12 total)
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  • #33510

    patjrvj
    Participant

    I responded well to the TMS treatment up until they started to taper. I had 3 treatments this week, 3 last week and 4 each the 2 weeks previous. I’m scheduled for only 2 this next week and then one and I’m done. Ever since they started to taper I’ve been sinking. I am now awake after just two hours of sleep, feel like crying, life that looked so full of promise a few weeks ago now appears dark and forbidding. I feel like I am a dislikable disaster. I guess it’s time to start the psychotropic merry-go-round again and the thought of that just makes me want to give up.

    #33514

    Eric99
    Participant

    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

    #33515

    patjrvj
    Participant

    Thanks Eric, I’m not giving up, but I only have 3 more treatments, and the effects aren’t holding. I found out my insurance will pay for a whole other round in 2 months, and I think I may have to consider that. The whole thing is very disheartening. I’ve also just been diagnosed with fibromyalgia and I think the TMS treatments may be triggering that, or at least what I think that is, extreme pain all over my body especially my feet; imagine stepping on sharp tacks every time you take a step. The doctor turned up the volume on my TMS treatments, I think maybe a bit in desperation because up until the taper I was the poster child for TMS. In any case I’ve gotten through 3 treatments at 140% of my threshold, whatever that means, it means it hurts. I am not going to do any more at that level, I’m tough but I think I’m crossing into masochism. I can honestly say TMS gave me a glimpse of what life must be like for people who are not depressed and it is amazing. I even panicked a little after treatment 6 because I woke up and couldn’t feel my heart, the sadness and heaviness I carry was gone. That sounds weird but yesterday I literally felt all that sadness and heaviness returning to my heart. Along with the sadness came waves of shame and humiliation, and I just wanted to quit life and hide. I am not suicidal, I believe in eternity and so there is no escaping this fucking pain. I also am not selfish enough to want to bring pain to those who love and depend on me, but I am sooooo fucking tired of feeling like a mistake. Hang in there with your wife, this is a horrible sickness of the soul, and so beyond our control. I’d be lost without my husband, and even though I’m the one who works outside the home, he’s the one that keeps me and everything around me going. I have so much to be grateful for and I just need to hold on to the fact that I’m dealing with a chronic illness that is going to ebb and flow, and part of the illness is that when it’s bad it hides all the good even if yesterday was wonderful you can’t remember it correctly through the pain of today. Keeping a journal on good days not just bad helps. I hope this is just a dip and things will reset. If not; after a break, I guess I will give it one more round, thanks for the support.

    #33517

    Eric99
    Participant

    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

    #33518

    patjrvj
    Participant

    Hey Eric, The FM diagnosis has been a long term trying to figure out what is going on. I’m not sure the diagnosis is correct either. It seems like my current doctor ruled out a handful of possibilities and then applied this label. The fatigue and pain have stolen my life the last 6 years. I had a major illness that seems to have brought it on, before that I was an endurance athlete. Losing my best antidepressant (excercise) has been difficult. I have just recently heard of Ketamine, on this site only. I’ve tried so many meds, with very limited relief and lots of side effects, it makes me a little leery of trying another. TMS is the first treatment that has given me a glimpse of a not depressed state, so despite slipping backwards I don’t think I’m ready to give up on it, and am trying to mentally prepare myself for another round if needed. I will keep ketamine in mind though if things continue to deteriorate. I’m a little better this afternoon. I took out my Cognitive Behavioral Therapy (CBT) workbook and am working the activities when I get overwhelmed with a negative thought. It’s taking out one hornet out of thousands at a time, but it does give me a needed sense of control. If your wife hasn’t had some CBT therapy or instruction I would recommend it. It’s certainly not a cure, but rather a tool that can give some relief. I found it most effective with calming anxiety. good luck and god bless

    #33522

    patjrvj
    Participant

    I am humbled to report my Dr. is giving me 8 additional treatments. He’s going to ask the insurance to cover it, but regardless he wants me to continue at his cost if necessary. I had my last 3 of the treatment round this week and felt my mind quieting down again after the third one. I also slept the sweetest most peaceful sleep that night. He thinks I need just a few more to reset everything. Also I guess this is part of the process of getting insurance companies to allow doctors to make decisions for their patients, instead of corporate desk jockies. I am feeling very conflicted about accepting this enormous gift, if things stabalize I may have to pay it forward some day for someone else. Right now I just want to get back to not having negative thoughts slice up my heart. If nothing else this treatment has allowed me to truly see what depression is and has given me a glimpse of being without it.

    #33523

    Eric99
    Participant

    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!!!!!!!!

    #33548

    Courty140
    Participant

    Hey patjrvj,

    Just curious how you’re doing now? Are your sessions done? Are you feeling better? I’m just starting my journey. Hope you’re doing well.

    Courty140

    #33551

    patjrvj
    Participant

    Hey Courty, I’ve had 6 of the additional treatments so far and am doing really well. I will have one more treatment next week and one the week after that and then I’ll be done. I am off of all meds, which I started (again) when my depression got real bad late last year and before the TMS began. I stopped the meds the second week of TMS. They made me irritable and disrupted my sleep, it is so good to be done with that. I can honestly say none of the meds have ever gotten rid of the depression just, occasionally, made it more manageable. After my “dip” back down when I began to taper, I came home after my 39th treatment, fell asleep in my recliner and when I woke up my mind was quiet. This happened initially when treatment began, but it was so subtle and gentle (as opposed to when you start a new drug) that I wasn’t sure if it were situational, wishful thinking, or what?, but having come up out of the depression and then seriously dipping down again I was able to recognize right away that TMS had done its thing. I was told that people like me who have battled depression their whole lives often need repeat rounds or maintenance sessions, and that people who hit their first depression late in life are often cured. My insurance will pay for a whole other round, but not maintenance so I may have to put that in my budget. I’ve also been told to continue in therapy and practice extreme self-care. I guess I haven’t been cured of depression, it will probably show its ugly face again, but for the first time in my life I know what it feels like to not be depressed. I’m learning the difference between normal sadness and the life sucking negative thoughts that consume you when depression takes hold. I kept a journal when I began treatment and that helped me to see the progress in the beginning. The funny thing is that as the depression lifted I became less interested in writing, less self engrossed, less self-reflective, and more involved in living my life. Good luck in your own journey I hope you respond as well as I have.

    • This reply was modified 2 months ago by  patjrvj.
    #33553

    Courty140
    Participant

    So glad to hear that! Thank you for your response. I just had number 6 yesterday… I’m doing 3 per week as I work full time… and already this weekend is better than last weekend. I have my ups and downs, but I feel like I have a little more peace and am not quite as anxious or sad. I reaaaally hope it continues! I’ve read about “the dip” and that has me a little nervous, but if it can get me to a place where I feel lots better… I’ll take it! Any other wisdom you have to share is greatly appreciated!

    #33557

    badhealther
    Participant

    TMS made my depression so severe it’s 2 years later and i’m sick. I had to go onto disability and suffer everyday pain and sickness i never had before. It’s a freakin Dangerous procedure. There messing with your brain with powerful magnets. There is no reversal if you get worse. It stays that way. I’m just waring you. This treatment is dangerous. I’ve never recovered and have lost everything spent thousands on Doctors since TMS.

    #33560

    colleencasey
    Participant

    Badhealther:

    Sorry to hear that TMS did not work for you and that you are dealing with the challenges you identify. I hope you find a treatment that is effective for you.

    I did have NeuroStar TMS Treatment and it did work for me and has changed my life in a positive way.

    There are a few questions that I wonder about with your treatment because there is no clinical evidence that these treatments make depression worse. It is sad that this treatment is not effective for everyone. That is the case for most medical treatments – they work for some but not all.

    Did your doctor inform you that this is a treatment that does not work for everyone?

    What type of machine was used to administer your treatments, as contact at the treatment site is critical to administer the correct dose (that should have been determined ahead of time)? Contact percentage varies from machine to machine.

    There is constant brain research being conducted world-wide. There are new treatments being developed on a continuum that are bringing hope and relief to more and more of us who are dealing with the challenges of MDD.

    Sending hopeful thoughts for recovery.

    Colleen

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