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  • #5201

    rebtar
    Participant

    I’m in the third week of treatment and my mood has “dipped” over the past week or so, and today I’m feeling so down I just want to cry my eyes out. I know it can get better and I’m committed to sticking it out but I need some words of encouragement. I’m still hopeful but also feeling doomed to suffering for the rest of my life. I’m sure many if not all of you can relate.

    Also, if anyone has experience with morning worsening of depression/anxiety that makes it so hard to get up and get going — have you found anything that helps? My PDoc says that as my depression lifts, this will get better, I certainly hope so.

    Lastly, I’m being treated on the MagVenture machine — has anyone had experience with this machine?

    My solidarity and understanding to all of you who have gone through or are going through this.

    #5202

    colleencasey
    Participant

    Hi rebtar:
    Depression is so difficult and challenging to deal with. And sometimes the treatment can add to those challenges, which is characteristic of the dip, that you may be experiencing.
    First let me commend you on your determination to “stick it out” as treatment outcomes sometimes can not be determined until treatment is complete. Hence the importance of not ending treatment prematurely if that is what your doctor is advising.
    The dip is a phenomena that occurs during treatment for some patients. It is a “dip” in mood so to speak, what feels like a worsening of depression. Sometimes it can feel worse than the depression you are being treated for. The good news is that it is temporary. It can be quite difficult to tolerate and endure, However, it is a small price to pay if TMS works for you. I cried, wanted to quit treatment, was confused and unsure of almost anything during that time. Hold on, you will make it through.
    TMS is a medical treatment and needs to be viewed as such so have some patience (I know it can be hard), and compassion for yourself and your process. Stay connected with your Doctor and TMS Coordinator on a regular basis. Stay in touch with your support systems and communicate your experiences whenever you need to.
    I have no experience with MagVenture, I was treated with the Neurostar System.
    I am sending support. Please stay connected with this site too for info and the support you need. I am praying for you.
    Colleen

    #5203

    rebtar
    Participant

    Thanks for responding Colleen and for the support. My mood seems to have lifted a bit over the past two days. The hardest part for me is morning anxiety which in itself is very hard but also pulls my mood down. I’ve started confronting it head on, so to speak, getting right out of bed, exercising through it, even while I want to cringe and cry (and sometimes do). Instead of just staying in bed suffering. Breaking with the helpless feelings is big.

    My treatment just got bumped from 3000 to 5000 pulses per session. I’m starting to look forward to the sessions, the discomfort is gone and I almost find them pleasurable. I do positive visualizations during treatment to help things along in “re-wiring” my brain towards the positive. At yesterday’s session I almost dozed off…

    I’m grateful for this forum, it helps to feel connected to a community of people who understand. I read your post about your success with TMS, I’m happy for you and wish you continued wellness. Rebecca

    #5204

    colleencasey
    Participant

    Rebecca:
    It is so good to hear that your mood has lifted some. I am not familiar at all with the set up of the MagVenture machine or technology. Are you receiving bilateral treatments by any chance? I know with Neurostar, I have treatment on the left side of my brain for depression and on the right side for anxiety and adhd (right side treatment is off label so far). Anxiety is being treated on the right side of the brain with a great deal (not perfect) of success. It might be worth asking about if your TMS treatments are not addressing this.
    You seem quite persistent! I think, as you are a perfect example, depression is a disease that needs a multifaceted, eclectic approach – professional treatment, exercise, determination, good nutrition, supports systems in place, etc. Keep doing what you are doing – hitting it head on. As always, stay connected to your professional team of doctors, TMS coordinator, etc. You deserve much respect and admiration for the journey you have chosen in confronting this challenge.
    Research on brain functioning is at an all time high so hope is on the horizon for so many more who suffer.
    Sending positive thoughts and prayers! Thanks for your kind thoughts and wishes.
    Colleen

    #5205

    rebtar
    Participant

    No, just unilateral left side treatments. The doc says that as the depression lifts, the anxiety should improve as well. He doesn’t think there’s much scientific support for the left side depression/right anxiety approach. However if the anxiety doesn’t improve I may ask him to do a series on the right side to see if it helps.
    My lifeline has been hiking almost every day for 1 1/2 hours over pretty challenging trails, good nutrition (gluten/sugar/caffeine free, lots of organic vegetables and high quality meats), and I’m in the process of widening my circle of active friendships that shrank enormously over the past 15 years that I’ve been depressed to one degree or another.
    I also practice DNRS, Dynamic Neural Retraining System — you can look it up on the web. It’s a system for “rewiring” the limbic system away from an overactive flight or flight response. So yes, multifaceted…
    Today was another good day — some anxiety in the morning, but much better in the afternoon and evening. I know I’m better because I’m saying hello to people I run into when hiking instead of keeping my head down…
    Wishing you good cheer for the holidays and a healthful and happy 2016!

    #5206

    colleencasey
    Participant

    Rebecca:
    Wow – Sending wishes for continued improvement. Your story is inspirational. Keep us updated as your sharing is hopefully a positive experience for you and will be for others.
    I wonder if you journal at all. Your day to day experience with TMS may be ever changing and it might be a historic, interesting compilation of what it was like for you. Just a thought.
    Happy New Year!
    Colleen

    #5211

    rebtar
    Participant

    Colleen — I’m still up and down and, well, having a bad day.

    I’m wondering what you know about re-calibration. After a stretch of days where my progress “stalled” as my doc put it, he increased my pulses from 3000 to 5000 and then after a re-calibration, increased the intensity of the pulses as well. The re-calibration seemed anomalous to me — it was kind of all over the map, high and low, and after while a while settled at a high level. I don’t feel confident that my protocol is correct, and I mentioned it to the doc but he seemed confident it was as it should be although it was “unusual”. I wanted a new calibration but he said that wasn’t in the program. I see him again Tuesday, and will try to convince him that I want to re-calibrate.

    I guess I just need support today — It’s so hard to feel better one day and worse the next. I so want to just feel better and be through this.

    Wishing you a happy and healthy new year. Rebecca

    #5212

    colleencasey
    Participant

    Hi Rebecca:
    I always remind myself I am not a doctor when I address such issues as re-calibration and that I speak from patient experience only. I did have a re-calibration after two weeks of treatment and yes there was a change in intensity and placement of the coils. The reasons however for consideration for you may be very different than the reasons I had the re-calibration. TMS, although has similarities among all patients, also has individual variables under consideration when doctors are making treatment decisions.
    The issue I would be looking at first is how experienced (how many years administering TMS does your doctor have, how many patients has she/he administered TMS to, (if its only a few do they outsource for guidance and information), are you confident in her/his presentation of information and reasoning for the decisions she/he is making for your treatment and is she/he open to discussing your view point and sharing information that supports the decision(s) being made?
    The next point is not so clear. I would say it is a matter of weighing what your gut is directing you to do with an understanding that there are unknowns about treatment outcomes up until and even after treatment ends. It is scary no doubt (and for me it was a mind roller coaster ride until after treatment ended), not to see results that you may have predefined; but each of us has different brain chemistry so outcomes, response time frames, just do not have definitives. I will say that I stayed very connected to my doctor and treatment team, asked as many questions as I needed to and eventually put trust in my doctor’s belief as I had very little of my own throughout treatment.
    I am obsessed with research, but at one point I had to accept I just didn’t know what was going to happen nor did I really have any more than a basic understanding of TMS partially because of my depression. Our depression many times guides our emotional decisions at the forefront and leaves the intellectual component kind of lingering behind. Your doctor has the scientific data that guides her/his decisions, in addition to the resources made available to the doctors administering this new treatment.
    It can be a confusing process at times but my guess is most medical procedures have some form of the unknown and/or confusion along the pathway.
    Hope this helps. Thanks for staying connected to get the support you need. It can make a difference. Keep us updated.
    Happy New Year Rebecca!
    Colleen

    #5213

    rebtar
    Participant

    Thanks Colleen, that is helpful. In the morning when I’m most depressed, I can only see negative outcomes. I’m feeling better this afternoon and will follow up with the doc when I see him on Tuesday. I stopped doing research for the most part as I don’t really have the energy and also I found that frequently I came up with contradictory information that was even more frustrating and anxiety producing. I do think another re-calibration is in order because my motor threshold was bouncing all over the place, and ended up coming out very high (the doc said he rarely saw it that high), so I just don’t feel confident with that result. I will insist on that even if I have to pay out of pocket for the additional calibration session. I appreciate the connection so much — this morning I knew I just had to reach out and there was a place to do it. Such a gift.
    Happy New Year to you too, may your year be full of health and happiness. Rebecca

    #5214

    colleencasey
    Participant

    Thanks for your kind wishes Rebecca!
    Just wanted to touch base as the weekend approaches because it sometimes can be a bit more challenging. I felt a bit abandoned over the weekend once I started treatment because I had support five days a week for consecutive weeks. So just a connect to let you know you are being thought of.
    Sending positive vibes!
    Colleen

    #5215

    rebtar
    Participant

    Yes, two weeks have been only three treatments per week, because of the holidays. Thanks for the support, Colleen. I’m heading out for a hike which is what keeps me afloat. Rebecca

    #5216

    colleencasey
    Participant

    Amazing TMS Story of Success – This brings hope and encouragement.

    Colleen

    • This reply was modified 1 year, 9 months ago by  colleencasey.
    #5218

    rebtar
    Participant

    Thanks! Today was a good day…

    #5219

    colleencasey
    Participant

    Great to hear Rebecca. Here’s to another! Will be thinking of you today.
    Colleen

    #5249

    bobbypec
    Participant

    Hi I too am in my third week and haven’t had much improvement. I also have terrible morning anxiety. We just have to hang in. Many people don’t experience any relief until the very end. Bobby

    #5250

    rebtar
    Participant

    Hi Bobbypec,

    I’m almost at the end of treatment now. My doc has ordered “tapering” at the end so I have three more weeks, three treatments the first week, then two, then one.

    My experience is that it has definitely helped. I’m not feeling 100% but able to get back to my life and cope with the day to day. Some days are pretty good. I still have morning anxiety and am medicating for that but hoping to titrate down on the meds pretty soon. In a sense, it’s now on me to continue to improve by continuing therapy, and working on the issues that contributed to my depression. I’m grateful to TMS for having giving me a lift out of the dark place, to continue this work for regaining my balance and health.

    It’s hard to be where you’re at right now. The hopelessness of depression makes it so hard to see that the light at the end of tunnel may be coming. TMS has helped many people and it may certainly help you as well, patience and hanging in there is all that’s needed. I send you encouragement and support, getting better is possible.

    Wishing you the best of outcomes and that relief comes soon.
    Rebecca

    #5254

    colleencasey
    Participant

    You are on point bobbypec. The initial outcome after treatment was not the end result of treatment for me. I continued to improve for nine months. Very interesting that the brain is still working on developing improved efficiency long after treatment ends. Patience sometimes is in short supply when feelings are so dark, but when the darkness lifts, life is different, very different. As others’ stories indicate, there is reason for hope.
    Improvement may be just a breathe away for you. Sending good wishes for an effective outcome.
    Colleen

    • This reply was modified 1 year, 8 months ago by  colleencasey.
    #5256

    bobbypec
    Participant

    Thank you Collen you have given me some hope. I really appreciate you writing. I’m so sad. Bobby

    #5257

    colleencasey
    Participant

    Bobby: I hear your sadness and recall those days. Just know that your duration in treatment to date means little in terms of the outcome of TMS. You need more time and treatments. Many do not experience the lift or the light early on because the brain needs time to work in those changes such that it affects mood. Keep your eyes open for the little changes, as those appear first!

    #5267

    Martha
    Participant

    The YouTube was great,so encouraging,a smile maker. How is everyone doing?

    #5270

    bobbypec
    Participant

    Hi I’m on treatment 17 and started to feel a little better. I also started Pritiq with no side effects. Bobby

    #5272

    Martha
    Participant

    Good to hear Bobby that you are feeling better and Pritiq is working. Best of luck,keep us updated. Martha

    #5273

    colleencasey
    Participant

    Bobby: Thanks for the update. Good news indeed. Sending positive thoughts for continued progress!
    Keep in touch. Colleen

    #5299

    Martha
    Participant

    Help !!! The Dr. I was going to go to in Al. didn’t bother to tell me the TMS machine is broken and was broken when I went for my consultation,so wasted time and wasted trip. Next I went to a TMS Dr. in Tn. and they didn’t bother to tell me they are booked up for 6 weeks,did the consultant, did not mention been booked up ,no room for me anytime soon,so no TMS for 6 weeks and I NEED IT NOW. I am so depressed,crying,etc. Does this happen to everyone ??. Your thoughts please Thanks Martha

    #5300

    colleencasey
    Participant

    Martha:
    There is always a solution so take a deep breath and let’s see what the possibilities are.
    Neuronetics has a doctor locator on their site. If you type in neurostar.com on the right side on the top of the initial page you will see a physician locator. Type in your zip code to see locations for providers offering TMS.
    Here is the number to customer service at Neuronetics – 1-877-600-7555. Call them and explain your situation and ask for guidance, help and direction in locating a treatment center. Here is the link to the customer service contact page where you can send a message about your situation – make sure you communicate your needs. https://neurostar.com/contact-us/
    Martha, try these connections, be persistent and keep connected. There are always options. If you need additional ideas for resources, get back on this site and ask! Please keep us posted.
    Sending my best
    Colleen

    #5301

    Martha
    Participant

    Just got told today my insurance will not pay because I’ve not been on enough drugs for the last 30 years for depression. I hate insurance people !!! I bet their just waiting for all us depressed to disappear and stop calling them.

    #5302

    Dave_Wigfield
    Participant

    Hi Martha:

    So Sorry to hear about these issues with getting access to TMS. Colleen is right about checking out the patient locator on the neurostar site, and there is a doctor locator on this page (http://tmsyou.com/directory), but I think not all doctors are on this one. Depending on where you live, there may be a couple options for TMS doctors

    As for insurance, there can be a lot of variation in coverage and that can be very frustrating. If TMS is not covered by your insurance you have two big options.

    1. Neurostar has a patient resource where they can help work with you to get your insurance to cover the treatment in your specific instance. The website for that is here (https://neurostar.com/hcp/reimbursement-support/neurostar-reimbursement-services/) or you can call them directly at 1-877-622-2867

    2. Your doctor may be able to work with you to directly appeal your health insurance to cover the cost. This route has helped patients in the past and may work for you, but you’ll have to work closely with your doctor.

    #5370

    Buddy
    Participant

    I don’t know how helpful this is, but I have experienced the dip too. For me though, the progress seems to come in fits and starts. After the first day, I noticed my vision was different (brighter, clearer, more vivid) and my hearing was a lil different. That progress held for a week, then the next week I didn’t notice anything. But then Friday of that week, I woke up, and I felt “different” again.

    So for me, it’s been 10 days (today)….the progress I noticed, just “happened” on two separate mornings, Day 2 and 10 (so, after the first treatment, and the 9th). In the middle, I did notice a dip, sort of like many people are describing. My place uses a Neurostar machine, which is supposed to be pretty good. I have no idea if that has anything to do with it.

    However, I would try to keep it positive. Just by coincidence, I asked the doctor today about my progress being in fits and starts, and she said everyone is different. Some people will be like me, some people will progress slow and sure, some won’t notice anything until week 5.

    If it helps at all…think about what it happening. They are sending an electrical pulse, to stimulate a specific part of the brain. The electrical part doesn’t fail. Did they do the mapping with the finger movements? If so, you saw that the electricity is going through to the brain. The area is unlikely not to respond to the stimulation. However, the mapping can be “off”, or the stimulation pattern/strength just not right for you. Which they can adjust. Just be patient, and talk to your practitioner.

    Medicines need uptake. If you lack certain enzymes genetically, you can’t process them well…hence a lot of people don’t respond well to many. I had some testing done to see what meds I can theoretically metabolize well/poorly, and I had a ton of meds, that I supposedly can’t metabolize. It’s anecdotal, but most of those meds, true to the report, didn’t work for me. Electricity, works on everyone, no one is immune to it. If you think your immune to electricity, you are wrong. It’s how many of your body’s functions are carried out. If you were immune to electricity, you would also be dead. So, that is probably not the case.

    Your body is going to receive the stimulation. If you are still concerned by week 5, maybe start asking the serious questions. But my progress has been seemingly random, and I’ve also noticed the “fading” feeling. Like I’ve noticed in quite a few posts on this site, it also caused me some concern. Before this treatment, I was in a bad way. About as bad as it gets. So, I understand how much hope we put into this therapy. A lot of us feel like this is our last shot, I know I did. When we are feeling like that, it’s so easy to analyze every hour of everyday…because we are afraid it may not be working. And I totally get that.

    But if you read what I posted above about how it works (it’s a very basic explanation) you’ll see that the likelihood that this treatment will be a total failure for you is low. Some adjustments may be needed, but unless you are immune to electricity (ergo – dead) I would not adopt the view that it doesn’t work for you…or that it will never work for you. Your treatment time, level etc will probably just be different than other people.

    Try not to worry, talk to your doc about any concerns and they may make adjustments. One thing I noticed as well, is that just doing the treatments every day takes a toll on me. Getting up, driving there, doing it, driving back. I feel mentally/emotionally better, but absolutely wiped out. That part of it will go away once treatment is over, and I’ve read from other people that it wasn’t until treatment was over, that they started to feel it, possibly because the stress of actually doing the treatment was gone. So many factors involved that you can’t really know anything for certain right now. Hope this helps a little.

    #5371

    colleencasey
    Participant

    Buddy:
    You have provided needed support and information. Thanks for sharing. Keep us posted on how you progress through your treatments. This is very helpful. Sending positive thoughts for a continued positive response.
    Colleen

    #5372

    Keep_Hoping
    Participant

    How is everyone doing? I assume by now that all of you are done with treatments. I finished my 4th week today and still feel so depressed.

    #5373

    colleencasey
    Participant

    Keep_Hoping: What is your doctor or treatment team saying about how you are feeling after 4 weeks of treatment?

    #5374

    bobbypec
    Participant

    Hello all. I’ve had Nuero Star treatments twice in last 6 years,26 each time. The first time I went into remission. The second time I didn’t but felt a lot better about a month later. I just now finished 40 Deep TMS treatments and gone into remission at about 35 treatments. However my cognition was greatly improved after about 15 sessions with a slight decrease in depression. Keep in mind sometimes you begin to get better after the treatments are over. I had a great Docter at Mt. Sinai. Hope this helps someone. Feel free to contact me. Bobby 917 480 1737.

    #5375

    Keep_Hoping
    Participant

    Colleen,

    They are saying that I may not feel any better until after treatments are done. One of them told me I may not be seeing results but people around me may notice changes. Great, so I feel better but don’t know it?

    I get more discouraged after finishing each week and still not seeing the slightest improvement. Tomorrow I start week 5. During the last session of week 4 cried the entire time thinking this has been a big, painful waste of my time.

    #5376

    rebtar
    Participant

    I get how hard it is for you. I was there several months ago, with suicidal thoughts for the first time in my life. I finished my treatment in January and can say that I now am much better — combining the treatment with an adjustment of meds, psychotherapy and a lot of exercise has given me a gradual improvement to where today I am feeling fairly good, definitely in remission from depression and back to facing the challenges of daily life. But it’s been gradual — no big flashy changes. Don’t give up, get all the support you can — friends, family, medical providers, wherever you can — and hang in there. Improvement may be closer than you think. Sending warm thoughts and wishes. Rebecca

    #5377

    colleencasey
    Participant

    Keep_Hoping: rebtar has some wise words about not experiencing improvement until after treatment ends. And an eclectic approach to dealing with depression is spot on! I also did not experience improvement till after treatment ended even though my TMS Coordinator did and verbalized that to my doctor. I got so angry saying to my doctor, “I don’t notice any change. Why don’t you believe me!, instead of the Coordinator. The depression is in my body!” Whoaaa, I was not happy. So yes, it can and does happen that others may see the changes first. There is no doubt that this medical treatment is a challenge and most often to the depths that we never could have anticipated. You are doing the right thing by talking with your doctor, continuing treatment and reaching out to this site and possibly others. Keep doing what you are doing. The unknown outcome can be tough to deal with. It may not feel it but your efforts are definitely on the right road. Keep connected. Your journey is important not only to you but to others as they may have the same struggles and will gain strength from your posts. I know I have. Sending positive thoughts!

    #5380

    Keep_Hoping
    Participant

    I’m finishing week 5 tomorrow and feel more depressed each passing week with no results. I feel guilty for being a terrible mother. I never have energy to do all the things I’d like to do with my kids. I feel like a waste of a human life. What’s the point of being alive if I can’t do anything but cry?

    Does it really matter if I finish this final week? Then there’s still the 3 weeks to taper. This is yet another let down and loss of hope after trying SO MANY things to get some relief from this never ending nightmare of constant suffering. It’s been over 10 years. How much can one person suffer????

    #5383

    colleencasey
    Participant

    Keep_Hoping – Those feelings of guilt and unworthiness are so difficult aren’t they? And when your heart is saying “I want to do this but your body and the lethargy won’t let you,” it is discouraging and heart wrenching. I am sending compassion for your struggle. We don’t know all of the medical details and inner workings of our brain in response to TMS treatments, but I just had an unusual experience (for me) with TMS that may help give some hope to keep fighting through your treatments and tapers. I never experienced the upswing or lift from depression during my initial treatments 5 years ago until after treatments were over. Since then, every year in late spring I need three booster treatments and it (in my language) pops me back to my new normal of not being depressed. However this year I needed my treatments in March because of a reaction to anesthesia. Anesthesia is a depressant and it had that affect on me. I went for my three booster treatments which usually “pops” me back before I am out of the chair after the first treatment. But this year, it took over two weeks to pop me back. I was terrified that TMS stopped working for me and went on that mental journey. It was horrible, but throughout, my doctor maintained his belief that I just needed time. And he was right. There are so many variables that play apart in this journey through TMS that we must stay connected with our doctors and treatment teams so they can keep us grounded when we struggle. Sometimes there are no words to describe the challenge, pain and discouragement. It can be all-consuming. You are so close to the end of treatment, don’t give up now. If you do, you will never know if you are one of those patients that don’t see a positive outcome until after treatment ends. And you deserve that chance.

    • This reply was modified 1 year, 5 months ago by  colleencasey.
    #5390

    erinb
    Participant

    Coleen is spot on!!@!

    #5396

    Buddy
    Participant

    Keep Hoping,

    This is something you can do, perhaps to alleviate some anxiety. Do you have any people you are close to…that you see fairly often? Family members, boy/girlfriend, kids, pets even?

    I have suffered from depression for about 12 years now. It was tolerable at first, but I developed epilepsy about 5 years ago. To keep it under control, I have to be on meds that do not agree with me at all. They make me tired (I have CFS to begin with) nauseous, massive brain fog…they also make me depressed. Which is ironic because they double as mood stabilizers for BPD patients (I’m not BPD). So, for the last 5 years or so, the depression has been very bad. I can see why BPD people don’t take their meds. I hate them. If I had the added benefit of feeling really good periodically, I would be tempted to skip them as well.

    Anyway, I learned from a Dr. a while back that sometimes, I need to check with my wife to see if she thinks a med (or in this case, treatment) is working. Because often times, we are showing improvement…but because everything we see, hear, and think about…is being passed through this “veil” of depression. Nothing is fully clear to a depressed person. And the thoughts we have, that we think are correct, often times are not. It’s not our fault…but it’s something we need to factor in. How much of this is possibly just the result of my depressed mind.

    Therefore, if you have someone else around you can ask, they will probably notice things much faster than you. I’ve been depending on my wife for this for years now. And, she has been right every time. Because I am so hard on myself (I used to be dynamic, joyful, strong, now that I’m not, I get down on myself) I often don’t see any progress that is made. Because i’m living in a vacuum called depression. My wife, who is not, notices MANY things, that I don’t…until she points them out.

    If you have anyone like that, it would be beneficial. Not just for TMS, but the rest of your life…it’s a good thing to know.

    The other point I wanted to touch on, which I sort of started in an earlier post, is how TMS works….but I didn’t really give you the end of it…

    How exactly does TMS work? The precise answer is, “We aren’t sure” lol. We know the mechanics, we know what tends to happen. But there are so many little in-between steps that even experts don’t fully understand. So, I noticed a change when I woke up the second day (meaning, after treatment one, right before treatment 2) then day 7, and then 16, and 20. I still have two more weeks left.

    So, I noticed a difference, immediately, and then about every week I notice a leap forward. Now, if I were in your shoes, I would probably also find this discouraging. “Why is he making weekly progress, and I don’t see anything?”

    The first answer to that is what I said above. Right now, you may be incapable of noticing small, yet meaningful changes. Someone close to you will probably catch them. I don’t want to dwell on this part, but some things to look for (even in minor amounts) : Bathing/shaving more often, looking more presentable, talking more, more eye contact, able to stay on topic in a conversation, appetite changes (up or down), sleep changes, any changes at all in your daily activities. If a person is totally alone, their best option is to keep a journal of everything they did that day. It doesn’t have to be extensive. It can just be Y/N or short answer, like this

    What time did I wake/get up?
    What time did I go to sleep?
    Did I eat breakfast?
    Did I eat lunch?
    Did I eat dinner?
    Did I make any important choices/decisions?
    How many “things” did I get done? (Our mental “list” of things to do)
    At any point today, even momentarily, did I stop thinking about depression?

    But you really can’t be a good judge of yourself right now. I’ve seen it so many times. And I’ve lived it a couple. And when we are in this state, we are not reliable judges of ourselves. So empirical data is needed, or outside opinion.

    What is probably concerning you most is actually the result of a terrible habit for all of us. I am no exception. I do it constantly. I’ve had to see a therapist for a few years bc I needed to relearn how to think about myself (I’m sick, on top of the depression) and at the root of much of my angst, was comparing. Comparing ourselves to others. I’ve done very well, very quickly. Your path seems slower, so your fear/anxiety kicks in. Fear that this is never going to end, fear that you will never be capable of being a good mom, fear that you are powerless, or that the only way out, is something you don’t want to do.

    As a fellow person who has been extremely suicidal many times, I understand that feeling. And I would never lie to a person like that. You have dealt with enough. So, please believe me when I tell you that you cannot judge your own progress right now. It seems like the treatment hasn’t made any remarkable difference yet, so you are still having the same thought patterns. Self doubt, guilt, judging, comparing, anxiety about the future. When I read your posts, I can see all those patterns. I highly reccomend therapy if you haven’t tried it already and it’s within your means. Until I saw a therapist, I was totally unaware of many of the things I did, or patterns of behavior/thinking. Whether TMS is your savior or not…find someone you feel comfortable talking to, and just talk. Your depression may be chemical, your behaviors (for the most part) are learned, and practiced. Your thoughts, are learned and practiced. Unknowingly, every single day, we reinforce certain thoughts and behaviors. You’ve probably seen it on TV…the “buzz” words. For instance, almost every spring you will hear ALL the news outlets, mention, “Record Breaking Allergy Season.” Every year that passes, there are more allergens in the air…that’s all it is. It’s a record breaking allergy season because that’s the environmental phenomenon. Every year will be record breaking. But saying things like “Allergageddon” or whatever the buzz words will be in a couple weeks, is just a way of tying news coverage together in your head, it makes the issue seem larger than it actually is…it’s a deliberate reinforcing of a message or theory.

    Depressed people are doing that in their head every day. Our buzz words? Worthless, nothing, pathetic, lonely, weak, unreliable etc. Every single day, your brain is bombarding you with thoughts like those, partially or totally bc of the depression, but when we do that, we are wiring our head to think that way. Just like everyone will soon be saying “Sneez-a-pocalypse” or whatever stupid word they choose, your brain catches the word “worthless” and off it goes. The TMS final results may change you clinically, but those thought patterns, by this point in our lives, have rutted themselves a comfy little groove. We can think of all the reasons we are worthless…all day long. But how quickly can we think of the reasons we have worth? For most of us, it’s not very rapid. The reason? We haven’t been taught that line of thinking (either from childhood or later on) and we definitely haven’t been practicing it. Try it (everyone is invited lol) How fast could you come up with 10 reasons you are worthless? How fast could you come up with 10 reasons you are valuable? I bet when you come up with the latter there is hesitation, and a “shrug” tone to how you said it. Like, “Maybe I’m valuable as a spouse?”That time difference, is not reflex, or cognition problems…it’s practice. We aren’t thinking about why we are valuable.

    I’ve gone off on a bit of a tangent. I type too much sometimes, and I get up and down during it…so I sometimes get off track. But about your timing and progress. I know of people who did not even START to notice a difference, until the taper. I’ve heard of people (from the person who does my TMS) that didn’t notice anything until a month after the whole thing was done! Just all of a sudden, it caught up with them. No one’s progress here is relevant to yours. And even if that amount of time passes, and no one else notices a difference in you, and you don’t notice one in yourself, there is always more to do. Some people respond better when the treatment is administered on the right side of the head. They don’t know why. If you, or no one else, have noticed any difference at all by now, that may be something to talk to the Dr. about. Some places will switch sides for ya.

    Even if that doesn’t work, there seems to me a difference in what machine is being used. Some people respond to the Neurostar (the one I’m using) some people respond to other mfrs. However, in reading about this phenomenon (I’m a “numbers” guy) I have never seen mentioned yet, that the results may have had nothing to do with the machine change, it may have been solely caused by the fact that a second treatment was administered.

    So switching sides of the head, switching machines, or just continuing are all things that are (w/o knowing your situation) are all future possibilities. You aren’t “done” yet. And other people have responded like you, only to blast off on week 6.

    My point is – You have one (or more lol) main responsibility right now. Just keep doing the treatments. Have someone else monitor you for changes. Talk to your Dr. about the right side possibility. And try to continue to think positively.

    At this point in time, I’ve talked to and read about enough people to know that you may be healing at just the right pace your body needs. Comparing it to others progress rates, or other negative thoughts (I know it’s hard not to think them) is just doing yourself a disservice at this time. You are putting yourself through a whole scenario that has not, and may not ever, occur. You are enduring the mental pain, anxiety, frustration, guilt, confusion as if it was happening….but the situation, hasn’t actually happened. So, why are we making ourselves suffer through it? We will suffer through it if/when it actually happens. I think it was a famous writer/poet (Twain?) who said (summary) “The worst things in my life, never even happened.” He put himself through a lot of angst, over a reality that was never even realized!

    Try to take this time as your own. Worry about things as they actually come. And in your timeline right now, dismissing this as a failure (that’s what you are fundamentally worrying about right?) is not only pessimistic, and unhealthy….but you are putting yourself through the hells of the “what if’s” that constantly plague us. “What if” it doesn’t work? Worry about that when you know…right now, you are just making your life harder by putting yourself through the what-ifs. You have plenty of time. I understand the concern, and the compulsion to worry about it. But you have close to a couple months before you know if it had an effect or not, and hopefully other options to try from there (unless you decide to try them now). The war is not lost. The battle isn’t even lost, and just by being here and posting, I can see that you are still on the horse! From an outside perspective, it appears as though the battle is simply not going how you imagined. I think it’s safe to say that very few people here were accurate with there predictions about exactly how this battle would go. That happens to all of us. Just keep fighting.

    Viva la revolucion.

    • This reply was modified 1 year, 5 months ago by  Buddy.
    #5399

    Keep_Hoping
    Participant

    Colleen and Buddy,

    Thank you for all the input. As I read your posts I feel so much better knowing that you both truly know the depths of depression. I start my tapering on Monday the 9th and am still waiting for some improvement.

    I started seeing a counselor the same week I started TMS. They are all telling me the same things about having a gradual, delayed effect. I had no idea this was possible when I started. I assumed there was gradual, weekly progress. So my expectations have added to my disappointment. All of these variables should be explained to patients before starting treatment.

    I told the counselor that the main thing on my mind is the depression. I think about how bad I feel, how to get rid of it, will it ever go away, and on and on. I’m putting more hope in changing my negative thinking, reducing my worry and all of those things Buddy said about old thought patterns being like ruts in our brain, etc.

    #5402

    Buddy
    Participant

    Keep-hoping,

    What you are describing is the comparing phenomenon…I think you see that now.

    If it helps at all, my progress has all been in bursts. But I describe it that way, because I don’t notice anything for a while, and then one day I wake up and notice that I feel differently.

    But the fact that I’m describing it that way may be misleading to you. I didn’t wake up after the first treatment and feel cured. I felt “different.” My vision was different, my hearing, music etc. It was a noticeable change, but that type of change only happened once. I didn’t seem as anxious, but I’m really not sure. I noticed I wasn’t thinking about dying that day….

    After the 7th treatment, I noticed I felt a little happier. But “happier” (I’m realizing this as I think about it) doesn’t mean the same thing to me as it may to you. You may imagine I was smiling and full of joy. No, I just noticed that things that bothered me before, I wasn’t thinking about as much (the fact that I can’t work, how much I hate these seizure pills etc) So, it’s an increase in my overall level of happiness, and from where I was, it feels dramatic, even though it’s incremental.

    After #16 my wife said I started talking a bit more, after #20 (I think) I myself realized I was looking people in the eye more.

    The point is, if I compare my progress with some other people, I could get discouraged. I’m almost done…there are many people who are outpacing me with progress with TMS. But that has nothing to do with me. It’s not really any different than if I tell you Wellbutrin XL 300mg a day was a life saver for me, almost immediately (I can’t take it now bc of the epilepsy). Assuming it works for you, it’s unreasonable to expect that you would respond just as quickly. Your brain has it’s own stuff going on, it works at it’s own pace…not the pace of other people.

    Like I mentioned, you are worrying yourself into a lather, over something that hasn’t even happened yet, and very well may never happen. Why punish yourself like that? I’m sure your life is filled with plenty of real time stuff to worry about. Carrying extra burdens is just going to make things even harder on you.

    There are 3 things that have really had an impact during my 12 years or so of depression. Wellbutrin, Talk Therapy, and TMS. Wellbutrin is different for everyone. TMS is different for everyone. But I’ve never met anyone who didn’t benefit from talk therapy. Seeing everything through this cloud of depression, we miss a lot. That trained 2nd party is immensely helpful in pointing out areas where our thought patterns betray us.

    Hopefully this course of TMS will do it’s thing. When it does, you will look back on these posts and see exactly how much unnecessary pain, and worry you are just dumping onto yourself. You’re sick, you are trying your best. The last statistics I read said that 1/3 of TMS patients go into complete remission (from depression). 1/3 experience temporary relief and need more treatments. 1/3 don’t experience anything at all.

    You are worried you are in that last 3rd. However, EVEN IF, you end up being in that 1/3, the next time you do it, you start over again. Very few people will NEVER respond to the treatment. Like I said, you have time, you have options.

    But your depressed brain is just looking for something negative and scary to latch onto. That is where it feels most comfortable, because it’s well practiced. So it will skip over the good, and attach to the negative, so that it can run it’s favorite patters in your head. Remember I mentioned the cloud of depression through which we perceive everything? That cloud, often functions like a filter, blocking the good,joyful,happy but anything at all negative, your brain is like “Come on in, you’re the next contestant on “I’m a shitty person!” Then you start to think “Nothing will ever help, I’m a bad person, I’m trapped, I’m helpless.” None of that is true. Your brain is, quite literally, picking and choosing what it wants to see/think about, but in the depressed state, it only sees the bad. I’ve experienced it twice…depression “remission” I guess you would call it. Both time, when I looked back on what I was thinking a couple months before the relief, I realized that ALL of my thinking during that time…was wrong! Factually, perceptively, mentally, emotionally…all of it. Everything i though during those really dark times…wasn’t even close to accurate.

    You must learn to distinguish the difference between “I am” and “I feel.” Because the things that you ARE, are probably mostly positive. What you FEEL right now, is mostly negative. “I’m a terrible person” < highly unlikely. “I’m helpless” < with very few exceptions, probably not. “Nothing will ever help!” <there is no way for you to even know that. “I’m trapped” < almost never is this the case. You feel trapped (and all the above) because you are creating barriers. You have put yourself in a little box, with walls that you have created in your head. Of course you feel trapped. I’ll give you an example. I had to stop working altogether bc of the Fibro, CFS, and seizures. I’m a 37 yo man. I look young, strong and healthy. But during that period, I would swear to you I was trapped. What am I doing to do? I can’t work anymore, I’v been trying and failing hard for 7 years. Oh me oh my, what is a man to do? I was stuck. The world was ending. A therapist helped me to realize how epically stupid I was being. I sold my biz for $90K. We budgeted a little tighter and we were fine.

    But I was trapped….nope. I wasn’t. I FELT trapped. And because I FELT trapped, that rolled into, “I AM trapped.” When one is running around like Chicken Little yelling “They sky is falling, the sky is falling” they generally aren’t thinking clearly, or looking around to see what is ACTUALLY happening. It’s like our brain becomes this fantasy land, in that, nothing in it is real. You most likely are not, any of the things you are thinking. You FEEL that way. Learning how to separate the two will go a long way into helping you make progress.

    Depressed people are often told that they can’t control it. That’s a fallacy, and often makes people feel helpless. It takes all your power away, to hear that it’s not something you can help. I understand what the people mean, but the wording isn’t right. What depressed people should be told is that it isn’t their fault, they didn’t choose this. And holy cow are they not alone. But they CAN influence (mildly control) some aspects of it. And often times, just that little bit, can make a huge difference.

    You ever hear the expression (or use it like me lol) “I can’t turn my brain off?” It’s because their is a race track in your head, that your brain LOVES to drive. It LOVES it, craves it…it actually seeks it out. Your depressed brain, every day, is actually looking for a vehicle to drive on it’s favorite little race track in your head. “I forgot to pay a bill,” “I forgot to give my kid lunch money,” “I missed a dr. app.”

    Any of that…your brain picks it up, and vroom vroom, the negativity race in your head begins. Often times running all day, and all night. Till that vehicle is out of gas, and it grabs another one. Or maybe it sees a vehicle it likes better. So it will drive that one till it’s out of gas. Sometimes, it’s several vehicles at once.

    No matter what outside aids we use, be it TMS, or meds, we have to learn a couple key things. 1. We have to stop letting our depressed brain pick what vehicles to drive around in our head. 2. We have to pave different tracks (thought patterns, I’m getting a little deep in the analogy lol) The old ones are ugly, full of traffic and noise. We can build new ones, we’ve just never thought about it.

    Visualizing the above can actually be quite helpful. You have a favorite car/bike etc? If not, find one. Also you need a car that you hate. You have a favorite type of road/travel experience. Also a least favorite.

    Every time a negative thought happens and your brain wants to take it and run, give it a good thought, imagine the nice new roads it will travel. The stops it will make, the scenery. And every time you do that, you reinforce that new road (thought process lol) Some people like to have a list of different cars they drive for different reason. E.g. My daughter told me she loved me…that’s a VW beetle type of ride (if your a woman. If your a man, step out of the car immediately lol.) Or my husband told me I’m attractive/cute, that’s more of an expensive Mercedes kind of thought. Just have fun with it.

    Don’t forget your seat belt.

    #5404

    colleencasey
    Participant

    Keep_Hoping:
    So glad that you are getting consistent and similar support in regard to how individual responses are to TMS, how eclectic our approaches need to be as there are so many variables when dealing with the challenges of depression as we all have spoken about, and the sunshine of hope in your message. I think Buddy addresses so many relative issues and points about depression that we can relate to. There is a fear factor involved for some of us when we do start to improve, which questions whether or not these improvements are substantial or even real. Buddy could not have said it more accurately as he addresses the patterning and cycling of thoughts and the intervention that is helpful. I was a TMS Coordinator after my treatments for a while and the patients I saw validated Buddy’s point about individual differentials and individual pathways in response not only to this treatment, but the overall approach to our brain disorders that we need to take. Attitude and persistence in managing our illness, with an open mind and a firm knowledge that this challenge indeed is a tough one can be helpful. We can either put one foot in front of the other (even when it feels impossible) or we can sit down (when the pull is so strong we don’t think we can stand up). Buddy’s partnering with someone who is a willing support system is striking and sounds positively powerful! I have a therapist who provides insight, knowledge and support for innovative and unique pathways to growth and I find it coordinates with his description. Our course in life is to deal with this illness. There are resources, people, supports, tools and information that can support our journey. The one thing I do think that is critical is being cognizant of what is in our lives that we can be grateful for. I read an article the other day about a scientific study that reports, if you list 3 things you are grateful for and write 2 mins on the happiest thing that you experienced each day, it can elevate your mood markedly. When you add new efforts to the management of your depression, it keeps you in a forward motion. Love Buddy’s reference to the difference between I am and I feel. Working with this concept has been pivotal to my growth. And if it makes even the smallest of differences, its an improvement. Do something good for yourself for all the energy and efforts your are putting into dealing with this challenge!

    #5406

    Buddy
    Participant

    I just wanted to add something since we are talking about the cognitive aspect of this disorder. And this may apply more to me than other people but, I think understanding the concept is helpful.

    I struggle with feelings of guilt, a lot. I’m a hardcore drug addict, a poly-drug addict actually. I’ve been clean for many years, but 15 years ago (I’m stealing the following line but I can’t remember from where) I was as pitiable a soul as you could ever meet. I have had relapses. I deal with a lot of very dark stuff from my childhood. Extreme physical abuse. Fortunately for me and the rest of the kids there, it wasn’t sexual. But as a 5 year old, I saw more violence than many people see in their entire life. Extreme violence. The first (first!) fight I saw in which one person tried to stab the other, I was 5. And I was standing 8 ft away as the mother (my babysitter) pulled out a huge screwdriver and tried to stab her son, several times. Unsuccessfully thank goodness, but he ran out the door, she threw a vase at him that smashed on the wall, she then kicked me down the steps. Which wasn’t surprising, that was a regular occurrence. I don’t know how a person, ANY person, can kick a child down their stone stairs and watch them “pinball” off the walls. But I’m sure you can imagine, if this woman was willing to stab her own son, how she treated the rest of us. It was a terrible place to be, and unfortunately, I was there for a long time. I saw many things that I will never get to “unsee.” I’m not blaming my later drug use on that period of time, but I’m sure it didn’t help. However, I’m also sure it could have been worse.

    Anyway, feelings of guilt…or when I think of things from “the babysitter’s” we can often try to put it out of our head. Or with FMS, I have pain daily….you just try to put it out of your head. But as many of us have found, even though we are trying, we aren’t successful.

    The White Bears Study is extremely helpful with this. This is not the actual study, it explains the study and comments on the results. I feel it’s more pertinent. I’m sure you can google the original. But this is pretty thorough

    http://www.apa.org/monitor/2011/10/unwanted-thoughts.aspx

    Here is an excerpt from the above page that explains what I’m talking about in a nutshell. But I encourage everyone to read that page. The results will amaze you….

    “”Try to pose for yourself this task: not to think of a polar bear….

    Don’t think about a Polar Bear

    Think of anything else…

    and you will see that the cursed thing will come to mind every minute.”
    That observation comes from “Winter Notes on Summer Impressions,” Fyodor Dostoevsky’s 1863 account of his travels in Western Europe. But the research that proved it true came more than a century later, from the lab of social psychologist Daniel Wegner, PhD.
    Wegner, a psychology professor at Harvard University and the founding father of thought suppression research, first came across the quote more than 25 years ago.
    “I was really taken with it,” he said in a talk at APA’s 2011 Annual Convention. “It seemed so true.”
    He decided to test the quote’s assumption with a simple experiment: He asked participants to verbalize their stream of consciousness for five minutes, while trying not to think of a white bear. If a white bear came to mind, he told them, they should ring a bell. Despite the explicit instructions to avoid it, the participants thought of a white bear more than once per minute, on average.”

    Thought suppression is a tricky thing. The more you tell yourself NOT to think of something, the more you think about it. So I tell myself every day, the pain isn’t that bad. Don’t think about the pain etc. It doesn’t work. The harder you try NOT to think about it, the more you will think about it.

    My therapist taught me this trick (as you will see, I highly recommend seeing a licensed Therapist). When I want to stop thinking something…I ACTUALLY let myself think it. Seems counterintuitive no? Indeed it does, but it works. The secret is to let your self think it. Don’t beat yourself up about it, don’t try and stop it. But you must do two things. 1. You must realize that the thought is just like I mentioned above. It’s the race track that your brain loves to drive, because your brain is not healthy right now. It has no bearing on you as a person. 2. You must change your activity, location or something. Your brain will follow your body. If your body changes activities, or you put it in motion, or move to another room, or get the mail, ANYTHING. The thought will dissipate in about 12 seconds. And due to the new stimuli, whatever that is, it will tend to pick up a new thought.

    Most people’s brains can only concentrate hard on a thought for 12 seconds before the brain will shuffle and switch gears. Your brain CAN stay on the same topic…we learn how to do that in school. What we are doing now though, is taking advantage of the brains natural inclination to process/drop …process/drop.

    So if the thought comes up, pay it no mind. Yes, you know it’s there, you know it’s happening, you know you don’t want it to. The best way to stop it is to just allow it, and put your body in motion. The brain will follow the body. The thoughts tend to dissipate very quickly. But you have to learn to acknowledge they are there, and not feel guilty about it.

    It’s exactly like the white bear study above. The more I tell you not to think about a white bear, the more you are going to think about it. It’s the same with thoughts. The harder you try NOT to think about something, the more you will think about it. You are almost literally telling yourself, “Don’t think about a white bear, don’t think about a white bear.” The more you do that, the more you will think about white bears.

    It’s very similar to falling asleep. The more you TRY to fall asleep, the harder it becomes.

    The brain is very smart, and the control center of the entire body. However, it is PART, of a larger system, that must answer to the other parts. So we can use a little body “judo” to make the brain switch gears.

    Think about it….trying to make the brain switch gears by reasoning with it as to why we should not be thinking what we are thinking…you are trying to use your brain, to try to defeat your brain. All that is happening now is you are SUPER thinking about whatever it is you don’t want to think about. Use your body, to defeat your brain.

    #5555

    zsazsa
    Participant

    First of all, what an amazing forum! I had TMS treatment earlier this year. With all my research, I’m not sure how I didn’t find this forum previously. I just placed a separate post regarding some relapse issues I’m having. However, I’ll add my experience in response to the posts about fears if treatment is working.

    I agree completely with the previous post by Buddy on April 22, 2016. My treatment was a rollercoaster of ups and downs. It worked immediately, then I experienced “the Dip” which is terrifying. I also ended up having bilateral treatment, as anxiety became intense as my depression dissipated. And although I have a high pain threshold, as treatment intensity increased, it did hurt. There were times I had to simply will myself through treatment. But by the end I was definitely improved, if not 100%. I went from not sleeping and eating, crying all day, and having my first true thoughts of suicide (it was not about if, but when) to being ok.

    I do think you have to relax, have some faith, practice good selfceare, make sure not to miss appointments!, give your doctor honest feedback, and see it through to the end. Everyone has a different treatment experience. I have a lot of compassion for those people having a difficult time during TMS treatment and admire your bravery.

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