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  • #33961

    bdw73
    Participant

    My wife had TMS treatment last summer ending in August. she did it for her severe depression. since the treatments have been done, she has gotten uncontrollable anxiety, tremors, memory loss, slurred speach depression and suicidal thoughts. our primary care doctor referred her to a neurologist and after 2 MRI’s he diagnosed her with a brain injury due to the TMS treatment. unfortunately there is very little treatments for this other than time and addictive drugs. she is very bad, she has been referred to the carrick institute in Fla as someone that has treated TMS patients in the past. I am at my wits end and it is pushing me into depression trying to take care of her and help her. looking for help if anyone else has gone through this? tips, advice? thanks in advnace

    #33962

    Vasubandu
    Participant

    Hi, I am very sorry to hear about your wife. I am currently getting TMS, and it has completely changed my life for the better. Before starting it, I thoroughly researched by TMS and ECT. I elected against ECT because of its effects on memory. In all of the research I did, which included medical journals, I never came across a single reference to TMS causing brain injury. You would think that as long as it has been used and as many people who have had it, there would be something. You might consider asking the doctor for the basis of his diagnosis and perhaps getting a second opinion. You ought to get the specifications for the treatment as well.

    If TMS did cause a brain injury, it certainly was not normal. I am an attorney, and I would think that if causation could be proven, you might very well have a medical malpractice cause that at least would pay for treatment.

    I really feel for your and your wife’s situation. It sounds horrible. This seems like a tricky question, and you really ought to get some outside answers.

    #33964

    bdw73
    Participant

    Thanks for the reply, we have been to a neurologist at the mayo clinic and the ohio state university both came up with the same diagnosis, that she shows every symptom of post concussion syndrome. they also have not heard of TMS causing this but she has never had a fall or accident and she shows every symptom, of course that does not show up on a MRI or blood test or cat scan she has had all of them. they have referred her to the carrick institute that specializes in brain injuries and the functional neurologist has seen a few of the same cases so she is starting treatment with them today, we will see how it goes.

    I don’t think we would have a case against the provider of TMS since PCS doesn’t show up on a test or proof so it would be impossible, I don’t blame them, I don’t think they did anything wrong, or they did? I just want her to get better, as a caregiver I am at the end of my rope as well and was looking if others have gone through same symptoms
    thank for replying to me

    #34107

    springercali
    Participant

    Hi I’m wondering if your wife found any relief from going to the carrik institute or anything else she’s done? I reacted similarly to tms and have been looking for some help

    #34108

    junebeatle
    Participant

    @springercali, How soon did your TMS symptoms appear? During treatment, right after? I’m very concerned because my main issue before I began was severe anxiety that came on at 40, along with suicidal depression. I’ve already had neuro cognitive changes as a result of what happened in 2018 via neuropsych testing (lowered IQ to high average, everything else was average, except impaired working memory/attention/concentration) I also just so happen to have an involuntary movement disorder & muscle twitching that they put me on Valium for past 4 months. I’m hoping TMS will get me off Valium and improve memory/anxiety/severe depression since I’m a mom to 3 young boys. I tried so many medications that either confused me more or landed me in ER from exacerbating movements.
    I’m on #19 and it’s been up & down. First 9 days were on upswing, joy, memory…then we’ve been all over the place. I’ve read horror stories other places especially folks with severe anxiety that I already had. I’m very sorry for your experience, I can’t imagine hope and then getting worse. ❤️

    #34110

    bdw73
    Participant

    SpringerCali, the Carrick experience did not help at all, she has taken a turn for the worse, they have put her on 2 different meds, this will be the 6th different type of med since the TMS therapy last fall, and nothing seems to be working, she is very suicidal and I have had to get family to come stay with her during the day to keep her safe, my hope is that this latest med will start working once it is in her system, they say it takes 6 to 8 weeks to fully start working, if it doesn’t, I am not sure what the next step is, I guess admitting her into a facilty, I don’t know

    JuneBattle, her symptoms started towards the end of the TMS treatment, it seemed to work on her depression but made her anxiety sky rocket, it has taken 6 months to get her anxiety manageable and now the deVere depression is back. I know TMS works for some people but it definitely made it worse for my wife

    #34111

    junebeatle
    Participant

    @bd73 I’m so sorry for your family. My involuntary movements came back with a vegenance that had been under control with Valium & my depression was so severe yesterday I cried the entire day, so I’m wondering if TMS is making me worse. I’ll throw this out there for your wife, there is a clinical trial in Atlanta for a deep brain stimulation implant for major depressive disorder if medications don’t help. Tell her to keep fighting no matter the pain inside because there has to be something to help her brain. I signed up for the trial myself as a next step, but I have co-morbities so I don’t know if I’ll qualify. Good luck! This disease is awful!

    #34246

    junebeatle
    Participant

    @bdw73, Did the medications work for your wife? I’m almost done with my total of 46 treatments, I was feeling better last week..then took a turn down again with 1 session left. I know medications are individual, but what is she taking if it helps in case I have to re-try that dead end again? I see things clearly so I think it helped something…

    #34343

    springercali
    Participant

    Hi, any updates? Has anything helped yet? Looking for relief still

    #34346

    entenmk
    Participant

    @springercali,

    What kind of symptoms are you experiencing? I finished TMS 5 weeks ago and still have these “dips” during the day where my mood plummets down. I will feel “okay” and then just get irritable and sad. I never remember experiencing these before treatment It scares me even talking about it, because I pray I can heal.
    I have a combination of anger and fear for going through with this treatment. Again, I personally know individuals whom have had good success, but not for me, and I’m just hoping for some leveling out.
    I also plan on speaking with my pcp about getting a referral to neurologist. An MRI apparently won’t show damage, but maybe he/she can suggest some things to possibly ease my mind.

    Wishing you health – Kyle

    #34350

    springercali
    Participant

    Let me try to save you some time and money. I’ve been through about everything trying to heal myself from TMS, including multiple neurology visits and MRIs. It’s not something that will show up on an MRI and neurologists will most likely dismiss you. You can give it a shot, but unfortunately, when you mention anything mental health related, it’s hard to get people to listen or take you seriously.

    I had a horrible reaction to this treatment, I feel like probably a lot worse than most people who react badly. The pain I’ve been in is not something I will ever be able to put into words. Because of this, I tried so many treatments to try to ease some of that suffering, including ketamine, dieting, neurofeedback, and functional neurology. Unfortunately, I think TMS has screwed up my brain beyond full repair, but I will say that of all these things, functional neurology (the kind specializing in concussion) was the only one that made a difference. Maybe if your reaction wasn’t too severe it could be good for you to try.

    Good luck

    #34352

    bdw73
    Participant

    Thanks for the inquiries, no she has not gotten any better, in fact she is spiraling out of control and is highly suicidal. she has been in 2 different in patient facilities and no improvement,
    Springer Cali, she is experiencing exactly what you are, we did go to a functional neurologist, he did a brain scan and could not point to it, but he stated that all of her symptoms point to a brain injury, the problem is that the only thing to fix that is time, no medicine can, the brain tends to re wire itself. the problem is her symptoms are so bad she just wants to end her life.
    We had an appointment with a Dr that used to do TMS, she told us that it sounds like she was not mapped correctly and they hit a spot that made things worse, of course you cant prove that.
    We have an appointment with a university hospital this week, I am hoping they can use more resources and come up with a mix of meds or something to get her out of this or at the very least get her off suicidal thoughts.
    This has been pure hell

    #34353

    junebeatle
    Participant

    I don’t know if this would help any: https://www.google.com/amp/s/charliefoundation.org/keto-for-tbi/

    There are some modalities for tbi out there, hyperbaric oxygen chambers I’ve heard can help too.

    My special needs son has had good luck with keto. I really hope you have some healing and possibly contact an attorney.

    #34375

    springercali
    Participant

    Tell me how the doctor goes. I’m currently talking to a few lawyers about my case. Found this case recently:

    https://www.dempseyandkingsland.com/blog/2013/august/study-participant-says-she-was-never-warned-of-b/

    #34376

    bdw73
    Participant

    Dr seemed to listen, trying some anti psychotic meds to try and get anxiety and shaking under control so they can start treating, her anxiety is so bad that any med does not seem to phase her.
    The problem with pursuing legal action is there is nothing physical to prove the TMS was the cause, I talked to a lawyer and he seemed to think it would be tough to prove since she had a history of depression they can claim it just didn’t help her but nothing to make it worse.
    It is very frustrating and she is very suicidal, so just trying everything I can to keep her going but it is getting harder and harder each day

    #34377

    springercali
    Participant

    Can I ask what meds she was on before tms and for how long? I worry about antipsychotics because they wreak havoc on your brain

    #34386

    bdw73
    Participant

    I wanted to let everyone know my wife lost her battle with the severe depression and anxiety since her TMS treatment, she ended her life last Monday on her 55th birthday.
    We have been though hell in the year since her treatment, going into 3 facilities that didn’t help, saw neurologist that said her symptoms were the same as a repetitive brain injury, saw a functional neurologist that said the same, went to another Dr that performed TMS to ask for help, she thought she could have been mapped incorrectly. she tried 11 different medications in the past year and she still could not get out of this hell. the only med that seemed to help was gabapentin. the last month she had gotten very dark, and I tried everything I knew how to get her out of it and keep her hope going, flying in friends, leaving letters and notes of hope and love every day, last Monday the suffering came to be too much and she decided to leave us
    She was the most amazing woman I knew, we were together 18 years and they were the best 18 years of my life, even though this last year has been unbearable for us both, I never stopped giving up hope or loving her.
    Please, make sure you ask questions about this treatment, if you have any shaking or twitching while it is going on, stop it, ask them to re map you, or just look for a alternative
    I thank those that replied and tried to help us
    Barry

    #34387

    springercali
    Participant

    I am so incredibly sorry. Please let me know if you need anything at all I wanted to tell you I found a lawyer who is top in the country for pharma and medical device malpractice suits. Give him a call when you feel you can

    http://sheller.com/

    • This reply was modified 1 month, 2 weeks ago by  springercali.
    #34419

    springercali
    Participant

    Hi Barry, I’m so sorry to bother you. I know this is an incredibly painful time for you. I was wondering, if it wouldn’t be too much trouble, if you would be able to email me. I had a very similar reaction as your wife and was wondering if I could ask you a few questions about what happened. pinerl@guilford.edu

    #34421

    crazieforchrist
    Participant

    Barry,
    I’m so terribly sorry for what your wife went through and that it brought her to the point it did. Reading everything you posted was heartwrenching. I’ve battled suicide and depression since I was 13 after being raped by my an uncle, being molested at age 3, than ages 8-11 and beat on as a child also played a part in my decision to attempt as well, but age 13 incident was what really set me off.

    I’ve been in and out of psych hospitals, meds, than no meds for years, did great (I feel my relationship with God helps) but then had a set back this year and attempted due to some major triggers (I always try to avoid those), went to treatment, got out and TMS is what was suggested. I told the psychiatrist I would do some research and let him know. After researching, I found some negatives about it, headaches 24/7, some had twitching, some they got worse and it didn’t help them.

    I went back to him, told him some of the things I found and he said he never heard of them before and asked if I was afraid that I would get cancer. I didn’t say anything about cancer, just stated that there can’t be all positives about this treatment that I was sure there was something negative to it, felt uneasy about it and opted out. It was weird he said cancer though. I just felt that having a magnet, with magnetic stimulation that close to my brain that it seemed nothing good could come out if it.

    People like you, speaking out about this TMS will save peoples lives. Reading your story made me glad that I went with my gut feeling. Please, speak out about it, write whoever you have to (President, Congress, FDA,DEA whoever) and get them to listen. Become an advocate against this TMS. Everyone deserves to hear the negatives because the Dr’s are not explaining them to patients.

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