Friday, January 27, 2023

Comments by Raina726

Showing 5 of 5 comments.

  • Gayle, I find your success very interesting. Particularly the 3 minutes every other day! I was treated for 5 consecutive days of 20 minutes each. As I’ve thought about it, I do wonder whether just short bursts would have helped me. Instead it was complete overload. It was progressively more painful, deep in my head with each passing day. I was left with a constant headache and sensitivity to sound, movement and light and what felt like PTSD, effects lasting weeks. The deep hurt can’t be summarized by “headache” and I was angry at the time that it was suggested I ‘soldier through’ and continue treatments as ‘headaches’ usually go away.

    The first day I felt something akin to an ‘awakening’ — just a lightness and peace. It was downhill after that. I’m fine now, no permanent damage but I am disgusted that the clinic cared so little about my experience. I wonder if they’re still saying there are ‘little to no side effects or if they say that people drop out.

    It’s about money, I’ve decided. They want to schedule you for 3 months of M-F treatments. They want a formula, just like with medications(which rarely worked for me, except in pediatric doses…) One size fits all. No deviation from that. If I were given a choice I would have wanted to try 1/2 the normal dose once a week. I’m cautious.

    I’ve never heard of 3 minute treatments but that sounds like caution to me, and perhaps that would have worked for me — what I experienced was a complete sensory overload and disruption to my life. We’re all different. These one-size-fits-all approaches of Western Medicine are deleterious to my health. I will no longer participate.

    I’m glad you benefited from these treatments. They don’t sound remotely like what most people here are talking about in terms of length of treatment times and frequency. Perhaps someone considering TMS will see you comments and benefit from being cautious.

  • Dear James, thank you for being so generous with your time and your comments.

    I do think we need to hold them accountable somehow.

    I do intend to write to the higher-ups at both the psychiatry department and the overall health clinic.

    I’m waiting to have a clearer vision for what to say.

    I’ve started writing this reply to your comment 3 or 4 times and just go off on tangents… Clearly, I’m not over the betrayal. It’s been almost 2 months and my headaches are truly gone and mostly the anxiety and triggeredness is gone.

    I hope many people find your articles and take care of themselves as they consider, or try TMS.

    There’s one thing that I’m really certain of and will be including in my complaints. They should let people experience ONE session, and not schedule another one. until they’ve had a WEEK to assess. I really wish I had done that. IT SHOULD be OK to have a single session. It should be encouraged. It’s not. They tell you to push through a week. And of course, they push some people through months of it… That is so wrong.

  • Thank you for those links, James. I will definitely make use of them and write more about my experience. I realize I still feel a little PTSD’d from the whole thing. My experience was made worse by the absence(betrayal) of the people I thought were in my court, the psychiatrist and the TMS administrator. I plan on writing to the director of the health clinic because you can’t say you’re interested in mental health, primarily, when you completely abandon someone experiencing symptoms from a treatment. I want them to know I’ve been with this family health clinic for nearly 10 years, and I respected them. I even worked for them for a year. I’ve written glowing reviews for neighbors… no more. Treat all western medicine with extreme caution, their priorities are warped.

  • James, I just wanted you to know that I read your articles before I started TMS with Neurostar. Thank you! They helped me create boundaries and define what were acceptable side effects. I stopped TMS after 5 sessions. I had horrible side effects: ever present headache for a week, returning for the part of the day for a month. Tinnitus 10x worse, sensitivity to sound, taste, light. Insomnia worse. My emotional sensitivity was extreme, too. It felt like I’d had a concussion, as I had one 10 years ago and it was familiar.

    If it weren’t for your articles, I might have gone along with their encouragement to ‘keep going’ as the headaches are temporary. NO one ever wanted to speak with me about my injuries. I don’t even know how I would report them. I feel betrayed by the health care professionals that administered it and then abandoned me.

    It’s been 8 weeks since I quit and I’m better, but feel like this was such a setback. I wish I could warn people about it.

  • Thank you, James. I read your first two articles before deciding to try TMS. Your articles saved me from doing more than 5 sessions. I was documenting how they went and what concerns I had each day, and monitoring my side effects.

    Day 1 and 2 were OK. In fact I had some really UP and connected moments with myself and nature that felt like the ME of 20 years ago. I slept wonderfully the first 2 days.

    Day 3 – 5 were not OK and insomnia started. Headaches were constant after day 5 and continued for several weeks. I still feel like a part of every day I get a reminder headache though they don’t last long.

    I’m 4 weeks now from the treatments and these are my continuing symptoms:

    My pre-existing tinnitus that usually ranged from 3-5, is now a constant 8-10.
    My hearing is more sensitive, somehow, too. I’ll have the TV set at 25 and suddenly it’s too loud, then I’ll raise it because I can’t hear it.

    I’m emotional in a way that may be explained by experiencing TMS as a trauma. It’s a little PTSD like. I need a lot of time alone and react strongly to things.

    My taste buds don’t work right anymore. I had a similar experience during chemo 5 years ago.
    I don’t know how TMS did it, but it’s been very odd. I’m not on any new meds or anything else…

    I’m having with the insomnia what feels like a second menopause(20 years later…). I wake sweating and hot and it’s a 63 degree room.

    I seriously think If I’d stopped after the first two sessions I would have been fine. It was overload. I wonder if they even consider that some people are sensitive?

    The worst part of this is there’s been no follow up with me about how I am doing. They don’t seem to want to KNOW what my reactions have been and record them.

    I want to report my reactions to TMS to warn others. I’m someone that has been sensitive to medications, I can take pediatric doses of meds and have trouble with ‘the adult dose’ and I’m not a small woman. Chemo was so destructive, I completed only 3 of 6 week-long infusions in the hospital. And ended up with an additional hospitalization for blood transfusions and bowel obstruction.

    3 was all I needed. I think 6 would have killed me.

    This whole idea that everyone is the same is a problem. When I needed sedation about half the anesthesiologists would listen to me about halving the dosage. The times they wouldn’t I’d wake 4 hours later propped in a chair drooling because they expect me to wake within a half hour…

    So, I was wary of TMS because I’m wary of western medicine’s approaches. I’m wary that trials are rarely done on women for medications. I’ve had some extreme reactions to psychiatric meds which have led me to learn to live with my depression or take the ‘safe’ meds that don’t work wonders. Trying new ones after the long list of failures seems risky.

    But I was oh, so hopeful. Especially after those first 2 days. If it were offered as a one time treatment at half the frequency I think I might consider doing it again. But, no. They offer 3 month sessions 5 days a week. Doesn’t that seem a bit crazy? How about seeing what effect it has on an INDIVIDUAL after the first session? Rather than telling patients to ‘stick it out the first week, as it’s the hardest!’

    I’m thankful for your articles because it gave me the framework to question and to monitor myself. I expect there is no permanent damage but I’m suffering and babying myself while I try to find my equilibrium.

    I’m going to be looking for places I can report my symptoms as the administrators don’t seem to care. People need to armed with defenses again this therapy. They need to go in there hoping but cautious and they need to call the shots.

    I’m still not quite right in the head, and I’m still having insomnia as I write this, but I wanted to say thank you many times. I even tried to get them interested in reading your article but there was silence. No interest. Anecdotal. We are all anecdotes and our symptoms are NOT caused by TMS, I get the feeling they’re blaming my symptoms on mental illness.

    Keep doing what you are doing, James.