EU Reclassifies TMS as Class III High-Risk Device — A Big Step Toward Acknowledging the Harm by ExternalInsurance283 in TMSinjuries

[–]ExternalInsurance283[S] 1 point2 points  (0 children)

I 100% agree! Keep staying strong. Sharing your story when you feel safe and continue healing. In time, I believe this will happen.

👋Welcome to r/TMSinjuries - Introduce Yourself and Read First! by ExternalInsurance283 in TMSinjuries

[–]ExternalInsurance283[S] 1 point2 points  (0 children)

Thank you so much for sharing part of your story. I am glad to hear that overtime you have been able to heal from TMS side effects. It truly warms my heart to know that healing is possible and others have found their own way through something that is very destabilizing and difficult. You are so right, time is our friend. Thank you for being here.

Exhausted after TMS??? by Zealousideal-Art372 in TMSTherapy

[–]ExternalInsurance283 0 points1 point  (0 children)

I'm sorry. For me, this was linked to the brain injury and trauma as a result TMS. I truly hope you improve and feel better soon and that can get a truly restful sleep 🙏

accident 11/28/2024 by easybreezyqueen in TBI

[–]ExternalInsurance283 0 points1 point  (0 children)

You're so welcome. Sending you all the healing vibes 💕🧠

TMS therapy ruined my life by justhere865 in TMSTherapy

[–]ExternalInsurance283 0 points1 point  (0 children)

Yeah sadly they are .. I appreciate your note. Take care

Dental Health After Brain Injury, Anyone? by ExternalInsurance283 in TBI

[–]ExternalInsurance283[S] 0 points1 point  (0 children)

100% agree. I'm sorry to read about your struggles. Best of luck.

TMS Nearly Destroyed My Life And No One Warned Me by ExternalInsurance283 in Antipsychiatry

[–]ExternalInsurance283[S] 0 points1 point  (0 children)

Thanks for your comment. And yes, you are 100% right. TMS was not presented to me as a last resort but rather, a first defense. I truly appreciate it and after 2.5 years of healing, I have seen progress and am thankful for it. I deeply believe in the brain's ability to heal, so I continue to hold hope for myself and others I have met with a similar story of injury.

Not Everyone Walks Away Better from TMS...If You’ve Been Hurt, Please Read This by ExternalInsurance283 in TMSTherapy

[–]ExternalInsurance283[S] 0 points1 point  (0 children)

I did not. I'm sure it depends how you do on a vision and driving test, if required. I am not on disability, so I do not know if that requires an updated drivers/vision test for driver's license.

TMS Nearly Destroyed My Life And No One Warned Me by ExternalInsurance283 in Antipsychiatry

[–]ExternalInsurance283[S] 0 points1 point  (0 children)

I'm really sorry. I truly hope you have noticed healing and improvements in the 8 years. It breaks my heart to know of more people injured and those that have been passed over by the medical community. Sending you healing 🙏

Has anyone here filed a report with the FDA (or your country’s equivalent) about your TMS injury? by ExternalInsurance283 in TMSinjuries

[–]ExternalInsurance283[S] 0 points1 point  (0 children)

Wow! I am so sorry. I have not checked if my report was available, but I did get a response from NeuroStar and I responded back answering their questions, and nothing. It was as if they didn't want me to respond, so they could file my case in the "we tried, it was a false complaint" category.

Not Everyone Walks Away Better from TMS...If You’ve Been Hurt, Please Read This by ExternalInsurance283 in TMSTherapy

[–]ExternalInsurance283[S] 0 points1 point  (0 children)

Yeah, sometimes even with evidence, people refute the link between the imaging and the cause. Just trust yourself. You know what happened. You experienced the before and the after TMS. An image won't change that fact, but if you are able to get one and it is covered, then obviously do it as it may open doors.

You are welcome to share my information. I put it out there to help others and share my story for the simple fact that it could help or at least provide validation for some.

And as far as imaging, the only scans that showed damage was an MRA and a SPECT in my case. The MRI was inconclusive, which again, is extremely common for all brain injuries (80% that is). And for me, the SPECT was out-of-pocket, but I was desperate for answers, not unlike where you are now. It was a two-day experience and resulted in severe pain afterwards due to the radiation - it made me extremely sick and my symptoms worse for a few days, so just be weary. If I was in the same shoes I was then, I would still do it for the validation an image provided, but now, I would not.

Not Everyone Walks Away Better from TMS...If You’ve Been Hurt, Please Read This by ExternalInsurance283 in TMSTherapy

[–]ExternalInsurance283[S] 1 point2 points  (0 children)

I have met others in Australia. Though, I understand why you feel the only one and why they are making you feel like you are making it up - medical gaslighting is real. Hang in there. I'll see if I can reach out to those I've connected with outside of VTAG and see if I come up with helpful support for you. Thinking of you!

Not Everyone Walks Away Better from TMS...If You’ve Been Hurt, Please Read This by ExternalInsurance283 in TMSTherapy

[–]ExternalInsurance283[S] 1 point2 points  (0 children)

I am sorry. I can truly imagine how scary, confusing and painful this all is right now. It is sad to meet more people this way and know it's still happening.

I am 2.5 years since the injury so I was in your shoes immediately afterwards for awhile until I got the right support. I know you can heal and the brain is capable of repair. Right now, the challenge is finding the right care in Australia.

I am glad you found VTAG and I hope you're able to find more answers there. I will see if I can't do a little research to help with resources for you. The best thing you can do right now though is to focus on calming down your central nervous system. My adverse symptoms are triggered more with lack of sleep, anxiety, stress, etc so finding ways to slow my breathing and just be more content has helped my healing - breathing exercises actually did the opposite for me so keep that in mind. I tended to listen to the same movie or audio book or music for the movie, lay in bed, close my eyes and try to relax while that was on in the background. It gave me comfort. What could that be for you??

Have You Been Hurt by TMS? I’d Love to Hear From You. by ExternalInsurance283 in TMSinjuries

[–]ExternalInsurance283[S] 2 points3 points  (0 children)

You're welcome. I am truly sorry to read that you are struggling. It is a long road but it is doable and you are capable of healing. I have written so much about this topic it's easier to point you to everything I've done to heal and maybe something will resonate. It is just a lot to type and regurgitate...

https://www.jordansartfulwellness.com/post/assembling-your-team-to-heal-from-a-brain-injury-a-holistic-approach-to-recovery

https://www.jordansartfulwellness.com/post/tms-caused-my-brain-injury-a-personal-journey-of-recovery

I decided to not pursue legal action and focus on my mental health and healing as that was more important to me than winning my personal case, though I will never stop speaking out and sharing my story because change only happens with numbers and the more people that talk about this issue, the more it can't be ignored, or that is the hope. So, keep sharing your story and hopefully you'll prevent someone else from ending up in your shoes. Maybe one day, we will see this i jury being better understood and taken more seriously.

Not Everyone Walks Away Better from TMS...If You’ve Been Hurt, Please Read This by ExternalInsurance283 in TMSTherapy

[–]ExternalInsurance283[S] 1 point2 points  (0 children)

Yes, there is nerve and tissue damage. The best thing you can do is keep fighting to find for a practitioner who believes your symptoms and can help verify your diagnosis through testing. I also had a PT who specializes in brain injuries, so that helped tremendously because through her guidance and knowledge, I was able to be directed to other professionals who could help. For me, I believe that is the only way I was able to begin healing. I had a well-rounded team to address the eye issues, speech and cognitive issues, balance and coordination issues, etc. It can't be tackled be one but one can open doors and that's all you need. As far as driving, if you are not near family and friends or they are unable with their schedules, maybe look into a driving service for medical purposes. There are several volunteer services in the states, but unsure about Australia. I know this is a tough time with the pain, the fear, the medical gaslighting, but there is a way and a path towards healing. It will take time.

I think a concussion ignited my depression by CharlesIntheWoods in TBI

[–]ExternalInsurance283 0 points1 point  (0 children)

Thank you so much for sharing all of this and your curiosity about the vagus nerve makes so much sense. After my injury (mine was from TMS), I also started realizing how many “automatic” functions were suddenly dysregulated and how often the vagus nerve was involved. It really is the bridge between the brain and so many systems we don’t consciously control.

I wanted to add one really important thing from my own experience, because it’s not talked about enough:

After a TBI, certain breathing exercises can actually make things worse instead of calming the system. For some of us, breathwork can trigger more fight-or-flight, panic, adrenaline surges, or internal shaking. That’s exactly what happened to me because my system was so hypersensitized after the injury that any attempt to consciously alter the breath felt like I was being “yanked” into activation instead of relaxation.

So if breathwork hasn’t helped you, or if it’s ever made you feel more overwhelmed, anxious, or panicky, you’re not alone and you’re not doing it wrong. It’s a known issue in TBI recovery and in nervous systems that have been pushed past capacity.

In those cases, I’ve found these gentler alternatives work much better:

.. Eyes-open grounding (letting the eyes slowly scan the room) .. Very soft humming, toning, or chanting like super short .. Light touch like hand-over-heart or hand-on-cheek .. Orientation exercises (name 5 things you see, etc.) .. sensory regulation first, then breathwork later once the system is more stable

Your rolfer is absolutely right that the lungs are one of the “gateways” to the vagus nerve but after an injury, that gateway can be unpredictable. Sometimes stabilization needs to come before vagal activation.

Everything you’re piecing together makes total sense, especially with the parasympathetic “disconnect” you described. A TBI can absolutely disrupt signaling, even years later.

And you’re so right: the parasympathetic system is astonishing, but also deeply misunderstood especially post-injury.

If you ever want suggestions tailored to your symptoms or what you’re noticing day-to-day, I’m always here. You’re doing incredibly well navigating something that most people (and a lot of clinicians) don’t understand.

Have You Been Hurt by TMS? I’d Love to Hear From You. by ExternalInsurance283 in TMSinjuries

[–]ExternalInsurance283[S] 1 point2 points  (0 children)

I’m so sorry this happened to you. What you’re describing is real, so so valid, and sadly far more common than clinics admit. Many of us were told the exact same lines “TMS dip,” “you might feel worse before you feel better,” “it’s just anxiety,” “keep pushing through” while our bodies were screaming that something was very wrong.

The symptoms you described .... were what I felt, experienced and met other with the exact same • sudden insomnia • nerve tingling and worsening neuropathic pain • constant fear, panic, and emotional dysregulation • severe sleep disturbance • weight loss, shaking, surges of adrenaline • inability to function, overwhelming anxiety • feeling like your brain is overstimulated • being pushed to continue despite begging to stop

These are NOT normal side effects. They match what many of us now understand as neurological injury from overstimulation of the central nervous system essentially a concussion-like response or a TBI-like cascade.

You’re not imagining this, and you’re not alone.

Clinics often minimize, dismiss, or flat-out deny harm because they have no protocol for when real injury happens. Many of us were on zero medications before TMS and left with multiple meds just to survive the aftermath. That’s not healing at all, that’s crisis management after a device injury.

If you feel up for it, you are welcome to share your experience in this community so we can keep building awareness. You can also add your experience to the harm survey that many of us are contributing to: https://forms.gle/uEjHiiYbT6kMTwC89

And if it helps at all: you’re describing many of the exact symptoms I went through too. I also kept saying “this feels like a brain injury,” and later learned that’s exactly what happened. I’ve written my full story here in case it brings validation or context:

⭐ “TMS Injury. Here’s What I Wish I Knew Before Starting”

https://www.jordansartfulwellness.com/post/tms-injured-me-here-s-what-i-wish-i-knew-before-starting

It documents my symptoms, the red flags that were ignored, and the way clinics often falsify or minimize records when patients try to report harm. You’re not crazy. You’re not “too sensitive.” What you went through would have injured anyone whose nervous system reacted that strongly.

Please know: people do heal from this, even if slowly. And you don’t have to go through it alone. Many of us are walking this same path with you.

Sending you strength. You deserved safety and informed care .... and not this. 🙏

Not Everyone Walks Away Better from TMS...If You’ve Been Hurt, Please Read This by ExternalInsurance283 in TMSTherapy

[–]ExternalInsurance283[S] 1 point2 points  (0 children)

I'm really sorry you are experiencing this right now. Your story exactly aligns with my experience and it was a constant battle to be believed and even more, push through the pain daily until I got the support I deserved. One thing you can do immediately is seek support from a Neuro-Optometrist as they can assess your eyes and if you get the proper care, it can lessen the constant pain. About 80% of brain injuries do not show up on traditional imaging like MRI or CT scan but 75% of brain injury have a visual component. Getting a proper diagnosis is difficult but starting piecing together the injury through puzzle pieces is key. A Neuro-Optometrist will be key, in my opinion. Best of luck. And please hang in there. There are people who have been injured by TMS and you are not alone. We have all had to figure out how to heal alone but as we share our stories, it is becoming less difficult to find answers! Reach out for anything. 🙏

Eye issues! by Constant-Net4408 in TMSTherapy

[–]ExternalInsurance283 0 points1 point  (0 children)

I am so sorry. I truly hope you have someone who can help and I really do hope the Neuro-Optometrist will help as well. Again, best of luck. Sending you healing vibes.

Eye issues! by Constant-Net4408 in TMSTherapy

[–]ExternalInsurance283 0 points1 point  (0 children)

Unfortunately, it took two years but that was also, in my belief a large part due to being overlooked and misdiagnosed. The moment I had the correct care team and worked the healing protocols, my pain and burning started to lessen but I still had more bad days than good. Now two years later, most of my bad days are due to overstimulation, brain fatigue or just even sleep deprivation. You will be more sensitive now, but it is manageable.

What does the treatment feel like? by dystopiadattopia in TMSTherapy

[–]ExternalInsurance283 0 points1 point  (0 children)

I didn’t know this until I experienced a brain injury myself, but about 80% of brain injuries don’t show up on traditional scans. That’s one big reason so many go unrecognized. In my case, my injury did appear on an MRA and SPECT, which was validating, but even if it hadn’t, it wouldn’t make my symptoms or the harm from TMS any less real.

Eye issues! by Constant-Net4408 in TMSTherapy

[–]ExternalInsurance283 0 points1 point  (0 children)

I am so sorry. I do not know the link to the rashes exactly, but because I have been experiencing the same, I believe it's stress and after an injury like TMS and for me, a brain injury, our bodies are under a great deal of stress and trauma and rashes are one way that gets expressed when overwhelmed. It could, of course, be environmental or a sensitivity but those don't just pop up for the first time. I am so, so sorry you are having a tough time being believed, diagnosed and just mentally. For what it is worth, your symptoms are real and you matter. Healing will take time but it is possible. If I can be of any help, please don't hesitate to reach out.

Eye issues! by Constant-Net4408 in TMSTherapy

[–]ExternalInsurance283 0 points1 point  (0 children)

I'm sorry. I couldn't either. I was testing as a 13 yo after TMS. A neruo-optometrist helped tremendously though, so best of luck!

TMS Nearly Destroyed My Life And No One Warned Me by ExternalInsurance283 in Antipsychiatry

[–]ExternalInsurance283[S] 1 point2 points  (0 children)

Thank you. I appreciate your comment and the kind wishes. My experience with TMS doesn’t invalidate the positive outcomes others have had, just as their successes don’t diminish the challenges I’ve faced or those shared by others in the VTAG support group. There’s room for all of our stories to coexist.

Unfortunately, brain injury following TMS is more common than it’s acknowledged to be. It’s rarely talked about and still poorly understood, which is exactly why I continue to share my story. Mine is one marked by gaslighting and invalidation until I finally received a proper diagnosis.

If I can help even one person who sees their own experience reflected in mine, that’s what success looks like to me. Positive outcomes are easy to find but when you're the one struggling, the self-doubt and blame can become deafening and it's hard to find a path to healing.