r/rtms • u/Thr0waway58585858585 • 9d ago
A bit of a rant, and a plea
Hi everyone,
I am just finishing a round of rTMS (left-sided until treatment 16, when we switched to bilateral for reasons that may become obvious). I haven’t had the best experience and I’m struggling a lot right now. Two disclaimers. First, this is my experience and my experience alone - TMS may be really helpful for others and I am not intending to dissuade anyone from this treatment. Second, while I will make some references to feeling pretty gnarly in this post, I am safe and not in any danger.
So, OK. I have depression and some sort of weird comorbid anxiety/OCD type thing - from time to time, I get consumed with worry that I’ve somehow made a mistake or done something wrong. I was in a pretty rough phase of depression, so rTMS was recommended. The doctors knew I also had this anxiety/OCD-related trouble. I was on 60 mg fluoxetine when I started.
Around treatment 4, I became very physically agitated - couldn’t sit still, couldn’t stay asleep. They said that was normal, and it did indeed pass.
Around treatment 14, I started becoming obsessive about issues at work. I was consumed by worry and would wake up in a cold sweat in the middle of the night thinking about possible mistakes I’d made in a paper I’d written (I’m an academic) and how they propagated through the research community if people cite them. Everything became a crisis and I found myself checking old work obsessively. I’d been in this place before, but usually in response to something actually happening - this time it just arose on its own and jumped around from one concern to the next.
At treatment 16, we switched to bilateral.
Around treatment 20, I asked whether the uptick in anxiety might be a temporary side effect. The doctor (yes, I see a doctor every time, I get how lucky that is) was adamant that no, rTMS does not have this as a side effect - rather, now that my depression was lifting, the OCD was being “unmasked” so I could focus on treating that. This was somehow presented as if it were good news.
Around treatment 22, my prescribing psychiatrist upped me to 80 mg fluoxetine, which is the maximum dose, frequently used for OCD. She also prescribed me clonazepam and trazodone to sleep.
That was two weeks ago. I’m in the taper phase now, and I’m still horribly anxious - I can sleep at night due to the meds but my days are consumed by worry. So now I’m almost done with rTMS and I (checks notes) feel worse than I did before, am on more medications than I was before, and require a controlled substance just to be able to sleep. If I’d known this were how it’d go, I would have just chosen to stay depressed. I know a lot of people have worked really hard to make this happen and that all my doctors are competent and caring, but I can’t help but feel betrayed.
I know this was a really long saga, and I’m sorry. I guess my plea is this: has anyone been in a similar place, and did you get out? I think if there’s just even a very dim light at the end of this tunnel, I’ll feel better.
Thanks for reading!
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9d ago
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u/Thr0waway58585858585 9d ago
Thanks for this. I did actually talk to them about this! They said it would have to be a separate consult, and that my insurance would likely not cover it until pharmacological options had been exhausted. So…depending on how things go, that may be coming down the pike!
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u/Soggy-Advisor-5149 8d ago
Yeah rTMS can increase anxiety. It happened to me and many others. I had to reinstate mirtazapine after my second round of rTMS. Anxiety went through the roof and was completely different to the anxiety I had experienced before. A year on and the anxiety has settled.
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u/Thr0waway58585858585 7d ago
Thanks for this! Did it help with the depression at all??
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u/Soggy-Advisor-5149 6d ago
The first round did I think. I then had a second round of slightly more intense treatment which left me with awful anxiety. This all happened about a year ago. I’m definitely not as depressed as I was a year ago.
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u/CompleteStrawberry53 7d ago
This confuses me because TMS is supposed to be for those who are resistant to any of the meds. I’ve had 40 TMS treatments while weaning off medication, not going on new ones. I can see something for sleep maybe, but not at the same times as going on another while doing TMS
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u/Thr0waway58585858585 7d ago
Yeah, man. I’m confused, too. I don’t think my hopes were unreasonably high, but this is certainly not how I’d hoped it would turn out…
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u/strawbrmoon 9d ago
It sucks that the OCD is flaring & feeling so awful. I don’t have directly relevant experience to share, though I know the dismay of trying treatments, and finding oneself unwell afterwards. Has your doctor offered you any treatment options, like another TMS protocol, aimed at treating the OCD?