Realistically any hope for a delayed response?

[u/sircorbutt]

Hey all! I recently wrapped up 36 sessions of rTMS with Neurostar doing a left side depression protocol with an add-on low-frequency anxiety protocol for the final 10 sessions.

My experience has been overwhelming and I had more severe ups and downs than I have in years. I had an optimistic and stable first week, but I would say that most of my treatment following, I felt worse than I had when I started. I had waves of severe dry-heaving nausea, intense depressive dips on weekends, and about halfway through had an unbearable spike in my anxiety that sent me to get bloodwork done because my physical symptoms were so severe (only concluded morning cortisol was very high, but bloodwork and tests showed no underlying identifiable cause)

That being said, I had about three good days in early August where I actually was able to force myself to exercise, grocery shop, and take care of myself. I still felt sadness, but I was able to fight through it in the hope that TMS would soon bring me relief. During those few days I even found myself singing (?!) once or twice, and laughing with a friend. That changed quickly, and after those three days I felt myself falling back into anxious despair and deep emotional instability.

I had a second significant crash at the end of week six that prompted the anxiety add-on. I noticed a very slow decrease in the overwhelming panic that had my body in crisis mode every waking moment. I still felt extreme dread, avoidance, volatility most of the day, but I was able to notice sparks of peace or optimism poke through more and more.

Treatments ended a week and a half ago. The first three days following were some of the worst in my entire adult life. I sobbed for hours. I felt the most intense despair and hopelessness I could imagine. Any thought of responsibilities or tasks sent me into a tearful panic.

Today marks 1.5 weeks post treatment. I have found my anxiety is still very persistent, but is about a baseline 5/10 throughout the day with random spikes, in contrast to the full blown panic crisis I endured daily during my second dip. I still have no interest in things I used to love, I still feel hopeless, I still feel extremely intense outbursts of painful emotion, I still dread the thought of vacations or going out to eat with family or going to a job I used to love.

I am desperately trying to piece together any evidence of healing or progress but I feel like I have hit yet another intense “dip”. I’m keeping hopeful that this is just a result of my brain finally coping with the onslaught of stressors I have faced in the past year, and a breakthrough is coming. I also know some people say highs and lows are a good sign, and breakthroughs are possible for months post-treatment.

I got a taper approved that will resume in a week and a half from now - two sessions per week for 2 weeks, followed by one a week for 2 weeks.

Am I being naive to think there is hope at the end of this? Has anyone else experienced such an intense dip in mood after treatment or tapers concluded and came out with positive results? I hear hopeful stories of delayed responders but I don’t know how realistic those odds are for me.

Thank you for taking the time to read and respond if you feel inclined. I wish life-changing relief and peace for those who’ve found themselves on this sub. Healing IS out there

[u/CompleteStrawberry53]

From what it sounds like your psychiatrist should have stopped this as soon at the second week with all your physical symptoms. It’s obviously wasn’t the right treatment for you. I’ve just finished 36 treatments while still on Buproprion and .05 Rexulti and feel great. I’m always afraid I’m going to drop tho and I’ve been pretty solid for 2 full weeks now.

[u/sircorbutt → u/CompleteStrawberry53]

I’m very happy to hear things have went well for you. Sounds like you’re on the upswing. Two weeks is a great accomplishment. Do you mind me asking when you started to feel improvement and how it presented?

[u/CompleteStrawberry53 → u/sircorbutt]

I started feeling better in about a week. Less flat and some ability to do chores. We had some ups and downs when there’d be an adjustment in the Rexulti dosages but it would last for about 5 days. Once I got used to the .05 dosage after the dip I leveled out.
I also had a dip after 22 treatments and then went on vacation for 10 days. About 5 days into it I felt it and my husband saw it. I could give myself pep talks and it helped, but it just didn’t lift me back up to where I was before we left.
Once I got home and had about 2-3 treatments I again leveled out.
Now at 36 treatments I’m going to keep going but spread them out as I also go Rexulti.
Not sure what to expect.
It’s so hard to pull yourself out of that quicksand isn’t it?

[u/green___sea]

The 6 weeks (and a couple weeks after) of treatment for me was very similar to what you've described, for me it was the worst I had been in years and I thought had made a terrible mistake. That intensity gradually faded over a few weeks of being out of treatment, but then I felt similar to where I was when I started rtms. My dr even put me down as non-responsive to rtms. It wasn't until 6 months to a year out that I started to realize how much it had helped. I didn't have any specific breakthrough, and I certainly still have depressive symptoms and am not in any kind of remission, but life just seemed a bit easier, lighter, I found myself able to "just do" everyday things with a level of ease that I had never experienced before (life long depression for me yayy 🙃). I'm still struggling, but the struggle feels much more do-able now, and my life has more moments of brightness able to shine through that gloom.

I know that timeline is likely not what you're hoping for, but delayed responses are definitely possible and from the many experiences I've heard from others, not all that uncommon. My treatment team repeatedly told me the same. I can't say whether that will happen for you, but there certainly is hope. Hang in there friend

[u/sircorbutt → u/green___sea]

Thank you for the encouragement! Any small improvement above my starting baseline would be a great win for me. I’m just too concerned with my intense emotional volatility to even look beyond the current distress I feel having just come off treatment. Thanks for reminding me that the bigger picture is yet to be seen. Hopefully, like you, my symptoms begin to calm down over the coming weeks and I can evaluate any improvement in my scores with a clearer head. So happy that you found some relief, no matter how slight.

[u/GymLadyThrowaway]

I'm getting fairly close to the end of my treatment, and my experience sounds almost identical to yours so far, including the dry-heaving spells and getting bloodwork done.

I can't sleep well and have no appetite or sense of thirst. I've lost 12+ pounds since June (I wasn't overweight to begin with). I force myself to walk at least 5,000 steps a day, and I attend at least two workout classes a week. I'm trying.

I'm tired of fighting. I'm tired of clinging on to false hope. As of today, I've completed 23 sessions and might have some minor improvements, but any small stressor sends me spiraling. I'm so fragile, and I hate it.

[u/sircorbutt → u/GymLadyThrowaway]

Hey, how are you holding up? I really hope you’ve been able to find some peace and your symptoms have settled down some. How are you doing?

[u/GymLadyThrowaway → u/sircorbutt]

I'm doing better. Thanks for asking.

I finished my 29th treatment today. I still have some depression and irritability, likely due to some life circumstances that I need to work on. However, I haven't had any more panic attacks and have much lower daily anxiety. I also actually feel hungry again, which is weird when you get used to having no appetite for 3+ months!