Tagged: #rTMS #neurostar
March 21, 2019 at 9:36 pm #34007
i’m 17 and have been depressed for 6 years now with DSPD and anxiety. I have horrible fatigue and had to leave school because i can’t function throughout the day. I did 36 sessions of TMS starting around early december/late november and finished january. when i got into the car after my first session, i was able to look outside at the trees and cars and my head didn’t hurt. I immediately started sobbing because i haven’t felt that way since i was 11 years old. I saw that glimmer of hope for one day, and then it was gone. I hit the dip period about 2 weeks in and it lasted til week 5. I had no warning of this because apparently there’s been no study on it so the technician didn’t mention it, so i just thought my world was ending. Things got better week 6, but by better i mean i was a little better than normal. By my last session i was completely back to where i was before. i started at a 28 and ended at a 28. Theres a psychiatrist that they bring in at the place i go to, and he told me that he’s been doing this for 12 years and it looks like i need another 36 sessions and then i’ll feel better. it took 2 months for insurance to approve since i’m a minor, but they finally did. i’m on session 3 now and still feel 2 inches from rock bottom. i’m hoping there’s someone in this group that had something similar and another 36 sessions cured them. i’m young and should be enjoying life, but i’m not living. i’m simply surviving until i can start functioning again. if anyone has any advice or success stories, i could really use them right now. i need some hope to hold onto.March 21, 2019 at 10:46 pm #34011
Hey! I made an account just so I could respond to this. I’m sitting in the chair right now as I type this. I am on my 32 treatment today. I feel like we are going through something kind of similar and maybe we can help each other and keep each other updated on our progress. I am 25 years old and feel so similar to you!! We are young and want to enjoy life and not just be living but feel truly alive! It’s so frustrating when nothing seems to work. I am almost finished my treatment and around the middle of it, I felt something again like when I was a child. It got a little but brighter and I felt a little bit lighter. And then it all disappeared. I wanted TMS to work so badly. I told the techs about my concerns from the start and when I got around to treatment 28 they suggested that I try dTMS. So it’s the same thing as TMS but it goes deeper into the brain and is a little more intense. The machine is called Brainsway. Maybe you could ask your doctor about this? It may work better for you since you did see a slight benefit from TMS. I should be starting (hopefully if insurance all works out) around mid April. I will keep you updated if this is something that interest you and you may want to try.March 21, 2019 at 11:03 pm #34012
yes that’s how i felt throughout my initial treatment! it sucks being so young and wanting so badly to be able to do the things your friends are doing but not being able to fit in just right. i’ve read some horror stories about brainsway and their success rate is a lot lower than neurostar. i’m hoping this next 36 sessions cures me. the psychiatrist they have at my place has been working on TMS for 12 years and is using it to cure alheimerzers and migraines and he said 70% of people that do neurostar TMS feel relief after 36 sessions, and of those that it didn’t help that do another 36 sessions, 70% of them feel relief. im not 100% sure where he got those stats but he’s really knowledgeable about TMS so i’m hoping it’s true. i hope in your last few sessions it works completely and your depression goes away because i know how much it sucks! what i say is “if not this, then something else” meaning if this doesn’t work something else will.August 15, 2019 at 11:00 pm #34305
Hi. I’m new here and although I haven’t finished my first round (I had #18 today) I am already bracing myself for a second round since I’m not feeling better. I had 3 days the first week where I DEFINITELY felt an improvement. I had a bad weekend, and the depression returned and hasn’t abated again. I am 66 years old, have dealt with depression all of my life treated with medications that didn’t seem to work, or I became tolerant to. I dread thinking that this is it, this is how I’ll spend the rest of the days I have left. I’m terrified this won’t work… and I don’t have any money. So if insurance doesn’t cover the treatments, I’m out of hope.
I’ve said an awful lot to ask how many have had a failed first attempt become a successful second round of treatments. I’m looking for hope at all costs!
Thank you for your responses.August 17, 2019 at 12:28 am #34308
@leavesandpetals, I didn’t have mine work until 36 through 46. My psychiatrist saw some improvement so was able to get 10 additional treatments added, which finally worked. I will add that after 8 weeks I had to go back in for additional boosters. Maybe you just need more on the first round.
I’m planning on doing a second round to see if I can go further between treatments. Good luck! Keep in mind there are other treatments on the horizon, like Psylocibin or possibly look into Ketamine if this isn’t your ticket out of hell.August 27, 2019 at 8:47 pm #34323
@fatigueanddepressed, How’d you end up? I’m about to do another round to make it last longer.
Hope you’re still well!August 28, 2019 at 11:08 pm #34324
Hi Junebeatle. Thank you for writing.
I finished my first course of treatments last Friday. At some point I was doing fantastic, but as I continued the treatments the depression started to rear it’s ugly head again. Not nearly as bad, but nonetheless, it’s there and I struggle primarily late afternoons and early evenings.
They told me I had to wait for my follow up visit in two weeks to determine whether they will get insurance approval for more sessions.
I’m not waking up dreading the day like I was before. Mornings tend to be good. I do have a lot of anxiety that TMS did not seem to help.
My psychiatrist put me on Rexalti and I just started taking it yesterday. I’m afraid of it’s side effects… we’ll see.
When are you going in for the new round of treatments? How many do you think you will receive?
I wish you the very best and that it succeeds in reducing your need for continuous treatments. I would love to hear back from you.
God bless you,
Leaves and PetalsAugust 28, 2019 at 11:28 pm #34325
My 90 day waiting period is up August 30th where they will request additional round of 36. My psychiatrist said doing another round should allow a longer recovery period. I hear ya on the anxiety, I’ve had OCD/anxiety forever but was very functional. Last year April 2018 my anxiety went to a whole new level, along with various muscle fascillations all over my body that would even wake me up. I ended up on Valium in November…TMS cut my dose in half, but I’d rather not take it at all as it makes me so fatigued and impairs my memory. Gotta be functional though, good luck on the Rexulti. I hear when it works it’s incredible, but can also make some types of anxiety more intense so keep an eye on how your feeling.
Maybe you’ll still receive benefits post-treatment! I know these last 5 boosters I’ve had I’ve made me be able to organize again….something I still couldn’t do after the 46. Once the depression cleared I was able to work with my other doctors and get further along, like I’m deficient in Vitamin D, low in b12, and low iodine-those have helped additionally. Also my OB found I had low testosterone and got a pellet in my hip and that made another huge difference. I didn’t realize testosterone impacts women’s ability to make Serotonin & dopamine. My point being maybe look into other things that may also help your brain/mood health. I wish you continued success in managing this difficult illness ❤️November 11, 2019 at 10:11 pm #34415
@junebeatle – May I ask you a question? My motor threshold changed by over 20% halfway through due to medication. However, now insurance is about to run out. Did you say the additional round of 36 helped you?November 12, 2019 at 10:24 am #34418
Yes, they did. They made the treatment last longer this time and I didn’t need the full 36. Even though my insurance approved an additional 36, I only needed an additional 15 (and my doctor said I could use the rest for boosters if I should need them again)
At this point I’ve had a total of 66 left & right sided treatments. I’m back to working part-time and taking great care of my 3 boys. I still struggle with a lot of fatigue, but the rest of the depression symptoms are gone. Good luck and definitely have your insurance either add additional treatments now during the current course or wait the time frame between and do another round.
I did both had 10 additional added in initial 36 for total of 46 since I had improvement, but not enough. And then waited the 90 days my insurance required and went for additional round.November 17, 2019 at 9:32 pm #34420
Thank you, as always for your help. Im so happy to hear you can show up for your boys again!
My doctor’s office asked my insurance for 10 additional sessions for me, but I got twice denied. They are going to try a final time for an “expedited appeal,” but we don’t know how long that may take.
Because I showed some improvement throughout my initial round of 36, perhaps I should just wait and do another whole round. I’ve heard other people have to wait an arbitrary 90 days, next calendar year, etc.
It’s so upsetting because I feel TMS will work for me, but I cannot afford to pay out of pocket.
Thanks again for sharing your hopeful experiences.April 12, 2020 at 10:56 pm #34448
Hi everyone. It’s crazy to think it’s been a year since I wrote my original post… I’m so sorry i haven’t updated anyone since. I honestly had forgotten about this forum because my email didn’t send me the notifications. For a short answer on if the second round worked: yes. I’m still on vyvanse (40 mg in the morning and another 20 mg at 12 pm) and i also take lorazepam for anxiety when needed. I’m going to make a new thread going into more detail on my experience and how i’ve been doing. I hope to hear back from you all to see how you’re doing. Love to all and stay safe.May 25, 2020 at 1:20 am #41862
Would really love to hear how you have done a year out! Thanks for sharing!May 25, 2020 at 1:46 pm #41864
@funmatt26, It’s been a good year for me since my 2nd treatment. I stayed in remission since it ended. I’ve just started back into a running program and am enjoying life with my kids. It helped both my anxiety & depression, I highly recommend it from my experience. Wish you the best of luck! I failed all med trials (with a few ER visits from horrendous side effects) the 6 months prior to TMS. Any questions I’m happy to answer.July 5, 2020 at 3:05 pm #43399
did the first round not work or make you worse?July 5, 2020 at 6:57 pm #43401
The first round worked, but didn’t last. That’s why I needed a 2nd round, I’ve stayed in remission since.July 7, 2020 at 11:39 am #43402
It’s been a year since I wrote here. Sorry I didn’t keep in touch.
There was a period during my treatment I (first round) where I felt myself getting much worse and it scared me. But they told me to continue and it would change for the better once again. That’s exactly what happened with me. I pushed through that period (it was difficult to do so), but then I saw it turn around and the improvement continued until I finished my treatment, at which point the depression was gone.
I had more treatments approved by the insurance, but I felt I should save those for boosters since I can’t afford to pay our of pocket. That was almost a year ago, and I find myself with a need for more treatments since my depression is taking hold of me again. I dread the idea of 36 more treatments since I have to drive almost an hour to the doctors office, get a 22 minutes treatment, and drive another hour to get back home. But it worked the first time, and I’m hoping after this series I’ll remain in remission for longer. In addition, I’m hoping I get get counseling during this time, something I haven’t done in years and that was with a counselor that seriously crossed boundaries, which harmed me a lot. I believe due to the COVID this time it will be through telehealth,
Has anyone else had a similar experience? Please let e know.July 10, 2020 at 3:16 am #43406
hi all. i promised an update awhile ago but life had other plans. i continued that second round of 36 treatments until around mid august of 2019 and felt better. i was able to listen to music again. i felt old quirks and hobbies coming back. it felt like i’d come back from the dead. from august to december i was doing very well. i had a few rough spots but nothing major. i only started to decline mentally when i went on birth control (taytulla) in december. it made me feel like i was going crazy and i bled for three months straight. coming off of that i was diagnosed with PMDD. I’ve been struggling again recently but it’s been mostly situational and i’ve handled it much better than i would’ve a year ago. I’d be interested in possibly doing more rounds of TMS some day but right now i’m focused on treating my hormonal imbalance and seeing if that fixes some things. i hope that everything is well with you all and hope to hear of more progress!
The topic ‘HELP! Second Round of TMS after failure’ is closed to new replies.