Treatment Resistant Major Depressive Disorder: I am proof that there is hope.

[jnelson66]

I have been horrifically plagued by MDD for over a decade. In my journey I have tried literally every therapy and intervention possible including multiple medications, every psychotherapy possible, residential treatment programs, partial hospitalization plans, intensive outreach programs, TMS, ECT, ketamine etc. You name it I have done it. Nothing worked.

The only positive of that is I was able to get into a clinical trial for Deep Brain Stimulation. I had the brain surgery this last August 2022. The device was turned on the next day. I have been in remission from depression ever since. My two primary symptoms were constant suicidal ideation (no intent) and it also physically ravaged my body. I called it poison circulating all throughout me at all times. I had a very physical depression. Just constant feelings of death and lethargy at all times. Both of those are literally completely gone. I am proof MDD is a brain disease. Two parts of my brain weren’t functioning properly. I have constant electrical pulses sent to those two sections of my brain (controlled by a pacemaker) and I am disease free overnight.

I post this here to let you know THERE IS HOPE. I know it doesn’t feel like it. I am very lucky to be alive. But I kept grasping at straws. It paid off fortunately.

DBS is FDA approved for multiple conditions such as epilepsy and Parkinson’s. The surgical procedure is tried and true. It’s not new. The scientists have been spending decades trying to figure out specifically in the brain where the electrodes need to be placed to help with MDD. They are at the point of success. The goal will be to get this FDA approved for MDD. I was the 7th person to get the procedure in this study. I’ve been told hopefully within 2-3 years this may get FDA approval.

To learn more about the procedure watch this. It’s what has been done to my brain.

youtu.be/KwHFHV9Jfd8(Not working as expected?)

Hang in there. I hope you will be able to find relief sooner than later.

Jon

[Dolphin14]

jnelson66

Persistence and determination... you have such strength.

I'm sorry to read how difficult it was for you to get your depression under control. Despite standard treatments not working you continued to push for your quality of life. That's our job. No one else can do this for us.

Your message of hope to others is certainly welcome. Hope gives us the drive to live.

Thank you for your powerful message

🐬

[jnelson66 in reply to Dolphin14]

thanks you so much for your kind note. I hope you are able to find some more relief soon

[jnelson66]

I appreciate your kindness ❤️

[LifeIsThePitts]

Hi jnelson. I've also done everything you've done....with the exception of deep brain stimulation. I've read about it extensively. Im almost 1 year post TMS treatment. I've had 2 setbacks after the original series ended last April. 3 more maintenance weeks in September and 2 days of 10 sessions 2 wks ago. I've done Ketamine, Psilocybin, antidepressants, off label alternatives, talk therapy...the only thing that has helped me is TMS. I'm starting a monthly protocol Feb 14 so I don't regress back to debilitating and crippling symptoms. I'm happy about my results but I pay for everything out of pocket due to insurance not covering treatment. $8700 in 11 months is a big bill.

I'm in the US, I live in Nevada and wonder where you were approved for the deep brain implant trial. I'd love to get more info and testimony of your results. If you have time to share I'd be grateful. Thanks for posting about this awesome treatment option. We need more choices like this one for TRD sufferers.❣️

[jnelson66 in reply to LifeIsThePitts]

send me an email with your availability next week I’ll send u a zoom invite. Look forward to talking. So sorry to hear about your difficult journey with this disease.

[e-mail]

[LifeIsThePitts in reply to jnelson66]

I've got the 😷🤧 flu and haven't forgotten about getting in touch with you. I will email you when I get over this incessant coughing. Talking with anyone right now is futile. My brain is on hiatus in the sick ward and I need to be cognizant when discussing DBS.

[Swoody61 in reply to jnelson66]

Hello,

Your story has given me some hope. Medications don’t work, Talk therapy doesn’t help, I can’t afford to take off work for TMS therapy. I just completed Ketamine IV fusions and was only able to have those treatments due to a grant they offered that paid for most of it. It did help me come out of my fog but I’m still not all there and won’t be able to afford maintenance. Is there information you could send to me regarding how I may be able to try the Deep Brain Stimulation?

Thank you 😊

[jnelson66 in reply to Swoody61]

sorry you are continuing to struggle. Sounds like treatment resistant depression to a T. Where do you live? There are two that I know of that are doing the deep brain stimulation surgery as part of the clinical trials. New York City and Texas. You have to be able to commute to and from the hospital a bunch. I was there prob 30 times over a 8 month period for example. So proximity is key for these clinical trials. Look into the psychedelic clinical trials too. Just keep on trying. Don’t give up

[Swoody61 in reply to jnelson66]

Thank you for responding. I’m in PA so that’s out of the question for me.

[jnelson66 in reply to Swoody61]

I’m in PA too suburbs of Philly so just depends where you are…

[RobSky in reply to Swoody61]

Hi Swoody61,

Can you share how or where I could apply for grants to treat TRD? I've also have tried everything with exception of DBS. I feel this might be my last hope from the ravages TRD has taken on me and my family that is remarkable still in tacked but barely holding on.

[jnelson66 in reply to RobSky]

Mt Sinai hospital NYC. Good luck. When you contact them just state you are a TRD patient interested in participating in the DBS clinical trial. They also have a TRD program there too which may be starting point. Mt Sinai West is the location for everything I did. Good luck. Hope you find relief soon.

[Existing in reply to LifeIsThePitts]

Thank you for a 2nd confirmation of this treatment with TMS. Unfortunately (or fortunately) you prepared me for the sticker price shock. I'm in New Mexico, and want to check into it. I thought Medicare might cover, but I will post what I find out about it here. Thanks.

[LifeIsThePitts]

I watched the YouTube ted talk. It's incredible the advances that have been made. Thanks for posting it.

[jnelson66 in reply to LifeIsThePitts]

absolutely. There is another means of hope to come in the future. Fingers crossed this will be a more widely available treatment option for others sooner than later

[primrose81]

Very interesting TED talk, thank you for this and good luck with your treatment jnelson66.

[Sadbuthopeful]

thanks jnelson66. I’m glad things are better for you, and hearing your story has given me hope.

[jnelson66]

they told me two years would be anticipated time frame if all works out. There have been 11 patients so far in my trial. They have told me 10 have received positive results. I was the fastest (literally over night) others it has slowly started working for them over a range from a couple of weeks to a couple of months. The first patient it didn’t work for. Proof on how effective it is for me. As part of the trial they turn it off at 6 months for a week (it’s the “sham” potion of the trial where they collect tons of data. I plummeted disease wise. They turned it back on and I’m slowly getting back to baseline. It’s been a wild ride

[jnelson66]

I don’t believe any clinical trials charge to participate. I think it’s the reverse. I am getting compensated 250 bucks to be part of a depression biomarkers study they r doing with treatment resistant depression folks where they do a spinal tap on me. It takes 15 minutes. I did some blood draws and urine samples for another one and it paid 75 bucks. All of these happened while I was already there for DBS so it took zero effort. I would do them for free as way to give back though. Whatever I can do to stop the suffering for others after DBS.

For DBS clinical trial. Any pre op stuff they could bill through insurance they did and I had ti do co pays. They tried to get the surgery covered by insurance but it’s not FDA approved so it was denied. The study grant from the NIH covered the surgery. I get reimbursed 500 bucks for travel expenses. Mine far surpassed that but 500 bucks is 500 bucks so I provided receipts to cover that. All in Im probably out 1-2 grand range and a wild amount of time at the hospital (and commuting…im 2.5 hours away door to door) but worth every single penny obviously due to the results.

[sopita]

Thank you!

[MDDstealsitall]

Jon, how lucky you are to have found relief! I've suffered since I was maybe 10 and have contacted the email given re Dr Mayberg's deep brain stimulation. It would be a Godsend like no other if I could also find that relief to this debilitating disease. How are you now?

[jnelson66]

been in remission from depression since 8/23/22. The day after the surgery. Disease free. Life problems and adulting problems still exist. It doesn’t make life perfect obviously but it does take the disease out of the equation which is a huge relief. On clinical trials . Org find Mayberg’s trial and u will see the inclusion criteria. It’s basically u have to have done everything and failed in order to get in over 10 meds, TMS, ECT etc lots of criteria but if u r truly treatment resistant then U can get in

[RobSky in reply to jnelson66]

See, just proofed read my last post and my cognitive decline in writing is starting to be more noticeable in my writing.

[RobSky]

I am so glad you were able to find something that works. I have tried everything you’ve tried w exception to DBS. I have several issues first, I finally got my testosterone to a therapeutic level. The VA and military Retiree medical benefits move very slow. I have managed to survive on 2-4 hrs sleep a night. I put in for DBS clinical trial last night to San Francisco although I am in San Diego. 900 miles away. I feel I’m nearing the end of live. But as a former Marine I can’t give up, although I tried a suicide in past that I barely made it(my poor wife found me) Hopefully I can swing the DBS. I’ve tried TMS last August but wife says I my T was not therapeutic yet so it wouldn’t have worked. I pray for with her his horrible disease. I sometimes even looked up death with dignity but it requires a family or friend to witness my request. Hopefully something will come up to help me.

[Existing in reply to RobSky]

Hi RobSky, I'm with you on all the ways this is killing us all slowly. God, I just wish insurers and Congress could read this thread and see how this is literally a life or death issue with us. The continuous increases in the rate of suicide makes me furious that they keep ignoring the barriers we face to finding relief from effective treatments.

[RobSky in reply to Existing]

Thank you my brother. At least we are not alone

[Existing]

Hi Jon, wondering how you are doing. This is something I might look into, as ketamine and psychedelics will never be an affordable option, and I think insurance might cover the deep brain stimulation.

[jnelson66 in reply to Existing]

so sorry I missed this. Still fully in remission. It’s a literal miracle. Abbott is about to start formal clinical trials to get this FDA approved. They start with end of summer and if positive results then this will be approved. Inclusion criteria for the trial is only 4 failed meds. My clinical trial was fail 10+, TMS and ECT.

[Existing in reply to jnelson66]

Hey, thanks for the update of Hope. I have found that Medicare does cover this, and that it will be available here by the end of the year. I talked to the lady at the clinic where it's offered, and she said she has to do the necessary paperwork and process for Medicare, possibly by September. So, yeah, your reply is good news, and I'm excited to get started. Thanks again.

[jnelson66 in reply to Existing]

amazing. So happy for u. Keep up the fight and keep me informed on the treatment.

[Blel]

so glad you found relief , after many tries and years I found a medication that has been working .

[Existing in reply to Blel]

What medication?

[jnelson66 in reply to Existing]

Only one that ever gave me any benefit was Fetzima. Its reduced my suicidal ideation in half. But that is the one the dart hit for me. Not sure you even meant this for me but that’s my two cents

[mauv]

Jnelson66 I am a 79 yr old female who has had MDD since 21. That is when I started on antidepressants. I became resistant to antidepressants 5 yrs ago. I have been on a lot of them. I tried ECT, TMS and years of working with psychologists. I am going to try Deep TMS which goes deeper and wider into the brain.I havn’t had relief in 5 yrs so I really need it. It this tx doesn’t work I will look into DBS. Maybe next year it will be offered in more locations in CA. This group is a great place to get help because we really understand the debilitating effects this disease has on our body, mind, and spirit.