I'm evidently very treatment resistant, any hope?

Welcome, @tricks ! It’s so good to hear you talking about your situation! Talking is great therapy and it encourages others to talk. Have you spoken with a therapist who can maybe help you find the right path? We’re great listeners on MayoClinicConnect but we’re not certified counselors! Put us all together and we have great ideas, but we’re not medical people either. Keep talking and we’ll keep listening and hopefully, helping!

Since many of you have interacted with @gingerw in this thread and in other discussions on Connect, I thought you'd like to know that this week's Member Spotlight features her. Learn a bit about how she came to Connect and what motivates her to take part in the community, how she finds balance in life, and some of her favorites pastimes https://connect.mayoclinic.org/page/about-connect/newsfeed-post/sharing-caring-and-lending-a-virtual-ear-meet-gingerw/

Please check it out and make a comment.

@johnhans What a thoughtful and helpful response!! @tricks I too want to encourage you that I agree with what @johnhans says about as getting older you’re likely to have it so severely. I hear you though….I also have tried everything (haven’t tried ect or ketamine ) and feel like nothing is going to work

What’s interesting and I’m 53….is the only two meds that def have helped are clonazepam and adderrall.
I’ve been given grief for years though by family members or random people as well as doctors who say I’m a drug addict for taking those two meds.
I do not abuse or misuse them. I always am trying to titrate down . The adderrall def doesn’t have the same effects as it did for first 5 years or so. But it DOES help more than anything else.

I came to this group to ask about others experience with Ketamine bc I’d really like to try it. Im in MS in a small town so no doctors here yet prescribe it . If anyone has any leads to drs who do that are not too far of a drive please let me know.
I don’t know what Kratom is but not interested in trying it . Have you tried TCMS ??? I did it and it seemed to help a little bit in first few weeks but then made anxiety worse.

Pls don’t lose hope!! Have you ever been for psychological testing ?? I so suggest it if not to get a accurate diagnosis !!

Have you tried the TMS therapy, I heard that it’s the last option for resistance

I did Tms and I can’t say it really worked.

My understanding is that TMS is not covered by insurance and therefore unaffordable option.

I've been on 350mg/day Wellbutrin for ages with no discernible help.
Well, except that on the few occasions I've dropped it (cold turkey, quite painlessly FWIW) I noticed after a week or so that I felt a tad worse, so I went back on. Perhaps I should I should go off, if only for the sake of reducing my very lengthy med list! ("Polypharmacy" is a real problem!)

You all may be interested to learn, however, that I've finally managed to win approval to do a trial of buprenorphine (patch form - expensive! 🙁 ). That is, after 20 years of research and waiting for the Psychiatric Industry to come 'round to legalizing it (they did, though it takes much persuasion and open-minded prescribers!).

It probably helped me getting it approved, that I was already taking an opiate, hydrocodone, for chronic pain, and I'll be replacing that opiate with buprenorphine for both pain relief and TRD - treatment resistant depression.

I've long been convinced my brain has too little dopamine (which this will contain) rather than serotonin - the basis of most modern antidepressants. (Undoubtedly why NARDIL, an MAO inhibitor, was so wonderfully effective for me - heartbreaking that I had to discontinue it owing to a side effect which just happened to be harmful for me.

However, wherever the subject arises, I try to make time to call attention to the dopamine hypothesis to treat depression as I feel sure many who suffer from treatment-resistant depression like me need dopamine rather serotonin.

Buprenorphine is only brand new for depression. (especially TRD), though it's still considered somewhat experimental by old school psychiatrists. Has been used mostly for detoxing the opiate dependent (often with naloxone) and also for pain. (Google: buprenorphine, Treatment resistant depression)

That said, there have been many clinical trials of buprenorphine to treat TR, but however effective it is, it hasn't been used largely because of the national opiate hysteria.

There are a great many medications increasing dopamine, but they are for the most part illegal (even VERY illegal! Fill in the blanks, yourselves.). Lately, one other being tried is psilocybin ("Magic mushrooms") used most often in "micro-dosing" and available in kind of spa style administration. (expensive!) or ordered online without prescription. There are MANY clinical trials showing its effectiveness for many, though. And for the daring, Ayahuasca also dispensed in other religious spa experiences (quasi religious for the doubters) , also very expensive - likewise, in Peruvian retreats, some more "authentic" than others (the ones that aren't, are carried out largely for and by Americans. These are run quite a lot for profit but perhaps equally effective, if you can tolerate going through what some consider a near-death experience.).

These last compounds are also being tried in clinical trials to treat PTSD and hypothesized as excellent for those near death. LSD and mescaline (among others) are also used therapeutically.

For those who remember, these last substances harken back to the days of Harvard Drs. Richard Alpert (Ram Dass) and Timothy Leary, also among many substances compounded and personally experimented with by maverick chemist, Alexander Shulgin and wife, Anne.

I don’t recommend ect I went through it and changed my life forever but not in a good way.
I have been taking ketamine for around 5 years now for severe depression. It has made my life livable again . I have suffered from depression all my life I am 64 years old now. Keep on fighting for your life it is hard sometimes but you can do this!😊

I grew up with abusive parents. They were unpredictable and violent. I am sixty, so it was called discipline then, but violence is violence whatever we call it.

I was suicidal from my earliest memory. I didn't know it was suicide I thought about, I just didn't want to exist. At six I had a complete breakdown. Audio and visual hallucinations, nightmares, insomnia. I was incapable of functioning.

My parents took me to a number of doctors. No one had any answers. Lots of tests and talking but no progress. After about five or six weeks I was able to get a handle on it, not much of a handle but enough to function. Sometimes the onset of symptoms would start and I would recite a mantra I read in a book "fear is the mind killer, I will look through my fear and all that will be there is me". I used this for years to ward off symptoms. It's from a book called Dune by Frank Herbert. It helped me.

I found that if I was alone I was okay. I feel other peoples feelings intensely, learned later that is empathy. I lived in the country and spent a great deal of time in the woods, days sometimes. School was a nightmare and I did very poorly despite being very bright. More tests more talking.

Around twelve I started drinking alcohol and by sixteen I was a full fledged alcoholic and drug user. Then the sexual abuse started by a teacher and ultimately by a lot of other people. I dropped out of High School. At seventeen I was arrested and sentenced to either treatment or jail time. Luckily I choose treatment.

Six months latter I was clean and sober and going to A.A. and seeing a psychiatrist (back when they did therapy). By twenty five I had my own company and was soon to meet my wife. From then until forty five my life flourished.

All of this leads up to my experience with modern mental health care. At age forty five I went to see a psychiatrist. I was feeling down and depressed or so I thought. I had also gained a tremendous amount of weight. Stopped exercising completely and worked all the time.

I was put on 900mg of Lithium, 450mg of Venlafaxine and 450mg of Bupropion. Over the next five years my wife would leave me and take my children with her. I lost my businesses, my fortune and my freedom.

From age fifty to my sixtieth birthday I would be put on every new drug for depression or bipolar disorder that came out. I would see more doctors than I can remember. I had ECT, nineteen sessions (woke up paralyzed once, that sucked), TMS two months, Ketamine and anything else that I could get a prescription for. In the end I smoked pot, snorted cocaine, smoked crack and drank as much alcohol as I could find, though I had been clean and sober for thirty two years.

I was suicidal everyday of my life.

I vowed I would not turn sixty in the condition I was in. I planned my suicide and made all the arrangements. The only people I care about were my children and ex-wife. But even my love for them would not keep me alive this time. I just couldn't stand anymore pain.

I read a lot and I stumbled across a book. "Brain Energy" by a doctor Palmer. Others on this board are probably sick of me mentioning it. The book changed everything for me.

I decided to try one more time and one more time only.

I radically changed my diet (no refined sugar no ultra processed foods) and started exercising two hours a day six days a week. I began to feel a little better. Then the research started. Here is what I found:

Many of the drugs I was taking caused symptoms similar to the disorders I had alternately been diagnosed with. Did I have major depressive disorder or bipolar disorder. Neither one fit perfectly. I certainly had all the side effects from the medications one would expect me to have. My depression was epic. I was terribly fatigued and my brain was in a constant fog and I had been off drugs an alcohol for ten years.

Long story short, I came to the conclusion that I don't have anything wrong with me. For some reason (probably trauma) I feel my and other peoples feelings intensely. The same conclusion all my docs found from age eighteen to forty five. I did and do have low testosterone, mostly like caused by antidepressants and the drugs I've been taking to deal with side effects.

No one noticed that the symptoms of low testosterone and depression are basically the same. And that antidepressants given to people who don't need them can cause mania. If one has bipolar disorder, watch out.

I have a lot of experience doing research and preparing reports. I prepped a report for my doctors with my findings and my plan for going forward. The report was convincing enough that they are supporting me as I go forward with trying to get healthy mentally and physically.

Three months later I feel the best I have in decades, mentally and physically. I am on four psych meds instead of eight. Of those I still take, the doses are down by two thirds with an eye towards all of them being gone by the end of the year.

It is not all a "cake walk". I still feel intensely, but after fifteen years of being numb it's kind of a pleasure. I have to be careful about who I spend time with. My sleep is messed up as I no longer take sedatives but it is getting better all the time. I am very careful about what I eat. My wife always told me that was a big part of why I was sick. I wish I listened. I cannot go more than a day without getting some form of exercise or I get increasingly down. The two hours a day I spend exercising have become the favorite part of my day. And two out of twenty four doesn't seem like so much anymore.

Perhaps the hardest part is that I now care. Life hurts! It is also filled with joy! I can't have one without the other. I wish I had learned this when I was a child. Ive spent my life trying to get away from my feelings when all along that was life!

This is my story only! I am not suggesting that anyone follow my example. However, I do believe there are lessons to be learned from my experience.

No one, I repeat no one really knows what causes mental illness.
Drugs and alcohol make everything worse (even if my doctors know about it).
Treatment for mental illness is hit or miss.
Psychotherapy works.
Natural sleep is critical.
Exercise works!
Dietary changes work!
Stress reduction works!
The right medication can be a bridge to wellness.
The wrong treatments can be worse than the conditions they are prescribed for.
Physical illnesses often cause symptoms of mental illness.
No one size fits all.
Fifteen minutes with a prescriber who barely knows the patient should be malpractice.
Doctors do not know everything.
One doctor seldom knows what my other doctors are doing.
There are no quick fixes health is ongoing process.
I have to educate myself on anything I put into my body.
I must advocate for myself.
To advocate for myself I have to educate myself.
Reaching out to others makes me feel better.

Seems like a lot to do?

The alternative for me is a life of suffering and hurting others.

If my experience helps then maybe it wasn't all a waste.

My greatest hope is that the pain you and so many others are suffering be lifted. Keep reaching out. Suffering alone is like no other pain.

Be well!