I'm evidently very treatment resistant, any hope?

Posted by tricks @tricks, May 9, 2019

Hi. I’m Robbie, I’m 19 years old and I have been struggling with a plethora of mental health issues seemingly my whole life (yes, when I was a very small child as well).

I’ve been hospitalized (inpatient, suicide watch) 7 times in one year during the 6th grade. I’ve seen over 6 different therapists, 4 different psychiatrists, been to outpatient programs more times than I can count or even remember, even up until recently. I also have physical health issues that are severe (IBS and another GI disorder they’re trying to figure out, and can’t, despite the ridiculous amounts of tests I’ve done this year). I’m always fatigued and always feel a dull ache. These health issues worsen my unaddressed eating disorder as well as my depression and anxiety.

I could really go on and on. But the point is, I dont know what to do anymore. I’ve seen so many therapists my whole life and as the years go by things just seem to keep getting worse and worse. So, so much worse. I’ve been on a million different meds, tried so many different therapies. Right now, ketamine treatments or ECT are the only two options any of my docs can think of that might help because I am so treatment-resistant (evidently). Although I do my best to exercise, expose myself with anxiety, practice healthy coping tools, I’ve developed a dependence on a few drugs (kratom, Adderall, and Klonopin. the former two are prescribed to me, and kratom I can legally buy OTC where I live). I feel like it’s the only way I can get through every day, and at night time it’s even worse. I have no passion, no motivation, no matter how much effort I put into trying to change things and cope with things. It’s EXHAUSTING. and expensive. I’m exhausted, and my friends don’t understand the severity, I feel isolated and alone. No amount of support groups seems to help that. They only make me more sad, sometimes. My parents are unhappy, my partner (who lives with me) also struggles with depression and anxiety. The whole world seems so unhappy.

Lately, I’ve been terrified there is no fixing any of this. Trust me, I’ve researched and looked into so many things. It’s not like I don’t have plenty of resources at my disposal. So I’m at a loss. I’m not living for myself, I’m only still here out of guilt, because if I ended my life it would hurt those who care about me and depend on me. But I’m just getting too tired. There is no hope or optimism. My doctors haven’t said it out right, but I think they’re losing optimism, too. I don’t know how much longer I can do this; how much energy I have to keep going. I can’t even rely on myself or be as independent as I like, such as holding a job for more than a month or consistently attending classes — I even dropped out of high school and am supposed to be working towards my GED. My plan is to become an EMT. That is, if I make it that far in life. Envisioning my future has always been hard and it now feels impossible to see a realistic, even short-term future.

I didn’t know if anyone had any words of wisdom or experience with this, whether personal or if you’re a caregiver of someone struggling in similar ways. Anything would be appreciated, but I’m not entirely sure what I’m doing here.

@scrollsbc

I am 52 years old and have complex P.T.S.D. and childhood trauma and have been told i have bipolar by some and that i don’t by others. I was in the military and have gotten my 4 year degree. i wanted to strive to be anything but what my family was and some still are. but that being said i lost medication that did work due to my husband losing his job and have been on a roller coaster of generics to find what works. apparently i am in the class of people that generics throw them all over the place mentally. so i just winged off everything and yes it can be done slow process but i was frustrated and angry from growing up with both to now having my world turned upside down again. i am tired warn out and have had all i can take of life and myself at times. but i have experienced being off and trying other alternative means from herbs to amino acids you name it i tried it. but i know i need to be on something because nothing i have done works without its own set of long term problems. so i am bound and determined to make this square peg in my life fit this round hole. I have been through mental heal this past year and with my family that’s still living. i cry most of the time grieving what i will never experience with a mother or father on a love, caring compassion supported level and i will probably grieve it till i die. but i’ll be &#$’l if they are going to win. I have an inner light that guides me and keeps me fighting to the bitter end whenever that may be. but i have lost pretty much everything u cannot buy, and some that can be bought, but i persevere. i will find what works for me even if it isn’t perfect because i’m worth it. Even though i was brought up thinking i wasn’t, i hope this helps in some way, because i totally get what you are saying i have been through med hell. the thing is you are on here talking and sharing and people are listening and replying that’s freaking awesome in itself that you are worth listening too. you matter, people love you in your family. i hope something i have shared helps you.

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@scrollsbc Good morning and welcome to Mayo Clinic Connect. We're glad you found us. First off, thank you for your service. Your response is a breath of fresh air, to hear how you continue to overcome your past. We each have our own journey, and finding just the right combination to winning can be tiring, and difficult. Like you said, "don't give up". I am encouraged to hear your positivity, as it really hits home for me personally this morning. You are absolutely right, we are worth it, and we matter! Here's a cup of coffee/tea/hot chocolate raised in toast to all of us on this incredible journey, grieving what cannot be replaced but determined to make our lives the best we can.
Ginger

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@colleenyoung

Hi @tricks, I want to add my welcome as well. Have you heard of OK2Talk https://ok2talk.org It is a website by NAMI for teens and young adults. Don't get me wrong. I'm not trying to send you somewhere else, but I thought you might want to know about it. I'm glad you're here, especially to hear stories like @johnhans, who has lived with mental health all his life. He, too, was 19 once and is here to tell you about at 67.
Who is the dog in your profile picture? She looks so alert, curious and ready to play. I say "she", but I of course don't know her gender. Is she your dog?

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Hi, thank you for the resource!
And yes, that is my dog, Dexter. He is very alert, curious and always ready to play, haha

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Hello! @tricks, Robbie, Welcome! I am a bit late getting into this conversation, but better late than never, right?

My beloved father would say "Better never late!!!" How I miss that man. He died a long time ago. 1976. I am five years older than he was when he passed away. But you know something really neat, Robbie? The people who are meant to find each other usually do. You and I are poles apart. Yet we have so very much in common.

I almost hesitate to even speak of the similarities. Can we just say that almost from the time I first arrived on the planet, I was overwhelmed with depression. I had plans to run away from home before I could even read. I knew how I was going to kill myself even as I watched the original Mickey Mouse Club on our black and white TV.

My father was my angel sent from Heaven.
My mother was a very unhappy survivor of childhood abuse, and did not want to be a mother.
I learned early on to mask, to lie, to minimize my own needs and dismiss whatever was going on with me to help my mother.
I was misdiagnosed all my life. One of the finest Psychiatrists in all history told me that she couldn't figure out if I was Bi-Polar or ADHD. She honestly did not know what to do for me.

Neither did I. I double majored in Psychology and Sociology in college, because I wanted to know everything I could to help myself and to understand my clan of "high strung" relatives.

Fast forward to my original point: We find each other. If we are lucky. We find the members of our "tribe"….the ones who have been through the same kinds of things, and survived. We help each other, we listen to each other, we encourage each other. We find ways not only to survive, but to thrive.

I cannot give you all the answers that I found for myself in one " fell swoop."

That would be too long, and too overwhelming, and that would be adding insult to injury. But bit by bit, if you will bear with me, I would love to share with you some of the roadblocks I have had. And where I am today.

One of the greatest blessings in my life is to have found this group of people called Mayo Clinic Connect. I loved it so much, in fact, that eventually I became a volunteer mentor. I have had many different occupations in my life. This is by far one of my greatest assignments yet.

My teenager says I talk too much.
He's right. I do.
But here's a secret…..I talk so others can speak.

You keep talking. Keep sharing. My friends here at the Connect Table are waiting for you. Joy and peace are not so far away from you as those thoughts inside your head tell you.

God has given me a great love for those who are going through tough times. I may only be words on a screen, but I am real. I exist outside of this space. I survived. You can too.

Love and light to you, my friend.

Mamacita

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Thank you for all the replies. I'm very very appreciative. Things haven't changed a ton, but I am getting a blood panel done and some testing to rule out potential autoimmune diseases or other health problems (malnutrition and/or malabsorption is likely in my case with my GI problems) that could be causing similar symptoms. Hopefully I will find some answers there while I wait for this ketamine treatment center to get back to me. 🤞

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@tricks

Thank you for all the replies. I'm very very appreciative. Things haven't changed a ton, but I am getting a blood panel done and some testing to rule out potential autoimmune diseases or other health problems (malnutrition and/or malabsorption is likely in my case with my GI problems) that could be causing similar symptoms. Hopefully I will find some answers there while I wait for this ketamine treatment center to get back to me. 🤞

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@tricks So good to hear you are getting the bloodwork done. Our body is such a miracle, and we sometimes forget that our body has many different systems all working together. When one gets out of balance, the others also have to compensate in some way. Our goal is to get back in balance, however that may be. Please keep coming back, and let us know what the medical professionals say. We share our experiences together, so that together we survive.
Ginger

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Hey there,@tricks…..So, you have a plan. That is good news. And you may really be on to something very significant in your journey towards healing. Gut health is more and more in the news these days.

I myself am a convert! We take extra vitamin C during really stressful times, and Probiotics every day. We eat more of the "Super Foods" than cheeseburgers and fries. We have seen it make a difference.

Let us know how it goes as you are able to do so. I know you are busy with your studies, as well, and I commend you for that.

Lifelong learning is so much fun! You can never be bored if you have that taste for knowledge. Now, chemistry? That's a whole nuther subject.

See you on the flip side!

Mamacita

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@gingerw

@scrollsbc Good morning and welcome to Mayo Clinic Connect. We're glad you found us. First off, thank you for your service. Your response is a breath of fresh air, to hear how you continue to overcome your past. We each have our own journey, and finding just the right combination to winning can be tiring, and difficult. Like you said, "don't give up". I am encouraged to hear your positivity, as it really hits home for me personally this morning. You are absolutely right, we are worth it, and we matter! Here's a cup of coffee/tea/hot chocolate raised in toast to all of us on this incredible journey, grieving what cannot be replaced but determined to make our lives the best we can.
Ginger

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Thank you, I really appreciate it, it is a hard road to travel alone and no one gets it unless they have been there. I would like to find a physical group trauma in my area but there isn’t one that’s free. so i am seeking places where i fit in because i have learned 12 step programs are not best for people with what i have but others it may be great for them. i am grateful i feel i found a place to be me and i fit, thank you for this

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@scrollsbc

Thank you, I really appreciate it, it is a hard road to travel alone and no one gets it unless they have been there. I would like to find a physical group trauma in my area but there isn’t one that’s free. so i am seeking places where i fit in because i have learned 12 step programs are not best for people with what i have but others it may be great for them. i am grateful i feel i found a place to be me and i fit, thank you for this

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@scrollsbc No one here is a medical professional. We won't/can't give medical advice but we will definitely share our experience, the things we have tried and what have worked or not worked. So pull up a chair here at the Cyber table and we'll scoot over and make room for you! Looking for groups that work for you is always a challenge, isn't it? Not knowing where you are located, you might try veterans organizations or perhaps a large teaching hospital in your area. Another thing perhaps is senior groups that might have some insight. I know, for me sometimes being in groups it becomes one of "can you top this" situations. I found that very discouraging in 12-step groups. While they are very valuable for a lot of people and the group dynamic works for several individuals, that just wasn't for me. I do hope that you will keep coming back here and talking and helping us to understand how to work through issues, just as we can share with you our lives and experiences. We are all cyber friends here and we are all in this together!
Ginger

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@tricks

I am also wondering about genetic testing. Did anyone do that and find meds that suited them or experience any helpful difference in the long run?

The meds I'm currently on (Trileptal, Adderall, Zoloft, Klonopin) seem to be the closest I can get to anything that even slightly helps me, and my whole life has been trial and error with drugs, so I can't imagine there's many left for me to try. It seems like the doctors already have decided I'm just treatment resistant, which I believe I am, and don't feel the genetic testing is all that necessary and are instead looking into the therapies I listed in my original post (ketamine or ECT).

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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!

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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.

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