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.

Interested in more discussions like this? Go to the Mental Health Support Group.

Robbie, I’m Kay. My 14 year old daughter is displaying the same unmotivated, uncaring behaviors. I’m so sorry you’re going through this. As a parent, it breaks my heart that you, and others, feel this way. Have you told your parents how you’re feeling, you sound like you’re in the verge on attempting again. Please call or text the 988 Suicide & Crisis Lifeline https://988lifeline.org to talk to them and see what they say. Their number is 988. If you don’t want to talk to them, please call your counselor, psychiatrist, or the hospital. I’m praying for you!

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Robbie I too have had depression all my life and I am 67 now. Unfortunately life is not easy, but I am living proof you can make it through. Actually you may be coming to a better time in your life. If your depression is related to your brain not working to get you feeling good at times, then your brain may work better without the strain of growth and when your brain reaches it's full growth. Your brain develops until age 30 so you still have time to get better. Have you tried therapy? Studies show therapy with antidepressants works the best. Even if you don't have issues that caused the depression, therapy can help you deal with the depression by finding ways to cope with it. I am resistant too. The doctors at Mayo have concluded that if you have tried a number of antidepressants and they do not work, you may need a very large dosage. I take about 4 times the normal dosage. A genetic test can show if some antidepressants do not work with your genes and what they are. Otherwise trial and error works too. If you have tried something at a high dosage and it does not work, then it probably means it will not work for you. Have you tried different doctors? Another doctor may have a different idea of what to do. Be aware that Klonopin can cause depression and tiredness as side effects. I was much better without it. Do not stop any medicine without talking with your doctor and getting his approval.
Please know that I am here with you on this. It is not easy, but it is possible to get through. We are all here with you to let you know we care and are ready to talk with you about your depression. I am praying for you too.

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@tricks- Hi Robbie- My heart aches for you for all you have and are going through! No wonder that you are discouraged- anyone would be !
Have you undergone genetic testing for psychiatric medications? If not I would suggest you do that. Also I would try the Ketamine and then if necessary the ECT. It seems theses treatments have helped some people who have not had success with others. Don't give up there is still hope!
Best wishes
Ainsleigh

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@kaybird

Robbie, I’m Kay. My 14 year old daughter is displaying the same unmotivated, uncaring behaviors. I’m so sorry you’re going through this. As a parent, it breaks my heart that you, and others, feel this way. Have you told your parents how you’re feeling, you sound like you’re in the verge on attempting again. Please call or text the 988 Suicide & Crisis Lifeline https://988lifeline.org to talk to them and see what they say. Their number is 988. If you don’t want to talk to them, please call your counselor, psychiatrist, or the hospital. I’m praying for you!

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Hi, yes, my parents are aware as I still live with them. They're starting to see how severe this is getting and I know my mother is very worried, it's been going on to a degree since I was 7 years old. All these treatments are so expensive, I feel bad putting my parents and friends through all of this, and feel the least I could do is try and stay alive a little bit longer for them, and try these "last resort" (at least it feels like they are) treatments. Thank you very much for your response, I appreciate the support right now more than ever.

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@johnhans

Robbie I too have had depression all my life and I am 67 now. Unfortunately life is not easy, but I am living proof you can make it through. Actually you may be coming to a better time in your life. If your depression is related to your brain not working to get you feeling good at times, then your brain may work better without the strain of growth and when your brain reaches it's full growth. Your brain develops until age 30 so you still have time to get better. Have you tried therapy? Studies show therapy with antidepressants works the best. Even if you don't have issues that caused the depression, therapy can help you deal with the depression by finding ways to cope with it. I am resistant too. The doctors at Mayo have concluded that if you have tried a number of antidepressants and they do not work, you may need a very large dosage. I take about 4 times the normal dosage. A genetic test can show if some antidepressants do not work with your genes and what they are. Otherwise trial and error works too. If you have tried something at a high dosage and it does not work, then it probably means it will not work for you. Have you tried different doctors? Another doctor may have a different idea of what to do. Be aware that Klonopin can cause depression and tiredness as side effects. I was much better without it. Do not stop any medicine without talking with your doctor and getting his approval.
Please know that I am here with you on this. It is not easy, but it is possible to get through. We are all here with you to let you know we care and are ready to talk with you about your depression. I am praying for you too.

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Thank you for this.
It's just hard when it feels like I've been trying to cope with SOMETHING every single second of every day since...my whole life. I have PTSD (likely c-ptsd) as well, which started from various reasons in my environment from a very very young age (< 3yrs).

The thing with medications is complicated too because they aren't sure whether I have bipolar or not, my episodes are very very unpredictable and don't necessarily always fit into the criteria. Antidepressants cause manic episodes, but I am currently on a mood stabilizer for that and an average dose of Zoloft. I have seen many many therapists and psychiatrists for over a decade. I did do genetic testing a while back, but there were some issues involved and my current psychiatrist wants me to redo it, which I hopefully will soon and get some conclusive results.

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@ainsleigh

@tricks- Hi Robbie- My heart aches for you for all you have and are going through! No wonder that you are discouraged- anyone would be !
Have you undergone genetic testing for psychiatric medications? If not I would suggest you do that. Also I would try the Ketamine and then if necessary the ECT. It seems theses treatments have helped some people who have not had success with others. Don't give up there is still hope!
Best wishes
Ainsleigh

Jump to this post

Thank you very much Ainsleigh (love that name by the way!). I did do genetic testing but something went wrong with my results I think, I can't remember, so I'm most likely going to redo that as well as try out ketamine therapy and, if that doesn't work, then ECT.

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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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@tricks Welcome to Mayo Clinic Connect. We truly are glad you found us, and we extend a helping hand attached to shoulders to lean on! I hope the genetic testing will give you and your doctor better insight to help solve issues. Remember, you are posting here, and that alone shows great promise. Remember that! Can you contact a nearby chapter of NAMI [Nat'l Assn for Mental Illness] for tapping their resources and help? When you state things are sporatic, keep a journal detailing the symptoms [time/day/what you're going thru]. Many times the act of releasing the power of the symptoms, by getting rid of them in writing, will help. Keep talking to us! Can you do that?
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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@tricks- Yes- my Grandson took the genetic test.It indicated he was on the wrong medication .His doctor weaned him off and put him on one in the category the test indicated was good for him.
Hang in there!
Best wishes
Ainsleigh

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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).

Jump to this post

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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