Treatment resistant depression

Posted by januaryjane @januaryjane, Aug 24 11:07pm

Ive been diagnosed with depression, anxiety, ptsd for over 20 years. I grew up with a lot of trauma and neglect. Ive never done ECT or the ketamine sprays, Im so afraid of them. Ive done a wide array of medications and therapy.
Im so lost right now, I can't seem to thrive, I am disabled because of it.
My mom is having cognitive decline so it's a lot of stress. We have a rocky relationship but she's still my mom.
We are not fighting as much which I like but I am so sad for her and feel helpless. I worry because my dad and brother dont.
So I feel stuck myself.

Not sure what to do when throwing meds at it isn't helping and therapy has me going nowhere right now.

There are very limited resources, no support groups, just AA. Im not sure how to find community, relearn to socialize and find a life for me again.

Should I try something else? Im at a loss

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

Profile picture for meryw @meryw

Yes. My insurance (CDPHP) covers Vraylar.
I’m very worried about you. I hope that you can find something or someone to help you stop this downward spiral.
I’m sorry about your Mom too.
I sometimes hate to admit it, but the truth is that what helped me most with my mother was finding an excellent memory care facility for her. I had to admit to myself that under my and my sister’s care, she was getting worse. She now has professional help 24/7 and the type of care that we could never give her.
I sometimes still feel guilty about not being able to care for her but taking that step was the best decision I ever made. And trust me, she absolutely did not want to go. Lots of crying and screaming and threats of no longer speaking to me. But you know what? She’s happier now. Truly. Calmer, more social and gaining a little weight. Her memory continues to deteriorate but not as fast as it was.
I don’t know where you live but I’m in Upstate New York and it’s starting to get dark a lot earlier here. I think this adversely affects my mood as I too have been feeling more depressed lately. My solution is to make more art and to participate more at my volunteer job.
Please hang on. It always somehow, some way, gets better.

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@meryw thank you so much for your reply! I really needed your kind words. Ive switched therapists and am looking for a support group regarding my mom. She is not bad enough yet to really take any action, so I do what I can but I have no say right now. Sorry about your mother.
I just didn't expect it to happen this soon, whatever it is. She just turned 70.

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Profile picture for marialyce @marialyce

There are support groups that are free. Just google “depression support groups” and a lot of things will pop up including NAMI (national alliance on mental health) connection click on that. You can find free support groups at the local, state level. A lot are online. There are others like Hey Peer as well. You just have to look. Best of luck.

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@marialyce yes I do look. Nami does not have support groups in my area, the resources before covid were scarce and now mostly non existent. Ive tried a few online groups but it's not the same. I will keep trying. Just want to make connections around my community.

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Profile picture for januaryjane @januaryjane

@marialyce yes I do look. Nami does not have support groups in my area, the resources before covid were scarce and now mostly non existent. Ive tried a few online groups but it's not the same. I will keep trying. Just want to make connections around my community.

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@januaryjane Please look up the NAMI chapter in Greenville SC. There are online support groups. I used to attend Monday Family Support by Zoom and also went through the educational classes. Reach out to see if those are still available to people outside of the community. There were participants from out of state when I attended meetings. Look up NAMI Greenville or NAMI Upstate SC. They offer family support and support for those suffering from mental health conditions themselves. "Family Support" and "NAMI Connection". Great group of people.

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Have you considered SAINT therapy (Stanford Accelerated Intelligent Neuromodular Therapy)?
It’s now available in major cities across the US.
I tried it 3 years ago after 15 years of treatment resistant depression. It was still experimental then, but now many insurances cover it. I’ve been depression free for 3 years now.
It consists of 10-15 min TMS sessions per day for 5-10 days, though now there is a 1 day treatment.
It runs around $6500. I paid $32,500, and had to fly to Stanford, so clearly prices have come down.
I had no side effects—I highly recommend it.

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I have also been through long-term depression and misdiagnosis (frontal temporal dementia, psycho phenocopy) that had me taking 21 meds a day for 8 years. I found myself unable to get my medications refilled and ended up off my meds cold turkey for 6 months, leading me to go crazy. Once I made it back home, I could not get in to see my or any other neurologist for another three months. My primary care doctor recommended that I Baker Act myself so they could help level me out. I did. They restarted a couple of my meds and sent me home. I was able to get in to see a Psychiatrist. He thought Ketamine treatments may help with my depression and any lingering side effects from being off the meds.
Ketamine injections are a supervised treatment (in office) and were not covered by medicare insurance. We agreed to try 8 treatments (every other day or two and three times a week). We started at 30 mg and increased to 40 mg. I weigh 200 pounds. This small increase around treatment 5 was so strong that I could not imagine some patients using 300 mg treatments. By treatment 12, I felt my depression was gone, and I started being concerned about getting addicted. Doc thought my remaining issues may be physical. He spoke with my PCP, and they agreed to work together to see what was causing pressure on my head and eyes, migraines, dizziness, and what I described as my mind being scrambled (not foggy or cloudy).
I was still months away from a neurologist appointment. So, My. PCP said he could order an MRI of my brain... Results came back showing I had a Vestibular Schwannoma (a non-cancerous tumor at my left ear nerve). We agreed to suspend treatments for now. (I have had no withdrawal issues from just stopping treatments.). Now we are on a whole different adventure. But not depressed!

I guess where I am going with this discussion is about your concerns with Ketamine treatments.
They say ketamine disconnects your receptors in your brain, and as the ketamine wears off, everything re-aliens or connects back where they are supposed to connect. It is a trip. The Ketamine takes effect fast. You are not supposed to fight it. Just let your mind go wherever it takes you. I would always pay attention to the corner of the room. It would show multiple visions (like double vision, but 4, 5, or 6) and thoughts of so many different realities at the same time, seemingly dependent on how a word used to describe the moment was used (or defined) in your thoughts. It is a super spaced-out experience. It somehow puts life in perspective. Opens you up to possibilities and other solutions available in everything. You don't have to be stuck. It worked for me.

It is not for everyone. It was described to me when I asked if it was addictive. The answer was "no more than Alchahal." I like Bourbon now and then, and I enjoy a glass of red wine a few times a month. I have never had the addiction. Anyway, I stayed keen on any sign I may be "needing " Ketamine.

On the negative side, Ketamine does raise your blood pressure very high for 4 to 6 hours while it is in your system. It will make you need to urinate... so pee before you get dosed. Ketamine felt very hard on my body. The day after, I felt like all my organs had been beaten up... sore.

For me, it was worth the discomfort.

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Profile picture for davidvictordavid @davidvictordavid

I have also been through long-term depression and misdiagnosis (frontal temporal dementia, psycho phenocopy) that had me taking 21 meds a day for 8 years. I found myself unable to get my medications refilled and ended up off my meds cold turkey for 6 months, leading me to go crazy. Once I made it back home, I could not get in to see my or any other neurologist for another three months. My primary care doctor recommended that I Baker Act myself so they could help level me out. I did. They restarted a couple of my meds and sent me home. I was able to get in to see a Psychiatrist. He thought Ketamine treatments may help with my depression and any lingering side effects from being off the meds.
Ketamine injections are a supervised treatment (in office) and were not covered by medicare insurance. We agreed to try 8 treatments (every other day or two and three times a week). We started at 30 mg and increased to 40 mg. I weigh 200 pounds. This small increase around treatment 5 was so strong that I could not imagine some patients using 300 mg treatments. By treatment 12, I felt my depression was gone, and I started being concerned about getting addicted. Doc thought my remaining issues may be physical. He spoke with my PCP, and they agreed to work together to see what was causing pressure on my head and eyes, migraines, dizziness, and what I described as my mind being scrambled (not foggy or cloudy).
I was still months away from a neurologist appointment. So, My. PCP said he could order an MRI of my brain... Results came back showing I had a Vestibular Schwannoma (a non-cancerous tumor at my left ear nerve). We agreed to suspend treatments for now. (I have had no withdrawal issues from just stopping treatments.). Now we are on a whole different adventure. But not depressed!

I guess where I am going with this discussion is about your concerns with Ketamine treatments.
They say ketamine disconnects your receptors in your brain, and as the ketamine wears off, everything re-aliens or connects back where they are supposed to connect. It is a trip. The Ketamine takes effect fast. You are not supposed to fight it. Just let your mind go wherever it takes you. I would always pay attention to the corner of the room. It would show multiple visions (like double vision, but 4, 5, or 6) and thoughts of so many different realities at the same time, seemingly dependent on how a word used to describe the moment was used (or defined) in your thoughts. It is a super spaced-out experience. It somehow puts life in perspective. Opens you up to possibilities and other solutions available in everything. You don't have to be stuck. It worked for me.

It is not for everyone. It was described to me when I asked if it was addictive. The answer was "no more than Alchahal." I like Bourbon now and then, and I enjoy a glass of red wine a few times a month. I have never had the addiction. Anyway, I stayed keen on any sign I may be "needing " Ketamine.

On the negative side, Ketamine does raise your blood pressure very high for 4 to 6 hours while it is in your system. It will make you need to urinate... so pee before you get dosed. Ketamine felt very hard on my body. The day after, I felt like all my organs had been beaten up... sore.

For me, it was worth the discomfort.

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@davidvictordavid I forgot to add: YouTube short had me question my amlodapine blood pressure medication, so after discussing it with my PCP, I stopped taking it for a trial. Two days off of it, my mind cleared and I have been thinking clearly ever since. 🙂

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I could have written what you wrote, including the rocky relationship with deteriorating mother who I love. They are trying to push TMS and Ketamine on me and I am scared to death to do either. Meds just don't work even though I'm on a bunch. I'm afraid they'll drop me if I don't do what they want. I have severe anxiety/panic disorder, depression and si. I sympathize with you. It's not a life at all.

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I so understand and empathize. I remember being depressed as young as three or four years old. I grew up in a very dysfunctional family with ignorant parents lots of fighting yelling cursing and telling me they hated me and they wished I would die. I am now 76 years old and continue to battle debilitating depression some days I just feel like I could just close my eyes and never wake up living like this is no kind of a life. I felt happy when I married my second husband, but after 25 years of marriage, he died of cancer. He was so young and he was such a great man. I don’t know what to do.

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Profile picture for iamunwell @iamunwell

I could have written what you wrote, including the rocky relationship with deteriorating mother who I love. They are trying to push TMS and Ketamine on me and I am scared to death to do either. Meds just don't work even though I'm on a bunch. I'm afraid they'll drop me if I don't do what they want. I have severe anxiety/panic disorder, depression and si. I sympathize with you. It's not a life at all.

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I forgot to mention I tried TMS twice. It did absolutely nothing. Doctor then insisted on ECT. I’ve read everything about it and refused then finally stopped seeing this Psychiatrist.
Did anyone see A Clockwork Orange???

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