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Hi.

Not sure under which topic I'm supposed to post this, but I'm hoping someone might have some new ideas for what I should do next. Here's the situation: my parents went away on...oh wait, I'm not The Fresh Prince.

Anyway, I have chronic severe treatment resistant depression. I've been treated for it since 2001 and have tried just about every med (at least a good cross section of each type of med) for it, as well as many combos. I've had decent to good results with some, but never longer than a few months before they stop working. And each time I try a previously successful med, the duration becomes shorter and the efficacy lower. 

I have had ECT and unfortunately had the same results as with meds - by the time I was treating only once a week (3 times/wk of uni for a couple wks, then 3 times/wk of bilateral for 4 more wks, then once a week) the effects were lasting less than 24 hours. Also, I was having to drive more than 500 miles round trip to get a treatment, and had to take time off of work for it. The ECT docs & I made the decision to discontinue treatment due to its loss of effectiveness. 

I was able to get into a clinical trial for a "ketamine-type" medication the following year. It seemed to help some, but the trial was only about 20-25 treatments. Side note, I also had to drive another 400 miles round trip (the other direction) and really tweak my work sched to be able to go to the trial 3 times a week. 

After the trial, I tried a few more "new" meds that had come out with no success. The year after the trial, which was last year, my pdoc retired unexpectedly due to his own medical issues. I figured I'd try to just "deal with it" since there are only a few pdocs in my area, even fewer who have anything remotely positive said about them and fewer still who are covered by my "dollar tree" mental health insurance. Sad, but true. But toughing it out really wasn't working for me. 

Since the clinical trial seemed to help, I tried ketamine treatment earlier this year. Once again, no luck. 

As for talk therapy, I really don't see how it makes a dent in my medical condition. Don't get me wrong, I know it can be necessary at times. I've done it before and it was great when I was going through a period of grief. But as far as making my brain start working correctly, it doesn't. 

I also know the lifestyle activities that are supposed to relieve some of the symptoms of depression - exercise, sleep, supplements, etc. But for the love of God, I've voluntarily allowed electricity to be shot through my head just to try to function like a normal person, so eating a handful of blueberries a day isn't gonna cure me. 

Now I'm just tired... Of pretending to be normal.  Of spending every last penny I make on stuff that doesn't work. Of going to work (in hell) just to exist. 

Does anyone know of anything I've missed, that would help? Is there any help out there anywhere? Thanks to anyone who made it through this boring ass, whiny, downer of a post and might have a suggestion...or even a smart ass reply that would put a smile on my face...for a second. 

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Have you tried lithium? How about anticonvulsants and antipsychotics? They sometimes work in treatment refractory cases. I also have treatment resistant depression, and you can see from my signature that I take quite a cocktail daily just to be able to function. My cocktail includes 2 anticonvulsants, 1 antipsychotic, 2 antidepressants, and a stimulant.

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Hey jt07. 

Thanks for the response. Yah, I have tried lithium. I don't know why, but it was kinda horrible for me. I gave it a real try & got the side effects without the benes. I've also tried both anticonvulsants & antipsychotics. The antipsychs helped some but wore off quickly.

I also happen to be that weird "less than 1%" of people who get the random side effect of orthostatic hypotension - my blood pressure drops when standing. So the more meds I take together, the lower it drops. I do take a stimulant to help keep my BP up (as well as get me outta bed) but it only helps a little. 

However, the docs around here, other than my previous pdoc, seem like they don't think anyone should take more than one med at a time. Do you think I should try a pdoc in a bigger city? I hear of people taking cocktails but when I mention to any doc around here that I take a stimulant with an antidepressant, they ask why I'm taking that. Seriously? Shouldn't they know why I'm taking it? 

Again, thanks for the response. It's truly appreciated. 

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My doctor was pretty much that way until I was hospitalized and started on what would become my cocktail. Some meds were added and some were taken away, but pretty much I need an antidepressant + antipsychotic + mood stabilizer. Antidepressants alone don't do a whole lot for me. I lucked out a few years ago when one doctor (a GP no less) put me on Tegretol and said that it helped his sister. I thought he was crazy, but man, it really did help me. When I got to the hospital, they put me back on it.

I think that it might be worth finding a pdoc in a larger city if you've hit a wall with your current pdoc. Have you tried ALL the SSRIs? I'm asking because I tried all of them (except Luvox and some of the newer ones), and I got a response from only Celexa. I don't know what meds you have tried, but the older meds like the tricyclics and the MAOIs are still very good ADs and in some cases will work when the newer ones fail. I personally didn't like the tricyclics because of the side effects, but my aunt swears by Elavil.

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Hey jt07,

I have tried a couple of anti seizure meds (lamictal & gabitril) but don't recall having luck with either of them. Had you tried any before Tegretol? 

I've also tried MAOIs & tricyclics. One of the MAOIs started helping but my blood pressure dropped to about 60/40 on it & even adding a tricyclic to it (which is a pharma no-no) wouldn't raise it enough to stay on it. My pdoc said that was good news & bad news - my liver is great even after all the meds, but my liver is great & chews up meds like they're candy.  

I haven't tried all of the SSRIs. I never tried Paxil - my pdoc didn't think it would get much response from it after the others I had been on. SSRIs seem to work the best, but only for a minute. First time I got about 3-4 months out of it; and for the first time ever I felt what it was like to be normal. Since then, each time I take an SSRI, including the original one, the duration is shorter (about a couple of weeks now) and it's not quite as effective. 

My aunt also took the same tricyclic for years but I'm not sure which one she was on. 

But maybe you've also answered my other question that I've been afraid to ask. Does the hospital help out any more than treatment we've been getting? And if so, how and why?

I get a little tired of hearing people say that if you're suicidal you need to go to the hospital. I live with suicidal ideation everyday, since I was a kid. That doesn't mean I like it or that some days it's not winning the battle.   I want it along with the severe, debilitating depression gone. But is my little rinky dink hospital over here just sittin' on the cure for TRD and not giving it out until I show up to say out loud that I wanna die? And am I total bitch for asking that? I really don't want to offend anyone and hope I haven't but I just don't get it. 

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The hospital itself did not make things better overnight, but my doctor began taking me more seriously after the hospitalization. The hospital did start me on my way by asking what meds in my past helped even if just a little. Then they put me on those meds together, namely Tegretol and Celexa. They also had me on Wellbutrin, but that didn't help me at all and just made me irritable. When I got out my outpatient pdoc added Risperdal which really helped me out but I stupidly went off it and it didn't work the second time around. I was on that cocktail for about 2 years out of the hospital then pared my cocktail down to Celexa and Tegretol, but I relapsed and my new pdoc helped me to reconstruct that cocktail and added the Ritalin. My antipsychotic is now Abilify.

No, I had not tried any anticonvulsants before Tegretol. Now I take Lamictal, but it doesn't help me nearly as much as the Tegretol does. I'm not suggesting that Tegretol is the med for you or even that you should try it, but it is the backbone of my cocktail.

Edited by jt07
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I don't have much to add but wanted you to know I read your post. You sound like you are really trying hard to help yourself and cudos for you. I understand how you feel about the investment of time and money in this stuff. It almost feels like a second job sometimes. I hope you find some answers soon. I like your idea of checking out a doctor in a larger city. I did the same thing and finally got the treatment I needed. 

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Thanks jt07. I'll check out the Tegretol angle. It can't hurt. And I did use Abilify once and I really liked it, seemed to help the AD I was on at the time. Unfortunately, with my insurance I had to pay $600 for it & couldn't keep up with the cost. I truly appreciate your sharing your info with me. It's given me a few ideas for maybe trying more meds together for some relief. I like the idea of trying an AD + antipsychotic + mood stabilizer together. I don't remember ever having tried that combo. 

 

SchizoHH, thanks for your post. Sometimes it helps just knowing someone else gets it. I'm considering trying to get an appt at a Sansom or Mayo clinic or something, but not sure if it would be worth the $. 

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Thanks jt07. I'll check out the Tegretol angle. It can't hurt. And I did use Abilify once and I really liked it, seemed to help the AD I was on at the time. Unfortunately, with my insurance I had to pay $600 for it & couldn't keep up with the cost. I truly appreciate your sharing your info with me. It's given me a few ideas for maybe trying more meds together for some relief. I like the idea of trying an AD + antipsychotic + mood stabilizer together. I don't remember ever having tried that combo. 

 

SchizoHH, thanks for your post. Sometimes it helps just knowing someone else gets it. I'm considering trying to get an appt at a Sansom or Mayo clinic or something, but not sure if it would be worth the $. 

Your welcome. I live in a small town as well so I totally get it. I actually went to the University in a Marge city with a great psych clinic. If you have tried everything they may take your case. It isn't more expensive than any other place. 

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If Abilify helped you, you might look into discount cards that greatly reduce the insurance co-pay. I know that Abilify used to have them. The problem is that I don't know if they exist anymore because Abilify recently went generic, but the generic is still expensive. Still, I'd look into the discount cards if I were you. Your pdoc can help you with that.

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Im sorry your having such a tough time.

I've only found 1 antidepressant that works for me and doesn't give me bad did effects, Wellbutrine XL. I've tried a whole lot of different ones (over a course of 17 years) the only reason I stopped taking it was we were trying to get pregnant.

Is your insurance company not covering the Abilify at all? I ask because I think if your Dr can prove you tried x amount of other medications for the same condition and they are not working the insurance company will then cover said medication (at least in my experience)

In one of your replies you mentioned if someone is suicidal they are told to go to the hospital... just wanted to let you know I've never been hospitalized for it unless I'm to the point I can't say for sure I wouldn't act on it, I've had long periods of time when I was suicidal but not to that point and my Tdoc and Pdoc always knew about it. I'm not saying someone shouldn't get help if their suicidal in any form I just don't want you to think if you talk to someone about it you will automatically get put in a hospital, unless they think you are a danger to yourself.

 

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Just some thoughts:

-- Reconsider therapy.  It's a myth that if a depression is "medical" or "biological" only medicines or ECT can help.  Talk therapy is highly effective regardless. If you haven't seen improvement in the past for your depression, consider trying another therapist or different type of therapy and give it a real go.  Or many go's.  I personally only saw real improvement with both medications and therapy simultaneously.  One without the other is useless for me.  

-- If your doctors don't want to try med combos for a severe treatment resistant depression - then, yes, consider switching psychiatrists.

-- You also might want to go to an academic medical center so you can be evaluated for comorbid disorders. Untreated anxiety disorders, personality disorders can be a major reason that a depression doesn't respond well to treatment. 

-- Make sure you're also evaluated thoroughly for other medical problems which can worsen, cause, or mimic depression. e.g. thyroid problems, sleep disorders...

-- You're not likely to be hospitalized for chronic suicidal ideation (which I have too). It's not treated the same as an acute suicidal ideation, unless it's an acute worsening or something.

-- They definitely don't have any magic cure in the hospital. At least my experience from when I was hospitalized was it was mainly a place to be somewhat safer while they change your meds. Some people feel better there - I had a miserable experience. 

Good luck, and don't get discouraged.  Lots of people (like me) have gone for,years and decades with depression, thinking it would always be that way - but then the right combination of interventions gets tried and suddenly (or slowly) there's big improvement. 

Edited by kateislate
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SchizoHH, thanks for the info. I didn't know that was an option. Definitely looking into it. 

Jt07, sweet. I didn't realize Abilify had gone generic. That will help a lot. 

Jt07 and inked3, I did have a discount card before but it wasn't enough to offset the cost due to my insurance plan. I work for a large company that is self-insured so they write our own policy, which knows nothing about nor cares about effective treatment of any condition, least of all mental health. 

Inked3, I like Wellbutrin too but it drops my blood pressure like a hot potato. It along with Prozac was the medication that worked for me better than any other, then it stopped working. Also, my GP and my previous pdoc always know/knew about my suicidality, and now even my new tdoc. My GP took me off of work for a couple of months to try to find something that helps because I was really struggling at work (not that anyone at work knew it) and he knows me well enough to know when it's gettin' real. And sometimes when I'm struggling it's better for me to have to go to work but not this time (only the 2nd time I've been off work for this in my 21 yrs with this company). I just went to a new pdoc for the first time last week and she asked why I wasn't in the hospital if I'm suicidal, and will have nothing to do with my disability claim, I assume because she thinks I must be faking or something just to get time off work. Y'know, because it's been a real vacation layin' in bed in my own filth listening to the fuckin birds sing outside reminding me that there's a life out there that I'm just not living. Sorry, thanks for letting me vent, whether you wanted to or not. So that's why I get frustrated with hearing about being in the hospital. When I had ECT, I did have to stay in the hospital until I had my first 2 treatments and, trust me, if you aren't crazy when you get there, you will be after a few days. 

 

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