Path forward when providers have failed you

[tiredxillenial]

Tried meds, tried ketamine, tried TMS. I think I can say this depression is truly treatment resistant. I am tired of seeing myself neglect things I care about because of this depression. It has become apparant to me this week that my therapist is willing to let me continue to decline. I have been talking about wanting to actually be proactive in treating my depression instead of just keeping me from killing myself. I thought I had finally got through to her but in session this week she suggested not pursuing further medical treatment and having a backup hospitalization plan. This is completly unacceptable. Part of what I'm dealing with is mental health stigma and because psych hospitals keep you from email and cell phone, there is no way I could do a psych hospitalization without being outed at work. I would rather die than do that. Anyway, therapist has reached out to tms provider saying I would ask for ect and she doesn't think it's a good idea. I have been dealing with depression for years and have seen it whittle away most everything I care about. I have been at my last straw and her doing this only closes doors for me. She took away my gun and ammo but now I am buying replacements because I need that option.

My choices moving forward are: 1) try ect now as a proactive measure (no one is willing to perscribe it though and my therapist has now closed off what was likely my only path to it); 2) ignore it all, try to focus on wrapping up projects, kill myself when I have the first indications of a decline (this is likely what I'm doing); 3) kill self now to avoid inevietable future slide into more depression (the benefit of this is that I won't see myself continue to neglect the thigns I love due to depression); 4) have a perscriber on tap willing to get me into treatment the moment I show I am declining; 5) wait- allow depression to take its course and either I live or I die (the drawback is that this means commiting myself to more suffering.)

My choice would be trying ect because I really am at my last straw. If I can't turn the depression around though I would rather kill myself than continue to suffer or see myself lose even more or continue to neglect the thigns I care about. People don't understand this and think living misery is better. I wish I could explain my situation to doctors and ask for advice about how to move forward, but they won't accept killing oneself as a valid option and they'll just tell me to reach out to a psychiatrist. That's the problem though- I've been there and done that and it has only wasted money and further convinced me that dying is a good choice: the unwillingness of psychiatrists to treat this more aggressively when I am asking them is frustrating and tells me that killing myself is likely the most dignified option I have. Because I can still work though, no one seems to understand that I've been at my last straw and am simply unwilling to continue to lose more to depression and that I prefer death over continued decline.

I am going to stop seeing the therapist who is willing to let me decline further, doesn't want me to pursue what is my last option for treatment, and is closing doors for me to do that. I'm just frustrated. I don't know if there are other options I'm maybe not seeing, but I just wanted to say my situation to people who might understand and who will not think that death should be avoided at all costs. I've tried playing by the rules providers have given me and it's just been utterly fruitless and harmful. At this point, if I can't try that last treatment option, dying would be far more dignified and preferable than ongoing decline or suffering.

I hope to replace my gun and ammo this weekend. I am searching multiple sites to find replacements. I'm gonna finish tms treatment on tuesday but I don't think asking the provider for an ect referral will be fruitful at this point thanks to the therapist, so i'm likely just going to drop contact. I'm not going to cancel therapy just yet, because I don't want to raise suspicion, but closer to the date of the next scheduled session i'm gonna ask to skip that week because the week has been a lot. I think that messaging about a week later that i'm gonna stop therapy because i can't work with a therapist who is willing to have me decline further and doesn't listen to me, will hopefully not result in any attempt to section me. And of course if I get a replacement gun and ammo this weekend or asap, then I can do the most dignified thing I have left to do.

 

[Spitfire]

Who decided to try rTMS prior to ECT? It should normally be the other way around with ECT coming first. If ECT works it can help relatively quickly.

You want ECT and they are against it? Do not drop the doctor giving meds if you are on them, which you probably are? I say drop the other one who is refusing to help you though. How much more good is this therapist going to do for you at this point? Why is this person against that treatment for you? I really don't understand? Was that who got you those other therapies, this therapist?

It almost sounds to me this person has an aversion against using ECT for some reason, if they jumped over it to go right into rTMS.

It is not logical to me with the little bit I know of these things, and I am trying to understand this part of it?

You sound like you know what you are talking about, and you want the help too. It is time for a new doctor based on what you have said in my opinion.

There is even vagus nerve stimulation to try for resistant depression which goes beyond rTMS.

If you want ECT therapy. I think you should be bold an talk strongly in an effective way to the doctor you are seeing right now, and find out what the problem is...

 

[Silver]

No idea what TMS is sorry, but I don't understand why your therapist is against you trying ECT, or why she has the power to stop you trying it. I believe the member @cantgetoutofbed tried ECT successfully (for a few years anyway), and ECT is helpful for some people. Could you see a different therapist, or contact a medical professional directly to ask them about the possibility of beginning ECT?

 

[Mr2005]

Moving forward, one of my least favourite sayings. All I want to do is go back. Best I can do is plough on and just ignore what year it is. Basterds wasted so much of my time

 

[tiredxillenial]

I have seen every psychiatrist that I could find associated with ect but one I could in the metro area that I am in. No one seems willing to give me ect though I have spoken very directly about it. There are only two places that do ect where i am, and neither allows self referral. if I could have self referred I would have done that. At the end of July I reached out to the doc who had given ketamine saying that I was declining and thought ect was my best option. Never heard back. I was declining fast though so I reached out to a provider who advertised ect on their website. Did an intake. She wanted to give me a script (I have advserse effects to pretty much all psych meds and had told her this.) I said I wanted ect. She said they would follow up with me. They never did. I followed up with their office multiple times. never heard anything back. I reached out to two providers at that time. One was someone who advertized ect and tms. I said i was interested in ect. He gave me a script for a low dose of cymbalta. My neighbor was leaf blowing outside at the time and I have sensory processing disorder so I was feeling a complete sensory assault during the telehealth appointment and didn't push back though I had said that I wanted ect earlier. The other provider was someone who does tms and is local. his office had no covid precautions in place and he just gave me a three week follow up. I was not impressed with either. Neither is covered by my insurance either. Getting a script for a low dose of cymbalta prompted me to get my first gun- because it was just so disappointing to be so neglected by psychiatry. a few days later I was at the point of trying to induce seizures with a wellbutrin overdose or ordering a vintage ect machine to use on myself. i ordered the vintage ect machine (which isn't complete and therefore is not useable though it powers on) but while I was waiting for it to come a convo with a friend prompted me to reach out one last time. The tms provider was local so i just reached out there because there is an energy cost with travel and dealing with incompetant providers. i emailed and asked if I could just start tms. he said yes. it is all private pay. I guess that is why it's easier to access than ect. Yeah I'm jaded on psychiatry. Their office is horrible (they don't run on time, don't have covid precautions, don't listen when you ask them to wear masks, etc) but he has been the most responsive provider. Starting tms was a matter of life or death and it's bought me some time but i can't continue paying out of pocket past the index treatments that i've had to dip deeply into savings to access. i'm not remitted yet. I was in email contact and said that if i was still suicdal after the index treatments that i'd like to just start ect. he said he could give me a referral. at that point i canceled the follow up appointment i had with the ect provider who gave me a low dose of cymbalta and a four week follow up. I figured i was ok on ect access if i needed it at that point. I had kept my therapist up to date over email and had messaging my thinking around accessing ect to her. then we had our appointment. the situation i'm in now is that i think she has put a bug in the ear of the tms provider that i am seeking unneccesary treatment. i don't really know what to say at this point. i had been at my last straw and everything in my post starting this thread are things i shared with my therapist before. at this point trying to figure things out further just feels like too much effort. i have gone above and beyond to address my depression and since this summer i have just had the door slammed in my face so many times when i've tried to access ect. i'm aware of things like vagal nerve stimulation and other depression surgeries and would do them in a heartbeat. i have ocd too and would like to have both treated. the problem is that accessing any of these options is apparently impossible. i really don't understand who gets ect referrals where i live because i check all the boxes for it and want it and have asked for it multiple times now but i can't seem to get it. it's like if you can work no one thinks you're really depressed or need more aggressive treatment. I am just kinda done with it all.

 

[Spitfire]

A little difficult to read through everything said there.. for if I get something wrong, or if it seems like I didn't understand.

My nephew has a sensory processing disorder same as like you mentioned, and I bet this is a difficult thing for you as well.

And yea, that makes sense when it is private pay like that with rTMS versus ECT, and that sucks. It is too bad it is not the other way around for you. Although, ECT is possibly just a bit more expensive...

The rTMS guy sounds like he is your hope to get ECT then, and it should be pursued through him now? You never know if that may work out? I sure hope you get that referral from him.

You tried initiating your own seizures? Only a specialist should really be doing those types of things. There needs to be some control. Please do not do the wellbutrin thing again, okay?

The rTMS was helping you. I think this shows good promise for ECT to be an even possibly more effective treatment in a much shorter timeframe.

If I thought ECT could help me, I would just simply have to keep trying, and find a way.

It has to be exhausting to be going through all of this, and I feel for you, but do not give up on yourself if you do not want to. It does not sound like you really want to give up yet.

 

[HadEnough1974]

I have seen every psychiatrist that I could find associated with ect but one I could in the metro area that I am in. No one seems willing to give me ect though I have spoken very directly about it. There are only two places that do ect where i am, and neither allows self referral. if I could have self referred I would have done that. At the end of July I reached out to the doc who had given ketamine saying that I was declining and thought ect was my best option. Never heard back. I was declining fast though so I reached out to a provider who advertised ect on their website. Did an intake. She wanted to give me a script (I have advserse effects to pretty much all psych meds and had told her this.) I said I wanted ect. She said they would follow up with me. They never did. I followed up with their office multiple times. never heard anything back. I reached out to two providers at that time. One was someone who advertized ect and tms. I said i was interested in ect. He gave me a script for a low dose of cymbalta. My neighbor was leaf blowing outside at the time and I have sensory processing disorder so I was feeling a complete sensory assault during the telehealth appointment and didn't push back though I had said that I wanted ect earlier. The other provider was someone who does tms and is local. his office had no covid precautions in place and he just gave me a three week follow up. I was not impressed with either. Neither is covered by my insurance either. Getting a script for a low dose of cymbalta prompted me to get my first gun- because it was just so disappointing to be so neglected by psychiatry. a few days later I was at the point of trying to induce seizures with a wellbutrin overdose or ordering a vintage ect machine to use on myself. i ordered the vintage ect machine (which isn't complete and therefore is not useable though it powers on) but while I was waiting for it to come a convo with a friend prompted me to reach out one last time. The tms provider was local so i just reached out there because there is an energy cost with travel and dealing with incompetant providers. i emailed and asked if I could just start tms. he said yes. it is all private pay. I guess that is why it's easier to access than ect. Yeah I'm jaded on psychiatry. Their office is horrible (they don't run on time, don't have covid precautions, don't listen when you ask them to wear masks, etc) but he has been the most responsive provider. Starting tms was a matter of life or death and it's bought me some time but i can't continue paying out of pocket past the index treatments that i've had to dip deeply into savings to access. i'm not remitted yet. I was in email contact and said that if i was still suicdal after the index treatments that i'd like to just start ect. he said he could give me a referral. at that point i canceled the follow up appointment i had with the ect provider who gave me a low dose of cymbalta and a four week follow up. I figured i was ok on ect access if i needed it at that point. I had kept my therapist up to date over email and had messaging my thinking around accessing ect to her. then we had our appointment. the situation i'm in now is that i think she has put a bug in the ear of the tms provider that i am seeking unneccesary treatment. i don't really know what to say at this point. i had been at my last straw and everything in my post starting this thread are things i shared with my therapist before. at this point trying to figure things out further just feels like too much effort. i have gone above and beyond to address my depression and since this summer i have just had the door slammed in my face so many times when i've tried to access ect. i'm aware of things like vagal nerve stimulation and other depression surgeries and would do them in a heartbeat. i have ocd too and would like to have both treated. the problem is that accessing any of these options is apparently impossible. i really don't understand who gets ect referrals where i live because i check all the boxes for it and want it and have asked for it multiple times now but i can't seem to get it. it's like if you can work no one thinks you're really depressed or need more aggressive treatment. I am just kinda done with it all.

Have you considered getting off all meds but very slowly and see what happens? That's what I did and I got better. That and exercise.

 

[Spitfire]

I really think if the rTMS was helping. If the TMS doctor knows this along with the fact you are running low on available funds to continue this with him..

If this doctor is a professional they should be willing to write you a referral now for ECT.

 

[tiredxillenial]

Thanks all. I'm gonna email him now about it. With the Wellbutrin I ended up not doing it. I researched how many people have seizures after taking a high dose of Wellbutrin and the rate was too low for it to be worth me trying. I was ready to do it if the rate was higher though. And I have gone off many most of my meds.

Most meds for depression or ocd did not impact the illness but gave me a side effect where I turned into a hyperactive two year old. The only morning meds I take now are concerta, gaunfacine, and testosterone, and I am temporarily doing wellbutrin in the morning to see if it will help with TMS. It is an old script that I stopped because it wasn't effective. Since TMS supposedly works by making neurotransmitters more effective I added it on for the TMS but don't think it's useful on its own. The concerta and gaunfacine are adhd meds and the testosterone is because my body does not make a sufficient amount. Wellbutrin is used for depression but also for adhd. In the evening I take finestride to keep my hair, and the following meds to help me sleep- belsomra, mirtazapine, lunesta, ambien, and sonata. By far the most meds I take are for insomnia but they don't give me side effects, are not bezos, and actually work really well to treat my insomnia.

Incidentaly perhaps the sleep medicine specialist is the only provider that I would say is a doctor I see. He was so good that I asked how much pay out of pocket he was when my insurance changed and he was willing to give me a low self pay rate. The primary care physician I see thorugh my insurance is a perscriber rather than a doctor and is horrible. I've had a broken toe for months now that they have not given me a referral to treat. If I make it through the depression, I am thinking of asking my old primary care physician if they could do a self pay discount.

One positive thing happened as I was writing this though. I got a call from a local number that I picked up thinking it was one of the gun sellers I had contacted. It was one of the doctor I had seen (the one who advertized doing tms and ect) when I reached out to doctors last. I saw him and the tms provider at that time and asked the tms provider to just start tms because he was close to me and traveling there was just less effort. Anyhow, the doctor that just called (the one I didn't see again who advertized tms and ect) called because he had writen me a script for mirtazapine that was low and he wanted to make sure I had enough meds. He noted that I had cancelled my follow up appointment and I explained that he was out of network. He said he would write me a new mirtazapine script until I could see my current doctor again. That was really sweet and indicates thinking like a doctor rather than thinking like a perscriber. He is out of network and does ect at a facility that my insurance doesn't cover, but I feel like if the tms provider isn't willing to give me an ect referral that I could maybe book an appointment with the doctor who just called, update him more thouroughly, and see if he could give me an ect referal to a facility that my insurance does cover.

Health care in the states is a saga.

 

[Spitfire]

That is a really great thing to hear! I am super happy about it for you.

I think it sounds like you deserve a way to get this treatment for yourself, it could really help, and it sounds like you know that for yourself.

Another door just opened up for you with the other second out of network provider who called out of nowhere... How coincidental is that!

Thanks for updating on this, I appreciate that, and wishing you success.

 

[tiredxillenial]

Thank you. I messaged the tms provider so hopefully he responds saying that he'll give me an ect referral. If he doesn't then I can reach out to that other provider and explain the situation and see if that could get me access. I am really hoping one of these options works out for me.

Posting about it here and hearing from people has helped me reach out to the tms provider and ask for additional treatment. My concern was that he might just think of me as "treatment-seeking" and write me off. I guess we'll see what he says. He seems more open to biologic approaches than the therapist i had been seeing, so hopefully that is enough for me to access ect. I really don't understand why it seems that so many providers are so resistant to ect when someone fits the criteria and wants to try.

 

[TAW122]

I'm sorry to hear about your plight and the therapist who isn't being helpful. I hope that you are able to find what you need whether it is to seek the last option or to find peace through self deliverance.

 

[tiredxillenial]

Yeah so emailing the provider was not fruitful.

This is what I messaged in an email I titled 'magic hat' (I didn't mention ect specifically because of concerns about what the therapist may have said to him):

If you have a magic hat of affordable non-psych-inpatient treatment options, I think now is the time to pull something out. The TMS is helping and I would love to continue it, but I can't afford continued sessions out of pocket. Heather suggested waiting to see what happens after TMS and having a hospitalization plan. I have been telling her that I am tired of just treating the depression enough to keep me alive and that I want to actually thrive. Waiting to see what will happen when I'm still depressed and planning to hospitalize me when I get more acutely suicidal is not a proactive treatment plan. I'd like to move forward with treatment that might actually address the depression and that I can afford. If you can connect me with viable options for this please let me know.

This is what I got back from him:

The tms will continue to work and build for weeks even after the last treatment

Not sure what you mean about non psych rx options? Your insurance has limited psych benefits as we discussed

-----

Maybe my perspective on the email back is clouded but I don't see any path forward with him here. The message back also does make me suspect that the therapist did turn him off ect for me somehow. Some other path forward may come to me and maybe others have thoughts on it. I suppose reaching out to that other provider could be an option, but I don't think I'd get any traction with him if I haven't gotten traction with anyone else.

I have some focus today so I'm working on a project that someone else needs me to do. I want to use the focus and the little reprive I've gotten from tms to wrap up projects, get my gun and ammo, and act as soon as I feel the next decline coming, or possibly sooner if I can. I'm going to avoid communicating with the mental health providers I've seen at this point though because they aren't helping, are wasting my time and money, and are just keeping me from doing what I have to do to have dignity, and are causing me suffering and despair. There is one person in real time who knows what's going one (the person who needs something from me actually) and I can very easily just not update her on things. I plan to post to this site because this site is much more helpful than anything else, and people actually understand and don't offer useless and condescending advice.