considering starting meds again?

[asdis]

After some long back-and-forths with our therapist about not being able to manage our symptoms again, we've agreed to try seeing a psychiatrist for meds again. We can't really sleep or interact much with others, all of our symptoms have been ramping up like crazy. We've been on lots of different meds over the years and the best outcome we've had from them is 0 effect. As in, most of the time meds have either made things worse and/or caused terrible side effects, or at best have done absolutely nothing. We're terrified of trying meds again, but we can't keep going like this. Our therapist helped us find a psychiatrist that seems like a possible good fit (specializes in all our boxes but dissociative disorders), but that doesn't take the fear away. It is very difficult to find a provider that accepts and understands DID, or even trauma in general.

We've been on Prozac, Hydroxyzine, Seroquel, Prazosin, Lamictal, Geodon, Trazodone, Ambien, Klonopin, Zyprexa.. and those are just the ones we can remember. We know we've tried several other SSRIs, mood stabilizers, antipsychotics, and sleep meds. We had been diagnosed with many different combinations of bipolar disorder, bpd, psychotic disorders, and anxiety disorders throughout the years until we were diagnosed with DID and CPTSD (not including ED/autism). The last attempt we made at medication was two years ago while inpatient, as taking meds there was mandatory. We were unable to find a medication we could tolerate. Before the hospitalization, we had been prescribed Abilify but were unable to try it as we couldn't afford it. The psych that prescribed it to us dropped us shortly after. We've tried so many medications, we've sunk so much money into meds and providers that just gave up when meds didn't work out, it feels nearly impossible to go back to to this with any hope. We can only give a partial history (thx parents for losing our files) and we genuinely just don't remember all of the medications we've tried. We don't want to keep living like this, but being newly physically disabled makes the fear of side effects even stronger. Knowing that most medications will make us even more dissociative adds a new layer of fear, fear that our already spotty memory and poor communication skills will deteriorate even more. We remember losing our brain, being lost in dissociation even more often than now, being late constantly, not being able to hold conversations or even remember the pain we're in long enough to tell someone. It's taken the last three years of being mostly unmedicated to undo the deep dissociation that meds had put us in before.

Has anyone else been here? Or similar? If you've gone back to a psychiatrist after a couple years of not seeing one, were you able to find a helpful one? Were you able to find anything that helped? For others with dissociative disorders (especially DID) that are on medications, have you been able to find anything that helped without strengthening dissociation?

[Blueberry]

I've just read your post and my heart goes out to you. It sounds so difficult, I'm sorry

I have either partial DID or OSDD rather than full DID, and I don't have any meds for that. I just take Citalopram as an anti-depressant and L-Thyrox for thyroid underfuntion. I don't have the impression that Citalopram helps when I'm in a really bad way, when I'm in EFs. I think it helps a little bit in general when I'm more hit with depression Being in EFs - I think that's really when I'm more in a Part than in my Adult of Today. I don't find it surprising that there's not a medication for that, tho my psych doesn't seem to understand. Unfortunately, he doesn't know enough about DID and sub-forms of it...

My present psychiatrist is probably the best I can do round here. I have been in far worse, far less competent care. It took me a good while to find a semi-compatible one. I wish it weren't so.

I'm sorry I don't really seem to have anything helpful to say, so just sending support.

[asdis]

I'm sorry I don't really seem to have anything helpful to say, so just sending support.

Your response is helpful 
We're pretty sure there's nothing specific to DID medication-wise. As for psychs, yeah, that's part of what makes us nervous. Semi-compatible is better than nothing though, thank you for reminding us.
We don't remember if we've taken citalopram; have you noticed it making you more dissociative at all?

Sending support to you too :3

[Blueberry]

Thank you for your support asdis.
No, I haven't noticed citalopram making me more dissociative.

[Kizzie]

Meds are so individual Asdis, a bit of crap shoot to be honest. I was on Prozac for a couple of decades and it just helped me to keep my head above water but didn't fend off depression and anxiety all that well. It stopped working a couple of years ago and my GP was unable to help. It took quite a while but I finally got to see a psychiatrist and he helped me find meds that work for me. I don't know about where you live, but psych's here are like gold so very hard to get in to see one.

[asdis]

It is really hard to get in to see one. We've had a lot of bad luck with psychs, the first one we had retired as we graduated high school and that was the first time we went off meds after starting them. After that, a lot of psychs just trying to medicate the trauma away. Theoretically if we found another telehealth psych company we might see one sooner, but we can't use several of those services (or a handful of in-person ones) due to insurance revoking coverage once the sessions added up to $1000-ish, and every time we confirmed prior to starting services that insurance would cover them. It's one of the reasons we were dropped by our last psych.

It's been a week since we reached out to the psych our therapist found, and we're getting nervous because we haven't even received a waitlist or rejection email/call/text. We know it hasn't been very long, but it's still giving us a lot of anxiety.

[Kizzie]

So sorry to hear it's taking some time for the psychiatrist to respond, I know how difficult that is.   

[asdis]

Our therapist recently started at a new practice that has in-house psychiatry, and managed to find a psych there who's had prior experience with DID (read: one patient). We're still nervous, especially because it'll be another month before we even do intake with the psych, but we're trying to be neutrally hopeful. Our therapist has already given the psych a brief history of our past experience with psych meds and explained that we are still very hesitant to take anything, and also that we don't have a full list of past medications. There should already be understanding that this is a very uncomfortable situation for us and that our behaviors (skin picking, hair obsession, taking longer to answer questions, etc) are tied to anxiety and dissociation, so hopefully they don't negatively affect how the psych sees us.

[Blueberry]

That sounds a little hopeful, anyway. I like the way you say "neutrally hopeful". I understand being nervous. I know you have to wait a little still, but I hope this ends up being at least half-way helpful.

[Kizzie]

Hey Asdis, I would hope that any psychiatrist worth their salt would understand those behaviours and would not see you or them in a negative light, rather as clues to what may/may not work in terms of medication.

I hope it goes well, let us know if you're comfortable doing so.

[asdis]

We had our first psych appointment today. We were supposed to have therapy before it & our therapist accompany us, but she had a migraine today.

It wasn't bad. The psych isn't bad, per se. It was mostly intake and answering questions. She brought up the possibility of BP1 again to us and it definitely doesn't sit well. She brought up borderline again as well. We wish we could sign something that says "I have DID and autism. Stop calling me bipolar; stop bringing up borderline just to say nevermind." but we know that's a bit of an overreaction. We're not sure that she believes everything we say, but we can't tell if it's just anxiety or if we saw the signs of someone not listening. Our story isn't believable to a lot of people. She wants to put us on a mood stabilizer but is letting us wait to make any decisions until we meet again. We were having trouble keeping it together towards the end. Everything in us wanted to just scream because it doesn't feel like she actually understands how scary medication is for us or how difficult that appointment actually was. But it wasn't bad. We see our therapist like four more times before we see the psych again and we're going to tell her that we won't see the psych again until we get at least one joint session with both of them.

[Blueberry]

I'm sorry your T got migraine and couldn't go!

Good for all of you on managing to get through the appt without screaming. Tho in the past a Part of me has screamed when things got too much, but that might be less bad with a T than with a psych? I wouldn't actually recommend it anyway.

Does psych realise you all have cptsd at least? In my experience, psych docs don't want to diagnose DID that much, which has got to be a real annoyance when you all definitely feel like a 'We'.

[asdis]

The psych definitely agrees with our CPSTD/PTSD diagnosis. And she technically shouldn't be allowed to remove our DID diagnosis unless we stop meeting criteria. It's been diagnosed three separate times by different providers and practices over about 3 years. I think what was really frustrating was that until the psych wanted to talk about mood stabilizers, she was on "our side" of BP1 being an old diagnosis that doesn't accurately apply to us.

We talked to our therapist this morning and she set up a meeting with the psych to go over some things like reminding the psych about how the DID works and that certain types of meds are a last resort for us. Apparently just from reading the psych's visit notes she could tell that we were disregulated and not fully present, which is honestly really great for us because it proves that we're not being thrown to the wolves with this.

[Blueberry]

Apparently just from reading the psych's visit notes she could tell that we were disregulated and not fully present, which is honestly really great for us because it proves that we're not being thrown to the wolves with this.

This and much more in your text sounds good! Just the mood stabilizers... but T has got your back and that's great!