stop/adjust/continue?

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StormFront

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since being diagnosed with ptsd over 2 years ago drs have tried buspar and zoloft. both did absolutely nothing to help any symptoms. my condition is due to a protracted campaign of stalking and harassment hat hasnt stopped yet.

pcp recommended zyprexa or seroquel on recommendation from a psychiatrist I was forced to see on a temporary detention order (someone called police and said I was suicidal- they dragged me to an er, refused to believe I have ptsd & was already under a drs care and decided my trauma hx wasn't real, that I was delusional and psychotic -) after she realized I didnt have psychosis, it was still her suggestion that a second generation atypical antipsychotic might reduce my hypervigilance and panic attacks. some of mine lead to dissociative fugue states.

I drive during these, or walk miles looking for somewhere "safe". I have no recall of events during these blackouts. I agreed to try the seroquel at a very low dose but have been extremely concerned about using such a strong medication off label.

the side effects have been awful. I wanted to quit two weeks in but his nurse begged me to wait it out and "power through the first month to 6 weeks" saying those would decrease and we needed to find a therapeutic dosage. I gained over twenty lbs the first couple weeks. headaches, nausea, blurred vision, frequent tachycardia, brain fog and HEAVY sedation. most have tapered off other than the brain fog and extreme drowsiness. the weight is still on. I also had a surgical procedure last week and the ekg showed incomplete right bundle branch block. also had one after er hold, er staff nailed me with massive amounts of IM ziprasidone with doses much too close together - that IRbBB showed up first then. it wasnt present prior to the hospital overdosing me on geodon

. started first 5 days on 25 mg, went to 50 mg a day after that.

the 9th makes 6 weeks and I see him then. I don't feel like its done anything for the ptsd symptoms other than cause sedation and I can get sleeping meds with a lot less side effects (not that I want them, I feel more scared knowing I was asleep and not guarding against threats) I've had several really bad panic attacks since starting including two with lost hours, finding myself somewhere else. I was hesitant to even try this after the adverse reaction to the geodon injections.


I have a strong feeling he's going to want to increase it to "try to find the right dose". I'm very torn about what to do - stop? adjust? continue? his nurse said they can add other drugs to abate effects like weight and metabolism problems but I really dont want to end up in a cascade effect of taking drugs to deal with problems caused by drugs. if he stops it, he might just want to switch to something else and then we've got a whole new set of fresh side effects. kicking it up may do that too. f it worked and stopped the worst attacks, Id probably be willing to stay on it but who knows if it ever will or at what cost? I want to feel better. I dont want to cause more problems doing it.


Im very torn. which of course causes more anxiety. anyone have similar experience to share???
 

Sideways

Moderator
A lot of people hate atypical antipsychotics for their side effects. That’s reason enough for a lot of people to refuse to take them.

I have DID as well as my ptsd, so not dissociative fugue, but similarly high levels of dissociation. I take seroquel xr to manage that, and have used it very effectively to reduce my overall distress levels and keep them manageable. I actually tried coming off it recently and it was a disaster!

I take the extended release (releases over 24 hours) as a way to minimise the side effects - particularly that sudden hit of brain fog and tiredness, and the weight gain. I’ve been able to tolerate 300mg a day on the extended release, but even just 100mg a day if I was taking instant release? I’d be starting to see side effects.

If the side effects are knocking you around a lot, it may be worth asking to trial the extended release version. Taken in the evening, the worst of the sedative effect happens at night while I’m asleep anyway. And I don’t have the weight gain issue at all.
 

grit

MyPTSD Pro
Wow! I am so sorry that you are not being heard.

I read your post and all I can think of (especially not knowing your history other than what you typed here) is that aside all your other health issue if you are being stalked and harassed, you are not hypervigilant but you are actually in survival mode. hyper-vigilance is not a bad thing when actually a person is harassed and stalked. If during a harassment and stalking you are not hypervigilent, that is a problem.

I wonder (and this can be my ignorance), if you are so hard trying not to be hypervigilence because you are being told this is a problem and ending up in dissociated fugue state.

From my personal experience of dissociation, dissociating is the last resort of surviving..it is after all else fails that when resorts to feigning death - which is what dissociation really is.

No matter how much meds they give you, meds cannot stop survival mechanisms that we have for a good reason and that you are being harrassed.
 

StormFront

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this is why I love this group.

options- like considering extended release.
and a new point of view- like the cognitive dissonance of needing the be vigilant against a real threat vs. being told we have to control/minimize/stop the vigilant state Im in bc it's a bad symptom perhaps causing the dissoc states.

I'll bring both up with my PCP and my therapist. thank you!
 

StormFront

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had appt today.
he says the 50 mg a day was never meant to be the working dosage. that was just to ease me onto it (for 6 weeks?? that is NOT what his nurse told me, he said he's know by the 6 wk point if this was effective or not). he says we have "2 or 3" steps up on this to get to a therapeutic dose. we'll look at it in a month.
so he wants me to go from 50 a day to 200.
he blew off my list of side effects and wrote in his notes that I didn't report having any! um, YEAH, I did, a lengthy list., some which lessened and some I still have- like the weight gain (twenty six freaking pounds with NO appetite increase) and the on/off brain fog, some days I can't put a sentence together and my handwriting is all sorts of wrong . acted as if they're insignificant.
he was fairly pushy about going up on the dosage and how he really thinks I need to give this a longer try at a higher amount "because we had a hard time getting you to take anything"
excuse me???
I gave Buspar 6 months. I gave Zoloft 8 months. I'm the one who asked HIM if there was anything else I should try .
and who is "we"????
he used terms like "compliant with treatment" which makes me feel like this is something mandated . and he threw a blurb at end of notes about how Im advised that he and his staff all notice positive changes to behavior mood and confidence. HUH???? I barely spoke to anyone, my heart was racing (my new normal) and I was shaky as usual and having to keep open doors near me as a way to bolt. my husband who spends more time with me than anyone says he hasn't noticed ANY change, positive or negative. I feel like he only put that on there to justify pushing this medication on me, trying to make it look as if it is beneficial.

the entire concept of taking an antipsychotic when I'm not psychotic in any way creeps me the eff out. I don't care if its "off label", this makes my skin crawl. I'm spooked.

only bright spot today: he reinstated the clonazapam for the blackout panic attacks/fugue episodes. says he doesn't recall declining it in the first place.
 

Sideways

Moderator
if he stops it, he might just want to switch to something else and then we've got a whole new set of fresh side effects.
Have a think about what kind of outcome you want.

Medication? Isn't likely to solve the issue all by itself - are you working with someone to resolve the panic issues?

Because...

he reinstated the clonazapam for the blackout panic attacks/
This is a benzo, yeah? That's unlikely to be a good solution, long term. That's a quick trip to benzo addiction, which you absolutely don't need.

When I'm disagreeing with my treatment team about what my symptoms are, and how bad they are? I start tracking them. Daily.

Over a fortnight? You have a good idea about exactly where you're at, without having to figure it out during the anxiety that goes along with a pdoc appointment.

There are apps for that! I personally use PTSD Coach, but there's probably better ones if your primary issue is panic attacks.

Just as an aside? Do try and troubleshoot your cognitive distortions associated with medication types. I would reckon that the majority of people around the world using atypical antipsychotics (there's a lot of us!) don't use them to manage psychosis - especially Seroquel. Given you're relieved to have the backup of Klonopin back in your toolkit, the issue seems to be your association with medication labels, rather than medication itself. That isn't necessarily going to work in your favour, cause Ptsd itself? Doesn't actually have its own medication - if you find something that works, it will necessarily have a label-use that is something else.

Also consider a second opinion. This pdoc may just not be a good fit;)
 

StormFront

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Thanks for App suggestion, will look into it.
Dr is a GP,not p-doc. We haven't been able to find me one other than the one who saw me for a whopping combined total of 12 minutes during a short hospital stay. And that's why I may be hung up on the labels. Ended up in hospital when "someone" called sheriff's and said I was suicidal. So they showed up and dragged me to an emergency room where local mental health evaluator decided - with ZERO evidence of the alleged overdose and without speaking with my primary dr- that I don't have PTSD or a stalker. I made it up and was delusional and psychotic. So I was sent on this involuntary hold to the psych hospital where everyone wrote down and repeated and treated me as if I was incapable of undertanding reality. The quick talk and gone p doc who "assessed" me the next morning asked very little,.refused to release me and ordered an Antipsychotics, at max dosage, without even telling me she'd done it or why. I didn't know until they tried to get me to take it. I refused. I've never taken anything like that and was spooked bad.
Next day she comes into room and says I "need it and have to stay for weeks bc we need to get you back in touch with reality, you don't understand how sick you are but this will get those unreal thoughts out of your head". What??????
I know I have PTSD. They decided nope, I'm "actively psychotic and completely delusional". Without any proof and refusing to talk to anyone who knows the real story.
I told her to talk to my primary doc. She blew it off. I called my husband and he got in touch with my doc who eventually talked to her and told her the situation is real and I've been under his care 2 years. She finally relented the next morning and recommended at court hearing I be released since I wasn't delusional (they conveniently left off the part where they couldn't demonstrate any sign of self harm)-but didn't rescind med order. Told me prior to discharge she still thought I should be on it or something similar for the PTSD. It felt very wrong.

Now he tells me his plan has been, since talking to her, to have me on a high dose of this stuff...not max like she ordered but high. And "we had a hard enough time getting you to take anything". We?????

All my red flags are up over this.

The benzo isn't daily. It's a rescue med, only .5 mg to be taken if it looks like a panic attack is going to roll over into a blackout. I go through 15 about every two and a half to three months. Not an addiction problem. He's never prescribed them more frequently and I've never felt a desire to take them more.

Something about this is just making my skin crawl. Maybe I'm overreacting or feeling something that isn't there but I can't shake it.
 

Sideways

Moderator
Yeah, I've been hospitalised involuntarily a few times and it's always traumatic in its own way. Which absolutely isn't helpful. Sounds like you need to get your GP to refer you to a new pdoc. Because you have a better relationship with the GP, and they can put some thought into a good fit, as well as cover the important stuff in your referral (like, "This is not psychosis!").

The black outs you're having do need treating. They're pretty dangerous. Part of that treatment, at least in the short-medium term, is likely to involve medication. But working with a good therapist is likely where the real long term improvement will be made.

Now he tells me his plan has been, since talking to her, to have me on a high dose of this stuff...
This ain't gonna happen for you with your current side effects on the dose you're at.

I'm on 300mg of the extended release per day, which I tolerate pretty well. But I also take 100-200mg of the instant release (like you're using) as a prn dose when I'm really struggling.

But a high dose? For someone without psychosis? I got up to 1200mg/day on seroquel. Yeah, like 1.2grams. A day. And that's never gonna happen for you - you'd end up falling asleep in front of the doctor!!!!

A good pdoc should be able to steer you to alternatives. It may be a different type of atypical antipsychotics, or it may be something completely different. Either way, if you have a good relationship with your GP, that's where I reckon you start. Get this nonsense medication order dealt with so that if you are medicated, it's for the right reasons, and it's because you agree to it:)
 

StormFront

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We still haven't found me a p-doc. Local community services group has a three to four month wait just for an eval...and bc if their treatment of me with the involuntary hold, I don't trust them as far as I can throw them.
Neither of us has been successful finding anyone else, they're either but accepting new ots, won't take self pay or hours away. He's frustrated with it too.
The only one I've seen was the one at the hospital.

I don't know how 'high' he wants to go with this stuff. He was very evasive. Focused more on fact he wanted to go slow to reduce side effects. He insists that they'll abate "soon"

What I want is to be me again. Unlikely to happen until this situation gets resolved. In meantime Is settle for not having such severe panic attacks/dissociative episodes. If I have to take something for that while my new T and I work on tools and issues, ok. But this is freaking me out considerably.
 

EveHarrington

MyPTSD Pro
Huh say what?

Did I read it right, that you’re letting GP handle putting you on heavy hitting antipsychotics?

Based on what you’ve said, you really need to be seeing a psychiatrist based on your symptom set. A GP does not have the knowledge to help you.

Antipsychotics are indeed heavy duty drugs, and you’ve been put in the worst of them all......which makes no sense to me given how you only had experience with IV Geodon? There are so many others out there that could potentially help you, without causing side effects like diabetes. (Seroquel is much more likely to cause blood sugar issues than other antipsychotics.)

Don’t get me wrong. Antipsychotics are not bad drugs, and they help so many people with zero history of psychosis.

I’m on Geodon. I am on a baaaaaaaby dose, so small that my doctor has to prescribe it to be compounded into a liquid. And at this tiny dose, it does everything I need it to do. This is why you need a doc who will listen to you and not just get you to some arbitrary dose that may be way too high for you. (I’m med sensitive in general and all of my psych med doses are on the low end.)
 

StormFront

Not Active
I'd be happy to consult with a p doc if we could find one. He's tried for months to get me a referral and they keep coming up empty. Everyone we've contacted is either not taking new patients or won't take self pay. The community services group has nothing available for three to four months and I already do not trust them bc they outright lied to get me on an involuntary hold (state behavioral health human rights office filed violations against them for it). So there isn't anyone unless I get hospitalized and that is not going to be beneficial to me.
It's a very rural area
 
Hey @StormFront - I'm sorry you're under so much stress. Getting good psychiatrists in rural areas are nigh on impossible to find it seems.

Have you thought of travelling to get a good shrink?

I went once a month for several years with a four hour drive each way. Big days and sometimes if I was a bit too off, overnight stays were needed. But it was worth it totally. I had more help from that shrink than several years of other's.

But in suggesting this, I'm concerned about your fugue states that you say you have even whilst driving? That's no good and not safe for anyone. So can your husband accompany and do the driving? Or do you have buses or trains that can get you to a bigger regional city? Or someone else who feels like a shopping trip whilst you attend - once a month?

I reckon there is no point flogging a dead horse in respect to your current psych or any of the others. You may be able to transfer to a closer one after you're done with the waiting periods? Or, you never know - birds of a feather thing... a city psych might know of one nearer you, make a call for you to jump the cue or get you in, once he knows you are for real and wanting this sorted out short and long term.

As for the meds... I think a new psychiatrist is in order simply for that. I know you are reluctant to use meds and that's ok because I'm the same but learning to manage your condition without meds must happen. A good therapist will help you learn other 'tools' to manage your ptsd and other conditions. That takes a committed therapist and time plus lots of devotion to the cause by you.

Perhaps, if necessary a new psych could help you find that therapist and you could attend on the same day you go to the shrink or get you a referral to a local one.

You should seek some advice about getting that medication order lifted too. I couldn't handle that hanging over my head.

As for the stalking etc what is being done to address this? You don't have to answer but is anything being done? Can you get a police statement or something like that to show anyone that starts thinking you are delusional again that you are actually being stalked and harrassed?

Good luck.
 
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