stop/adjust/continue?

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StormFront

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Thank you BlackEmerald for the suggestions.
I finally found a T to talk to, it's an hour's travel plus tolls she's not licensed yet, located through Open Path. Trauma and PTSD specialty, trained for EMDR if we decide eventually to try that. But it's a step forward.

What were often told by law enforcement that "the law can't keep up with the technology". Even the people he's sent to our home...same problem they say, proving who sent them. When enough info is gathered and cops have tried to prosecute, county prosecutor won't issue the warrants. Excuse? He lives out of date and we *might lose. So sick of it all.

T suggested I keep documentation with me to show the situation is real. I didn't want to have to look at it so I put the most relevant documents and ICE info on a keychain USB drive. Attached an engraved tag. She thinks this is a good idea to prevent or of I'm being held to show providers that I'm not delusional and have adverse reactions to meds they often use in blanket PRN orders.
 

lostforgottensoul

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

This tells me it's immediate relase and not XR (extended release). The lowest dose of Seruquel XR is 50mg. The lowest of Seriquel IR is 25mg.

In my own experience, immediate release did zip to help anxiety or panic or any PTSD symptoms. All it did was make me sleep. Seriquel XR (extended release) is my godsend. We titrated up starting at its lowest dose of 50 mg and went up 50mg at a time monthly (I believe or it could have been every few months) until we stopped at 200mg. I take one, Seriquel XR 200 mg at 6pm and it picks up most of my anxiety and panic the next day and the build up of meds is what stablized me. Like majorly.

Have you discussed IR vs XR (ER) with your doctor and seeing if maybe XR (ER) would work better for you?
 

StormFront

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We have talked about the xr, he didn't seem to think it would be more beneficial.
Cost is also a factor. I'm self pay.

Yesterday wasfirst day on 200,had me doing 100 for five days then up to this.I'm back to splitting headaches, nausea, weird handwriting, massive brain fog and sleepiness and blurry vision.

Just want to quit this. Husband says I should give the 200 a t least two weeks, see if benefit is better than side effects. I don't know...I am still very uncomfortable with the whole thing. . He got the suggestion of this from the p doc who "saw" me during the 3 day hold back in August. She thought I would as delusional and he told me even when he spoke with her and told her my situation is real she didn't seem inclined to believe it. She ordered Zyprexa at max daily dosage without even telling me she was doing it or why. I feel creeped that someone who would do that and not even give me the courtesy of talking to me first is involved in his decisions.
Maybe I'm just experiencing some paranoia but my husband says we'll, if it really is that way, and it HAS been recently, you're not paranoid, you're appropriately worried".

Trying to compose a follow up message to send him through the online system bc I want, no NEED, written documentation. I don't think I trust him anymore.
 

StormFront

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finally messaged my dr. took a while to compose. having trouble writing and typing. words get mixed up, misspelled.
sent through online system bc I feel like I needed documentation
___________________________________________
have some questions/concerns
you said "two or three steps up to go" on the seroquel; what is the target dosage and when are we expected to reach it? what is the rationale for the target dose? why this drug?
side effects are ramped up again; blurry vision, problems writing, leg cramps, extreme drowsiness, etc. is that from increasing it and is this something I should expect any time the dosage is changed? weight is still an issue my eating habits have not changed and that's a pretty significant increase. this drug can cause metabolic changes and even diabetes, is this much weight gain a red flag for that?
I'm still not comfortable with the idea of taking this despite the assurance it is "off label", esp since it seems it was on the recommendation of Dr XXXXXXX, who completely disregarded me, who spent less than ten minutes with me before ordering the maximum daily dosage of a powerful antipsychotic without notice or explanation or regard to the truth of the situation and you said was "difficult to convince" about me having ptsd from stalking- this spooks me bc I feel like I'm being given this for the wrong reasons or reasons I'm not being fully told. The recent appt notes saying "patient is compliant with treatment" scares me, it implies a mandate and makes me ask "what happens if I'm not *compliant? Is someone going to try to make me take it or other drugs???" based on what happened in August both XXXXXX(husband) and I are are worried that's a concern esp since we have all the records now and know just how far they went to lie and force me into a hospitalization under a completely wrong diagnosis, with no regard to the harm that was going to do to me.
I really don't like that it makes me sleep so much I'm scared something will happen while I'm unable to wake up
 

StormFront

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stopping it right now. can't walk.
over past few days have had weird sensation in legs after day dosage. took it about an hour ago and had to get up to use bathroom and its like my legs arent even there, cant feel them, moving in weird way. Im done with this .
 

Sideways

Moderator
Im done with this .
If you possibly can? Wean off. The headaches from going cold turkey are an absolute mofo, and it's not a drug that is particularly safe to just stop taking.

Weaning off at no more than 50mg intervals, for 4 days at least? Will have you off reasonably quickly, and safely.

Having said that? This is powerful medication (it has to be, given the kinda of issues we're hoping it will solve for us), and you really shouldn't be messing with your dose without speaking to a doctor, because it isn't safe.

No one here knows your personal medical and health situation, so no one here can tell you what will be safe for you. So, go to a doctor (a different one if you don't have any more confidence in your current one) and get some safe advice.

For future reference? Trialling any psychotropic medication, you will need to get it to a therapeutic level in your system for it to have positive effect, and you are likely to experience unwanted side effects for at least a couple of weeks each time you increase your dose.

Medication can be life-saving for some of us. But it's not an overnight cure, and every medication option is going to have its pros and cons, and an initial period of side effects that may or may not be permanent.

Therapeutic levels in your system is always relevant. Until the medication reaches a therapeutic level in your bloods? It ain't going to help.

This isn't me saying "Keep taking it". This is just the conversation that your doc should have had with you about the pros and cons of using medication to assist with ptsd symptoms. There is, unfortunately, a lot to consider.
 

lostforgottensoul

MyPTSD Pro
We have talked about the xr, he didn't seem to think it would be more beneficial.
Cost is also a factor. I'm self pay.

In the US anyway, there is now a generic for Seiquel XR. There wasn't when I first started it.

I am baffeled that you are having these side effects on immediate release and the doctor doesn't think that extended release would be worth a try. I would say a second opinion is worth it. If you cant afford even the generic, you want may to approach the manufactor of the non-generic. Many times they have money off and discounts, many times discounted all the way to zero. I did that with an expensive, no generic, anti-depressant (I believe. I tried soooo many drugs before landing on Seriquel XR) and they allowed me to go through their discount program and get the drug for free. Its worth a shot. All they can say is no.

Also, there are a lot of RX dicount programs that you can use with insurence to get more money off the RX.

Sometimes the pharmacy will even have RX discount programs.

Many different things out there. If you go to another doctor for a second opinion and that doctor says XR would be worth a try, that is.

Trialling any psychotropic medication, you will need to get it to a therapeutic level in your system for it to have positive effect, and you are likely to experience unwanted side effects for at least a couple of weeks each time you increase your dose.

And that!

I was ready to give up on XR every single week. If it weren't for the side cheerleading here, i probably would have. It took many months to get to where I was seeing positive effects. I don't remember exactly what was going on. I think a bit of tiredness and stuff but nothing like the IR. On the IR I felt drugged. Not that I am pressuring you, at all. I second @Sideways, see a doctor. Hopefully a different doctor for a second opinion. But don't just rip yourself off the meds cold turkey. That can be very dangerous!
 

Sideways

Moderator
I am baffeled that you are having these side effects on immediate release and the doctor doesn't think that extended release would be worth a try.
Yeah, nah - these are totally common side effects. And for some people the dose they need is teeny tiny.

I knew a lady that couldn't walk back to her room (fell over in the hallway) after taking half a 25mg tablet. Like, wtf!? I was on over a gram at the time!!

These are side effects that may ease up as your body adjusts, or they may not.

It would be worth speaking to your pharmacist about the cost of generic XR vs Instant Release. Because yeah, as @lostforgottensoul mentioned, the patents on Seroquel only recently expired, so the cost should have gone down substantially, and your general doctor may not be up to date on the cost of generic brands.
 

StormFront

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Home from ER
Got worse after earlier post. Couldn't feel legs other than some random jolts and a sort of low electric current thing. Then arms felt funny. Then face...earlier kept feeling like something crawling on it. Later sort of novacaine numb. Was slurring words. Called 24 hr Ask A Nurse in my system advised me to go to hospital or she was calling rescue to come get me.

My MIL took me and she's friends with my doctor's nurse, called him on the way. He advised same and said something odd about likely needing IV fluids and to relax, not to fight the IV....?
ER doc disagrees says he doesn't think it's the Seroquel, not sure what it causing it. "Focal neurological deficits present" and says unable to id cause. Wanted to keep me overnight but my triggers were all going off so signed out AMA. Gave no fluids and said no drugs that reverse symptoms anyway. Online says there are, took two benadryll on advice of friend in med profession.
It's now over 8.5 hrs since day dose. I'm speaking clearly again, can mostly feel arms and hands and left leg is improved (right still not responding). ER told me NOT to discontinue. My doc's nurse didn't say anything about it that I know of. No way I'm putting any more of this in my body.
Reading withdrawal any time after five weeks is hideous bc brain is now dependent on the new norms of dopamine and serotonin, and though the drug should clear in two days, the effects of regaining homeostasis in brain will be weeks long.
Withdrawal stories are horrifying to read, how can any drug that causes that much distress to stop be therapuetic????

...had to read through twice still misspelling or using wrong words often....
 

siniang

MyPTSD Pro
Yeah, nah - these are totally common side effects. [...]

These are side effects that may ease up as your body adjusts, or they may not.

Not sure if you're referring to anti-psychotics specifically or mental meds more generally, and obviously you know way way way way way more regarding meds than I do, but doesn't every med come with "common side effects" and more "rare/severe side effects"? Some of the latter which are "call doc immediately"?

Given how little information her doc seemed to have given her and didn't explain most of nothing of all this? I'm really sorry you're going through this @StormFront and it sounds awful, but please do find another doc who actually takes you, your side effects, and your concerns serious.

I second @Sideways recommendation of follow-up check re other things, including stroke.
 

StormFront

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they did a ct scan and said it was clear , did some neuro function test and said something about rating a +2, knees reacted to reflex test but not soles of feet or to pinprick.

they also tested clotting factors- mine were in fast normal range
 
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