Seroquel Support Group

[[lo...]]

I did stumble upon the study on pubmed, but they wanted 8 bucks or so to read, so I passed. also it is hard to say what they mean by low dose, as the FDA does not approve 'low dose' unless its off-label. i believe the lowest approved is 200-300 or so.

btw - i had a bit of sleep disturbance on the first 2 days of stopping, but last night was great (3.75 remeron on all days). tonight i will drop the remeron as well and see how that goes.

i think that the gabapentin does generally a good job as sleep aid during the taper I will stick to that

 

i also searched some adverse reaction database, and seroquel + TD produced over 700 cases.

I did research quiet a lot the last couple days. i could not find any data anybody getting TD from under 100mg. but 2 days ago I did what i should have done long ago - I flushed all of my remaining Seroquel pills down the drain.  Sleeping is harder, but I am not even risk 1 more day of this.

So yeah - it is most likely safe as long as it hits h1 receptors, but why risk it...i think benzos are better then seroquel, yeah taper sucks, but won't cause TD, dystonia, and who knows what....

would you even risk a 0.01% getting TD?

 

Interestingly, my pharmacist suggested I switch from Q to Remeron because she thought it was safer even though I was taking only 25mg of Q. (I am a very thin female. I expect it varies from person to person.)

 

Reports of even low-dose Q taken daily long term causing nasty side effects like TD are starting to surface. I would try to stay at 25mg if at all possible. And intermittently is not as scary as daily use. My theory is daily use does something to the histamine receptors and makes the drug more likely to hit the dopamine receptors. Just my personal theory from doing lots of reading. I am not a medical person.

 

I have liquid tappered to 17mg/day with great difficulty and still sleep about the same. The w/d has been nasty, though.

 

Hope this helps.

 

Gard

 

Yeah. Wish I could remember where I read that case study. I think it was on PubMed. No idea what I was googling when I found it. Just came across it by accident, so who knows where!

 

Most OTC sleep meds are some kind of antihistamine, so you could always try that if you get desperate. Or put up with the remeron hang over. If I didn't need it every day and wasn't hooked on it already, I would switch to something else.

[[Ca...]]

How is it possible to do a liquid taper of Serequel?  Can it be compounded by a compounding pharmacy?

[[ga...]]

Seroquel won't dissolve in anything that is OK to consume, so you have to suspend it. Some pharmacies will suspend it. Some won't. Mine won't. They say it's not stable as a liquid. So I make my suspension with water every night, pull out a portion and pitch it, and immediately drink it. OraPlus would be a better choice for suspending, but I can't afford it. I think if you went onto the liquid titration board you could get someone to explain how to suspend using OraPlus.

 

Gard

[[be...]]

Hey GARD:

 

I've been moving to another state and still waiting for my home to close and don't have my desktop so I can't log in much. Just wanted to say I am still around and will be on much more once my movers come in late Nov. Thanks for taking over and so glad to see new members here but sorry they are on Seroquel. Yuck.

 

Betsy     

[[ga...]]

Hi Bets. Wow, I am impressed. A move would kill me.  

 

Hope all goes smoothly and you are back online soon!

 

Gard

[[Ka...]]

I haven't read all the threads so hope it's ok just to reply.  I've been on Seroquel for years due to a bipolar diagnosis that's questionable, esp. by my therapist I see weekly  Once I even asked my Pdoc (psych doc) if he'd met me for the 1st time would he think I was bipolar and he said "no".  Wasn't dx'd until age 53 either.  Anyway, I was on 300mg Seroquel and insisted a year or two back (can't remember) he lower me to 200mg.  Well he was also prescribing me high amounts of Klonopin (3mg) which I'm currently detoxing from.  3mg down to .5, but tapering with Valium.  This is the 1st time I've ever been this low on K until I tried tapering this way.

 

But sleep was non exsistent, partly to the detox and party to severe arthritis in my R shoulder and waking up every night in pain.  So a week or so ago I upped the Seroquel, taking my 200 and cutting another 200 in half.  Sleep has improved so much this week, thank God!  But my biggest problem with Seroquel is it's a weigh gaining drug and losing is next to impossible.  I remember when I 1st started. 25mg knocked me out.

 

So I'm glad to have found this group.  I'll try and look at more posts when I have time.

"

[[ga...]]

Welcome, Kassidy.

 

I've gained weight, too and have had to really discipline myself to eat less and even go to bed hungry. When I don't, more weight appears like magic.   Never had this problem before.

 

My low dose Q doesn't knock me out but gives me enough sleep to get by. We're at an age that sleep becomes a problem for everybody. I dim all the lights at 9PM, no fluorescents, only dimmed yellow bulbs, and do quiet things for an hour and then just sit until I am sleepy enough to go to bed. I wake up twice in the night but use a sleep app that helps me go back to sleep again.

 

I tapered part of my Q but have gone back to tapering my L. The Q will probably be the last thing to go for me.

 

Gard

[[be...]]

Hi Bets. Wow, I am impressed. A move would kill me.  

 

Hope all goes smoothly and you are back online soon!

 

Gard

 

Hey Gard:

 

The drive was no picnic but I made it. (phew) and I'll try to check in when I can. When I get my real computer up and running, I'll be bad k to posting per normal. Hope all  is well with you.  :

 

Betsy

[[ga...]]

Hi, glad you have the drive behind you. And now for the unpacking!

 

Not doing great...Living with my young adult daughter is putting me through the wringer, but we have no choice. I'm in no shape to move and I can't live here alone. Today she was telling me what a bad job I did parenting her. And how her life is a hopeless mess. Do they ever grow out of this? My son has already moved out and has little contact. Same thing from him. I was/am a bad parent and he doesn't want to be around me. They seem to both be forgetting that it was their father who dumped us all when I got sick and left me nearly broke with 2 teenagers to raise. I was sure we were going to be homeless. I was down to one month of money to live on before I got a temporary court-order for support. When that's gone...no idea.

 

You give everything you have for your kids and then you find out it wasn't enough and they want you to be something you can never be. :'(

 

Sorry, it's been a very rough week.

 

Gard

[[Be...]]

gardener, your daughter is being disrespectful.  Kids don't seem to have respect for older people anymore.  I'm sure you weren't a bad parent.  She's not old enough to realize you did the best you could.  She needs to stop abusing you with her hurtful words.  It's not right.

[[be...]]

Hey GARD: this is my fourth attempt at replying to you. I did not realize you were in this situation. I'm so sorry for this. Like becks said, your daughter is disrespecting you. She is still young, and may not think like an adult. I believe she is projecting her anger from the entire situation onto you. Your son took another tact and just left. I'm sure once he calms down and can think rationally, he'll be back Never once think you were a bad parent. Never! You had to do what you had to do. Plain and simple.

 

I think you are one strong lady to handle this terrible situation, while going through w/d. I'm guessing it is bad, as you said you cannot live alone. I know when my parents got the big D, us four kids hunkered down and took extra special care of my mom. My so called father was a mean and nasty drunk. It didn't bother me when he screamed at me, but we could not tolerate his horrible behavior toward my mom. After he left, none of us kids spoke to him, and that was 30 years ago, and now is is dead, TG. Of course he left us nothing while he was a rich man. Remember you must be number 1 in order to get better. And then you can form a plan. Pls feel free to send me a PM is you want to. I am not online that much because of my move, but I will check in. Are you in a holding pattern with the Q?  I hope you collect disability, as you deserve it. Just know that I will be thinking of you always, and you will be A number 1 to me.

 

Betsy    :smitten:

[[ga...]]

gardener, your daughter is being disrespectful.  Kids don't seem to have respect for older people anymore.  I'm sure you weren't a bad parent.  She's not old enough to realize you did the best you could.  She needs to stop abusing you with her hurtful words.  It's not right.

 

Thank you, Becks. She is having some mental health issues of her own and stuff just comes out of her mouth. Not having kids, she doesn't realize how it feels to the parent to hear such things. She came back later and said she was sorry she hurt my feelings but still seems mystified as to why I was so upset. In fact, the whole taper and its effects seem to be beyond her comprehension. It's very frustrating. I tell her maybe we should part ways, but that seems so painful, too. We are stuck with each other and I have no idea how to make it better.

[[ga...]]

Hey GARD: this is my fourth attempt at replying to you. I did not realize you were in this situation. I'm so sorry for this. Like becks said, your daughter is disrespecting you. She is still young, and may not think like an adult. Correct! I believe she is projecting her anger from the entire situation onto you. Correct! Your son took another tact and just left. I'm sure once he calms down and can think rationally, he'll be back. He does speak to me now and has come by very briefly, but mostly keeps his distance. But with the holidays coming up, maybe he will soften up. Birthdays coming up, too. It's a busy time our family. Never once think you were a bad parent. Never! You had to do what you had to do. Plain and simple. Correct! Though I'm a little less sure about this. Keep wishing I had made better choices and been less critical.

 

I think you are one strong lady to handle this terrible situation, while going through w/d. I'm guessing it is bad, as you said you cannot live alone. I know when my parents got the big D, us four kids hunkered down and took extra special care of my mom. My so called father was a mean and nasty drunk. It didn't bother me when he screamed at me, but we could not tolerate his horrible behavior toward my mom. After he left, none of us kids spoke to him, and that was 30 years ago, and now is is dead, TG. Of course he left us nothing while he was a rich man. Remember you must be number 1 in order to get better. And then you can form a plan. Pls feel free to send me a PM is you want to. I am not online that much because of my move, but I will check in. Are you in a holding pattern with the Q?  I hope you collect disability, as you deserve it. Just know that I will be thinking of you always, and you will be A number 1 to me.

 

Thanks, Betsy. I didn't know all that about your dad. I'm sorry you went through that. Sadly, no, I don't get disability. I did my full-time work before I had kids. The system only looks back 10 years to determine eligibility for disability. I was only working part time and mostly taking care of my son, who has significant learning disabilities. Saved the state a ton of money by doing all his tutoring myself, and this is the thanks I get. Kicked to the curb. At least he was learning when I was helping him, though we certainly butted heads as he went through adolescence. I think now he is trying to prove he is a man by distancing himself from me. It must be hard to be a young man whose father has abandoned him. Lives only a few hours drive away and hasn't seen his kids in over 2 years. My daughter says she wishes he would just disappear. My son, who used to say he didn't care, became very angry at his dad and said some nasty things about him right before he blew up at me, too. It was really ugly this time last year. I so much want the holidays to be better this year. My Q taper seems to be settling down and I'm getting more windows. Now if my primary would just stop threatening to cut me off and let me get through the holidays.....I think I'll play the holidays card with him when I see him. But it's true. I just can't face a big change or a rapid taper and high-stakes holidays all at the same time.

 

Hope you are doing OK. Some days we will have these chains off of us and be the real us again. Seems like a dream, but it's not. I like to read the success stories and believe we all be there, too. 

 

Betsy    :smitten:

 

Gard

[[be...]]

:angel:

[[Be...]]

Kids sure don't act like they did when I was a kid.  All us kids were raised to never talk back to adults.  It just didn't happen in my home or at school.  If it did there would be some serious hell to pay.  We'd be severely punished for talking back by parents and school teachers.  I know kids who got their mouths washed out with soap. 

[[ga...]]

Symptoms from my brief Seroquel taper seem to be continuing to settle down, knock wood!

 

Hope you're settling in, Bets, and the move hasn't ramped up your symptoms.

 

Wishing windows to all.

 

Gard

[[Ka...]]

Gard,

 

Thanks so much for the Welcome, I’m so new (started 8/5/16) to this I guess I’m trying to reach out to others as I really have no support from my family.  I see a therapist 1x’s a week and that’s it. 

 

I had to back my Seroquel back down to 200mg as 2 nights ago it caused horrible RLS (Restless Leg Syndrome), which I take Mirapex for, but due to the increase didn’t help.  RLS is horrible.  My psych wanted me on the 300mg, but I told him a couple years ago I wouldn’t take that much due to the weight gain.  Last night I took a sleeping pill, which I had stopped taking as it wasn’t working and slept thru the night.

 

I saw you posted about coping with your teenage children and wanted to reassure you it does get better.  I have 3 now grown daughters, but had grown up in a home with a very abusive alcoholic father so the goal was to survive, no role models and took the rejection from my own d’s to heart, not handling it well would be an understatement.  They have all since apologized for their behavior and 1 has 4 kids of her own, the oldest 2 and the youngest, now 30 is expecting her 1st in May.  My middle d was 19 and an unwed mom.  Lived with us and we helped raise my now 19yo granddaughter the 1st 3 years.  It was a rough go for many many years. 

Just hang in there, set limits, consequences and stick to them.  Tough love is very hard.  I have to say I haven’t read all you are going thru so maybe shouldn’t be giving you advice, but just wanted you to know there is hope.

 

What App do you use to help you get back to sleep at night?

 

Thanks again.  I don’t know what Club to join as I’m getting off of Klonopin using Valium.  I’ve been trying to get off the K for years and this is the 1st time I’ve gotten almost off.  I think I’m going to check out the Titration group since I’m down from 3mg to .5.  I overdid the Valium and need to restabilize before I make any more cuts to the K.

 

Good luck and feel free to vent about your d if you need to.  I’m retired, home alone with my H and get very lonely.  Doesn’t help that today’s a day from hell “weather wise”.

 

Thanks again,

Kassidy

 

 

[[ga...]]

Hi Kassidy. Actually, my kids are in college, but you'd think they are teenagers! My son has cognitive disabilities that make it hard to know how to deal with him. He's a young adult but emotionally is a teenager. He's really struggling.

 

I have the same problem with the Q worsening RLS. Just this week has been noticeably worse in spite of my partial taper. I take gabapentin, which worked for awhile but seems to have worn off.

 

The sleep app I use is called iSleepEasy. I keep it next to my bed. I put it on when I go to bed and when I have those creepy crawlies in the night and can't get back to sleep. It helps me shift my focus. I use the autogenic relaxation set to play 4 times and the music on all-night loop. There's no discernible melody to the music, just long slow rising and falling tones on string instruments, similar to if you were listening to waves at the shore. There are other guided meditations and other background sounds to choose from but I have settled on these and think I could no longer sleep without them. Not a perfect solution but much better than nothing. I need something peaceful to refocus on when the anxiety and the RLS kick in.

 

Sounds like you are doing well being all the way down to .5! Yes, titrating is probably a good idea at this point. I titrated last fall and then did a long hold and then titrated the Q down and then held again. Now I'm preparing to restart my L taper. Except I just started with a new therapist and she and my doctor want me to hold off until I get settled with her and through some of the tough stuff. I'm thinking about it. Maybe just the world's slowest micro taper would be OK. Knock wood!

 

Well, one way or another, we'll get though this. Baby steps. Snails. Turtles. Whatever it takes. These drugs will not beat us. (I say, sounding more brave than I feel. )

 

Gard

[[Ka...]]

Gard,

 

What is L?  I'm going to download that App now.

 

My girls didn't really mature, mature until mid 20's and middle d who I kicked out at 23 resented me I swear until maybe 4 or 5 years ago wasn't resentful until then and she's now 39.  It wasn't like we didn't get along, but she had a "I'm not your favorite issue".  Now her oldest is 19 (also has learning disabilities and is like a 16yo, although college is helping) and she's been going thru the teen years, plus has a 1yo.  I think her H helped her see how to parent better as she's now doing a better job and is acting like she's the perfect mom.  And she is a great mom. 

 

My youngest was somewhat the hardest as she was dx bipolar as a teen, even thou she was extremely gifted.  Took her forever to get thru community coll. and she transferred to the Univ, then nursing school and is now 30 and an ICU Charge nurse expecting her 1st.  She (like me denies being BP).  She's the one that mother's me the most and the one I confide in due to my questionable BP dx.  Sadly, once you're stuck with that dx. it's there for life.

 

I'm not worried about the Seroquel too much at this point.  Need to get off the K and can't believe my psych agreed in Aug. to try the Ashton Method with Valium.  But now I worry about getting off the high dose of Valium too.  I just want my life back.  I am starting to tell a difference, but definitely have moments of not being able to focus and I sew everyday.  No motivation, but did just burn myself out 2 weeks ago throwing a big family party.  I saw a pic from 2 nights ago from a party and my face looks so fat.

 

Also, lots of health problems and maybe looking at shoulder replacement in January.

 

Sorry to ramble.  Now to go and download your app.  Thanks,

 

Kass

[[ga...]]

L=Librium, similar to Valium

[[be...]]

Kids sure don't act like they did when I was a kid.  All us kids were raised to never talk back to adults.  It just didn't happen in my home or at school.  If it did there would be some serious hell to pay.  We'd be severely punished for talking back by parents and school teachers.  I know kids who got their mouths washed out with soap.

 

Same here. Keep your mouth closed  and ears open.

[[Ka...]]

Gard,

 

Just downloaded the isleepeasy app.  What a chore as Apple wasn't recognizing my password and last night I was brain dead and kept looking at my credit card wrong (ADHD) I guess.  Then I got locked out and they sent me a message it might take a couple days to get it straightened out.  Called today and 1st support person said there was no problem, then transferred me to a supervisor and he also couldn't help me.  Finally created a new id using my H's email and downloaded the isleepeasy bundle.  Not sure if it's a good deal, but since I don't sleep felt I need all the help I can get.

 

Went to bed at 10pm, cut my Seroquel back to 200mg, took a sleeping pill and other meds.  Go right to sleep and wake up an hour later with my legs going berserk from the RLS.  It's truly so horrible it's like somebody has turned wired electricity on to the nerves running thru my legs.  I can't stay in bed it's so agonizing.  Had 2 Mirapex left so took those and prayed and waited for them to kick in.  Hoping this App will help.  I truly believe the Seroquel has made the RLS so much worse, but the RLS and PLMD (Periodic Leg Movement Disorder) is something I've had since childhood.  I've actually gotten turned upside down in bed and my leg jerked one night (many years ago) and I kicked my deceased mother's crystal lamp on my bedside table.  I cried.

 

Again, thanks.  Don't know if I'll stay on the Seroquel Support group much as I need to focus on getting off the Klonopin and onto getting off the Valium.  I don't see a support group for that.  Do you know if there's one?

 

Saw my therapist today and cried as I told her Benzo Buddies is my only source of support to get thru this horrible detox.  So we're going to do EMDR next week on that.  I told her I need to give myself permission to take care of myself as I go thru this.

 

Thanks,

Kass

[[ga...]]

I'm not titrating the Q any more either, Kassidy. Concentrating on the L now. I don't think there's a specific group for crossing from K to V, but there's a whole sub-forum for crossing help called Substitution Taper Plans if you look on the home page.

 

Do take care of yourself!

 

Gard

[[Ka...]]

 

Thanks Gard,

 

I'll check it out.  Finally got Apple straightened out and was able to purchase the App. 2 nights ago woke up at 2am and App didn't help so I just got up.  Yesterday was a very very very bad day.  Wasn't even able to nap.  Had fight with H and did a really stupid thing.  Took 2mg K and 10mg V and a 5mg Norco just to stop the pain.  Still couldn't nap.  Think a lot was related to withdrawal, but can't do that.  Part of me was so depressed I wanted to die and take a major overdose, but did that in 2003 and promised myself I would never ever do that to my family again.  And I really didn't want to die, just stop the pain.  Well it did help and I started feeling better, started speaking to H. 

 

Posted on a couple other Support sites asking for help whether I screwed my detox up or not and they said "no", just continue doing what I've been dong.  Well was finally falling asleep around 9:30 - 10pm in chair.  Listened to your App, fell right to sleep, but woke up at 2am again.  This time I tried taking a sleeping pill (at 2am), but that didn't knock me out so I just rested the rest of the night and got up about 6ish.  Not sure what to do.  Don't want to increase the Seroquel and figured taking all those extra benzos would have knocked me out, but nope.

 

 

Kass

[[ga...]]

I've paused my Seroquel taper, so don't have much more to add to this thread. But I thought I'd share my tapering method in case someone else wants to try a suspension.

 

My tablet was nearly 25% Q by weight and my attempts at dry cutting were not working. I think it's because the more drug and the less filler, the more each little error is magnified. So I decided to do liquid titration using a water suspension. If you can afford OraPlus, you will get a more accurate suspension, but it is too pricey for me to use long-term.

 

I got most of my equipment on amazon.

 

I used:

200ml graduated cylinder

glass mortar and pestle with a pouring spout

different sizes oral syringes (depending how much I wanted to pull out)

a glass jar with a tight, screw-on lid

 

1. filled cylinder with 200ml water

2. poured about a third of it into the glass jar, set aside

3. put the tablet in the mortar and added a very small amount of water

4. used the pestle to thoroughly mash up the tablet until there was nothing but tiny, uniform specks

5. rinsed the end of the pestle by swishing it in the water in the glass jar and set the pestle aside (done with it)

6. carefully poured the pill water mixture into the glass jar

7. poured water from the cylinder into the mortar, swished and poured into the jar

8. repeated until mortar looked clean and all the water was in the jar, set cylinder and mortar aside (done with them)

9. screwed the lid onto the jar and shook it up and down vigorously for 10 seconds to create an even suspension

10. QUICKLY opened the jar, inserted the syringe into about the middle of the liquid, and pulled out my day's reduction (check youtube and practice with plain water until you are good at quickly pulling an accurate amount with an oral syringe)

11. pitched out the day's reduction

12. if you need to do this twice, you must re-shake the Q water to recreate the suspension

13. drank the dose from the jar

14. filled the jar about half way with plain water, shook it again, and drank the rinse water

15. cleaned and dried everything and put it out of site so I didn't have to look at it!

 

A helpful hint. I am a klutz and tend to spill. I did all the water part in and over a small, shallow aluminum pan that came with my toaster oven that I had never used so was clean. That way, when I spilled anything significant, I could pour it from the pan into the jar.

 

My understanding is Q is not very stable as a liquid, so I always did this shortly before I took my dose.

 

Thanks to Anne who taught me this method.

 

Gard

 

Edit: I think I ought to explain the difference between a solution and a suspension since this may have caused some confusion. Will do so in another post....