Matt7777: Seroquel / quetiapine

[matt7777]

My doctor told me that she might be able to switch me from the Seroquel dose I am on (37.5mg) and put me on Elavil (25mg). She would give both to me at the same time, and then taper back the Seroquel over a week.

 

Has anyone heard of such a thing? Does it work?

[ChessieCat]

I suggest you do some research.  Use the  Drug Interactions Checker and type in both drugs because there will be a period where you are taking both drugs together.  Click on the "Switch to professional interaction data" to see more info.

[matt7777]

2 hours ago, ChessieCat said:

I suggest you do some research.  Use the  Drug Interactions Checker and type in both drugs because there will be a period where you are taking both drugs together.  Click on the "Switch to professional interaction data" to see more info.

 

Thanks for the drug interaction link. Have you heard of this approach, getting off Seroquel and being switched to a new drug like Elavil?

Is it usually successful?

[ChessieCat]

SA is a site for reducing or going off psychiatric drugs.  We generally do not make recommendations about what drug to change to.

 

Changing to a different drug may not be successful.  You might get withdrawal from the old drug and start up/side effects/bad reaction to the new drug.  You will not know what is causing any issues.

[matt7777]

59 minutes ago, ChessieCat said:

Changing to a different drug may not be successful.

 

Thanks for the insight on the risks.

 

Right now, I just had a failed taper on the Seroquel. Plus I am having increasing muscle twitching, in my arms and legs. The idea of replacing drugs to me is definitely interesting given the hell of trying to get off Seroquel.

[ChessieCat]

I don't think you can call it a failed taper.  You have taken a large number of different drugs in a short period of time during 2018.  Ciprofloxacin and Augmentin (antibiotics x 2 different types), sedative-hypnotic (Ambien) plus benzos (Ativan, Clonazepam) and antipsychotic* (Seroquel).  You are also taking Synthroid (a hormone), ceased taking Alfuzosin ( α₁ blocker class) and started and stopped Flomax (alpha blocker).

 

I imagine that your nervous symptom has taken a battering and the symptoms you are experiencing could  possibly be your brain and body letting you know that it is not happy.  I doubt very much that changing to yet another different drug is going to help the situation.  I suggest you make a chart on paper or in Excel from July to Dec 2018 so you can see the drug changes you have made.  A picture can be worth a thousand words.

 

* see information about sedation/antipsychotic here

 

Edited December 31, 2018 by ChessieCat
added * about Seroquel

[ChessieCat]

3 hours ago, ChessieCat said:

an antipsychotic (Seroquel)

 

You might find this interesting.  At lower doses Seroquel is sedating.  At higher doses it is an antipsychotic.

 

https://thelastpsychiatrist.com/2007/07/the_most_important_article_on.html

[matt7777]

10 hours ago, ChessieCat said:

I imagine that your nervous symptom has taken a battering

 

I really appreciate your interest and empathy in my situation. Yeah, it has been a tough road. The insomnia that is brought on by the tapering is a concern. The Seroquel has been really hard to get off. I was thinking if the doc was even able to switch me over to Elavil, that might be easier to taper off. Or if I indeed needed something long-term to deal with low Seratonin, maybe Elavil would be a better long-term solution. Realistically, I don't even know if it is an option.

[ChessieCat]

6 hours ago, matt7777 said:

Or if I indeed needed something long-term to deal with low Seratonin

 

Looks like you might be believing the "chemical imbalance" myth.  See:  again-chemical-imbalance-is-a-myth-stop-the-lies-please

 

On 12/22/2018 at 5:36 AM, Gridley said:

10mg Melatonin is a very high dose of Melatonin for someone in WD.  At this high dose it can have a paradoxical effect and cause you to stay awake.  We recommend starting with a dose of 0.25mg (1/4mg).  I started with 0.5 and slept better when I went down to 0.25. 

 

Did you ever reduce your Melatonin?

 

On 12/23/2018 at 6:00 AM, matt7777 said:

I tried CBD oil for the first time last night. I was dealing with a two-day insomnia bout related to my Seroquel taper.

 

You've also added in another thing.

 

6 hours ago, matt7777 said:

The insomnia that is brought on by the tapering is a concern. The Seroquel has been really hard to get off.

 

You went from 25mg to 50mg and then straight to 25mg?

 

1 Aug to 20 Sept  - 25mg

3 Oct to 30 Oct     - 50mg

1 Dec to 31 Dec   -  25mg

 

If the insomia worsened after reducing from 50mg you might find that taking a tiny bit more might help.  However, if you are still taking a high dose of melatonin, then it may be better to work on reducing that first.

 

Tips for tapering off Seroquel (quetiapine)

 

Keep it Simple, Slow and Stable

 

 

 

 

 

 

 

 

[matt7777]

Yes, I was at 25mg starting Aug 1. Then the doc took me off it cold turkey Sept 20th. Then I was on benzos to try to make me sleep because I got insomnia when I came off of it. For two weeks, the benzos only allowed me to sleep for several hours a night. Then I checked myself into a rehab facility. The doctor there put me on 50mg of Seroquel. Then I tapered down from there to 25mg. I managed to get down to 21mg until I crashed...eg insomnia. Out of desperation, I am back up to 37.5mg. I tried to stabilize at 25mg but no luck.

 

On the CBD oil, I only tried that for two nights. I even did one night of ThC. In retrospect, mixing in different drugs was probably a bad idea.

 

I tapered down on the Melatonin last night from 10mg to 6mg. I managed to sleep intermittently through the night.

 

 

[ChessieCat]

53 minutes ago, matt7777 said:

I tapered down on the Melatonin last night from 10mg to 6mg. I managed to sleep intermittently through the night.

 

That sounds like an improvement.  I suggest that you work on gradually getting that reduced a bit more.  That may help things.

 

56 minutes ago, matt7777 said:

Yes, I was at 25mg starting Aug 1. Then the doc took me off it cold turkey Sept 20th. Then I was on benzos to try to make me sleep because I got insomnia when I came off of it. For two weeks, the benzos only allowed me to sleep for several hours a night. Then I checked myself into a rehab facility. The doctor there put me on 50mg of Seroquel. Then I tapered down from there to 25mg. I managed to get down to 21mg until I crashed...eg insomnia. Out of desperation, I am back up to 37.5mg. I tried to stabilize at 25mg but no luck.

 

We need to see the dose changes of Seroquel clearly and easily in your drug signature.  It means we don't have to read by through your posts trying to find the information.

 

Seroquel:  DOSE, DATE to DATE; DOSE, DATE to DATE: DOSE, DATE to DATE.

 

Please include the 0mg, DATE to DATE in the above.  You only need to add the year to the first date and then use 2019 for the first date when you make a change.

[matt7777]

ok...will do.

[ChessieCat]

I hate to sound picky, I'm a typist so like consistency.  🙄   I've used the info you provided and simplified it for easier reading.

 

My apologies, I've just seen that I said DATE to DATE in my instructions.  However, the dose change date indicates the end of the previous dose so it's not necessary.

 

Seroquel:  25mg, 1 Aug 2018; 0mg 20 Sept; 50mg, 3 Oct; 21mg, 21 Dec; 37mg, 31 Dec;

 

The next date you add will need the year 2019 added to it.

[matt7777]

5 minutes ago, ChessieCat said:

I've used the info you provided and simplified it for easier reading.

thank you!

[ChessieCat]

Ah, thank you.  Much easier to read.   My perfectionism appreciates it.   😊 

[Carmie]

Hi Matt, 

 

I’m sorry you’re going through withdrawals because of Seroquel, it’s an awful drug. Just wanted to tell you I’m tapering off the same drug. 

 

You’ve made so many changes with it, it might take you quite a while to stabilise, maybe not. No one knows, our bodies are all different . I just made a change to a different formula n it took me over three months to stabilise, but stabilise I did. Windows always eventually open up after waves. 

 

Wishing you all all the best in your recovery💚

 

 

[matt7777]

4 hours ago, Carmie said:

Seroquel, it’s an awful drug

 

Thanks Carmie! I really appreciate you reaching out. I am really scared about the side effects. I have had muscle twitching in my legs. The last couple of nights I have had it in my right rib cage and left bicep. My primary care doc told me she might be able to transfer me to Elavil from Seroquel, doing a taper over a week. Given how challenging it has been to sleep at all when either tapering too fast (or when I was taken off cold turkey), I wonder if it would be even possible for the Elavil to supersede the withdrawal effects of the Seroquel. At this point, I would be willing to put up with the side effects of Elavil than Seroquel. Perhaps the Elavil would give me more time to get off of it without serious side effects.

4 hours ago, Carmie said:

I just made a change to a different formula

Could you please tell me more of switching to a different formula, what you mean by this?

 

I would love to learn more about what your experience has been like getting off Seroquel, how slow a taper, and what side effects you experienced.

[Altostrata]

On 12/31/2018 at 9:05 AM, matt7777 said:

 

I really appreciate your interest and empathy in my situation. Yeah, it has been a tough road. The insomnia that is brought on by the tapering is a concern. The Seroquel has been really hard to get off. I was thinking if the doc was even able to switch me over to Elavil, that might be easier to taper off. Or if I indeed needed something long-term to deal with low Seratonin, maybe Elavil would be a better long-term solution. Realistically, I don't even know if it is an option.

 

I have never heard of substituting Elavil for Seroquel. They are two entirely different drugs.

 

As Chessie pointed out, you cannot say your Seroquel taper has failed. Your history shows a lot of changes in dosing. When you make a change, you make a very small one, then observe the results. Your experiments have not been systematic. You need patience to get off drugs properly.

[ChessieCat]

1 hour ago, Altostrata said:

When you make a change, you make a very small one, then observe the results.

 

Keep it Simple, Slow and Stable

[Carmie]

Hi Matt, 

 

Thanks for your PM, it’s best to keep the information about your medications on your actual thread. By changing formula I meant I changed to water titrating compounding capsules. It’s wasn’t a good idea though, and I’m going back to water titrating the original tablets as they are much more accurate. Brassmonkey brought this to my attention. I had already water titrated the 25mg tablet down to 7.5mg and then got the compounding pharmacy to make me 7.5mg capsules. Now I have to crosstaper back to the original tablets some time this month. 

 

I’m not sure how long it will take me to recover from the crosstaper. Maybe another three months, maybe not? Who knows? Withdrawals are all over the place, there’s nothing linear about them.

 

The problem with you wanting to change from Seroquel to Elavil is that you will probably destabilise your system even more. When you swap over meds, it’s like going cold turkey with the drug you get rid of, and then having to cope with the new drug. I definitely wouldn’t be changing to Elavil. Like Alto, I haven’t heard of a Seroquel to Elavil switch. 

 

Like you, trying to get off Seroquel is not easy. I’ve managed to get myself down from 300mg to 7.5mg. I couldn’t escape withdrawals though, I went through some pretty bad withdrawals, and if I go too quick even now they get pretty bad. Even if I go slow I still get withdrawals, they are just a bit more bearable. There’s no way around withdrawals if you want to get off meds. It’s just something we have to go through. We have to just continue to put coping strategies in, and take each moment as it comes.

 

When I first started tapering off Seroquel I just used a pill cutter, I didn’t know anything much about tapering then. I just kept cutting the meds to the next smallest amount and then held until the waves stopped and then cut again. I don’t have records of how much I cut each time etc though. 

 

Once I got to the 25mg tablet and I eventually started water titrating it so it’s more accurate and I can do tinier doses.

 

It’s not easy getting off Seroquel, but we can do this. We just have to go really slow. You need to stabilise before you can taper again, and then cut by no more than 10% a month. I can only do around 4% to 5% now that I’m on the lower doses. It will take me a really long time to get off the last 7.5mg because 5% is only a small amount taken off each time.  I won’t be jumping off Seroquel until I’m down to 0.0something or even less. 

 

Hope all goes well with your tapering. You will eventually stabilise but you need to be patient. It can take a while as your system sounds really destabilised from all your changes. 

 

Take care💚

 

 

[matt7777]

5 hours ago, Carmie said:

It’s not easy getting off Seroquel

 

If I am having a serious physical reaction to Seroquel, what am I suppose to do? I mean, my legs are seizing up on me making it hard to walk and I have twitching in my upper body that is very uncomfortable.

[Carmie]

1 minute ago, matt7777 said:

 

If I am having a serious physical reaction to Seroquel, what am I suppose to do? I mean, my legs are seizing up on me making it hard to walk and I have twitching in my upper body that is very uncomfortable.

 

Hi Matt, 

 

I haven’t had this symptom. There is another member here though, @neroli, who struggles with her legs as well. She’s on different meds though I think. 

 

I’ve had the twitching though, and akathisia, and feeling like I’m being electrocuted, and tingling etc. they were all withdrawal symptoms that eventually settled. 

 

Have you had a look at the Glenmullen’s list of withdrawal symptoms, there are soooo many symptoms we can get from withdrawals as everything is connected to our CNS. 

 

You have made so many many changes, it will take a while to stabilise. ChessieCat will send you a link to the withdrawal symptoms one can get. I’m working from my tablet n I’m not computer savvy. You may have already looked at symptoms but have another look anyway. 

 

I’ve had a myriad of symptoms in withdrawals, including a burning mouth for months, toothaches, sore throats, jaw pain, earaches and the list goes on. 

 

I’ll leave your question with the other mods though. Maybe they may have some other thoughts too. 

 

Im so sorry you are going through this, sending hugs🤗

 

 

 

 

 

[ChessieCat]

Dr Joseph Glenmullen's Withdrawal Symptoms

[ChessieCat]

On 12/2/2018 at 12:39 PM, ChessieCat said:

So that the mods can assess your situation please keep daily symptoms notes on paper and post them in here in your intro topic.

 

An example of what is needed:

 

6 a.m. Woke with anxiety
8 a.m. Took 2.5mg Lexapro
10 a.m. Stomach is upset
10:30 a.m. Ate breakfast
11:35 a.m. Got a headache, lasted one hour
12:35 p.m. Ate lunch
4 p.m. Feel a bit better
5 p.m. Took 2.5mg Lexapro
6 p.m. Ate dinner
9:20 p.m. Headache
10:00 p.m. Took 50mg Seroquel
10:20 p.m. Feeling dizzy
10:30 p.m. Fell asleep
2:30 a.m. Woke, took 3mg Ambien (NOT "took 1/2 tablet Ambien")
2:45 a.m. Fell asleep
4:30 a.m. Woke but got back to sleep

 

Have you been keeping any notes in the above format?  If yes, please provide the last week.  If no, please keep them for the next 3 days and post in your Intro topic.  The mods will assess your notes to see if they can notice anything.

[matt7777]

4 minutes ago, ChessieCat said:

If yes, please provide the last week. 

 

 

Date         Seroquel        Quality of Sleep     Comments

Dec 26:          25mg          3/10                      I go to bed nightly at 10pm. Fell asleep in the morning twice for 1-2 hours. During day, twitching muscles and headache. Day #6 of similar quality of insomnia which I attempted to taper from 21mg to 20mg. Tried to stabilize at 25mg. For the last two months, taking 10mg of Melatonin nightly. Any quality of sleep rating at 5 or above means I actually feel rejuvenated from the sleep.

Dec 27:         25mg         2/10                         Took 10mg of Ambien at 2am when couldn't sleep, then "Slept" 3-4 hours. Ambien made me feel sick the following day. It was one of my failed one-off attempts to mix another drug in.

Dec 28:         37.5mg      3/10                         Slept 3-4 hours straight and awoke at 4am for no reason. Couldn't sleep after. Little dizzy and 'off' after getting out of bed. I felt anxious during the day.

Dec 29:        37.5mg      5/10                          Slept four hours from 11pm. Fell asleep again at 5am. The first four hours of sleep was a 'fog' and the next two hours of sleep was refreshing.

Dec 30:       37.5mg      6/10                          Slept the first four hours. Went back to sleep after. Twitching muscles during the day getting worse. Feeling it in my left bicep and right lat/ribs/chest.

Dec 31:      37.5mg      5/10                             Tapered Melatonin from 10mg to 6mg. Twitching muscles at night in left bicep bad and right lat/ribs/chest, keeping me up at night. Twitching legs throughout the night (a nightly occurrence for me).

Jan 1:       37.5mg        6/10                            Got up 3 or so times, fell back to sleep. Twitching right lat/ribs bothersome at night. Mild headache during the day, legs wobbly and cramped making it hard to walk. 

 

[Altostrata]

On 12/2/2018 at 6:38 PM, matt7777 said:

Thanks Songbird. I appreciate you sending the attachment. Do you know if the leg muscle chirping or twitching to be a pretty normal side effect to Seroquel?

 

On 12/21/2018 at 10:22 AM, matt7777 said:

Matt's Seroquel Log: Dec 1 to Dec 21

(*10mg MelatoninXR)

 

           Amount*                          Sleep Quality                  Comments

Dec 1: 25mg                              5/10                                 Since I was at or above  5/10, I felt some rejuvenation after the sleep

Dec 2: 25mg                              6/10                                 Leg muscle twitches

Dec 3: 25mg                              7/10                                 Leg muscle twitches

Dec 4: 23mg                              3/10                                 Woke up several times for no reason. Fragmented quality of rest.

Dec 5: 23mg                              3/10                                 Awoke 445am. Couldn't return to sleep.

Dec 6: 23mg                              6/10                                Awoke 3am. Managed to fall back asleep

Dec 7: 23mg                             5/10                                 Had difficulty sleeping from congestion/sneezing from cold

Dec 8: 23mg                              7/10                                Sick from cold. Awoke but could go back to sleep.

Dec 9: 23mg                              4/10                                Sick from cold. Up every couple hours with cold symptoms

Dec 10: 23mg                           4/10                                Went to bed at 10pm but couldn't fall asleep until midnight

Dec 11: 21mg                           4/10                                 Sick. Woke up several times.

Dec 12: 21mg                           5/10                                 Did a Sleep Study with gizmo on to see if I need CPAP. (Need CPAP)

Dec 13: 21mg                           5/10                                 Awaken a number of times. Fell back to sleep

Dec 14: 21mg                           5/10                                 Awaken 4am. Couldn't fall back to sleep.

Dec 15: 21mg                           6/10                                Slept okay while sleeping at friends place. Woke up and fell back to sleep.

Dec 16: 21 mg                           7/10                                Awaken twice but fell back to sleep.

Dec 17: 21mg                           4/10                                Awoke 4am. Couldn't fall back to sleep.

Dec 18: 21mg                            7/10                               Slept good. Had colonoscopy earlier in day, under. Took more to put me under.

Dec 19: 21mg                           6/10                                Awoken several times, fell back to sleep

Dec 20: 20mg                           2/10                                Slept for 2-3 hours, then couldn't fall back to sleep.

Dec 21: 21mg                          0/10                                 Couldn't sleep all night. Even tried NightQuil. Feels like Insomnia carried over from 20th.

 

Any advice what to do??? I tried tapering to 20mg on Dec 20th. Slept really bad. So I went back up to 21mg last night. I didn't sleep at all!

 

Did the twitching get worse from Dec 2 to Dec 21? Did it happen every day?

 

What drugs did you get for the colonoscopy, and what dosage?

 

I see you have increased your Seroquel dose to 37.5mg on Dec. 28, despite the concern that the twitching was drug-related. Has the twitching gotten worse since you increased to 37.5mg?

 

Why did you choose to increase to 37.5mg rather than, perhaps, 26mg or 30mg?

 

On 12/22/2018 at 11:00 AM, matt7777 said:

I tried CBD oil for the first time last night. I was dealing with a two-day insomnia bout related to my Seroquel taper. The CBD oil is awesome! It is nice to know there are adjunctive medicines out there to help!  See tip #6 in link

https://www.kevinmd.com/blog/2018/03/10-tips-help-patients-benzodiazepine-withdrawal.html

 

Why did you not continue with CBD oil rather than increase your Seroquel dose to 37.5mg?

[matt7777]

1 hour ago, Altostrata said:

Did the twitching get worse from Dec 2 to Dec 21? Did it happen every day?

 

Yes, the twitching got worse from Dec 2 to Dec 21. I experienced the twitching everyday/night.

 

1 hour ago, Altostrata said:

What drugs did you get for the colonoscopy, and what dosage

I am not sure the name of the drug they used. It is pretty common one though. I think it was the one they gave Michael Jackson.

 

1 hour ago, Altostrata said:

see you have increased your Seroquel dose to 37.5mg on Dec. 28, despite the concern that the twitching was drug-related. Has the twitching gotten worse since you increased to 37.5mg?

 

Yes, I increased the dose to 37.5mg just so I can sleep. I was desperate after dealing with sleep deprivation.

Yes, the twitching has gotten worse since the drug increase. In fact, my legs feel like knots and that I am losing strength to them.

1 hour ago, Altostrata said:

Why did you choose to increase to 37.5mg rather than, perhaps, 26mg or 30mg?

In retrospect, maybe I should have increased it less.

 

1 hour ago, Altostrata said:

Why did you not continue with CBD oil rather than increase your Seroquel dose to 37.5mg?

I didn't continue with the CBD oil because the next night I used it, I didn't sleep. And I doubled the dosage of CBD oil. So thinking it was ineffectual, I stopped it.

[Altostrata]

It's pretty clear you are having a serious adverse reaction to 37.5mg Seroquel. If I were you, I'd back down to 25mg immediately.

 

Even at 25mg, there was evidence of this adverse reaction, but milder. Unfortunately, if I were you, I'd accept that I need to go off Seroquel. There is no easy substitute as all the antipsychotics are liable to cause the same serious adverse reaction.

 

The drug you might have gotten for your colonoscopy sounds like propofol. This is okay on its own, but often doctors give people a benzo for a colonoscopy. Are you sure you did not also take a benzo?

 

I can understand how awful the sleeplessness has been and why you have been making fairly frequent drug changes to address it, but you need to stop this. Please be aware that when your nervous system is sensitized, more drug is not better. In fact, less CBD oil might have worked rather than more, same for melatonin.

 

Also, it appears you started taking Seroquel to treat benzo withdrawal insomnia, is that correct? You may still be in somewhat of a state of benzo withdrawal.

 

You might have a rough 2 weeks ahead as we find ways to improve your sleep. Please remind yourself that while sleeplessness is grueling, people do get past it. We have many people here who have experienced drug-induced sleeplessness and withdrawal insomnia and improved.

 

Please install the sleep hygiene measures in

 

Tips to help sleep -- so many of us have that awful withdrawal insomnia

 

Waking with panic or anxiety -- managing cortisol spikes

 

What is the sleep cycle?

 

Melatonin for sleep: Many people find it helpful

 

TV or computer use in evening can disrupt sleep: Bright light signals the brain that it's daytime

 

Please let us know how you are doing.

 

[matt7777]

On 1/2/2019 at 1:52 PM, Altostrata said:

Please let us know how you are doing.

 

Thanks Alto. I managed to get a doc(psyc) appt to tell her about my twitching/leg cramping etc. I found this simple article on these drugs and impact on adverse movement disorders.

 

http://www.minddisorders.com/Kau-Nu/Medication-induced-movement-disorders.html

[Altostrata]

There really is no remedy for this adverse effect but to go off Seroquel. Reducing the dose may make it milder, but it is dangerous as it can become permanent.

 

If I were you, I'd back down to 25mg immediately.

[matt7777]

16 minutes ago, Altostrata said:

 

If I were you, I'd back down to 25mg immediately.

 

I have to be able to tolerate (ie sleep) the drop. I am at 33mg at the moment, barely sleeping.

[ChessieCat]

4 hours ago, Altostrata said:

 

it is dangerous as it can become permanent.

 

 

You need to weigh up the pros and cons.

[Altostrata]

Sorry to have to say it, but even a benzo is safer than Seroquel. Do not risk permanent tardive dyskinesia.

[matt7777]

My doctor wants to put me on .1mg of Clonidine, in order for me to sleep better and to help me to taper the Seroquel down easier. Presently, the Seroquel is not doing the job of putting me to sleep so well.

 

Any feedback on the pros/cons of Clonidine?

 

Thanks!

 

[Gridley]

Here is an SA link about Clonidine:

Antihypertensive Clonidine Withdrawal: Psych Meds not the only ...

[ChessieCat]

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