Castor strange saga; trying to get off seroquel (alive)

[Altostrata]

It sounds to me like your system noticed the lack of 50mg at night. You might want to move 25mg back, for a total of 525mg at night, with 25mg in the daytime dose.

[Castor]

Hi Alto. I don't have any IR pills yet-- which I will need for tapering-- only the XR pills, and 50mg is the lowest increment of xr pills. 

 

I suppose I could split an xr 50mg pill in half, but I have no idea how that would be absorbed...I'd worry about a sudden spike and drop-off.

 

The other possible source of the problem is that I took 600mg the one night--5 nights ago-- then 500mg the next + 50mg in the morning the next. Maybe I'm feeling the aftermath of that.

 

What do you think? In any case, this is why I need to post regularly-- so I have a way to be accountable and stop looking for impossible shortcuts.

[Castor]

I was just prescribed 25mg IR pills. The symptoms today again "spilled over" and I am experiencing them during the day.

 

Not quite sure what to do... Might it still be a good idea to add 25mg at night and take 25mg in the morning?

[Castor]

This is Day 6 splitting my dose. Still having a spillover of symptoms into the morning and early afternoon, but they seem to get better as the day goes on and the nights have been far less harsh. In fact I seem to be getting more symptoms in the late morning and early afternoon than I typically have gotten between 10pm-2am. It's hard to see any rhyme or reason to it.

 

I can't wait to start tapering-- but not sure what method to use or how much. A friend here has had success cutting his neuroleptic every 5-7 days, others seem to have success micro tapering a small amount each day. I will definitely need to start fairly gradually, but I would also really like to move off this high dosage efficiently. 

 

Any and all feedback welcome.

[Altostrata]

How are you splitting the dose? Are you taking the IR tablets?

 

What is your current daily symptom pattern? Please describe the symptoms.

 

Read Tips for tapering off Seroquel (quetiapine)

[Castor]

Hi Alto. I have been splitting the dose so that I take 50mg in the morning and 500mg at night. This will be the 7th day doing that, after taking 550mg at night for awhile. So far I have not used the IR pills-- only the xr. 

 

My symptom pattern has shifted. It used to be worse at night, beginning a few hours after taking my dose. Lately nights are actually easier. I am instead getting head pressure, light-headedness, and some weird body stuff (feeling 'weightless') when I first wake up, then again in the late afternoon. 

 

Overall my sense is that symptoms are improving very slowly after the disaster of two weeks ago (when one night i took an amilitryptaline pill and another night I drank a coke). But maybe not ready to taper quite yet...

[Altostrata]

If I were you, I'd give the 50-500 split a week and see what it does. It will take some time to fully register in your system.

[Castor]

Really bad day and suffering a lot tonight.  Friday and saturday were pretty decent but yesterday was not so good and today worse.

 

Possible culprits? I have been taking my small 50mg xr "morning" dose at different times bc my sleep schedule is so off: 10am, 1pm, 2pm, 11am etc.

 

Diet has been poor the last few days-- eating lots of sugars carbs etc. 

 

Very little exercise.

 

Anyway, the feeling of swelling, inflamation,etc are horrible atm. Not going to hospital but feeling awful by myself. I'm literally pulling my hair hard to get relief from the feeling of irritation under my scalp. 

 

Any feedback or advice really really welcome. in agony.

[Altostrata]

Yes, you have to be regular in your dosing schedule. Eating junk food doesn't help.

[Castor]

A good friday and saturday, followed by a tougher last few days. Most concerning is a return of a "raw" head feeling-- like my brain doesn't have enough space to move. I had this same feeling much more intensely after my last too-rapid reduction, and it got so bad it forced me to updose (it was that or the hospital; and I can take a lot of pain). 

The last thing I wanna do is have to add more seroquel, but I'm concerned.

[Altostrata]

Be patient. Read The Windows and Waves Pattern of Recovery

[Castor]

Yeah, I think patience is what I need atm. Looking back there has been a lot of upheaval in the last 6-8 weeks. 

 

to summarize, during this time:

-failed reduction from 400mg to 350mg 

-one week of worsening w/d from that reduction, which I foolishly tried to grit teeth through

-finally had to undose to 550mg to get it under control

-foolishly tried Amitryptiline which created total chaos for a few days

-caffeine, more chaos for 4 days

-started splitting up dose to 500mg at night, 50mg in the morning

 

Writing this down just to remember why things may still be turbulent. I think i need another several days to start tapering. But in the meantime I need a plan to present to my doctor. The biggest issue I guess will be liquid versus compounded pills...I am not gonna start dropping 25mg at a time, and the 25mg pills can't be cut accurately. 

 

Sorry thoughts are scattered-- it's quite late.

[Castor]

So I need a plan to present to my doctor this week if I am going to start tapering. Seems like I have two choices: liquid microtapering or getting compounded pills. Checked with the compounding pharmacy and they can make tiny 10mg pills. 

 

Last night was rough-- I had a "freak-out" watching a movie and the somatic symptoms came fast and furious for a few hours.

Today and even tonight have been better.

[Castor]

I have had several really bad hours tonight. Like my brain is trying to swell but theres no room. Only thing that offsets it a little is pulling my hair and running a brush/comb through it. Tissues under my scalp feel so inflamed.

 

Bad-- the worst in a long time.

 

I have been going to sleep around 5- 5am and waking at 1 or 2pm. Not good, but hard to fix because if I don't sleep enough I feel very very ill. But I think I need to try something. Maybe I will stay up all night tonight and try to reset that way. 

 

How much can circadian rhythm effect symptoms? 

 

Worried this head swelling/inflammation if going to keep escalating the way it has tonight, and I will be back in the hospital again. The last place I wanna be. 

[Castor]

Slightly better day today. I moved another 100mg of my 550mg dose down to earlier in the day-- so I am now taking 150mg xr in the morning, 400mg in the evening.

 

I could still use some feedback about the best method to reduce Seroquel. Does water-tapering work for people with this drug?

[Altostrata]

See Tips for tapering off Seroquel (quetiapine)

[Castor]

A miserable day-- symptoms spilling into the day after a bad night.

 

The main symptom is a feeling right under the scalp-- as if the connective tissues were being stretched and inflamed. 

 

I think this was made worse by moving my dose around.

Wondering if I should updose but it might just kick the can down the road.

[Castor]

I need some help. 

 

Recently the symptoms I am taking have turned for the worse. Over the last few nights the burning under my scalp has gotten much greater. The tissue feels terribly inflamed. I know this is due to a long term process of being on Seroquel. It almost feels like tissue has been damaged or lost. In the last few nights I have also felt like I am unsafe and trapped by this drug and the burning sensations under my scalp. 

 

I feel like seeing a neurologist but it probably won't helped. I can't find anyone in withdrawal who has had this symptom, which scares me even more.

[Altostrata]

Burning scalp? Sure they have. See the Symptoms and Self-care forum http://tinyurl.com/3hq949z
 

[Castor]

Thank you, Alto. Missed that

[Castor]

In the last three days symptoms have started spinning out of control. I don't know what the cause is. I am starting to feel suicidal again after 3 years.

 

Burning in my legs, which I've never had. Nerve pain in my hand. My scalp, the top of my head, is on fire-- I have to pull my hair very hard to get relief. 

Weird feelings of rage and powerlessness. 

 

I haven't even begun tapering again since the updose several weeks ago. Maybe it wasn't large enough? I was also told by my new doctor that some genomic testing shows I have a problem metabolizing Seroquel. Could that be an issue?

 

I have survived two major suicide attempts and months of hospitlaization after a benzo c/t and failed reinstatement. This is bad and I need to do something.

[Castor]

Just want to make clear that by suicidal I mean suicidal ideation-- I love life and have no plans to end it. Also sorry if that upset anyone.

[Castor]

No updates for awhile so thought I'd write. Things have been very up and down. I stabilized from that last crisis, but then too quickly tried to cut 12.5mg at a time. That led to escalating symptoms and another updose of 50mg, so I am now on 600mg of seroquel xr-- 150 in the morning, 450 at night. The sad thing is I don't feel like my brain is ready to taper anytime soon, but I worry what will happen if I don't. I feel like the effect of the drug on my brain is bad. Anytime I exercise too hard I also get a return of very bad nerve pain and a feeling like my brain is compressed. I don't really know what to do.

[Altostrata]

See https://www.druginformer.com/search/side_effect_details/seroquel/burning%20sensation.html

 

http://doublecheckmd.com/EffectsDetail.do?dname=Seroquel&sid=11319&eid=3242

 

Did the burning sensation exist before you tried reducing Seroquel?

 

Have you tried reducing by an amount a lot smaller than 12.5mg?

[Castor]

Hi Alto, thanks for your reply.

 

I have not tried reducing by a lower amount yet. My plan was to hold until January then try to get pills compounded to 5mg or even 3mg, following the path of another SA member, Mkat. The trouble is that rather than stabilizing, I seem to be standing still and then occasionally a setback (exercise being the latest one). But maybe I just need to give it more time?

 

The burning sensation in my head had retreated for a bit before when I tried to make the 12.5mg reduction. It came back with a vengeance the night after that failed cut. It is a sort of "swelling," but over time it has gotten to feel like there is not enough tissue to swell properly-- as if the tissue around my brain has been badly damaged or destroyed...Sorry, it is very hard to put the sensation into words. 

[Altostrata]

Avoid strenuous exercise for the time being.

 

I'm not clear about whether you stabilized on 600mg, or why you need capsules compounded to 5mg or 3mg.

 

See Tips for tapering off Seroquel (quetiapine)

[Castor]

hi Alto. yes, definitely avoiding strenuous exercise.

 

I would say I was stable on 600mg after 4-5 days on it. then exercise ten days ago set me back a lot. the burning sensation and panic is not so bad until about this time of the night (11pm ET).

 

the idea of compounding the pills into small amounts was to make smaller drops. It is very hard to cut the tiny 25mg seroquel IR pills. It seems to have worked well for mkat, he has been my inspiration.

[Castor]

Reduced head pressure but still feeling horrific with a lot of suicidal thinking all day. This is my "stability" the new normal. I really need more support. It would help to be in contact with ppl who have been through this sort of hell w/antipsychotics (high dose/complex med history) and recovered, or who are still struggling with it. I just have no hope I can taper, I feel like my brain has become so hyper-sensitized to the drug it will be impossible to reduce it never mind get off. I guess we will see. I am normally a really hopeful optimistic person, I hate this fatalism but I can't seem to turn it off.

[Castor]

I continue to struggle on 600mg seroquel xr. Daily living has become very difficult and I am spending more time with family to feel safe. I get a lot of suicidal thoughts throughout the day, especially at night, in addition to head pressure and the terrible fog. Instead of stabilizing, I definitely seem to be getting worse while holding this dose, including some akathisia, which is new. It is not terrible but definitely present at night and when I wake up in the morning. I took 40mg propranolol tonight because it was escalating. I have also let my sleep cycle slip to where I am sleeping 2am-10am and even 11am instead of midnight to 9am. I need to change this, I think it might help the akathisia. Chinese medicine says the hours 11pm to 3am are crucial for healing sleep, and i tend to agree from experience. At least for me that fits.

 

I think I should start my taper as soon as sleep is back where i want it. I am not going to get more stable on 600mg. Maybe making very tiny reductions might help my morale. I think I am going to ask my pdoc for an RX of compounded pills, so I might be able to drop 2mg or 3mg each reduction. I don't trust myself making a liquid suspension, I am too impaired right now unfortunately. Thank you for reading.

[Altostrata]

The akathisia is not good.

 

You can combine standard dosages, for example 400mg XR +150mg XR, with compounded amounts to taper.

[Castor]

The akathisia is not good.

 

You can combine standard dosages, for example 400mg XR +150mg XR, with compounded amounts to taper.

 

 

Yes, that is my plan. Perhaps 400mg XR +150mg XR + 25mg IR + 2.5mg capsules

[Castor]

Doctor agreed to write an RX for compounded capsules. My plan is to start by reducing 3mg a week: .5% of my total dose of 600mg Seroquel XR. 

 

I really, really hope this works, it feels like my last chance to get off this poison.

[Altostrata]

 

The akathisia is not good.

 

You can combine standard dosages, for example 400mg XR +150mg XR, with compounded amounts to taper.

 

 

Yes, that is my plan. Perhaps 400mg XR +150mg XR + 25mg IR + 2.5mg capsules

 

 

Sounds good for the first round. Then, if you have 25mg IR tablets, you could make a liquid from them and taper that in the next several rounds.

[Castor]

Very rough time but still planning on starting reductions left week. Holding at 600mg has been making me sicker, I think the toxicity is too much.

 

Pdoc and I settled on 3mg a week reduction using compounded, sustained-release Seroquel capsules. Hopefully this .5% cut/weekly will work and I can cut by a bit more in the months ahead.

[Gibby]

Doctor agreed to write an RX for compounded capsules. My plan is to start by reducing 3mg a week: .5% of my total dose of 600mg Seroquel XR. 

 

I really, really hope this works, it feels like my last chance to get off this poison.

 

There is always another chance, Castor! 

[Castor]

Three years ago I was trying to taper valium after a reinstatement and when I reached a low dose too quickly I tried to updose. My brain rejected the updose which led to an extreme paradoxical reaction. i felt I had been poisoned and became acutely suicidal. I was hospitalized and put on Seroquel against my will. 

 

Now three years later I feel like the same thing is happening with Seroquel-- I am on 600mg XR. I have deteriorated gradually and its seems the drug is becoming toxic. I feel an exposure to it at a visceral level that feels poisonous. It has not reached the level of what happened with the valium 3 years ago but it seems to be approaching that direction. Each of the last three nights I have had "episodes" characterized by sweating, delirium, confusion, muscle stiffness, and s. ideation. I have not reached an acutely suicidal state but am very concerned. 

 

A friend helped me write this, I would not have been able to do it on my own. Please help with any advice you can. My plan was to start tapering 3mg a week starting Monday but I feel the exposure to the drug may mean I should try to come off much more quickly. I feel like I am running out of time and I need a plan to try to avoid the worst.