Valkyrja: coming off meds after 14 years

[Valkyrja]

Hello everyone and thank you for this amazing forum - it has given me a lot of information in these few days while preparing the life-changing events.

 

I’ve been mentally ill basically my whole life. I have a trauma background and at very young age I started to dissociate. At the age of 13 I got diagnosed with severe psychotic depression and got hospitalized for the first time. My diagnoses have evolved and changed throughout the years and nowadays my main issues are unspecified dissociative disorder, PTSD, OCD and anxiety disorder. I have not been depressed or psychotic for years. I’m 27 now, almost 28.

 

My medication has always been the same. We found a great combinaton right away. It was 2008 or 2009 when I started with fluexetine which was soon paired with extended release quetiapine. My dose is Seronil 40mg in the mornings and Seroquel XR 400mg in the evenings. I take Opamox 12.5mg ever now and then when I’m dealing with intense anxiety. Never longer than a week.

 

Fluexetine (Seronil) has stabilizing effect on me, I have nothing bad to say about it. I don’t remember having problems with starting the meds and if I ever forgot to take them, I only felt slightly restless but always took the meds normally next morning. I’m planning to get rid of them eventually but since they are also good for OCD, I will keep them with me a bit longer.

 

Quetiapine (Seroquel XR)… oh boy. Well, I have to admit it did my life A LOT easier back in teenage years when I was really depressed and suicidal. It practically saved my life. The relief didn’t come without horrible symptoms, tho. I remember being really tired for weeks after starting and only slept at home. The most noticeable effect of quetiapine is fatigue and really helps me sleep, but it also limits my life alot. I can’t stay up late because I need to make sure to take them at 10pm at latest or else the effect continues to the next day and makes me feel hangovery. I also absolutely hate the munchies it gives me after few hours and I eat too much, which has led to obesity. Overall quetiapine has way more downsides than benefits and I don’t need it anymore since I don’t suffer from conditions it was originally prescribed for.

 

I have been thinking getting off meds for few years but now I’m finally in a situation to actually do so. My life is pretty stable, I have weekly therapy and I have learned to handle myself very well over these 15 years. I don’t use alcohol or drugs. I consume caffeine on daily basis as coffee, tea or energy drinks. Mostly coffee, I love it. I exercise regularly at the gym or going for long walks.

 

I visited the doctor and he approved. The plan was to reduce Seroquel XR from 400mg to 200mg and it felt okay to me, but I thank myself for questioning everything and opened Google after. That way I found this forum and your experiences, decided to make an account and join the crew! I found information no one has ever told me before and honestly I’m scared now. I grew up with SSRI and antipsychotic drugs and I have no idea how much they have permanently altered my brain. I know it’s possible to fully recover, you guys have proven that to me, but it shocks me how lightly this topic is discussed by the healthcare professionals. So, next day I called back to my doctor and asked his permission to start tapering from 350mg (50mg is the smallest amount available here) and he agreed, tho he said there is no reason to drop it only 50mg at a time, I have Opamox for withdrawal. I disagree. The withdrawal could be anything and I don’t want to risk my health more than I already have. I want to see that day where I’m 100% clean from meds and living my best life.

 

TLDR; I’m 27 years old and having mental disorders but they do not need medical help anymore (expect my OCD). I have been on quetiapine and fluexetine for 14 years and decided to get off quetiapine first. Starting tapering Seroquel XR 400mg with 50mg, so I’m taking 350mg for two weeks, possibly longer. I’m afraid of withdrawal but aware and motivated. I’m sober, I exercise regularly but I drink coffee daily.

 

Tonight is the first lower dose, 350mg. It’s about 10am here now where I live and I’m taking the pills around 7-9pm. I hope I get some sleep at night.

[Valkyrja]

Just took the first reduced dose. I’m nervous but try to remain calm, I know if I think it too much I start to feel symptoms that really are not there.

[Valkyrja]

Woke up 8:30am. Didn’t have problems to get sleep at night. I’m a bit shaky, feels like something was vibrating under my skin. Small amounts of brainfog and nausea, nothing paralyzing. I hope next days and nights are the same so I can possibly drop another 50mg after two weeks like planned.

[Altostrata]

Welcome, @Valkyrja

 

Cutting 50mg from 400mg is only a 12.5% reduction. When reducing from high doses, often the first reduction is relatively easy. 

 

We recommend more gradual tapering after this, maintaining 10% exponential reductions (the amount of reduction keeps getting smaller), at intervals sufficient to watch for withdrawal symptoms and let your nervous system settle on the new dose. For most drugs, this is a month -- 2 weeks is too short.

 

Very careful reduction is particularly important for antipsychotics, as withdrawal symptoms may get you hospitalized. See Tips for tapering off quetiapine (Seroquel)

[LostInCanada]

@Valkyrja welcome to SA! Glad you are here. Your success and minimal symptoms will definitely depend on following the moderator's advice based on collective experience. There are sections here to recommend how to achieve 10% reductions from your current dose. Using a weigh scale like Gemini 20 on Amazon, a pill cutter and a razor blade or using gel capsules and a pill grinder will work. Or making a liquid solution that can keep in the fridge 3-4 days and using a syringe to draw the dose. 

Get familiar with the site and ask any questions here in this thread. 👍

[LostInCanada]

@Valkyrja opamax is oxazepam. It is a benzodiazepine. This is not a drug that you want to add to the list. It is highly addictive very quickly. Slowing down the taper is a much better solution.

[Valkyrja]

Thank you for such a warm welcome, @Altostrataand @LostInCanada! I appreciate your investment and time helping us. 

Imo my doctor has way too ambitious goal to get me off quetiapine. Like said, after two weeks the dosage is lowered to 300mg and then once a week by 50mg. I’m going to suggest that I do the reduction once in a month, or even every two months. I have read the topic Altostrata suggested about tips for tapering off quetiapine, I wish I had the chances do it like adviced but unfortunately I believe I’m not able to get prescription for immediate release quetiapine so I have to go with what I have. I’m trying to make my point tho, I want them to understand how severe the withdrawal could get and I don’t want permanent damage. I’m just afraid of not getting heard. 

[Faure]

Have you asked for a different prescription? You might like to show your doctor the guidance from the British Royal College of Psychiatrists which advocates the 10% taper. If I were you I’d insist on a prescription that will allow you to taper this way. 
 

Doctors do not understand about tapering. They like to diagnose any WD symptoms as relapse and give you more drugs. It is best to stay away from them. They won’t hold your hand day and night when WD hits, pay your bills when you can’t work, buy your food when you can’t afford it or go out to buy it. It is this serious. I hope you are able to get the prescription you need. 

Edited April 30, 2023 by Faure

[Altostrata]

5 hours ago, Valkyrja said:

unfortunately I believe I’m not able to get prescription for immediate release quetiapine so I have to go with what I have

 

Check with your local pharmacist.

[Valkyrja]

12 days after first reduction and I’m feeling better than expected. As physical symptoms I have headache and nausea everyday, loss of appetite, flu-like symptoms (hot and cold shivers, pain all over the body). Mental symptoms include increased anxiety in crowds, mood swings (mostly feeling like everything annoys me), brainfog (sometimes I feel like I don’t understand what I read or write, I keep forgetting little things). I feel like doing nothing but I take a walk everyday and try to stay on a healthy diet. I can still sleep which is the most important thing to me. I don’t sleep as much as before which is nice, still 7-8 hours per night.
 

Yesterday I reduced another 50mg since my symptoms were mild, so now dosage is 300mg. After this came the feeling of having a flu and pain all over the body. Everything is tolerable so far but the lower I go, the harder it gets.

[LostInCanada]

@Valkyrja I would suggest slowing down and waiting for your body to process the changes. You are having symptoms because the drop was too high. Now going to a lower dose before stability may hit you harder because the negative effects will compound. Can you get a scale or make liquid?

[Valkyrja]

@LostInCanada I’m going to stay on this dose for a month or two, this is all I can handle at once. Unfortunately I’m not able to get IR of Seroquel at the moment so I can’t make liquid or smaller cuts. Thinking about up-dosing (stabilizing?) it back to 350mg if I start to feel even worse and staying on it until I get a prescription for IR, but I try to avoid it. Also don’t want to use Opamox for withdrawal.

[LostInCanada]

@Valkyrja 
Tapering the extended-release form (Seroquel XR)
Since the lowest XR dosage available is 50mg, 50mg will be the smallest decrease you can make. If your starting dosage is 400mg or more, reducing by 50mg at a time may be tolerable for a few rounds.

Splitting an extended-release tablet appears possible (there are many reports on the Web of people doing this), but this compromises the extended-release quality, possibly resulting in immediate-release quetiapine. If you are used to the extended-release form, you may be sensitive to the "dosage dumping" resulting from immediate release of the drug.

[LostInCanada]

Note that if you cut up quetiapine XR or switch your entire dose from the extended-release form to the immediate-release form, you may need to take a half-dose twice a day or make other dosage adjustments up or down according to your reactions

I know some with other xr drugs that are having success cutting them and taking them in smaller doses during the day.

[Altostrata]

23 hours ago, Valkyrja said:

As physical symptoms I have headache and nausea everyday, loss of appetite, flu-like symptoms (hot and cold shivers, pain all over the body).

 

When does this start after a dosage reduction?

 

23 hours ago, Valkyrja said:

After this came the feeling of having a flu and pain all over the body. Everything is tolerable so far but the lower I go, the harder it gets.

 

We are aware of this with linear tapers like yours, which has been 50mg at a time. Your withdrawal symptoms may be mild now but they have a way of becoming much worse if you continue with the same tapering method. That is why we advise making smaller reductions as you go lower in dosage.

 

It's much better to taper gradually (not linearly) than to go up and down in dosage, especially with a long history of high doses of a high-risk drug such as quetiapine. Bouncing up and down could trigger a movement disorder or pseudo-psychosis symptoms.

[Valkyrja]

19 hours ago, Altostrata said:

When does this start after a dosage reduction?

 

Next day after reduction.

 

19 hours ago, Altostrata said:

Your withdrawal symptoms may be mild now but they have a way of becoming much worse if you continue with the same tapering method

 

Yeah, I'm aware of this. I'm not relying on good luck which I clearly had so far.

 

 

About withdrawal... how long after the serious withdrawal could come? Do they always come immediately? Is there a possibility that reduction starts great but after few weeks, or even months, it suddenly gets worse? 

[Altostrata]

3 hours ago, Valkyrja said:

Is there a possibility that reduction starts great but after few weeks, or even months, it suddenly gets worse? 

 

If you ignore the warning signs of mild withdrawal symptoms and continue to taper at the same rate, yes, withdrawal can "suddenly" get worse.

[Valkyrja]

34 minutes ago, Altostrata said:

If you ignore the warning signs of mild withdrawal symptoms and continue to taper at the same rate, yes, withdrawal can "suddenly" get worse.

 

 

I aknowledge that. I meant that even if I stayed on same dose for months, could it then get worse after a good period? That’s obvious if I keep dropping doses on same level like now it will get bad eventually. I’m not going to do that.

[Altostrata]

27 minutes ago, Valkyrja said:

I meant that even if I stayed on same dose for months, could it then get worse after a good period?

 

If you made too big of a decrease, you could get severe withdrawal symptoms.