JMac1234: cold turkey Seroquel / quetiapine

[JMac1234]

Hi all.

 

I've been reading lots over the past six months from this forum, so let me start by saying thank you. For anyone sharing your story, the ups and the downs, it truly is helpful and encouraging to read.

 

My story starts in April 2020 with the initial onset of symptoms. Since then they've followed the windows and waves pattern and are best described as adrenaline rushes that last for days or weeks at a time.

 

I regularly speak in public, and the physical symptoms that I have almost entirely mimic the feeling I get right before speaking to a large crowd.

 

Heart palpitations
Loss of appetite
Very fidgety
Sweating
Hot flashes
Tightness in my chest
Sometimes a salt craving
Low libido
Can’t rest -- Unable to nap

 

Mentally it’s uncomfortable… hard to focus, can’t be present for my kids, often need to use TV shows or podcasts to distract myself. I would later find words to describe the mental symptoms that were also part of it all...

 

Feeling of unreality or detachment

Unable to feel positive emotions

Unable to imagine or dream about the future
Fast cycling thoughts

 

Initially my GP diagnosed me with Panic Attacks, however they seem to differ from panic attacks because they lack any sense of impending doom or danger or fear of loss of control or death.

 

My symptoms also don’t end. They usually subside in the evening, but I’ll wake up early with them. I'm fairly confident that this corresponds with the cortisol spike that many people experience.

 

Next was a Generalized Anxiety diagnosis (fall 2020), but again, I don’t actually have any worries or anxieties. I did a full round Cognitive Behavioural Therapy with two different therapists and both discharged me because they said what I was experiencing was physical/biological and that they had given me everything they could. To be fair, I now will sometimes have worries or anxieties about what I'm feeling, but they aren't based in any of my life circumstances other than the symptoms. My life is great and outside of this experience I'm ridiculously positive and optimistic.

 

So I’ve always wondered if there was a way that I overproduce adrenaline or if it's related to histamine. Because it seems like the only medications that have been helpful have had sedating/anti-histamine qualities (Benadryl and Seroquel). I did receive 30 Clonazepam pills (0.5mg) in 2020 and then some Propranolol in 2021. Both were used 'as needed' and I took roughly 15 of each of them overall.

 

Over the past two years I've tried all the things. Naturopath, supplements, therapy, massage, chiro, acupuncture, gluten/dairy free, CBD, keto, etc.

 

I went from my family doctor to a psychiatrist (June 2021) and jumped from Escitalopram to Lurasidone to Seroquel. All changes were either immediate or phased over a few days.

 

In November 2021 I was frustrated and decided to quit Seroquel. I figured I could always go back on and the psychiatrist was pretty open to taking me off it when I was feeling better.

 

My symptoms were never solved by the medication, so I wondered how much the medication might be triggering the ongoing symptoms. When I had waves of symptoms in December I signed up for this site and have been the beneficiary of all y'alls wisdom since then.

 

I think the last six months have followed a fairly commonly described pattern of waves and windows, with each window getting better. I finally decide to post today because I just entered a wave that feels stronger than the past few (seemingly I hit a wave once every two weeks now). The step back is frustrating and makes me second guess so many things, which is why I feel it helpful to anchor into this community more.

 

I wish I had of tapered the drugs I was on. I also know that fish oil and magnesium are the two commonly suggested supplements. I've used them lots over the past couple of years, but stopped them during a wave in March. Waves usually bring a renewed investigative spirit about me to find the cause of my symptoms and I usually change whatever I can in an attempt to force a change.

 

I think that's it for now! Feel free to fire any questions or clarifiers.

[JMac1234]

Update on this most recent wave of symptoms...

 

I had been feeling really great over the past month. So on May 23 I started running 2-3 times a week again. I also restarted caffeinated coffee, drinking one cup/day about 5x/week.

 

June 6-10 I was out of town on a work trip, so my eating definitely took a turn for the worst (burgers, etc). Then the week after I was the most stressed that I've been lately trying to catch up on stuff after having been away. I got 'caught up' on Wednesday (June 15) night, but then felt a wave of fatigue, brain fog, and depression starting on Thursday morning. Then on Saturday night (June 11) I had a hard time falling asleep for the first time in a while. Sunday I had a big presentation, so when a wave of my symptoms (described above) started up I hoped it was all just related to the presentation.

 

It's been 48 hours of the symptoms continuing, which I know in the grand scheme of things is still a pretty small wave. But as I reflect on this wave I'm thinking that I just pushed too hard over the past couple of weeks and that is what sparked this current experience. I went for a brisk walk after supper last night and when I returned the wave intensified. As I've read so many stories from other folks I'm beginning to think that I need to be more cautious about the stress I put my body through--especially if I want to exit the wave faster.

 

With that in mind, I'm curious if anyone that is reading this has ideas on what are the surprising stressors that you've discovered in your journey (and how you avoid them)? Because my symptoms feel like constant adrenaline I've often tried to exercise (running 5k, heavy gym lifting, or even just brisk walks) in the midst of waves to "burn off" the energy. I'm now thinking that the extra stress that exercise brings might make things worse. Maybe it's kinds of foods for you? I know I've tried a dozen different eating patterns trying to find healing.

 

But for now I'm including these things in the stress list:

- Caffeine

- Work related stress

- Bad eating

- Lack of sleep

- Lack of quiet downtime

 

Also going to wade through this post. Looks like it covers the exercise thing pretty extensively.

 

Of course this all sounds so simple now that I'm writing it, but I'm guessing that my body just doesn't have capacity to filter the stressors like it used to, so when I overload it I end up spinning back into a wave. I'm hoping that my capacity will grow again with time, not so that I can overload my body with stress but so that I can be more present for my wife and kids.

 

 

If it's helpful, I didn't leave much about 'me' in the first post. I live in the East Coast of Canada with my wife and three kids. The kids are all under the age of 8. My life is pretty great, outside of dealing with this nagging health issue. 

Edited June 21, 2022 by JMac1234
Found a post that talks about going slow on exercise

[JMac1234]

Update on the current wave.

 

Sunday it all started.

 

Monday I started taking emergency doses of Benadryl to calm down.

 

Tuesday it ramped up really intensely.

 

Wednesday morning it was getting so bad I started thinking about reinstatement.

 

Wednesday at 2:30pm it was like a switch flipped and the symptoms went from an 8/10 down to a manageable 4/10. Since then I haven't take any Benadryl. I am waking in the early morning with the classic cortisol spike (which had subsided for me for much of April and May). I still feel like I have adrenaline coursing through my body at all times but I can manage it with being *very* calm and slow. Yesterday (Thursday) I left the house for the first time this week to get groceries and when I came back I definitely felt like the increase in activity caused a rise in my symptoms. So I'm really trying to be extremely cautious and gentle on my nervous system to invite the stable calm I had been experiencing for the past couple months. Restarting all the breathing and meditation and taking frequent rests.

 

Does this sound like a familiar pattern to anyone? Anything else that I should be watching for?

[JMac1234]

Okay friends, now I'm interested in talking about reinstating. I've read this post, but let me talk you through what I'm wrestling with...

 

Over the past two years the adrenaline style symptoms have been the core issue. I've experienced a range of neuro-emotions, but I think I can attribute pretty much all of them to the side effects and withdrawal from the Paxil, Lexapro, and Lurasidone/Latuda. I'm more confident in that regard because my symptoms now are honestly almost entirely physical in nature.

 

But this wave is lasting longer that any wave since I stopped Seroquel/quetiapine. It is feeling more like the waves of symptoms that would lead to a new doctor/naturopath protocol over the past two years. The only drug that worked almost immediately at subsiding the symptoms was Seroquel/quetiapine, hence my question about reinstating. Since I was on 50mg XR, I know I'll need to dose twice a day with the reinstatement dose. But do you think it's worth it at this point? I've been off of it for 7 months, so when my symptoms are 5/10 in intensity or lower I'm not as interested in restarting. But they've been hitting 7/10 and 8/10 more regularly and that's a little too much.

 

To recap, my symptoms feel like the fight or flight response (pure adrenaline pumping through my body). Here are the physical sensations more accurately described..

Loss of appetite

Tightness in my stomach
Very fidgety
Hot flashes
Tightness in my chest
Low libido
Can’t rest -- Unable to nap

No sense of calm

Deep desire to take my mind off of what I'm feeling

Inability to focus on anything

Light tingling in my arms and hands

 

The crazy thing is that my heart rate really doesn't change during these episodes. Neither does my blood pressure. And although I haven't checked this time around, my blood sugar was unaffected during the last significant wave last August/September.

 

At first read these symptoms maybe don't sound debilitating. But when they are at their most intense I can't engage in conversations with my wife or kids. I can't really work. If they aren't their worst I can distract myself with menial tasks and TV shows, but they've been getting to the levels where that isn't even possible. I start pacing, walking the neighbourhood, praying for relief. It's back to destroying my sleep.

 

I've added magnesium back into my rotation. I've typically done 200mg before bed, but I've tried adding doses during the day as well. It seems to help a little bit at the higher dose (200mg of elemental magnesium), but then makes my heart feel weird for the day.

 

The other ideas rattling around my Google searches is if a different therapy might be helpful. The hard part is I don't really see a 'diagnosis' that would explain my symptoms. My blood tests keep coming back normal. But maybe something like clonidine would help? Or gabapentin?

 

Anyways, I'd love all your feedback. I'm just so frustrated to continue to deal with this. I'm also frustrated that it seems so physical in nature, but none of the tests show anything physically wrong.

[getofflex]

Hello, and welcome to SA.  We are a volunteer-run community of people who have been or are getting off of psychiatric drugs.  I believe that your symptoms are because your brain is trying to adjust to it's predrug state.  It takes a long time to recover from a cold turkey, and the various drug switches.  Most doctors will deny this, because they are brainwashed by drug manufacturers.  

 

Here is some important information about how these drugs actually work.  This explains why we get symptoms from going off of these medications, and why it's so important to taper slowly and carefully, and be very cautious about changing our doses: 

 

How Psychiatric Drugs Remodel Your Brain

 

 

This helps you understand what withdrawal syndrome is: 

 

Video on Recovery from Psych Drugs

 

Windows and Waves Pattern of Stabilization

 

 

Here is a link with checklists of common WD symptoms: 

 

Dr Joseph Glenmullen Withdrawal Symptom Checklists

 

 

Here are some techniques to cope with symptoms: 

 

Non Drug Ways to Cope with Withdrawal Symptoms

 

Stability is really important when we are tapering off psych meds.  Please read the link about stability:

 

Keep It Simple, Slow, and Stable

 

 

We don't suggest many supplements, but 2 that many of us find helpful are magnesium and omega-3 fish oil. Here are the links for info about those. It is suggested to add one at a time, and start with a low dose to see how it affects you. 

Magnesium

Omega 3 Fish Oil

 

This link talks about recovery from fast tapers and cold turkeys: 

 

Cold Turkey and Fast Taper

 

On 6/21/2022 at 7:13 AM, JMac1234 said:

I had been feeling really great over the past month. So on May 23 I started running 2-3 times a week again. I also restarted caffeinated coffee, drinking one cup/day about 5x/week.

 

June 6-10 I was out of town on a work trip, so my eating definitely took a turn for the worst (burgers, etc). Then the week after I was the most stressed that I've been lately trying to catch up on stuff after having been away. I got 'caught up' on Wednesday (June 15) night, but then felt a wave of fatigue, brain fog, and depression starting on Thursday morning. Then on Saturday night (June 11) I had a hard time falling asleep for the first time in a while. Sunday I had a big presentation, so when a wave of my symptoms (described above) started up I hoped it was all just related to the presentation.

It sounds like your nervous system got bombarded by several things that stressed it, and it put you into a wave.  It's good that you are aware of these things.  Intense exercise, such as running, can definitely play a part in this, because it causes your body to produce adrenaline, which activates your nervous system, causing those flight or fight symptoms your described.  

 

On 6/24/2022 at 5:10 AM, JMac1234 said:

So I'm really trying to be extremely cautious and gentle on my nervous system to invite the stable calm I had been experiencing for the past couple months. Restarting all the breathing and meditation and taking frequent rests.

This sounds like an excellent strategy.  Keep it up.  

 

Please avoid alcohol, and other mind altering substances, which will tend to further destabilize your nervous system, eat whole and healthy foods, avoid sugar and caffeine, do gentle walks outside each day if you are able.  The link above on non drug coping skills has a plethora of other techniques. 

 

I've given you quite a bit of information here.  Please read through it, and mull it over, and we will take it from there. In the meantime, take care of yourself, and take heart.  We in this forum have been through this, and we understand first hand the pain and discomfort you are going through.  Please know that the brain is amazing in it's healing abilities.  It takes time, but healing can and will happen. 

Edited June 25, 2022 by getofflex

[getofflex]

35 minutes ago, JMac1234 said:

Okay friends, now I'm interested in talking about reinstating.

If you do choose to reinstate, realize that it is a gamble, since you've been off the drugs for 7-8 months now.  I would start with an extremely small test dose, to see how you react first.  If you reinstate at too high a dose, you run the risk of kindling your nervous system, and going from the frying pan to the fire.  As I'm not familiar with Seroquel, I'll confer with the other moderators, and one of us will get back to you.  Please carefully read this link: 

 

About Reinstating and Stabilizing to Reduce Withdrawal Symptoms

[JMac1234]

Thanks, I really appreciate it. I've been through those links before but I'll take a fresh look at them now that I'm in this wave. I definitely let my guard down but it was a result of seeing such progress over the past four months. I did have tiny waves during that time, but they were easy to manage and helpful reminders to stay the course with the healthy choices. It's been almost a year since I had a wave last this long -- really discouraging.

[ChessieCat]

Q:  Is there anything that has changed that may have exacerbated the symptoms?

 

Things to consider:

 

alcohol, caffeinated beverages, sickness / injury, starting or stopping medication/supplements, vaccination, additional stress (job loss or change, financial issues, relationship issues, moving, holiday), loss of close relative / friend / pet, consuming new foods (MSG, which is a neurotoxin, artificial sweetners, new spices)

[Shep]

23 hours ago, JMac1234 said:

I've added magnesium back into my rotation. I've typically done 200mg before bed, but I've tried adding doses during the day as well. It seems to help a little bit at the higher dose (200mg of elemental magnesium), but then makes my heart feel weird for the day.

 

Please let us know more about this. In your signature, you state you're taking magnesium, L-Theanine, and Inositol before bed. Since you mention you "added magnesium back in," was the heart issue during the day something that went away when you had stopped taking magnesium? 

 

Please list the dates you've been on these symptoms, as best you can remember. 

 

Taking several sedating supplements at one time may be causing a paradoxical reaction - the more you dampen down the nervous system, the more it fights to stay alert. This is the paradoxical reaction. 

 

 

[JMac1234]

Thanks ChessieCat!

 

Shep -- thanks for jumping in here.

 

I'll start by saying the feedback yesterday was helpful and the day definitely got better. Obviously as the symptoms lessen in intensity I'm less concerned about reinstating. When they are pumping at their highest I start scrambling for solutions to lower the intensity.

 

The Magnesium is a blend of glycine, oxide, and bis-glycinate chelate with a dose of 200mg per pill. I picked up a liquid version of the same blend so that I can do lower doses. The inositol and l-theanine are present together in the pill I have. A naturopath suggested that combo and I started them 1 hour before bed in July 2021, but I stopped taking both of them on April 5, 2022 after having over a month of no symptoms.

 

The heart issue happened when I started taking the full 200mg magnesium during the day (as well as at night). Here are my daytime doses...

 

June 22 - 8am Mag 200mg

June 23 - 7:30am Mag 200mg

June 24 - 12:45pm Mag 50mg / 2:00pm Mag 200mg

June 25 - 7am Mag 50mg / 12pm Mag 50mg / 6pm Mag 50mg

June 26 - 5:30am Mag 50mg / 9am Mag 25mg

 

So for about 4-6 hours after taking the 200mg doses here I'd feel simultaneously calmer but also like I had just run a 5k and had stopped running and sat down (like I was stressing my heart).

 

Yesterday didn't have the same heart effect but seemed to have nearly the same calming effect, so I'm trying to drop that dosage down. Each of these nights I have continued to take the full 200mg pill at night, but I wonder if it's worth lowering that too with the liquid solution.

[Shep]

21 hours ago, JMac1234 said:

The Magnesium is a blend of glycine, oxide, and bis-glycinate chelate with a dose of 200mg per pill. I picked up a liquid version of the same blend so that I can do lower doses. The inositol and l-theanine are present together in the pill I have. A naturopath suggested that combo and I started them 1 hour before bed in July 2021, but I stopped taking both of them on April 5, 2022 after having over a month of no symptoms.

 

 

Thanks for the full explanation of what you're taking. We generally advise not using combo supplements - if you have a reaction, you won't know which supplement caused it. While we don't know as much about supplements as we do psychiatric drugs, if you've been taken a supplement for a long time, it may be best to taper it, although you may be able to taper faster than the 10% harm-reduction rule for psychiatric drugs. Tapering allows the body to adjust to the decrease. It's possible that a supplement may be masking a symptom and once the supplement is removed, the symptom returns. By slowly reducing, if you feel an uptick in symptoms, you can increase the supplement dose without as much risk of kindling the nervous system (nervous system kindling is trauma to the nervous system caused by abrupt changes).

 

Just some thoughts as you travel through withdrawal and may periodically add or subtract a supplement. 

 

22 hours ago, JMac1234 said:

So for about 4-6 hours after taking the 200mg doses here I'd feel simultaneously calmer but also like I had just run a 5k and had stopped running and sat down (like I was stressing my heart).

 

This sounds like a paradoxical reaction. 

 

22 hours ago, JMac1234 said:

Yesterday didn't have the same heart effect but seemed to have nearly the same calming effect, so I'm trying to drop that dosage down. Each of these nights I have continued to take the full 200mg pill at night, but I wonder if it's worth lowering that too with the liquid solution.

 

If you're taking the magnesium at the same time as the other supplements, you may want to try separating them out by at least 2 hours. That way you can see if it's the magnesium by itself or if it's the combination creating the paradoxical reaction. 

[Altostrata]

Hello, @JMac1234, how are you doing?