seacat: discontinuing from Pristiq and my med journey

[seacat]

Hello everyone. I found this site last night after dealing with dizziness from discontinuation syndrome all day. I'm thankful to have found this resource and community.

 

I have my info in my signature but I'll expand. I'm a mid-20s woman from Australia and currently studying at uni. I've been dealing with moderate-severe social anxiety for literally as long as I can remember (4y/o) and I noticed depressive symptoms when I was about 13. I saw counsellors all throughout school and even into uni which didn't really help.

 

In June 2019 I saw a doctor about my mental health with the support of my then-partner. I was put on Fluoxetine 20mg to start with and I was happy to take it. Anything to help with my mental health which was debilitating at that point. I'd heard of people basically having their lives changed because of how much their meds helped them. I had the usual 2 weeks of adjustment symptoms - sleep issues, nausea, sweating, increased anxiety. After that, I was left with sexual dysfunction and sleep disturbances (waking up every few hours). Otherwise, I didn't notice any improvement in my mental health symptoms. I went back to the dr and she told me to take two 20mg a day and see how I felt. I did that for almost 2 weeks and didn't feel a difference. So I stopped cold turkey. I figured I needed a different med. The dr didn't mention anything about tapering or discontinuation syndrome and I don't recall feeling any side effects from it. Didn't even know it was a thing until recently. I probably didn't notice anything because of Fluoxetine's long half-life.

 

In Jan 2020, I went back to the dr to get a blood test and try another med. I was started on Duloxetine 30mg for a month. For the first two weeks I had the regular symptoms of adjusting to meds except I was sleepy basically all the time. So sleepy that I couldn't stay awake for more than 4 hours at a time without an hour or two nap. It was actually kind of nice since I always had issues falling asleep but I was lucky I tried it during uni break/ when I was home, otherwise that wouldn't have gone well. This med did nothing too. I was beginning to feel disillusioned. I wonder if I even had mental health issues if they weren't responding to meds. It's very obvious that I do, the meds just didn't work. The dr said it might be a good idea to see a psychiatrist since we'd tried a SSRI and SNRI and neither had worked. Again, I wasn't told about tapering or discontinuation syndrome.

 

A day or so after stopping the med, I was hit with severe dizziness. I couldn't sit upright without feeling like the world was spinning. Lying down helped but didn't stop the dizziness completely. Heck, even scrolling on my phone made the dizziness worse. It was truly awful and absolutely debilitating. I didn't know what it was at the time. I thought it might've been severe anemia or something but my blood test showed I was a little on the low side, nothing severe. Thought it might've been an inner ear issue or something. Either way, it was the worst I'd felt and it lasted two weeks before it started to disappear. I made a note on my phone about how if this was what my life would be like from then on, it 100% wasn't worth it and euthanasia should definitely be thing for people who suffer like that. Anyway.

 

In late March 2022, I decided to see a different dr and give meds another shot. I was still hopeful. I was prescribed 50mg Desvenlafaxine extended release, and given a referral to a psychiatrist. I didn't really have the usual adjustment issues. Maybe a little nausea but otherwise it was smooth. Again, I didn't feel any different.

 

I went off them a few days ago. I hadn't yet linked dizziness with discontinuing so when I felt dizzy out of nowhere on Thursday the 21st, it was really odd. I thought maybe anemia again. I also had digestive issues but they weren't so bad that I thought something was up. I had one tablet left so I took it around 5pm and I felt better that evening. That's when I had the suspicion that I was going through withdrawal. That suspicion was made certain when yesterday, Saturday the 23rd, I was extremely dizzy. It reminded me of that 2 week period in 2020. And then everything clicked.

 

I started reading about discontinuation syndrome. About half-lives, how tapering was done. How fluoxetine is sometimes given to ease the DS because people have fewer issues getting off it. I still had some fluoxetine left. I figured it couldn't hurt to take one. Then I came upon this site and read about how hard it is to come off Pristiq. How people were tapering to really low doses over months. I don't know how I wasn't told this.

 

Up until a few days ago even, I wanted to get on benzos or something despite being very aware of addiction issues and how bad withdrawal can be. I was willing to take basically anything to help deal with my issues. I can't function with my level of social anxiety and depressive episodes. Now that I know about discontinuation syndrome, I don't want to try another med. I had a referral to a psychiatrist but now I don't want to see them.

 

I read here that once DS symptoms start, it's kinda pointless to be on fluoxetine. I guess I'll just have to ride this out. I wish I'd taken better notes last time. I just know it'll take about two weeks. Maybe one week will be enough to see some symptom relief. The main issue is that I have two exams this coming week that require me to use public transport to travel in person. That's not going to be fun at all. Don't know how I'll survive.

 

Tuesday, 19th - 50mg pristiq taken late at night

Wednesday, 20th - no meds, felt fine  

Thursday, 21st - felt dizzy + digestive issues (gas + loose stool), took 50mg pristiq at about 4pm

Friday, 22nd - no meds, no dizziness but had digestive issues in the evening

Saturday, 23rd - very dizzy + digestive issues, took 2 panadol optizorb at 4pm, another 2 at 8:30pm. They didn't help. One 20mg fluoxetine at 10:30pm. Slept at 4:30am.

Sunday, 24th - woke up several times through the night but final wake up was 11am. Didn't feel as dizzy but felt weird. Kinda like I'd overslept, a little dizzy/ disoriented. Dizziness came back after an hour or so of moving around. Digestive issues present.

[getofflex]

Hello, and welcome to SA.  We are a volunteer-run community of people who have been or are getting off of psychiatric drugs.  It sounds to me as if your nervous system has become destabilized by going on and off of several psychiatric drugs abruptly.  The more we go on and off psych meds, the more sensitized our nervous systems become, and the more withdrawal symptoms we get.  After only 1 month, your nervous system becomes dependent on the drug, and when you jump off the drug abruptly, it can send your nervous system into a tailspin.  

 

Are you currently on any drugs?  If so, please add this to your signature.  

 

 

On 4/24/2022 at 12:09 AM, seacat said:

I still had some fluoxetine left. I figured it couldn't hurt to take one.

 

On 4/24/2022 at 12:09 AM, seacat said:

I had one tablet left so I took it around 5pm and I felt better that evening.

 

Please don't take these medications like this.  They are not like an ibuprofen, where you can just take one as needed to cure pain, and once you stop taking it, they are out of your system. These drugs actually change you nervous system architecture, and to use them like this is very confusing and destabilizing to the nervous system.  As we get off the drugs, our brain has to then undo all the changes that the drugs made to our system, and rewire itself to it's prodrug state.   When we are on the drugs, we need to take the same dose each and every day at the same time.  When we are tapering, we need to do so very very gradually.  No skipping doses or taking them ad hoc.  

 

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

 

Considerating About Stability - Stop Jumping Around

 

 

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

 

If it were me, I would stay altogether off these psych meds, and allow my nervous system to heal itself.  Jumping back on them is likely to worsen your situation.  In time, your nervous system will sort itself out, and will gradually adjust to being off the drugs.  It doesn't sound like any of them worked for you.  The more we go on and off these drugs, the more likely we are to have trouble with symptoms of nervous system destabilization.  If it were me, I would be extremely cautious about going on these drugs in the future.  Please keep us posted. 

 

Edited April 26, 2022 by getofflex

[seacat]

Thanks, I've read those links and I'm aware of what I've done now and what's happening to me. If I had known about DS earlier, I would've asked for a refill/ started the meds later when I had better access to my dr. Now I'm biding my time until I see her because I can't see her for a while. Kinda crazy how drs prescribe meds that literally change your brain like it's no big deal. When I talked to my previous dr about my sleep issues, she asked if I wanted melatonin or benzos. That's... too easy. Shouldn't be that easy for me to get them. Part of me wanted the benzos but I'm glad I went with the melatonin, even though it didn't work. I'm definitely not looking to get on any more meds. I already knew that most of my issues required working with a therapist but thought maybe a chemical imbalance played a part. And meds do work really well for some people. Now I know better.

 

Monday, 25/april: Still dizzy. According to the Scale for Vestibular Vertigo Severity Level and Clinical Response Evaluation (SVVSLCRE) I'd say I'm at an 8. Had moments of being more dizzy than others. No digestive issues. Some nausea. Took Prozac 20mg at 9pm. Felt kind of less dizzy around 1am.

 

Tuesday, 26/april: Woke up and immediately noticed I didn't feel as dizzy as the day before but it wasn't all gone. I'm probably at a 6. It's still pretty bad but at least for the most part, I can walk and do some basic things. I think the fluoxetine is working. I don't believe I could be completely over DS that quickly. Even though it can take a while for antidepressants to take effect and the body to adjust, I assume the Prozac helped there not be such a drastic change from 100 to 0. But I don't know, just speculating. Could also be that my DS symptoms are gone within a week but it seems very unlikely given my previous experience with it.

 

By the end of the day it's at a 4 on the scale. Not great but so much better than previous days. I can do most everyday things even if it's very uncomfortable and takes longer. I'm not sure why I'm a little less dizzy at the end of the day. Maybe it's because my brain gets accustomed to it throughout the day and learns to ignore it a bit? No other symptoms. I could actually study today. Thursday's the exam day, let's see what tomorrow will bring.

 

Wednesday, 27/april: Another day of improvement. I'd say I was at a 3. 2, maybe at times. Having a wobbly swivel chair really doesn't help, especially when you're fidgety. Peppermint/ menthol candy kind of helps. It's refreshing and distracts/ occupies your senses a little so you're paying less attention to the dizziness. A menthol rub/ ointment may also help. Chili/ spicy food may also help distract but I'd be careful and would definitely not rec if you're dealing with GI distress. Keeping my head still helped a tremendously, or at least moving slowly. Massaging my temples helped at times. Not just directly at the temples but the area around it too, as well as general gentle shoulder + neck massage. Too much pressure can cause dizziness. We don't have Dramamine for nausea here in Aus. We actually have very few meds for nausea/ dizziness. I'm not sure how helpful it'd be but I've read some things about people finding relief from it.

Exam day tomorrow. If my dizziness comes back I'll just have to wait it out until I see my dr next Thurs. Maybe, hopefully, it'll be over by then since it took about 2 weeks last time

Edited April 27, 2022 by seacat
Link broke, added pic instead. Also added some other possible ways to find relief

[ChessieCat]

10 minutes ago, seacat said:

If I had known about DS earlier, I would've asked for a refill/ started the meds later when I had better access to my dr. Now I'm biding my time until I see her because I can't see her for a while

 

Are you getting your prescription from a psychiatrist? and that is why you have to wait to see them?

 

Any doctor can prescribe Pristiq, it doesn't have to be a psychiatrist.  If you want to get it through them (if they are a psychiatrist) then I suggest that you phone the surgery and explain the situation.  If you are a regular patient of this psychiatrist then they should be able to organise a prescription for you without seeing you.  If not, contact your regular general practitioner or go to a medical centre.  I am also in Sydney and there are a lot of medical centres and you should be able to easily get an appointment somewhere.

[getofflex]

13 hours ago, seacat said:

I'm definitely not looking to get on any more meds. I already knew that most of my issues required working with a therapist but thought maybe a chemical imbalance played a part. And meds do work really well for some people. Now I know better.

I'm really glad to hear this.  I feel the very same way.  Here is some more info for your perusal.  This idea of a chemical imbalance has never ever been proven, and there is no scientific evidence to show that this is so.  

 

Robert Whitaker, author Anatomy of an Epidemic video

 

Chemical Imbalance is a Myth

 

13 hours ago, seacat said:

Took Prozac 20mg at 9pm.

Are you taking prozac daily, or was this just a once off?   From your signature, I thought you were off the drugs.    It looks like you took prozac on the 23 and the 25th.  And you don't say you took it on the 26th and 27th.  Is this correct?  Please update your drug signature if you are still taking the prozac. 

 

Are you still taking Pristiq?  Do you take it each day, or just on an ad hoc basis? 

 

 

Edited April 27, 2022 by getofflex

[seacat]

On 4/27/2022 at 7:14 PM, ChessieCat said:

 

Are you getting your prescription from a psychiatrist? and that is why you have to wait to see them?

 

Any doctor can prescribe Pristiq, it doesn't have to be a psychiatrist.  If you want to get it through them (if they are a psychiatrist) then I suggest that you phone the surgery and explain the situation.  If you are a regular patient of this psychiatrist then they should be able to organise a prescription for you without seeing you.  If not, contact your regular general practitioner or go to a medical centre.  I am also in Sydney and there are a lot of medical centres and you should be able to easily get an appointment somewhere.

 

No, it's just a gp. The situation's kinda complicated but I can only leave the house once a week to go to uni. So I skip classes or manage to squeeze an appt in before/after class without my family knowing. Tbh I'm not in a hurry since I'm feeling pretty well and there's nothing they can do for me now unless I experience an increase in symptoms. Even then I'm not sure what they'd do, maybe try to reinstate but it's a little late.

 

15 hours ago, getofflex said:

I'm really glad to hear this.  I feel the very same way.  Here is some more info for your perusal.  This idea of a chemical imbalance has never ever been proven, and there is no scientific evidence to show that this is so.  

 

Robert Whitaker, author Anatomy of an Epidemic video

 

Chemical Imbalance is a Myth

 

Are you taking prozac daily, or was this just a once off?   From your signature, I thought you were off the drugs.    It looks like you took prozac on the 23 and the 25th.  And you don't say you took it on the 26th and 27th.  Is this correct?  Please update your drug signature if you are still taking the prozac. 

 

Are you still taking Pristiq?  Do you take it each day, or just on an ad hoc basis? 

 

 

 

Thanks for the further info, going to look into Robert Whitaker's work.

 

Yes, I did take Prozac on those days but I'm off everything. I'm not taking Pristiq anymore. The last time I took it was when I said I had one left, before I started the Prozac.

[seacat]

Thursday, 28th/april: I think I'm at a solid 2. Maybe even a 1 at times. It's a bit hard to tell since there was a lot of moving around today + very sleep deprived. Feeling better means my fidgeting has come back which is not great for dizziness (especially with leg shaking). Some moments were more difficult than others. Overall I'm functioning fairly well which is nice. Fingers crossed it only gets better from here on out

[getofflex]

On 4/28/2022 at 9:11 AM, seacat said:

Thursday, 28th/april: I think I'm at a solid 2. Maybe even a 1 at times.

I'm glad to hear this.  Its sounds like you've had significant improvement. I'm hoping you are planning to stay off the psych meds, since none of them helped, and they caused you these problems.  Here are some links for you to read about psych meds and about our brains: 

 

Robert Whitaker, author Anatomy of an Epidemic video

 

Chemical Imbalance is a Myth

 

Neuroplasticity 

 

Norman Doidge - The Dark Side of Neuroplasticity 

[seacat]

Yeah I'm planning on staying off the meds. You're right, they haven't helped and have just caused issues. This may be my final update. My symptoms have essentially disappeared, thankfully.

 

Stumbled upon this documentary/ film, Coming Off Psych Drugs: A Meeting of the Minds (on coming off psychiatric medication)
It follows a group of people 23 people for three days, most of which were either off or coming off drugs, to talk about their experiences and things that have helped them. It was led by Will Hall and Oryx Cohen and think it's described as a sort of training/ summit. It's directed by Daniel Mackler, a former psychologist who's not a fan of meds and believes that if a therapist is suggesting meds, they're saying they don't have the ability to help their client.