Sundaze: My experience being on luvox since 2018 (and antidepressants since 2014)

[Sundaze]

Hello everyone. I may be new to the site but I've been reading through the threads for many months now and I finally decided to make an account. My hope is that one day I'll be able to make one of my own success story threads! Though it may be awhile before that happens... So heres my story so far...

I started taking antidepressants as a teenager when I was diagnosed with anxiety, depression, and OCD. This was around 2014 and I don't remember the details but I switched between sertraline and abilify. Later in college in 2018 I switched to fluvoxamine (aka luvox) at the recommendation of a psychiatrst since I felt the other meds hadn't worked as well as I wanted them to. The luvox worked but over time I noticed I felt more "empty" or blank. And I was still anxious and depressed in the background too but my OCD obsessions seemed to have been put on the backburner which was nice but in exchange I only ever felt either blank or sad. Throughout college I described this to the psychiatrist and how it felt like I was plateuing and they responded by increasing the dosage of fluvox. So then I started feeling less anxious and depressed but still blank. Does taking away bad feelings but not increasing good feelings count as the medication "working"? By the end of college I was sitting at 200mg of the luvox.

Fast forward to 2022 where I had graduated still in the blank feeling I had a big personal crisis that of course resulted in my (new) psychiatrist (actually a CNP) increasing my dose EVEN MORE to 250mg. The personal crisis was the tipping point for me to actually be honest about my issues and tell my (new) therapist. I felt like I'd been holding back in previous therapy sessions (I've seen at least 5 since high school) but I told this new one things I had never told anyone before for fear of ridicule. Long story short, me being honest helped me come to the point in 2024 where I felt stable enough emotionally and had a good enough path forward that I wanted to stop taking the luvox. When I told the CNP who prescribed the meds to me about this they suggested I do a decrease like 250 > 200 > 150 > 100 > 50 > 25 > 0 and decrease every month or so. And they specifically said with previous patients that the move from 25 to 0 was the hardest. After reading the threads on this site...it's no wonder! Fortunately I discovered this site while looking for how fast I should decrease my dose and learned about the 10% decrease rule but that wasn't until after I "jumped the gun" when I first started to taper.

I did go from the CNP's recommended 250mg to 200mg because I was taking two 100mg capsules and one 50mg capsule, both extended release, and I didn't have a way to just decrease by 25mg which would be the accepted 10% thats discussed here on the site so it ended up being a 20% decrease instead. Things went ok symptom wise. I had some GI issues especially after eating but otherwise I felt ok to decrease the next month. Then I decreased from 200mg to 175mg which is 12.5% instead of 10% but I felt it was close enough and I felt fine during the first decrease so I felt confident. I also switched to instant release tablets instead of the extended release capsules around here so I could cut them into smaller doses. After another month of irritating but tolerable symptoms, I tried getting as close to a 10% decrease as possible by cutting 25mg tablets into fourths so I went from 175mg to 156.25mg. After this point I had extreme bouts of anxiety and depression and suicidal thoughts that caused me so much stress it interfered with my monthly cycle so I decided I would go back to the 175mg and wait til I stabilized. As of June 2024, I'm still at 175mg as I write this.

I'm not exactly "stable" yet because of a few hiccups that happened since June. I had been taking 75mg in the morning at 100mg at night but one day in July I accidentally switched them and took 100mg in the morning and 75mg at night. When I noticed this I thought "well it's ok, I'll just take it like this from now on because I don't want to flip flop". Bad idea! I was starting to stablize after reinstating up to 175 in June but after this happened all my previous withdrawal symptoms came back with a vengeance! There were even some new ones too like temperature regulation problems and short term memory problems which I never had before. But ok that's well and good, I'll just have to buckle down and wait til I stabilize again. Nope! In September one day I realized that I forgot to take last night's dose and so I thought "well it's ok, I'll just take that dose together with this morning's dose." REALLY bad idea! Only a few hours after this I felt the worst brain fog I had ever felt. Waterlogged is the best way I could desribe it. I couldn't think straight, it was like I was in a trance. My eyes felt like they were "lagging", like I glanced at something but it took my brain a few seconds to process what I was looking at. My period was late by two weeks and before that point I had been completely regular besides when I went from 175mg to 156.25mg.

Finally the fog "cleared" slowly by the beginning of October. I think that may have been the first real "wave" I felt or at least the hardest. Since then my symptoms have been going up and down and some come and go and some are new. The most consistent symptom I've had is GI problems like bloating and nausea. The newest symptoms I've had is neuropathy and tingling/pain in my extremities but mostly in my dominant hand which worries me as it came out of the blue one day in October and is still present (coming and going but noticeble). So now I'm here in December. I'm mostly stable but I don't know if I'm stable enough to attempt another decrease. I'm probably going to hold until January at least.

 

Thank you for reading! Please root for me, I'll be rooting for you!

Edited December 11, 2024 by Emonda
Name to title

[Jane318]

Greetings @Sundaze and welcome to SA.  We are a community of volunteers providing peer support in the tapering of psychiatric medications and their associated withdrawal syndromes. 

 

Thank you for completing your signature.  I would ask that you please include the name of your AD (fluvoxamine) in your signature; a summary of your AD use prior to 2024, i.e., a snapshot of what you describe in your narrative; and any other OTC or prescription drugs and supplements you take on a regular basis.  This is important information and putting it in your signature helps the moderators and others who will respond to your posts.

 

Thank you too for sharing your story. I am so sorry for all you have suffered, and I commend you for the hard work you have done to work through your problems and your commitment to getting off ADs.  

 

You have obviously done your research here; it is appreciated.  I suspect that the "crash" you experienced in mid-May was in part due to too-fast / too-large prior cuts as well as the cut from 175 to 156.25.  I experienced something similar and learned that symptoms can pile up in the background when you go too fast.  Further, you made a change in the type - from XR to IR - a change like this can trigger symptoms as well.  You were wise to updose back to 175 mg.  That you experienced severe reactions to the two dose mishaps shows how powerful these drugs are.  And the reactions were perhaps extreme because your CNS was already hyper-sensitized.

 

On 12/10/2024 at 6:18 PM, Sundaze said:

So now I'm here in December. I'm mostly stable but I don't know if I'm stable enough to attempt another decrease. I'm probably going to hold until January at least.

If you are not sure you are stable enough to resume tapering, it is wise to continue to hold.  I am in month five holding after an updose in July.  I'm just now starting to feel somewhat stable but have also decided to wait another month to be sure.

 

Withdrawal - You may want to read:

About Reinstating and Stabilizing to Reduce Withdrawal Symptoms

How long does it take to stabilize after reinstating or updosing?

Hypersensitivity and kindling

 

Recovery - As you recover during this holding period and later when you re-start your taper, it is very normal to have periods where you feel better, and periods where you feel terrible.  This is what we call the windows and waves pattern of stabilization.  This is actually a good sign of healing!  Read more about windows and waves here:   The Windows and Waves Pattern of Stabilization

 

Preparing to resume your taper - As you know, SA recommends the hyperbolic taper method, which you can read about here:  Why taper by 10% of my dosage?  The 10% is based on the prior dose, so the reductions will get smaller and smaller each month, for example: 10mg, 9mg, 8.1mg, 7.3mg etc. If you develop unpleasant side effects from tapering, halt the taper, give yourself time to settle, and once stable, taper more slowly and by smaller amounts moving forward. The experience of others suggests that the lower you go in dose, the slower you need to go with tapering.  Accuracy is very important in dosing.  At lower doses, pill-cutting is not accurate enough - the links below give information on getting liquid formulations from a compounding pharmacy and/or how to make your own.

 

Please read:

 

Important topics in the Tapering forum and FAQ

Tips for tapering off Luvox (fluvoxamine)

 

Tracking your Symptoms - This Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) is a helpful summary of what many experience.  I encourage you to track your symptoms each day using this checklist or similar tool.  It will help you spot those windows and waves and inform your decisions about when and how much to cut as you go along.

 

Coping with Symptoms - We have many threads on strategies for coping with withdrawal symptoms.  I encourage you to explore the links on the home page.

 

Support your Healing - There are a few things you can do to help your nervous system heal.   Eat a balanced, whole foods diet, stay well hydrated, engage in gentle exercise, and get adequate rest/sleep.  Avoid all neurologically active substances, like caffeine, alcohol, nicotine and recreational drugs- these are like pouring gasoline on a fire for your symptoms.  Avoid adding any further psychiatric medications to deal with your withdrawal from psych meds- the effects of these meds on a destabilized nervous system is unpredictable, and taking something else could make you worse.  We do encourage people who are tapering to avoid caffeine, alcohol, and recreational drugs.  Many prescription and OTC drugs can cause problems too and should be avoided as much as possible. 

 

 

Supplements - We recommend only two supplements here - magnesium (glycinate is a good form) and omega 3 (fish oil). Many people find these to be calming to the nervous system.

Magnesium, nature's calcium channel blocker 

Omega-3 fatty acids (fish oil) 

If you decide to try a supplement, even those we recommend here, add in one at a time and at a low dose in case you do experience problems.  If you tolerate it well, you can increase the dosage slowly over time.  

 

This is your introduction topic.  Each member gets one intro topic- please post updates and questions here, in this thread.

 

Again, welcome to SA.   I look forward to following your journey, and helping out in any way I can.

[Sundaze]

Hello Jane, thank you for the welcome! Yes it does feel as if my nervous system is extra sensitive both physically and emotionally but like you said it comes in waves. Some days I'll feel mostly ok but then one small incident happens and suddenly I feel high strung. A question about this, I understand that as time goes on my nervous system will heal slowly but every time I decrease my does is it like another "hit" to my nervous system? Will there ever be a point where I can say my nervous system is 100percent back to normal? (Whatever normal means now.)

And a small update on my current state, the neuropathy in my hands and feet are slowly but surely fading and now the biggest symptom I'm facing is the inability to sleep the whole night. I've been waking up either once or twice per night for the past month which is really annoying and I'm concerned it's affecting the amount of good sleep I'm getting. Luckily I can fall right back asleep after waking up but I just wish I could go one night uninterrupted.

 

[Jane318]

22 hours ago, Sundaze said:

I understand that as time goes on my nervous system will heal slowly but every time I decrease my does is it like another "hit" to my nervous system?

Well... yes.  This is because the drugs affect our brain chemistry in a way that depends on the dose.  Which is why it is so important to go slowly, to keep those symptoms under control.  In fact, the lower the dose, the more important it is to go slow, because it is at the lower doses that the brain is impacted the most.  Here's an explanation:  Why taper? SERT transporter occupancy studies show importance of gradual change in plasma concentration. 

 

23 hours ago, Sundaze said:

Will there ever be a point where I can say my nervous system is 100percent back to normal? (Whatever normal means now.)

Many people here will attest that yes, 100% recovery is possible in time.  I encourage you to read some of our Success Stories!

 

23 hours ago, Sundaze said:

And a small update on my current state, the neuropathy in my hands and feet are slowly but surely fading

Great news!  This shows you are healing!

 

23 hours ago, Sundaze said:

the biggest symptom I'm facing is the inability to sleep the whole night. I've been waking up either once or twice per night for the past month which is really annoying and I'm concerned it's affecting the amount of good sleep I'm getting. Luckily I can fall right back asleep after waking up but I just wish I could go one night uninterrupted.

Sleep issues are common in withdrawal.  This too will improve with time.  You might be interested to read:

What is the sleep cycle?

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

Path to Better Sleep FREE online for everyone from the US Veterans Administration

Music for self-care: Calms hyperalertness, anxiety, aids relaxation and sleep

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

[Sundaze]

Hello and Happy New Year! I mentioned I was planning on holding my current 175mg dose until at least January and so since it's January and I'm feeling stable now I'm planning to decrease some time this month. Right now I want to try doing two small separate decreases so as to lessen any possible withdrawal symptoms. I only have 50mg and 25mg tablets and my plan is to cut one 25mg in half and then cut one of those halves in half again so I can decrease in 6.25mg increments as such:
175mg --> 168.75mg and hold for two weeks --> 162.5mg and hold for at least a month
This tecnically adds up to a 12.5mg, or about 7%, decrease. I would do a 10%decrease but that would mean I'd have to decrease to 157.5mg and right now I don't have a means to do that cleanly. 

Another small update, I have started taking a vitamin D supplement as of late December because I happen to live in an area that gets very gloomy this time of year...lol. I've taken vitamin D in the past for this same reason and haven't encountered any adverse reactions but I am still keeping an eye out for anything unusual. I'm just taking one 1000IU capsule every other day for now.

[Jane318]

@Sundaze Thank you for the update.  Good to hear you feel stable and are ready to start tapering.  Your initial tapering plan sounds like a good one to test the waters.  The SA guidelines are 10% per month - yours is a bit faster than that, as you will be at 14% at week 4.  However, you are at a high dosage where brain chemistry changes are slower so this may be okay to start.  You will want to keep careful taps on your symptoms though, especially as your system is sensitized from previous fast taper, and be prepared to hold longer as needed to keep your withdrawal in check.  As you get lower in dose, you will likely need to start cutting by smaller amounts, which means that eventually you will need to look at using liquid solutions and/or weighing the pills for accurate dosing.  

 

Can you please add your Vitamin D - and any other supplements / drugs you take on a regular basis - to your signature?  Also, it would be very helpful if you could repeat your drug name in the "Now" line, indicate it is IR, and add the info that you are taking it twice per day.  We suggest even doses, 12 hours apart, or as close to that as possible.

 

Thanks again for the update, keep us posted and Happy New Year to you as well!

[Sundaze]

Hello again Jane. Forgive my ignorance but where did the 14% number you mention come from? If I go from 175 to 168.75 that should be a 3.6% decrease (rounded) and then from 168.75 to 162.5 would be another 3.7% which combined would be 7.3% Am I doing the math wrong? If so I wouldn't put it past me lol...

[Jane318]

On 1/3/2025 at 5:08 PM, Sundaze said:

Hello again Jane. Forgive my ignorance but where did the 14% number you mention come from? If I go from 175 to 168.75 that should be a 3.6% decrease (rounded) and then from 168.75 to 162.5 would be another 3.7% which combined would be 7.3% Am I doing the math wrong? If so I wouldn't put it past me lol...

I am so sorry!  It was me that did the math incorrectly.  You are right.  So that would be 7.3% over six weeks - that's better!  Apologies again for the confusion.

[Sundaze]

Another update from me!
Tomorrow I'll start my decrease from 175mg to 168.75mg, so subtracting roughly 1/4 of a 25mg tablet. I have a cheap pill cutter I got from my local drug store but it is indeed cheap and doesn't cut very evenly. I measured the next few days' doses out using the pill cutter and a digital scale but using the cutter is so tedious. I'm aware that some others on the site have used a pill crusher instead and had an easier time? Does anyone know if luvox tablets are ok to crush? because I know some medication loses its efficacy if it's crushed. I don't see anything doing a quick Google search but I want to make sure.
 

[Jane318]

Yes crushing tablets is okay.  This is not possible with extended-release capsules, which contain coated beads.

 

Best wishes, and keep us posted please, as you go - this helps others in the community, too!