FosterTheCritters: 19 years of antidepressants, tried various ways to get off and I'm a mess

October 5, 2021

Original topic title before reducing the length:

FosterTheCritters: after 19 years on antidepressants, I discontinued, reinstated, tapered up and down, and discontinued again, and I'm a mess. Looking for helpful advice.

_______________________________

Hi. I'm so grateful to have found this amazing group; it has given me hope which I badly needed. I have a very complex situation and don't know, even after reading a lot on this site, what my next move should be to help myself.

Here is my story.

In fall 2004 I started on 20mg of citalopram for GAD and panic disorder. I had typical side effects for a week or so and charge through because the improvement of my symptoms was fast and drastic. I increased to 40mg after one or two weeks with no trouble and I felt amazing. My anxiety was so diminished and my life got some much easier.

Fast-forward to 2015. I had many stressful years leading up to 2015 and 2015 was particularly bad. I thought maybe I could use something different to help with my increased anxiety and situational depression, so I switched to 60mg duloxetine. The psychiatrist had me switch with no taper at all and fortunately the switch went smoothly. I didn't notice any change on the duloxetine, but my husband was also on it, so it seemed convenient to stay on it.

After a few years I started to feel apathetic and lost motivation for doing a lot of things I enjoyed. I wasn't really depressed and my anxiety was managed fine, so I hit the pause button on switching meds even though I figured the medication might be causing the apathy.

In May 2021 my husband was diagnosed with salivary gland cancer (he's cured now via surgery). Even on meds, I'm terrible with uncertainty, and I had a really rough patch of anxiety as there was a lot of waiting involved in diagnosing and staging and my brain got away from me. Sometime in early June my duloxetine refills ran out; I needed to reach out to my doctor to submit a new prescription and I forgot. I take so many supplements and medications each day, and fill containers weekly; combine that with my worry about my husband and I didn't even notice that I wasn't putting duloxetine in the tubs. So, I stopped the duloxetine cold turkey and I don't really know when. I do know that at the end of June I recognized that I was having abnormally bad anxiety and panic along with some eye movement abnormalities and realized my mistake. I wish I could go back to just those withdrawal symptoms as that was easy mode compared to my life since then!

I contacted my psychiatrist to correct the issue and he prescribed 30mg duloxetine, which I started on July 2nd, 2021. I used to take my duloxetine at night and did that again; I didn't sleep at all the first night and the very first day after restarting I had terrible eye pain, neck pain, stomach cramps, diarrhea, felt like I was on stimulants 24/7, and severe facial and neck flushing in addition to emotional fluctuation and intense anxiety. Since I had never tapered up on Cymbalta before, and didn't know my reaction to that process, I assumed all the symptoms I was having were that, and stuck with it a week. My symptoms did not improve at all throughout that week even as I switched to taking it in the morning instead of at night.

My psychiatrist told me that I must be in withdrawal and prescribed going up to 60mg duloxetine after that first week at 30mg. I had the same symptoms but more intense even after some time at 60mg. I continued at 60mg at least a week, but things were so bad I asked my psychiatrist for a change. He prescribed 10mg citalopram. I stopped having the stimulated feeling I was having on the duloxetine, but all my other symptoms persisted.

My psychiatrist was still convinced that a higher dose was going to ease what he was still sure were withdrawal symptoms so on August 27th, 2021 he had me to go to 20mg after two weeks on 10mg. Again my symptoms seemed to worsen, so I dropped back to 10mg after about 2 weeks on 20mg. I'm not sure if my symptoms were improved after dropping back to 10mg because they were still very bad.

When I saw the psychiatrist again, he told me that the physical symptoms I was having were clearly not related to the medication both because they weren't improving on the meds, and he'd never heard of anyone having eye pain or flushing due to antidepressants. So, I decided not to see him again and went to get my eyes checked by an ophthalmologist. She couldn't find anything, so assumed eye inflammation and prescribed steroid drops that didn't help. I also asked my excellent primary care doctor to take over managing my antidepressant journey and he agreed.

At this point I was taking so little medication in comparison to what I had been before June 2021, and my googling had me convinced that I was having some sort of serotonin toxicity with the flushing and diarrhea, so my irrational conclusion was that I must have a carcinoid tumor. That fear consumed me and I had my doctor run the urine test for carcinoid tumors which came back negative.

At this point, my husband, who has been very supportive, started searching for other answers and found survivingantidepressants.org. He suggested I try doing a very slow taper and see if I could get off the medication and see if my body would reset. I talked to my primary care provider about this, and I got discouraged when my doctor found out the local compounding pharmacy would need at least two weeks before they could provide my first taper dose. I didn't want to continue with the current situation any longer, so I discontinued the citalopram at the end of September after being back at 10mg for about 3 weeks.

My symptoms are still awful, but they have improved a bit after being off the medication a week and seem so be in a positive trend. I have slightly fewer crying bouts/meltdowns. My flushing is fainter and the facial telangiectasias that developed have faded considerably. My eye pain happens in shorter segments throughout the day. I still have stomach cramping at times of the day and night, but the diarrhea has become less frequent and less severe. My sleep is still terrible, and I forgot to mention that during this four month journey I've tried clonazepam, trazadone, Lunesta, Ambien, and Xanax for sleep, and I'm still on the Ambien and Xanax. Even with those drugs I struggle to fall asleep, wake up one or more times per night, and often feel pretty hung over in the morning.

Thankfully, after spending time on this site, I have at least realized that whatever is going on is likely a nervous system reaction to the antidepressant changes that have occurred and it has given me hope that I will recover.

My questions are these:

1. What does it sound like happened when I tried to go back on the meds and developed physiological and mental symptoms and couldn't tolerate the medication? Does that sound like a sensitized nervous system that didn't want to readjust? Does it sound like I was in withdrawal the whole time? Is this likely just because of the speed and flip-floppy nature of all the changes?

2. Has anyone out there had eye burning and pain and neck and facial flushing as side effects/symptoms going on or off antidepressants?

3. Now that I've been off the medications over a week and have had some improvement, does it make sense to try to go back on to something and slowly taper or just continue to try to heal from withdrawal?

4. I have no idea what to do about the sleep meds. This is the first time in my life I've had trouble sleeping aside from one week in 2004 when I was starting citalopram. This poor sleep has been going on for four months and I'm scared. Should I stay on them until I hopefully have some improvement in sleeping on my own or try to wean off now?

5. I've been taking LDN for autoimmune disease for a few years now and it has been amazing for me. However, in trying to rebalance my nervous system, it seems like anything that affects neurotransmitters might be a problem right now? Plus there is a little bit of evidence that suggests naltrexone might affect serotonin and norepinephrine, in addition to, dopamine. Should I discontinue it, reduce it, or leave it alone?

Thank you so much for reading and for any advice/experience you can offer!

Edited November 27, 2021 by ChessieCat
added topic title before reducing original

October 8, 2021

Hello, and welcome to SA. We are a peer owned and run forum of people who have been or are getting off of psychiatric drugs. You have come to the right place. There is hope for you. We have many people on here who were in similar situations with a variety of psych meds, and they are recovering. So you are now completely off the citalopram, and the duloxetine? How often do you take the Ambien and Xanax? It sounds to me as though you are experiencing symptoms caused by both adverse effects of the drugs combined with withdrawal. Oftentimes, people are OK on a drug, but once they go off, then go back on, their system cannot handle the drug anymore, and they have symptoms.

Thank you for giving us your drug history in your drug signature.

Here is some 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 so 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

What is Happening in Your Brain

Windows and Waves Pattern of Stabilization

Also, as we are recovering, we suggest keeping things slow, simple, and stable.

Keep it Simple, Slow, and Stable

Considerations About Stability - Stop Jumping Around

Here are some techniques to cope with symptoms:

Non Drug Ways to Cope with Withdrawal Symptoms

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

I've given you quite a bit of information here. You may already be familiar with it, as it sounds like you've already been around the forum which is very good. I'll make another post to answer your questions, since this is already long.

October 8, 2021

On 10/5/2021 at 3:00 PM, FosterTheCritters said:

1. What does it sound like happened when I tried to go back on the meds and developed physiological and mental symptoms and couldn't tolerate the medication? Does that sound like a sensitized nervous system that didn't want to readjust? Does it sound like I was in withdrawal the whole time? Is this likely just because of the speed and flip-floppy nature of all the changes?

Yes, it does sound like a sensitized nervous system. You may possibly have been kindled. Yes, I believe that the speed and jumping off and on various drugs and doses may very well have caused this.

Nervous System Hypersensitivity and Kindling

On 10/5/2021 at 3:00 PM, FosterTheCritters said:

2. Has anyone out there had eye burning and pain and neck and facial flushing as side effects/symptoms going on or off antidepressants?

Yes, sore eyes can be a symptom of WD. This link has a check list that has all the common symptoms of WD. This may not be an exhaustive list - some people have unusual symptoms not on the list.

Dr Joseph Glenmullen Symptom Checklist

One member has reported facial flushing: Arbor Facial Flushing Read the post above that - this person also had the symptom.

On 10/5/2021 at 3:00 PM, FosterTheCritters said:

3. Now that I've been off the medications over a week and have had some improvement, does it make sense to try to go back on to something and slowly taper or just continue to try to heal from withdrawal?

It's really great that you have seen some improvements already after being off the drugs for a week. What exactly are your symptoms now? How severe are they? How is your eating and sleeping? Are you able to function in your daily life? I need more information before I can suggest a course of action with reinstatement. Please don't jump back on any of these drugs in the meantime.

On 10/5/2021 at 3:00 PM, FosterTheCritters said:

4. I have no idea what to do about the sleep meds. This is the first time in my life I've had trouble sleeping aside from one week in 2004 when I was starting citalopram. This poor sleep has been going on for four months and I'm scared. Should I stay on them until I hopefully have some improvement in sleeping on my own or try to wean off now?

Can you please be more specific about your sleep patterns? How many hours a night do you sleep? Please don't do anything different with the sleep meds just yet.

On 10/5/2021 at 3:00 PM, FosterTheCritters said:

5. I've been taking LDN for autoimmune disease for a few years now and it has been amazing for me. However, in trying to rebalance my nervous system, it seems like anything that affects neurotransmitters might be a problem right now? Plus there is a little bit of evidence that suggests naltrexone might affect serotonin and norepinephrine, in addition to, dopamine. Should I discontinue it, reduce it, or leave it alone?

I don't know what LDN is.

Yes, anything that affects neurotransmitter may be a problem, but honestly, I wouldn't make any more changes to drugs or supplements at this time. You've already made so many drug changes in the past several months, and you system really needs stability right now. I would leave it alone for now. Personally, I am not familiar with naltrexone.

Please let us know how you are doing, and keep us posted.

October 8, 2021

getofflex, thank you so much for your responses! I've felt so alone even though I know so many others here have felt/do feel similarly. Some of the linked material I've read previously and some was new to me, but it's all helpful. I have responses to your questions and additional questions of my own below.

2 hours ago, getofflex said:

Yes, it does sound like a sensitized nervous system. You may possibly have been kindled. Yes, I believe that the speed and jumping off and on various drugs and doses may very well have caused this.

Nervous System Hypersensitivity and Kindling

Even after reading several things about being kindled, which I agree I might be, I don't understand the implications of being kindled on recovery. Does it mean recovery is slower or even impossible, or does it just mean I'm more likely to have adverse reactions if I make changes? Is there more to it than that?

3 hours ago, getofflex said:

It's really great that you have seen some improvements already after being off the drugs for a week. What exactly are your symptoms now? How severe are they? How is your eating and sleeping? Are you able to function in your daily life? I need more information before I can suggest a course of action with reinstatement. Please don't jump back on any of these drugs in the meantime.

Can you please be more specific about your sleep patterns? How many hours a night do you sleep? Please don't do anything different with the sleep meds just yet.

While still on the citalopram my symptoms were of greater intensity and frequency than they are now, so there is small improvement; I know that any improvement is good, but I'm a "fix it now girl", so this is really hard. My symptoms are: poor sleep, sore eyes, blurred vision, flushing of my chest, face, and neck, headaches, stomach cramps, occasional diarrhea, inappropriate anger and crying, intense anxiety, lack of motivation. My windows are short, about an hour or two at a time and my waves last probably 2-6 hours at a time currently and are always a different combination of symptoms. In my windows, I feel like I'm at about 90% of my normal and function fairly well; flushing and lack of motivation are two symptoms that remain even during windows. In windows I am able to go to the gym, cook, do chores, and occasionally work (I work part time on my computer for a business that I own with my husband). In a wave, my physiological symptoms are usually moderate and occasionally severe. My psychological symptoms are generally severe enough that I'm saying things like "I can't do this", "I'm never going to get better", crying and having anxious or angry outbursts. My eating is pretty good. I eat really healthy food and am eating normal quantities and at normal frequencies for me. I am not drinking caffeine or eating too close to bed.

Sleep in another story; it's terrible. For years I've gone to bed about 11:30 pm - midnight, fallen asleep almost immediately, and gotten up naturally between 8:00 am and 9:30 am feeling very refreshed. Since this has started, I have continued going to bed at the same time and giving myself that window for sleep, but for multiple months (before trying sleep meds) I was unable to fall asleep for 1-2 hours after going to bed, I would sleep lightly for 30 minutes to an hour and then be up again for an hour or so, continuing this cycle until about 6 am, at which time my body would say "nope, no more sleep for you". So, on a good night I was getting about 3 hours of light sleep and feeling like a zombie all day.

Because of the terrible sleep, my doctor prescribed some various sleep aid medications to try and we landed on Ambien 10mg before bed and Xanax 1mg the first time I wake up in the middle of the night after that. I thought I was getting about 7 hours of sleep with a break in the middle on the sleep meds, but I purchased a sleep tracker that has shown me that I am getting about 5.5 hours of light sleep with about 2.5-3 hours of wakefulness in the middle. I'm only aware of about 30 minutes of that wakefulness, but it's happening according to my brain waves. I am also not getting any REM or deep sleep according to the tracker. I still feel terrible every morning but a bit less terrible than before I started using sleep meds. I really don't know what to do. My doctor thinks both the Ambien and Xanax are fine for long term at these doses, but he also has never seen someone have my difficulties with SSRI's/SNRI's.

My overall daily functioning is at about 30-40% of what it was. I do the non-negotiable things daily, and sometimes force myself to do some additional things while I'm in a window like additional chores, walking the dogs, gardening, or going to the gym. I have no desire to work, I'm scared to commit to my typical volunteer activities, and I haven't felt like doing any of my typical hobbies.

Hopefully that helps with regard to whether to reinstate an antidepressant and what to do regarding sleep meds. Thanks soooo much for the help!

October 9, 2021

16 hours ago, FosterTheCritters said:

Even after reading several things about being kindled, which I agree I might be, I don't understand the implications of being kindled on recovery. Does it mean recovery is slower or even impossible, or does it just mean I'm more likely to have adverse reactions if I make changes? Is there more to it than that

My understanding of it is that each time we go on and off the drugs, our nervous systems become more sensitized, and the withdrawal symptoms become more severe, and perhaps we will have adverse effects on a drug that we could previously tolerate. For me personally, it means, never go on these drugs again, and allow my nervous system to heal naturally on it's own.

16 hours ago, FosterTheCritters said:

I'm a "fix it now girl", so this is really hard.

If I were you, I'd resist this tendency. I've seen so many people here try to fix themselves by going on more psych meds, and they end up in a worse mess than before. The best thing to do, in my opinion, is to allow time to heal your system. Please read this post from one of our staff who has recovered from psych meds:

Brass Monkey Giving Up Control

16 hours ago, FosterTheCritters said:

My symptoms are: poor sleep, sore eyes, blurred vision, flushing of my chest, face, and neck, headaches, stomach cramps, occasional diarrhea, inappropriate anger and crying, intense anxiety, lack of motivation

These are all classic symptoms of WD from psych meds. Please see:

Glenmullen Withdrawal Checklist

Neuro Emotions

16 hours ago, FosterTheCritters said:

My psychological symptoms are generally severe enough that I'm saying things like "I can't do this", "I'm never going to get better", crying and having anxious or angry outbursts.

Don't worry, this is very common, and temporary. I have days like this myself. Just realize that our thoughts are just thoughts, we don't have to believe them. Here is a technique that a lot of us use:

Acknowledge, Accept, Float

The sleep issues you describe are also typical of withdrawal. The nervous system tends to be activated while we are in withdrawal. This will very gradually improve. Insomnia was and still is my most challenging symptom.

16 hours ago, FosterTheCritters said:

My overall daily functioning is at about 30-40% of what it was. I do the non-negotiable things daily, and sometimes force myself to do some additional things while I'm in a window like additional chores, walking the dogs, gardening, or going to the gym.

Just FYI intense exercise can activate your nervous system, and worsen your sleep and cause more anxiety, and other WD symptoms. If it were me, I would only do gentle exercise like walking.

Even though you had adverse reactions to both citalopram and duloxetine, you could possibly try a small reinstatement of one of them. I will confer with the other mods, and one of us will get back to you. In the meantime, please don't do any drug changes. Thank you.

October 9, 2021

18 hours ago, FosterTheCritters said:

Because of the terrible sleep, my doctor prescribed some various sleep aid medications to try and we landed on Ambien 10mg before bed and Xanax 1mg the first time I wake up in the middle of the night after that.

Thanks again for more info!! Do you also have thoughts on the 10mg Ambien and 1mg Xanax that I take for sleep? I take them daily and they’re a bit helpful, but I don’t know what to do. Thanks!

October 9, 2021

Hello, @FosterTheCritters

Yes, I agree with @getofflex, you had all the signs of kindling from too-high duloxetine reinstatement. Serotonin toxicity might describe your ongoing symptoms on those high dose of duloxetine, which also may have conflicted with other drugs you were taking.

Your psychiatrist deserves to be spanked.

How did you finally go off duloxetine? Was it a cold switch to 10mg citalopram? Did you simply quit the citalopram?

What drugs are you taking now, at what times o'clock and dosages?

Because of these drug mishaps, you should consider your nervous system to be bruised, it needs to be treated gently. Recovery will be very slow and halting, in the waves and windows pattern. The waves may sometimes be alarming.

It's good you're seeing windows. How do they relate to the dosing of your other drugs?

Please put ALL your drugs in this Interactions Checker and post the report or a link to it in this topic.

October 10, 2021

Thank you @Altostrata! I had the serotonin syndrome theory also, but here's a question.

I have been completely off all SNRI/SSRI medication for 10 days and still have the symptoms that are consistent with serotonin syndrome although slightly lessened. Do you think it's possible I could still have serotonin syndrome with the antidepressants completely out of my system?

59 minutes ago, Altostrata said:

How did you finally go off duloxetine? Was it a cold switch to 10mg citalopram? Did you simply quit the citalopram?

Yes, I did a cold switch from 30mg duloxetine to 10mg citalopram because of the horrible symptoms I was having. I'd had a successful cold switch from 40mg citalopram to 60mg duloxetine 5 years ago (same psychiatrist), and he thought it'd be successful for a second time even though things were already going poorly. After the switch to citalopram, I sat at 10mg for a few weeks still with terrible symptoms, went up to 20mg of citalopram for a few weeks because my psychiatrist was sure that more citalopram would fix my symptoms, when there was no improvement in my symptoms I dropped back down to 10mg of citalopram on my own after I continued to feel awful and hopeless without reprieve, and then hard quit after 3 more weeks at 10mg.

1 hour ago, Altostrata said:

What drugs are you taking now, at what times o'clock and dosages?

I'm unfortunately not super-consistent with taking things at the same time each day, but this is approximate:

AM

9:00 AM
- levothyroxine (T4) - 25mcg
- liothyronine (T3) - 130mcg
10:00 AM
- hydroxychloroquine - 100mg
- estradiol topical gel
- testosterone topical gel
- container of AM supplements
1:00 PM
- container of mid-day supplements
9:00 PM
- low-dose naltrexone 4.5mg
11:00 PM
- hydroxychloroquine - 200mg
- valacyclovir - 1mg
- progesterone - 200mg
- heparin - 50cc
- ibuprofen - 400mg
- estradiol topical gel
- container of night supplements
12:00 AM
- zolpidem - 10mg
2:00 AM
- alprazolam - 1mg

2 hours ago, Altostrata said:

It's good you're seeing windows. How do they relate to the dosing of your other drugs?

I don't know if they relate or not. I almost always have a window from the time I get up until late morning. I will often but not always get a wave late morning. I often get waves in the early afternoon whether I've taken my mid-day supplements or not. I also often get waves between 8:30 and midnight. I haven't found any particular triggers or relationships yet.

I have attached my interaction report; it seems benign thankfully.

FosterTheCritters_DrugInteractions.pdf

October 10, 2021

2 hours ago, FosterTheCritters said:

I have been completely off all SNRI/SSRI medication for 10 days and still have the symptoms that are consistent with serotonin syndrome although slightly lessened. Do you think it's possible I could still have serotonin syndrome with the antidepressants completely out of my system?

No, you cannot have serotonin syndrome unless the drugs you're taking now are serotonergics. They do not appear to be serotonergics.

Rather, your nervous system got a battering from the psychiatric drugs and needs to rest.

12 hours ago, FosterTheCritters said:

the 10mg Ambien and 1mg Xanax that I take for sleep?

Please include these in your signature. After a while, these are very likely to cause adverse effects. If you have been taking them every day, it's possible you're already physiologically dependent on them and will need to taper them to go off. LDN is also a neuroactive drug.

These 3 drugs -- Ambien, Xanax, and LDN -- may be counteracting withdrawal symptoms from the antidepressants. Your waves and windows may be related to taking these and other drugs and supplements on an inconsistent schedule. You would need to be consistent to identify which work and which are causing problems.

B vitamins and vitamin D may be activating in sensitized nervous systems, causing anxiety, insomnia, etc.

You're taking so many drugs and supplements, which have their own potential adverse effects, I'm not sure there's anything else I can advise anything other than to stay calm and allow your nervous system to settle down from the antidepressants.

October 16, 2021

@Altostratathank you for your directness. I do realize I have a lot of variables in play. I’ve made some simplifications to supplements to see if they help.

I am experiencing so many physical symptoms but none as distressing as the insomnia. Since being 100% off duloxetine/citalopram, I often am too activated to fall asleep on my own and even when I do, my body won’t stay asleep on it’s own for more than a few minutes at a time. My quality of sleep is terrible, no REM and no deep sleep. I am so worried for my long term health because of the lack of sleep. All this AND I have to taper off sleep meds at some point. In your experience, do people with this level of insomnia recover healthy sleep over time? It is so hard to have hope when I feel like a walking zombie everyday. Thanks 😊

October 16, 2021

On 10/9/2021 at 6:39 PM, FosterTheCritters said:

9:00 PM
low-dose naltrexone 4.5mg

11:00 PM
hydroxychloroquine - 200mg

valacyclovir - 1mg

progesterone - 200mg

heparin - 50cc

ibuprofen - 400mg

estradiol topical gel

container of night supplements

12:00 AM
zolpidem - 10mg

2:00 AM
alprazolam - 1mg

All or any of these drugs you're taking in the evening may affect your sleep. It's very possible that you can't sleep because you're taking too many sleep-inducing chemicals or drugs that would be activating on their own.

I can't even begin to look into your containers of supplements. B vitamins and vitamin D can affect sleep, as can other vitamins and supplements. Are you also taking megadoses?

How did you ascertain 4.5mg LDN was the right dosage for you?

On 10/9/2021 at 6:39 PM, FosterTheCritters said:

testosterone topical gel

Even the testosterone you're taking earlier may be affecting your sleep.

Is one doctor prescribing all these steroids for you? Are you sure they're beneficial?

Plus, if you take your drugs inconsistently, particularly Ambien, Xanax, and LDN, that may be generating all kinds of symptoms. If your dosing is inconsistent, it's impossible to track down what's causing what.

Honestly, I don't think I can unravel this without questioning your entire regime. You may very well be overtreating yourself. Given your health problems, I don't have the expertise to weigh in.

October 16, 2021

@FosterTheCritters

Hello!

I'm sorry that you had and still have to go through such a difficult time! I think you’re in very good hands in this forum.
To your questions:

I have increased escitalopram by a total of 0.5 (!) mg to 25.5 mg from 20.9. on, I already had 25 mg. I took the 0.25 mg with the liquid escitalopram. I really thought I couldn't go wrong with such a small dose increase. Thought wrong.
1 week ago I developed intense anxiety and fear (mostly in the morning), restlessness, diarrhea (mild), muscle twitching, stomach cramps etc and also flush symptoms on the face that occur at the same time every afternoon. So I reduced the 0.5 mg to 0.25 two days ago.

In retrospect, I know these flush-symptoms from a previous use of tramadol (pain reliever) after a herniated disc (the nose is always the reddest 🙂).
Tramadol is structurally closely related to the SSRI and also increases the serotonin concentration in the synoptic cleft.

So yes, I think your symptoms are from restarting the fluoxetine. Unfortunately I can't say anything about the eyes, but I could well imagine it’s related, since there are many people with eye /vision problems here ...

I wish you all the best and hope that you will feel better soon!

October 21, 2021

@CharlieBrown13, thank you for your kind words and for sharing your recent experience; it's very helpful to know others are having a similar experience. I'm sorry that you are having a difficult time as well!

November 17, 2021

After Alto's response to my last post, I found myself feeling discouraged about recovery because I have complicated health conditions and I take many medications and supplements. I have fortunately recently turned a corner mentally, though, and don't want to believe that because my situation is complicated that I cannot heal. I take full responsibility for the fact that one or more of the things I take daily might be contributing to my insomnia. I have for a while now, been removing some things and adding in others and keeping a diary of symptoms and sleep and will continue this way until I know what my best set of supplements are. I have also worked on strict sleep hygiene, which I did not have before withdrawal. I am determined to guide myself, to the extent I can, back to health.

By far, sleep is my worst problem. I have difficulty falling asleep, awaken many times per night, and don't get into anything but a light sleep. I am working on tapering down Xanax per the outlined schedule and will tackle the Ambien after that. Since my situation is so complex, rather than seeking advice specific to me, I want to ask more general questions that can help inform me and possibly guide my process. Thanks in advance for any answers you can provide!

Has any SNRI/SSRI long-timer (10+ years medicated), who became destabilized due to a too fast taper or cold-turkey, who had long-lasting insomnia as a discontinuation syndrome symptom ever fully recovered? Meaning, has anyone gotten back to high quality sleep on a regular basis? I have seen so many people on the forum who are still struggling several years out and am struggling to find the SNRI/SSRI withdrawal insomnia success stories.
@getofflex @Altostrata how much has your sleep improved? What was your sleep improvement like over time?
@Altostrata what symptoms was lamatrigine prescribed for? How exactly did it help you?
Have you seen anyone who was severely sensitized to an SNRI/SSRI successfully reinstate on an extremely low dose of the same medication 6+ months later? (I have read everything in "About reinstating and stabilizing to reduce withdrawal symptoms". I know that being overly sensitized or kindled reduces chances for success of reinstatement, but maybe someone like that has had success?)
Have you seen anyone who was severely sensitized to an SNRI/SSRI successfully start an extremely low dose of a different medication? (I have read everything in "About reinstating and stabilizing to reduce withdrawal symptoms". I know that being overly sensitized or kindled reduces chances for success of reinstatement, but maybe someone like that has had success?)
Does successful low-dose reinstatement ever relieve insomnia?

I know that nothing can be generalized with psychiatric drugs; it's a completely individual experience. I am looking for inspiration and information rather than specific recommendations. Thanks so much!!

November 17, 2021

1 hour ago, FosterTheCritters said:

I have fortunately recently turned a corner mentally, though, and don't want to believe that because my situation is complicated that I cannot heal.

It's really great that you have turned a corner. We have others on here who had complicated situations, and they have gotten off the drugs and healed! You can too!

1 hour ago, FosterTheCritters said:

@getofflex @Altostrata how much has your sleep improved? What was your sleep improvement like over time?

Insomnia was by far my worst and most difficult and challenging symptom. I will share with you how I have dealt with it.

1. I worked on accepting the fact that I couldn't sleep enough. My husband, a recently retired medical professional, told me that "insomnia will not kill you". That was very reassuring.

2. I stopped using prescription drugs to help me sleep. Until almost 2 years ago, I was using trazodone and Xanax every few nights to help me get a good nights sleep. I stopped doing that in December of 2019.

3. I researched how to strengthen a good circadian rhythm, and worked on my sleep hygiene.

4. I keep a journal of my daily activities and symptoms, to see what correlations there are between sleepless nights and the prior days activities, foods, etc. That has helped a lot.

I have to say, I'm very thankful to report that my sleep has been improving, but the improvement has been very slow and gradual, and at times I still have trouble with sleep. I find that my sleep trouble is triggered by MSG and aspartame, stress, severe weather (storms) and sudden weather changes (of which there are a lot in the Midwestern USA) , hot flashes of menopause, being involved in toxic people and their drama.

Here is a link to our topic about insomnia:

Withdrawal Insomnia

November 19, 2021

Thank you @getofflex for sharing your experience with sleep improvement. I have to stay focused on the long game and resist the idea that there is a magic fix (if only I did x, my insomnia would be eliminated).

Something else I've wondered about. Do people on this forum ever connect in-person or over face-to-face internet software? I have been especially lonely since this started, and I'd love to have a real chat with someone who has had or is having a similar experience. If it's allowed, how do others facilitate this? Thanks 🙂

November 19, 2021

This forum has several threads where you might be able to find the types of support you are looking for.

Relationships and Social Life

November 19, 2021

I am also going through very bad withdrawal insomnia I can chat if you want to whenever. It is a very lonely thing indeed

November 20, 2021

Thank you @Ktven48 😊 I’m very sorry you are also going through this awfulness! I would very much like to talk. I will message you to coordinate.

November 20, 2021

You’re Not too far from me . I am in Chicago

November 26, 2021

Is there anyone here who was on Ambien and benzos for sleep throughout protracted SNRI withdrawal and managed to stabilize your CNS or at least get some improvement while on them? I started the Ambien and Xanax before I found this forum, otherwise I would have steered clear. Since I can't risk more CNS destabilization, my plan is to taper the Xanax then the Ambien after I reach a more stable place. But I just don't know if I can get to a more stable place on Ambien and Xanax.

My sleep has been getting worse over the last week after a few weeks of improvement. I'm wondering if it's a tolerance developing to one or both meds or just a bad wave.

Please, if you've had experience with Ambien and benzos during protracted withdrawal, would you reach out? I'm flailing and desperate and I'm trying to find some hope that I can still heal somewhat while on Ambien and Xanax, as well as, hope that I'm not going to become tolerant to them.

Thank you to anyone who takes the time to reach out!

FosterTheCritters: 19 years of antidepressants, tried various ways to get off and I'm a mess

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