JimB73: Fluoxetine Withdrawal Hell (I think?) For About a Year

[JimB73]

Hello everyone,

 

I’ve been working on this for weeks – trying to get it perfect, but also because being on the computer aggravates my symptoms.  Recent developments have made this time-sensitive, so here we go, as imperfect as it may be.

 

49-year-old man here, on a nightmarish journey of crushing depression and serious physical issues for the last 11 months. I'm thankful to have found this website - doing my best to educate myself and hoping to get some valuable feedback.  Apologies for the length and breadth of this post, but don’t want to miss anything that might elicit insight.

 

All details are below, I would like opinions on the following (I am aware that users of this website are not doctors and cannot give medical advice, so please excuse my phrasing if it crosses over into “medical advice” territory):

 

#1 – Are my symptoms consistent with withdrawal syndrome?

 

#2 – In light of all of the other possible factors (previous bouts of vertigo, COVID infection and vaccine, and now, Ehrlichiosis diagnosis, which is a tick-borne illness) in my case, do you think I’m dealing with withdrawal syndrome, or something else?

 

#3 – Has anyone else had confusion with determining a “Lyme Disease (or other tick-borne illness) vs. Antidepressant Withdrawal” diagnosis?

 

#4 - Is fluoxetine likely to cause side effects this severe for this long, even after tapering?

 

#5 - Should I consider reinstating fluoxetine, even after 11 months?

 

 

QUICKIE TIMELINE

2002: began using antidepressants (Paxil); continued to use various antidepressants off and on over subsequent years; never used more than one antidepressant at a time.

 

2013 to July 2022: used Fluoxetine consistently.

 

April 2022: contracted COVID, with significant neurological symptoms that lasted a couple of months (brain fog and migraines; though I’ve been a lifelong migraine sufferer, the post-COVID migraines were worse and had a different quality about them).

 

Mid-July 2022: completed what I thought was an ultra-conservative, long-term taper off of Fluoxetine over about 18 months; taper involved skipping dosage days for several months (I did not know better at the time).

 

September 2022: crushing, far-worse-than-ever-before depression sets in. 

 

December 2nd, 2022: received the COVID booster (my 4^th COVID dose) and flu vaccine. 

 

December 6th, 2022: Vertigo attack (I had a previous one in 2018). 

 

January 1st, 2023:  Ring in the new year with onset of new, extreme physical symptoms (feeling of electricity coursing through my head, extreme insomnia, intense neck and jaw pain, worsening tinnitus, other ear issues, unsteady eyes).

 

 

DETAILED VERSION

 

HISTORY

Lifelong sufferer of depression, generalized anxiety, social anxiety disorder, chronic blushing, and migraines. First antidepressant was Paxil in 2002. I took it for about a year; it had very limited effectiveness, along with all the usual side effects (completely eliminated libido, severe and sudden weight gain, lethargy, and dry mouth). I don't recall whether I tapered or not, but I remember feeling VERY sick for quite a while after quitting – the brain zaps and general disequilibrium feeling in my head were so extreme that I worried about brain cancer.

After stopping Paxil, I was off and on many other antidepressant/anti-anxiety meds over the next 10 years, including Zoloft, Prozac, Effexor, Lexapro, Wellbutrin, Klonopin, and Propranolol (I was never on more than one medication at a time).  They all had limited to no effectiveness. I can’t recall specific dosages, but I also don’t recall having any significant withdrawal symptoms when stopping or switching meds

My most recent AD was Fluoxetine.  I had taken it steadily since 2013, though it also had little to no effectiveness. I knew that at some point I wanted to be rid of these chemicals in my body, especially since I didn’t believe I was benefiting. I did not anticipate any problems with withdrawal – I’d always heard that fluoxetine is the easiest SSRI to wean off of, and I thought I had an ultra-conservative, long-term taper plan.

 

TAPER

I had already been lowering my dosage steadily over the years:

60 mgs daily in 2013-2014.

40 mgs daily from 2015 to mid-2020.

20 mgs daily from mid-2020 to early-2021.

 

Prior to 2021: I took a very haphazard approach to Fluoxetine use.  When I felt ready to reduce my dosage, there was no tapering, I would just immediately go to the lower dosage.  I was also not very diligent in taking the pills, and probably missed an average of a dose per week.

 

2021: I began tapering down from 20 mgs daily by using an "average daily dose" approach, skipping one day a week for several months, then skipping two days per week for several months.  At the beginning of the year, I was taking 140 mgs per week, and by the end of the year, I was taking an average of 90 mgs a week.  I had no idea of the significance of skipping daily doses.

 

January 2022 - 80 mg per week, taken as 20 mg pills 4 days per week (i.e. - skipped three days per week).

 

February 2022 – 70 mgs per week, 1 10 mg pill each day of the week.    

 

March – 60 mg per week, taken as 10 mg pill 6 x week (skipped 1 day a week).

 

April – 50 mg per week, taken as10 mg pill 5 x week (skipped 2 days a week).

 

May – 40 mg per week, taken as 10 mg pill 4 x week (skipped 3 days a week).

 

June – 30 mg in 1^st week of June, and declining by 5 mg every week thereafter.  So, for first week of June, I took a 5 mg pill 6 x week; then 1 less 5mg dose a week for the next 6 weeks (i.e., by mid/late July I took a single 5 mg pill for the week, then declared myself off antidepressants forever).

 

Bottom line: I had been skipping doses intentionally for about a year and a half.

 

 

SYMPTOMS

In September 2022, about a month and a half after completion of taper, a depression set in, unlike any depression I’ve ever experienced before (and I’ve been depressed enough before to attempt suicide).  It continues to this day.  This is a “soul-crushing depression meets midlife crisis meets existential dread x 1,000”.  It is a miracle I’m still here, as I’ve been actively suicidal pretty much every day in the 10+ months since the onset of this depression (yes, I’ve sought treatment and am seeing a therapist weekly, as useless as it seems to me). 

 

I also experienced some feelings during this depression that I’ve never had before.  There have been times where I felt like I was about to lose my mind, and felt like I wanted to scratch out of my own skin, or run through a plate glass window (akathisia?).  Other times, I would look at people and think that I must be an alien and just realizing it, because everyone else seemed like such a foreign species to me, and I was wondering if I had somehow busted through some sort of thin curtain to another lonely, hellish reality (derealization?). I've always had a problem feeling is if I belonged, but this was to an infinitely higher level.  I truly wondered at some points if I was on the verge of a psychotic break.

 

In December 2022, 4 days after I received the latest COVID and flu vaccines, I had a vertigo attack. After a few days, I was able to somewhat function, get out of bed and take care of myself, but my head remains, 7 months later, in post-vertigo limbo: my head feels “not quite right”; a chronic, low-grade dizziness or lightheadedness that feels like I’m constantly on the verge of another vertigo attack; like my eyes and brain are not working together; sudden sensations of an internal shift in my head; or feeling like my body is moving without the rest of me.  (This symptom remains, dizziness improves marginally month-by-month, but severity fluctuates daily.)

 

Then, on January 1^st of this year, a whole new host of symptoms hit me like a freight train, starting with an instant onset of severe neck and jaw pain. 

 

Here’s a complete list of physical symptoms I’ve experienced (along with any progress that’s been made):

Dizziness: as explained above; my head feels “not quite right”; a chronic, low-grade dizziness or lightheadedness that feels like I’m constantly on the verge of another vertigo attack; like my eyes and brain are not working together; sudden sensations of an internal shift in my head; or feeling like my body is moving without the rest of me.  (Still problematic, dizziness has improved marginally month-by-month, but severity fluctuates daily.)

 

Electricity feelings in head: severe and much more frequent than the transient brain zaps I’ve experienced before (though I get versions of those too); feels like there’s a motor constantly churning in my head.  Less often, the feelings extend to the face as well – sporadic twitches near right eye/temple, cheek, and occasionally mouth/lips, to the point that I feared I might have a seizure or develop Bell’s palsy.  (This symptom has progressively lessened: I mostly only notice this at night when laying down to sleep, and it’s much less severe).

 

Neck pain and tightness: pain/tightness/discomfort high up on the back of the neck, near the occipital area; certain neck movements provoke dizziness, ear and eye symptoms.  (The neck pain is still present but much improved, and movements don’t provoke severe symptoms anymore)

 

TMJ-type jaw pain:  not PAIN exactly; started with very stiff and sore jaw, to the point that it was difficult to begin the movement of opening my jaw wide; a ton of clicking when I would eat.  It has now progressed to more of a hyper-awareness of my jaw; feeling that I don’t know where the resting position of my jaw is anymore; that my bite is off; that my teeth no longer fit in my mouth; that it is an effort and difficult to move my jaw/teeth from the resting position to the chewing position.  I have had issues in the past with biting my tongue or feeling my teeth click together during the night, but I never considered it problematic. It now happens more frequently at night, but sometimes even during the day. I also have occasional “tics” or spasms that make me wonder whether this is a mild version of tardive dyskinesia, where my jaw suddenly pulls to one side or the other, or trembles for a couple of seconds.  (This is still one of my primary symptoms.  I have seen 2 TMJ specialists before being aware of the possible AD withdrawal issue: one wanted to sell me a $5,500 mouthguard – not a typo – and said he thought I would see significant relief in my symptoms, but could not guarantee TMJ was the root of my issues; the other wanted to sell me Invisalign, claiming that my teeth were the issue – I’ve had slight overcrowding of teeth my whole life – even though he didn’t look at my films and barely examined me. I did not take either suggestion, and have an appt with a different TMJ specialist in August).

 

Insomnia: began experiencing this about a year before this whole medical episode; I thought it was just a part of aging, but now I wonder if it was an early withdrawal sign, from when I began to skip Fluoxetine days. (It is extreme, to the point that I’m not sure that I’ve had a real night’s sleep in almost a year; and this is really creating a vicious circle with my depression).

 

Tinnitus: have had very mild symptoms for years, but the severity has increased dramatically now, and it prevents me from sleeping; thankfully, it usually only bothers me at night or when I’m in a very quiet room; generally in both ears, but changes from one to the other from time to time; feels like the “electricity” feelings in my head are releasing out of my ears at night. (Still one of my primary symptoms; shockingly, I have grown slightly used to it, but it is still a factor in my insomnia).

 

Hyperacusis: only experience this occasionally; at those times, it feels like certain sounds are scraping across my auditory nerve and traveling down into my whole body.  (One of my lesser symptoms).

 

Ears: occasional mild feelings of fullness, pressure, or pain in ear; when I was experiencing a lot of neck pain, it would occasionally feel like “pulling” on the inside of the ear, which led me to think many of my symptoms were a deep muscle/fascia issue in the neck. (This is not gone, but less frequent and less problematic).

 

Eyes: feel slightly unsteady or overactive at times, like a mild nystagmus (but could not be viewed by others), like they are moving involuntarily; difficulty focusing back and forth between near and distance vision. (This was extremely problematic for the first few months; eyes don’t really bother me much anymore, other than that after watching TV or reading for extended periods of time).

 

A few other possibly significant points regarding symptoms:

 

Some of these symptoms precede the end of my antidepressant usage, as I’ve tried to detail above, so I don’t know which symptoms, or parts thereof, to attribute to AD withdrawal. Most significantly, I had my first bout of vertigo in 2018, and a couple of bouts of non-vertigo dizziness that last only a day or two in the ensuing few years.  There was no cause found…. I was under extreme stress at work during that time… and it's even possible I was not using Prozac consistently during that time period…. All part of the medical mystery that is my life now.

 

There were some other minor issues that in retrospect may be relevant.  Several months before the onset of symptoms, I began to experience discomfort in my neck, mostly during my daily commute – I could not find a resting position while sitting on the bus that was comfortable… it was like my neck could no longer support my head. 

This may have coincided with the beginning of the tapering process, but I never attributed it to that.

 

Around the time the depression set in (1 month after discontinuation, and a few months before onset of physical issues), I thought I felt a lump in my stomach.  I couldn’t usually find it upon deep palpation, but it was just a sense that there was something like a knot in there.  Ultrasound was negative.

 

In February, I had more-than-mild stomach pain for a couple of days.  I thought I was developing an ulcer due to the stress of being in constant mental and physical pain. The stomach pain went away in a couple of days, and endoscopy showed GERD (which I’d had years ago when I was overweight).

 

For a period of a few weeks shortly after onset of physical symptoms, I had vague tingling and numbness in hands and feet.  This coincided with thinking that my issues were neck related, and I had neck and spine MRI’s. 

 

I fully acknowledge that some of the above symptoms may have been psychomatic… I’d never really had health anxiety before, but it was raging during this time.

 

Self-massaging anywhere on my face/temple/skull/neck elicits some symptoms – deeper, rougher massages definitely feel like muscles in those areas (masseter, temporalis, etc.) are tight and sensitive; but even light stroking/massage of those areas sometimes sends radiating sensations (sometimes achy, sometimes painful, sometimes just a general non-pain sensation) into teeth, jaw, face, other areas of head.  So I don’t know if this indicates the underlying problem is skeletal/muscular, neurological, or other.

 

Sometimes, computer use aggravates symptoms.  This is usually the case after a certain period of time, probably due to eye fatigue.  But it’s especially true when the ergonomic setup is not perfect.  Of course, we know ergonomically incorrect computer use can lead to all sorts of bodily dysfunctions, but my version is pretty extreme.  When I use my home computer (which I almost completely avoid using and is why it’s taken me so long to get around to writing this), within 15 or 20 minutes, my ears start ringing much louder than usual, my eyes get that “bouncy” feeling, and my neck starts to ache.  This was originally what led me to think this was all due to a neck issue.

 

 

DIAGNOSES RECEIVED OTHER THAN WITHDRAWAL SYNDROME

 

Most of my symptoms seem to fall under the neurology umbrella, but I have gone down many different medical roads thus far. I have seen 3 ENT’s, 2 neurologists, a neuroopthalmologist, optometrist, 2 TMJ specialists, 3 different physical therapists, a pain management specialist, and an infectious disease specialist. 

 

At various times, after hours of research that probably did nothing but ramp up my anxiety and deepen my depression, my own gut feeling had me convinced that the root cause of my issues was:

 

A vestibular disorder or inner-ear issue (ie – secondary to the vertigo);

Cervical instability;

Muscle or fascia tightness/spasms in neck;

A neurological disorder;

A vision issue;

Long-haul COVID and the booster vaccine;

Entirely psychosomatic-induced, without any underlying abnormalities (Tension Myositis Syndrome, for those familiar with Dr. John Sarno).

Antidepressant withdrawal syndrome

 

And of course, the problem with some of these diagnoses is that SSRI’s are the prescribed method of treatment.

 

Officially, after many many doctor’s appointments, I’ve received diagnoses of:

 

1 - Vestibular migraine.  The doctor was VERY certain based on my history of regular migraines, unreasonably so in my opinion, as I had not yet received any imaging to that point; this was also when I was only a couple of months into physical symptoms; I wonder if that doctor knew the symptoms have lasted for 6 months if he would come off of that diagnosis.

 

2 - A “probably Meniere’s disease” diagnosis (2 neurologists since have expressed extreme skepticism at that diagnosis)

 

3 - BPPV: I absolutely believe this to be incorrect, though this neurologist is supposed to be an expert diagnostician, and is actually referred to as “the Dizzy Doc”.  I won’t go into all of my reasons for skepticism, but even her hand-picked physical therapist expressed skepticism when the Epley maneuvers he performed on me didn’t elicit nystagmus or dizziness (above what I experience every day).  Also, this ‘expert” doctor originally said she believed ALL of my other symptoms beyond the dizziness are due to stress.  At my follow-up appt, I told her that the Epley maneuver did not resolve my symptoms, and that I now suspected antidepressant withdrawal, she half-mocked me, and stated that dizziness would not be caused by AD withdrawal (!!).

 

4 – A “possible PPPD” diagnosis.  I don’t know how helpful this is in any event, as it just seems to be a catch-all for unexplained dizziness.      

 

5 – THE BLOODWORK FOR THIS ONE JUST CAME IN YESTERDAY, HENCE MY RUSH TO POST THIS. 

Based on a friend’s recommendation, and just thinking it was another medical box I was checking off, I visited an infectious disease specialist to rule out Lyme disease.  I had been tested a few months before, but only for Lyme, not for other tick-borne illnesses.  The results came back yesterday positive for Erlichiosis.  Now I am really at cross-roads, as the doctor wants me to start Doxycycline…. Assuming that I have antidepressant withdrawal, I know that it is not great to introduce any new medications, especially one as strong as Doxy, into your system.  I don’t have great faith in this doctor, nor in the accuracy of these tests in general, to take the Doxy “just in case” all my issues are due to Erlichiosis.

 

 

My gut feeling is that I am dealing with withdrawal syndrome.  Though given my confounding factors, the truth is probably that more than one of these factors are contributing to a just completely blown-out nervous system.  Withdrawal syndrome also accounts for the different-and-more-severe-depression; before, I had just thought the depression was coincidental to my physical symptoms, or that the depression had manifested itself physically (I still believe this to be partly true).  Very interested in other people’s takes that have experienced something similar…. Especially those of you that may have had tick-borne illnesses.
 

 

TREATMENTS SO FAR

 

Neck: my pain management specialist doctor suspected cervical instability as the root cause of all the issues, and early on, I agreed - based on that, I’ve had a facet joint injection, an occipital nerve block, and a hydodissection of the SCM muscle.  None of these have provided any relief from symptoms.  The neck pain is not as severe now, but I attribute that to the passage of time.

Headaches: although I haven’t had many headaches as a symptom, the pain management doctor did administer Botox for migraine after I told him about the vestibular migraine diagnosis.  It had no effect, other than increasing my dizziness slightly for several days after.

 

TMJ: I tried a $30 over-the-counter moldable mouthguard; I wore it for about a week, but I felt that it made my jaw worse; my jaw seemed frozen into that slightly-agape position upon waking up, and it took a while before it would loosen up; ever since the mouthguard usage, I feel even more of a “my teeth don’t fit anymore” feeling.

 

Depression: I went for a series of 6 Ketamine infusions in May 2023; did not tolerate it well, I only made it through 4 sessions; no improvements to depression, and the infusions made me very nauseous and set me back a couple of months in terms of dizziness.

 

Insomnia: I began using melatonin a few weeks ago; low-dosage, I started at 300 mcg, up to 600 mcg.  It does seem to help a bit; I’ve been able to get at least 3-4 hours of fairly uninterrupted sleep at least a few nights a week.

 

Vitamin therapy: a couple of months ago, I believed this to be all COVID or COVID vaccine-related; on the advice of my massage therapist, and buoyed by a message board that I found of people experiencing similar symptoms after COVID infection or vaccination, I went on a vitamin-therapy kick.  I have stopped most of those vitamins in the last couple of weeks after reading the advice here.  I will include the vitamins in my signature soon.

 

I’ve also tried Zyrtec after the “probably Meniere’s disease” diagnosis, but it did not help.

 

CLOSING

 

It's been such a challenging 10 months, physically, mentally, spiritually, that I feel somehow fundamentally and irreversibly broken. I no longer have any sense of self-evaluation. I live in constant fear of another vertigo attack.  I mostly don't go to work, and if you ask me why on any given day, I'm not sure that I can answer whether it's due to depression or physical issues. Everything seems to have melted together into one mind body disaster.

 

My best hypothesis is that my nervous system is screwed from the antidepressant withdrawal, perhaps exacerbated by last spring’s COVID infection and December’s booster shot…. And maybe now by a tick-borne illness???

 

So, fellow sufferers: is fluoxetine withdrawal likely to be the culprit, given my symptoms and other possible explanations?  Considering that fluoxetine is the easiest drug to taper, could the mere length of time I've been on various antidepressants (20 years) and skipping doses (even at low dosages) really be enough to cause my withdrawal symptoms? Or am I going down the wrong path here?

 

All opinions and input are very much welcome.

 

 

 

 

 

 

Edited July 13, 2023 by manymoretodays
name to topic title

[JimB73]

Any moderators able to look at this yet?

[Onmyway]

Hi @JimB73

I haven't had a chance to read the detailed version (I have very little time to respond waiting for a chest xray) but seems like you may have all of the above - Covid sequelae, withdrawal and the tick bourne disease. Take the antibiotic - if you don’t really trust the test have them repeat it but if it comes back positive take the antibiotics. Some of your symptoms might go away even if others remain. This disease is no joke and can attack your nervous system.

 

Reinstatement is risky after this long - things can get worse and you would be creating more chaos in your brain. And let's first see what the antibiotics say.

 

But take the antibiotics. Not all antibiotics cause issues - I've taken multiple during withdrawal and only had issues with ciprofloxacin. You can search for other people's experiences on the forums if you want more reassurance. 

 

OMW

Edited July 17, 2023 by Onmyway

[JimB73]

Hi Onmyway,

 

Thanks so much for responding... I am likely going to take the antibiotics, but the doctor wants me to get the ok from a therapist first, since he says the doxy is very bad for those with severe depression.

[Onmyway]

41 minutes ago, JimB73 said:

Hi Onmyway,

 

Thanks so much for responding... I am likely going to take the antibiotics, but the doctor wants me to get the ok from a therapist first, since he says the doxy is very bad for those with severe depression.

I  personally haven't had any issues with it but that doesn't mean that it can't cause MH problems in others. At the same time, such problems are probably very rare given that they are not commonly known - for example in other antibiotics like ciprofloxacin this is well know.

 

  But in either case the tick disease has to be treated or is he suggesting that you just live with it? Why doesn't the doctor, if he is so worried about it, prescribe something more benign. What will the therapist be able to say about a drug - therapists are not trained in the use of drugs. That sounds like a bizarre decision and a waste of your time. The tick borne disease sounds serious from what I am reading. It is your decision of course how to proceed but the decision power being transferred to the therapist is bizarre. 

 

OMW

[JimB73]

I don't trust this doctor so much, he's a bit eccentric and doesn't explain himself very well. Wouldn't answer directly when I asked if the Ehrlichiosis absolutely NEEDED to be treated; said the timeline of likely Ehrlichiosis infection (about 3 months ago he thinks based on type of antibodies present) doesn't line up with onset of symptoms, but still isn't convinced I dont have Lyme. Most puzzling of all to me though, as you said, why would a therapist be in a position to make a determination about meds? And he definitely meant "therapist", not psychiatrist, because he gave me the name of one.

 

There's a lot of conflicting information about Ehrlichiosis online. Some say it's serious, others say that only in its very early acute stage can it be serious, but that there arent generally any chronic complications.

 

I have an appointment with another Infectious Disease doc tomorrow, although he's not a Lyme specialist. The weird doctor is, for whatever that's worth.

[Onmyway]

So he probably tested for IgG antibodies which would mean that you had the infection previously (I'm not sure you can estimate time exactly for that.  

 

I'd wait to see the non eccentric doctor and perhaps redo the test. It's such a rare infection that if the test has even a small error rate,  a false positive is likely. (Bayes Rule of conditional probabilities)

 

[Altostrata]

Hello, @JimB73 As it appears your symptoms might be from a medical illness about which we know almost nothing, if I were you, I'd get a second opinion from an infectious diseases specialist.

 

Please let us know when this is resolved.