CoffeeTennis: my Effexor XR withdrawal story

[CoffeeTennis]

Hi, everyone! I'm Justin and...I need help. I've been experiencing complex physical symptoms since coming off Effexor 37.5mg in June 2021. To make matters worse, I have a preexisting physical problem that got worse when trying to treat the withdrawal symptoms. Things are very tangled now and I'm having trouble.

 

15 years ago, in 2007, I had a bizarre UTI/bladder infection that, upon resolution, caused weird lower urinary tract symptoms (LUTS). This caused anxiety, and after years of resistance, I went on Effexor 75mg in 2010. They worked: I could sleep and function again.

 

• I was on Effexor 75 for about 11 years, with a few short stints off the meds.
• Every time I tried to go off, I experienced sudden and severe sexual dysfunction. Clearly a withdrawal effect.
• I never had any sexual problems before or during my time on Effexor (save for difficulty orgasming on meds).
• In 2020, I finally managed to taper down to 37.5 without experiencing sexual problems.
• In early 2021, I started figuring out how to taper off entirely.
• My psychiatrist suggested we slowly add hours to the interval between Effexor doses.
• I ended up slowly adding hours over 3 1/2 months until I decided I was ready to stop.

 

The result? Sexual dysfunction avoided! The downside? Other bizarre problems that I'm still dealing with now. I finished that taper in June 2021. Here's what happened:

 

My withdrawal data

• Within 36 hours of taking my last dose, I lost all athletic conditioning. I had been a high-level tennis player and runner...and I could no longer run a mile or hit a few balls on court without getting dizzy, seeing stars, and feeling like I was going to black out and die. My feet/body simply would not move.
• I started peeing excessively in the early mornings. Yes, I already had weird lower urinary tract symptoms. These symptoms were new and different.
• These symptoms didn't improve for about 3 months.
• Because I am an idiot (and because I wasn't sleeping well due to the nocturia) I went down a Google rabbit hole and convinced myself that I needed pelvic floor therapy for the urination.
• Pelvic floor PT instantly made my preexisting urinary symptoms worse and the poor sleep I already had got even worse as well.
• I reinstated Effexor 37.5 at this point, hoping for some cure.
• Reinstating helped with 2 things:
  • My athletic conditioning returned within a couple days.
  • The excessive urination while sleeping subsided.
• However, whatever the pelvic therapy did to my preexisting LUTS stuck around, since it was not related to medication. The result? Even though I had reinstated and my mood was better, I still wasn't sleeping.
• I finally tapered off, using the "adding hours" method, and finished in November.

 

The upshot?

• When I finished the taper, the exercise problems returned. They are not nearly as severe this time.
• The nighttime urination returned, as well.
• I now believe this is my autonomic nervous system reacting to medication withdrawal.
• My sleep quality is very poor, exacerbated by things like alcohol (even in moderation).
• All of this is made worse by my preexisting urinary problems.

 

What I know

• I'm experiencing two problems whose symptoms somewhat overlap.
  • Lower urinary tract issues made worse by pelvic therapy--this isn't meds-related, but it's part of my story.
  • What I believe is autonomic dysfunction, causing exercise intolerance, poor sleep, and different urinary problems.
• I appreciate that my tapering has been much quicker than what you recommend. What's weird is that these tapers have been much slower than other tapers in the past, but those tapers didn't cause any of these catastrophic problems (other than sexual dysfunction).

 

The problems

• I'm having trouble taking smart, well-meaning urologists through these complicated problems.
• I recently moved back home to Boston, where wait times for new patients to see GPs or specialists are horribly long (months and months).
• I do not currently have a psychiatrist, since I just moved and it's hard finding someone with any experience in medication withdrawal, let alone someone who's taking new patients these days.

 

Has anyone experienced similar nervous system problems when coming off? Any ideas/input at all? I'm trying to treat the issues that aren't medication-related, but there's clearly something else still going on--these problems kicked in way too soon for it to be just a relapse of my anxiety. If you've made it this far, I appreciate it!

[getofflex]

Hello Justin, and welcome to SA.  We are a volunteer-run community of people who have been or are getting off of psychiatric drugs.  You have come to the right place.  Congratulations for getting off Effexor!  

 

Thanks for giving us your drug history in your signature.  Can you tell us what 3 1/2 months of 2021 you did the final taper from 37.5 mg to 0?  

 

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 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

 

 

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

 

You said "I do not currently have a psychiatrist, since I just moved and it's hard finding someone with any experience in medication withdrawal, let alone someone who's taking new patients these days."  

 

Unfortunately very few psychiatrists know how to properly and safely taper their patients off psych meds.  That is why this site exists.  The vast majority of them will taper off their patients way too fast, and many of them end up in significant withdrawal for a long time.   We at SA suggest tapering 10% per month of the current dose, so that the taper is exponential.  This usually takes many months to years.  However, it is much less painful and difficult and causes minimal to no withdrawal symptoms.  This link explains more about this:  

 

 Why Taper by 10% of my Dosage  

 

If you find another psychiatrist, it is likely that s/he will want to put you back on psych meds.  Please just be aware of that, and be aware of the fact that you have the right to choose what you put in your body, no matter what any doctor tells you to do.  

 

You very well may have autonomic dysfunction, which is caused by the nervous system being dysregulated by getting off the psych meds quickly.  The good news is, this will eventually correct itself without medical intervention, and without drugs.  The best bet is patience, time, and good self care, as described in the links above.  Here is a thread about dysautonomia.  

 

This link goes to the entire thread: 

 

Dysautonomia (Autonomic Dysregulation).

 

In this thread, our site found Altostrata describes what it is, the prognosis (good), causes, treatment, non drug and drug therapies, and other issues about it.  

 

Alto's Take on Dysautonomia

 

Please hang in there, and give this a lot of time, and boatloads of patience.  It will eventually improve and go away, as long as you take proper care of yourself, and be extremely careful about drugs in the future.  

 

 

 

Edited February 22, 2022 by getofflex

[CoffeeTennis]

@getofflex Thanks so much for the response! Unburdening myself does help, believe it or not.

Happy to clarify my timeline for you:

The main 3 1/2-month taper was from February/March (ish) to June (ish) 2021. Immediately upon that taper finishing, the urinary symptoms started along with severe exercise intolerance.

Things got so bad that I reinstated 37.5mg Effexor in early September 2021 but tapered again and finished for good in mid-November 2021. So I've been off the Effexor for roughly 3 months now.

 

My situation is complex because I have a physical (non meds-related) problem that's contributing to my lack of sleep, alongside the withdrawal. I know these are two separate problems, unfortunately. Currently, the plan is to try and treat the physical symptoms as quickly as I'm able...but that could still take months.

 

I'd be curious if anyone reading this has a theory on why the (apparent) dysautonomia may have started with these latest tapers. As I mentioned in my intro post, whenever I tapered in the past it was much shorter (and more unsafe, as I now know) and I never had any issues. In fact, after those quick tapers I always felt my athletic performance improved when off the meds!

 

[getofflex]

thanks for the extra detail on your drug history. If you don't mind, I'll add this to your signature.  

 

20 hours ago, CoffeeTennis said:

I'd be curious if anyone reading this has a theory on why the (apparent) dysautonomia may have started with these latest tapers. As I mentioned in my intro post, whenever I tapered in the past it was much shorter (and more unsafe, as I now know) and I never had any issues.

 

This is very common.  The more we go on, off, and on psych meds, the more it messes with our extremely complex and intricate nervous system.  These links explain it well: 

 

Nervous System Hypersensitivity, Kindling, ect.

 

This second link is long and technical, but it gives you some idea of what these drugs do to our brains.  

 

What is Happening in Your Brain

 

Dysautonomia

[CoffeeTennis]

Thanks, @getofflex! "Long and technical" is my sweetspot, so I'll be giving those links a read.

 

I'll periodically update this thread and let people know how my (suspected) autonomic symptoms are doing. I hope the data may be useful for someone--I had to stumble on dysautonomia completely randomly, whereupon all my symptoms made sense. I hope my history saves someone time and worry!

[CoffeeTennis]

Hey all, I'm writing with an update and a question. I'm now on 20mg Cymbalta to treat severe anxiety and muscle tension related to pelvic floor dysfunction. I'm not thrilled to be on it, but it's likely the only way PFD treatments will work for me. I'm already trying to plan out a safe taper of the Cymbalta once my muscle dysfunction is treated.

 

Here's my question: I know bead-counting is the best way to get off meds like Cymbalta and Effexor. However, historically I've been unable to get the original capsules open without breaking them.

1. Does anybody have any tips for how to open Cymbalta capsules so I can re-use them? I'm an otherwise dextrous human with fine motor skills, but I've never been able to get capsules open.
2. In theory, I could just put the beads in a new empty gel capsule. However, whenever I've done that the meds have hit very differently--no idea why. Putting beads back in the original capsules has worked, but I cannot for the life of me consistently get the capsules open without breaking them.

Does anybody have any tips at all so that I can safely go off the Cymbalta? I wonder if the empty gel caps I've used in the past have been too big or otherwise unsuited to the beads, making them affect me differently. I'd certainly prefer to use the original capsules...if I can get the stupid things open! @getofflex You've been so helpful answering my questions, so I'm hoping you, another mod, or any other poster might have tips on this.

[getofflex]

Hello, I'm currently taking a break from moderating.  Please do a site search on "Cymbalta",  search titles only of the tapering forum, and you will find extensive info on all things related to your question.  

Edited August 20, 2022 by getofflex

[ChessieCat]

On 8/21/2022 at 2:09 AM, CoffeeTennis said:

Does anybody have any tips at all so that I can safely go off the Cymbalta? I wonder if the empty gel caps I've used in the past have been too big or otherwise unsuited to the beads, making them affect me differently. I'd certainly prefer to use the original capsules...if I can get the stupid things open!

 

Please completely and carefully read Post #1 of this topic:

 

tips-for-tapering-off-duloxetine-cymbalta

 

[CoffeeTennis]

3 hours ago, ChessieCat said:

 

Please completely and carefully read Post #1 of this topic:

 

tips-for-tapering-off-duloxetine-cymbalta

 

Thanks; that post only indirectly answers my questions. I.e., I'm gathering from the allusion you make in the other thread that the medication is dissolving somewhere it shouldn't. Of course, your allusive post doesn't help me figure out what to do about either of the issues I'm facing. And in fact, post #1 suggests putting loose beads in an empty gelatin capsule, something I've succinctly stated has not worked for me. Would have been quicker had you read that.

 

I'll seek more information elsewhere rather than engage this forum further.

[methuselah]

Hey @CoffeeTennis  don’t take it personally, I think the available mods are pretty bogged down.  Any ideas on timeframe/when you will start  tapering?   Maybe when you decide to taper you can come back and folks will have more bandwidth… 
 

Just spitballing your issue here, have you tried a different manufacturer or different dose from the same manufacturer,  maybe those caps will be easier to open and reuse?  Of course, many folks including myself have issues with other manufacturers so that may be a roadblock to this option.

 

the link chessie provided has quite a bit of info in there for cymbalta tapering.  Also prob worth searching through threads of folks that are tapering cymbalta, may find an answer there.  Unfortunately this process is wrought with trial and error so there will be hiccups when dialing things in.