Burningup: Horrid Effexor Reinstatement (And Possible Long Covid)

[Burningup]

Hey All. 
 

I’ve lurked before, but as I feel my situation is at an urgent crossroads, I made an account. I hope this doesn’t come across rambling, but this is my story. 
 

I have experienced severe burning skin, insomnia, akathasia, GI issues, terror, anxiety, dread, temperature regulation issues, shortness of breath, heart palpitations, and awful headaches and head pressure, since I reinstated Venlafaxine after previously having tapered off way too quickly, over about a week from 75 to 0. After that first taper things weren’t quite so bad, I had some nasty headaches, but I had been experiencing some headaches and TMJ issues on the medication, which lead me to quit in the first place. The headaches were manageable, I was still able to go to work and function at about 90%, then I caught COVID for the first time and the headaches got much much worse. In a panic, about 3 weeks after initially quitting, I took my Venlafaxine 75mg, smoked some weed (I smoke often) and went to sleep. Upon waking I was on fire. My skin felt like it was burning from head to toe. I went to the hospital, they gave me a half an Oxycodone, told me people have weird symptoms with Covid, and sent me home. The burning persisted, along with a terror and panic that took over me. I couldn’t lay down, I couldn’t keep my legs still, I paced my apartment for a couple weeks until the restlessness passed. But the burning persisted. Appointments with an rheumatologist got be on gabapentin and propranolol to treat my “mystery symptoms, probably fibromyalgia”. I had become convinced by this point, and still am to some degree, that I had developed some severe issues related to long covid. But as the weeks went on, I seemed to progress in pain level and brain function slowly but surely everyday. I crashed back down in severity a couple times, i attributed them to pushing myself too hard in my recovery. Post Exertional Malaise. But as I reassess my situation, maybe it’s the windows and waves of Akathisia. The crashes suck, but each time they haven’t been quite as bad.
 

Here’s where things get tricky. My fork in the road of recovery. I have been working with a long covid doctor in order to figure out and treat my symptoms. Since they all arose during Covid, this is what my family and I have been pursuing. I had mentioned to him that my symptoms always get worse for a little, right after taking Venlafaxine. He said it would be good to get off of it, and I agreed, especially because all my symptoms started when I reinstated. Dropping to 37.5 wasn’t too difficult at first, but 2 weeks on, right as I’m supposed to drop from 37.5 to 0 on the Effexor and stay on just the 10mg Prozac bridge, my akathisia restlessness has returned, and my burning nerve pain level is back up to levels it hasn’t hit in over a month. I am desperate to get off this medicine, I have had a terrible time since I was introduced to this. Today is supposed to be my last dose of 37.5, and everything I’ve read on here tells me I shouldn’t be stopping this high, or this quickly. Perhaps not at all considering how fragile my system seems to be, but I just miss me so much. I’m in a tremendous amount of pain, and have been for months. Jumping off at 37.5 is doctors advice, and the tapering method was prescribed by a psychiatrist, so it is hard to get doctors and my family to see that this is dangerous. One would think removing the drug that started my akathisia in the first place would alleviate it and allow me to heal even better. I’m 25 years old, and have been suffering for months. I just want to be me again, and I’m getting a lot of advice that getting off the Venlafaxine quickly, and ripping off the bandaid once, will be for the best. My Long Covid doctor wants it out of my system, so I can start titrating up on LDN, but I worry about it resetting my to square one, as well as inducing PAWS.

 

As it stands I just took my last dose of Venlafaxine. As always the burning increased directly after I took it. I see my doctor today, and I’m going to discuss my fears of PAWS and further damaging my system, but I’m sure he’ll say “the science doesn’t support that”. 
 

Any advice on how to not send myself into further terror and misery would be greatly appreciated  

[Catwoman73]

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

 

I'm so sorry for your suffering.  I suffer from both long covid and withdrawal (the long covid came first), so when I read your intro, I felt compelled to respond. It can be very difficult to distinguish between the two conditions, as they both severely impact the nervous system- I never know what is causing my symptoms.  The good news is that the treatment is the same either way. 

 

It looks to me like your rapid venlafaxine taper and subsequent reinstatement at a high dose has caught up with you, and developing covid has exacerbated everything.  Here at SA, we recommend tapering by no more than 10% of your current dose, no more often than every four weeks (so, as an example, 10mg-9mg-8.1mg-7.3mg and so on).  This is known as hyperbolic tapering, and is designed to release the receptors in the brain from the drug at a steady rate, allowing the nervous system to reverse all the biochemical and genetic changes that have occurred as a result of it's presence.  Read more about hyperbolic tapering here:

 

Why taper by 10% of my dosage?

 

After a rapid taper that has resulted in acute withdrawal, reinstatement is often very helpful, but it is best done at a very low dose rather than reintroducing a full therapeutic dose.  This is because reintroducing a high dose can result in hypersensitivity and it's more severe cousin, kindling, making you feel a whole lot worse.  I suspect this is what happened to you, after introducing your full dose of venlafaxine.  Read more about proper reinstatement methods and about hypersensitivity here:

 

About Reinstating and Stabilizing to Reduce Withdrawal Symptoms

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

 Hypersensitivity and kindling

 

The symptoms you describe are very typical withdrawal symptoms, with likely some hypersensitivity mixed in.  Yes, they can also be symptoms of long covid, but given the timing of your symptoms, it sounds more like nervous system destabilization from rapid changes in psych drug dosing.  Here is a list of typical withdrawal symptoms for your reference:

 

Daily Checklist of Antidepressant Withdrawal Symptoms (PDF)

 

Typically we would not recommend tapering at all when your nervous system is as destabilized as yours is. Of course, it's always up to you how you proceed from here, butI would certainly not recommend stopping from a dose of 37.5mg- this could  make things worse rather than better. Though given it has taken a while for us mods to get to your post, we may be a bit late on that.  If you are having a hypersensitivity reaction, I would probably be starting a hyperbolic taper, as described above (you may be able to get away with going a bit faster in the case of hypersensitivity/kindling, but the risk for PAWS remains). If your doctor is now open and willing to listen to you about PAWS, I would do what many of us have to do- lie, and say that we want to continue taking it for now.  Then you can taper slower.  Here is some info on tapering venlafaxine specifically:

 

Tips for tapering Venlafaxine

 

As for what you can do to help yourself recover from this, there are a handful of things- most are fairly intuitive.  Eat a balanced, whole foods diet, stay well hydrated, get gentle exercise, and sleep/rest as much as needed.  Avoid using all other neurologically active substances, such as caffeine, nicotine, alcohol and recreational drugs.  Yes, this includes cannabis.  Using these substances while in withdrawal is like pouring gasoline on a fire- it will inevitably make things worse (as you've discovered).  And we recommend avoiding other psychiatric/ neurologically active meds for the same reason- they can make things worse rather than better.  It seems that ship has already sailed in your case, with the gabapentin and propranolol.  These meds also require hyperbolic tapering.  

 

We do recommend tapering only one medication at a time, starting with the most activating of the bunch.  For you, this is likely the Venlafaxine, but only you can decide that for sure.  Read more here on deciding which med to taper first:

 

Taking multiple psych drugs? Which drug to taper first?

Tips for tapering propranolol

Tips for tapering Gabapentin

 

We do recommend two supplements here at SA for withdrawal- magnesium and omega-3 fatty acids.  Do be mindful though, it is very common for those in withdrawal to become hypersensitive to all sorts of things- medications, supplements and even foods!  So if you start a new supplement, even those we recommend, start with a very low dose, and increase slowly over time if you tolerate it.  I would say this is very true of LDN as well- I started too high, and felt positively drunk.  0.5mg was all I could tolerate to start.  I am now up to 2.5mg, and tolerating it fine.  It has helped with my body aches, and I've seen a bit of an improvement with brain fog.  But headaches continue for me, unabated, unfortunately.  

 

As for whether or not you even have long covid- it's hard to say.  This whole thing started with a rapid Venlafaxine taper, and got worse with covid, so I suspect that your real issue lies with a destabilized nervous system.  The good news is that the same things are helpful in both cases.  Everything I recommend about stands.  I would also say that you need to work really hard to learn to calm your nervous system without drugs.  We have many threads on here about this- I will link some below.  I have found that a solid mindfulness practice is helpful on this front, along with guided meditations, yoga Nidra and recordings of nature sounds.  

 

Non-drug techniques to cope with emotional symptoms

 Easing your way into meditation for a stressed-out nervous system

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

Ways to cope with daily anxiety

"Change the channel" - dealing with cognitive symptoms

Dealing With Emotional Spirals

Important topics about symptoms, including sleep problems

 

Regardless of whether or not you have stopped your Venlafaxine or are continuing it, your nervous system is going to need time to stabilize.  There is no magic cure, no quick fix.  Time and patience is the answer.  And no one can tell you how long this will take.  You will notice that you go through days/weeks where you feel good and days/weeks where you feel terrible as you proceed towards stabilization.  This is a normal part of the process that we call the windows and waves pattern of stabilization.  Having windows and waves is a very good sign that healing is occurring.  Read more about windows and waves here:

 

The Windows and Waves Pattern of Stabilization

 

You may benefit from starting a symptom journal to help you identify your windows and waves.  You can use the above list of typical withdrawal symptoms as a template, if you wish.  Rate your symptoms on a scale of 1-10 each day, and watch for periods of improvement (and celebrate them).  Those are your windows.  If you choose to track foods, supplements and activities as well, you may be able to identify that there are certain things that trigger symptoms for you.  This is also very common, and figuring out what those things are can make the journey a bit less unpleasant, as you would know what to avoid.  I am extremely sensitive to coffee (even decaf), chamomile, refined sugar, magnesium (it's supposed to relax you- it gives me brain zaps and insomnia), and intense exercise.  

 

In summary, I'm not sure if you have officially stopped your venlafaxine at this point (apologies for the slow reply- we are volunteers, and struggle most days to keep up with demand around here!), but regardless of whether or not you've stopped or choose to taper slower as we recommend, it's going to take time to stabilize.  There are many things you can do to help yourself along, and keeping a journal is recommended in order to track your progress and identify symptom triggers.  Long covid and withdrawal are both issues with the nervous system, and these recommendations stand regardless of the problem you are facing.  Overall, don't give up hope!  You can and will heal from this, and it can be made easier by following the recommendations on this site.  We're here to help along the way. ❤️‍🩹

 

This is your introduction topic.  Each member gets one intro topic- please post updates and questions here, on this thread.  Do explore the rest of the forum though- there's lots of good info here!  And I would recommend that you read and comment on the intro threads of others.  This is how you build a community here, and given how lonely and difficult this journey can be, it is helpful to have that community of people who really understand helping you along the way.  🤗

 

Sending you healing vibes, and I look forward to following your journey!