Fury21: coping with Effexor tolerance withdrawal

[Fury21]

Hi, this is my first post - I'm 6 weeks off Efexor and the withdrawal is brutal.

 

I was prescribed 75mg of Efexor in July 2020 by an endocrinologist who suspected depression, and I began to experience what I now know to be tolerance withdrawal in October/November 2020, and it was incredibly severe. I experienced the following symptoms:

• severe headaches (myriad and varied types) every day
• brain fog
• fatigue
• light and sound sensitivity
• eye pain when looking at light
• muscle weakness
• heart palpitations
• joint pain
• itching
• tinnitus
• insomnia
• jaw pain
• poor memory
• hallucinations

 

These symptoms plagued me and escalated over 16-ish months. No migraine medications worked and every test and scan under the sun came back with no leads. I had to stop work due to the pain and brain fog.

 

I came off the drug myself after a bout of corticosteroids (prednisone) was miraculously effective, and pointed towards neurogenic inflammation as the cause of my issues. I became suspicious that this was Efexor's doing. In desperation I "tapered" way too fast and went down from 75 to 37.5 for one week, before coming off it entirely.

 

The acute withdrawal in the first two weeks was awful. I was suicidal, had excruciating headaches, brain zaps, immense fatigue and insomnia, colossal mood swings including a hypomanic episode, anger, irritability, fear, severe nausea and severe full-body itching that made sleeping almost impossible. However, a huge majority of the tolerance withdrawal symptoms of the prior 16 months stopped as soon as I came off the drug. The muscle weakness, tinnitus, jaw pain, photophobia, heart palpitations, sensitivity to sound, and hallucinations all stopped immediately. After the first two weeks, things got a lot better, and I could go outside and walk again for the first time in a long time, and though I still battled the headaches, nausea, itching, brain fog, and fatigue, it was more manageable than it had ever been.

 

I got a vaccination 4 weeks ago and for whatever reason, I think it interacted badly with my withdrawal. My symptoms immediately got much worse and are yet to improve - I haven't had that kind of 'window' since. The fatigue and brain fog are the worst of them, those are the symptoms that keep me debilitated, but the mood issues are making it difficult to cope.

 

One of the hardest parts of this is that Efexor worked perfectly for what it was intended to regulate. I felt the happiest and most stable I have in my life, with my depression (potential cyclothymia) completely stabilised and my mood incredibly under control. However, the cost of being utterly debilitated and in pain all the time was obviously too high - I have lost my mid-20s to this.

 

I haven't been tempted to get back on Efexor, for obvious reasons. I don't really have any idea of when this is meant to get better. I really didn't want to be unmedicated for my mood issues and they are just as difficult to deal with during all of this pain and debilitation as I expected they would be. In fact, some of them feel new and withdrawal-caused, and I'm hoping this crucible of an experience hasn't made the underlying condition worse.

 

I've had many a psychologist for anxiety and depression over my life, and I practice CBT and mindfulness every day, as well as living as healthy a lifestyle as I can while being largely unable to do much. I see a physio, I do the exercises, I eat all the food groups and plenty of vegetables, I walk outside at least once a day, I have a psychiatrist and psychologist lined up, as well as specialists to check whether this has done any further damage to me. It just feels incredibly brutal when none of this stuff actually seems to help. I live a healthier life now in this 'wave' than I did when I was experiencing the 'window', and yet it doesn't seem to make the wave shorter or the window come sooner. It doesn't even lessen the symptoms.

 

This website has been very helpful to me, as has Recovery and Renewal by Baylissa Frederick (I know others on the site have found her writing helpful), and so I thought I would post in case others have been through similar - I'd really appreciate hearing about it if you have.

 

Thanks,

Alice

 

 

 

[getofflex]

Hello, 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.  

 

From what you describe, it sounds as though you were having significant adverse effects from the drug.  No wonder you got off of it so quickly.  Only now, you have withdrawal symptoms, because your nervous system became dependent upon the drug.  Rest assured that your system will eventually adjust, and you will overcome the withdrawal symptoms.  

 

Can you please give us specific information about your drug history for all drugs you are on and have been on, especially for the past 18-24 months?  It would be especially helpful to have the details of your drugs in a concise vertical list (no symptoms), only drug names, specific dates (as best you can say for example early March if you don't recall the day) and dosages of each medication decrease or increase.  Use this format:

 

Drug name: date, dose, date, dose, date, dose…

Drug name: date, dose, date, dose, date, dose…

Etcetera

 

Please read the link below for instructions.  This will allow us to give you the best guidance.  

 

How to List Drug History in Signature

 

Here is some information about how these drugs actually work.   This explains why we get symptoms from going off of these medications.  

 

How Psychiatric Drugs Remodel Your Brain

 

 

This helps you understand what withdrawal syndrome is: 

 

Video on Recovery from Psych Drugs

 

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

 

 

Here is some information about how long withdrawal may take.  In it, there is a section on what to expect if you had an adverse reaction to the drug.  

 

How Long Withdrawal May Take

 

 

There is a lot to learn and take in.  The keys to overcoming this are time, and patience, and persistence.  The brain has amazing healing abilities, but the nervous system is highly complex, so this can take a long time.  Also, healing tends to happen in fits and starts - we call this windows and waves:  

 

Windows and Waves Pattern of Stabilization

 

Please let us know how you are doing.  

Edited February 21, 2022 by getofflex

[Fury21]

Thank you for the welcome and reassurance, it's hard to believe on your own that the situation is only temporary. These links are really helpful, thank you!

 

Here is my specific drug history:

Circadin mid 2016 onwards

Brenda 35mg early 2014 onwards

Efexor XR 75mg mid July 2020 to late December 2021

Magnesium Aspartate 500mg mid May 2021 to late September 2021

Riboflavin 200mg mid May 2021 to late September 2021

One-off botox migraine treatment August 2021

Prednisone (low dose, specifics unknown) 12-15 December 2021

Diamox 12-27 December 2021

Efexor XR 37.5mg December 28 2021 to 4 January 2022

Aspirin as needed

Ibuprofen as needed

 

The myriad things my doctors used to treat what they thought were migraines over 2021 had absolutely no impact (triptans, tri-component ergotamine, antihistamine nasal sprays). Except, however, the one-off botox treatment in August 2021 which made everything much much worse. It was immediately after that that I started getting periodic hallucinations, nausea, and vomiting, and the daily brainfog & fatigue became so bad I had to stop work. The daily pain in my head also escalated dramatically.

 

I had post-infection fatigue syndrome after being hospitalised with a virus and infection in 2018. I lost 18 months to recovery, becoming myself again in February 2020, just in time for the pandemic to hit and to be locked in my bedroom again. Mood issues became very significant and unbearable, hence being prescribed efexor in July 2020. I began dealing with this tolerance withdrawal/adverse reaction in November 2020.

 

So I haven't really left my bedroom since mid-2018. While this means I am well acquainted the idea of long-term non-linear recovery, it also means I've been largely unable to participate in reality, against my will and through no fault of my own, since I was 20. It's tough to consider it might be another year or two or five. The lack of timeframe is killer, and it's hard to know how to cope with it. I appreciate the resources here that you've linked, hopefully it will make this disaster more bearable.

 

[getofflex]

We at SA generally don't encourage the use of supplements other than magnesium, and omega-3 supplements.  This is because when we are withdrawing from psych meds, our nervous systems tend to be very sensitive, and many supplements or other drugs can put us at risk of our withdrawal symptoms worsening.  For example, I looked up Effexor and Diamox on www.drugs.com interaction checker, and these two together can cause "nausea, vomiting, headache, lethargy, irritability, difficulty concentrating, memory impairment, confusion, muscle spasm, weakness or unsteadiness,"   Please go to https://www.drugs.com./drug_interactions.html and see if your other drugs and supplements have bad interactions, and if the symptoms correspond to your symptoms.  

15 hours ago, Fury21 said:

Except, however, the one-off botox treatment in August 2021 which made everything much much worse. It was immediately after that that I started getting periodic hallucinations, nausea, and vomiting, and the daily brainfog & fatigue became so bad I had to stop work. The daily pain in my head also escalated dramatically.

 

I'm sorry to hear this about the botox treatment.  My own philosophy is to be extremely careful about what drugs and supplements I put in my body while I am tapering off of my own drug.  

 

The pandemic has certainly taken a toll on the mental health of many.  I'm sorry that you have been so confined to your bedroom for the past several years.  

 

I see you are on hormone treatment (Brenda).  Here is a thread about the experiences of other members of the forum with estrogen and progesterone.  

 

Estrogen and Progesterone

 

 

[Fury21]

I was prescribed diamox for suspected high intracranial pressure in hospital by a neurologist, and was on it for 15 days at month 13 of my symptoms, and there was no change. Magnesium and Riboflavin were also migraine treatment attempts that had no effect on my existing symptoms.

 

I was on Brenda and Circadin at the time I started Effexor XR and had been for years. There is some interaction between Circadin and Effexor XR, but I did not have any dizziness amongst my symptoms, and I took them both together with no brain fog or fatigue or any symptoms at all for 4 months.

 

Does anyone here have experience with a short course of corticosteroids massively reducing tolerance withdrawal symptoms for the duration of the course? My only theory is that it reduced neurogenic inflammation, maybe taking some pressure off the nervous system. It isn't any kind of solution given there's a whole separate basket of issues for long-term corticosteroid usage, but I am curious as to why my condition improved so dramatically while on prednisone.

[Bee5]

Re your corticosteroid question: corticosteroids worsen all of my symptoms drastically and quickly. I avoid them at all costs.

[Fury21]

By way of update, I was instructed to do cytochrome p450 pharmacogenomic testing to see if I had genetic issues metabolising certain drugs. Lo and behold, I have major issues with metabolising venlafaxine due to a slow metaboliser gene (CYP2D6). The slow metabolisation of venlafaxine into desvenlafaxine-O in my body means that my system is exposed to venlafaxine for far too long.

 

Regarding the steroid efficacy, my diagnosis of depression was recently changed to bipolar II, a disorder heavily associated with inflammation. I predict this is why the steroids help me so significantly.

[rmce72a]

Hello Fury. I am so sorry you are suffering and send healing thoughts your way. I was prescribed Effexor XR 75mg 22 years ago for fibromyalgia. I did not realize I was taking a heavy-duty AD. I have just continued to take it out of habits mostly.  I started a slow taper 6 weeks ago by counting beads. Three years ago, I began having anxiety and depression symptoms and my new PCP said I should increase the Effexor. I told him I was not taking it for depression/anxiety and wanted off. Anyway, the point I want to share is that I, too, had a gene test which shows that I am an ultrafast metabolizer which means I supposedly will have much more severe WD for reasons I don't understand. Anyway, I conclude in view of your gene test that we are all in for tough withdrawal regardless of our metabolism. Logically, I would think that as a fast metabolizer, I should have less trouble not more, but according to the NIH, that is not the case. Good luck.