As I wrote last week, I’ve been trying again to wean myself off the Effexor (generic name: venlafaxine). I’m down from my very high dose of 300 mg last fall and winter to 75 mg since July, and both Tabitha and I thought it was time for me to get off it completely–not so much because I am depression-free, but because I have so many side-effects from this medication.

Last Thursday (10 days ago now), I started removing just three beads from one of the two 37.5 mg capsules I take each day. Three beads is probably fairly close to 3 mg, since I tend to count 36-40 beads in a capsule. That’s a 4 percent reduction in my current dose, so it definitely qualifies as weaning off slowly. Or so I thought.

Thursday I feel fine. Friday morning I make it to yoga class, but then I feel my energy decline during the day, and that night I start having the oddly vivid dreams with extra color and complications that I associate with forgetting a dose. These dreams aren’t exactly nightmares, but they are weird and unsettling; my sleep is restless, and my brain is racing. By Saturday morning, I’m exhausted, depleted, and unmotivated. I can’t get up; it’s just too hard. I don’t do much of anything. Sunday is the same, but a bit worse, with my skin tingling with little electric impulses that make me want to jump out of my skin. And I notice the negative thoughts creeping in again: You are nothing, Q. You have no reason to exist. 

No, wait, stop! I have learned a lot in therapy, and one of the most important things I have learned is to be kind to myself. I can recognize that the thoughts are drug-induced. I can give myself permission to take it easy for a few days, if that’s what my body needs.

But even as I think that, I also doubt myself. I think: Maybe I am fussing too much. Perhaps I am over-sensitive. I have too much time on my hands and just use it to focus too much on every little thing. When I have no energy and don’t make it out of bed and go to yoga class on Sunday or Monday, I scold myself for being lazy and self-indulgent.

During yesterday morning’s version of can’t-get-out-of-bed (to the tune of “Why are you so ineffective? You told your husband you’d make him a nice breakfast, and yet you’ve been lying here for hours, while he’s up and probably hungry… I don’t know why he puts up with you!”), I started Googling my feelings, as I often do after I’ve read the New York Times online, checked my email, scanned Instagram and still don’t have it in me to do more than look at my cell phone. This time I type in “effexor withdrawal suicidal thoughts.”

Well, oh my gosh, there’s a lot there to read, it turns out. Because I have this blog and read other people’s blogs, I don’t routinely tend to explore the many versions of a mental health forum that exist out there. But I come to find out that the perils of Effexor withdrawal have been widely discussed there.

Let me give you just a few examples I picked out, mostly because they echo elements of my own experience (parallels noted by bold font).

Hi there, I’ve just joined on here to get some advice and support. I was prescribed venlafaxine xl (modified release) 10 yrs ago for severe depression after my daughter was born. Over the years this has been increased to 225mg/day. My partner and I want to have another baby and became aware of the effects venlafaxine could have on a unborn child. So I went to my psychiatrists to ask for help to come off it.  They drew up a plan where I would gradually reduce my amount by 37.5mg/week. This was 6 weeks or so ago, and I am now on day two of no venlafaxine whatsoever. But I’m suffering really bad withdrawal symptoms: excruciating headaches, shaking and shivering, and nausea. This evening I had a major breakdown and couldn’t stop crying. I had to be prescribed diazepam! I feel worse as each day goes by and don’t think I can do this for much longer if this carries on. I really want to get off this drug, but I don’t know how long the withdrawal will last and when I’ll start to feel better. Does anyone have any ideas??

I feel like I’m in living hell at the moment…I have been feeling so bad that I’ve been housebound now since I started this regimen. I just need to know when it’s going to end.

Posted on a forum by TG in 2011

And a response from Barnsley Phil in 2015 to TG on the same site, (where, by the way, there are many, many other stories about withdrawal difficulties):

I registered on this site just to reply to you because I feel for you. God bless you 😦

I’m on 150mg of venlafaxine [Effexor]. If I miss a dose by half a day the headaches start. Within a couple of hours [I have] those horrible ‘brain zaps.’ The anxiety, nausea and stomach cramps come on after that. Then I start getting cold sweats and feverish. If – for any reason – I go to bed like that, nightmares. Vivid horrible nightmares. If there is anything that feels more like losing your mind – I do not want to go there.

If I’m taking it – things seem OK. Bit dizzy, bit of vertigo – on a bad day, from time to time.

This weekend I got sick with a flu like virus. I forgot to take my venlafaxine for 24 hours (hence me revisiting the advice around withdrawal) – today has been horrible. Can’t think straight. Just want to get back straight with the dose. It is very scary.

I totally empathise with you. Totally. You can do it. It’s horrible – I know it is – but hang in there. You can do it.

On a different forum, buried somewhat down the page after a lot of comments, mammaP wrote on February 24, 2015:

Your story is very much like my own with Effexor. I too was suffering what they called MDD, an unremitting depressive episode of bi-polar. I started Effexor but took it for 5 years at 75mg, before I cut to 37.5 because of the side effects.  Fast forward another 5 years and I was really ill, housebound and bedridden at times. No energy, absolute and utter fatigue that meant I couldn’t even take a shower without collapsing into bed after.  I had gallstones after the years on it, high cholesterol and high blood pressure. Pain in all my joints, I have arthritis too but this was even worse. Muscle pain and weakness, it hurt even to touch my skin on my arms. Scratching an itch was so painful it felt like I was using a knife to scratch it with. My memory had gone and I couldn’t remember basic things, constantly looking for my glasses when I had them on, looking for the phone while I was texting or even during a call I would look for the phone! 

…I could go on and on, the doctors thought I might be suffering early onset Alzheimer’s, but scans showed clear, and I was told it was my depression over and over again.  I had reacted to every drug they had given me and said they couldn’t increase the Effexor because of the side effects I had earlier (mania, headaches etc. ).

Then one day I put my drugs into drugs.com and discovered the side effects, all of which I had in spades. I decided then and there that I was getting off them.  Over the years I had tried  cold turkey, but that didn’t last more than a few days because the brain zaps were EXCRUCIATING! Then I asked the doctor for a taper plan, It was far far too fast, as they all are. I had withdrawal and felt very depressed again, so went back. The doctor said I needed it for life.

…I  did some research and started to taper more slowly, I thought I was going very slow but it was still too fast, and I had withdrawal after  a few weeks of thinking I was fine. I was depressed and thought that maybe I DID need them for life like the doctors said. I was suicidal because I couldn’t live with them and it seemed couldn’t live without them either.  I couldn’t go back to either state. I was bed ridden (and depressed ) on and I was depressed and severely agitated off.  

… I know you never want to take that poison again, and believe me every time I pop that little bead in my mouth I am angry at the doctors and hate taking it, but I will continue until my nervous system has recovered enough to let it go. [Being told to have] faith is good–I have a very strong faith–but that doesn’t stop the physiological withdrawal symptoms of a destabilised nervous system… 

Or here’s a particularly painful post to read, from Susan F. in September of this year:

I’ve been on venlafaxine for several years now. I’ve tried unsuccessfully to get off of this drug about three times since I began to take it. It has ruined my life. I have no pleasure in anything. I am constantly thinking about suicide in the last few months. It’s getting worse and worse. Today I began checking all my meds to see if any would be a fatal dose. I’m so done I don’t want to live.

I want to be clear–not everyone has this extreme an experience with coming off Effexor. And by no means am I making an argument that “all antidepressants are bad.” I think what I am saying is

• many, many people seem to struggle getting off this medication,
• including serious and lasting suicidal thoughts, and
• many professionals seem to underestimate how hard it is or how long it can take to get off it, so
• I wish I never took it in the first place and
• I have to wonder whether there aren’t better medication choices for most people.

My husband tells me he feels angry at the previous psychiatric nurse who first prescribed this medication for me and who then, when I said I wasn’t doing well, kept increasing the dose again and again, until I barely able to get out of bed. I don’t know, maybe I’m a bit aggravated with her. I do feel she wasn’t listening to me when I said that I didn’t think Effexor was the right thing for me. But on the other hand, she was working off the information she had from pharmaceutical companies and psychiatric research, right? Although, I don’t know… drugs.com says the maximum dose for outpatients is 225 mg. She gave me more than that. But then, how much can I trust that website? After all, it also says that to discontinue, patients can decrease their dose by 75 mg/week, which is clearly not correct for vast numbers of people.

How are we supposed to be informed consumers of these medications?!?

After consultation with Tabitha and some initial resistance on my part, I gave up on this current effort to reduce my dose. Today I took the full dose again. I’m still tingling, but my energy is a little better, and I’ve stopped having the negative, self-destructive thoughts. That’s a relief. Perhaps I’ll make it back to yoga in the next few days. But at the same time, I also feel disappointed, because for now, I have to take this toxic garbage, just to keep on functioning. Tabitha tells me not to worry, that we’ll try again later. But I’m afraid I’ll be stuck with this poison forever.