salamibrood: withdrawal desvenlafaxine and venlafaxine

[salamibrood]

Hello good people of SA,

 

Thanks for sharing your experience here, it's been a lifesaver to know I'm not alone, and what I'm feeling is real.

 

To get straight to the point, I need your help in finding psychiatrists that are sympathetic to real withdrawal in France. I understand that the UK and Netherlands might have updated their official guidelines regarding tapering, but I've had no luck searching in France, besides trying out doctors one at a time. Even one willing to write a prescription so that I can get myself tapering strips from  https://www.cinderella-tx.org/en/ would be great.

 

Some background to how this all started: in 2016, due to personal and work related issues, my anxiety and depression seemed like it couldn't be fixed with talk therapy alone. I was desperate, and after struggling with these issues since I was 20, I finally visited a psy at the age of 28. My drug history is below, along with the effect on me when I was taking it normally, and during tapering periods.

 

Vilazodone (Viibryd) - 1 month (Dec 2016) - PSY #01 (home country) 

I was told that this was a mild drug, but since it made no difference at all to my symptoms, this was discontinued, and I was put on the next one...

Escitalopram 20mg - Jan 2017 - Aug 2017:  PSY #01 (home country) along with Clonazepam 0.25mg as SOS only (usage is 1-2 times a year when in severe anxiety/almost panicking)

@20mg: persistent drowsiness for 6+ months, sexual dysfunction, marked increased appetite, weight increase of about 8kg (16lbs) in a year, no more than 20% improvement in depressive and anxious symptoms, inability to fully feel pleasure or strong emotions, even though my depressive/anxious cycles came and went in the same frequency as before getting on the drug

Stopped cold turkey end-Aug 2017 because I was too depressed to make an appointment and renew my prescription - brain zaps and headaches for about a week, persistent low-moderate baseline anxiety that persists to this day 
 

Escitalopram 20mg - Oct 2017 - Aug 2018 : PSY #02 (home country) reinstated original 20mg dose

@20mg: withdrawal symptoms mostly disappeared IIRC, all other effects same as previous phase. 

In May 2018, my psy decides that I've been on SSRIs long enough, and that I'm too young and healthy to be depressed. I don't protest, because I don't see the drugs working either. 

Tapering: 3 month taper to stop (only because I convinced my psy that I may be  very sensitive to withdrawal, else it would have been a month), no brain zaps this time, but constant higher baseline anxiety  that persists to this day, leading to more frequent crippling anxiety spirals to this day, something which I've never had prior to taking this drug)

 

All of the weight I gained on this drug I lost over 6 months, partly due to a stressful work situation in Jan-Feb 2019, which made my already higher baseline anxiety go into overdrive, which leads me to the next drug...

 

Desvenlafaxine 50mg - Mar 2019 - present: PSY #03 (home country) originally prescribed for a max of one year, along with Clonazepam 0.25mg for the first two weeks to deal with potential higher anxiety due to the SNRI impact on norepinephrine, I took just ~0.125mg because 0.25mg seemed too much and was making me too relaxed. 

@50mg: less sleepiness/fatigue, weight gain 7kg (14lbs) in about a year, higher resting heart rate (65bpm vs 55bpm drug free), but no improvement in ability to concentrate or motivate myself - even though I wanted to stop the drug after 3-4 months (I had moved to France by then), it took me about a year to finally make a psy appointment, and that too because lockdowns made it easy to do a teleconsult (making and attending a physical appointment was impossible)

Tapering: Psychiatrist (PSY #04 , France) prescribed going from the initial 50mg Desvenlafaxine to 37.5 Venlafaxine to 25mg Desvenlafaxine to zero, stepping down every two weeks.

This has been a nightmare, rivalled only by the psychological issues that led me to drugs in the first place: brain zaps for 3-4 days after the reduction, especially while falling asleep or standing calmly for a long while, moderate to high anxiety throughout the day, F&F response/pit in my stomach/sinking feeling easily triggered with mundane events 10-20 times per day, and also constant chest pain, palpitations, dry mouth, sleep deprivation, very high irritability directed towards nearly everything, and mild vertigo. None of these are part of my physical or psychological profile, even to a mild degree, so I'd strongly suspect withdrawal because they go away the moment I decide to step back up on the drug.  

With these difficulties, I had to instead stretch each step to 3 weeks, and do a 50 - 37.5 - 25 -12.5 - 6.25 - zero to make it "tolerable".

Only the 37.5mg step was done with Venlafaxine (capsule with tiny beads), the rest were done with somewhat badly cut up Desvenlafaxine 50mg tablets.

Even then, two weeks after going to zero, almost our of the blue, I suddenly had some of the worst anxiety I've had in my life (mental+physical, as above), and had to go back to ~6.25mg and stay at this level from mid-August to mid-October 2020, with higher than usual withdrawal effects in August.

Finally, I gathered the motivation to have a session with my psychiatrist at the beginning of September, where he said I should stop the 6.25mg immediately, and "tolerate the effects for a week" because "withdrawal doesn't last so long". He also said that any issues is itself caused by taking the drug in small quantities, any issues after one week should be addressed by another doctor and not a psychiatrist (as if). I tried to bring up the fact that I have 2 other friends with similar stories, and that I struggled with escitalopram withdrawal, but he simply said that venlafaxine shouldn't have as bad an effect as my former drug, that the information on the internet is useless, and that he has 10 years of psychiatry experience. The session lasted 25mins and I was asked to leave to make time for other patients. Needless to say I wasn't going to make much progress barking up that tree.

After being on ~6.25mg in August and Sept, I've reduced my dosage by about 10% since beginning October by counting beads. I still have withdrawal symptoms that range from 30-50% of the worst levels, so perhaps I should jump back up a few steps and taper back down from there. The problem is, at my current dose, I will have run out of my capsules with beads in about two weeks, and might have to jump back up to ~6.25mg, from a tiny 50mg pill cut up into 8-ish parts, with no way to taper back down any more. 

 

I have an appointment with a new psy by the end of the month, where I'll try to make my case to either extend my prescription, or switch me to a less hellish drug. But if it doesn't work out, I'm very afraid that I simply won't be functional in case I run into a moderately-sized life problem. 

 

Sorry for rambling on during that last bit -- I'd be happy to clarify anything at all, please let me know.

 

Again, thank you.

 

Cheers,

SalamiBrood

 

Edited November 8, 2020 by ChessieCat
added Viibryd / bolded venlafaxine and desven for easier distinction

[ChessieCat]

Hi salamibrood and welcome to SA,

 

Unfortunately you've been tapering too quickly and the doctor was very foolish with his changing the drugs.  Not the drug itself but the dosage.  I will explain below.

 

Q:  When did you start tapering the desvenlafaxine?

 

I'm taking Pristiq (desvenlafaxine) so I understand how difficult it is to get the doses.  I've been getting my dose compounded and it has been working successfully.  I've just recently started taking part of my dose using a capsule's contents mixed in water and it seems to working well.  There are links in my drug signature to my Intro topic for more information.  I've also posted in the Tips for tapering off desvenlafaxine (Pristiq)

 

42 minutes ago, salamibrood said:

Tapering: Psychiatrist (PSY #04 , France) prescribed going from the initial 50mg Desvenlafaxine to 37.5 Venlafaxine to 25mg Desvenlafaxine to zero, stepping down every two weeks.

 

The dose of desvenlafaxine is NOT equivalent to venlafaxine.  Some think that the ratio is about 1:2, or 50mg desvenlafaxine = 100mg venlaxine.  It is not known what the exact equivalency is.  However I will use the 1:2 ratio as a guideline for ease of explaining your situation.

 

You were taking 50mg desvenlafaxine (= ~100mg venlafaxine)

 

You then took 37.5mg venlafaxine (= ~18.75mg desvenlafaxine)

 

This was a ~62.5% decrease

 

You then took 25mg desvenlafaxine (= ~ 50mg venlafaxine)

 

~= 33.3333% increase

 

SA recommends tapering by no more than 10% of the current dose followed by hold of about 4 weeks to allow the brain to adapt to not getting as much of the drug.  When we remove the drug too quickly we can experience withdrawal symptoms.

 

Why taper by 10% of my dosage?

 

Dr Joseph Glenmullen's Withdrawal Symptoms

 

52 minutes ago, salamibrood said:

With these difficulties, I had to instead stretch each step to 3 weeks, and do a 50 - 37.5 - 25 -12.5 - 6.25 - zero to make it "tolerable".

Only the 37.5mg step was done with Venlafaxine (capsule with tiny beads), the rest were done with somewhat badly cut up Desvenlafaxine 50mg tablets.

 

These reductions have been much to large.  And jumping off at 6.25mg desvenlafaxine is too high.  I plan to go down to at least 0.0625mg before I jump and possibly lower.

 

1 hour ago, salamibrood said:

He also said that any issues is itself caused by taking the drug in small quantities

 

This is absolute rubbish.

 

1 hour ago, salamibrood said:

he has 10 years of psychiatry experience.

 

But not tapering experience, which is very obvious from his lack of knowledge about desvenlafaxine and venlafaxine (assuming same person) and this information is readily available with a quick internet search.  Psychiatry knowledge and psychiatric drug knowledge are two completely different things.

 

1 hour ago, salamibrood said:

After being on ~6.25mg in August and Sept, I've reduced my dosage by about 10% since beginning October by counting beads.

 

Q:  Did you go back on venlafaxine?

 

1 hour ago, salamibrood said:

I still have withdrawal symptoms that range from 30-50% of the worst levels, so perhaps I should jump back up a few steps and taper back down from there.

 

It sounds like you need to increase your dose (we can make a suggestion once we have more clarification on your drug/s) and do a very long hold, at least 3 months, possibly longer.

 

What we need now is a simplification of your recent withdrawal, a list of drug name, date and the approximate dose.  If you can provide the last 6 months that would be really helpful please.

 

Q:  Are you taking any other drugs/supplements?  If yes, please add those below the taper list.  If have been taking a benzo please provide the name, dose and the dates you have taken it for at least the last 3 months.

 

Q:  What are your current symptoms?  How is your sleep?

 

This is your own Introduction topic which is the best place to ask questions about your own situation and journal your progress.

 

 

 

 

[salamibrood]

Thanks ChessieCat, for responding so quickly, and for making my post more readable 

 

I agree, reading through the forums, the 10% taper and hold method is the safest I've seen, and it's what I'd like to follow. (I do feel quite let down by my psy's assertion that venlafaxine and desvenlafaxine have the same potency, and didn't have a reason to challenge him, but after months of withdrawal, I kinda also feel I should have done enough research myself. In any case, thanks for bringing this to my attention! Looks like I've been taking my CNS on a rollercoaster ride)

 

Regarding my withdrawal, the symptoms I have are: 

• brain zaps: strong ones 2-4 days after every step down, and after that mild ones while falling asleep
• some physical anxious symptoms when I wake up in the morning (like moderate chest pain) for about 1-2 hours. This is generally worse the first 3-4 days after the step down. Very mild chest pain throughout the day, and this has been decreasing over the past 2 months.
• migraines I used to have 1-2 times a month have increased to 1-2 times a week if I step outdoors everyday for more than 15-30 mins (I take a drug for this, but try to work from home and limit going outdoors so that I don't depend too much on it, details below)
• mild hangovers even if I've only had 1-2 drinks, that seem to last for 1-2 days (so I've started limiting myself to about one drink a month, and avoid red wine and beer) 
• higher baseline anxiety throughout the day (general and social) that makes me more prone to moderate anxious/avoidance/depressive episodes if I have a setback. Even good stress at work tends to have the same effect on my anxiety as bad stress, so it's hard to keep a good working streak going. 
• stronger anxious physical responses to even mundane things (imagine remembering "oh I forgot to turn off the kitchen light", but having a sudden dull pain in your chest/stomach that you'd only normally have for a "SH*T! I left something burning on my stove and I'm an hour away from home") - this is probably the worst symptom, and the hardest to get used to. After 2-3 days of a step down, it happens 10-20 times a day, but since the past 1 month it's gotten less pronounced and less frequent (5-10 times per day)
• Dry mouth and palpitations: more frequent in the first 2 months, but not noticeable in the past 2-3 months
• Irritability: much, much higher than usual during the first 2 months of tapering, especially in the first week of stepping down the dose. 
• Sleep: moderately worse. While on the drug, I could quite easily sleep 8 hours a day in normal situations, and 4-6 hours a day when stressed or anxious (~33% of the time). While tapering, anxious or not, I'm sleeping 4-6 hours at night about 50% of the time.

From Mar '19 to Apr '20, I was on 50mg Desvenlafaxine XR pills, and my tapering history since 2 May '20 is: 

3 weeks: 37.5mg Venlafaxine XR (capsule with tiny beads)

3 weeks: 25mg Desvenlafaxine XR (pill cut in half)

1 week: 18.75 Venlafaxine XR (capsule of 37.5mg with half the beads)

3 weeks: 12.5mg Desvenlafaxine XR (pill of 50mg cut into quarters, very roughly)

2 weeks: 6.25mg Desvenlafaxine XR (pill of 50mg cut into 1/8ths, very very roughly)

2 weeks: ZERO 

3 weeks: 6.25mg Desvenlafaxine XR (pill of 50mg cut into 1/8ths, very very roughly)

6 weeks: 6.25mg Venlafaxine XR (capsule of 37.5mg with 1/6th of the beads) 

4 weeks:  5.625mg Venlafaxine XR (6.25mg minus 10%, done via bead counting, as usual from the 37.5mg capsule): this is still somewhat imprecise because the beads are in roughly 3 different sizes, so I have to eyeball the volume and make the count accordingly for the ~140 odd beads in every 37.5mg capsule.  

 

Other drugs/supplements I've been taking:

• Vasograin (Caffeine (100mg) + Ergotamine (1mg) + Paracetamol (250mg) + Prochlorperazine (2.5mg)) for migraines: 1-3 pills per moderate or severe migraine episode,  2-3 times a month. I try avoid taking this as far as I can because I'm concerned about the long term effects of Prochlorperazine and Ergotamine. 
• Clonazepam ~0.125mg: 1per day for 2-3 days in mid-August for the withdrawal anxiety attacks 
• Tramadol 50mg: 2 doses over two days (beginning-Nov) for severe shoulder pain. Stopped after I experienced dizziness, and found out it was an opioid that that has a major interaction with venlafaxine (it was prescribed by my French GP who knows I'm on venlafaxine)
•  Vitamin D 100000 IU, as prescribed by my GP

So far, I've been reducing my dosage of desvenlafaxine/venlafaxine depending on when the withdrawal symptoms become somewhat tolerable (within the constraints of amount of drugs I have available). 

 

For now, I have around 30 capsules and 30 pills of venlafaxine XR 50mg, and 20 pills of desvenlafaxine 50mg XR (from my home country, as it's not available in France). I'll be able to get another 60 capsules of venlafaxine 50mg (XR or otherwise) over the next two months, if needed, thanks to a 3 month prescription from my GP. I also have an appointment with a psychiatrist in a couple of weeks, so I'll make an update on my progress here then. 

 

(In the mean time, I still do have some of my "depressive and anxiety symptoms" that I had before getting on drugs, but I've been very gradually able to manage them much better over the past years via learning more about trauma (complex and otherwise), polyvagal theory (most useful to me), not holding on too tightly to DSM labels, and getting more educated again about human history, evolution, psychology and neurobiology, and a tiny bit of philosophy) 

 

Thanks again, and please let me know if I can further add to my post.

Best,

SB

[ChessieCat]

On 11/8/2020 at 12:18 PM, ChessieCat said:

Q:  What are your current symptoms?  How is your sleep?

 

To simplify this even more:

 

Q:  What current symptoms are the worst/affect you the most.

 

I'm trying to gauge whether a small increase in dose might be helpful or if you just need to do a nice long hold to give your brain a chance to catch up.  We generally suggest (unless a person is having adverse reactions from a drug) to wait until they are at what we call withdrawal normal be making another reduction.

 

Stability

 

WDnormal

 

Windows and Waves Pattern of Stabilization

 

If we taper when we are still getting withdrawal symptoms, even mild, they eventually start adding up and bite us in the rear end.  It's better to hold for longer than to continue on your merry way because you want to get off the drug.  And many members find that the lower their dose gets the slower they need to go, reducing less and/or holding longer. 

 

This topic explains why this is probably the case.

 

Why taper paper: dose-occupancy curves

 

Here are the SA topics on your drugs and provides information on how to get your doses.  Keep an eye open for half lives and whether you need to change to twice a day dosing.  If the half life is short you can experience interdose withdrawal.  Another member has just started split dosing her Lexapro and moving the second dose a few hours later she has noticed a big difference in her symptoms after only 5 days (1 hour a day move).

 

I suggest that you consider which drug/form of drug you are going to need going forward:

 

Tips for tapering off desvenlafaxine (Pristiq)

 

Tips for tapering off venlafaxine (Effexor)

 

Also, I'll mention the jump off dose.  We generally suggest trying to get as low as you can, down to 0.xxxmg.  I'm planning to get to at least 0.0625mg and possibly lower, depending on how I'm feeling.  Up until recently I thought I was limited because I'm getting compounded capsules made, but I experimented and found that I can put the capsule contents into water and get really tiny amounts.  I'm currently taking 0.5mg capsules and adding 0.06mg liquid.  I'm very thankful that I found out that I can do this.  Sorry to digress, but I'm still really happy about it and very relieved because before I found this out I was going to have to go down in increments of 0.125mg (the smallest dose my compounder could make at a reasonable cost) and just hold for longer each reduction. 

 

When to end the taper and jump to zero?

 

I've sort of "dumped" a whole lot of information on you.  If you have any questions please feel free to ask them.

 

You might also find this topic helpful.  In Post #1 there are details of the DSM AD WD number, and also a PRINT OUT leaflet recently published by The Royal College of Psychiatry which has been endorsed by several other noted medical bodies.

 

how-to-talk-to-a-doctor-about-tapering-and-withdrawal-what-to-expect

 

[ChessieCat]

1 hour ago, salamibrood said:

(In the mean time, I still do have some of my "depressive and anxiety symptoms" that I had before getting on drugs, but I've been very gradually able to manage them much better over the past years via learning more about trauma (complex and otherwise), polyvagal theory (most useful to me), not holding on too tightly to DSM labels, and getting more educated again about human history, evolution, psychology and neurobiology, and a tiny bit of philosophy) 

 

SA strongly encourages members to learn and use

 

Non-drug techniques to cope

 

And also to learn ways to manage whatever it was that caused them to take the drug in the first place.  I've already linked the withdrawal symptom list in my first post to you.

 

Is it withdrawal or relapse?  Or something else?

How do I know it's withdrawal and not relapse?

 

The only supplements which SA recommends are Magnesium and Omega-3 Fish Oil.  Try a small amount, one at a time, to see how you react.  Only make one change at a time.

 

the-rule-of-3kis-keep-it-simple-keep-it-slow-keep-it-stable

 

Oh and before I go.  There are many existing topics on SA.  The best way to search for them is to use an internet search engine and add site:survivingantidepressants.org to the search term.