Dicks3: Stopped Venlafaxine XR after 13 years - need advice

[Dicks3]

I have been advised to sign up on Surviving Antidepressant by a lady who runs an Effexor Facebook group.

 

I was on the Anti-Depressant Venlafaxine XR for 13 years up until January 2020 and apart from a couple of short-term dosage increases over that period, I was mainly on 75mg once a day.

 

The Psychiatrist took me off of Venlafaxine over a 4-week period by reducing to 37.5mg and then coming off completely.

 

I have no idea whether I have withdrawal syndrome or not, or if it is just me depression and low mood come back. Also, I do not know if I have caused myself permanent or irreversible damage.

 

What I do know is that I have never really felt right since and feel like to soul and emotion has been sucked out of me if that makes sense.

 

Also, I have just found out about something called PSSD which I also wonder if I have as I have no Libido.

 

I don’t know where to start with this or where to go and who to see as I have had a horrendous 38 months under the UK NHS mental health services who won’t say I was taken off too quickly or if this has caused me problems.

 

So any help or guidance would be greatly appreciated.

Edited August 10, 2021 by arbor

[arbor]

Hello @Dicks3,

Welcome to SA.

I'm sorry you're going through these symptoms.  They sound suspiciously like withdrawal symptoms to me.  

On 8/9/2021 at 4:04 AM, Dicks3 said:

I do not know if I have caused myself permanent or irreversible damage.

I want to comment right away, that first, you were following your doctor's advice.  Problems caused by our medical systems are not your fault.  I have found that a persistent symptom of the withdrawal-mind-state is negative "self-talk": blaming, shaming, regretting, doubting, and so forth.  The circuits of our nervous systems that process these emotions and thoughts I believe is injured.  As you can read on the site, these injuries mainly improve and heal, but usually very slowly.  If the Olympics had a category for patience and endurance, all of us on this site would be racking up gold medals.  

 

To get you started and to give you the most pertinent information, could you complete your signature to include the dates and dosages (or as close as you can recall) of your taper and final use of your drugs from the last two years.  Here's a link that can help you with that:

Account Settings – Create or Edit a signature.

 

On 8/9/2021 at 4:04 AM, Dicks3 said:

whether I have withdrawal syndrome or not

 

Perhaps these links can address some of your questions:

 

What is Withdrawal Syndrome?

Patterns of Recovery 

The Power of Neuroplasicity

 

 

On 8/9/2021 at 4:04 AM, Dicks3 said:

I have no Libido

 

Many people report sexual issues both on psycho-drugs as well as a symptom of their withdrawal.  If you haven't found this link, you might find it informative:

PSSD Post-SSRI sexual dysfunction - Symptoms and self-care

I also want to include this link to give you some hope:

☼-theautomator-recovering-from-pssd

 

The main guidance I recommend is reading through the symptoms and self care section to begin with.  Read what others are sharing.  

 

We don't suggest many supplements, but two 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

 

Also, let me recommend that you find your way to the success stories right away--as they can really sustain us:

Recovery Success Stories

 

This is your Introduction site where you can ask questions and connect with other members.

I'm glad you've found us, and I look forward to your recovery. 

Arbor

[Dicks3]

Hello arbor

 

Thank you so much for your very detailed comment. I will go through this in detail.

 

I thought I had done my signature , is it not done correctly?

[arbor]

Dear @Dicks3Yes, your signature looks great.  I must not have seen the top line correctly.

My best wishes🕊️

Arbor

[Dicks3]

Titled:  How to weigh out medication or count beads

 

I don’t want this to be a long post, I just really need some help and guidance

 

As I have posted previously, I was taking Venlafaxine extended release, mainly at 75mg, for 13 years until January 2020 when I was taking off over 4 weeks by my psychiatrist who reduced me to 37.5mg for 4 weeks then to nothing.

 

Because of how terrible I feel, and that I have no doubt that what I am currently suffering from is protracted withdrawal, after a battle I got referred to a new NHS deprescribing clinic with a psychiatrist who I actually see from the film ‘medicating normal.’

He confirmed that he felt that I was suffering from withdrawal / discontinuation syndrome.

 

Although he does not know if it will work or not, and other than just giving it whatever time it takes, he said all we can try is for me to start back on Venlafaxine at a very low dose of 2mg and no more than a maximum of 5 mg.

 

He said this would be a 50/50 chance at best and that if it worked and I stabilised then I would come off very slowly over a period that could take 2 years.

 

The last thing that I ever wanted to do was go back to taking Venlafaxine.

 

But I simply cannot go on feeling as bad as I do.

 

The psychiatrist is going to write a letter to my GP and ask her to prescribe the Venlafaxine in Liquid for.

 

However, there is no guarantee that my GP will do this and if they don’t then my only option is to either bead count or weigh out the medication myself.

 

I have got a set of Gemini – 20 milligram scales but I am having trouble getting this right, and that is what I need help with.

Please forgive me if I am really stupid.

 

The scales are calibrated and from what I have Googled 75mg should weigh 0.075g.

 

However, when I put the complete capsule onto the Gemini scales it weighs 0.326g. Then when I tip the beads from the 75mg capsule onto the scale they weigh 0.235g.

 

Also, the beads are so very tiny.

 

I really cannot get this wrong.

 

So, can anybody please help me with this?

 

Also , has anybody else done as I have been recommended?

 

Thank you very much.

 

Edited November 4, 2021 by manymoretodays
merged to members Introduction, title added, font size reduced, mmt

[manymoretodays]

Hi @Dicks3 and welcome back and welcome aboard,

 

I moved your recent post back here to your main Introduction.  I also went ahead and reduced the font size on your post.  That really large print is difficult, or hard on the eyes.  You might reduce your font size when posting further. Thank you.

 

This is your introduction/journal page where you have now introduced yourself to the community, you can ask questions here regarding your tapering, give updates, and just keep a record of your journey.

 

So I see that you've been off venlafaxine since January of 2020?

Are you on any other drugs/prescription medications/psychoactives at present?

 

On 11/4/2021 at 9:05 AM, Dicks3 said:

Because of how terrible I feel, and that I have no doubt that what I am currently suffering from is protracted withdrawal, after a battle I got referred to a new NHS deprescribing clinic with a psychiatrist who I actually see from the film ‘medicating normal.’

He confirmed that he felt that I was suffering from withdrawal / discontinuation syndrome.

 

Although he does not know if it will work or not, and other than just giving it whatever time it takes, he said all we can try is for me to start back on Venlafaxine at a very low dose of 2mg and no more than a maximum of 5 mg.

 

He said this would be a 50/50 chance at best and that if it worked and I stabilised then I would come off very slowly over a period that could take 2 years.

 

The last thing that I ever wanted to do was go back to taking Venlafaxine.

 

And I see that you are considering a reinstatement as well.

I am going to add to some of the links that arbor gave to you above, today.  They'll be here, for you to reference when needed.  And I'm not sure how much you have read on site, to date, or how you are doing navigating your way around.

 

I think it is great that you are looking into things more before just blindly reinstating.  Always good to empower oneself with information first, then decide.  You have been off the Effexor for quite some time now too.  We've found reinstatements to be more helpful with mitigating WD symptoms, when done early on, within days, or weeks after drug cessation.......sometimes up to a few months later does help.

And I'm not saying do not reinstate now, I just want to inform you a bit more, and give you information, and educate a bit.

Cool that you have found a doctor too.  And keep in mind, that you may decide to reinstate with not Effexor, but another drug........we can help you determine a plan.

 

And oh my gosh, you got to go to a deprescribing clinic??!!!  Very cool.  It makes me happy.  And you got some really sound help there too!!!  Very fortunate for you.

 

What kind of WD(withdrawal) symptoms are you currently dealing with?

Dr.Glenmullen’s withdrawal symptom list

 

*About reinstating and stabilizing to reduce withdrawal symptoms

 

*Tips for tapering off Effexor and EffexorXR(venlafaxine)

I know you are off of the venlafaxine now, ^ does give some great information to help one get the very small doses needed for a reinstatement.  There are many methods!

 

Important topics in the Tapering forum and FAQ's

 

It might even be worth a try to reinstate with something else besides Effexor, very small dose, but I think I will hold on any suggests, but WILL ask another staff member to stop by too, and take a look.

We'll help get something figured out with either scale, or bead counting, or liquid too.  You'll see those specific topics in the FAQ's link.  And then ask here too, right here on your Introduction.

 

And so okay, I may have given you more than you wanted, but it's here, for reference now, and for you to peruse at your own pace.

Welcome back.

 

Love, peace, healing, and growth,

manymoretodays(mmt)

 

Edited November 5, 2021 by manymoretodays
corrected Effexor link, merged to members Introduction, title added, font size reduced, mmt

[brassmonkey]

The difference between the prescribed dose strength and the actual weight of the does is a very common point of confusion. The dose strength of your capsules is 75mg. This means that there are 75mg of Active Ingredient in that capsule. We write this as 75mgai (milligrams Active Ingredient). That is a very small amount of material for the manufacturers to work with so to make it easier they add "fillers" for more bulk and weight. Those fillers bring the total weight up to 235mgpw (milligrams Pill Weight). That would be 75mgai and 160mg of filler.

 

If we divide 235 by 75 we get 3.1. This is the AIC (Active Ingredient Concentration) and tells us that for every 3.1mgpw we get 1mgai.

 

To calculate the dose weight for 2mgai, 3.1 X 2 = 6.2. So you would weigh out 6.2mgpw on the scales and take that for your dose.

 

To calculate the dose weight for 5mgai, 3.1 X 5 = 15.5. So you would weigh out 15.5mgpw on the scales and take that for your dose.

 

You can not cut or crush the beads. This will render them useless. With the weighing method you have to work to the nearest bead to the weight you desire. It is usually best to round up in these cases.

 

This will be the best method to get you reinstated and stabilized. It will also work for tapering, but the bead counting method will be more accurate. We can discuss that once you are stable for a while and ready to taper.

Edited January 2, 2022 by manymoretodays
No edit, was sharing- pressed wrong button(mmt)

[Dicks3]

Hi brassmonkey,

 

Thank you so much for your very detailed response and explanation.

 

Though I am still confused as to exactly what the reading in grams should be on my Gemini scales for 2mg and 5mg of Venlafaxine.

 

Sorry for being so stupid but I really need to get this right.

 

Also, I presume that if I get prescribed Venlafaxine from a different manufacturer then the contents of the capsule will weigh differently?

 

Are there any videos to show an idiot like me step by step?

 

Would it be better and easier to do this using the bead counting method rather than trying to weigh out 2mg?

 

Thank you once again.

[manymoretodays]

Hi Dicks3,

And many thanks brassmonkey for your input.

I'll attempt to answer some of your most recent questions now.

The Gemini20 scale reads out in grams(abbreviated g). 

To convert the of grams to milligrams I usually use an online calculator, myself, others may vary.

So I just googled "mg to grams" and a nice calculator comes up, so then I plug in the numbers and voila.

 

When going from mg to grams the formula is: divide the mass value by 1000.

23 hours ago, brassmonkey said:

To calculate the dose weight for 2mgai, 3.1 X 2 = 6.2. So you would weigh out 6.2mgpw on the scales and take that for your dose.

 

In the above ^ 6.2 mgpw then is going to read out on your scale as .0062 or 0.006, as the Gem20 will only weigh out to 3 points past the decimal.

This then, best approximates the weight for a 2mgai dose strength of the beads in your Effexor capsule.

I hope this helps with your first question below.

 

28 minutes ago, Dicks3 said:

Though I am still confused as to exactly what the reading in grams should be on my Gemini scales for 2mg and 5mg of Venlafaxine.

 

Sorry for being so stupid but I really need to get this right.

 

Also, I presume that if I get prescribed Venlafaxine from a different manufacturer then the contents of the capsule will weigh differently?

 

Are there any videos to show an idiot like me step by step?

 

Would it be better and easier to do this using the bead counting method rather than trying to weigh out 2mg?

 

And I do admire your tenacity in wanting to get this right.   Try to not refer to yourself as "being stupid, or an idiot like me".  It's tough for most of us, when in WD, or waves.......and I don't want you to get stuck in that kind of loop of negativity toward self.

 

I think you'll have to go with weighing capsule contents, each time you are opening a capsule and weighing the entire weight of the beads.

Contents of just one capsule of 75 mgai Venlafaxine is going to provide you with multiple doses, of the 2 mg or 5 mg dose strength.

Best to store the additional beads, in an amber container, with a lid, clearly labeled with the weight you got for that capsule, in a cool, dry place.

Or many, will additionally, put each dose into a gelatin(or vegetarian) capsule, of the OO size.  They are large enough to make it a bit easier to fill them.  I think optionally you could once your dose is weighed, transfer it from the scale to a small piece of paper, and then add it to a tablespoon of applesauce to take it in.

It's up to you what is going to be most practical.

 

  Yes, you can find some video's showing weighing examples, in the first post here:  Using a scale to weigh and measure doses

You'll find many helpful ideas, input, and tips from members and staff there, in the following posts too.

 

More about bead counting:

On 12/20/2012 at 11:49 AM, Altostrata said:

See http://survivingantidepressants.org/index.php?/topic/1461-counting-beads-in-a-capsule-versus-weighing/

 

In Effexor XR, I believe the filler is combined with the drug inside each bead. The capsules are filled by weight; this wouldn't make sense unless there was a consistent ratio of filler to drug in each capsule.

 

The beads vary slightly in size, that's what causes the dosage variation while counting beads. If you are sensitive to this variation, weighing with a digital scale will be more exact.

 

I think both topics linked to will be helpful for you now.

 

And best, L, P, H, and G,

mmt

[Faure]

Sorry you’re feeling so bad from the psychiatrist prescribed too fast taper. It really is a disgrace that they are not getting themselves up to date with best practice. What excellent news you have been referred to a deprescribing clinic. At least things are moving in the right direction for AD users, albeit very slowly. I hope your reinstatement helps.  
 

Whereabouts in London is the clinic? I live in Surrey and am doing well with my taper advocated by BrassMonkey here on Surviving Anti depressants so don’t need it, but it’s useful to know these things ☺️especially if my GP ever complains about what I’m doing! It would be good to refer to such a clinic to back up my slow taper. 

[manymoretodays]

Hi Dicks3,

Were you able to start a reinstatement?

And how are you doing?

[Dicks3]

Hi Faure,

 

The deprescribing clinic is NELFT Psychiatric drug Deprescribing Clinic (PDC)

 

It comes under NELFT NHS Foundation trust and is based at Goodmayes hospital.

 

I can send the leaflet / flyer for clinic to anyone who wants it.

 

It is run by Dr Joanna Moncrieff and Dr Mark Horowitz

 

I hope this helps.

 

 

[manymoretodays]

Hi there Dicks3,

6 hours ago, Dicks3 said:

Hi Faure,

 

The deprescribing clinic is NELFT Psychiatric drug Deprescribing Clinic (PDC)

 

It comes under NELFT NHS Foundation trust and is based at Goodmayes hospital.

 

I can send the leaflet / flyer for clinic to anyone who wants it.

 

It is run by Dr Joanna Moncrieff and Dr Mark Horowitz

 

I hope this helps.

 

 

 

 

And thank you for coming back around.

How are you doing, if you don't mind saying?

I hope well enough.  Oh, I do....💜

 

We do have this topic that you could add to, or I would be happy to post there for you.  Could you PM me the leaflet/flyer?

Recommended doctors, therapists, and clinics

 

And yes, that is very helpful, what you posted.

Thankyou.

 

Love, peace, healing, and growth,

mmt

[Dicks3]

Hi manymoretodays,

 

No problem and sorry that it has taken me a while.

 

I do not hang around in or look at groups and forums very much at all as I do not feel that it is good for me at the moment. Though I do wish that I actually had a person in real life who is going through exactly the same thing as me for support rather than just online.

 

I am not doing great to be honest and just feel like I am functioning at my current maximum level each day and treading water in constant anhedonia.

I do not like the person I currently am or how I currently feel.

 

I have not decided on whether or not to start the reinstatement as advised by the deprescribing clinic yet as not only does it seem an ordeal, I also want starting Venlafaxine at any dose again to be a last resort as I want to exhaust some other options first. Currently I am trying Amino Acid therapy.

 

Also,I am trying to deal with my other personal issue alongside the withdrawal and have an appointment with a UK PSSD expert in January.

Yes, of course I will PM you the leaflet/flyer for you to post if you tell me how to do it, or I can email it to you.

 

The following blog post by Dr Mark Horowitz, who runs the deprescribing clinic, is an interesting read with some interesting links in it.

 

https://evidentlycochrane.net/stopping-antidepressants-what-is-the-best-way-to-come-off-them/

 

Best wishes

 

Dicks3

[manymoretodays]

Hi Dicks3,

That's okay.  We all have to do what is best for us.

Just know we'd love to hear your experiences if you do a mini micro dose reinstatement.

And do know that, at least in my mind......there is a big difference between doing a small, small reinstatement for possible help with WD symptoms, and simply remedicating oneself.  I mean if that is what is holding you back.......

The risk is there certainly of being too sensitized, and possibly kindling.

 

No judgement from me on those who choose complete re-medication though.  We don't see them, or encourage them to stick around, as that is fodder for other sites.   Not what we are about here.

 

When I got here I was 6 months or so off Lexapro AND remedicated with 2 drugs, and had a lengthy decades long history of medications/drugs.  And then even in my early acute WD state, was able to come to the conclusion that reinstatement would probably not be for me.  I based it on the time since off Lexapro, and the other drugs I was on, and somehow reached the right decision for me.

Oh, of course it would have been nice if the knowledge was there, at the hospital I went to, to give me a mini-dose of Lexapro.....after my too quick tapering.  But it was not.  I even had my liquid Lexapro with me at that time.  Acute WD for me was......well indescribable....yet, I'll try in my own topics soon to sum things up a bit.

I am doing well now.  I must add that. 👩‍🌾🤗  I don't think I would be if I had stayed medicated/on drugs. 

 

I think there is enough in the reinstatement topic, and was back then, to allow one to make an informed decision.

So I get it. 

 

And still hard in most locales to even think about meeting face to face with supports.  You might be able to find a local phone buddy though or something.....

You can try: "Check in" topics SurvivingAntidepressant members near you  to find someone nearby going through something similar.

It is difficult to find anyone going through exactly what you are.......I definitely had to find people who understood enough, but many did not get it completely.....for support.  And I did, likely spend too much time alone.......possibly not, and that too, can be an advantage and disadvantage both.

 

Time, time, time proved to be most helpful, with just enough understanding from others, so that their expectations of me, were not super high for a long time.  As well as my own.

And non-drug coping practices......many.  They have become a way of life now, for me.

 

Keep your attitude positive as much as possible.  People are healing from all kinds of things out there.

 

Do you see the little envelope icon at the top right of your screen?  Click on that and then it is pretty self explanatory as to how to send a PM(private message) to me with the flyer.  I'll go ahead and share your other post above to Faure, in the doctors and therapists topic now.  I understand that they may be more local and have limited intake capabilities but it might help someone to see it there who is able to gain access.

 

Thanks again.  Wishing you well and beyond!

 

L, P, H, and G,

mmt

 

 

Edited December 20, 2021 by manymoretodays

[Dicks3]

Hi MMT,

 

I see the envelope icon and how to PM you.

 

However , I cannot see that I can attach the deprescribing clinic leaflet/flyer document to send to you?

 

So sorry but I am not the most technical.

 

Dicks 3

[manymoretodays]

Oh LOL, nor I Dicks3.

I can generally do a lot more around this site than I used to, but still......my general all around technical knowledge/usage is not the best.

If it would just stay put for awhile.......I mean the changes come quickly, and it is difficult to keep up.

 

Is the document something you could send or add as an attachment in a reply here?

That might be a possibility. 

 

And then, if you want to add anything to:

Recommended doctors, therapists, and clinics

Do so.  I added in what you had written to Faure there.

And also shared the article in the "In the Media" forum.

Just click on the underlined passage to go directly there, to that topic.

 

Here's where your shared article went to.

https://www.survivingantidepressants.org/topic/26189-stopping-antidepressants-what-is-the-best-way-to-come-off-them-from-cochrane-uk/

 

If you can get to the Home page here, or find that.....do so, and then scroll down and explore.  Of course stick to the more hopeful and positive.

And then post a bit more about you, right here, if you want.

Others will show up to support.

Or go lend support to others.....it's amazing how that can really help us all heal up a bit more, or faster.

 

Happy Holidays.  And Winter Solstice begins today!!

 

Edited December 21, 2021 by manymoretodays

[Dicks3]

Hi MMT,

 

Yes I am able to send the the deprescribing clinic leaflet/flyer document as an attachment in this reply.

 

Thank you for your help and guidance.

 

Have a great Christmas and best wishes

 

Dicks3

NELFT PDC Flyer.docx

[manymoretodays]

Thank you, and I got it.

I'll send it over to topic too.

 

Happy New Year