Coming off Venlafaxine. FAIL

Treatment and medication
1

hi everyone,

i'm back on venlafaxine now but had a complete disaster stopping this drug about 9 months ago. the reason i wanted to stop is because it hasn't helped my anxiety much and i get a number of side effects which i hate which just come out of the blue. 

i reduced what i was taking over about 8 months. i was at 375mg and brought it down to 37.5mg over that period. the worst i had from making the reductions were a couple days of higher than normal anxiety around 2 weeks after i made a reduction, i can't remember how much each reduction was. i stopped completely sooner than i would have liked as i went on holiday and forgot my medication.

i thought i was ok but 2 months later while living in a stressful environment my stress was getting on top of me which is a trigger for my panic disorder. it worried me a bit as i recognised the signs, a couple weeks later my friend fell ill it was quite serious and i felt an over exaggerated fear for their safety and welling being. i had also started a new job a few days before stopping my medication and i found it im possible to focus as i was worring for my self and my friend. it got to a point that a lot of the sensations i used to get from my panic disorder came back and i had to stop this trial job i had started.

it's a lot to explain in detail but the stress my mind was under was huge and i was very frightened. the next few months are too scary and painful to describe in words, i'll make it as basic as i can. first i tried to get through it without meds, i started getting more agitated and started diazepam, stomach pains started after going back on citalopram, in desperation i tried other medications similar to diazepam, terrible feeling of about to be sick but was more of a suffering feelings, a few times i had to pace through out the house for 2 hours non stop because of stomach pains, i got myself admitted to a local mental health ward out of desperation for help, was put on highest dose of diazepam for a month didnt work i couldnt believe it aswell well as taking anti sickness and beta blockers and also ompeprazol which maybe gave minor relief to my constant stomach pain, decided to bite the bullet and go back on venlafaxine and stick with it. maybe took 2 months to start feeling better.

sorry if that was a lot to take in.

so looking back now after feeling better for atleast 2 months it is still scary thinking back on what i went through for 5 months. it has come to my attention that a big factor in the whole was stress and feeling helpless. i hated the fact that nothing the doctors gave me work at all, the diazepam was ineffective for the pain i had. i forgot to mention i used alcohol for quite a while as it was the only thing that would help the pain, the pain was too much to bare, i couple of weeks i could have bared but day after day and then month after month the added stress of it all is something thats unbareable but i had to bare it.. i slowly but down on everything and now all i take is 225mg venlafaxine, no alcohol. forgot to mention i was on mirtazipine for a while but stopped that myself.

sorry i couldnt make this shorter but a lot happened. so now im back to where i started and a little wiser. a few key points i have in my mind.

* im i dependant on antidepressants.

* i underestimated how hard it would be to stop.

* i underestimated how stress plays a part.

* i definitely have to get to a better place before thinking of coming off venlafaxine completely.

* i need to come off venlafaxine more slowly give the chemicals in my brain more time to adjust.

thats all i'll put for now. if anyone can share their experiences of coming off please post here. i keep hearing this drug is one of 2 that is really hard to come off.

 

2

Hi Damian

First of all I wanted to say well done for reducing your dose from 375mg to 225mg. That's a whopping 150mg drop.

That may well have been the hardest part in all of this. And you must be commended.

I have reduced venlafaxine from 150mg to 50mg over 6 months or so. The initial drop was the worst. I went through a real horrible episode of not only crying feeling sick to my stomach but a deep feeling of anger.

I can now say I've reached a good place.

I reduced 150 to 75 ( which in hindsight was too big a drop) but went on GP advice. I then decided to do the rest on my own without taking advice because I know my body better than anyone.

I then reduced in increments of 12mg by removing one tiny bead from the capsule. Any more then that I'd be on the floor.

I continued that way up until only a fortnight ago.

Ran out of 75mg so because I had some 150mg left from previous (there are 3 large beads in each capsule) 50-50-50. I just took the 50mg. And I'm feeling ok. Just starting to regain clarity. No fogginess in my brain. A first for many many years.

I think slow is the key. I had to tell myself 'what's the rush?!'

So that's where I'm at. Also if it wasn't for this forum learning and listening to others I don't know where I'd be. For that I will always be grateful.

With love X

3

Hi damian.

Quite a rough experience. But a great learning curve too.

Just wanted to give you a different perspective based on what you wrote.

You actually came successfully off ven, albeit too fast. You did not have protracted withdrawal. What happenned to you was a relapse and every relapse is several fold tougher than the initial problem - feels much worse and is notably harder to reign in.

The reason why diazepam did not help is because it cannot help at that point.

Citalopram could not make a difference because your brain was in need of a SNRI thanks to high doses of ven you were previously on.

Going back on ven was the best thing you could do given the deal. 

Dependence does not play a part in this unless this is how you choose to look at it. You can and will withdraw from this just fine under the correct circumstances!

One way to go about it is: once you are stable and you experience a withdrawal of most (ideally all) your presenting symptoms you would need to endure maintenance therapy on the dose that brought relief. Maintenance should last no less than a year. Ideally two. Then you should try slowly tapering to 150 (lowest dose at which SNRI effect is available). Maintain 150 for (if i am not mistaken - your psychiatrist should confirm - but GP won't know any better smile so hope you have a psychiatrist) at least another year after adjustment symptoms ease up. If no disturbances crop up, you can consider tapering  by another 37.5. If, after 2-3 weeks at a below therapeutic dose (SSRI without notable SNRI action) you manage to even out and feel good - you are ready to taper down.

I took at least 3 months between each drop (and making sure i count from the point my adjustment issues ease off) -this was my holy grail. I never looked back. 4 years now. After a total of 13 years of therapy.

I went through several very stressful situations, am living in a very stressful environment and have a demanding job. I should have caved several times but did not.

Wish you the same and better!

 

4

Hi Ssara,

Just read your post with great interest. I have 150mg capsules and want to reduce a little but there's hundreds of tiny white beads inside each capsule so can't see how to do it. My doc wants me to stay on this dose for a few more weeks but I really feel I need to reduce. Was all set to do it myself until I opened capsule and saw how many beads were inside !!  Any suggestions. Thanks x

5

Hi Elaine

The meds I have are Venaxx XL 150mg prolonged-release capsules , hard Venlafaxine.

What is the name of yours?

Sara x

6

Hi Sarah,

Alventa XL prolonged-release capsules, hard, Venlafaxine. That's what's on the box x

7

So maybe that particular pharmaceutical brand contains a million beads as apposed to the ones I take. Are you in the uk? If so then why not ask your GP to change the brand.

The other option is to literally count the beads to see how many mg are in each one 😕 And then working out how many to remove to get the required dose. X

8

Hi Sara,

Yes, I'm in the uk. I've dropped from 187.5mg because that dose made me almost lose my mind so I can stick with 150mg for a little while until my doctor gives me a lower dose. I had such a struggle to get proplonged-release after eight months on instant release. I'm ok on 150mg just anxious to be free of this medication but I suppose there's no immediate rush. I don't want to mess about with all the beads in the capsule because doubt I could get it exactly right. I have to collect a new prescription tomorrow so maybe it will be a different brand. Thanks for your help x

9

A lower dose would be 75mg.

I know omega fish oils help as well as magnesium during this period.

You could also look into 5 HTP.

Having someone supporting you is essential. Someone who is prepared for any withdrawal effects. But if reduced slowly enough and I mean real slow you should be absolutely fine.

You will find a way that works for you of that I'm certain.

Keep in touch

Sara x

10

thanks, i definitely won't rush this time. next time i see the doctor i'll see if its possible to get the pills with beads in, for well well over a year i've only had the tablet foem.

11

The Dr may not agree with removing the beads but it's been the ONLY way forward for me.

Best of luck x

12

thanks, you've given me some things to think about. it feels quite scary to be stuch in this situation. i think i understand so the feelings i had were more the panic disorder relapse than withdrawl from venlafaxine. i've had years of anxiety but had a panic disorder start after getting a bad reaction after being put back on fluoxetine, this continued for a month using fluoxetine but was still a mess so i stopped and was put on citalopram that worked for me well. a year and a half later the panic suddenly started again but i think i just stayed on citalopram, these panic episodes would last about 2 months then die down, so i guess that was a relapse. a few months later i was put on venlafaxine as i was struggling with background anxiety, eventually getting to 375mg with not much improvement with increasing doses. it was about a year and a half later that i started to tapper down. and my latest panic was another relapse i guess. 

i have started seeing a very good therapist for a few months now, i've learnt the i have been dealing with a lot of stress. each time i had had this panic disorder thing happen, i've always felt high stress levels leading up to it.

i wonder if i would have succeeded if once i had stopped my medication i was less stressed, i also wonder what wold have happened if i just waited it out, that would have been tough as it just seemed endless.

13

when i was last tappering down i was given this advice from betsy0603.

Your nervous system doesn't notice 50% cuts as much when you are at the higher dosages, but at the lower dosages, your system really notices a 50% cut!  This is because at the minimum effective dose of 37.5 mg, your neuron receptor blockage is still 80%!  It's complicated, but to try to regain balance, our systems actually ADD receptors, so that is why we tend to have to keep raising the dose, an arms race of sorts.  SSRIs work by occupying the neuron receptors to prevent the neurons from resorbing serotonin, making it hang around in the gap longer.  

So, when you make cuts that start bringing you below 80%, your system starts to really notice the imbalance the cut creates.  This means we have to make cuts smaller the lower we go in dose.

It may be possible for you to get a liquid version of ven, which would make it easier to cut smaller than what is convenient with the tablets.  Some, myself included, go as far as to buy a jeweler's mg scale and weigh out our doses.  Ven withdrawal is one of the worst, so it is actually recommended to make 10% cuts of the previous dosage every 3 to 4 weeks.  It is important to feel stable before making the next cut.

14

yeh you have to do whats best for you sara, someone recommended buying jewelers scales to accurately measure out smaller doses which i may do if i only have solid tablets.

 

15

ive made a small reduction 37.5mg. so from 225mg to 187.5mg. also bought a pill crusher so i can make smaller cuts.

16

So far so good?

How are you getting on using the pill crusher?

17

havent used it yet as a just started taking a 37.5mg tablet less. i need to figure out how much the next reductions will be.

18

my previous coming off venlafaxine threat for reference.

https://patient.info/forums/discuss/coming-off-venlafaxine--488851

19

Hi Damian

That made good reading. Thank you for putting the reference up.

So whatever you do stay on this dose until stabilised. I'm doing ok on 50mg. Still suffer with anxiety but have clarity of mi d now to work out my triggers.

Sara x

20

hi,

hows everyone doing. i've droppend down to 150mg a day now and have been on that for around 3 weeks. will maybe stay at this level for another month.