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Carmie

Hi Caspur, 

 

Just read your thread. How are u doing?

 

Sending hugs🤗😂

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Caspur

Hi Carmie,

Thanks for asking. I am doing OK at present. As you may have gleaned from my history, I had to fully reinstate venlafaxine to recover from the most hideous withdrawal. At the moment I am slowly tapering off 25 mg of quetiapine (I had to reinstate this too as I tapered too quickly and although the withdrawal wasn't debilitating, I have to work as I used all my sick leave up after the failed venlafaxine taper, so it was back on the drug 😞).

 

First cut has been OK, with few problems. I actually reduced by 15% as I miscalculated (D'oh!) but its turned out OK. The only symptom I'm getting is a kind of mild negative feeling in the morning which seems to go away after a couple of hours. 

 

I think I read some of you history yesterday. Your taper of this filthy drug has been hard by the look of it. How are you doing now?

 

Cheers

 

Caspur

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Carmie
10 minutes ago, Caspur said:

Hi Carmie,

Thanks for asking. I am doing OK at present. As you may have gleaned from my history, I had to fully reinstate venlafaxine to recover from the most hideous withdrawal. At the moment I am slowly tapering off 25 mg of quetiapine (I had to reinstate this too as I tapered too quickly and although the withdrawal wasn't debilitating, I have to work as I used all my sick leave up after the failed venlafaxine taper, so it was back on the drug 😞).

 

First cut has been OK, with few problems. I actually reduced by 15% as I miscalculated (D'oh!) but its turned out OK. The only symptom I'm getting is a kind of mild negative feeling in the morning which seems to go away after a couple of hours. 

 

I think I read some of you history yesterday. Your taper of this filthy drug has been hard by the look of it. How are you doing now?

 

Cheers

 

Caspur

 

Hi again Caspur, 

 

I’m so glad you’re doing okay. Yes it has been quite a struggle tapering the quetiapine but somehow I managed to get myself from 300mg to 7.5mg before I came across this site. 

 

Make sure you hold long enough after this last taper as tapering by 15% was definitely too much. The holds are just as important as the dosage you go down. I’ve been going down by around 5% lately. 

 

It will probably take me another ten years or so to get off the last 7.5mg as my body can’t tolerate big drops. Even with small drops I get withdrawals. If I go too quick I get severe akathisia and that makes me feel suicidal so slow n steady it is. 

 

Wishing you all all the best in your tapering. Keep us all updated.💚

 

 

 

 

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Caspur

I held the previous dose of quetiapine for just over three weeks with very few issues.Have now dropped by 15% of the previous dose and intend to hold on this for 2-4 weeks to see how it goes. I switched dose on the 24th September. No symptoms at all so far. Will slow reductions as the dose gets lower.

 

The NHS Psychiatrist I have seen actually agreed with my approach (falling off chair moment). She suggested 10% every two weeks. She also accepted it is withdrawal, although she stated its very uncommon on people taking low doses and only really effects people who have been on much higher doses. I told her I did not agree. She would like to write a case report on my experience. That's fine by me, especially if it helps someone else in "the system". That said, I would rather she spent that time educating herself about withdrawal issues with psychiatric drugs. I am going to start this process myself I think. Have given her the Psychiatric Times article about the forums (inc SA) and what psychiatry could learn from them, as she told me I should stay away from places like this! I think not.

 

I also had some very bad news about a friends 15 year old daughter. She was admitted to psychiatric hospital about a year ago with " severe depression" and hasn't been discharged. She's in London, so presumably in one of the bigger units? I fear for her. Very worrying. The thought of how she has probably been poly drugged in that time...... I need to find out more.

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Gridley

 

I would hold for four weeks rather than two.  15% is a steep drop.  I suggest you taper at no more than 10% every four weeks.

 

Also remember that sometimes withdrawal symptoms are delayed and can build up if you don't allow enough hold time to let your brain catch up with the changes in dose.

 
 
That's great news about your Pdoc.

 

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Caspur

Thanks Gridley. I know you are right about the tapering speed. I will slow down. There's just some innate impatience I have to overcome. That said, some people can go quicker as is often stated. I will slow down though.

 

Yes, I intend to drip-feed my psychiatrist with more info over time. My ultimate aim is to get her to agree that my venlafaxine episode was withdrawal and get her to support a taper off that too. My problem will probably be that they will want to discharge me from their care at some point and its very difficult to get back in once that's happened. I will have to be very persuasive 🙂

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Caspur

This is a copy of a letter sent to my psychiatrist this week, informing her of the developments around prescribed drug dependence in the UK and trying to get her to understand the issues of withdrawal caused by antidepressants and other psychiatric medications.

 

Please feel to reuse if you wish

Thanks

Caspur

Dr_letter_8-10-18.docx

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Caspur

Please can subscribers to this forum sign up to the email updates from the http://prescribeddrug.org/ site? There are only 222 people subscribed so far. There are many thousands of people on this forum who will benefit from the work this organisation are doing. I do appreciate many people have their own struggles and are in countries far away from the UK, but I'm sure the results of their work will have an impact outside the UK in the medium to long term. Lets show them there's a lot of interest in what they are doing 🙌

Many thanks

Caspur

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Caspur

Hi All,

I have continued to see a psychiatrist on the UK NHS for the past year or so. She and the Care Coordinator also involved have said several times recently that they want to discharge me from their care because I am 'well'. I have resisted this, saying I do not want them to discharge me until I have, at the very least, safely tapered off the quetiapine dose I am on (currently decreasing from 25mg at 10% of previous dose every 20-25 days), and preferably also off the venlafaxine I had to reinstate to escape the withdrawal I suffered. I think the latter is unlikely but

 

Up until very recently, the letters that followed each consultation (to my GP and cc'd to me) have always stated the diagnosis as "Recurrent Anxiety and Depression Disorder/relapse" or something similar. I have always challenged this diagnosis (made by a previous psychiatrist), both verbally and in writing. On the 3rd of December I had another appointment during which I presented the psychiatrist with a detailed description of my experience with antidepressants (starting in 2009) and a DESS symptom chart showing the previous symptoms I had experienced compared to the new ones I experienced when in withdrawal. Last week I got the followup letter for the consultation and the diagnosis had changed to "Previous history of depression and anxiety disorder and Severe Discontinuation symptoms". I nearly fell off my chair! I was so surprised and to be really honest, very relieved. The relief was related to the previous miss diagnoses, the not being believed or listened to by several doctors and two previous psychiatrists and the fact that my belief in what I experienced (i.e. severe withdrawal) has been vindicated. Its a small victory, but one I will savour. I now have to persuade her to keep me in her care until I am safely off the venlafaxine. I think that will be the hardest step to achieve, but time will tell.

Cheers

Caspur

I have attached my account a copy of the DESS chart here.

DESS.pdf

Psych_v0.3.docx

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Carmie

Hi Caspur, 

 

That’s great that they recognised you are going through discontinuation syndrome. I would have felt like falling off my chair too.🤣

 

How are you going decreasing 10% every 20 to 25 days? It really is best to hold for at least a month. Sometimes these shorter holds can catch up with you later on and then you will have to hold even longer to stabilise.

 

Please be careful with tapering. Sending hugs🤗

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Caspur

Hi All,

Please could someone point me to the links to the paper or papers written about the SA forum? I'm sure I read a paper which used case histories from this site in a scientific journal?

Thanks

Caspur

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ChessieCat

Is it this one?  survivingantidepressantsorg-mentions-and-honors

 

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Caspur

Thanks ChessieCat, Yes, this is one of them, but I have a recollection there is another which was published either in late 2017/first half of 2018. I remember members discussing if the source of the data was this forum or not. It was decided that it was.

Cheers

Caspur

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ChessieCat

I've asked the other mods if they recall something.

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Caspur

Thanks very much

 

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Caspur

Thanks very much for your help.

Caspur

 

Edited by ChessieCat
removed quote

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Caspur

11/9.2019 - today is started a new Venlafaxine taper from 75mg using the bead counting method.

 

I have the Pfizer brand, Efexor 75mg capsules. I have reduced by 10%.

 

I am taking Niacin (vitamin B3 and nicotinic acid) and Magnesium Glycinate at night, plus fish oil in the mornings. I intend to document the whole process here for the benefit of others. My history is in this thread. I am not 17 months post reinstatement and hideous withdrawals from tapering too fast off 75mg having been on it for 6 years.

 

After three days the only symptom I've experienced is a mild headach for the first couple of days.

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Gridley
9 minutes ago, Caspur said:

today is started a new Venlafaxine taper 

 

Thanks for checking in, Caspur.  We wish you well with your taper.

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street129

caspur, your story was very interesting. Good luck on your taper

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Caspur

A couple of people have asked how I am using the beads to taper:

 

I use the beads to taper by counting them in a sample of three capsules. I then take an average - so it came out at exactly 250. Then work out what 10% of that number is - easy in this case 25. Remove 25 beads from the capsule to get my first reduction. Hold on this dose for at least 30 days or until symptoms have subsided, whichever is the longest.  Then I will work out the next reduction which will be (250-25)*0.1 = 22.5 ( I will round up to 23), so I need to take 23+25 beads out of the caspule. for the next 30 days etc.

 

I do the counting on a black t-shirt laid out on a table. It stops the beads from moving around too much. I then push them around on the material with a pen knife. To refill the capsules with the beads I simply scoop them up with the large half of the capsule. Its pretty easy due to the electrostatic properties of the beads.

 

I have a spreadsheet to do the calculations. I am sure there are others posted on here.

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Caspur

First reduction was on 11/9/2019 - first 10% reduction to 67.5mg. I've held for 28 days (the number of capsules in the box of meds). Apart from a mild headache for the first two days of this period, I've had no discernible withdrawal symptoms.

10/10/2019 - reduced dose by a further 10% to 60.75.

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Caspur

11/9/2019 - first 10% reduction to 67.5mg. I've held for 28 days (the number of capsules in the box of meds). Apart from a mild headache for the first two days of this period, I've had no discernible withdrawal symptoms.

10/10/2019 - reduced dose by a further 10% to 60.75 - during this period I had 3 or 4 days of lowered mood and irritability, plus a definite cortisol bump on one morning only; all symptoms resolved.

8/11/2019 - reduced by a further 10% to 54mg - (18/11) had some fatigue and gastro symptoms, but quite mild and have resolved. Sleep seems to be improving i.e. not waking up and not being able to get back to sleep, which has been an issue since stopping quetiapine in June/July.

 

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Gridley
55 minutes ago, Caspur said:

but quite mild and have resolved. Sleep seems to be improving i.e. not waking up and not being able to get back to sleep, which has been an issue since stopping quetiapine in June/July.

 

Sounds great, Caspur.  Your taper is going very well.

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Caspur

Thanks Gridley. So far so good. I have quite a demanding job which involves traveling abroad. I'm finding these trips to be very, very tiring. They seem to be a trigger for symptoms. The job isn't too stressful. Just tiring! On the other hand, it could be an age thing 😉

 

I am very curious about one symptom from suffering severe withdrawal. I have been a runner of 5 to 6 years now, maybe longer. Before suffering withdrawal I could easily run 5-8 km without having to slow down or walk any of it. Since suffering withdrawal I have never regained that stamina. I'm lucky if I can cover 2 km without having to walk. Its mostly respiratory i.e., I feel like I cannot breath hard enough and get enough oxygen in to keep going. Its a bit like not being able to get second wind. I wonder if I will recover from this, even after I've completed my current taper.

 

Its quite worrying that withdrawal had such a significant impact on part of my autonomic (nervous?) system. I'm currently injured (groin strain achilles tendon troubles) and so I'm going to be back to square one with the running anyway, but its something I enjoy and I feel aggrieved that its been impacted by a prescribed medication. Not surprisingly doctors just dismiss my explanation!

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Caspur

1/9/2019 - first 10% reduction to 67.5mg. I've held for 28 days (the number of capsules in the box of meds). Apart from a mild headache for the first two days of this period, I've had no discernible withdrawal symptoms.

10/10/2019 - reduced dose by a further 10% to 60.75 - during this period I had 3 or 4 days of lowered mood and irritability, plus a definite cortisol bump on one morning only; all symptoms resolved.

8/11/2019 - reduced by a further 10% to 54mg - (18/11) had some fatigue and gastro symptoms, but quite mild and have resolved. Sleep seems to be improving i.e. not waking up and not being able to get back to sleep, which has been an issue since stopping quetiapine in June/July.

16/12/2019 - reduced by 10% to 49.5mg. Symptoms very mild and hardly noticeable. Annoyingly hungry all the time and tinnitus is bothering me, but I don't think its got any worse. Sleep is relatively good. using Niacin and Mag glycinate before bed. I take more niacin if I wake in the night and cannot get back to sleep. it works really well. Had a bad chest and sinus infection so held a few longer from the previous drop.

6/1/2020 - reduced by 10% to about 44mg. Had no symptoms for 2 weeks so decided to go for it early on this one (22 day hold).

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Caspur

1/9/2019 - first 10% reduction to 67.5mg. I've held for 28 days (the number of capsules in the box of meds). Apart from a mild headache for the first two days of this period, I've had no discernible withdrawal symptoms.

10/10/2019 - reduced dose by a further 10% to 60.75 - during this period I had 3 or 4 days of lowered mood and irritability, plus a definite cortisol bump on one morning only; all symptoms resolved.

8/11/2019 - reduced by a further 10% to 54mg - (18/11) had some fatigue and gastro symptoms, but quite mild and have resolved. Sleep seems to be improving i.e. not waking up and not being able to get back to sleep, which has been an issue since stopping quetiapine in June/July.

16/12/2019 - reduced by 10% to 49.5mg. Symptoms very mild and hardly noticeable. Annoyingly hungry all the time and tinnitus is bothering me, but I don't think its got any worse. Sleep is relatively good. using Niacin and Mag glycinate before bed. I take more niacin if I wake in the night and cannot get back to sleep. it works really well. Had a bad chest and sinus infection so held a few longer from the previous drop.

6/1/2020 - reduced by 10% to about 44mg. Had no symptoms for 2 weeks so decided to go for it early on this one (22 day hold).

27/1/2020 - reduced by 10% to about 39.8mg. Very mild symptoms and not sure if they are symptoms at all - mild headache, tiredness. I do have an insatiable appetite which is really annoying as I find my self eating too much junk. Have gained some weight because of this. Going to get back into my running to get it under control. Up to now its been so wet and muddy where I run, I'd been giving it a miss.

28/2/2020 - reduced by 10% to about 35.8mg. Corona virus starting to have a real impact in the UK now. Its completely surreal. Withdrawal symptoms minor, headaches etc, all mild. Some broken sleep and waking up early in the morning. No noticeable cortisol spike though.

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Rozon1

Hey @Caspur! Just ran across your thread and hope you’re doing well! I am a bit confused on your reinstatement. I guess it’s not clear to me. When you reinstated back up to 11mg, did you hold that for 4-5 months then gradually taper back up to 75mg? Or did you quit the 11mg when it got too stimulating then reintroduce Effexor months later? 
 

thank you!

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Caspur
On 5/19/2020 at 8:16 PM, Rozon1 said:

Hey @Caspur! Just ran across your thread and hope you’re doing well! I am a bit confused on your reinstatement. I guess it’s not clear to me. When you reinstated back up to 11mg, did you hold that for 4-5 months then gradually taper back up to 75mg? Or did you quit the 11mg when it got too stimulating then reintroduce Effexor months later? 
 

thank you!

Hi Rozon, sorry I missed you comment. My reinstatement path was complex and completely ruined by me foolishly accepting advice from a Dr to take mirtazipine, which caused kindling and some horrible side effects. So initially I reinstated 4mg on the advice of SA. This worked but I was naive and took the mirtazipine (for two weeks). I stopped it and tried to increase the venlafaxine dose and that sent me into a severe tailspin and was the beginning of the end for me. I was then stuck on that 11mg dose. Any change in dose was too difficult. I was accused of having an emotional attachment to the drug by a psych nurse, as they fed me other meds to fix the withdrawal. What a load of ****!

 

Eventually 5 months later I was able to reinstate venlafaxine more quickly (about 10mg per week). I was still taking quetiapine and duloxetine, neither of which did anything to help. I went from being a suicidal, depressed and hideously anxious person to 95% recovered in two weeks. Never seen such a surprised look on anyones face as when I told the psych. Eventually she agreed I had "severe discontinuation symptoms".

 

I am now tapering off 75mg of venlafaxine using the recommended tapering approach of 10% of previous dose per month. Its been fine with only very mild symptoms.

Cheers

Caspur

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Caspur

Updated 21st May 2020

1/9/2019 - first 10% reduction to 67.5mg. I've held for 28 days (the number of capsules in the box of meds). Apart from a mild headache for the first two days of this period, I've had no discernible withdrawal symptoms.

10/10/2019 - reduced dose by a further 10% to 60.75 - during this period I had 3 or 4 days of lowered mood and irritability, plus a definite cortisol bump on one morning only; all symptoms resolved.

8/11/2019 - reduced by a further 10% to 54mg - had some fatigue and gastro symptoms, but quite mild and have resolved. Sleep seems to be improving i.e. not waking up and not being able to get back to sleep, which has been an issue since stopping quetiapine in June/July.

16/12/2019 - reduced by 10% to 49.5mg. Symptoms very mild and hardly noticeable. Annoyingly hungry all the time and tinnitus is bothering me, but I don't think its got any worse. Sleep is relatively good. using Niacin and Mag glycinate before bed. I take more niacin if I wake in the night and cannot get back to sleep. it works really well. Had a bad chest and sinus infection so held a few longer from the previous drop.

6/1/2020 - reduced by 10% to about 44mg. Had no symptoms for 2 weeks so decided to go for it early on this one (22 day hold).

27/1/2020 - reduced by 10% to about 39.8mg. Very mild symptoms and not sure if they are symptoms at all - mild headache, tiredness. I do have an insatiable appetite which is really annoying as I find my self eating too much junk. Have gained some weight because of this. Going to get back into my running to get it under control. Up to now its been so wet and muddy where I run, I'd been giving it a miss.

28/2/2020 - reduced by 10% to about 35.8mg. Corona virus starting to have a real impact in the UK now. Its completely surreal. Withdrawal symptoms minor, headaches etc, all mild. Some broken sleep and waking up early in the morning. No noticeable cortisol spike though.

25/3/2020 - reduced by 10% to about 32.3mg some minor symptoms in the first few days, but otherwise all good

22/4/2020 - reduced by 10% to about 29 mg. Have 3 or 4 days with brain fog and inability to concentrate. Felt like a low blood sugar episode. Cleared up quite quickly. Still wake up in night, usually prompted by bladder, but cannot get back to sleep for 1-2 hours. Magnesium glycinate definitely helps

21/5/2020 - reduced by 10% to about 26.1 mg

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Rozon1

Hey @Caspur thanks for the update but still confused haha. Did you discontinue the 11mg when you went into a tailspin or did you just stay on the 11mg for those 4-5 months until you increased? 
 

cheers

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Caspur

Hi Rozon, I stuck with the 11mg throughout. I was too frightened to do anything else.

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