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Schnozzle: 15 years post-venlaflaxine


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I was asked in another thread (http://survivingantidepressants.org/index.php?/topic/11070-schnozzle-long-term-withdrawal-effects-on-sense-of-smell/?hl=%2Bsuccess+%2Bstories#entry203097) for a bit more detail on my experiences, particularly as I have now been off meds for a long time. So below is some info on the before meds, during, and after. I hope something from it will be useful for you.

So, starting out back in 1994, I was a high performing student, started having problems as a teenager and in 1998, at 18, had a pretty major breakdown and dropped out of school. 

Due to a combination of that and other general things like a typical family Christmas consisting of me coming downstairs for half an hour to sit in silence then go back upstairs to lock myself in my room and go to bed, my parents bundled me off to see a therapist. I just sat there with my arms folded not saying anything though, so that was the end of that. Lots of meaningless misery, continual suicidal thoughts, and some hand/arm/mouth self harm. Partially for a distraction, and partially because the pain gave me something that I 100% understood and had 100% control over.

So anyway, I started to rebuild again and went back to a different school the following year, and managed to cobble together enough grades to get into a second rate university.

I lasted there for a year before having an even bigger breakdown, everything spinning faster and faster and more out of control until my brain snapped and was no longer capable of anything at all. 
 
After a few weeks of gradually building up again to being able to do things like eat and leave the house I was told by the campus doctor that there might be depression and social anxiety involved, and due to the breakdown happening over winter it might be worth looking into seasonal affective disorder. But overall she said that the most important thing was to take some time out to recover and not come come back until I was ready.

A more pressing concern was being broke, so I ended up back in my home town, and luckily managed to get one of the few jobs in my field that existed there back then (web industry - this was in a seaside tourist town in 2000), and managed to get somewhere stable to live.

That lasted maybe six months, then I was made redundant, and everything crashed, and was prescribed venlaflaxine by my doctor. He said that as I was in such a mess I should be on the double strength (150mg capsules instead of the usual 75mg capsules) Efexor XL, and to be on the safe side I should take two of them per day, for a total of 300mg/day.
63521af1-2391-4d6f-810f-a38f009bed75_270
That made me vaguely functional, in no fit state to work but enough to be able to face seeing people again, so I got some degree of social life back. Online communities also helped, I don't expect anyone here will have heard of it but there was one called The Garage started by an excellent chap by the name of Kip Crosby that helped me enormously between the time of dropping out of school the first time and those Efexor days. 
 
The venlaflaxine carried on for about a year, with the usual cornucopia of extreme side effects, until one day in 2002 when sat in a bar I looked across at my friends. I watched them laughing and chatting and playing darts, and realised how long it had been since I had felt a real emotion or had a coherent chain of thought. I realised that all I had been going through was a chemical lobotomy to provide some relief from negative thought cycles, going through all the awful side effects in exchange for not actually addressing or solving anything.

So went to the doctor and told him I wanted to get off it. So he prescribed a plan of one day on,one day off... Alternating each day between 300mg and 0mg. Going through cold turkey every 48 hours had obvious effects, so after a couple of weeks I decided my doctor was an idiot and that I would have no further dealings with him, and as I couldn't handle any more of the 300/0 alternating without killing myself, I flushed the rest down the drain and went full cold turkey (DO NOT DO THIS. More on that later.).

Things were kind of OK for a bit after that, but soon enough I started heading back into the whirling vortex of doom and despair. I remembered the original university campus doctor suggesting that it might be seasonal, so I tried swapping my regular yellow lights for regular white ones, but that didn't make any difference. The whole seasonal affective disorder concept sounded like silly quackery to me anyway, so I just forgot about it, and carried on sinking.

Later that year I met someone very special, which brought me back to life again. At the end of the year she was heading off to university, so that gave me motivation to do the same. Managed to see it through this time, and three years later (2006) finished with top grades and landed a good job with the BBC.

But through all of this I was still in a bad way. While at university I couldn't really function at/face social events, which continued through into the workplace, having to run out of conferences, team-building exercises etc and flee home to recover from the trauma. Also all the other typical stuff like exhaustion, lack of interest in anything or anyone, carb cravings, weak immune system, despair, pointlessness, zero sleep pattern, etc. So for long periods of time a typical routine would be wake up exhausted, consume vast amounts of sugar and caffeine to try make myself productive enough to work, and after work consuming vast amounts of alcohol to get my brain to shut up.
 
Soon enough this ended up with make or break time with my relationship, so in 2009 I started making a more concerted effort to fix things. Thinking back to the original university doctor's mention of social anxiety, I read up on CBT and went through a self planned / self administered programme, which helped enormously with some of the issues. I'd recommend it to anyone. And took another look at the seasonal affective disorder thing, as even though I was in a haze and couldn't really remember things well enough to be able to properly analyse, I did have a feeling that I was worse in the winter. For example what I mentioned back at the start about family Christmases.
 
So unlike my previous misguided attempt, this time I did it properly and bought an actual proper SAD light (Philips HF3330, now discontinued), which was a revelation. Within a week of using it, I had changed completely. There cotton wool had been pulled out of my head, and the confusing haze turned into being able to look up and see the world again.
 
71PFy2cCS6L._SX425_.jpg
 
It wasn't perfect, and was only really useful in the first couple of months at the start of winter, but it was still the biggest difference since I was a teenager.
 
Then a few years later (2012) I heard that my mother and sister were planning on visiting New Zealand for Christmas. I had recently started contracting, meaning I worked on short term jobs for a range of companies and had full control over my time, if I wanted to take time out I was able to just stop taking on contracts for a while. So I decided to go along too, make it into a bit of a business trip with a longer stop over in Australia for a bit of work too, taking it up to a total of two months out there. This was because the seasons there are opposite to the UK. In December it doesn't get dark over there until 9pm, so I wanted to see if that made a difference.
 
It didn't just make a difference, for the time I was there I was completely cured. Of the below list of typical seasonal affective disorder symptoms, I had every single one of them apart from panic attacks and hypomania, and some of them to really extreme levels too. While in Australia, they all disappeared:
  • lack of energy for everyday tasks, such as studying or going to work
  • concentration problems
  • sleep problems
  • depression – feeling sad, low, tearful, guilty, like you have let others or yourself down; sometimes hopeless and despairing, sometimes
  • apathetic and feeling nothing
  • anxiety – tenseness and inability to cope with everyday stresses;
  • panic attacks
  • mood changes – in some people, bursts of hyperactivity and
  • cheerfulness (known as hypomania) in spring and autumn
  • overeating – particularly craving carbohydrates and putting on weight
  • being more prone to illness – some people with SAD may have a lowered immune system during the winter, and may be more likely to
  • get colds, infections and other illnesses
  • loss of interest in sex or physical contact
  • social and relationship problems – irritability or not wanting to see people; difficult or abusive behaviour
  • alcohol or drug abuse.
But the biggest difference was a really surprising one for me. As you get older it normally seems like each passing year goes by a bit quicker, but to my surprise, 2012 instead seemed twice as long as any previous year.
 
I figured out that it is because a very strong effect I have is lack of perception of time passing. So, if you picture that feeling that you have when your alarm goes off and you're fumbling around in a haze trying to hit the snooze button... when you're in that state it can be hard to tell whether a minute or ten minutes or an hour has passed. And that's the state I'm permanently in, that's as awake as I had ever been in the winter, including not being able to really say whether something happened a day, a week or a month ago.
 
So every year up to that point I had experienced 6 months of normal time (7-8 once I got the SAD light) and then a haze of indeterminate length. This was the first time I had ever experienced what 12 months felt like, so it felt like my life expectancy had doubled.
 
All of this finally 100% cemented the comment the campus doctor originally made back in 2000 about the possibility of seasonal affective disorder.
 
The following year I headed out to Australia again for a few months, with the same effect. But sadly continuing to do that was not sustainable, either financially, for my marriage (and presumably at some point family), with work, or socially. Which was tough. Finally finding a cure, and then having it ripped away through practical unfeasibility.
 
The only option left seemed to be to move to the equator, which meant two options: moving very far away from friends or family (e.g. Singapore) or moving somewhere closer to home but to somewhere where we would both have to give up our careers in tech and science. Neither of those had any appeal.
 
So for winter 2014 I came up with a last ditch attempt to avoid that. The plan involved a place called the Canary Islands off the cost of southern Morocco that is just on the borderline of the SAD 'safe' area, where the top dotted line crosses the west coast of Africa... 
map-of-areas-affected-by-sad.jpg
...but despite being so far away (1800 miles) has ludicrously cheap air fares (£70/$100 for return flights from London to Gran Canaria and back) and cheap accommodation too, so it would be feasible for me to alternate between there and the UK every two weeks for Nov/Dec/Jan/Feb.
 
The first two week trip out there was an abysmal failure, I spent the whole time sat on the edge of my bed staring at the corner. The second time I took my SAD light with me, and it worked. Essentially the daylight hours in the Canaries are about the same as the UK in Sept/Oct, and when the daylight levels are like that in the UK, using an SAD lightbox is enough for me to get by on.
 
So that's where I am now. After 20 years, I have a fix. It's not complete, I still have plenty of dark days, particularly during the two week UK spells. And it's not ideal by any means, I have to be away from wife and family and friends for a decent proportion of the winter, and it limits me to only bits and pieces of short term casual work through the winter so it is tough financially, I have to work very hard over the summer to make sure that I have enough funds available to see me through. But it is a fix. 
 
And it is a non-medical fix. I didn't need SSRIs, I simply needed it to no longer get dark at 3.30pm.
 
The other fix was also non-medical - the cognitive behavioural therapy. I again I'm not perfect by any means, I still can't handle networking events and I still sometimes get overwhelmed by social situations, but thanks to CBT and a bit of mindfulness I've gone from a completely incapable mess of social anxiety to now being a frequent international conference speaker, to crowds of up to 3000 people.
 
The worst thing that happened to me over those 20 years was being prescribed SSRIs. Not only the effect they had on me at the time, but I have pretty much permanent side effects - lost my sense of smell forever, terrible memory, apocalyptic nightmares. I've seen others talk about the same nightmares.. Seeing everyone you've ever met being slowly and brutally dismembered in vivid detail, against the backdrop of the world burning. So vivid that it takes a couple of days to recover and realise that it was in fact a dream. But I last had one of those nearly a year ago (15 years after coming off venlaflaxine...), so maybe now I've finally seen the back of them. I have no doubt at all that the reason I have had long term effects is due to the 300mg/0mg alternating that my incompetent doctor prescribed, followed by the full cold turkey.
 
So, as a med-free and now reasonably functioning human being, I can look back over the past 20 years and see a few clear lessons.
 
- Doctors are not to be trusted, they know very little about what SSRIs are capable of, what they should and should not be used for, and how to manage coming off them. They may have misdiagnosed you, and their instinctive reaction of what's needed to fix you might actually make you far worse.
 
- Anti depressants are a really brutal thing to put anyone through, more so than many illegal drugs. They should be used only as a last resort, after exhausting all other possible avenues. They must be tapered, coming off them the wrong way can damage you for life, as it has done to me in several ways. I have since seen others go through hell as a result of them too.
 
- Anti depressants do not 'correct chemical imbalances', they smash you in the head with a sledgehammer, giving you a chemical lobotomy in order to have a temporary holiday from negative thought cycles. You can use that holiday as an opportunity to address the causes, but the holiday itself is not a cure.
 
- There are many ways of treating symptoms of depression and anxiety. Anti depressants allowed me to socialise, but they did not treat my social anxiety, they just masked it. CBT treated it. Anti depressants stopped negative thought cycles, but they did not treat them, they just masked them. Light therapy treated them.
 
- Seasonal affective disorder is worth looking into, particularly if you live far from the equator. Even if it's just a partial contributor to your state of mind, getting some kind of treatment for it can be life changing. It's easy to miss a diagnosis, firstly as the symptoms are pretty much identical to regular clinical depression, and secondly if you're in a bad way in the winter it can also affect your life enough that you get symptoms in the summer too. Proper SAD lights are not cheap - £100/$150 - but it's worth a try. I am extremely fortunate in that I work as a contractor on short term jobs, which is what allows me to do the two week alternating thing, but even if you can just manage a little bit of time somewhere where the sun sets a bit later, it could still make a significant difference.
 
- CBT can be fantastic for anxiety, social anxiety in particular. If you live somewhere like the US where you have to pay for CBT, and can't afford to, get a decent self-help book (mine was "Overcoming Social Anxiety and Shyness: A Self-help Guide Using Cognitive Behavioural Techniques", by Gillian Butler) and do it yourself, the principles are straightforward.
 
- Friends and family are often unhelpful and sometimes harmful, but they are also hugely important.
 
In conclusion, have hope, progress is possible. Again, I hope something from all of the above is useful for you.

2001-2002 Venlafaxine 300mg (2 x 150mg double strength Efexor XL). Instructed by GP to reduce dosage by alternating between 300mg one day and 0mg the next, with predictable results. Managed that for approx 2 weeks, then to avoid suicide went full cold turkey.

2009-2015 Successful non-drug treatments - CBT for anxiety, light therapy for seasonal affective disorder.

2001-2015 ongoing withdrawal symptoms. Primarily apocalyptic nightmares that take a full day to recover from, also loss of smell and memory.

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I also learned something here. I thought SAD was a very mild condition. Your experiences point to a level of severity that I didn't know existed....so thank you for educating me.

 

Yes, absolutely, it can be severe, completely debilitating. It's a wide spectrum. From Mind:

 

"For some people, symptoms are fairly mild and last for a shorter period, mainly during December, January and February, and are known as the ‘winter blues’, or sub-syndromal SAD. A small percentage of people have very severe symptoms and find it hard to carry out day-to-day tasks in winter without continuous treatment."

 

http://www.mind.org.uk/information-support/types-of-mental-health-problems/seasonal-affective-disorder/#.VpzMsBWLTDc

 

The UK is a funny place for it.. it's common enough in the UK that people have often heard of it, but not common enough that there's real understanding, unlike for example Scandinavian countries.

2001-2002 Venlafaxine 300mg (2 x 150mg double strength Efexor XL). Instructed by GP to reduce dosage by alternating between 300mg one day and 0mg the next, with predictable results. Managed that for approx 2 weeks, then to avoid suicide went full cold turkey.

2009-2015 Successful non-drug treatments - CBT for anxiety, light therapy for seasonal affective disorder.

2001-2015 ongoing withdrawal symptoms. Primarily apocalyptic nightmares that take a full day to recover from, also loss of smell and memory.

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Would you consider contributing your long term symptoms to the new David Healy protracted w/drawal website? 

 

I can't submit anything unfortunately, comments and reporting are disabled across the site. I found that out after typing out a long comment, nice of them to let people know!! I won't be bothering to submit again, but feel free to copy anything across from this post on my behalf if you want to.

2001-2002 Venlafaxine 300mg (2 x 150mg double strength Efexor XL). Instructed by GP to reduce dosage by alternating between 300mg one day and 0mg the next, with predictable results. Managed that for approx 2 weeks, then to avoid suicide went full cold turkey.

2009-2015 Successful non-drug treatments - CBT for anxiety, light therapy for seasonal affective disorder.

2001-2015 ongoing withdrawal symptoms. Primarily apocalyptic nightmares that take a full day to recover from, also loss of smell and memory.

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No I can't, that's what I'm trying to say. It is not possible at the moment. David Healy has turned it off, no-one can report anything on the site. I lost a long post as a result, so I'm not inclined to keep checking back to see when it is fixed. So sorry, I've already tried and wasted lots of time as a result, it is technically impossible at the moment, and I will not be doing it in future either. If anyone else wants to check back on his site in a months time or whenever it is working again and submit it themselves, they're more than welcome to.

2001-2002 Venlafaxine 300mg (2 x 150mg double strength Efexor XL). Instructed by GP to reduce dosage by alternating between 300mg one day and 0mg the next, with predictable results. Managed that for approx 2 weeks, then to avoid suicide went full cold turkey.

2009-2015 Successful non-drug treatments - CBT for anxiety, light therapy for seasonal affective disorder.

2001-2015 ongoing withdrawal symptoms. Primarily apocalyptic nightmares that take a full day to recover from, also loss of smell and memory.

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Hello Schnozzle and what an incredible story! (complete with illustrations:)

 

It was wonderful to read that the story had/has a happy ending. That bit about alternating 300 mg of Effexor was horror but you bounced back and got on with your life.

 

Thank you so much for commenting on my attempt to use a lightbulb (although it has 20 000 lux I think).

 

Your description of SAD rings so many bells with me that I will take it a lot more seriously from now on. My husband saw me suffering last winter and suggested we move somewhere. This is getting worse as I'm getting older. I'm two different persons spring/summer and autumn/winter. And my father also struggled badly. As a matter of fact my husband is at the moment working in Asia in the non SAD affected area. Food for thought...

Current: 9/2022 Xanax 0.08, Lexapro 2

2020 Xanax 0.26 (down from 2 mg in 2013), Lexapro 2.85 mg (down from 5 mg 2013)

Amitriptyline (tricyclic AD) and clonazepam for 3 months to treat headache in 1996 
1999. - present Xanax prn up to 3 mg.
2000-2005 Prozac CT twice, 2005-2010 Zoloft CT 3 times, 2010-2013 Escitalopram 10 mg
went from 2.5 to zero on 7 Aug 2013, bad crash 40 days after
reinstated to 5 mg Escitalopram 4Oct 2013 and holding liquid Xanax every 5 hours
28 Jan 2014 Xanax 1.9, 18 Apr  2015 1 mg,  25 June 2015 Lex 4.8, 6 Aug Lexapro 4.6, 1 Jan 2016 0.64  Xanax     9 month hold

24 Sept 2016 4.5 Lex, 17 Oct 4.4 Lex (Nov 0.63 Xanax, Dec 0.625 Xanax), 1 Jan 2017 4.3 Lex, 24 Jan 4.2, 5 Feb 4.1, 24 Mar 4 mg, 10 Apr 3.9 mg, May 3.85, June 3.8, July 3.75, 22 July 3.7, 15 Aug 3.65, 17 Sept 3.6, 1 Jan 2018 3.55, 19 Jan 3.5, 16 Mar 3.4, 14 Apr 3.3, 23 May 3.2, 16 June 3.15, 15 Jul 3.1, 31 Jul 3, 21 Aug 2.9 26 Sept 2.85, 14 Nov Xan 0.61, 1 Dec 0.59, 19 Dec 0.58, 4 Jan 0.565, 6 Feb 0.55, 20 Feb 0.535, 1 Mar 0.505, 10 Mar 0.475, 14 Mar 0.45, 4 Apr 0.415, 13 Apr 0.37, 21 Apr 0.33, 29 Apr 0.29, 10 May 0.27, 17 May 0.25, 28 May 0.22, 19 June 0.22, 21 Jun updose to 0.24, 24 Jun updose to 0.26

Supplements: Omega 3 + Vit E, Vit C, D, magnesium, Taurine, probiotic 

I'm not a medical professional. Any advice I give is based on my own experience and reading. 

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Hello Schnozzle and what an incredible story! (complete with illustrations:)

 

It was wonderful to read that the story had/has a happy ending. That bit about alternating 300 mg of Effexor was horror but you bounced back and got on with your life.

 

Thank you so much for commenting on my attempt to use a lightbulb (although it has 20 000 lux I think).

 

Your description of SAD rings so many bells with me that I will take it a lot more seriously from now on. My husband saw me suffering last winter and suggested we move somewhere. This is getting worse as I'm getting older. I'm two different persons spring/summer and autumn/winter. And my father also struggled badly. As a matter of fact my husband is at the moment working in Asia in the non SAD affected area. Food for thought...

 

Ahhhh ok, by bulb I thought you meant something like this, which does nothing for SAD. Do you have a link to what kind of equipment you have? If it is 20,000 lux it'll most likely be a lightbox.

 

So I assume he is lonely out there and needs to bring you out there for a month or two?  ^_^

 

Something to bear in mind is that the 'safe' area is just safe if you live there all the time. If you're visiting somwhere temporarily in the winter the best place to go is actually further past the safe area and into the opposite hemisphere, where the evenings are (temporarily) as light as possible. So if you're in the northern hemisphere, you would likely get the greatest benefit from going to the southern end of south america, south africa, new zealand etc. The more hours of daylight, the better.

 

It really sank home for me when watching a famous gardener (Monty Don) on TV. He was mid conversation and just suddenly stopped talking. His shoulder slumped, his face slumped, his whole body looked like it had suddenly given up. He stood there for about a minute, not saying anything, just staring past the camera at the horizon. Then turned around, walked back to his house, and shut the door. That rang many bells with me, and it was indeed SAD that he was suffering with.

2001-2002 Venlafaxine 300mg (2 x 150mg double strength Efexor XL). Instructed by GP to reduce dosage by alternating between 300mg one day and 0mg the next, with predictable results. Managed that for approx 2 weeks, then to avoid suicide went full cold turkey.

2009-2015 Successful non-drug treatments - CBT for anxiety, light therapy for seasonal affective disorder.

2001-2015 ongoing withdrawal symptoms. Primarily apocalyptic nightmares that take a full day to recover from, also loss of smell and memory.

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Almost every day in November this year was sunny and we had lots of sun in December and now in January. So I thought that was enough. But you are right: things perceptibly change for me when we lose daylight after the day light saving time.

 

My lightbulb looks different but I don't think it is a good substitute for a light box. Unfortunately I don't have a link because I bought it in a store. If I'm able to board the plane om Friday I should be flying to South Africa for 3 weeks. So it will be a good opportunity to test the theory. I was there 3 years ago and of course felt great while I was there. 

 

I'm so scared to move anywhere right now. Although every winter I get extremely restless and start itching to go somewhere and change things about my life. But I'm equally scared of making things even worse and losing the relative security I have here. 

 

Thank you once again for sharing your experience.

Current: 9/2022 Xanax 0.08, Lexapro 2

2020 Xanax 0.26 (down from 2 mg in 2013), Lexapro 2.85 mg (down from 5 mg 2013)

Amitriptyline (tricyclic AD) and clonazepam for 3 months to treat headache in 1996 
1999. - present Xanax prn up to 3 mg.
2000-2005 Prozac CT twice, 2005-2010 Zoloft CT 3 times, 2010-2013 Escitalopram 10 mg
went from 2.5 to zero on 7 Aug 2013, bad crash 40 days after
reinstated to 5 mg Escitalopram 4Oct 2013 and holding liquid Xanax every 5 hours
28 Jan 2014 Xanax 1.9, 18 Apr  2015 1 mg,  25 June 2015 Lex 4.8, 6 Aug Lexapro 4.6, 1 Jan 2016 0.64  Xanax     9 month hold

24 Sept 2016 4.5 Lex, 17 Oct 4.4 Lex (Nov 0.63 Xanax, Dec 0.625 Xanax), 1 Jan 2017 4.3 Lex, 24 Jan 4.2, 5 Feb 4.1, 24 Mar 4 mg, 10 Apr 3.9 mg, May 3.85, June 3.8, July 3.75, 22 July 3.7, 15 Aug 3.65, 17 Sept 3.6, 1 Jan 2018 3.55, 19 Jan 3.5, 16 Mar 3.4, 14 Apr 3.3, 23 May 3.2, 16 June 3.15, 15 Jul 3.1, 31 Jul 3, 21 Aug 2.9 26 Sept 2.85, 14 Nov Xan 0.61, 1 Dec 0.59, 19 Dec 0.58, 4 Jan 0.565, 6 Feb 0.55, 20 Feb 0.535, 1 Mar 0.505, 10 Mar 0.475, 14 Mar 0.45, 4 Apr 0.415, 13 Apr 0.37, 21 Apr 0.33, 29 Apr 0.29, 10 May 0.27, 17 May 0.25, 28 May 0.22, 19 June 0.22, 21 Jun updose to 0.24, 24 Jun updose to 0.26

Supplements: Omega 3 + Vit E, Vit C, D, magnesium, Taurine, probiotic 

I'm not a medical professional. Any advice I give is based on my own experience and reading. 

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Yes absolutely, for me at least it is far less to do with the weather and far more to do with what time the sun sets. I hope the South Africa experience gives you some respite!

2001-2002 Venlafaxine 300mg (2 x 150mg double strength Efexor XL). Instructed by GP to reduce dosage by alternating between 300mg one day and 0mg the next, with predictable results. Managed that for approx 2 weeks, then to avoid suicide went full cold turkey.

2009-2015 Successful non-drug treatments - CBT for anxiety, light therapy for seasonal affective disorder.

2001-2015 ongoing withdrawal symptoms. Primarily apocalyptic nightmares that take a full day to recover from, also loss of smell and memory.

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Will let you know :) I've already sent your post to my husband!

Current: 9/2022 Xanax 0.08, Lexapro 2

2020 Xanax 0.26 (down from 2 mg in 2013), Lexapro 2.85 mg (down from 5 mg 2013)

Amitriptyline (tricyclic AD) and clonazepam for 3 months to treat headache in 1996 
1999. - present Xanax prn up to 3 mg.
2000-2005 Prozac CT twice, 2005-2010 Zoloft CT 3 times, 2010-2013 Escitalopram 10 mg
went from 2.5 to zero on 7 Aug 2013, bad crash 40 days after
reinstated to 5 mg Escitalopram 4Oct 2013 and holding liquid Xanax every 5 hours
28 Jan 2014 Xanax 1.9, 18 Apr  2015 1 mg,  25 June 2015 Lex 4.8, 6 Aug Lexapro 4.6, 1 Jan 2016 0.64  Xanax     9 month hold

24 Sept 2016 4.5 Lex, 17 Oct 4.4 Lex (Nov 0.63 Xanax, Dec 0.625 Xanax), 1 Jan 2017 4.3 Lex, 24 Jan 4.2, 5 Feb 4.1, 24 Mar 4 mg, 10 Apr 3.9 mg, May 3.85, June 3.8, July 3.75, 22 July 3.7, 15 Aug 3.65, 17 Sept 3.6, 1 Jan 2018 3.55, 19 Jan 3.5, 16 Mar 3.4, 14 Apr 3.3, 23 May 3.2, 16 June 3.15, 15 Jul 3.1, 31 Jul 3, 21 Aug 2.9 26 Sept 2.85, 14 Nov Xan 0.61, 1 Dec 0.59, 19 Dec 0.58, 4 Jan 0.565, 6 Feb 0.55, 20 Feb 0.535, 1 Mar 0.505, 10 Mar 0.475, 14 Mar 0.45, 4 Apr 0.415, 13 Apr 0.37, 21 Apr 0.33, 29 Apr 0.29, 10 May 0.27, 17 May 0.25, 28 May 0.22, 19 June 0.22, 21 Jun updose to 0.24, 24 Jun updose to 0.26

Supplements: Omega 3 + Vit E, Vit C, D, magnesium, Taurine, probiotic 

I'm not a medical professional. Any advice I give is based on my own experience and reading. 

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  • 4 months later...

great story well done,

I am off all meds 16 months I had been on olanzapine, Effexor zanex and assorted sleeping meds for approx 2 years.

Weaned off 375 mg effexor over two years, I had previously come off xanax, rivotrill and olazapine. Reinstated 75mg of effexor on the 22/12/16

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  • 3 months later...

 

 
I was asked in another thread (http://survivingantidepressants.org/index.php?/topic/11070-schnozzle-long-term-withdrawal-effects-on-sense-of-smell/?hl=%2Bsuccess+%2Bstories#entry203097) for a bit more detail on my experiences, particularly as I have now been off meds for a long time. So below is some info on the before meds, during, and after. I hope something from it will be useful for you.

So, starting out back in 1994, I was a high performing student, started having problems as a teenager and in 1998, at 18, had a pretty major breakdown and dropped out of school. 

 

Due to a combination of that and other general things like a typical family Christmas consisting of me coming downstairs for half an hour to sit in silence then go back upstairs to lock myself in my room and go to bed, my parents bundled me off to see a therapist. I just sat there with my arms folded not saying anything though, so that was the end of that. Lots of meaningless misery, continual suicidal thoughts, and some hand/arm/mouth self harm. Partially for a distraction, and partially because the pain gave me something that I 100% understood and had 100% control over.

 

So anyway, I started to rebuild again and went back to a different school the following year, and managed to cobble together enough grades to get into a second rate university.

 

I lasted there for a year before having an even bigger breakdown, everything spinning faster and faster and more out of control until my brain snapped and was no longer capable of anything at all. 

 
After a few weeks of gradually building up again to being able to do things like eat and leave the house I was told by the campus doctor that there might be depression and social anxiety involved, and due to the breakdown happening over winter it might be worth looking into seasonal affective disorder. But overall she said that the most important thing was to take some time out to recover and not come come back until I was ready.

 

A more pressing concern was being broke, so I ended up back in my home town, and luckily managed to get one of the few jobs in my field that existed there back then (web industry - this was in a seaside tourist town in 2000), and managed to get somewhere stable to live.

 

That lasted maybe six months, then I was made redundant, and everything crashed, and was prescribed venlaflaxine by my doctor. He said that as I was in such a mess I should be on the double strength (150mg capsules instead of the usual 75mg capsules) Efexor XL, and to be on the safe side I should take two of them per day, for a total of 300mg/day.

63521af1-2391-4d6f-810f-a38f009bed75_270

That made me vaguely functional, in no fit state to work but enough to be able to face seeing people again, so I got some degree of social life back. Online communities also helped, I don't expect anyone here will have heard of it but there was one called The Garage started by an excellent chap by the name of Kip Crosby that helped me enormously between the time of dropping out of school the first time and those Efexor days. 

 
The venlaflaxine carried on for about a year, with the usual cornucopia of extreme side effects, until one day in 2002 when sat in a bar I looked across at my friends. I watched them laughing and chatting and playing darts, and realised how long it had been since I had felt a real emotion or had a coherent chain of thought. I realised that all I had been going through was a chemical lobotomy to provide some relief from negative thought cycles, going through all the awful side effects in exchange for not actually addressing or solving anything.

So went to the doctor and told him I wanted to get off it. So he prescribed a plan of one day on,one day off... Alternating each day between 300mg and 0mg. Going through cold turkey every 48 hours had obvious effects, so after a couple of weeks I decided my doctor was an idiot and that I would have no further dealings with him, and as I couldn't handle any more of the 300/0 alternating without killing myself, I flushed the rest down the drain and went full cold turkey (DO NOT DO THIS. More on that later.).

 

Things were kind of OK for a bit after that, but soon enough I started heading back into the whirling vortex of doom and despair. I remembered the original university campus doctor suggesting that it might be seasonal, so I tried swapping my regular yellow lights for regular white ones, but that didn't make any difference. The whole seasonal affective disorder concept sounded like silly quackery to me anyway, so I just forgot about it, and carried on sinking.

 

Later that year I met someone very special, which brought me back to life again. At the end of the year she was heading off to university, so that gave me motivation to do the same. Managed to see it through this time, and three years later (2006) finished with top grades and landed a good job with the BBC.

 

But through all of this I was still in a bad way. While at university I couldn't really function at/face social events, which continued through into the workplace, having to run out of conferences, team-building exercises etc and flee home to recover from the trauma. Also all the other typical stuff like exhaustion, lack of interest in anything or anyone, carb cravings, weak immune system, despair, pointlessness, zero sleep pattern, etc. So for long periods of time a typical routine would be wake up exhausted, consume vast amounts of sugar and caffeine to try make myself productive enough to work, and after work consuming vast amounts of alcohol to get my brain to shut up.

 
Soon enough this ended up with make or break time with my relationship, so in 2009 I started making a more concerted effort to fix things. Thinking back to the original university doctor's mention of social anxiety, I read up on CBT and went through a self planned / self administered programme, which helped enormously with some of the issues. I'd recommend it to anyone. And took another look at the seasonal affective disorder thing, as even though I was in a haze and couldn't really remember things well enough to be able to properly analyse, I did have a feeling that I was worse in the winter. For example what I mentioned back at the start about family Christmases.
 
So unlike my previous misguided attempt, this time I did it properly and bought an actual proper SAD light (Philips HF3330, now discontinued), which was a revelation. Within a week of using it, I had changed completely. There cotton wool had been pulled out of my head, and the confusing haze turned into being able to look up and see the world again.
 
71PFy2cCS6L._SX425_.jpg
 
It wasn't perfect, and was only really useful in the first couple of months at the start of winter, but it was still the biggest difference since I was a teenager.
 
Then a few years later (2012) I heard that my mother and sister were planning on visiting New Zealand for Christmas. I had recently started contracting, meaning I worked on short term jobs for a range of companies and had full control over my time, if I wanted to take time out I was able to just stop taking on contracts for a while. So I decided to go along too, make it into a bit of a business trip with a longer stop over in Australia for a bit of work too, taking it up to a total of two months out there. This was because the seasons there are opposite to the UK. In December it doesn't get dark over there until 9pm, so I wanted to see if that made a difference.
 
It didn't just make a difference, for the time I was there I was completely cured. Of the below list of typical seasonal affective disorder symptoms, I had every single one of them apart from panic attacks and hypomania, and some of them to really extreme levels too. While in Australia, they all disappeared:
  • lack of energy for everyday tasks, such as studying or going to work
  • concentration problems
  • sleep problems
  • depression – feeling sad, low, tearful, guilty, like you have let others or yourself down; sometimes hopeless and despairing, sometimes
  • apathetic and feeling nothing
  • anxiety – tenseness and inability to cope with everyday stresses;
  • panic attacks
  • mood changes – in some people, bursts of hyperactivity and
  • cheerfulness (known as hypomania) in spring and autumn
  • overeating – particularly craving carbohydrates and putting on weight
  • being more prone to illness – some people with SAD may have a lowered immune system during the winter, and may be more likely to
  • get colds, infections and other illnesses
  • loss of interest in sex or physical contact
  • social and relationship problems – irritability or not wanting to see people; difficult or abusive behaviour
  • alcohol or drug abuse.
But the biggest difference was a really surprising one for me. As you get older it normally seems like each passing year goes by a bit quicker, but to my surprise, 2012 instead seemed twice as long as any previous year.
 
I figured out that it is because a very strong effect I have is lack of perception of time passing. So, if you picture that feeling that you have when your alarm goes off and you're fumbling around in a haze trying to hit the snooze button... when you're in that state it can be hard to tell whether a minute or ten minutes or an hour has passed. And that's the state I'm permanently in, that's as awake as I had ever been in the winter, including not being able to really say whether something happened a day, a week or a month ago.
 
So every year up to that point I had experienced 6 months of normal time (7-8 once I got the SAD light) and then a haze of indeterminate length. This was the first time I had ever experienced what 12 months felt like, so it felt like my life expectancy had doubled.
 
All of this finally 100% cemented the comment the campus doctor originally made back in 2000 about the possibility of seasonal affective disorder.
 
The following year I headed out to Australia again for a few months, with the same effect. But sadly continuing to do that was not sustainable, either financially, for my marriage (and presumably at some point family), with work, or socially. Which was tough. Finally finding a cure, and then having it ripped away through practical unfeasibility.
 
The only option left seemed to be to move to the equator, which meant two options: moving very far away from friends or family (e.g. Singapore) or moving somewhere closer to home but to somewhere where we would both have to give up our careers in tech and science. Neither of those had any appeal.
 
So for winter 2014 I came up with a last ditch attempt to avoid that. The plan involved a place called the Canary Islands off the cost of southern Morocco that is just on the borderline of the SAD 'safe' area, where the top dotted line crosses the west coast of Africa... 
map-of-areas-affected-by-sad.jpg
...but despite being so far away (1800 miles) has ludicrously cheap air fares (£70/$100 for return flights from London to Gran Canaria and back) and cheap accommodation too, so it would be feasible for me to alternate between there and the UK every two weeks for Nov/Dec/Jan/Feb.
 
The first two week trip out there was an abysmal failure, I spent the whole time sat on the edge of my bed staring at the corner. The second time I took my SAD light with me, and it worked. Essentially the daylight hours in the Canaries are about the same as the UK in Sept/Oct, and when the daylight levels are like that in the UK, using an SAD lightbox is enough for me to get by on.
 
So that's where I am now. After 20 years, I have a fix. It's not complete, I still have plenty of dark days, particularly during the two week UK spells. And it's not ideal by any means, I have to be away from wife and family and friends for a decent proportion of the winter, and it limits me to only bits and pieces of short term casual work through the winter so it is tough financially, I have to work very hard over the summer to make sure that I have enough funds available to see me through. But it is a fix. 
 
And it is a non-medical fix. I didn't need SSRIs, I simply needed it to no longer get dark at 3.30pm.
 
The other fix was also non-medical - the cognitive behavioural therapy. I again I'm not perfect by any means, I still can't handle networking events and I still sometimes get overwhelmed by social situations, but thanks to CBT and a bit of mindfulness I've gone from a completely incapable mess of social anxiety to now being a frequent international conference speaker, to crowds of up to 3000 people.
 
The worst thing that happened to me over those 20 years was being prescribed SSRIs. Not only the effect they had on me at the time, but I have pretty much permanent side effects - lost my sense of smell forever, terrible memory, apocalyptic nightmares. I've seen others talk about the same nightmares.. Seeing everyone you've ever met being slowly and brutally dismembered in vivid detail, against the backdrop of the world burning. So vivid that it takes a couple of days to recover and realise that it was in fact a dream. But I last had one of those nearly a year ago (15 years after coming off venlaflaxine...), so maybe now I've finally seen the back of them. I have no doubt at all that the reason I have had long term effects is due to the 300mg/0mg alternating that my incompetent doctor prescribed, followed by the full cold turkey.
 
So, as a med-free and now reasonably functioning human being, I can look back over the past 20 years and see a few clear lessons.
 
- Doctors are not to be trusted, they know very little about what SSRIs are capable of, what they should and should not be used for, and how to manage coming off them. They may have misdiagnosed you, and their instinctive reaction of what's needed to fix you might actually make you far worse.
 
- Anti depressants are a really brutal thing to put anyone through, more so than many illegal drugs. They should be used only as a last resort, after exhausting all other possible avenues. They must be tapered, coming off them the wrong way can damage you for life, as it has done to me in several ways. I have since seen others go through hell as a result of them too.
 
- Anti depressants do not 'correct chemical imbalances', they smash you in the head with a sledgehammer, giving you a chemical lobotomy in order to have a temporary holiday from negative thought cycles. You can use that holiday as an opportunity to address the causes, but the holiday itself is not a cure.
 
- There are many ways of treating symptoms of depression and anxiety. Anti depressants allowed me to socialise, but they did not treat my social anxiety, they just masked it. CBT treated it. Anti depressants stopped negative thought cycles, but they did not treat them, they just masked them. Light therapy treated them.
 
- Seasonal affective disorder is worth looking into, particularly if you live far from the equator. Even if it's just a partial contributor to your state of mind, getting some kind of treatment for it can be life changing. It's easy to miss a diagnosis, firstly as the symptoms are pretty much identical to regular clinical depression, and secondly if you're in a bad way in the winter it can also affect your life enough that you get symptoms in the summer too. Proper SAD lights are not cheap - £100/$150 - but it's worth a try. I am extremely fortunate in that I work as a contractor on short term jobs, which is what allows me to do the two week alternating thing, but even if you can just manage a little bit of time somewhere where the sun sets a bit later, it could still make a significant difference.
 
- CBT can be fantastic for anxiety, social anxiety in particular. If you live somewhere like the US where you have to pay for CBT, and can't afford to, get a decent self-help book (mine was "Overcoming Social Anxiety and Shyness: A Self-help Guide Using Cognitive Behavioural Techniques", by Gillian Butler) and do it yourself, the principles are straightforward.
 
- Friends and family are often unhelpful and sometimes harmful, but they are also hugely important.
 
In conclusion, have hope, progress is possible. Again, I hope something from all of the above is useful for you.

 

i did the same thing, with effexor and was on the same dosage as you were, also went cold turkey, and reading that 15 years later you still have side effects is really scary... i can really see that this is me in the future. i could deal with lost of my smell sence forever and nightmares, but memory problems that leasts forever is just too much... that just tears my healing expectetions apart, i have been dealing with paresthesia for a whole YEAR now and that just show me that i might be facing some permanent issues... oh boy this is like a living nightmare

(i'm brazlian so please, ignore spelling mistakes) 2015 the beggining of the year started with effexor xr 37,5

went up to 300mgs

in october of 2015 quitted COLD TURKEY/took olanzapine 5mgs for 2 weeks around november/ reinstated effexor in january of 2016

in march of 2016 was at 300mg again

in may tappered effexor xr and added trazodone 150mgs, seroquel 50mgs and abilify 10 mgs/in july cold turkey from abilify (no big deal)

in september tried reducing trazadone to 50mg

after 2 weeks went back to 150mgs of trazadone and 50 mgs of seroquel and added 2 mgs of klonopin to use WHEN NEEDEED

currently taking 150mgs of trazadone and 50 mgs of seroquel at night

 

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  • 1 year later...

For some strange reason I feel better when it is dark at night. Do I have reverse SAD?

Early 1980s 2 mg. vallium prn; Mid-1990s Paxil and 2mg. vallium prn; Somewhere in there Buspar

Early 2000s Sertaline 50 mg. and .25mg Xanax prn 

2008 Sertaline 50 mg but Xanax was increased to .5mg 6 times a day 

2015 Sertaline increased to 100mg. 2 mg. vallium prn and Wellburtrin (only on a few days)

April 2016 Venlafaxine XR 225mg with 50 mg. Zolft  and 10 mg. Vallium 3 times a day as needed

Fall 2017 Venlafaxine upped to 300 mg - 5 mg. Vallium 3 times a day prn; Jan. 2018 Venlafaxine 225mg w/Vallium

April 2018 weaned  to 187.50mg, 150mg, 112.5 mg at 4 to 5 week intervals vallium 3 times a day prn

July 2018 112.5 mg ; July 2018 started SA's 10% guideline w/ 2.5 vallium prn; lost notes  dropped to 89 mg by 10/22; 89 mg 10/29; 10/6 86 mg, 10/13 83 mg; 10/20 - 11/2 updosed to 89mg; 11/3 86 mg; 11/17 80 mg. 11/24 77mg - 12/20 80mg 1/ 20 77 mg venlafaxine; 2/19 75 mg Ven  still taking vallium 2.5 mg morning, after and evening

Simvastatin 40mg. daily with supplements: Magnesium, Omega Fatty Oils, Vitamin D3, Turmeric, Magnesium, 25 mg. to 50 mg. diphendramine for sleep

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  • 3 months later...
  • Moderator Emeritus

Hi there,

 

The staff at SA are wondering how you are.  We'd love to hear how you are doing now.   Would you mind dropping by and giving an update?

 

Thanks.

CC

* NO LONGER ACTIVE on SA *

MISSION ACCOMPLISHED:  (6 year taper)      0mg Pristiq  on 13th November 2021

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering from Oct 2015 - 13 Nov 2021   LAST DOSE 0.0025mg

Post 0 updates start here    My tapering program     My Intro (goes to tapering graph)

 VIDEO:   Antidepressant Withdrawal Syndrome and its Management

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