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Laura1981

Did you report your side effects? How did you find the process?

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Laura1981

Hey all, 

 

just out of personal curiosity: 

 

Did everybody report their side effects to the authorities (FDA, Yellow Card Scheme etc)? How did you find the process? Did you update the agencies how long your condition lasted? 

 

If you didn't report, what put you off?  

 

I reported mine to the Irish Medicines agency, but I found the process quite awful. I had to give my real name and address along with sensitive information and quite horrific, psychiatric & physical symptoms. I can see why people would be put off reporting. 

 

I tested the FDA reporting process. I found it much better. You can actually select a country other than the US and submit your report. So this might be an option for everybody who refuses to give their real name and address. 

 

I think reporting our side effects is one of the most important steps towards getting our condition recognized. Doctors certainly won't report the side effects for us. So just appealing to everyone who hasn't done it yet. 

 

Go for it and report! 

 

Cheers, 

 

Laura

 

PS: Here's the post with the instructions how to report: http://survivingantidepressants.org/index.php?/topic/363-report-your-withdrawal-symptoms-to-government-agencies/

 

 

 

 

 

 

 

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oskcajga

Hey all, 

 

just out of personal curiosity: 

 

Did everybody report their side effects to the authorities (FDA, Yellow Card Scheme etc)? How did you find the process? Did you update the agencies how long your condition lasted? 

 

If you didn't report, what put you off?  

 

I reported mine to the Irish Medicines agency, but I found the process quite awful. I had to give my real name and address along with sensitive information and quite horrific, psychiatric & physical symptoms. I can see why people would be put off reporting. 

 

I tested the FDA reporting process. I found it much better. You can actually select a country other than the US and submit your report. So this might be an option for everybody who refuses to give their real name and address. 

 

I think reporting our side effects is one of the most important steps towards getting our condition recognized. Doctors certainly won't report the side effects for us. So just appealing to everyone who hasn't done it yet. 

 

Go for it and report! 

 

Cheers, 

 

Laura

 

PS: Here's the post with the instructions how to report: http://survivingantidepressants.org/index.php?/topic/363-report-your-withdrawal-symptoms-to-government-agencies/

 

I just submitted my report to the FDA.  It happened 2 years ago, so I doubt it will hold much weight.  Thanks for this.

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oskcajga

I also filed a complaint against my old sleazy Psychiatrist for his negligent and injurious behavior to the California State Board.  I doubt anything will come of this, but maybe at the very least, he'll get bothered by it.

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Laura1981

Thanks so much for reporting! I think every single report makes a difference. The more reports they get the less they can say "oh, withdrawal doesn't last more than two months" or "these are edge cases". 

 

I was trying to make a badge, so that we can put it in our signature, but my image editing skills are awful: :( 

 

 badge.png

 

I also complained about my doctor with the medical board. I just got a letter saying "they don't see any further action necessary". No explanation, nothing. I could explode!!! 

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oskcajga

Thanks so much for reporting! I think every single report makes a difference. The more reports they get the less they can say "oh, withdrawal doesn't last more than two months" or "these are edge cases". 

 

I was trying to make a badge, so that we can put it in our signature, but my image editing skills are awful: :(

 

 badge.png

 

I also complained about my doctor with the medical board. I just got a letter saying "they don't see any further action necessary". No explanation, nothing. I could explode!!! 

 

Hahaha, the text needs to be a little bit bigger.

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Laura1981

Hmmmm, I made it bigger but this is the limit of what the signature allows...I wish I had spent my time learning paint shop instead of frying my brain with ADs

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oskcajga

Hmmmm, I made it bigger but this is the limit of what the signature allows...I wish I had spent my time learning paint shop instead of frying my brain with ADs

 

hahaha, yeah I could have been so much more productive if I had just done something silly instead of frying my brain with ADs

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Laura1981

Well, for the moment we have to live with our brains sadly ;-)....

 

@all: If anyone wants the icon until we find someone who is better with paintshop than me: 

 

Just go to your signature, click on the "image" button (the little tree) and paste this URL: http://s12.postimg.org/i5dcg7njd/badge4.png

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nz11

I have complained and raised a voice in all possible areas.

Turned up in person to complain to a psychiatrist...got totally dismissed and belittled and 2 years later request the report only to find out he diagnosed me with stress well that was news to me and blamed low testosterone on stress. What a right so and so. He claimed he had never heard of pssd. yeah right.

 

Basically its all fallen on deaf ears .

 

Mind you i turned up in person to tell my ex doc (Dr Wong) i would be making a complaint about him and that he should try some of his own medicine and if not then he would be wise to go through his books and get everyone off this paxil and its evil cousin poisons.

He trashed me in his report he was forced to write however i note in the local paper he appeared about 6 weeks later in this article...maybe complaining did some good afterall...not that these people would admit anything

http://www.times.co.nz/news/pill-popping-ends.html

Finally Dr Wrong did something right!!

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Laura1981

Wow, so sorry all your concerns were dismissed. Shame on your psychiatrist. I think complaining to doctors is likely to fail because as far as they are concerned, their poisons are safe. 

 

The authority responsible for medication safety was quite responsive. I regularly email them to update that I'm still sick. I hope they update my case file. 

 

Did you report your case here: https://nzphvc.otago.ac.nz/report/

 

I just recently got hold of some data from the European pharmacovigilance showing very few reports of withdrawal reactions. Out of those, most had no duration filled out, meaning they have no idea how long people are suffering. They clearly are not following up with people.

 

The problem is: What doesn't appear in the data doesn't exist. 

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Pandora

I have complained and raised a voice in all possible areas.

Turned up in person to complain to a psychiatrist...got totally dismissed and belittled and 2 years later request the report only to find out he diagnosed me with stress well that was news to me and blamed low testosterone on stress. What a right so and so. He claimed he had never heard of pssd. yeah right.

 

Basically its all fallen on deaf ears .

 

Mind you i turned up in person to tell my ex doc (Dr Wong) i would be making a complaint about him and that he should try some of his own medicine and if not then he would be wise to go through his books and get everyone off this paxil and its evil cousin poisons.

He trashed me in his report he was forced to write however i note in the local paper he appeared about 6 weeks later in this article...maybe complaining did some good afterall...not that these people would admit anything

http://www.times.co.nz/news/pill-popping-ends.html

Finally Dr Wrong did something right!!

 

That is so great.  Even if he did the article for other reasons (ego, position, etc.) it's likely that his experience with you had an effect.  Good for you.

 

I am dealing with a new, very young doctor who I think is cooperating with my liquid taper because she just doesn't understand it, but I am grateful.  She asked me recently what my "end date" was, and I said it depended on how I felt, if all went smoothly, so maybe a year give or take, impossible to predict.  She crinkled up her nose and laughed and said "My goodness, that's the slowest taper I've ever heard of!"  

 

But... I think it might stick and the next time she has someone come in with symptoms from trying to get off psyche drugs she might remember me. It's all a trickle effect....slowly there's an awakening.  Too slowly, maybe, but we gotta work with what's out there, I guess.

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buggedout

 

I have complained and raised a voice in all possible areas.

Turned up in person to complain to a psychiatrist...got totally dismissed and belittled and 2 years later request the report only to find out he diagnosed me with stress well that was news to me and blamed low testosterone on stress. What a right so and so. He claimed he had never heard of pssd. yeah right.

 

Basically its all fallen on deaf ears .

 

Mind you i turned up in person to tell my ex doc (Dr Wong) i would be making a complaint about him and that he should try some of his own medicine and if not then he would be wise to go through his books and get everyone off this paxil and its evil cousin poisons.

He trashed me in his report he was forced to write however i note in the local paper he appeared about 6 weeks later in this article...maybe complaining did some good afterall...not that these people would admit anything

http://www.times.co.nz/news/pill-popping-ends.html

Finally Dr Wrong did something right!!

 

That is so great.  Even if he did the article for other reasons (ego, position, etc.) it's likely that his experience with you had an effect.  Good for you.

 

I am dealing with a new, very young doctor who I think is cooperating with my liquid taper because she just doesn't understand it, but I am grateful.  She asked me recently what my "end date" was, and I said it depended on how I felt, if all went smoothly, so maybe a year give or take, impossible to predict.  She crinkled up her nose and laughed and said "My goodness, that's the slowest taper I've ever heard of!"  

 

But... I think it might stick and the next time she has someone come in with symptoms from trying to get off psyche drugs she might remember me. It's all a trickle effect....slowly there's an awakening.  Too slowly, maybe, but we gotta work with what's out there, I guess.

 

 

That's because the tapers she's heard of simply don't work.

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buggedout

OP,

 

I have not reported my symptoms basically because I have assumed it won't go anywhere.

 

But you have convinced me that it's still the right thing to do.

 

If I can find a way to do so anonymously, then I will indeed get on it. I will report to the FDA.

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nz11

OP,

 

I have not reported my symptoms basically because I have assumed it won't go anywhere.

 

But you have convinced me that it's still the right thing to do.

 

If I can find a way to do so anonymously, then I will indeed get on it. I will report to the FDA.

Good for you ...as i always say 'silence is not acceptance' so lets speak out.

Thankyou for raising a voice.

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Laura1981

OP,

 

I have not reported my symptoms basically because I have assumed it won't go anywhere.

 

But you have convinced me that it's still the right thing to do.

 

If I can find a way to do so anonymously, then I will indeed get on it. I will report to the FDA.

 

Thank you so much Buggedout. I know it feels that our reports don't go anywhere. You might be right for the moment.

 

I'm just convinced that at some stage, if there's enough noise made, someone will pull a report from these adverse event databases and say "Well... the data shows no problem. What's not measurable doesn't exist". 

 

That's why I think every single adverse reaction report and every single "Hey, I'm still sick" email counts. 

 

I know what you mean about privacy. I found putting my name on that adverse event report a bitter pill to swallow. But on they other hand: I'm a real person and they really hurt me. I'm happy to put my name on that report. I am hoping that the FDA looks after patient confidentiality. If not, that would be worth a front page article. 

 

 

 

Good for you ...as i always say 'silence is not acceptance' so lets speak out.

Thankyou for raising a voice.

 

Exactly nz11! Let's make some noise. 

 

I'm determined to annoy every government official I can find with a flood of emails. 

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oskcajga

 

OP,

 

I have not reported my symptoms basically because I have assumed it won't go anywhere.

 

But you have convinced me that it's still the right thing to do.

 

If I can find a way to do so anonymously, then I will indeed get on it. I will report to the FDA.

 

Thank you so much Buggedout. I know it feels that our reports don't go anywhere. You might be right for the moment.

 

I'm just convinced that at some stage, if there's enough noise made, someone will pull a report from these adverse event databases and say "Well... the data shows no problem. What's not measurable doesn't exist". 

 

That's why I think every single adverse reaction report and every single "Hey, I'm still sick" email counts. 

 

I know what you mean about privacy. I found putting my name on that adverse event report a bitter pill to swallow. But on they other hand: I'm a real person and they really hurt me. I'm happy to put my name on that report. I am hoping that the FDA looks after patient confidentiality. If not, that would be worth a front page article. 

 

 

 

Good for you ...as i always say 'silence is not acceptance' so lets speak out.

Thankyou for raising a voice.

 

Exactly nz11! Let's make some noise. 

 

I'm determined to annoy every government official I can find with a flood of emails. 

 

 

That's a good idea - but perhaps hard paper mail will be more effective.  Emails can be simply deleted but having 200 letters is more difficult to ignore.

 

There are somewhat effective strategies at doing this sort of thing - perhaps look to organizations that have a reputation for "getting their messages across" for inspiration.  I can't think of any off the top of my head - because my frontal lobes are like 50% anesthetized because of the medication side effects, but I'm sure we can collectively come up with a good "get our message across without harassing" idea.

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Laura1981

 

That's a good idea - but perhaps hard paper mail will be more effective.  Emails can be simply deleted but having 200 letters is more difficult to ignore.

 

There are somewhat effective strategies at doing this sort of thing - perhaps look to organizations that have a reputation for "getting their messages across" for inspiration.  I can't think of any off the top of my head - because my frontal lobes are like 50% anesthetized because of the medication side effects, but I'm sure we can collectively come up with a good "get our message across without harassing" idea.

 

I'm trying to kick something like that off. We're trying email first, just for speed's sake, but maybe letters in the future: 

http://survivingantidepressants.org/index.php?/topic/9308-europeans-take-action-with-letter-madneess/

 

It's proving kinda hard to organize because people are suffering so much that their capacity for letter writing is often reduced. 

 

Other ideas would be a social media campaign with something like the ice bucket challenge. But I think the base for any kind of action is really that the problem is visible in the adverse reaction statistics. Any company I've worked for followed the principle "What we can't measure doesn't exist". I assume when it comes to the damage caused by psych drugs, opinions will be similar: If the data doesn't show a problem, there is no problem. 

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oskcajga

 

 

That's a good idea - but perhaps hard paper mail will be more effective.  Emails can be simply deleted but having 200 letters is more difficult to ignore.

 

There are somewhat effective strategies at doing this sort of thing - perhaps look to organizations that have a reputation for "getting their messages across" for inspiration.  I can't think of any off the top of my head - because my frontal lobes are like 50% anesthetized because of the medication side effects, but I'm sure we can collectively come up with a good "get our message across without harassing" idea.

 

I'm trying to kick something like that off. We're trying email first, just for speed's sake, but maybe letters in the future: 

http://survivingantidepressants.org/index.php?/topic/9308-europeans-take-action-with-letter-madneess/

 

It's proving kinda hard to organize because people are suffering so much that their capacity for letter writing is often reduced. 

 

Other ideas would be a social media campaign with something like the ice bucket challenge. But I think the base for any kind of action is really that the problem is visible in the adverse reaction statistics. Any company I've worked for followed the principle "What we can't measure doesn't exist". I assume when it comes to the damage caused by psych drugs, opinions will be similar: If the data doesn't show a problem, there is no problem. 

 

 

Yeah, it's the perfect crime because the victims are often left in such an incapacitated, non-functional state that unless they have a bunch of $$$$ and can hire high powered attorneys, there's not a lot of power that the patients really have :(

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Laura1981

Yeah, it's the perfect crime because the victims are often left in such an incapacitated, non-functional state that unless they have a bunch of $$$$ and can hire high powered attorneys, there's not a lot of power that the patients really have :(

 

And that's what I want to fight.... I remember a couple of years back someone asked me why am I not politically active. I said "well, you know....everything seems to be working. There's not much to fight for. We live in democracy, everybody has a home, enough food, good healthcare" (at least where I lived)

 

Now I know this is a lie. People get poisoned and tortured with toxic drugs. I have a friend who suffered a marijuana induced psychosis. Now I realize that his whole life didn't have to go down the drain as it did. He didn't have to suffer like that and become permanently disabled. I didn't understand this before.

 

Now I have something to fight for. I guess I had to experience this injustice personally to realize what's going on. 

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HalfPerson

A few months into Citalopram I complained to my doc about the sexual and *sweaty* side effects. As I was also on a low dose of Propranolol (which I took 'as and when') he poo-pooed the idea and said it was the Propranolol...which I hardly used as I didn't really need to anymore. Deaf ears and a stern face.

 

However, earlier this year, I saw the SAME doctor and his tune had changed entirely. He was desperate to hear what I had to say about the after effects of the SSRIs and the PSSD I had. And I got referred to a diabetes doc* who also specialises in arousal disorders...which took months...and when I finally got my appointment, that doc was off sick and I got a diabetes doc who basically said sorry for wasting my time and to go back to my doc to get re-referred to the doc I should have been seeing in the first place...months of wasted time! I got re-referred yesterday. More months. See you in 2016, arousal doc!

 

One good thing though...my doctor changed his mind. I think people are starting to listen now. That was kind of nice. :)

 

*I don't have diabetes, by the way. My bloods were brilliant. I'm fit as a fiddle lol. It's maddening!

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Laura1981

That is so good to hear! You're really lucky. I think you're the third person I hear from who found a doctor who believes them (out of hundereds I heard from). Does he believe in prolonged withdrawal? Maybe he could go on the recommended doctors list....

 

Did your doctor report the issue to the Yellow Card Scheme for you? If not, would you do it? 

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HalfPerson

I'm not sure we have the Yellow Card Scheme in the UK but I'll mention it to him next time I go see him. It's almost impossible to get an appointment at the moment, another doctor re-referred me by phone yesterday as they had no appointments at all. It's frustrating!

 

It was nice to see a doctor change his opinion as a lot of docs I've seen just dole out the meds with no real idea what side effects they can have. He did mention that he'd seen others with similar issues and was 'aware of the problem'. The earlier time I went to see him in 2011/2012, the only option I was really given was to swap my SSRI to a different antidepressant. I'm not sure he knows about protracted withdrawal but I get a sense a lot of people are getting cynical about SSRI use and it's finally rubbing off on some of the docs...which is good. We're not there yet but any ground gained is always good.

 

But when I get in to see him next, and as he's receptive now, I'll have a jolly good chat about things with him. ;)

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Laura1981

Great, I'll be curious to hear what he says about protracted withdrawal. It's really good to hear that some doctors are getting it. I think I caused a bright moment in my GP too. I think he's getting closer and closer to believing me. 

 

Here's the yellow card scheme. In case your doctor doesn't report, you can: 

https://yellowcard.mhra.gov.uk/

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HalfPerson

Thanks for the link Laura, I will take a look. ;)

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