Jump to content
Noloft

Shipko, Healy, RxISK and Mad in America/activism

Recommended Posts

Noloft

So much of what I have seen from the likes of Shipko and Healy regarding akathisia like symptoms as well as PSSD is absolutely terrifying. The only thing keeping me going right now is hope that one day I will have a window and my symptoms will lessen. I have to keep repeating to myself almost every minute that nothing is permanent, I can't be this way forever. But then I see things that Shipko and Healy have mentioned on RxISK and MIA and it is so despairing that I spiral into a darker place. I am going to try to avoid these sites from now on as they are not bringing me any good news and are not doing me any good.

 

Shouldn't these pages be spreading hope rather than despair regarding PSSD and akathisia and withdrawal? Where does Dr. Healy get his proof that genital numbness can be permanent? How can he make that claim when there really can't be any way to determine permanent damage? And if he is just being realistic, what good does that do to someone in the throes of all of this? 

 

Why haven't those suffering from PSSD/ withdrawal in the states banded together for a march on Washington or something? A hunger strike outside of Pfizer or for UK members GSK HQ? Heck, if people want the research to be done into remedying this problem, wouldn't a drastic move like a massive hunger strike be an impetus for change? If all of the US members well enough to travel picked a week to sit outside of Pfizer HQ in New York, some kind of press would be made into this situation we are all in. Maybe I am just overly optimistic but I believe a massive group of people suffering showing up outside of Pfizer and refusing to eat until they decide to start researching how they can reverse the adverse effects their medications can cause would be a better use of our suffering than just waiting it out until we are whole again. Or at least, getting them to first admit that thier drugs can actually do harm would be a step in the right direction. I would be more than willing to organize such an event.

 

I would like to know others thoughts on all of this.

 

 

 

 

Share this post


Link to post
Share on other sites
1Day

I think Dr Healey's view may have changed a bit in the past years or so.  I know if you look at things he wrote years back, he often referred to PSSD as being a seemingly permanent condition.  But in more recent articles etc. he seems to acknowledge that people can and do recover albeit something that takes a long time.  I suspect he probably now knows people that have recovered; I know for sure there have been a couple of people comment on his blog posts that have recovered.  He often compares PSSD to tardive dyskinesia, a condition which is quite often referred to as being permenent; however a academic study from a year or so ago which followed about 5 or 6 people with the condition long-term, showed that they all recovered eventually.  I think what Dr. Healey is doing - standing up against the medical establishment etc. - is fantastic and I really admire him for it.  But I do feel the Rxisk site is of a very negative nature; not in terms of what they are trying to achieve, but in terms of the perceived message from past articles on the site and the continuing cycle of comments from readers that reinforces negativity, to the extent that when people who have recovered write a comment about their recovery, it seems they are almost either ignored or disbelieved.  

 

I think there is a very good chance within the next few years or so, that something like you describe will happen i.e. people coming together and taking action.  There are simply too many people out there suffering and with the powers of the internet/social media etc. I think it is only time before something big happens.   

Share this post


Link to post
Share on other sites
Rosetta

None of this is permanent.  The reason the symptoms seem to be permanent is that doctors keep trying to treat them with substances that the person's nervous system cannot tolerate.  Instead of reinstating the drug the body needs at a very, very low dose, the doctors switch the drug, prescribe drugs in amounts that a normal nervous system can handle (usually handle that's is) and discontinue the drugs the person's brain has become dependent upon to function.  The destabilization or dysautonomia is exacerbated by these attempts to "treat" the illness.  

 

No research or thought is put into how to treat these symptoms.  The doctors are using differential diagnosis - try this, try that, until something works.  Differential diagnosis essentially the absolute worst way to treat dysautonomia.  It adds fuel to the fire as it is further damaging the sensitive nervous system of the person who suffers from dysautonomia.  Differential diagnosis is basically witchcraft except that at some point witchcraft was better than differential diagnosis.  "Do no harm" is ignored for most patients in today's world.  There is almost no consideration given to that concept when it comes to psychiatric care, and that has been true for essentially the entire history of psychiatric care since the 60s.

 

I can see from your signature @Noloft that you have been put on and taken off of drug after drug after drug.  The last time you had to quit a drug was in April of 18.   It is far too early to think about permanent PSSD.  I'm sure it's very upsetting to be dealing with that.  If you can travel and organize a protest you are doing better than I am.  Because of that I think you will be fine, and all of this will be bad memory someday.  After quitting a very high dose of Zoloft it is going to take some time to get back to normal, but it's very encouraging that you are able to travel and plan so soon.  Amazing.

Share this post


Link to post
Share on other sites
Altostrata
15 minutes ago, Rosetta said:

None of this is permanent.  The reason the symptoms seem to be permanent is that doctors keep trying to treat them with substances that the person's nervous system cannot tolerate.

 

Very good point, Rosetta.

 

Clinicians are not used to following patients for many years, when they see something lasting more than a year, to them, it's "permanent." We take a much longer view here.

Share this post


Link to post
Share on other sites
Noloft
6 hours ago, 1Day said:

I think Dr Healey's view may have changed a bit in the past years or so.  I know if you look at things he wrote years back, he often referred to PSSD as being a seemingly permanent condition.  But in more recent articles etc. he seems to acknowledge that people can and do recover albeit something that takes a long time.  I suspect he probably now knows people that have recovered; I know for sure there have been a couple of people comment on his blog posts that have recovered.  He often compares PSSD to tardive dyskinesia, a condition which is quite often referred to as being permenent; however a academic study from a year or so ago which followed about 5 or 6 people with the condition long-term, showed that they all recovered eventually.  I think what Dr. Healey is doing - standing up against the medical establishment etc. - is fantastic and I really admire him for it.  But I do feel the Rxisk site is of a very negative nature; not in terms of what they are trying to achieve, but in terms of the perceived message from past articles on the site and the continuing cycle of comments from readers that reinforces negativity, to the extent that when people who have recovered write a comment about their recovery, it seems they are almost either ignored or disbelieved.  

 

I think there is a very good chance within the next few years or so, that something like you describe will happen i.e. people coming together and taking action.  There are simply too many people out there suffering and with the powers of the internet/social media etc. I think it is only time before something big happens.   

 

1day,

 

why do  you think it will take a few years? I feel the resources are available and the people are willing, why do you think no one has tried to do something right now? 

Share this post


Link to post
Share on other sites
Noloft
4 minutes ago, Altostrata said:

 

Very good point, Rosetta.

 

Clinicians are not used to following patients for many years, when they see something lasting more than a year, to them, it's "permanent." We take a much longer view here.

 

Alto,

 Would this account for why Dr. Healy has claimed permanent dysfunction? He just has not followed enough patients for a long enough time to see any results to the contrary? 

Share this post


Link to post
Share on other sites
Altostrata

Could be. Also, he may see cases where PSSD has lasted much longer.

 

These things tend to resemble a normal curve, where there may be a tail of extreme cases way out on the right side that represent a tiny minority of cases. Like human height -- there are people who are over 8 feet tall, but there are very few of them. Most people are in the middle.

Share this post


Link to post
Share on other sites
1Day
1 hour ago, Noloft said:

 

1day,

 

why do  you think it will take a few years? I feel the resources are available and the people are willing, why do you think no one has tried to do something right now? 

Because I think these things are not easy for people to openly admit to in society.  If you took a pill for headaches or an upset stomach and it made your right foot feel numb, you would happily go into work and tell your colleagues 'oh you won't believe what those headache pills have done to me'.  But people who take an anti-depressant and then suffer PSSD are not going to go into work and say 'hey, I have been taking anti-depressants and now they have caused me sexual dysfunction'.  People still don't like talking openly about mental health, and sexual dysfunction is certainly not something people openly talk about. 

 

So I still think we are a little bit of time away before people feel that there is enough support around them to be able to really stand up to the people responsible for all of this.  It is hard for people when most doctors and other medical people don't believe any of this is true, or at least not prepared to admit it.  If people arranged some major protest like you suggest, who would the powers that be believe: the people protesting or the medical establishment?  I would guess the medical establishment.  So that is what I mean by more support: more evidence and people getting on bored with the likes of this website, Dr. Healey, and what he is trying to do, media exposure etc.  I think that with a bit more time, there will be enough of a 'buzz' and enough real evidence provided by multiple sources and enough people working together, for something to really be done.  

 

Share this post


Link to post
Share on other sites
1Day
1 hour ago, Altostrata said:

Could be. Also, he may see cases where PSSD has lasted much longer.

 

These things tend to resemble a normal curve, where there may be a tail of extreme cases way out on the right side that represent a tiny minority of cases. Like human height -- there are people who are over 8 feet tall, but there are very few of them. Most people are in the middle.

I know of a case where the person recovered after 11-12 years.  That shows the scale of recovery time.  And of course, it is very easy for somebody to believe after 5 years that it is permanent (and many seem convinced after 1 or 2 years).  But many of the recovery stories you read about are in the 2-6 year range.   

Share this post


Link to post
Share on other sites
Altostrata

That's exactly right, 1Day. But we don't have real statistics, so all we can say is "be patient."

Share this post


Link to post
Share on other sites
Noloft

Understood.

 

Have you seen cases of recovery on this site from people who were placed on the medicine during puberty, basically growing up with it in their system?i was placed on Zoloft at the age of 11. Minor sexual problems on, though I didn’t know it because I never had a measuring stick for normalcy. Severe problems after rapid taper. 

Share this post


Link to post
Share on other sites
Noloft

1day,

 

i am  very very open about this. With doctors, family, friends, everyone. I do not care what people think anymore maybe I am too dissociated from myself to feel shameful of the fact that I have sexual dysfunction. But I am open about it and nothing will change if we aren’t  open about it. 

Share this post


Link to post
Share on other sites
composter

Hi @Noloft I'm definitely agreeing with you that we should find a way to bring this conversation into the open. I try to be as open about my struggles as I can, and perhaps it helps that I was put on my AD for something other than depression. But there's still the stigma when it comes to taking an AD in general.  Since my horrific withdrawal episode, I've spoken with as many friends and family members as I feel comfortable with, telling them to stay away from any medication that crosses the blood-brain-barrier. I've also tried to educate a few doctors that I've seen, but the scale by which doctors prescribe ADs and have little to know understanding of withdrawal is absolutely mind-boggling.

 

I believe that the least that the drug companies can do would be to manufacture small doses like 5 mg and 1 mg tablets to make it easier (and more obvious) that people need to taper these things slowly.

 

The sad truth of it is that, at least in the US, so many things are driven by corporate greed and powerful lobbies, that it's truly an enormous task to get anything done on a policy level. Still, there are grassroots things we can each do. These are things like:

  • writing letters to the editor or opinion pieces in major newspapers
  • educating receptive family and friends
  • sharing our withdrawal experience with the FDAs and filing complaints
  • heck, there's plenty of advocacy we can do just via the Internet alone: these days I go through the Reddit forum on antidepressants and leave comments for people who are suffering side effects or going through withdrawal, pointing them to this site and other resources. You can also leave comments on YouTube videos on the topic.

Share this post


Link to post
Share on other sites
1Day
9 hours ago, Noloft said:

1day,

 

i am  very very open about this. With doctors, family, friends, everyone. I do not care what people think anymore maybe I am too dissociated from myself to feel shameful of the fact that I have sexual dysfunction. But I am open about it and nothing will change if we aren’t  open about it.  

Hi Noloft,

 

I admire your courage very much.  If everybody had the same courage as you, then I guess this would be more out in the open.  But even general withdrawal syndrome seems to be not well known about.  But that is what I mean when I say I think things maybe are starting to change.  I think there have been some more things in the media, and maybe some more doctors here and there recognising and even admitting the truth.

 

Personally I very much place a very large chunk of the responsibility on the health/medicine regulatory authorities.  So here in the UK it is the MHRA.  I strongly believe, and think I can say that I know, that they have enough evidence of the dangers of SSRI's and other drugs, but choose to ignore this and not do anything about it.  It is absolutely clear that they are influenced/governed, however you want to word it, by the drug companies.  There are people within the MHRA who in my opinion need to be brought to justice.  I think if they can be exposed for the corrupt organisation that they are, and the evidence that they kept hidden, it could be the beginning of people finally being able to see the real truth.  I guess it is the same in America for whoever your equivalent of the MHRA is.  There are people here in the UK who are highly motivated to expose the MHRA for what they really are.  I am one of them, and together with others, I hope we can achieve this goal.  But it is going to take time unfortunately.  

Share this post


Link to post
Share on other sites
1Day
9 hours ago, Noloft said:

Understood.

 

Have you seen cases of recovery on this site from people who were placed on the medicine during puberty, basically growing up with it in their system?i was placed on Zoloft at the age of 11. Minor sexual problems on, though I didn’t know it because I never had a measuring stick for normalcy. Severe problems after rapid taper. 

Hopefully one of the moderators can answer this for you, as they have seen so many cases on here over the years.

 

It is criminal that people so young are put on these drugs.  But hang in there - you have only been off the drugs for a very short time.  I know it is very hard though. 

Share this post


Link to post
Share on other sites
1Day
23 hours ago, Altostrata said:

That's exactly right, 1Day. But we don't have real statistics, so all we can say is "be patient."

Altostrata, were there any success stories of people recovering from PSSD on the old paxilprogress website that shut down?  I never saw that site. 

Share this post


Link to post
Share on other sites
1Day
10 minutes ago, Altostrata said:

I don't recall exactly, but we have LossLeader's and branyan's success stories on this site, also Djderek's. All had PSSD.

 

Thanks.  I did read a quote on the web that said there were many success stories on the PP site, but not exactly sure if it was referring specifically to PSSD or all withdrawal issues.  Either way, it is a shame if many of the success stories are lost from that site.  But we are very lucky to have this forum.  I dream of the day that I can write my success story. 

Share this post


Link to post
Share on other sites
AbbyElfie

Totally agree with much of what's been said here - while it would be great if people could band together and confront this, but change comes gradually. Especially with something like this. We can certainly plant the seeds, that is our only job - writing letters, having conversations, the things described above. It really does teach you patience! And the funny thing about withdrawal, I think, is at the start you think 'there's no way I can cope with this for years'. Yet, somehow, even if there's not huge improvements, a quiet resilience builds over time. It's hard to explain but I believe it's just beginning for me a year in - I had a horrendous wave recently, almost worse than six months ago. But there's also some kind of acceptance building, and patience. My Buddhist friend said something similar a while ago - fears and anxieties don't really go anywhere, but our resilience to them can strengthen with practice.

Share this post


Link to post
Share on other sites
Noloft

Abby,

 

I found myself in similar situations. Thinking I can’t keep doing this (I don’t acknowledge these thought patterns as my own but as withdrawal brain) yet here I am every day, trying to do stuff with friends and family, going to work part time, working on my thought patterns and practicing CBT, going to yoga classes, working on deep breathing exercises before bed, saying positive affirmations to myself, floating through all this mental torment etc. I guess if there is one thing we can benefit from this is, when we all recover, or partially recover, or become well enough that we can be happy with who we are and where we are in life—although the process was painful, we have become incredibly resilient people and will be able to tolerate other health problems, difficult life situations, etc much more easily. 

There are days when I feel this is gonna be the rest of my life, but on those days I have to remember that on the off chance it is, I will be probably one of the strongest people in the world to have continued throughout all of this physical and mental anguish. The same goes for everyone on this site and is something we should all keep in mind and be proud of. 

Share this post


Link to post
Share on other sites
India
4 hours ago, Noloft said:

, I will be probably one of the strongest people in the world to have continued throughout all of this physical and mental anguish. The same goes for everyone on this site and is something we should all keep in mind and be proud of. 

When I describe my symptoms I met with glazed gazes,  I often think to myself,  if only those unafflicted knew how extreme this is and how brutal it is on the psyche. Would they cope, or survive it?  The invalidation adds the secondary suffering to it all, that isolation is painful . It is amazing how much the idea that ssri's are benign and WD doesn't exist has penetrated many people's belief system leaving sufferers annexed.

Share this post


Link to post
Share on other sites
1Day
On 10/28/2018 at 1:41 AM, Noloft said:

Understood.

 

Have you seen cases of recovery on this site from people who were placed on the medicine during puberty, basically growing up with it in their system?i was placed on Zoloft at the age of 11. Minor sexual problems on, though I didn’t know it because I never had a measuring stick for normalcy. Severe problems after rapid taper. 

 

You asked if there were any recovery stories from people who were on the drugs during puberty; well I have found reference to one from a very young person who was on the drugs for 10 years from the age of 14.  Although at the time of writing I don't think he was fully recovered but you can clearly tell that he is significantly better.  Scroll down to #7 on the list.

 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×

Important Information

By using this site, you agree to our Terms of Use.