Are we REALLY in the minority?

[lotusflower]

Originally Posted by Charlie

I don't believe the frequency is all that low. I believe the percentage of people that go through this and are somehow able to connect the dots and realize what's happening and why is extremely low.

There has been some discussion recently here about how we sufferers of ssri withdrawal are in the minority and I agreed with that until I read the above quote. Suddenly, instead of feeling like someone more sensitive, fragile, neurotic than most others out there, it made me think of it in a different way. I'm thinking in particular of a friend who recently gave birth....she went off prozac during her pregnancy, then after the birth, she went back to the doctor because she was depressed and instead of suggesting that her body may be going through withdrawal, adjusting hormonally etc., he told her that her original symptoms returned. She didn't question that and is back on prozac. I can't talk with her about my withdrawal symptoms any more because she always goes into her lecture about how I need to go back on zoloft. Could it be that most others just don't question the b.s. their doctors are dishing? What is it going to take to wake up the world?
Almost all of my friends are on an ssri drug!!!

I don't know.....I may one day have to eat my words and go back on a higher dose of zoloft but not before the fight of my life to get free.

[babs]

I think you are exactly right.

[caperjackie]

I have wondered this myself and think the true test of 'successfully coming off' is staying off. It seems to me that folk who 'have no problem coming off' and then are back on the drugs a few months later may have suffered some WD without realizing it. This would have to skew the statistics. My own opinion is that the minority are those of us who are truly successful at living life SSRI free. Yay us!!!!

[julieannboo]

no i dont we we are in the minority.

i think that people who taper too quickly are in withdrawal then go back to the docs and they are told the depression is returning then they go back on these horrible drugs.

rubbish.

[Jonno]

Just to echo the other commenters - I suspect we are not in the minority. As with many of us I was misdiagnosed with depression when I was experiencing withdrawal, after I was originally prescribed meds for post viral syndrome.
The UK National Health Service now confirms the existence of withdrawal as a side effect, and ranks it as a very common side effect ( greater than 1 in 10 incident rate ) of SSRI's - so hopefully more doctors and people will realize what is going on.

Here is the link to the NHS web site:

http://www.nhs.uk/Conditions/SSRIs-(...e-effects.aspx

[aberdeen]

I've wondered the same thing. I recently talked to a friend who had been on ssri's for a awhile. I thought she had said she (and her hubby) were now off. I emailed her to ask her how coming off was for them, and she said they are both back on. She didn't say why her husband was, but told me that she had to go back on because she's a teacher and every September her "head starts to spin" with all the stress. I don't even get that! I wonder how long she was off, it was probably withdrawal as she mentioned she quit cold turkey. I told her about this site....and haven't heard back,lol.

[mustangwoman]

I think this is exactly right. It took two different times of going back on the ssri about 6 months after withdrawal, when a lot of people experience worse depression and anxiety then they ever thought was possible, along with suicidal thoughts, which most had never had before, and then I found this site and a few others and the light bulb went on. I've wondered many times how life would be different if I knew then what I know now.

[PaxilDream]

I for sure don't think we are in the minority. I believe we are the few true people fighting the fight that it takes to get completly unslaved to an SSRI. If we weren't givin an SSRI to begin with we would not be in this mental mess now for not getting "treated". I believe most get off and are easily convinced to return to using an AD since there original symptoms have returned. The fact that not many are here I believe is because they are just switching from one drug to another to keep out of withdrawal. They very well may not even know how deep they are in there addiction at the moment. I clearly remember missing a few days and thinking coming off paxil would be hard. Then I went to weeks off and that was plain hell. I knew I had a problem but even then didn't know how deep I was in trouble. It wasn't until 40 days of pretty much cold turkey and then the following 3 months of weaning and not at 5 months 11 days off that I can clearly look back and see how far I have come and how far I still have left to go to realize that there just isn't that many people that will EVER get off the drugs. Some may very well dodge be bullet by getting off early enough but my opinion is that it will eventually turn on every one.

I think we all never would have imagine that "we" were the ones that would be in withdrawal for as long as the horror storries we read about.

[aberdeen]

Originally Posted by PaxilDream

I think we all never would have imagine that "we" were the ones that would be in withdrawal for as long as the horror storries we read about.

I agree!

However, I DO have some friends who have switched or quit cold turkey and made it! So who really knows....and the others as i said have gone back on, but some haven't. And she didn't suffer...?

[miriza]

I totally agree that we are not in the minority...after my horrible adverse reaction to psych drugs all of a sudden it was like I had entered this parallel universe where I had this secret knowledge about these drugs...and then I had this realization about this co-worker who had been missing work, was always shaking like he had Parkinsons, was always nervous or lethargic, walking slow, etc. I knew right there that he was being poisoned by psych meds...and I asked another co-worker who is close to him, if by any chance he was taking psych drugs...and yes, Prozac! And the correlation of when he had started the Prozac and when his mental decline started was absolutely perfect...Poor guy!

Someone I love dearly a long time ago became a little aggressive and angry and I could not figure out how this amazing human being would all of a sudden become that way...so I inquired about drugs and she confessed that at that moment she was on Prozac too.

Another family member is suffering from mood swings, panic attacks, out of love from her husband, etc. She's on an SSRI as well. From what I understand she was just initially dealing with anxiety.

Another family member who I always considered a saint was all of a sudden diagnosed as bipolar due to anger issues. I then found out he had been given SSRIs prior to the bipolar diagnosis.

Another friend is on 3-4 meds because she became suicidal on an SSRI and the other meds were given to counteract the suicidal thoughts.

A friend's friend gets violent every time she stops her meds....everybody thinks is because she needs to be ON meds; I know better.

So, that's just 6 people close to me that I've found out about while going through this mess myself...I can't imagine how many others are going through the same and don't realize it.

One thing is for sure, I can now spot people on meds from a mile away. There is something in their eyes that is telling....It's like their eyes lack life, like they lack a soul (sadly, my eyes look like that too ).

[Brassmonkey]

My eyes are one way I know if it is just feeling neurtal or feeling nothing. When I feel nothing there is a deadness looking back at me from the mirror, but when I just feel neutral thereis a spark behind the eyes.

[aberdeen]

I see the look now too in peoples eyes. It could be other meds too, perhaps pain meds or whatever...but there's a look. I'm sure I have it big time right now.

[Lovesthebeach]

I agree, we are not the minority; I ran into a friend of my mom's at the grocery store yesterday that I had not seen in a long time. She commented on my weight loss and how great I look (I gained 75 lbs on Paxil and have lost about 30 lbs since I quit taking it) and asked how I did it. I fessed up that I had gained a lot of weight when I was taking Paxil and since I stopped, the weight has been coming off and then I was telling her about the problems I had been having getting off of them. Then she told me that she had been taking an SSRI for over 10 years and recently she was trying to quit because she didn't feel like she needed to take them anymore but she was thinking that she needed to go back up again in dose because she was having problems with not feeling right. So I was telling her about SSRI WD and she might be having WD problems. She confessed that she was not working with her Dr with getting off it, so I gave her the 10% rule (not that most of them know much about or even acknowledge WD) and filled her in on all the info on this website. So here she is another example of how people have issues with getting off SSRI and don't even know that there can be issues with it. The conversation was also interesting because she said that about 80% of her friends are on some kind of AD. It is insane really the amount of people that are on AD medications.

[medsrnot4me]

I have thought about this a lot and also agree we are not in the minority at all. I have read so many stories here about people having withdrawal symptoms only to be told by their providers that their original symptoms had come back and they needed to get back on their SSRI. I myself was told by a doctor that my withdrawal symptoms were my depression problems not being treated by a high enough dose of Zoloft. Even though I tried to explain that never in my life had I ever experienced anxiety like I was experiencing at that time. She just did not want to listen. Nor did she think I needed to taper slowly- she said she thought it was ridiculous and she never had had a patient have so much trouble getting off of an AD. Needless to say, I am not seeing her anymore.

[Lovesthebeach]

Originally Posted by medsrnot4me

I have thought about this a lot and also agree we are not in the minority at all. I have read so many stories here about people having withdrawal symptoms only to be told by their providers that their original symptoms had come back and they needed to get back on their SSRI. I myself was told by a doctor that my withdrawal symptoms were my depression problems not being treated by a high enough dose of Zoloft. Even though I tried to explain that never in my life had I ever experienced anxiety like I was experiencing at that time. She just did not want to listen. Nor did she think I needed to taper slowly- she said she thought it was ridiculous and she never had had a patient have so much trouble getting off of an AD. Needless to say, I am not seeing her anymore.

Medsrnot4me-I know how you feel-I was told by this one Dr that no one has problems getting off these medications and if there were problems it was me and that I needed to stay on Paxil. I no longer see that Dr either.

[medsrnot4me]

Originally Posted by Lovesthebeach

Medsrnot4me-I know how you feel-I was told by this one Dr that no one has problems getting off these medications and if there were problems it was me and that I needed to stay on Paxil. I no longer see that Dr either.

That is terrible! It is good to know I am not alone but so sad we have had these kinds of encounters with Drs. At least my current Dr. recognizes that these meds. are difficult to get off of and is supportive of my verrrrrrrry slow taper, encouraging me to take as much time as I need. So I guess the good news is that there are some good Drs. out there - they just are too rare when it comes to this stuff, unfortunately. I hope you've found a more supportive provider!

[aberdeen]

I have a supportive family Dr but the original prescribing psychiatrist told me that my insane anxiety while I crashed and burned from effexor was actually stress over my husbands new business.

[scotty]

I think we're in the minority of those who recognize that "your drug may be your problem".

[vestabula]

Most people go back on them the minute they experience a brain zap or some other nightmarish symptom. Most doctors will suggest reinstating or upping the dosage when this happens....mine did. These people are not included in the w/d statistics as they never get off of them. I went to my pharmacist when I first started to wean and asked what I could take for the brain zaps. She pulled me inside her cubicle, whispering. She said 'I have tried to get off Lexapro three times and can't stand the zaps and nausea...I'll lose my job if I don't stay on it." There are countless millions of others who are forced back on the drug.

I'm two and a half years Lexapro free but now going through benzo w/d which for me is MUCH worse, which I thought could never be possible. Lesson learned!

[julieannboo]

Originally Posted by scotty

I think we're in the minority of those who recognize that "your drug may be your problem".

i think that you are right.

i hope that one day people start to realise that these drugs are bad news.

[aberdeen]

This is all true, but we can't ignore the reality that, at least in my life, I know people who have come off and stayed off and really had no issues doing so! A friend of mine CT'd 5mg of Cipralex (Lexapro for some of you) after years, she had mild depression and PMS for a couple months and has been fine since, she's been off for 2 years now. It was a low dose though. Another friend of mine comes off Prozac whenever she feels like it and will stay off for years, then use it again if she feels she needs to. My other friends have had success doing straight switches when they reach poop out, with a week of discomfort before finding 10 more years of smooth sailing on the next med. I would love to get a true idea of how many people this happens to, Dr's think it happens to no one, yet we live the reality everyday with who knows how many others.

[PaxilDream]

Originally Posted by aberdeen

This is all true, but we can't ignore the reality that, at least in my life, I know people who have come off and stayed off and really had no issues doing so! A friend of mine CT'd 5mg of Cipralex (Lexapro for some of you) after years, she had mild depression and PMS for a couple months and has been fine since, she's been off for 2 years now. It was a low dose though. Another friend of mine comes off Prozac whenever she feels like it and will stay off for years, then use it again if she feels she needs to. My other friends have had success doing straight switches when they reach poop out, with a week of discomfort before finding 10 more years of smooth sailing on the next med. I would love to get a true idea of how many people this happens to, Dr's think it happens to no one, yet we live the reality everyday with who knows how many others.

I do believe there are many that can switch medicine over and over and make it but I strongly feel those same people just have no idea how hard it would be if they wanted completley off. The only true test to see how withdrawal will effect the masses (and the people who say they don't have a problem) would be to have long term users come off for a trial. But we know that just can't happen because people have jobs, people think they aren't a slave, are happy taking them, and so on.

[Backtopaxil]

Thank Al Gore for the internet.

I cannot imagine this happening in any other time. some of us knew something did not add up. But now we can research, see other people's reactions and then put 2 and 2 together.

We are not blind anymore.

[jheaney1]

I read several studies and white papers posted on glaxo's website. Most of it was difficult to understand, I only have a limited understanding of clinical procedures. Their literature states that 2% of users have "mild symptoms that last only 1 to 3 weeks after discontinuation." I read other meta studies that combined several studies from different companies (studying SSRI as a group of drugs) Their results were that 40 to 60% of users experienced withdrawal symptoms. Even if we discount both numbers as biased, and skew the percentage in favor of the drug companies, 10 to 15% of users experience withdrawal symptoms severe enough to report. That would translate into almost a million users with severe withdrawal symptoms.

Anecdotally, I've never seen this site have fewer than 50 to 60 people browsing the forums. That concurrent population represents many more people who visit regularly. that number alone is enough to convince me that withdrawal is much more pervasive than the companies, doctors, et al admit.