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csm2014

The emotional aspect of using psych med forums

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csm2014

I personally have found this forum and one other to be an invaluable wealth of knowledge and educational data with nothing but supportive folks who have already "been there/done that", volunteering their time and effort. Thus, out of respect to them, I will always try and keep a more rational, proactive, and scientific approach rather than a reactive and emotional one which serves no purpose but to add unwanted burden with which we each already have enough of. No where else could this information be culled and absorbed, especially in terms of correct tapering, certainly not via 99% of mainstream docs out there that produce more "permanent patient" victims from ignorant tapering protocols than successes that are able to move on with their lives and put this behind them.

Nonetheless, I’ve observed a few former members who post briefly and then suddenly disappear. The reason (as one put it): “Too many horror stories to read, sets me back.”  

 

Of course that statement came from someone who had experienced a rapid taper and had a history of GAD/PTSD. Granted, it is not uncommon for anxiety and depressive ruminations to ramp up (especially during a taper) from reading about others’ suffering, but isn't that to be expected as part of the process of due diligence when confronted with the formidable task of tapering off very powerful psych meds? Reading "downer" posts is unavoidable as part of the research process and I think a small price to pay in terms of bashing one's morale for a day or two as long as you get the right taper plan down, because at the end of the day, that’s all that matters. Based on my observations, 99% of those that suffer peri or post taper are typically the ones who either C/T’d or rapid-tapered, of which I see little difference.

I think the thing we all have to keep in mind is to not let others' issues affect our own (easier said than done) and realize that everyone’s histories, issues, tapers, whatever, are entirely unique unto themselves and cannot be held as a one-size-fits-all sentence for our own tapers and their respective outcomes.  Nonetheless, it can still be a double-edged sword. It takes that mental fortitude to separate it all out and just do what we have to do, get the data we need and go on about a taper that produces the least amount of withdrawal so we can move back on to the business of living our lives.

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Marta

It's not easy at all of course.......also search on google bad stories like " bla bla forever, chronic and so on", worst thing to do.

 

It's true that one-size-fits-all it's not the best but at least is something.

I, personally, have a strict scientific formation and I try to be always rational and realistc BUT in this period (hopefully a period) it's very very hard and the "supportive" approach is much better.

Sorry if my answer adds nothing to what you said!

Cheers!

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Marta

Ps. Btw I still have a little faith on the "correct" medical research

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ikam

I personally lost my hope when it comes to the research, but believe that healing is possible :)

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manymoretodays

yes, there can and is a highly emotional aspect to using psych med withdrawal forums.

 

no two stories are alike and if some of the CT aspects came about from withdrawal issues to begin with I will not beat myself up for stupidity when that stupidity was actually part of my withdrawal process.

 

nope.....can't go back and do it differently.

 

i don't know.......we are the research......i mean is there anyone so organized here that wants to have us do questionnaires and then run them through some kind of clinical research procedure........i mean p values and all that........will that yield any truth for further sufferers on the quest?  It might.  I'm game.  I could brainstorm anyway.

 

gotta believe in healing even when what exactly that is .......remains unknown.......i am certain i will know it when it hits and already have experienced a bit, a taste, enough to keep going.

 

but yeah......I acknowledge an emotional aspect to using the forum.  this is really the only one i use as far as withdrawal goes.  i did look at one on Lexapro and it was comforting to hear someone acknowledge the illusions/delusions shortly after being off of one evil drug for me..........and it takes awhile to rationally get over such an experience when you/I are past it.........i mean mine wasn't so bad and there are still remnants hanging around in my psych.  I mean it was the total white light, which in reality, it is never going to be again..........but to remember it fondly helps.

 

today I am just going to go with.......weird IS the new normal..........just wish I could present it better and not feel so damn alone with it.

 

Thank you everybody here with all my respect and kind contact.......sheesh.......the tears again.......sunglasses are a great and wise invention.

 

my avatar is going to be a sundog.......I saw one and captured it pretty well with my samsung..........i have no idea how to find wherever I have it stored and check it's size and use it.........somewhere on a cloud........maybe still on my phone...........rambling in light of the sheer unfamiliarity of any other activity.........but I will try.........try, try, try.......try while afraid.

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Altostrata

This is an excellent topic, thank you, csm.

 

Unfortunately, we are caught in a corner of medical error. This can be very frightening to some people.

 

But it is the truth, and trying to cover it up (as was done at paxilprogress) may be reassuring to some who don't want to deal with the greater issues but does not do anything to help those who are suffering the most, or to educate medicine about the problem.

 

From what I've seen, the most unpleasant realizations are 1) you cannot trust doctors to know everything, there are holes in the safety net of medicine through which you might fall; and 2) quite frequently, the drugs cause emotional anesthesia that can continue for a long time after stopping.

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csm2014

It pains me to think some cannot handle the emotional pain from reading others' posts where they're still suffering post-withdrawal. There is a fine line between culling all that anecdotal data in the hopes of being proactive, NOT reactive. You read the horror stories and can't help but freak out at first, but the bottom line is that this board is here to be used PROACTIVELY, to learn the tools to climb out safely from our rabbit holes. Why run from that?

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manymoretodays

That was very well said.  Proactive not reactive.  Gotta be that way about all of life really.   I like the rabbit hole analogy too.  Keep posting.

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peggy

speaking for myself, reading about other peoples horrors whilst in the MIDDLE of withdrawal provides a handle for my anxiety to latch onto - 'what if that happens to me'?  

 

when NOT in withdrawal i can read horror stories and KNOW that they are someone's individual experience and won't necessarily happen to me.  

 

But it is dialogue that is necessary for all of us to grow, despite how painful it may be.

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indigo

Reading about other peoples struggles helps me feel less isolated. I don't actually know anyone

in my "real" life that is withdrawing from anti-depressants.  There does still seem to be a stigma

in resorting to taking meds for depression, so I told no one. Thus when I began to withdraw from

Prozac and was having anxiety, insomnia, obsessive ruminating etc, I had to hide that too.

After a year of tapering, I made a concious decision to make myself tell one or two close friends.

It was hard for me. They listened but they didn't really understand how even minute drops in dose

could cause such distress. 

It is only on this forum that I can read other peoples struggle and anguish and know that I'm not

a freak, . . . or worse. . that I'm imagining it's worse than it really is. So thanks folks for sharing

the depths of yourdistress. Helps me feel less alone.

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csm2014

Reading about other peoples struggles helps me feel less isolated. I don't actually know anyone

in my "real" life that is withdrawing from anti-depressants.  There does still seem to be a stigma

in resorting to taking meds for depression, so I told no one. Thus when I began to withdraw from

Prozac and was having anxiety, insomnia, obsessive ruminating etc, I had to hide that too.

After a year of tapering, I made a concious decision to make myself tell one or two close friends.

It was hard for me. They listened but they didn't really understand how even minute drops in dose

could cause such distress. 

It is only on this forum that I can read other peoples struggle and anguish and know that I'm not

a freak, . . . or worse. . that I'm imagining it's worse than it really is. So thanks folks for sharing

the depths of yourdistress. Helps me feel less alone.

 

speaking for myself, reading about other peoples horrors whilst in the MIDDLE of withdrawal provides a handle for my anxiety to latch onto - 'what if that happens to me'?  

 

when NOT in withdrawal i can read horror stories and KNOW that they are someone's individual experience and won't necessarily happen to me.  

 

But it is dialogue that is necessary for all of us to grow, despite how painful it may be.

I think this gives everyone the true lowdown when on either side of the fence. Thanks for the input and thanks for confirming that knowledge is power. This is all about perspective, as we are NOT our w/d symptoms.

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csm2014

Reading about other peoples struggles helps me feel less isolated. I don't actually know anyone

in my "real" life that is withdrawing from anti-depressants.  There does still seem to be a stigma

in resorting to taking meds for depression, so I told no one. Thus when I began to withdraw from

Prozac and was having anxiety, insomnia, obsessive ruminating etc, I had to hide that too.

After a year of tapering, I made a concious decision to make myself tell one or two close friends.

It was hard for me. They listened but they didn't really understand how even minute drops in dose

could cause such distress. 

It is only on this forum that I can read other peoples struggle and anguish and know that I'm not

a freak, . . . or worse. . that I'm imagining it's worse than it really is. So thanks folks for sharing

the depths of yourdistress. Helps me feel less alone.

So true. Few physicians even know or understand the suffering that their patients go through, let alone lay people.

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nancy2

Thanks for this thread. For me, it's good to talk about stuff like this, the bigger picture.

 

My isolation comes from knowing a lot of people who still believe docs know best, and they seem to cling to that no matter what. They take psych meds for decades, and seem completely happy taking them for the rest of their life. One woman I know got that tremor thing from Paxil and seemed perfectly happy to just switch meds! They also take antibiotics for viruses and just about anything else, and now steroids/Cortisone is the new 'antibiotic'! Being given for many, many things. Really gives me the creeps.

 

I try to speak up a bit in a way that can be heard, not ranting, but so far not much success in anyone visibly hearing me. I do have to keep speaking up with my own reality for my own sanity. Maybe people hear more than I think.

 

Have tried to meet new people more like-minded to me... So far have done so only over the phone from long distance, meeting others in online and phone venues and then continuing the relationship. GLAD TO HAVE ANY SUPPORT!!!! At this point, my support online and on the phone is GREAT and I appreciate that.

 

Others thoughts on this welcomed.

 

Nancy

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adrien

It's too early to know because i've only been going to this forum about a day. But i feel kind of ignored because one of my topics has 40 views but only one person replied. This is probably just me thinking the worst. I tend to see negative in everything. I wish i knew exacly what my problems are and how to articulate them but it's hard.

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Wildflower0214

For many reasons this forum has been a lifeline to me. The information has literally saved my life, and I'm not exaggerating. If I had not known what I learned here, I would have never been given the validation I needed to tell the doctor NO...no more drugs.

 

I have met so many people here that have helped me so much. I am eternally grateful to everyone, including the mods.

 

With that said, there are those of us that go through a stage of dread/terror/confusion that make being here more painful than helpful for periods of time. I have had to take breaks. Sometimes for a few months at a time, because I simply could not be here. It is hard to be objective during the severe parts of withdrawal.

 

I have learned that this is ok. If I can be here and it's beneficial, great. If it stops being helpful, time for a break.

 

All in all, I thank God for this forum, it has kept me from having to be alone. I cannot express my gratitude enough. Like I said, the connection to others struggling with this and the information saved my life. And, I suspect I am not the only one it has saved.

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Wildflower0214

It's too early to know because i've only been going to this forum about a day. But i feel kind of ignored because one of my topics has 40 views but only one person replied. This is probably just me thinking the worst. I tend to see negative in everything. I wish i knew exacly what my problems are and how to articulate them but it's hard.

It takes a while. When I first arrived it was a month or so, maybe more. The mods responded to me quickly, but it was a while before anyone else did, if I remember correctly. A good way to get people to know you is to visit their threads and offer support. And, they will then visit yours in return. :)

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pug

For many reasons this forum has been a lifeline to me. The information has literally saved my life, and I'm not exaggerating. If I had not known what I learned here, I would have never been given the validation I needed to tell the doctor NO...no more drugs.

I have met so many people here that have helped me so much. I am eternally grateful to everyone, including the mods.

With that said, there are those of us that go through a stage of dread/terror/confusion that make being here more painful than helpful for periods of time. I have had to take breaks. Sometimes for a few months at a time, because I simply could not be here. It is hard to be objective during the severe parts of withdrawal.

I have learned that this is ok. If I can be here and it's beneficial, great. If it stops being helpful, time for a break.

All in all, I thank God for this forum, it has kept me from having to be alone. I cannot express my gratitude enough. Like I said, the connection to others struggling with this and the information saved my life. And, I suspect I am not the only one it has saved.

You have stated this beautifully, thank you.

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Wildflower0214

 

For many reasons this forum has been a lifeline to me. The information has literally saved my life, and I'm not exaggerating. If I had not known what I learned here, I would have never been given the validation I needed to tell the doctor NO...no more drugs.

I have met so many people here that have helped me so much. I am eternally grateful to everyone, including the mods.

With that said, there are those of us that go through a stage of dread/terror/confusion that make being here more painful than helpful for periods of time. I have had to take breaks. Sometimes for a few months at a time, because I simply could not be here. It is hard to be objective during the severe parts of withdrawal.

I have learned that this is ok. If I can be here and it's beneficial, great. If it stops being helpful, time for a break.

All in all, I thank God for this forum, it has kept me from having to be alone. I cannot express my gratitude enough. Like I said, the connection to others struggling with this and the information saved my life. And, I suspect I am not the only one it has saved.

You have stated this beautifully, thank you.

That's very nice of you to say. Thank you.

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MissSerene

I'm also very grateful for this forum. It gives me knowledge/tools AND a safe place to share when I'm in a down mood about being in this ordeal.

 

Reading others' stories and reflecting on my own experience, it's hard not to feel sad and angry about, as Altostrata put it, being "in a corner of medical error." In an era of such rapid technological advance and seeming sophistication, how could this have happened? Then I remember that trained professionals once believed the sun revolved around the earth. Untold numbers of people were subjected to blood-letting and other misguided practices. Re: big pharma, doctors, etc., while personal or commercial gain accruing from partial knowledge -- or from obfuscation and deception -- is not surprising, it remains shocking.

 

For me, reading on this forum also brings painful realizations about my traumatic childhood, ill and struggling family members and longstanding self-defeating behaviors. The good news is that, finally, I'm starting to learn about emotional, physical, and spiritual self care.

 

Thanks to all for such helpful information and caring support. This forum gives a whole new meaning to, "It takes a village."

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csm2014

That was very well said.  Proactive not reactive.  Gotta be that way about all of life really.   I like the rabbit hole analogy too.  Keep posting.

Don't know if you noticed, but my avatar is one in which I am standing at the edge of that veritable rabbit hole :)

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MissSerene

Forgot to say that I also often take breaks from the forum. At times, being here gives me a sense of belonging and support, and other times, I feel weighed down by negative feelings about what's happening to others. It's easy to start seeing myself as defined primarily by my struggle with withdrawal, and feeling ill or vulnerable or afraid.

 

I often don't respond to others because I don't have anything very informative to add or suggest, and/or because the particulars of others' experience sound very different from mine. But no matter what, I want others here to know they are heard and cared about. For me, this emotional aspect is really important.

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csm2014

When you're starting the daunting task of tapering, it's tough to switch off emotionally lability not to just the seemingly endless suffering we read on these forums, but to what we hear in our lives. For example, it didn't help the other day when a friend of mine (who knows I've just started tapering Klonopin) tells me that his friend was unsuccessful in his attempt to taper the drug after being on it for only 9 mos. (about the same time as me) and had to reinstate. My logical mind processes that info as just a statement made out of context, as I will never know all the details, the dose, this person's history, if such a person is on other meds, has mental health issues, and mostly, what his definition of a taper is.  My emotional mind starts in with, "could he be one of the minority whose brain was altered to the point of no return, and could I possibly fall into that tank?"  

 

Then I listen to my friend today, someone who has had a long history of multiple substance abuse, including psych meds, after having just gone through a heart transplant (his heart condition caused by such abuse), in recovery, and doing fine now. We're talking about someone who had abused opiates, benzos, and a host of illicit drugs to boot for a period of nearly a decade. But, in this extreme example of nearly losing his life, he made it.  

 

I have been through many hardships in which I was unable to see the forest through the trees from where I stood. To live in mystery is misery, and that misery is sometime worse than the actual mental or physical pain itself. But in nearly all cases, I came out just fine when it was all said and done. And in this taper, here I am, facing yet another unknown. We have to believe we can make it to the other side as my friend has, and process the negative comments as being anomalies, out of context, and not give up and succumb to fear. All easier said than done.

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