Newbies not understanding suffering (formerly CT or Rapid Taper Discussion)

[Altostrata]

bells, I'll respond to a few points you made in your long post above.

 

It's not only newbies or the unsympathetic who write me when someone is being unrelentingly negative. I cannot control who writes me about what. They write me about something they think management should take care of (and a ton of other stuff, too).

 

People have different ways of reacting to the suffering of others. Each of us has at some time seemed unfeeling or harsh. Many types of reaction are authentic. People have different world views about how to cope. There is no one right way to support anyone.

 

This is an Internet forum. I wish it could replace all the love and comfort people are missing in their lives, but it cannot. While it seems like a real place, it's just an Internet forum.

 

Like every community, individuals have a lot of different needs and interests. New people are always arriving. It's impossible for me to control their behavior, nor would I want to. On very rare occasions, I reluctantly restrict people to their topics, and even rarer, ban them from the site, for the good of the community. You need to trust the perspective of the administrators and moderators on this.

 

I do not want to sequester long-term sufferers in a separate forum for many, many reasons. Sometimes people who are dwelling on their suffering are hurting themselves and this influence can hurt others.

 

The people who are having an easier time learn from those who are having a worse time, and vice versa. People who are naive learn that others have experiences and feelings that are different. People who are scared learn the truth that we are in a dangerous reality (or simply go away). Newbies become core community members. Everyone benefits from the energy of the commons.

 

Unfortunately, while we can always discuss tapering techniques with those who are in the midst of tapering, we can't do much for those who are suffering long-term post-discontinuation syndrome other than offer community and emotional support (subject to the limitations of an Internet forum). I encourage long-term sufferers to open topics in Symptoms for discussion of their special issues. This will help everyone.

 

There may be people here who find everything we can do to be unsatisfactory. I'm sorry, we do our best. You must keep in mind the limitations of the medium, the limitations of humans to understand each other, and the limitations of what can be done for suffering.

 

If you wish to communicate in a more sheltered environment, there is the personal messaging space, where you can correspond with selected friends. You can always block people that upset you with the Ignore function. And, ultimately, if participating here gives you nothing but grief, you can stop visiting.

 

I know you're unhappy here, bells, and I'm not sure I can do anything to change that. We all need to allow differences in temperament, reactions, and understanding.

[Petunia]

I think it would help those of us paddling the row boat to have each other along the way.

 

I'm definitely in a row boat, so far from land I often wonder if it still even exists, thankfully, for me, the seas have calmed a little over the past couple of days.  But I lost an oar and keep forgetting to alternate sides with the remaining one while paddling, so I'm going around in circles.  Its hard to develop new habits with cognitive issues causing problems.

 

How is everyone else doing today?

[Frustrated]

well I certainly understand the boat analogy.  Especially the going in circles part.  Luv2knit, JDM  haven't heard much from you two in the last day or two.  I sure hope you are doing alright.  I managed to get to the grocery store and back today which is good, but these intrusive negative thoughts have to go.  I think I am actually afraid of myself.  I feel like I don't even have control of my own brain.  Has anyone ever snapped completely or does this eventually taper and go away?  Sheesh, I have kids to raise and it is getting hard these days, especially with my son having his own issues with Seroquel.

[LoveandLight]

Urgh the intrusive thoughts..I've had this for so long intermittently that I came to believe that it was just my personality. I think knowing that they are just thoughts are half the battle and trying to observe them but I know this can be almost impossible at times.

[luv2knit]

I'm here, Frustrated. Thanks for asking. I'm hanging in there. Not much sleep last night, but a little more night before. Still having the nausea and vertigo that I haven't had in a while, and as always, the akathisia is there in varying degrees. I haven't been able to drive, but have been pretty busy today riding around with the family running errands.

[Patoski]

Hi I've just turned 73 a few days ago I've been fighting this disease for the last 40 years I mean the addiction to legal drugs and alcohol I have not had a drink for 39 years and I came of bensos 28 years ago it was a4 year nightmare for me but all those symptoms adventually passed but I remained on antidepressant.s but I have now been drug free for 6 months and if I die tomorrow I can consider my self a success yes i am in protracted withdrawel and it is far from good but it is the hand I've been dealt and I have to play it of course we all get negative but thank God we don't all get negative on the same day

.so we can encourage one and other forward I believe if I had the luxury of this wonderful site all those years ago I would have saved myself 30 years of pain I also believe that one day I will be well my first withdrawel supports the belief I've also learned quite a bit through the years I learned not to give up 5 minutes befolre the miracle happens and to keep my life in today and that the pain of this world will no way compare with the glory of the next world so with your help I will soldier on God bless all of us.

[Wildflower0214]

Well

 

I have been thinking. I believe I have to weigh cost and benefit here. This forum has convinced me that I am not crazy. And I have needed the info. But, I have also had the living sh*t scared out of me because of some of the info.

 

I often wish each of us had someone who was very experinced in this who we could go to and ask "is this normal? Will it pass?" And they could say yes without giving us any unneeded info or possible disasteous scenarios. They would keep everything on a need to know basis. But, that is not the case so we end up sifting through horror stories for answers. These things haunt me. And they get stuck in my head. What if.....? It's endless.

 

I still need the Benzo section, and will continue to go there for guidence.

 

I have really nowhere else to go besides here. But I believe the cost to me is outweighing the benefit. So, Im gonna discipline myself and stick to the benzo section when needed.

 

Everytime i spend time in here, I leave fearful. It's just where I am in WD and is no reflection on the valudity and usefulness of the forum.

 

I have to say I resent the living hell out of people dropping by threads to infuse more fear and "what if" scenarios. If the fear isn't there, even if it may be something to legitimately be concerned over, DONT INTRODUCE IT! It is damaging and it hurts people. It has hurt me. I do not need to know all the possible disasteous outcomes. You don't tell someone with cancer "there is a 25% chance you won't live, you tell them there is a 75% chance you will survive." Introducing fear is speaking death into a situation. That is not a kind thing to do to people in our position, but I doubt anyone actually took the time to consider our position, but jumped at the opportunity to do whatever they felt they needed to do without considering the possible consequence to others. I've had enough.

 

ive said this before but never stuck to it. But I have to. Being here is making me more sick.

 

Please, let us be more mindful of our words. They have power. Especially, now in this situation.

The only way I can keep people from speaking these things to me, is to remove myself. I can't control others.

 

I am going to get better, and I'll not allow others to stop that.

 

So, for now, while I'm in this place mentally. I'm taking a break.

[Frustrated]

Sorry to hear that JDM but I totally understand your point and respect that decision.  You have to do what is best for your healing process.  I wish you well and hope you have a speedy recovery.

[luv2knit]

I agree as well. I keep wanting to check on the ones I have been communicating with the most and see how they are doing, but I am in a very fragile place right now... Can't handle some of what's going on.

[compsports]

As one of those experienced veterans who has been contacted by several newbies for encouragement, I feel like I am in a dammed if you do and dammed if you don't position.    For those of you now familiar with my story, a year after getting off of all psych meds, I was diagnosed with sleep apnea.  In a nutshell, I have been unable to stay asleep on the machine and have suffered greatly from sleep deprivation and quality sleep.   To be honest, my life has been hell.

 

So I explain that while I am not doing well because of my situation, that they can't go by my experience because it is highly unusual and that there are many success stories to look up.   But that answer seems to fall short since I am not giving a glowing report of my own situation.

 

To be honest, I have thought of simply ignoring the messages but at the same time, I know how I feel when people don't respond to my posts so I don't want to do the same thing to other people.   But at the same time, if my response is not what people find helpful and to be honest, I am not going to say I am doing fine when I am not, then I may not have any choice.

 

CS

[luv2knit]

CS, I don't think anyone can fault you for being honest when asked about your situation. I think the issue we have here is with someone who randomly comes on a thread where relatively "new" people are clearly barely hanging on and volunteering every dark, gloomy thing you possibly can. This was the case with an earlier post on this thread, and it was pretty upsetting. It sounds to me like you have tried to be compassionate with your responses to direct questions while at the same being honest about your situation. Best wishes!!

[compsports]

CS, I don't think anyone can fault you for being honest when asked about your situation. I think the issue we have here is with someone who randomly comes on a thread where relatively "new" people are clearly barely hanging on and volunteering every dark, gloomy thing you possibly can. This was the case with an earlier post on this thread, and it was pretty upsetting. It sounds to me like you have tried to be compassionate with your responses to direct questions while at the same being honest about your situation. Best wishes!!

Thanks luv2knit, that makes me feel better.

 

Yeah, I don't blame you at all for being upset with people volunteering every dark gloomy detail possible.    That is so mean and cruel and I don't understand why someone would do that.

[luv2knit]

Exactly, CS!!

[Altostrata]

JDM, by all means, take a break if you need it.

 

I think a lot of us find the realization that medicine is not the safety net we thought it was to be very distressing. As for the problems with withdrawal, I wish they were different, but they are what they are.

 

I and the mods get messages all the time asking us "Is this normal?" Under the negative influences of the drugs, we all wrestle with thoughts and sensations we never imagined. I truly appreciate old timers helping newbies with that question.

[WiggleIt]

I just feel the need to list my symptoms so I can look at them and remember what I have survived:

 

Food intolerances causing mood problems, heavy limbs, paranoia, sleep disturbance, sensations, feeling of head numbing....etc.

 

Paranoia

Intrusive thoughts

Obsessive ruminating

Reactions to over the counter medications

Burning sensations

Electrical sensations

Crawly sensations

Restlessness

Feeling drunk

Cog Fog to the point I barely knew where I was

Inability to cry

Panic

Fear

Seeing "things" eyes playing tricks on me

Some level of psychosis

Parkinson's like tremors

Urinary retention

Cavities due to poor hygiene during a couple months when I was too sick to bathe for days

Memories of traumatic past

Rage

Jolting when trying to sleep

Twitches

Nightmares

Hot/cold sweats

Derealization

Feeling like on illegal stimulant drug

PGAD

Feeling like upper and downer at the same time

Suicidal ideation

Skin rashes, reactions to lotion, deodarant, soap, shampoo.

Complete Insomnia

Waking many times during the night

Noise sensitivity

Light sensitivity

Sound sensitivity

Nausea

Loss of appetite

Inability to regulate body temp, freezing all the time

Feeling like head is numb and dead in areas

Inability to take pleasure in anything

 

 

That's all I can think of, but I think there is more..

 

Makes bootcamp in the Marines look like a birthday party.

JDM 1984 and luv2knit:

 

Wow, I have ALL of these.  Coming off a tricyclic and a benzo.  You can see all my symptoms in my signature below.  I just want to know that it will get better.  I am so sad that I let the doctors put me on these meds for a medical problem that now seems to be responding well to physical therapy.  

 

I know that most people here were put on meds for mental health reasons, so I'm not sure if you are aware that tricyclic antidepressants are now being handed out like candy for things like IBS, fibro, and pelvic pain.  

 

I don't know if all my Parkinsonism and jerks and twitches and restlessness come from the benzos or the TCAs, or both.  I just want to know that it DOES abate.  I SUPER rapid tapered everything because I was told it was okay to do so.  

 

Can you please tell me it gets better?      

[luv2knit]

WiggleIt--I was put on Zoloft (SSRI) 20 years ago for Chronic Fatigue Syndrome. I did not have anxiety or depression. I unknowingly did a much too rapid taper (6 weeks) off of 100 mg. during June and July. I was completely off by the end of July. I did not start having withdrawal symptoms (except vertigo) until about month later. The symptoms you describe sound very much like the akathisia I have been suffering from since then. Most of the references on this board to akathisia seem to indicate that everyone recovers. My impression, though, is that this takes time. I would say I am not really far enough out to advise you based on my experience. I believe 6 months is the earliest I have seen anyone speak of marked improvement with this. I'm not there yet. I have better days and worse days, but I do suffer to some degree every day. I still remain hopeful, though. My insomnia leaves me in such a state that I cannot drive, and I cannot stay at home by myself, but I keep a journal, and believe I have seen improvement in some areas. Best of luck to you in your recovery.

[luv2knit]

So I just read part of your intro. The tardive dyskenisia, I believe, may be different from the akathisia, and I believe there may be several references to it, if you do a "search". Whichever "movement" disorder, it really sucks!! Again, best of luck!!

[WiggleIt]

Thank you luv2knit.  I also believe they are different.  Basically, I've come down with every movement disorder, it seems.  Now, my right hand has trouble with fine motor control on some days.

 

I just… I never would have let ANYONE put me on meds at all if I had known I had a chance to recover my chronic pain with physical therapy alone.

 

I really hope that I am able to write by hand again someday and put on mascara.  AND write research papers and chew and swallow!!!  Everyone says i will recover, but you know how hard the wait is.

 

I have heard enough success stories about cognition returning, but it seems that a lot of the symptoms I have are considered "severe" and "rare," so I am scared.

 

Thank you for replying.  

[luv2knit]

You're welcome. Yes, the wait is hard. Also, sometimes it seems a particular symptom is gone, only to come back again. I had tremors off and on earlier, and thought they were gone for the most part, but now they seem to come back occasionally. I think maybe we have to look at our overall progress long term, and not just day to day.

[Wildflower0214]

 

 

I just feel the need to list my symptoms so I can look at them and remember what I have survived:

 

Food intolerances causing mood problems, heavy limbs, paranoia, sleep disturbance, sensations, feeling of head numbing....etc.

 

Paranoia

Intrusive thoughts

Obsessive ruminating

Reactions to over the counter medications

Burning sensations

Electrical sensations

Crawly sensations

Restlessness

Feeling drunk

Cog Fog to the point I barely knew where I was

Inability to cry

Panic

Fear

Seeing "things" eyes playing tricks on me

Some level of psychosis

Parkinson's like tremors

Urinary retention

Cavities due to poor hygiene during a couple months when I was too sick to bathe for days

Memories of traumatic past

Rage

Jolting when trying to sleep

Twitches

Nightmares

Hot/cold sweats

Derealization

Feeling like on illegal stimulant drug

PGAD

Feeling like upper and downer at the same time

Suicidal ideation

Skin rashes, reactions to lotion, deodarant, soap, shampoo.

Complete Insomnia

Waking many times during the night

Noise sensitivity

Light sensitivity

Sound sensitivity

Nausea

Loss of appetite

Inability to regulate body temp, freezing all the time

Feeling like head is numb and dead in areas

Inability to take pleasure in anything

 

 

That's all I can think of, but I think there is more..

 

Makes bootcamp in the Marines look like a birthday party.

JDM 1984 and luv2knit:

 

Wow, I have ALL of these. Coming off a tricyclic and a benzo. You can see all my symptoms in my signature below. I just want to know that it will get better. I am so sad that I let the doctors put me on these meds for a medical problem that now seems to be responding well to physical therapy.

 

I know that most people here were put on meds for mental health reasons, so I'm not sure if you are aware that tricyclic antidepressants are now being handed out like candy for things like IBS, fibro, and pelvic pain.

 

I don't know if all my Parkinsonism and jerks and twitches and restlessness come from the benzos or the TCAs, or both. I just want to know that it DOES abate. I SUPER rapid tapered everything because I was told it was okay to do so.

 

Can you please tell me it gets better?

 

Honestly, I wish I knew. I'm 5 1/2 months into all of this, and I pray it gets better. I believe I would be better if I could take some supps and I could eat. I can only eat 15 things and I think I react to some of them too, but I have to eat.

 

I don't really know how this goes for people like us, not too many in the same boat on this forum, or any forum for that matter.

 

I got worse around 3 months, then had a couple of tolerable weeks, then back down the hole becuase of a reaction to a med at the dentist. I have absolutely no idea what the time frame is, I wish I could say. The more I go through this, the more I have no idea what lies ahead.

 

I'm sorry.

[Pugknows]

JDM, I'm new and have been following your thread and Muddles, Frustrated and Iluv2knit. I can't navigate this sight at all. I'm scared because I can't breathe. Help.

[WiggleIt]

JDM, I'm new and have been following your thread and Muddles, Frustrated and Iluv2knit. I can't navigate this sight at all. I'm scared because I can't breathe. Help.

Hey Pug,

 

This site can be VERY hard to maneuver at first, which can make you feel even more desperate and lonely. I understand because the exact thing happened to me when I first started here, and I didn't know how to search for info or respond to people, and I didn't even know how to find questions that I had originally posted!

 

It can be a tricky site. Since you have already made your account, I recommend that in your settings, you select the option to automatically follow any topic you respond to.

 

Also, please know that I have experienced the difficulty breathing and it has improved. I have only been off meds for 2.5 months and breathing was a major scare for a long time. It has now improved. I have occasional breathing scares still, here and there, but it is no longer constant.

 

Please have faith that yours will also improve. If you would like to be cautious, you could go to an ear/nose/throat specialist to make sure there is nothing obstructively wrong. My sleep apnea and swallow tests came up normal, so process of elimination points to my breathing trouble as a withdrawal symptom. And since my breathing trouble has started to show better days, please have faith that yours will, too. But if you feel the need to get some non-invasive testing done to ease your mind, it is understandable.

[Wildflower0214]

JDM, I'm new and have been following your thread and Muddles, Frustrated and Iluv2knit. I can't navigate this sight at all. I'm scared because I can't breathe. Help.

Wiggle has given you some good advice. Hang in there! It gets better and a bit less frightening as time goes on. I'm so sorry.

[btdt]

 

I just feel the need to list my symptoms so I can look at them and remember what I have survived:

 

Food intolerances causing mood problems, heavy limbs, paranoia, sleep disturbance, sensations, feeling of head numbing....etc.

 

Paranoia

Intrusive thoughts

Obsessive ruminating

Reactions to over the counter medications

Burning sensations

Electrical sensations

Crawly sensations

Restlessness

Feeling drunk

Cog Fog to the point I barely knew where I was

Inability to cry

Panic

Fear

Seeing "things" eyes playing tricks on me

Some level of psychosis

Parkinson's like tremors

Urinary retention

Cavities due to poor hygiene during a couple months when I was too sick to bathe for days

Memories of traumatic past

Rage

Jolting when trying to sleep

Twitches

Nightmares

Hot/cold sweats

Derealization

Feeling like on illegal stimulant drug

PGAD

Feeling like upper and downer at the same time

Suicidal ideation

Skin rashes, reactions to lotion, deodarant, soap, shampoo.

Complete Insomnia

Waking many times during the night

Noise sensitivity

Light sensitivity

Sound sensitivity

Nausea

Loss of appetite

Inability to regulate body temp, freezing all the time

Feeling like head is numb and dead in areas

Inability to take pleasure in anything

 

 

That's all I can think of, but I think there is more..

 

Makes bootcamp in the Marines look like a birthday party.

JDM 1984 and luv2knit:

 

Wow, I have ALL of these.  Coming off a tricyclic and a benzo.  You can see all my symptoms in my signature below.  I just want to know that it will get better.  I am so sad that I let the doctors put me on these meds for a medical problem that now seems to be responding well to physical therapy.  

 

I know that most people here were put on meds for mental health reasons, so I'm not sure if you are aware that tricyclic antidepressants are now being handed out like candy for things like IBS, fibro, and pelvic pain.  

 

I don't know if all my Parkinsonism and jerks and twitches and restlessness come from the benzos or the TCAs, or both.  I just want to know that it DOES abate.  I SUPER rapid tapered everything because I was told it was okay to do so.  

 

Can you please tell me it gets better?      

 

While I am processing my response to this thread on another issue that is complicated let me give you the answer from my point of view on this easy question... it will get better. 

I had what you call the rare and the bad... or whatever.  parkinsonism... as you have used the term and more.  Of the things you have mentioned almost all of them have abated to a point most of the time they are no longer issues for me when one pops up I know what it is and tend to be bored by it more than anything ...as in 

you again.. frig off and leave me alone ... 

sometimes it will be something I have a tool for like a meditation or eating a more of a certain food to taking something out of my diet I know I should not be eating.... 

 

There are other things which are worrisome but you don't have them your don't have  any indication of ever getting them from the list I see... so we will leave them alone. 

 

All this other stuff is withdrawal it will end... when I can't say but suspect you will be a lot better in 2 years 3 for sure... if you keep away from drugs be very careful what meds you put in your body and I mean any med... check it out here first ask the Mods.... as further drug use can slow things down and mess you up.

 

As for the title of the thread CT rapid taper.. or what it use to be called... if you  are a ct or rapid taper symptoms will be more intense.. that is a given from what I have seen.  

 

It will take time but you will get better everyone I have ever seen on a wd site has improved... complete healing is another thing... but given the intensity of the early years ... everyone I have every looked at has improved with time... no exception I can think of. 

[btdt]

I think newbies learn rather quickly there are some topics that are unhelpful to them... I did learn this.. the hard way.  

Same as I learned watching the news was not good for me... same as i learned coffee would put on the floor... there is a learning curve and we all go thru it we were all newbies at one point. 

Being a newbie can also mean our cognitive functioning is not so hope as early withdrawal is like that... I think there is a short time between joining and learning where newbies should maybe be steered away from some topics rather than keeping the long sufferers in a special group maybe newbies should have like an toddler room where we keep good care of what we say... as I know from my own experience I was not fit to be in the general population. 

I know this is my opinion... and it likely sucks... but it is how I see it... 

 

As I was a childcare worker I also just had another take on this if the toddlers are kept segregated how will they ever learn the skills they need to not only navigate this board ... or real life. 

 

In a way this board does represent real life to a lot of people here it is more real than real life as not much in real life is identifiable to their experience and the people here are identifiable .. when they fit no place else they fit here.

 

I can't say that a place like this is more important to the newbie than the long term sufferer... as both have need.. sure the tapering and early (first 2-3 year) has a pattern of recovery that allows us to offer hope and support to get to that timeline. We see some results and it helps us feel good about ourselves to offer something of value to another and see them thru hard times... there is a payoff... in walking somebody thru hell to see them come out the other side.

 

For one thing it validates the old timers suffering it was not all completely in vain as a usefulness has been found for all the needless suffering... that means something. 

 

Seeing somebody come out and go on with their lives and have a good life is very very satisfying ... as some of us know if we had learned the truths of this entire fraud earlier we too may have (with support like people get here) been able to pick up the bits of our lives and had a good long life after wd.. and drugging. You see being caught a long time on drugs ... takes a good part of that chance away...I think. So it is good to save somebody the fate some of us have been stuck with ... like letting innocent people out of jail... they had a life sentence now they are free... try to beat that as a neuro...emotional high... 

 

You get free we get to stick it to pharma as they lost another life long customer and you missed hopefully the "other" issues not yet well understood that long term use can bring. 

 

After living thru wd and being completely misunderstood and often badly medicalised and labeled we know the pitfalls we try to warn console and guide it is an important part of my life as I said before who else is going to know?  who else is going to tell you?  Nobody that is who.. they don't know. 

 

We tend to know a lot more about early wd then we do about protracted wd... I think and we like it better as it is easier to see the patterns and to draw conclusions based on what is observed in 2-4 years most people do recover in this time frame and some way sooner.  

 

I wonder about protracted wd... I wonder if what we see now as from where we sit with limited understanding and less of an over view than what we have of early wd... if it is just the same as early if we had been doing this and taking good care to mark stages of protracted wd as we have early wd maybe we would be seeing patterns... similarities that we don't see now. I wonder too if we have missed a chance to give protracted a sound place to stand and be examined... perhaps having a section closed off would have been a way to do that... I don't know.  

 

Protracted withdrawal does not offer the rewards of the early wd... we don't have a lot of pwd success story  people walking the other pwd  thru a stage of disillusionment or other issues.  The payoff is not the same.. we can't see it .. we have not patterns perhaps because we have a lack of attention to this because it seems endless, when maybe it isn't maybe it just has a longer timeline we are too impatient to discover.  I do wonder. I wonder too if the health issues pwd folks have are common denominators.. in any way.  We don't see the patterns as they are all off in the corner some place or scattered through out the site.. or hiding away in pm... 

 

I am not criticizing this site it is doing amazing work.. and perhaps it has limitations imposed by the nature of the issues. I do have these thoughts that rumble around inside my head and I don't see answers to them.. that does not mean there are no answers ... it means I don't see them.  maybe somebody will reply with the answers answers and set me straight. That is the nature of these wd sites ... at least the ones that work.. we all help each other and we all are rewarded sometimes in very odd ways. 

 

peace all. 

[btdt]

ps 

sorry for the messed up bits I should learn to proof read before I post I am always impatient and afraid my post will disappear... I think too that it takes a form of extra focus and work for me to join the dots and post at times and I am fatigued by the process yes still.. some days are better than others but this is one of my pwd issues.  I have had extended times of clarity only to lose it again.  I am not sure why. Also going off topic is an issue of mine as my mind wonders case in point I came back here to say one thing...

 

that I am under no illusion we are truly denting pharmas income by people quitting their drugs as I bet for everyone that quits in a day 10 more start taking them. 

 

that is what I came back to say rather then the explanation presented above... 

 

I am not sure if this cognitive issue... is just me or other people in pwd or if it is some other health issue... I just don't know.

peace all

 

ps with all that still bugs me be it health issue related or unrelated to Ads... 

 

i am light years away from where I was when I first quit taking effexor cold turkey... that needs to be said.. that needs to be heard loud and clear... I am not where I want to be is all. 

peace

[btdt]

bells, I'll respond to a few points you made in your long post above.

 

It's not only newbies or the unsympathetic who write me when someone is being unrelentingly negative. I cannot control who writes me about what. They write me about something they think management should take care of (and a ton of other stuff, too).

 

People have different ways of reacting to the suffering of others. Each of us has at some time seemed unfeeling or harsh. Many types of reaction are authentic. People have different world views about how to cope. There is no one right way to support anyone.

 

This is an Internet forum. I wish it could replace all the love and comfort people are missing in their lives, but it cannot. While it seems like a real place, it's just an Internet forum.

 

Like every community, individuals have a lot of different needs and interests. New people are always arriving. It's impossible for me to control their behavior, nor would I want to. On very rare occasions, I reluctantly restrict people to their topics, and even rarer, ban them from the site, for the good of the community. You need to trust the perspective of the administrators and moderators on this.

 

I do not want to sequester long-term sufferers in a separate forum for many, many reasons. Sometimes people who are dwelling on their suffering are hurting themselves and this influence can hurt others.

 

The people who are having an easier time learn from those who are having a worse time, and vice versa. People who are naive learn that others have experiences and feelings that are different. People who are scared learn the truth that we are in a dangerous reality (or simply go away). Newbies become core community members. Everyone benefits from the energy of the commons.

 

Unfortunately, while we can always discuss tapering techniques with those who are in the midst of tapering, we can't do much for those who are suffering long-term post-discontinuation syndrome other than offer community and emotional support (subject to the limitations of an Internet forum). I encourage long-term sufferers to open topics in Symptoms for discussion of their special issues. This will help everyone.

 

There may be people here who find everything we can do to be unsatisfactory. I'm sorry, we do our best. You must keep in mind the limitations of the medium, the limitations of humans to understand each other, and the limitations of what can be done for suffering.

 

If you wish to communicate in a more sheltered environment, there is the personal messaging space, where you can correspond with selected friends. You can always block people that upset you with the Ignore function. And, ultimately, if participating here gives you nothing but grief, you can stop visiting.

 

I know you're unhappy here, bells, and I'm not sure I can do anything to change that. We all need to allow differences in temperament, reactions, and understanding.

" Sometimes people who are dwelling on their suffering are hurting themselves and this influence can hurt others."

I wonder if this could be a stage?  Something if we were to look closely at we would find in everyone at a certain time like we see the negativity stage in early wd. 

What do you think?

[AliG]

I agree with what you are saying. Our journeys are all different even though we are all struggling for the same end result. Like luv 2 knit I am only coming off one drug as well. But I too came off way too quickly. After five months I have tried to reinstate a tiny amount to calm my withdralws a bit but it has yet to prove affective. I am so very sorry that you are suffering so badly. I have been having a hard time as well and although i may not know exactly how you feel I can empathize to some extent. I hope you find some peace soon.

I agree.  We are all struggling for the same end result and even though our journeys are different, it's nice to have the  encouragement and support of like-minded members who understand how difficult this process can be.

[JanCarol]

I relate to about 80% of Wildflower's symptoms.  Not that I had them all at once, mind.  And the ones I didn't have, I've helped loved ones with.  I'm not a typical CT or PWS, but I'm probably always going to be sensitive to psych meds.

 

"The Happiness Trap" by Russ Harris, about ACT (Acceptance and Commitment) therapy addresses this.  I'm not saying I've mastered it, come and get it.  I'm just saying - it addresses this discontent, this forever empty, of wandering around wondering why you lost so much, and what was the point of that?  

 

It's that old Serenity prayer thing.  Change what you can, accept what you can't.  Pray to know the difference.

 

I would say BTDT, you are right on the money when you say:  

 

" Sometimes people who are dwelling on their suffering are hurting themselves and this influence can hurt others."

I wonder if this could be a stage?  Something if we were to look closely at we would find in everyone at a certain time like we see the negativity stage in early wd. 

What do you think?

I think it could be yet another withdrawal symptom.  And a darned dangerous one, as it can be self fulfilling.

 

When "false thoughts" and "Neuro feelings" arise, you've got lots of options.  You can follow them down the dark rabbit hole into madness.  You can reach out for help.  You can challenge them (this takes a really strong, usually healthy mind).  You can ignore them and distract them.

 

Which wolf is stronger?  The one you feed.

 

I hope I didn't step out of line posting here - I do feel your agony, your despair - but I also know - I cannot follow you there, because my health depends on it.  

 

Believe me, I'm not a user of CBT, I'm well beyond that.  I do use mindfulness, and I'm learning ACT - but again - it's another tool in the box, not the "final solution."  We each have to chase our own way, find what makes us who we are, and feed that.

[btdt]

I relate to about 80% of Wildflower's symptoms.  Not that I had them all at once, mind.  And the ones I didn't have, I've helped loved ones with.  I'm not a typical CT or PWS, but I'm probably always going to be sensitive to psych meds.

 

"The Happiness Trap" by Russ Harris, about ACT (Acceptance and Commitment) therapy addresses this.  I'm not saying I've mastered it, come and get it.  I'm just saying - it addresses this discontent, this forever empty, of wandering around wondering why you lost so much, and what was the point of that?  

 

It's that old Serenity prayer thing.  Change what you can, accept what you can't.  Pray to know the difference.

 

I would say BTDT, you are right on the money when you say:  

 

" Sometimes people who are dwelling on their suffering are hurting themselves and this influence can hurt others."

I wonder if this could be a stage?  Something if we were to look closely at we would find in everyone at a certain time like we see the negativity stage in early wd. 

What do you think?

I think it could be yet another withdrawal symptom.  And a darned dangerous one, as it can be self fulfilling.

 

When "false thoughts" and "Neuro feelings" arise, you've got lots of options.  You can follow them down the dark rabbit hole into madness.  You can reach out for help.  You can challenge them (this takes a really strong, usually healthy mind).  You can ignore them and distract them.

 

Which wolf is stronger?  The one you feed.

 

I hope I didn't step out of line posting here - I do feel your agony, your despair - but I also know - I cannot follow you there, because my health depends on it.  

 

Believe me, I'm not a user of CBT, I'm well beyond that.  I do use mindfulness, and I'm learning ACT - but again - it's another tool in the box, not the "final solution."  We each have to chase our own way, find what makes us who we are, and feed that.

I think it could be yet another withdrawal symptom.  And a darned dangerous one, as it can be self fulfilling.

I don't think it is up there with running the car into a cement or other dangerous issues presented in wd.  Annoying bothersome pain in the butt that needs to be looked at closely and dismantled... it is odd how we are complete opposites on how to approach it... I want to know where it came from take it down brick by brick....some times... other times I just want to stop it... I generally do one then work on the other. Both are interesting to me all kinds of tools for sure the more functional tools the better.  

As for this 

"- I do feel your agony, your despair - but I also know - I cannot follow you there, because my health depends on it.  "

Maybe you mean somebody else as I was not feeling agony or despair I was recalling it. 

always protect yourself it is your job.... 

 

I wish you peace

[tntd]

I realize that this thread hasn't been posted on in over a year but the support that I saw that you had for each other made me feel supported too and I wanted Wildflower to know that her intention in this thread worked for me. 

 

I hope that all of you are progressing well in your healing process. I have just started on my journey as of June 1 and it is hard to find stories of other people that have had to cold turkey their meds. I have found some and they give me hope. To see the strength that everyone on this forum has, both the people tapering and the ones who have cold turkeyed, helps me to be strong and know that I can get through this nightmare as well.

 

As Wildflower said and I have to agree Marine Boot Camp was a party compared to withdrawal from these drugs.

 

Peace, healing, and hugs to all.

[luv2knit]

tntd, good luck on your journey. I seldom post in this forum any more, but still receive notifications, and your post caught my eye. I am now right at 23 months off, and still have akathisia, insomnia, and quite a few other symptoms. I've also seen quite a few improvements in some symptoms. The intensity of the akathisia is perhaps 25% better, and the insomnia has gone from waking every 30-60 minutes to oftentimes every 2 hours. Rarely, I may sleep 3 or even 4 hours. It is (or can be) a long, slow process. I can see how it would make Marine Boot Camp look like a party.

 

Keep in mind that many do seem to notice an increase of symptoms (commonly at about the 4-6 month mark), and do not get discouraged if this happens to you. It will eventually lift. Some fit the "windows and waves" pattern, and others do not. I think my pattern has been more one of gradual improvement with some pretty major setbacks along the way. I have some occasional better times too (perhaps an average of about 3-4 half days and 1 or 2 full days in a 2-month time period)--not what I would really consider a "window", but I suppose that depends on your definition. Again, good luck in your journey!

[tntd]

Thanks luv2knit,

 

Thank you for your response. I'm sorry to hear that you are still struggling so much at 23 months. I experienced severe akathisia and I know that it is no fun at all, my heart goes out to you.

 

Thank you for the encouragement and the pattern of 4-6 months warning. I can't imagine things getting worse than they are right now but then I am still early on in the journey so I'm thinking even 4-6 months out a bad wave may be less than what I am experiencing now. I have noticed though that every time things go backwards it seems like things will never get better and it is easy to get dicouraged. I'm pretty much housebound and hypersensitive to most everything. Distraction is my saving grace. Having people respond is always great too

 

I hope that you will continue to improve. Thank you for the message of hope and for your kind words, they really do help.

[luv2knit]

Yes... distraction is definitely key! I have the hypersensitivities as well. I do find that when I go through an especially hard time ("wave"--if you will) it often leads to an improved baseline, so perhaps that is something to look forward to!

[tntd]

I hope you are right and the baseline is improved. 

 

I'm actually feeling pretty good at the moment. I had a bad anxious mood swinging start to the morning but I used my Alpha-Stim and felt better. Coincidence or causitive I don't know.

 

When I'm feeling better like I am right now I find I want to go out and do things. For example we need to do some shopping. I've read so much about people over doing it when they feel good though that I think I will currently stay at home and just enjoy feeling a lot less anxious. Maybe it will last longer that way???

 

It's funny because this morning when I was feeling really bad I was wondering if it was just me doing it to myself so I wouldn't have to do anything. Creating my own secondary anxiety if you will. Now I don't think so because I really want to go out. I just know I am still really hypersensitive and stores are crazy with their sounds, and light, and movement all around!!

 

Yesterday was really bad and I was really discouraged. It was so nice to hear from you. I hope that you will find some windows to enjoy. I don't know which is better, getting waves and windows or steadily going forward but slowly. I suppose they both have their pros and cons.

 

Hugs