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

[Wildflower0214]

I feel like my experience is very much different than a lot of people's because of the rate I had to come off of drugs. Sometimes, I am totally frustrated reading stories of how well people have coped, and I feel like I'm falling short, then I look at their drug history and realize, we are not in thre same situation.

 

We are all on a journey to get through the bumpy waves of WD. But the truth is some of us are on motor boats in choppy water trying to get to shore, and some of us are paddling row boats in a tropical storm, trying to keep paddling as we try not to hurl over the side of the boat. The goal may be the same, and there are similarities in our journey, but the experience is not the same. It's just not.

 

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

[luv2knit]

I agree, JDM. I am only coming off one AD, and in that respect, I'm not in the same boat either. I did, however, come off much too quickly, and by the time I realized this, it was too late to really be able to do anything about it. I guess you could say I'm just getting started--four months out from going off, and three months since withdrawal started, but it feels like it's been much longer

[Frustrated]

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.

[luv2knit]

I too asked advice about reinstating, but was afraid it would harm rather than help. In the end, I decided against it. I also have akathisia, and from what I have read, that sort of throws a monkey wrench into the works too. I was under the impression that with akathisia, reinstating was less likely to be successful. Don't know if that's true or not.

[Frustrated]

If the reinstatement eases symptoms it will be worth it but if I end up suffering anyway I will be angry because I will have to taper off that amount. I may have gambled and lost on this one. It has only been less that a week. Time will tell. Fingers crossed.

[luv2knit]

Perhaps it will work for you. I was trying to read between the lines when I had that discussion, and I felt like perhaps it was not advisable for me. As bad as my symptoms and akathisia have been, I am convinced I made the right decision for me, because I am often able to string two or three "decent" days together before having a bad day or two. Even on the decent days, I am not functional, and can't drive, but at least I am not totally miserable. My brain fog, etc. (inability to drive) is greatly due to the insomnia, which has kept me from getting more than 2-4 hours of sleep most nights for the past three months.

[Frustrated]

Yes the lack of sleep is huge. I wake up several times during the night and when I finally seem to doze off my four year old grandaughter wakes and I am up again. I have been raising her for three years so there is no escaping the chatting preschooler at three AM. I do not have the degree of insomnia that others have reported but it is enough so that I never feel truly rested. Plus our bodies do repairs during our sleep cycle so lack of sleep certainly doesn't help our cause.

[Wildflower0214]

Yes, all of us have different stories, but I feel like those of us who are having the crap kicked out of us on a fairly regular basis should have a place to connect without someone who has not been in our shoes telling us we need to be "positive". There is a need for hope no doubt, but sometimes it is harder than others.

[Frustrated]

AGREED! No one understands any of what I am going through. I feel alone in my struggle . It helps me a great deal to connect on this forum and have others to talk to and to ask questions about things that scare me. I don't think anyone that knows me is in a position to tell me to keep positive because they have no clue about what I go through. My doctor is the most clueless. I apreciate your views and agree that only those going through similar experiences are really in a place to be able to offer genuine support. I really hope you catch a break soon.

[luv2knit]

I pray we all catch a break soon. There is a guy on the Zoloft group on FB who has been through this, akathisia and all. His situation is very similar, except he was on 7 years, and I was on for 20, and his withdrawal is over and done. First of all, I really don't feel comfortable discussing symptoms with a guy. Second, even though I'm pretty sure I am 15-20 years older than him, I don't want him thinking I am hitting on him, and also, it's not a withdrawal board... He's pretty much told his story, and I don't feel like trying to press him for more detail.

[Frustrated]

Lol gotcha. I am 44 so I am likely older than most as well. I don't feel at ease discussing some of my more mental symptoms because they scare the crap out of me and I don't want someone to tell me that I am truly losing it. The intrusive thoughts are the worst. Some of the things that pop into my mind are horrible. Perhaps they stem from a legitimate fear but get amped up and distorted in withdrawl. Either way I don't think sharing that would be comfortable at all. I find it comforting reading others' symptoms and when they occured because sometimes I wonder how I could possibly be feeling this bad after over five months. Then I see that others had a crash at four or five month too and it makes me feel better about feeling horrible.

[luv2knit]

Yes--I am 60... Lol. I keep being concerned that I am going backwards. I basically originally had one decent day and one bad day--alternating... Then a couple of decent days and a bad day, and I recently had a wave of almost a whole week... Don't know... Is there a particular point that most people tend to go backward... Or is there any pattern?

[Frustrated]

No sure on that. I hit a wave almost two weeks ago and it doesn't want to let go. I am hiping it will soon. I seemed to co e with my withdrawls pretty well the first few months and then it became harder. Then at five months i hit a huge wave that is really challenging my sanity and my body. I am praying month six is better.

[luv2knit]

Ugh Hoping the one I just had will be one of the worst I go through, but probably wishful thinking.

[luv2knit]

The guy on the Zoloft board said the worst of his akathisia was 6 months--then about 8 months to a lesser degree. His entire process was a little over 2 years.

[Frustrated]

Ugh making it to 8 months seems impossible let alone 2 years. Especially chasing a 4 year old around.

[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.

[Wildflower0214]

AGREED! No one understands any of what I am going through. I feel alone in my struggle . It helps me a great deal to connect on this forum and have others to talk to and to ask questions about things that scare me. I don't think anyone that knows me is in a position to tell me to keep positive because they have no clue about what I go through. My doctor is the most clueless. I apreciate your views and agree that only those going through similar experiences are really in a place to be able to offer genuine support. I really hope you catch a break soon.

Thank you! I hope you do too. I appreciate their intention, but it's just not helpful sometimes. It's like someone who has a cold trying to encourage someone with pneumonia, and telling them they just need to "cope better" it's just not helpful. Sometimes, silence is better, to admit you have no answers but acknowledge the pain and validate it.

[Frustrated]

Wow I never sat and made a list of symptoms but I can check off three quarters of your list including food intolerances. I was beginning to question some of my symptoms but I guess there are others who suffer them as well. Thanks for jotting down your list. I am so sorry you suffer all those things but glad to know I am not the only one. Sorry if that sounds bad. Don't mean it that way.

[luv2knit]

Yes. I can relate to about 3/4 of the list too. I don't have food intolerances, but I can't take any supplements I was not already on before withdrawal. Fortunately I was on some of the key ones!!

[Altostrata]

Yes, all of us have different stories, but I feel like those of us who are having the crap kicked out of us on a fairly regular basis should have a place to connect without someone who has not been in our shoes telling us we need to be "positive". There is a need for hope no doubt, but sometimes it is harder than others.

 

I'm not sure what you're getting at here, JDM.

 

While we acknowledge the injuries, the staff here tries to get people focused on healing rather than their injuries. Otherwise, the difficulties can be overwhelming and that sense of being overwhelmed and hopeless adds to the injuries.

 

You can be as negative as you like here, the staff just won't be able to respond to you in any meaningful way. Ethically, we cannot agree with a person who thinks they'll never heal, it would be like adding to the injury.

 

If someone believes they're doomed, what can be said? None of us can see into the future. Both "Yes, you're doomed" or "No, you'll recover shortly" are untruths.

 

Expressions of unrelenting hopelessness are very, very hard on the staff. We all have problems of our own. Each struggles courageously with their own problems while doing what they can as volunteers here. We all know how difficult it can be.

 

If you think silence from the staff is better: You've got it. I'll let them know that's the policy from now on.

 

Unrelenting negativity also distresses other members. I know because I get personal messages in these situations from onlookers asking me to do something. In very rare instances, I've asked unrelentingly negative people to post only in their Intro topics rather than all over the site, where they might hurt other people. They can still converse with friends who can follow the Intro topic and be there instantly whenever a new post is made, or in personal messages.

 

Personally, I've been through the mill for many years. I've been in everyone's shoes. Sometimes kind words and supplements are of no help, it's true. Ultimately, we each have to heal ourselves.

 

I hope you are not saying you are not getting enough understanding here, because I would find that very, very discouraging.

[Altostrata]

I changed the title of this topic to reflect its content, so other community members will join in if they care to.

 

(A topic about symptoms after cold turkey or rapid taper would be a good one, but this is not that topic.)

[Wildflower0214]

 

 

Yes, all of us have different stories, but I feel like those of us who are having the crap kicked out of us on a fairly regular basis should have a place to connect without someone who has not been in our shoes telling us we need to be "positive". There is a need for hope no doubt, but sometimes it is harder than others.

I'm not sure what you're getting at here, JDM.

 

While we acknowledge the injuries, the staff here tries to get people focused on healing rather than their injuries. Otherwise, the difficulties can be overwhelming and that sense of being overwhelmed and hopeless adds to the injuries.

 

You can be as negative as you like here, the staff just won't be able to respond to you in any meaningful way. Ethically, we cannot agree with a person who thinks they'll never heal, it would be like adding to the injury.

 

If someone believes they're doomed, what can be said? None of us can see into the future. Both "Yes, you're doomed" or "No, you'll recover shortly" are untruths.

 

Expressions of unrelenting hopelessness are very, very hard on the staff. We all have problems of our own. Each struggles courageously with their own problems while doing what they can as volunteers here. We all know how difficult it can be.

 

If you think silence from the staff is better: You've got it. I'll let them know that's the policy from now on.

 

Unrelenting negativity also distresses other members. I know because I get personal messages in these situations from onlookers asking me to do something. In very rare instances, I've asked unrelentingly negative people to post only in their Intro topics rather than all over the site, where they might hurt other people. They can still converse with friends who can follow the Intro topic and be there instantly whenever a new post is made, or in personal messages.

 

Personally, I've been through the mill for many years. I've been in everyone's shoes. Sometimes kind words and supplements are of no help, it's true. Ultimately, we each have to heal ourselves.

 

I hope you are not saying you are not getting enough understanding here, because I would find that very, very discouraging.

No, the mods have been great. No complaints. Couldn't have asked for more at all. Not to mention you all are volunteer, and I cannot imagine how much time you all give. I have nothing but respect for all of you. Absolutely. It has NOTHING to do with the mods at all.

 

I've had people respond to my thread who obviously did not read my drug history, and it is frustrating. I'm sure I blow it way out of proportion because of my being touchy at this point. Im sure this is a huge factor.

 

I guess I just never realized what a difference the CT made until I got into the big waves of WD. And it never clicked with me before that we are all going through the similar experiences, but to a different degree. So, it was like comparing apples to oranges.

 

I don't think I am hopeless. I have moments of complete despair, but I know that there is an end in sight, maybe years. But still an light at the end of the tunnel.

 

Rhi and Skyler have been amazing in helping me with the Ativan. They were very patient in explaining many things to me. I surely do appreciate it. Petu has been very encouraging, and you did your best for me when I showed up in a heap when I first found this site. Jemima has also been encouraging.

 

Again, nothing but gratitude to the mods.

 

I'm sorry if it sounded that way, absolutely not my intention.

[Altostrata]

Oh, okay, I would feel terrible if you thought we were all out-of-touch smiley faces. Plus, there's another withdrawal site that I cannot mention that does not believe in post-acute withdrawal syndrome and will force you into positive-thinking cognitive behavior therapy to deal with your delusions of suffering.

 

I don't want anyone to think we have anything in common with that site!

 

As you know, the Web is a big place, we are all newbies in one form or another. It takes time for people to learn about withdrawal when they come here. (You may have noticed that we have to debunk the same myths over and over.) Someone parachuting in from the Web might be trying to be helpful without understanding, yes.

 

We were all clueless once. It's always a joy to me to see people evolving from newbie to pillar of the community. Some of you who are reading this know exactly what I mean!

 

All you need to do in those situations is politely remind the person that he or she is a newbie and you're talking about something else. Or, simply ignore the post. If the person is extremely annoying, you can put them in your "Ignore" list (in your Settings) and they will disappear from your view. You can always de-ignore them in a few months when they've become less clueless.

[Wildflower0214]

Oh, okay, I would feel terrible if you thought we were all out-of-touch smiley faces. Plus, there's another withdrawal site that I cannot mention that does not believe in post-acute withdrawal syndrome and will force you into positive-thinking cognitive behavior therapy to deal with your delusions of suffering.

 

I don't want anyone to think we have anything in common with that site!

 

As you know, the Web is a big place, we are all newbies in one form or another. It takes time for people to learn about withdrawal when they come here. (You may have noticed that we have to debunk the same myths over and over.) Someone parachuting in from the Web might be trying to be helpful without understanding, yes.

 

We were all clueless once. It's always a joy to me to see people evolving from newbie to pillar of the community. Some of you who are reading this know exactly what I mean!

 

All you need to do in those situations is politely remind the person that he or she is a newbie and you're talking about something else. Or, simply ignore the post. If the person is extremely annoying, you can put them in your "Ignore" list (in your Settings) and they will disappear from your view. You can always de-ignore them in a few months when they've become less clueless.

Gotcha! Will do that with the ignore preference. Glad I cleared up the confusion with you.

 

Thanks a bunch again for the support.

 

(Yes, I was a newbie, a totally clueless a**) now I know better. Part of the journey I'm sure.

[Altostrata]

Think about what's it's like from the point of view of the mods. We have to teach the same lessons over and over.

 

I so appreciate it when more seasoned community members help with this.

[luv2knit]

I consider myself a newbie, and I have found more in common on this thread than anything else since I have been here. I will try to explain that where it makes sense. Someone may comment on my intro., and I will try to look at their story, but find it is pages and pages that I am unable to wade through. I want to respond to their support, and be supportive in return, but it usually just ends up with me saying basically nothing, because I don't know what their story really is. Here we have a couple of ladies who have stated what they are going through--in a nutshell--and I can definitely relate. I hope my part in this has not upset anyone--either moderators or other members. I certainly didn't look at it as anything negative. In fact, quite the opposite for me.

[Petunia]

I'm glad your issue here isn't with staff JDM, I was wondering if I had written something which upset you.  Its not easy to find a balance between empathy and encouragement.

 

I sometimes think that a separate section, members only, for long term, protracted withdrawal, CT's and serious cases would be a good idea.  Somewhere that members can be as negative as they want without feeling like they have to sugar coat their experience and keep up a positive attitude.  But in the long run, I'm not sure how helpful that would really be.

 

I sometimes visit a protracted withdrawal section on another forum, not often, because it can easily make me feel even more hopeless than I already am, but at times, I just feel like I need some extra validation and to be reminded that I'm not alone in what I'm going through.  The negativity, hopelessness, and feelings of complete despair can be a very real part of withdrawal and completely beyond our control, I agree that it should be safe to express these feelings without being shamed or criticized.

 

Just for the record (JDM), I've experienced every one of the symptoms in your list, plus a few more, except PGAD and urinary retention. I've also been going through this for over 3 years, 4 if I counted the time between stopping Lexapro and completely crashing at the end of 2011.

 

I'm glad you started this thread because I agree with you, there are some very real differences between the experiences of people who are tapering properly, and doing relatively well, and those of us in a more unfortunate situation.

[Frustrated]

I quite enjoyed talking with you today luv2knit. I find you quite pleasant. I would be glad to speak with you anytime, even if it is just to say hello.

[luv2knit]

Thank you, Frustrated! Same here!

[Wildflower0214]

I consider myself a newbie, and I have found more in common on this thread than anything else since I have been here. I will try to explain that where it makes sense. Someone may comment on my intro., and I will try to look at their story, but find it is pages and pages that I am unable to wade through. I want to respond to their support, and be supportive in return, but it usually just ends up with me saying basically nothing, because I don't know what their story really is. Here we have a couple of ladies who have stated what they are going through--in a nutshell--and I can definitely relate. I hope my part in this has not upset anyone--either moderators or other members. I certainly didn't look at it as anything negative. In fact, quite the opposite for me.

Yes!!! That's what I was hoping for!!! Just get a couple of us, or whoever needs it and stay in support for one another!!

 

yes! That makes me happy!!! I'm so glad it has helped you!

 

I think I just wasn't clear in my description, and it sounded bad. But all cleared up! Mods are GREAT! A def lifeline, especially in the beginning.

[Wildflower0214]

I quite enjoyed talking with you today luv2knit. I find you quite pleasant. I would be glad to speak with you anytime, even if it is just to say hello.

Thanks for being here! We need one another!

[Wildflower0214]

I'm glad your issue here isn't with staff JDM, I was wondering if I had written something which upset you. Its not easy to find a balance between empathy and encouragement.

 

I sometimes think that a separate section, members only, for long term, protracted withdrawal, CT's and serious cases would be a good idea. Somewhere that members can be as negative as they want without feeling like they have to sugar coat their experience and keep up a positive attitude. But in the long run, I'm not sure how helpful that would really be.

 

I sometimes visit a protracted withdrawal section on another forum, not often, because it can easily make me feel even more hopeless than I already am, but at times, I just feel like I need some extra validation and to be reminded that I'm not alone in what I'm going through. The negativity, hopelessness, and feelings of complete despair can be a very real part of withdrawal and completely beyond our control, I agree that it should be safe to express these feelings without being shamed or criticized.

 

Just for the record (JDM), I've experienced every one of the symptoms in your list, plus a few more, except PGAD and urinary retention. I've also been going through this for over 3 years, 4 if I counted the time between stopping Lexapro and completely crashing at the end of 2011.

 

I'm glad you started this thread because I agree with you, there are some very real differences between the experiences of people who are tapering properly, and doing relatively well, and those of us in a more unfortunate situation.

I'm so sorry for your prolonged suffering Petu.

I often wonder how you do it.

 

My point in starting the thread was two fold. The first was to create a place where we could be as negative as needed without judgement. Second, to narrow the audience to people who more closely share our experiences so that when we need encouragement, we know it is coming from someone who has been in our position, or something equally as miserable. It was intended to bring validation and hope.

 

And, from luv's response, that is exactly what it is already doing! I'm so pleased!

[Wildflower0214]

I changed the title of this topic to reflect its content, so other community members will join in if they care to.

 

(A topic about symptoms after cold turkey or rapid taper would be a good one, but this is not that topic.)

Agreed. Newbies is better.

[Wildflower0214]

Wow I never sat and made a list of symptoms but I can check off three quarters of your list including food intolerances. I was beginning to question some of my symptoms but I guess there are others who suffer them as well. Thanks for jotting down your list. I am so sorry you suffer all those things but glad to know I am not the only one. Sorry if that sounds bad. Don't mean it that way.

No! Don't be sorry! That's is the point of this thread!

[luv2knit]

IMO it's easy to get frustrated and be misunderstood. I agree this can be helpful, if the meaning is understood.