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How do you find meaning through it all?


Christiana

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"Finding Meaning" fits really well with the randomness of the feelings I'm having right now. Maybe, just maybe, those of you that post some answers to these questions, which I really hope you will, can help out a lot of us here.

 

I guess, the big question is How do you find meaning through it all, especially when the suffering is so horrid and support is so absent, despite living the reality of whatever has gone wrong, with no timetable for it ending?

 

Oftentimes, I feel like writing a book about my journey thus far. I'm not sure if it would read more like a horror story or story of triumph over adversity though. Although, it would, most certainly, be a long one, and one that is still constantly evolving, with no end in sight .

 

The heart wrenching emotions I feel, just from reading the hundreds, if not more, of posts here and on the "other site", especially when I first became so violently ill and my body was being assaulted by so many horrific symptoms all at once all I could do was breath, leave me speechless. I reckon, that's why I don't post a lot, although, I must admit, I've learned a lot and will forever be grateful for the existence of this extremely supportive and welcoming site, especially.

 

The physical symptoms, coupled with the emotional ones, lead me to a state of confusion daily. For each and every person, here and elsewhere, with every ounce of my being, I hang onto you, with all of my heart and soul, in such a way I never imagined I could. I grieve for all that has been lost. I long for endings that entail changes for the good. I hope that someday soon the truth about the drugs will really be set free.

 

In the midst of my own suffering, I wonder a lot about what everybody, who is going through this nightmare, is doing to make it to the other side. So, I guess that's my next question. Can you share 10 things you do daily and/or regularly that honestly help you to feel better?

 

Just thinking out loud here...

 

I look at it like this. To know these things is one thing. To actually do them is another. Kind of like having faith. You can know a lot about faith. But to actually walk in faith is another story. So, when your mind and body say no (and we all know we can't just mind over matter wish away our suffering), what do you do with your time during the day and night to get you through just one more day and that truly helps?

A few questions that come to mind...There are many more, but I'll keep it simple...

 

How do you motivate yourself to do something you know is of benefit to you, when you have no motivation to begin with?

When even the most basic things seem monumental and more often than not are just thought through.

How do you connect with the world and people around you, when you already feel so disconnected?

When you want to feel normal feelings and make needed decisions on time, yet all you have is emptiness and unknowns.

How do you get the important people in your life to understand how bad your suffering is and offer you well-needed support?

When you try to explain how you really feel in detail, but it still gets you nowhere, so you eventually just give up and become isolated and lonely.

How do you manage the raw physical and mental sufferings of a wave, until at whatever time it decides to on its own, to ease up?

When physically you can barely function and mentally racing thoughts and being overstimulated lead to you having days of pure misery, never really finding a moment of real comfort.

How do you deal with the reality of the ups and downs of suffering, when you have a window, knowing it's going to shut again on you at any moment?

When you wonder about your every thought and action, if they're holding it open or closing it for you.

How do you accept TIME is your only friend and how much you need and will lose in the process, until you heal, is the great unknown?

When you realize you can't deny what's happening to you, as you sit and watch people around you pass you by, often wondering if it's as good as it's ever going to get.

 

I'm beginning my 4th year now of withdrawal. Honestly, I haven't found much that helps me to feel a lot better, even though I've sincerely tried. I wish I could say otherwise. So, I'm turning to all of you for advice, as the more time I spend suffering and digging deep down inside myself, just to get through one more day, I'm finding it's taking me much more effort. The fear of not knowing when it will all be over brings about many negative emotions within me daily, especially as I watch my life slowly and continually fade away and fall apart. Somehow, I still manage to keep fighting for the prize of the suffering ending someday though. Somehow.

Jun-Jul '09 (approx 7 wks) - 5mg/day Lexapro (drug rep samples) given by family dr for long, unended, very stressful divorce

 

Each dose taken makes sicker, think it's just body adjusting, have no clue it's severe adverse reaction at time

 

Aug '09 - pharmacy gets dr rx for, insurance won't pay, I can't afford, dr changes to Celexa, decline to take, cold turkey, necessary blessing in disguise, in hindsight at least

 

Gradually feel some better over 1-2 wks, 3rd wk horrific withdrawal symptoms start & build, see doctor & start researching internet about what's happening, figure it out, 60-70+ severe, frightening, & debilitating symptoms emerge, realize nothing can do to feel better easily or quickly, feel like & think I'm dying, reach point where doctor gets home healthcare & have to call friend to stay with & take care of, friend abandons about 1 yr & lose home healthcare

 

1st yr symptoms extremely severe, 2nd yr just somewhat better, now into 3rd yr symptoms don't seem much better, still causing horrible suffering, wax & wane in severity, sometimes almost as severe as when started, practically homebound, mostly bedbound, very hard completing simple tasks, symptoms definitely much worse 7-10 days/mo around menstrual cycle

 

Have lost vehicle & home, plus loved cat & dog had for long time, was homeless several months last winter, lived out of car, living in undesirable gov't subsidized housing now causing many troubles, have no medical & very little rx insurance, disability check & food stamps aren't enough to provide basic needs, lack any reliable personal support anymore, very isolated & all alone, have many pressing stressful things must be done, can barely or unable to complete without help don't have, even ones to help situation some, don't even have finances to get urgent necessary needed help required to help situation & self, social services is frequently visiting now, fear being polydrugged, losing everything, put into nursing home, hope & pray someone will help to keep from happening, don't know what else to do, still way to sick to return to work & college, believe I will recover, in the meantime tho have no answers except to plead for help, hope & pray someone, anyone, who truly cares does soon

 

In 32nd mo now still very bad SSRI protracted withdrawal, have only seen few signs of healing since 2nd yr passed, somehow manage to keep fighting, afraid time is running out for best tho & situation only going to get worse trying to survive on own if don't get help from someone

 

This pretty much summarizes what 49 little round white pills (if I recall correctly) have done to my life & future for now, my before & after life are drastically opposite now, both my situation & self, if only I'd known their potential, a little bit too late now tho huh?.?.?...hindsight really is 20/20 isn't it?.?.?...

 

I pray God blesses and helps each and every one of us, here and elsewhere, going through this nightmare. Amen, amen, amen.

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Christiana,

those are all very very good questions! None of them I feel equipped to answer in the moment...though I can say that I struggle with all of that too and I also have been for many years now...

 

I do regularly find both meaning and ways to cope. Am I always graceful about it? NO..absolutely not.

 

My blog is a big way I cope and on it I share many of my thoughts about coping and managing as well as what I learn.

 

I will share two posts that may be helpful. If not, just disregard. I do think a book could be written answering your questions alone.

 

So these posts may or may not help. The first is a compilation of posts with commentary answering exactly all the things I do to help myself. Maybe just one or two things will resonate with you...I hope so...I know how hard it is to find things that help...and sometimes the help is very subtle...keep looking!!:

 

Tool box for coping with psychiatric drug withdrawal syndromes

http://beyondmeds.com/2011/12/12/toolbox/

 

And another post I wrote about learning to live as best as possible while sick. This is our life right now...so that is what I try to do daily.

 

Living Well While Being Sick

http://beyondmeds.com/livingwell-while-sick/

 

If other posts I've written come to mind and you or anyone is interested I'll share more as it's a common topic on the blog.

 

Best to you and healing loving vibes that you may find some peace in this very difficult journey we've found ourselves taking.

Everything Matters: Beyond Meds 

https://beyondmeds.com/

withdrawn from a cocktail of 6 psychiatric drugs that included every class of psych drug.
 

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Hi GiaK,

 

Thank you very much for replying! I read the linked information and watched the video. Such great information!

 

Wow! You have such a big website with even more helpful information! I'll definitely be re-visiting it! Thank you for all the effort you've put forth to provide such a valuable resource for those of us suffering!

 

I hope you're having a good day today!

 

Love, Light, & Health,

Christiana

Jun-Jul '09 (approx 7 wks) - 5mg/day Lexapro (drug rep samples) given by family dr for long, unended, very stressful divorce

 

Each dose taken makes sicker, think it's just body adjusting, have no clue it's severe adverse reaction at time

 

Aug '09 - pharmacy gets dr rx for, insurance won't pay, I can't afford, dr changes to Celexa, decline to take, cold turkey, necessary blessing in disguise, in hindsight at least

 

Gradually feel some better over 1-2 wks, 3rd wk horrific withdrawal symptoms start & build, see doctor & start researching internet about what's happening, figure it out, 60-70+ severe, frightening, & debilitating symptoms emerge, realize nothing can do to feel better easily or quickly, feel like & think I'm dying, reach point where doctor gets home healthcare & have to call friend to stay with & take care of, friend abandons about 1 yr & lose home healthcare

 

1st yr symptoms extremely severe, 2nd yr just somewhat better, now into 3rd yr symptoms don't seem much better, still causing horrible suffering, wax & wane in severity, sometimes almost as severe as when started, practically homebound, mostly bedbound, very hard completing simple tasks, symptoms definitely much worse 7-10 days/mo around menstrual cycle

 

Have lost vehicle & home, plus loved cat & dog had for long time, was homeless several months last winter, lived out of car, living in undesirable gov't subsidized housing now causing many troubles, have no medical & very little rx insurance, disability check & food stamps aren't enough to provide basic needs, lack any reliable personal support anymore, very isolated & all alone, have many pressing stressful things must be done, can barely or unable to complete without help don't have, even ones to help situation some, don't even have finances to get urgent necessary needed help required to help situation & self, social services is frequently visiting now, fear being polydrugged, losing everything, put into nursing home, hope & pray someone will help to keep from happening, don't know what else to do, still way to sick to return to work & college, believe I will recover, in the meantime tho have no answers except to plead for help, hope & pray someone, anyone, who truly cares does soon

 

In 32nd mo now still very bad SSRI protracted withdrawal, have only seen few signs of healing since 2nd yr passed, somehow manage to keep fighting, afraid time is running out for best tho & situation only going to get worse trying to survive on own if don't get help from someone

 

This pretty much summarizes what 49 little round white pills (if I recall correctly) have done to my life & future for now, my before & after life are drastically opposite now, both my situation & self, if only I'd known their potential, a little bit too late now tho huh?.?.?...hindsight really is 20/20 isn't it?.?.?...

 

I pray God blesses and helps each and every one of us, here and elsewhere, going through this nightmare. Amen, amen, amen.

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I read Gia's blog. :)

 

Your message made me cry because I have no good answers. I am so physically weak right now that it's extremely difficult to be upright for very long. Even sitting up is difficult.

 

Something that hurts more than anything and just happened a minute before I read this post... I told a handful of old friends what's been going on. Not "withdrawal" but "endocrine failure", not untrue. I THOUGHT I conveyed how unwell I am, but im not one to complain or talk about my ills (aside from here).

 

My mother died yesterday in Pennsylvania. One of the friends I confided in just texted me to ask when i'll be arriving in PA. Absolutely no acknowledgment of conversation when I told them I've been sick, etc. It really messes with my mind and makes me want to scream "did anyone hear what I said??!!" Just a simple acknowledgment - not pity -would encourage ME to reassure THEM that I'll be ok and reassure myself at the same time. It's crazy-making. It seems like if one doesn't have a terminal illness/diagnosis - CANCER - s/he is healthy.

 

I know Gia has written about invisible illness. I think this invisible and unrecognized/undiagnosed/DENIED mess is even more challenging.

 

The family relationship is very fractured. Id be remiss to leave that out.

 

B

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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oh that's so terrible Barbara...I'm very sorry for your loss.

 

I hope you don't feel you have to go, but I would understand if you do...the fact is though you'd be justified to say you're too sick and no one by you needs to know that.

 

I have written about chronic illness and how people are awful with it...I've done a lot of that. It's very difficult and it's really no different from a lot of other chronic illnesses which is why I get most of my support in chronic illness circles now...they've been at it a lot longer than we have.

 

It may help to share some information with family...I started saying I had a iatrogenic brain injury and that I also have PTSD to people in general...if you can get language to describe our symptoms that shock people it's more likely they'll maybe hear how sick we are...

 

I was told by my doctor I had a brain injury and that's the best one to use...people hear that more than most...but still...people just in general do not understand what being gravely ill is like. PERIOD...and than includes cancer and other diseases that are recognized...

 

Barbara...I hope you find a way through this. best to you. xo

Everything Matters: Beyond Meds 

https://beyondmeds.com/

withdrawn from a cocktail of 6 psychiatric drugs that included every class of psych drug.
 

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oh that's so terrible Barbara...I'm very sorry for your loss.

 

I hope you don't feel you have to go, but I would understand if you do...the fact is though you'd be justified to say you're too sick and no one by you needs to know that.

 

I have written about chronic illness and how people are awful with it...I've done a lot of that. It's very difficult and it's really no different from a lot of other chronic illnesses which is why I get most of my support in chronic illness circles now...they've been at it a lot longer than we have.

 

It may help to share some information with family...I started saying I had a iatrogenic brain injury and that I also have PTSD to people in general...if you can get language to describe our symptoms that shock people it's more likely they'll maybe hear how sick we are...

 

I was told by my doctor I had a brain injury and that's the best one to use...people hear that more than most...but still...people just in general do not understand what being gravely ill is like. PERIOD...and than includes cancer and other diseases that are recognized...

 

Barbara...I hope you find a way through this. best to you. xo

 

Thank you, Gia.

 

A significant problem is that my husband is an MD, also polydrugged. He is beginnng to see the fraud in the "science" but is in denial ("spellbound"?) about the damaging effects of the drugs. I mentioned "neurological/brain damage" once and a major eyeroll ensued. He told his family that I THINK I have brain damage. In other words "it's in her head/she's self-diagnosing". Our endocrinologist has said that thyroid deficiency causes neurological damage and may resolve in 18 months. Where that timeframe came from, I'm not certain. Of course, people look to husband as "the authority". It also didn't help that endocrinologist told ME of dangers of SSRIs, but avoided the subject with MD hubby in room.

It's not at all supportive; very antagonistic.

 

One of his friends from college is a psychopharmacologist (Makela - referenced by Breggin) who has some interesting research. This topic is the elephant in the room.

 

Gaslight comes to mind. :o

 

So, in answer to your original question Christiana... at times this set of circumstances feels so bizarre (in addition to the bizarreness of withdrawal) that it feels "meant to be" and Im looking forward to seeing how the story ends. There's much more to it, odd chance encounters, synchronicities and random people telling me about past lives OUT OF THE BLUE (I used to mock such talk). So strange that it can't possibly be coincidence.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Cristiana, your post made me cry all those questions I have the same. Wish I had some answers for you but I don't. This is a long hard lonely journey. All we have is hope. I printed your post out and asked my Hubby to read it. He said I will look later, needless to say he did'nt !

 

Like you say its very lonely.

Started Seroxat(Paxil) for panic attacks in 1997 stopped the drug in 2005 tapered over 3 months ( doctors advice)

Suffered severe and protracted withdrawl ever since.

No other medication taken.

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Christiana,

 

I, too cried reading your post, i wish i had answers for us all too, its so very very sad that we all have to suffer in this way, and i agree the most frustrating part of this is, there are no time lines for recovery, the only proof we have that happens is in websites like this, from others who write about there recovery.

 

Barb, Im so sorry to hear your news, my deepest condolances to you, we are all here for you, we all wear the same size shoes here unfortunately.

Ruth, your hubby sounds like mine, later never comes lol.

 

Hope all here can have a better day today, can so associate with all of this.

Began taking 30mg Seroxat on 15th Jan 1997 for grief issues. Remained at that dosage until Dec 05, did doctor ct, akathesia set in along with being non functional and overly emotional, brain fog. Doctor prescribed prozac, propranelol and diazeapam to counteract side effects, and told me to ct those 3 after 2.5/3 months use, induced wd seizure on 2nd day after ct. Was reinstated on seroxat 20mg in april 06, remained at that dose until Nov 07 and began a very slow taper lasting 56 months, finally DRUG FREE on 11th may 2011.

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I apologize for making that about me, again.

 

Squirrel, I'm sorry your husband didnt read the printout you gave him. :( It's amazing how powerful simple acknowledgment can be. I suspect men have an extra difficult time with this because they are programmed to *fix* and solve problems.

 

You are all very special to me.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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  • Moderator Emeritus

Through it all, I have found both meaning and solace from the compassion and support I have received from total strangers online. It seems to me that the people I've seen on these boards over the years are unique in their ability to bond and comprehend one another's burdens and battles to live decent lives. We come from such different walks of life - such different circumstances, yet we do.

 

I started tapering in 2007 after 18 years of polydrugging...When I started to taper, outrage and an overwhelming desire to stop taking drugs was my major motivation. I found meaning in the struggle. Big Pharma's criminal unfairness and lack of concern for people in distress was a focus for a long time.

 

When my westie got sick and then died a horrible death, not of the fatal disease that he had contracted but of side effects of the drugs he was on to treat the symptoms, outrage was no longer enough. His impending loss was so agonizing that I was shocked out of my rut. I found buddhism online and learned to meditate. First with a Zen community in a nearby town, then on my own because I am not really a joiner of traditional practices...although it would be nice to be in a community of meditators...

 

Five years later, after kicking benzos CT, dropping Propranolol, and completing the first half of my trip down from 60mg Cymbalta, I have been stalled at 30mg for two years. I am 61. I have already lost peers to illness, accidents. I have seen (unable to help effectively) others crumble with chronic illness, dementia, despair or complacency. What I know is that this is it. This, whatever my symptoms, is life and it is precious.

 

I have learned to cherish what pleasures are within the reach of my arm. So,at this point what I can experience and enjoy now that I am not working, but am able to get around is meaningful if not always enjoyable.

 

Two years ago when I crashed trying to drop below 30mg, All of the following statements were not true, so today, things are really relatively ok, from that perspective:

 

I can sleep for six hours at a stretch. I no longer wake up in panic at 4AM.

 

I can have orgasms, which is an amazing gift after dificulties for many years.

 

I can remember the characters in and the plots of the many novels that I read.

 

I can work out with weights for 30 minutes three times per week. I can walk in the woods with my dog for over an hour.

 

I can stay on task long enough to finish a quilt.

 

I am comfortable enough attend low key group activities at which I may meet/talk to folks I haven't known for decades.

 

I have true friends who love me dearly as I love them.

 

I have a good dog, with good manners that he learned because I have the energy to stick with his training until he understands what I want him to do. (He is also a genius)

 

A lovely man, with compassion and deep knowledge of both PTSD and anxiety loves me. That is a miracle that leaves me breathless every day. I am astounded that an older, not solvent, not beautiful, not socially adept woman can meet, fall in love with and enjoy life with a lovely man.

 

I will never be 38 again. I will never learn to swing dance because of my balance issues. I probably won't be able to travel to foreign countries and climb mountains because of my - issues. But I am awake, aware, and my health is stable enough to experience nature in New England, even if I never see the rain forest in Costa Rica or an African elephant in the wild. Maybe understanding that has made what is happening around dear to me.

 

This is really far from where this thread is going, but the title got me going. Also, notice that TIME is the only thing that has changed my status/symptoms.

 

Back to lurking.

 

1989 - 1992 Parnate* 

1992-1998 Paxil - pooped out*, oxazapam, inderal

1998 - 2005 Celexa - pooped out* klonopin, oxazapam, inderal

*don't remember doses

2005 -2007   Cymbalta 60 mg oxazapam, inderal, klonopin

Started taper in 2007:

CT klonopin, oxazapam, inderal (beta blocker) - 2007

Cymbalta 60mg to 30mg 2007 -2010

July 2010 - March 2018 on hiatus due to worsening w/d symptoms, which abated and finally disappeared. Then I stalled for about 5 years because I didn't want to deal with W/D.

March 2018 - May 2018 switch from 30mg Cymbalta to 20mg Celexa 

19 mg Celexa October 7, 2018

18 mg Celexa November 5, 2018

17 mg Celexa  December 2, 2019

16 mg Celexa January 6, 2018 

15 mg Celexa March 7, 2019

14 mg Celexa April 24, 2019

13 mg Celexa June 28, 2019

12.8 mg Celexa November 10, 2019

12.4 Celexa August 31, 2020

12.2 Celexa December 28, 2020

12 mg Celexa March 2021

11 mg  Celexa February 2023

 

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{{{{{{BAXTER}}}}}}}}

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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  • Moderator Emeritus

It seems to me that the people I've seen on these boards over the years are unique in their ability to bond and comprehend one another's burdens and battles to live decent lives. We come from such different walks of life - such different circumstances, yet we do.

 

 

For me, this is the meaning behind all of it. I'm Christian and I credit this painful experience of withdrawal with making me a far more compassionate person and leading me to realize that others, regardless of religious affiliation, are capable of enormous compassion as well.

 

I believe that we are here on earth to love God and our neighbors, in that order of priority (although the two are inseparable), and going through this anguish has brought me closer to that ideal.

Psychotropic drug history: Pristiq 50 mg. (mid-September 2010 through February 2011), Remeron (mid-September 2010 through January 2011), Lexapro 10 mg. (mid-February 2011 through mid-December 2011), Lorazepam (Ativan) 1 mg. as needed mid-September 2010 through early March 2012

"Never attribute to malice that which is adequately explained by stupidity." -Hanlon's Razor


Introduction: http://survivingantidepressants.org/index.php?/topic/1588-introducing-jemima/

 

Success Story: http://survivingantidepressants.org/index.php?/topic/6263-success-jemima-survives-lexapro-and-dr-dickhead-too/

Please note that I am not a medical professional and my advice is based on personal experience, reading, and anecdotal information posted by other sufferers.

 

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So sorry if I've upset anyone. There's much I want to say, but my brain is mush today. I'll re-visit this, as soon as I'm able.

 

(((((big hugs))))) and MANY THANKS to all of you that have posted replies

 

Love, Light, & Health,

Christiana

Jun-Jul '09 (approx 7 wks) - 5mg/day Lexapro (drug rep samples) given by family dr for long, unended, very stressful divorce

 

Each dose taken makes sicker, think it's just body adjusting, have no clue it's severe adverse reaction at time

 

Aug '09 - pharmacy gets dr rx for, insurance won't pay, I can't afford, dr changes to Celexa, decline to take, cold turkey, necessary blessing in disguise, in hindsight at least

 

Gradually feel some better over 1-2 wks, 3rd wk horrific withdrawal symptoms start & build, see doctor & start researching internet about what's happening, figure it out, 60-70+ severe, frightening, & debilitating symptoms emerge, realize nothing can do to feel better easily or quickly, feel like & think I'm dying, reach point where doctor gets home healthcare & have to call friend to stay with & take care of, friend abandons about 1 yr & lose home healthcare

 

1st yr symptoms extremely severe, 2nd yr just somewhat better, now into 3rd yr symptoms don't seem much better, still causing horrible suffering, wax & wane in severity, sometimes almost as severe as when started, practically homebound, mostly bedbound, very hard completing simple tasks, symptoms definitely much worse 7-10 days/mo around menstrual cycle

 

Have lost vehicle & home, plus loved cat & dog had for long time, was homeless several months last winter, lived out of car, living in undesirable gov't subsidized housing now causing many troubles, have no medical & very little rx insurance, disability check & food stamps aren't enough to provide basic needs, lack any reliable personal support anymore, very isolated & all alone, have many pressing stressful things must be done, can barely or unable to complete without help don't have, even ones to help situation some, don't even have finances to get urgent necessary needed help required to help situation & self, social services is frequently visiting now, fear being polydrugged, losing everything, put into nursing home, hope & pray someone will help to keep from happening, don't know what else to do, still way to sick to return to work & college, believe I will recover, in the meantime tho have no answers except to plead for help, hope & pray someone, anyone, who truly cares does soon

 

In 32nd mo now still very bad SSRI protracted withdrawal, have only seen few signs of healing since 2nd yr passed, somehow manage to keep fighting, afraid time is running out for best tho & situation only going to get worse trying to survive on own if don't get help from someone

 

This pretty much summarizes what 49 little round white pills (if I recall correctly) have done to my life & future for now, my before & after life are drastically opposite now, both my situation & self, if only I'd known their potential, a little bit too late now tho huh?.?.?...hindsight really is 20/20 isn't it?.?.?...

 

I pray God blesses and helps each and every one of us, here and elsewhere, going through this nightmare. Amen, amen, amen.

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Oh no, Christiana! Your message was so beautifully written I think it touched all of us on a deep level of common ground.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Things are crap for me, probably for you too. I've been through ups and downs both on meds and off and (as I am now) mostly off...

 

Anyway I say this because I feel like I've got some perspective that helps me though maybe won't be helpful to you. But it might be.

 

 

"Finding Meaning" fits really well with the randomness of the feelings I'm having right now. Maybe, just maybe, those of you that post some answers to these questions, which I really hope you will, can help out a lot of us here.

 

I guess, the big question is How do you find meaning through it all, especially when the suffering is so horrid and support is so absent, despite living the reality of whatever has gone wrong, with no timetable for it ending?

I think of it like this. In my life before THIS I went about my days under a lot of misbeliefs. So while it's true that I don't know the timetable for this ending, I never knew or know the timetable for my current condition. So let's say five years ago I was starting a new job and saw a promotion within a five year window. This timetable is make believe. At any time, even in the next few minutes I can fall, hit my head and die. If anything I have awareness know of how naive I was to expect my condition (health) to continue indefinitely. A reasoned look reveals this was actually irrational, though understandable.

 

I think it's just my tendency to project the current condition out to forever. When times are good this not a problem, but when times are bad it's very difficult to cope with. But really the problem comes from my resistance to reality. My condition, regardless of how good/bad I feel in it, is certain to change and over a time table not under my control.

 

Oftentimes, I feel like writing a book about my journey thus far.

I think this a terrific idea.

 

Can you share 10 things you do daily and/or regularly that honestly help you to feel better?

Sure, but some of the things I do to make myself feel better don't make me any healthier, but nobody's perfect.

 

1. Talk. Hopefully to others but sometimes to myself.

2. Think about all the good and interesting things done but people way worse off than me. (like Hawking for example)

3. Eat right. What I consume has more affect on me than anything else.

4. Post on this site.

5. Keep a daily log of what I eat and take.

6. Think about what I want to do when I'm all better.

7. Distract myself. Sometimes I like sports, sometimes sports too stressful. I like comedians and watch YouTube pretty often.

8. Laugh.

9. Don't isolate. Talk to friendly people even if I have few choices and those I have are imperfect. Being alone makes me worse.

10. Get lost in my memories.

 

So, when your mind and body say no (and we all know we can't just mind over matter wish away our suffering), what do you do with your time during the day and night to get you through just one more day and that truly helps?

If both my mind and body are against it, it's not going to happen. That's just how it is for me. Eventually, doing nothing for long enough causes enough isolation distress that my mind overrules my body and I do something.

 

How do you motivate yourself to do something you know is of benefit to you, when you have no motivation to begin with?

Again, I can't. It'd be great for me to be elected governor of my state (plus our governor is sort of an embarrassment so doubly good) but I can't get motivated for that. Its not realistic right now. Somedays taking a shower is as unrealistic and I dont shower. Sometimes, the best motivation is knowing that even though I don't want to do something if I do not do it it will make me sicker. I have a lot of reflux problems and have brushed, scraped and flossed everyday but maybe two or three in the last year. I need to take care of my mouth or I will get sicker. Self interest motivates me to try to avoid more suffering.

 

How do you connect with the world and people around you, when you already feel so disconnected?

I'm very disconnected from the world. I do not watch news or keep up too much with current events. I dont have a job. I only talk to a handful of people. I don't think I need that many to survive and I have enough to survive. The world at large is silly place where people live by make believe. When I come back to it, it will be on my terms.

 

I don't miss yahoo or CNN or shopping at the mall... I have found that I'm not well enough to go connect with too many new people. This is okay. It takes a lot of time to build new relationships or professional connections and I deserve to give myself my attention. The other things I want to do are on hold. I am worth putting them on hold. It's my obligation to put myself first, no one else is likely to.

 

How do you get the important people in your life to understand how bad your suffering is and offer you well-needed support?

It's a challenge. I compartmentalism. Certain people can be supportive of certain parts, the part that they can relate to. This is somewhat complicated but I've found others have trouble being supportive of something they can't experience or understand AND that makes them feel uncomfortable talking about what's going on in their life. My sister losing her luggage in London is a problem I can only dream of but it's one I need to be supportive when she is distressed by it. Giving support to other people with their (mostly pretty minor day2day) issues is a big way that I feel supported.

 

How do you manage the raw physical and mental sufferings of a wave, until at whatever time it decides to on its own, to ease up?

Remind myself that I've always made it through each time before and it's never as bad as I fear. Otherwise, when I'm sick I let myself be sick. I listen to a CBT series for social anxiety that I find applicable to any form of distress. "oh it's you again, morning cortisol. I survived you yesterday and I plan to survive you again today."

 

How do you deal with the reality of the ups and downs of suffering, when you have a window, knowing it's going to shut again on you at any moment?

Neither the ups nor the downs have lasted. They're like the weather. Knowing they will change makes the change less upsetting. Of course, I can pervert this by forgetting it when I am feeling good and start thinking I'm healed! Then I find religion again when things get bad again. I could do a better job of keeping steady.

 

How do you accept TIME is your only friend and how much you need and will lose in the process, until you heal, is the great unknown?

Honestly, I don't think of this one like this. I have human friends and i mostly think of time in the sense of its loss. Losing time is one of the hardest things, for sure. It's also incredibly exciting to think that I have gained an appreciation of time that most people do not have. If I have ten great years in my whole life, maybe that's an amazing success. I so far haven't had the mentality or the preconditions that gave many ANY great years so far in my life. I finally have the perspective to possibly have a great year, something I think most people will never ever have.

 

I'm beginning my 4th year now of withdrawal. Honestly, I haven't found much that helps me to feel a lot better, even though I've sincerely tried. I wish I could say otherwise. So, I'm turning to all of you for advice, as the more time I spend suffering and digging deep down inside myself, just to get through one more day, I'm finding it's taking me much more effort. The fear of not knowing when it will all be over brings about many negative emotions within me daily, especially as I watch my life slowly and continually fade away and fall apart. Somehow, I still manage to keep fighting for the prize of the suffering ending someday though. Somehow.

That's terrific. I feel really similarly. I keep hanging in there and hoping for the best and doing the best I know to do. What else can I do? Give up? I haven't even started yet, no one will even notice if I give up. I think I'm worth fighting for. I think you are too. And I think I will get better. It is what it is. I hope you continue to believe too.

 

Lastly, most people as sick as we can be are unlikely to heal. I've been to a doctor who listened to my symptoms and observed me (and some labwork I brought with me) and then this doc said he'd level with me. He said that at first he suspected cancer and the more I talked the more he thought it. My CBC blew him away because as bad as I feel I'm, relative to other chronically sick people, in somewhat okay health, technically. Because the damage is iatrogenic and because of the experience of others, I KNOW I can realistically get better.

 

I've lost almost 100 lbs in the past 2 years without dieting or exercising. I, like all of us, have serious symptoms. Most people with symptoms as bad as mine have very very lousy prognoses and many are on a downward course. In my case, given time and opportunity, it's likely that my course will be up. I can't be sure of this, but it's better to hear you're likely to recover than you're likely to die soon.

 

Hang in there.

 

best,

Alex

"Well my ship's been split to splinters and it's sinking fast
I'm drowning in the poison, got no future, got no past
But my heart is not weary, it's light and it's free
I've got nothing but affection for all those who sailed with me.

Everybody's moving, if they ain't already there
Everybody's got to move somewhere
Stick with me baby, stick with me anyhow
Things should start to get interesting right about now."

- Zimmerman

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  • Administrator

I've tried to convert the disaster that withdrawal syndrome has been for me into helping and protecting others from it.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

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I've tried to convert the disaster that withdrawal syndrome has been for me into helping and protecting others from it.

 

And you are doing a PHENOMENAL JOB!

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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  • 1 month later...

Barbara I'm so sorry to hear about the loss of your mother. God Bless you and your family.

 

It'd be hard for me to answer your questions, Christiana, in a short post. But I've pretty much answered a lot of them from my own heart and spiritual experience in other topics of the section. One of the things this situation causes is a delusion of having no purpose for being whatsoever. So if you can't find what your purpose is, then you have to trust that you are under a delusion that will clear up and you'll see it. It does go away. A good purpose for all of us that are in this situation right now is to help eachother up. That will also help yourself up. Everyone has a purpose for Being and every life experience is for a purpose that we may not see yet. So have faith and hope that it will be revealed to you as you're ready. When you follow your heart, you're on the right path to fulfilling your divine purpose. There are many things I've done to help myself climb out of this pit, and they are individual posts in the section. The last post I just made about the Power of the Spoken Word is a good example.

 

In all chaos there is a cosmos, in all disorder a secret order. - Carl Jung

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

My Paxil Website

My Intro

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Christiana you have been thru soooo much, no wonder you feel the way you do. Divorce, homelessness, and the Lexapro...wow

 

It absolutely breaks my heart.

 

This is what I was told:

 

Look down at your feet. Where are they? Is there are roof over your head?

 

Bloom where you are planted.

 

Don't underestimate the power of prayer.

 

Talk your heart out to people who will listen. You need to purge your pain and fear.

 

Stick with Winners.

 

Give yourself tough love when you can. Talk yourself into moving forward. Be disciplined about this.

 

Give yourself compassion.

 

Honestly for me when I was WDing, work was my #1 Saving Grace. I had a sense of purpose and it got me out of the house. There were some lovely people there whom I confided in.

 

Think about where you want to be next year at this time, imagine you are there and work towards that goal. Give yourself something to look forward too.

 

And this may contradict my last sentence, however, in times of stress and fear, remember to do this "One Day At A Time".

 

Consider Yourself Hugged

Intro: http://survivingantidepressants.org/index.php?/topic/1902-nikki-hi-my-rundown-with-ads/

 

Paxil 1997-2004

Crossed over to Lexapro Paxil not available

at Pharmacies GSK halted deliveries

Lexapro 40mgs

Lexapro taper (2years)

Imipramine

Imipramine and Celexa

Now Nefazadone/Imipramine 50mgs. each

45mgs. Serzone  50mgs. Imipramine

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Well said Nikki. One thing also that helps, especially in those really bad times, is to remember that this is all going to change. We get through and come out the other side. Healing does happen.

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

My Paxil Website

My Intro

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  • 3 months later...

"Finding Meaning" fits really well with the randomness of the feelings I'm having right now. Maybe, just maybe, those of you that post some answers to these questions, which I really hope you will, can help out a lot of us here.

 

I guess, the big question is How do you find meaning through it all, especially when the suffering is so horrid and support is so absent, despite living the reality of whatever has gone wrong, with no timetable for it ending?

 

Oftentimes, I feel like writing a book about my journey thus far. I'm not sure if it would read more like a horror story or story of triumph over adversity though. Although, it would, most certainly, be a long one, and one that is still constantly evolving, with no end in sight .

 

The heart wrenching emotions I feel, just from reading the hundreds, if not more, of posts here and on the "other site", especially when I first became so violently ill and my body was being assaulted by so many horrific symptoms all at once all I could do was breath, leave me speechless. I reckon, that's why I don't post a lot, although, I must admit, I've learned a lot and will forever be grateful for the existence of this extremely supportive and welcoming site, especially.

 

The physical symptoms, coupled with the emotional ones, lead me to a state of confusion daily. For each and every person, here and elsewhere, with every ounce of my being, I hang onto you, with all of my heart and soul, in such a way I never imagined I could. I grieve for all that has been lost. I long for endings that entail changes for the good. I hope that someday soon the truth about the drugs will really be set free.

 

In the midst of my own suffering, I wonder a lot about what everybody, who is going through this nightmare, is doing to make it to the other side. So, I guess that's my next question. Can you share 10 things you do daily and/or regularly that honestly help you to feel better?

 

Just thinking out loud here...

 

I look at it like this. To know these things is one thing. To actually do them is another. Kind of like having faith. You can know a lot about faith. But to actually walk in faith is another story. So, when your mind and body say no (and we all know we can't just mind over matter wish away our suffering), what do you do with your time during the day and night to get you through just one more day and that truly helps?

A few questions that come to mind...There are many more, but I'll keep it simple...

 

How do you motivate yourself to do something you know is of benefit to you, when you have no motivation to begin with?

When even the most basic things seem monumental and more often than not are just thought through.

How do you connect with the world and people around you, when you already feel so disconnected?

When you want to feel normal feelings and make needed decisions on time, yet all you have is emptiness and unknowns.

How do you get the important people in your life to understand how bad your suffering is and offer you well-needed support?

When you try to explain how you really feel in detail, but it still gets you nowhere, so you eventually just give up and become isolated and lonely.

How do you manage the raw physical and mental sufferings of a wave, until at whatever time it decides to on its own, to ease up?

When physically you can barely function and mentally racing thoughts and being overstimulated lead to you having days of pure misery, never really finding a moment of real comfort.

How do you deal with the reality of the ups and downs of suffering, when you have a window, knowing it's going to shut again on you at any moment?

When you wonder about your every thought and action, if they're holding it open or closing it for you.

How do you accept TIME is your only friend and how much you need and will lose in the process, until you heal, is the great unknown?

When you realize you can't deny what's happening to you, as you sit and watch people around you pass you by, often wondering if it's as good as it's ever going to get.

 

I'm beginning my 4th year now of withdrawal. Honestly, I haven't found much that helps me to feel a lot better, even though I've sincerely tried. I wish I could say otherwise. So, I'm turning to all of you for advice, as the more time I spend suffering and digging deep down inside myself, just to get through one more day, I'm finding it's taking me much more effort. The fear of not knowing when it will all be over brings about many negative emotions within me daily, especially as I watch my life slowly and continually fade away and fall apart. Somehow, I still manage to keep fighting for the prize of the suffering ending someday though. Somehow.

 

 

Ten things off the top of my head, this is going to be difficult.

 

 

(1) I use a lot of acronyms to help engage positive thought ---F.A.C. feelings are challenges etc

 

(2)Try and spend some time meditating though I do find it difficult.

 

(3) Looking to an open ended attitude re God, afterlives, reincarnation etc.

 

(4) Collect quotes and try to benefit from them.

 

(4) Attend a gym/spa, ease back, and chat with other participants.

 

(5)Do some writing, including a book, letters to editor etc.

 

(6) Look outdoors for 'smiling clouds' and at natural beauty (free too!)

 

(7) Challenging movies and books (attention to)

 

(8)Work on being more tolerant of people. ..."Hell is other people" Jean Paul Sartre

 

(9) Need to get back into U3A, VOL/work....see 8> problem with mood swings & commitment.

 

(10) Work on the challenges of anxiety and depression turning it into a game of sorts. :)

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How do you find meaning through it all, especially when the suffering is so horrid and support is so absent, despite living the reality of whatever has gone wrong, with no timetable for it ending?

 

There is no meaning in it. I could assign meaning to it, but that is just an illusion or a perception that is not real or true. Something only has the meaning I give it. I sometimes, in difficult times, give it the meaning that it's making me stronger or more connected to my strength, forcing me to see that I am a strong survivor. But in the end, I mostly don't think about it other than it's all about getting through the days until all of this is done and I no longer have to deal with it.

 

 

So, when your mind and body say no (and we all know we can't just mind over matter wish away our suffering), what do you do with your time during the day and night to get you through just one more day and that truly helps?

 

TV, video games, read, sleep... that's really it due to being mostly bed ridden and limited in what I can do at this point.

 

 

How do you motivate yourself to do something you know is of benefit to you, when you have no motivation to begin with?

 

I don't motivate myself. I just don't. I learned that motivating myself is a form of pushing myself. It I have to motivate myself to do it that means I am going to have to push myself and that is a form of stress I don't need during my fragile recovery.

 

How do you connect with the world and people around you, when you already feel so disconnected?

 

I don't really connect beyond the internet and sometimes my friend comes over. I don't even feel like I am part of the world because I cannot do anything really at all out in the world. I live in my bedroom and that IS disconnection. It doesn't get more disconnected than that. So I accept it and move on. When my friend stops by we talk. Sometimes I message with people on the internet, but really, I am disconnected.

 

 

How do you get the important people in your life to understand how bad your suffering is and offer you well-needed support?

 

I don't get them to understand anything. They either do or don't. They see me suffering and they understand that I am. If not, then I don't want them in my life. I want them out of my life because who needs someone who can't or won't understand this is the worst things I've ever lived through? They, the people who don't understand or don't try to are not worth my time or concern. I always tried to understand what people around me were dealing with when stuff happened in their lives. I've learned that it is rare for people to do that. Now i save my understanding for myself and only the people who can show it in return. The rest are not worth it.

 

How do you manage the raw physical and mental sufferings of a wave, until at whatever time it decides to on its own, to ease up?

 

I cry. I cry a lot. I do what I can to accept it. I do what I can to reach out at times. I try to not get lost in thoughts that it will never end, but that is hard depending on the severity of the wave. Mostly, I go into a deeper emotional suffering until I accept it then I just allow it to be what it is until it passes.

 

How do you deal with the reality of the ups and downs of suffering, when you have a window, knowing it's going to shut again on you at any moment?

 

I try not to think about it. I've been through this cycle before with another health issue. So when a window comes I think of it as my normal time. When a wane comes I whine and suffer and do some self-pity (hard to not go there) then I adapt and accept it and realize it is part of the cycles of healing. I think it's all about acceptance in the end. Sure, this whole situation sucks, but when I just accept it and let it be, it feels easier and tolerable.

 

ow do you accept TIME is your only friend and how much you need and will lose in the process, until you heal, is the great unknown?

 

I don't think about it. I live in the present and aim to not look toward what the future holds. To do so is useless and generally upsetting as it keeps me from finding peace in the present because I am too busy being focused on my lack of it and also fear of future unknowns. I did that most of my life until I learned it's the worst way to live. Now, I just let things be as they are. Sometimes I fight them or struggle with them, which only creates resistance and locks me into a holding pattern of suffering. At some point I realize it's time to let go. Then it's like it instantly gets easier.

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I can't give you ten things, but two - my cat and my horse.My horse especially since the interactiob between tow minds and bodies, and the search for balance and harmony is the most meaningfull thing I have ever found.

 

Other time I try to accept the times I can't do much expect and enjoy the many little moments of pleasure in life when I can.

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