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Letter Writing Campaign --- advice


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InvisibleUnless

so, i live in the US and am planning to write a series of letters to pertinent organizations and entities regarding my withdrawal experience.  im seeking advice on who i should write, and how to style these letters.

 

i have already written to a few places, like a psychiatric clinic to tell them of their continued misdiagnoses and mistreatment and the Drug Abuse Resistance Education [DARE] program that "teaches" kids about drugs to inform them of the dangers and ease of access to prescription psychotropics, but these letters unsurprisingly received no response or acknowledgement whatsoever.  i am taking things offline and plan to send only physically mailed letters when possible, including redundant or amended copies of previous letters to places i have already written digital messages to.

 

any suggestions of who to write to, or what to include (or exclude)?  i realize this is, in some ways, potentially rather fruitless, but it seems like a meaningful step to take in my recovery process and desire to advocate to what degrees i can in my limited state of health.

 

i would also surely welcome any joint-venture plans for specific content or for having multiple members contact the same pre-agreed organizations.  post in here if you are interested, or PM me if that is more comfortable.

from 2005-2012, i spent 7 years taking 17 different psychotropic medications covering several classes.  i would be taking 3-7 medications at a time, and 6 out of the 17 medications listed below were maxed or overmaxed in clinical dosage before i moved on to trying the next unhelpful cocktail.
 
antidepressants (SSRIs, SNRIs, NDRIs, tetracyclics): zoloft, wellbutrin, effexor, lexapro, prozac, cymbalta, remeron
antipsychotics (atypical): abilify, zyprexa, risperdal, geodon
sleep aids (benzos, off-label antidepressants & antipsychotics, hypnotics): seroquel, temazepam, trazodone, ambien
anxiolytics: buspar
anticonvulsants: topamax
 
i tapered off all psychotropics from late 2011 through early 2013, one by one.  since quitting, ive been cycling through severe, disabling withdrawal symptoms spanning the gamut of the serious, less serious, and rather worrisome side effects of these assorted medications.  previous cross-tapering and medication or dosage changes had also caused undiagnosed withdrawal symptoms.
 
brainpan addlepation

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hi! I live in italy, but I am also interested in spreading the awerness on w/d. noboady takes you serously in my country if you write letters to public health organization unfortunately....I just try to talk direcly to people I know are on ADs...did you write something?

cheers

M.

06/2012 - 02/2015 CIPRALEX 10 mg (given by GP motivation: I developed left abdomen pain for ca. 2 yr probably due to MD stress) - prior to this NOT any significant episode of anxiety/depression - on medication: emotional-sexual numbness, total inability to cry, +8 kg even with going to the gym, mild fatigue -> abdominal pain gone

02/2015 - 1/04/2015 tapering from 10 mg to 0 mg because I had enough of the numbness following GP advise

05/05/2015 SUDDENLY never-had-before huge anxiety, burning skin sensation, panic, fear, not able to cry again, never-had-before insomnia, totally lost appetite, little loss of vision in one eye, sweating, chest pain, short breath, restlessness, accelerated heartbeat 

30/05/2015 reinstated 8mg (I was suggested 5 mg here, but I had a fight with my GP that he knows better...last time I gave him credibility -__- )

middle 07/2015 general improving

09/2015 quite stable 10/2015 start tapering 7mg  11/2015 6mg  12/2015 5mg 1/2016 4mg  2/2016 4mg  3/2016 3mg ->FAIL back to 4mg AGAIN.... 8/2016 3mg 8/2017 2mg  (had a very short wave in summer '17) 8/2018 2mg stable  8/2019 1mg  1/2020 tried  ~0.6 mg 1/4/2020 0mg FREE!

7/2020 till end 9/2020 MILD WD (mostly anxiety, poor sleep)

11/6/2021 13 MONTHS OFF FULL WD WAVE (anxiety, severe insomnia, total loss of appetite, deep depression, internal restlessness, sexuality gone) trying to resist 😫

SUPPLEMENTS 2021 0.5g melatonin, magnesium, eating a lot of fish + exercise, no alcol, very low caffeine, low carb

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InvisibleUnless

i dont imagine ill be taken seriously, but it is important to at least not be silent on it.  ive found that talking directly to people rarely yields results because they write you off as soon as you mention medications or things doctors disagree with you about or cannot help.  it is good to have an interactive venue so that people can ask questions and hear more about your personal struggle, though; that situation just doesnt work for most places id be writing to.

 

i wrote a few different letters to various places, specific to their role in drug use and withdrawal, and will be compiling a list of other places to send letters to.  this will cost me some stamp money, hah.

from 2005-2012, i spent 7 years taking 17 different psychotropic medications covering several classes.  i would be taking 3-7 medications at a time, and 6 out of the 17 medications listed below were maxed or overmaxed in clinical dosage before i moved on to trying the next unhelpful cocktail.
 
antidepressants (SSRIs, SNRIs, NDRIs, tetracyclics): zoloft, wellbutrin, effexor, lexapro, prozac, cymbalta, remeron
antipsychotics (atypical): abilify, zyprexa, risperdal, geodon
sleep aids (benzos, off-label antidepressants & antipsychotics, hypnotics): seroquel, temazepam, trazodone, ambien
anxiolytics: buspar
anticonvulsants: topamax
 
i tapered off all psychotropics from late 2011 through early 2013, one by one.  since quitting, ive been cycling through severe, disabling withdrawal symptoms spanning the gamut of the serious, less serious, and rather worrisome side effects of these assorted medications.  previous cross-tapering and medication or dosage changes had also caused undiagnosed withdrawal symptoms.
 
brainpan addlepation

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Futurerecovery

I will probably do something similiar. You can relate to literature. With literature and other facts you can nearly prove(!) that antidepressants could cause long-term issues. People who deny such issues considering the facts, can't think logically.
There are so many arguments.

For example just one argument for my case:
SSRIs often cause genital anesthesia. When this symptom doesn't go away, the physicians say it would be psychosomatic. Why do they say it is psychosomatic? Because nobody teached them that SSRIs could cause genital anesthesia which persists. And even if there was no literature about PSSD, when did they learn that genital anesthesia was a psychosomatic symptom? Never. There is no literature about psychosomatic genital anesthesia. So there's no reason why one should think it could be psychosomatic. Just like millions who don't suffer from Post-SSRI genital anesthesia, there are millions of depressive people who don't suffer from depression-induced genital anesthesia.
There are so many arguments.

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InvisibleUnless

is that partly to imply that maybe there would be benefit in doing more than informing on a personal level?  i didnt imagine itd necessarily be well-received to write from the viewpoint of a specifically scientific argument, though adding in a few journal DOIs with a little paragraph of explanation at the end might be a good middleground.

 

i have at least a couple healthcare-providing agencies/individuals on my list, so that might be even more appropriate for them than the more political or facilitator agencies that will be receiving letters.

 

no, wait...you didnt write that post i just read, it was just psychosomatic!

from 2005-2012, i spent 7 years taking 17 different psychotropic medications covering several classes.  i would be taking 3-7 medications at a time, and 6 out of the 17 medications listed below were maxed or overmaxed in clinical dosage before i moved on to trying the next unhelpful cocktail.
 
antidepressants (SSRIs, SNRIs, NDRIs, tetracyclics): zoloft, wellbutrin, effexor, lexapro, prozac, cymbalta, remeron
antipsychotics (atypical): abilify, zyprexa, risperdal, geodon
sleep aids (benzos, off-label antidepressants & antipsychotics, hypnotics): seroquel, temazepam, trazodone, ambien
anxiolytics: buspar
anticonvulsants: topamax
 
i tapered off all psychotropics from late 2011 through early 2013, one by one.  since quitting, ive been cycling through severe, disabling withdrawal symptoms spanning the gamut of the serious, less serious, and rather worrisome side effects of these assorted medications.  previous cross-tapering and medication or dosage changes had also caused undiagnosed withdrawal symptoms.
 
brainpan addlepation

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Futurerecovery

Yes, I think one really needs to relate to literature in order to make them believe us.

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InvisibleUnless

theoretically id agree, but ive never seen anyone acquiesce just because of journal articles.  maybe theyd make letters look less crackpot, but usually including sources reads as even more conspiratorial and delusional.  i guess i will experiment with a few places and see if there is any response to including substantiating information.  i might be best off writing a paragraph or two with excerpted portions and then references at the end, because dropping a few DOIs or studynames is liable to be ignored or dismissed entirely.

from 2005-2012, i spent 7 years taking 17 different psychotropic medications covering several classes.  i would be taking 3-7 medications at a time, and 6 out of the 17 medications listed below were maxed or overmaxed in clinical dosage before i moved on to trying the next unhelpful cocktail.
 
antidepressants (SSRIs, SNRIs, NDRIs, tetracyclics): zoloft, wellbutrin, effexor, lexapro, prozac, cymbalta, remeron
antipsychotics (atypical): abilify, zyprexa, risperdal, geodon
sleep aids (benzos, off-label antidepressants & antipsychotics, hypnotics): seroquel, temazepam, trazodone, ambien
anxiolytics: buspar
anticonvulsants: topamax
 
i tapered off all psychotropics from late 2011 through early 2013, one by one.  since quitting, ive been cycling through severe, disabling withdrawal symptoms spanning the gamut of the serious, less serious, and rather worrisome side effects of these assorted medications.  previous cross-tapering and medication or dosage changes had also caused undiagnosed withdrawal symptoms.
 
brainpan addlepation

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Hey all, 

 

we've done a email writing action: 

http://survivingantidepressants.org/index.php?/topic/9308-europeans-take-action-with-letter-madneess/

 

It's in "off-topic" to protect the privacy of the members. 

 

As a letter writing guide, I found this useful: 

https://www.amnesty.ie/our-work/letter-writing-guide

 

We'll do further letter writing actions when I'm back from holidays or if someone wants to take the lead in the meantime. Everyone is welcome to join that thread. You can even kick off your own letter writing action from that thread, benefit being there's some people subscribed to the thread already. 

 

@Invisibleunless: We dissolved the "Europe" restriction. Feel free to join us. It's just that we're writing to European authorities rather than US ones. 

 

Cheers, 

 

Laura

Feb 2015 Took venlafaxine for 5 days only... experienced withdrawal that made me completely non-functional

Mar 2015 took under 1mg of Sertraline for 10 days in an attempt to combat Venlafaxine withdrawal. Got adverse reactions. 

After stopping Sertraline, withdrawal got much worse. New, horrific symptoms. 

June 2015 Still non-functional but slowly getting better. Still brain zaps, migraines, sweating, heart racing, depression, crying spells

September 2015: 24/7 brain zaps, twitches in the face, no concentration, bad memory, language skills deteriorating. 

 

Profile feed: http://goo.gl/3g2GRn

 

Sign this petition for a blackbox warning on Prozac in Ireland:

https://www.change.org/p/leo-varadakar-hpra-the-lack-of-a-blackbox-warning-on-prozac-in-ireland-and-its-use-by-the-hse-in-under-18-s?recruiter=63289046&utm_source=share_petition&utm_medium=facebook&utm_campaign=share_for_starters_page&utm_term=des-lg-no_src-no_msg

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LoveandLight

http://www.seroxatusergroup.org.uk/brian_iddon.htm

 

Link is broken but will try and get contact

2000 - sertraline for job anxiety low confidence (17 years old) ..which turned the next 16 years into nightmare!

 

On/off sertraline severe withdrawals every time. 2014 - felt better as reduced dose of sertraline no more inner restlessness. Doctor rushed off again. Hit severe withdrawal. Lost the little I had in life. Couldn't get stable again on 12.5mg. Was switched to prozac. Had severe reaction to prozac..came off in November 2015 at 6mg as felt more confused and damaged on it..Even more withdrawal ..rage, depression, dyphoria, near constant suicidal ideation, self harm impulses, doom, concrete block in head, unable to do much of anything with this feeling in head..went back on 6mg of sertraline to see if would alleviate anything. It didn't..reduced from December to June 2016 came off at 2.5mg sertraline as was hospitalised for the severe rage, suicidal impulses, and put on 50mg lofepramine which in 2nd week reduced all symptoms but gave insomnia which still have..psych stopped lofepramine cold turkey..no increased withdrawal symptoms new symptoms from lofepramine except persistant insomnia which has as side effect.

 

Taking Ativan for 8 months for the severe rage self harm impulses 1-3 times a week (mostly 2 times a week) at .5mg. Two months (I'm unsure exactly when the interdose started to happen) ago interdose withdrawal seemed to happen..2 days I think after the Ativan.

 

 

Nightmare that could have been avoided!

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  • 2 weeks later...

What if we each adopted a legislator in our governments, with the goal of convincing them of what we know so well?   We'd get better at it as we went along, and we'd eventually know how to present the story efficiently. If pharma can peddle harmful drugs and fake diseases, we should be able to give away helpful, true information.

2009: Cancer hospital said I had adjustment disorder because I thought they were doing it wrong. Their headshrinker prescribed Effexor, and my life set on a new course. I didn't know what was ahead, like a passenger on Disneyland's Matterhorn, smiling and waving as it climbs...clink, clink, clink.

2010: Post surgical accidental Effexor discontinuation by nurses, masked by intravenous Dilaudid. (The car is balanced at the top of the track.) I get home, pop a Vicodin, and ...

Whooosh...down, down, down, down, down...goes the trajectory of my life, up goes my mood and tendency to think everything is a good idea.
2012: After the bipolar jig was up, now a walking bag of unrelated symptoms, I went crazy on Daytrana (the Ritalin skin patch by Noven), because ADHD was a perfect fit for a bag of unrelated symptoms. I was prescribed Effexor for the nervousness of it, and things got neurological. An EEG showed enough activity to warrant an epilepsy diagnosis rather than non-epileptic ("psychogenic") seizures.

:o 2013-2014: Quit everything and got worse. I probably went through DAWS: dopamine agonist withdrawal syndrome. I drank to not feel, but I felt a lot: dread, fear, regret, grief: an utter sense of total loss of everything worth breathing about, for almost two years.

I was not suicidal but I wanted to be dead, at least dead to the experience of my own brain and body.

2015: I  began to recover after adding virgin coconut oil and organic grass-fed fed butter to a cup of instant coffee in the morning.

I did it hoping for mental acuity and better memory. After ten days of that, I was much better, mood-wise. Approximately neutral.

And, I experienced drowsiness. I could sleep. Not exactly happy, I did 30 days on Wellbutrin, because it had done me no harm in the past. 

I don't have the DAWS mood or state of mind. It never feel like doing anything if it means standing up.

In fact, I don't especially like moving. I'm a brain with a beanbag body.   :unsure:

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InvisibleUnless

"convincing"?  slip in a few dozen hundreds with the letter like all their other constituents that "convince" them of things?

 

i dont think its a bad plan, though taking the approach of trying to make someone believe in something is more hardline than just trying to get them to see there is a reason to be concerned (and maybe willing to address) in general.

 

right now i dont have the patience or mindset of being so individualistic, though i think that approach could work really well if you strike upon the right candidate.

 

im exhausted from dealing with doctors, but ill regain some will in the next weeks and months.

from 2005-2012, i spent 7 years taking 17 different psychotropic medications covering several classes.  i would be taking 3-7 medications at a time, and 6 out of the 17 medications listed below were maxed or overmaxed in clinical dosage before i moved on to trying the next unhelpful cocktail.
 
antidepressants (SSRIs, SNRIs, NDRIs, tetracyclics): zoloft, wellbutrin, effexor, lexapro, prozac, cymbalta, remeron
antipsychotics (atypical): abilify, zyprexa, risperdal, geodon
sleep aids (benzos, off-label antidepressants & antipsychotics, hypnotics): seroquel, temazepam, trazodone, ambien
anxiolytics: buspar
anticonvulsants: topamax
 
i tapered off all psychotropics from late 2011 through early 2013, one by one.  since quitting, ive been cycling through severe, disabling withdrawal symptoms spanning the gamut of the serious, less serious, and rather worrisome side effects of these assorted medications.  previous cross-tapering and medication or dosage changes had also caused undiagnosed withdrawal symptoms.
 
brainpan addlepation

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