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Glaucus: Still suffering tremendously and in need of support


Glaucus

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I was put on ADs over twenty years ago following a bad reaction to a routine operation.  Over the years the drugs were swapped and more were added in the typical way.  I ended up on clonazepam and effexor for six years, and was detoxed off the clonazepam in 2009.  I then tapered the effexor via crossover to celexa, and came off in Dec 2010.  
 
I am therefore 2 years and 10 months drug-free, and almost five years off the clonazepam.
 
I am still very very ill, and have been all this time.  My worst symptoms are a burning, buzzing neuropathy, like being stung all over; dreadful flu-like symptoms; loud constant tinnitus, plus some hearing loss; inability to think clearly with short and long term memory loss; extreme agitation and feelings of hostility and anger; random twitches all over my body; racing negative thoughts; strange OCD type thinking; state of organic fear; agoraphobia etc etc
 
I had none of this before withdrawal; I used to run a large school and was happily married with four kids.  I have had periods when things are easier, mostly the summer when I can go to the sea and sit in the sunshine.  But now I spent most of my time at home, trying to do anything to distract.  I can't socialise or take my children out or exercise or do any of the normal stuff yet.
 
I have had lots of good support and encouragement but was led to believe that I would be much much better by now.  Yet I am not.
 
In order to keep going (without risking going back on some drugs) I need to believe that things will improve.  Hope has kept me going in the past but now it is running dry.
 
I'd therefore love to hear from people who were as bad as me, for as long as me - I don't want to be a lonely outlier at the very edge of the bell curve.  If I can convince myself that this is not unusual (especially given the time I was on on) and that recovery will still happen then I think I can keep going despite the tremendous suffering.
 
Thank you.

Edited by scallywag
tags

On various SSRIs/SNRIs from 1990 to Dec 2010; drug free since then.  Also on clonazepam 2003 to 2009; taken off via horrific detox.  Crossed over from Effexor to Celexa in 2009, then tapered off over 1.5 yrs.

 

Have had glimpses of improvements but still going through a brutal withdrawal...

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Hi Glaucus,

 

Welcome and thank you for posting an introduction.

 

I'm sorry you have been suffering for such a long time, I think very few of us on here expected to find ourselves going through what we have over the months and years.

 

Personally, I've been suffering with life altering withdrawal symptoms since November, 2011, but my situation is fairly complex, with several medications involved and I've only been off all medications for 5 months.  But it has been over 3 years since I last took an anti-depressant, apart from trying to reinstate for several days earlier this year.  I tapered off Lexapro much too fast after 14 years of being on ADs.

 

If I look back at the way I was 18 months ago, its obvious that I have improved, while I still have most of the same symptoms, they are not as severe, but the fact that its been going on so long and that the quality of my life hasn't improved, makes it seem like nothing has changed.

 

But there are members here with situations more similar to yours, and I think that is what you are looking for.

 

How long was your taper from effexor to celexa, and then off celexa?

 

Putting a short version of your drug and tapering history in your signature helps people understand your context when they read your posts, instructions here:

 

http://survivingantidepressants.org/index.php?/topic/893-please-put-your-withdrawal-history-in-your-signature/

 

You will find a lot of friendly support here and no longer need to feel alone in your protracted withdrawal.

 

Petu.

I'm not a doctor.  My comments are not medical advise. These are my opinions based on my own experience and what I've learned. Please discuss your situation with a medical practitioner who has knowledge of tapering and withdrawal...if you are lucky enough to find one.

My Introduction Thread

Full Drug and Withdrawal History

Brief Summary

Several SSRIs for 13 years starting 1997 (for mild to moderate partly situational anxiety) Xanax PRN ~ Various other drugs over the years for side effects

2 month 'taper' off Lexapro 2010

Short acute withdrawal, followed by 2 -3 months of improvement then delayed protracted withdrawal

DX ADHD followed by several years of stimulants and other drugs trying to manage increasing symptoms

Failed reinstatement of Lexapro and trial of Prozac (became suicidal)

May 2013 Found SA, learned about withdrawal, stopped taking drugs...healing begins.

Protracted withdrawal, with a very sensitized nervous system, slowly recovering as time passes

Supplements which have helped: Vitamin C, Magnesium, Taurine

Bad reactions: Many supplements but mostly fish oil and Vitamin D

June 2016 - Started daily juicing, mostly vegetables and lots of greens.

Aug 2016 - Oct 2016 Best window ever, felt almost completely recovered

Oct 2016 -Symptoms returned - bad days and less bad days.

April 2018 - No windows, but significant improvement, it feels like permanent full recovery is close.

VIDEO: Where did the chemical imbalance theory come from?



VIDEO: How are psychiatric diagnoses made?



VIDEO: Why do psychiatric drugs have withdrawal syndromes?



VIDEO: Can psychiatric drugs cause long-lasting negative effects?

VIDEO: Dr. Claire Weekes

 

 

 

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  • Moderator Emeritus

Hi Glaucus

 

Welcome to the site. I'm sorry to hear you have been through so much. It's a hard road and very frustrating. I haven't been so consistently unwell as you have but I have had my moments. Things do get better. I suspect some of the people who have walked a similar road to you will chip in. In the mean time, perhaps read through some of the stories in the success section for inspiration.

 

The other thing I would say is that this is a very supportive, empathic community so even if we can't ease your suffering, please know you're not alone

 

Dalsaan

Please note - I am not a medical practitioner and I do not give medical advice. I offer an opinion based on my own experiences, reading and discussion with others.On Effexor for 2 months at the start of 2005. Had extreme insomnia as an adverse reaction. Changed to mirtazapine. Have been trying to get off since mid 2008 with numerous failures including CTs and slow (but not slow enough tapers)Have slow tapered at 10 per cent or less for years. I have liquid mirtazapine made at a compounding chemist.

Was on 1.6 ml as at 19 March 2014.

Dropped to 1.5 ml 7 June 2014. Dropped to 1.4 in about September.

Dropped to 1.3 on 20 December 2014. Dropped to 1.2 in mid Jan 2015.

Dropped to 1 ml in late Feb 2015. I think my old medication had run out of puff so I tried 1ml when I got the new stuff and it seems to be going ok. Sleep has been good over the last week (as of 13/3/15).

Dropped to 1/2 ml 14/11/15 Fatigue still there as are memory and cognition problems. Sleep is patchy but liveable compared to what it has been in the past.

 

DRUG FREE - as at 1st May 2017

 

>My intro post is here - http://survivingantidepressants.org/index.php?/topic/2250-dalsaan

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Thank you Petu and Dalsaan.  Dalsaan - funny that you couldn't sleep on effexor - that was my issue too and why the idiot doc gave me clonazepam.  Oh well...

 

And yes I believe that things do get better; most people who are on for shorter, are not poly-drugged or yanked off cold turkey manage ok.  But am looking forward to connecting with a few more outliers like me.

On various SSRIs/SNRIs from 1990 to Dec 2010; drug free since then.  Also on clonazepam 2003 to 2009; taken off via horrific detox.  Crossed over from Effexor to Celexa in 2009, then tapered off over 1.5 yrs.

 

Have had glimpses of improvements but still going through a brutal withdrawal...

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Still hoping to hear from others who are three or more years out and who are experiencing healing... 

 

Brutal, brutal akathesia today, so hard to believe this is still the drugs after all this time.  But we soldier on.

On various SSRIs/SNRIs from 1990 to Dec 2010; drug free since then.  Also on clonazepam 2003 to 2009; taken off via horrific detox.  Crossed over from Effexor to Celexa in 2009, then tapered off over 1.5 yrs.

 

Have had glimpses of improvements but still going through a brutal withdrawal...

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  • 8 months later...

Dear Glaucus. I just wanted to find out how you are doing? Have you seen any improvements recently?

 

Im 22 months off and still havnt seen any improvements. I am scared

Was on Citalopram 20mg since Feb 2008 - switched to Paxil 20mg in August 2010

Tapered way too fast in April 2012 by skipping days. Taper completed in 6 weeks

Tried prozac 20mg for 3 days - felt spaced out, not better.

Tried 30mg Cymbalta for 2 days. SEVERE ADVERSE REACTION

Antidepressant free since 14 August 2012

Birth control on and off during this time - Last taken 18 June 2017 - Morning after pill 

Started mainly using 0.5mg Xanax beginning 2016 for severe panic attacks and anxiety due to trauma

Xanax on and off never more than 0.5mg at a time, never taking it 3 days in a row - used sparingly 

 

6 Years antidepressant free - Still in severe withdrawal with over 60 symptoms

Severe setback started May 2018 with no let up to date. Developed many new symptoms like tremors, inner vibrations, insomnia, visual distortions and dr/dp are 100x worse, i have severe sensitivity to movement, My dizziness and vertigo got worse and it now feels like im constantly rocking on a boat, my anxiety is sky high, suicidal idiation is back, i feel extremely brain damaged 

 

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We actually do have a few members who improved after a long time. Alto herself, of course, and Claudius, who just recently posted a success story. I think Stan is doing better now although still not fully where he'd like to be. Gia is doing much better now.

Started on Prozac and Xanax in 1992 for PTSD after an assault. One drug led to more, the usual story. Got sicker and sicker, but believed I needed the drugs for my "underlying disease". Long story...lost everything. Life savings, home, physical and mental health, relationships, friendships, ability to work, everything. Amitryptiline, Prozac, bupropion, buspirone, flurazepam, diazepam, alprazolam, Paxil, citalopram, lamotrigine, gabapentin...probably more I've forgotten. 

Started multidrug taper in Feb 2010.  Doing a very slow microtaper, down to low doses now and feeling SO much better, getting my old personality and my brain back! Able to work full time, have a full social life, and cope with stress better than ever. Not perfect, but much better. After 23 lost years. Big Pharma has a lot to answer for. And "medicine for profit" is just not a great idea.

 

Feb 15 2010:  300 mg Neurontin  200 Lamictal   10 Celexa      0.65 Xanax   and 5 mg Ambien 

Feb 10 2014:   62 Lamictal    1.1 Celexa         0.135 Xanax    1.8 Valium

Feb 10 2015:   50 Lamictal      0.875 Celexa    0.11 Xanax      1.5 Valium

Feb 15 2016:   47.5 Lamictal   0.75 Celexa      0.0875 Xanax    1.42 Valium    

2/12/20             12                       0.045               0.007                   1 

May 2021            7                       0.01                  0.0037                1

Feb 2022            6                      0!!!                     0.00167               0.98                2.5 mg Ambien

Oct 2022       4.5 mg Lamictal    (off Celexa, off Xanax)   0.95 Valium    Ambien, 1/4 to 1/2 of a 5 mg tablet 

 

I'm not a doctor. Any advice I give is just my civilian opinion.

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  • 2 years later...

Hi Glaucus,

 

I read a fairly recent post of yours and wondered how you were doing now.  I noticed in your signature you have been drug free since Dec. 2010. I am totally drug free since Jan. 2011 so consequently was curious to compare notes if you pop back in here. 

 

I have had many of the problems you list.  Though I'd been on other SSRIs in the past, and had some problems with them on occasion (including a short bout of Effexor withdrawal after short term use; thankfully I got back on the drug within a few days of stopping, and tapered off okay), my drug nightmare started in earnest with an adverse reaction to Celexa in 2006 on reinstatement, followed by a cold turkey. Many other drugs were added for that, among them benzos which I was on for years.  It took a long time to figure out how to get off them but eventually via help from a now defunct benzo forum managed to do it.  I also had reactions to other pills too, and on benzos had tremendous problems.

 

In terms of recovery, the Celexa reaction and at least one later drug caused me akathisia (among other issues), which was long running but which I have totally healed from, no relapses in years. I also have had twitching like you describe, that only happens now extremely rarely.  Had the anger too for years, now I'm way better. I also had burning under the skin feelings after the Celexa reaction which did clear up.  I've had many other things heal too, like dissocation/depersonalization/derealization, zaps, long running feelings of abject terror, pure "O" OCD thinking, I'm now able to eat certain things I couldn't remotely manage to back then like caffeine and sugar, I've healed from extreme sensitivity to noise, etc.  So definitely I feel a lot of recovery can go on even later on, as many of these problems went on a long time for me. Over a year ago I was able to fly to another country on a long flight and enjoy the flight too, something I'd never have dreamed would ever be possible for me again after I got akathisia, so recovery can be pretty remarkable too.

 

One of the biggest issues still though is the cognitive difficulties, like you I have had long and short term memory loss.  My long term memory access has been restored, for a number of years on benzos and beta-blockers I basically had almost no long term memory retrieval at all, except for a few old disturbing memories that haunted me.  To be able to get at some memories is a definite improvement.  However I still feel I could recall more.  Short term has improved from where it was, for a long while my short term memory was like a sieve and it only seemed to catch mostly the really upsetting things that had just happened.  But in spite of the definite improvement I have had,  I still feel I'm not where I was before with this as well.  I'm wondering if you have seen healing in that regard since you last posted?  And otherwise how you are doing overall too.  It sounds like you have had a terrible time and I truly hope you are now symptom free.

 

Wishing you well,

 

US

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

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