Glaucus: Still suffering tremendously and in need of support

[Glaucus]

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 March 19, 2017 by scallywag
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[Petunia]

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.

[dalsaan]

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

[Glaucus]

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.

[Glaucus]

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.

[NoMeaning25]

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

[Rhiannon]

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.

[UnfoldingSky]

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