BooBoo19: SSRI discontinuaation syndrome from lexapro

[rachie]

Thank you for this share. I have been in a wave that scared me pretty bad because it felt like the early days. Anxiety has been my worst symptom. I keep trying to push past it when in a wave (which doesn't work so well) but with the help of my therapist I am allowing myself to throttle back more during the waves and be accepting of how hard it is and do my anxiety stretching on the stronger days. I've been so afraid that I will never get my freedom and independence back, or that my pulse will never quit pounding, or I will never be able to wake up without shaking and fearing another day but it is slowly, slowly, slowly  getting better in an up and down pattern. Today my prayer is God, give me the courage to hope to get through this. To create a vision for getting through. I started out that way but then as time went on I lost hope. It's been 13 months past zero for me. I pray for the courage to believe I will get through this. Blessings to all on this journey. Only you can truly understand. 

[BooBoo19]

Hello @rachie

I am glad it helped, if only a little.  I only post every 3 months as I cannot see any improvement on a weekly or monthly basis but over a longer period I can. I sincerely hope that we will all be writing a success story one day.  I feel that is so important for people who are suffering so badly with withdrawal as we have and continue to do.

[Jools44]

@BooBoo19I've just been reading your story and I wondered if you started the HRT at all? I am in a similar predicament - unsure whether to add it in or not. TIA x

[BooBoo19]

Hello @Jools44, no I did not start it. I was too worried to add anything else into the mix as I wanted to concentrate on coping with the withdrawal. 

[BooBoo19]

12 months later……

 

Today is 12 months since I took my last lexapro (escitalopram). I consider that I have turned a corner, I am not fully healed and still have waves but my windows are longer and I feel that there may be light at the end of this very long tunnel.  The last 3 months have been the hardest and the easiest.  Strange I know, let me explain…. At the 9 month mark my waves were still intolerable, high anxiety, poor sleep, not eating etc. There was no trigger and I was struggling to identify why and how the symptoms could be so debilitating or to understand the process.  I could not believe the waves could be so pronounced so far out, despite having read it on this site many times., I still hoped I would be different, I am sure we have all thought that at some time. I seriously started to think that this was me, my future was to live in one big anxiety bubble, never plan anything or have enjoyment in life, living in misery. The slightest bit of stress or pressure would disable me emotionally and in some part physically.  At 11 months, the biggest window came and made me feel almost my old self, again for longer than a couple of hours.  I even managed a baileys in hot chocolate. My sleeping has improved, it is not what it was but it is not insomnia anymore.  I still get waves, not as strong but still pretty unpleasant, low mood, tearful and anxiety.  My physical symptoms are, tight chest, occasional heart palpitations, tingling lips and mouth, not as much as it was but helps me understand that I am still in recovery.  I have been in a wave this last week, I have started to identify that when my sleeping changes, a wave is imminent,  for example, I will wake at 5 am, and toss and turn with my mind racing.  I have learned that a wave is coming but it has taken me nearly 12 months to recognise this.  Although I  have written my improvement,  now that I am in  a wave, I am doubting that I will ever be well again, but I am sure we all do that. My dreams over the last 14 days has been unpleasant, bizarre and disturbing.  They are not nightmares but vivid and horrible, bringing up people from over 30 years ago that I had never even thought about. I have lost 3 very good friends throughout this ordeal but in the words of Baylissa I have had to ‘lovingly let them go.’ But this still saddens me.  Some may say they were not good friends but to be honest it is pretty difficult and hard to comprehend that a prescribed drug could have such  massive consequences. I struggled to believe it, and still do to some extent, so others will.  I work hard on not trying to be bitter and angry about the situation but this continues to be work in progress.  One day I hope to write my success story but until then I will update 3 monthly and wish us all a speedy recovery.  Stay Strong!!!

[Jadenatalie]

@BooBoo19 amazing news to read. I also have lost a very best friend during this process, it has all been too much for both of us seemingly and we no longer talk which is a shame but I had to do what was best for me at the time. As you say any bit of stress is unbearable during this. I hope to be reading your success story one day!  x

[BooBoo19]

MY 3 MONTH UPDATE: 15 months since the last dose now and the last 3 months have been very difficult and in some sense feels as if I have gone backwards.  But there is hope, continue reading - At 12 months I went into the most debilitating, intense wave that lasted just short of a month with no windows.  I struggled, i really struggled. For the first time, I found a helpline in England and called it.  It was reassuring to be told (i know everybody says it on here) that I was ‘normal’ and that usually by the end of the 2 year period I should be a lot better.  They had heard stories the same as mine all day on the helpline and wished I could hear them to reassure me. They were confident that I would get better and recognise myself again.  I thought I cannot do this for another year, but what choice do I have? February was wiped out as a bad month, I even thought that I would have to give up my career it was so bad. A window did arrive again and then another wave that was triggered (I think) by putting myself under stress with my first weekend away to attend a memorial service.  I had missed so much up until this point and did not want to miss this. I really pushed myself but my WD did not like the stress and that is when the wave came.  Otherwise my waves have no triggers, or known identifiable patterns and trends. However, saying that stress does trigger my CNS and I can feel it almost immediately.

 

The longer it goes on, the harder I find it and although I am not depressed, I am getting very low about it now as it is taking its toll and it feels that I will never recover.

 

However, I am very nervous to say this, but the last 3-4 weeks have been better, the roaring anxiety seems to have dissipated, my sleep is better (not back to normal for me, but better).  I still have horrible physical symptoms daily but they have calmed down.  I actually went out last night and had a small beer (this is a milestone), I love wine but am far too nervous to have a glass just yet. I have not drank alcohol for 18 months now. I have had a window like this before but an awful wave in February came and knocked my confidence to think I am getting better, so I am wary to say it.

 

I have said it before, I am shocked at the symptoms and how long after I took the last tablet this continues.   I am jealous of all those people who take ‘normality’ for granted.  I cannot wait and will never question the finer things in life again.

 

I have lived on success stories, reading them over and over again, I very much intend to write mine own success story one day to help others in this horrendous situation.  I would read a success story and go back through their history as it gives me hope.  I hope mine gives somebody, somewhere a little hope.

I wish you all the strength to continue and feel stronger to enjoy life again as we used to.

[Ariel]

Hi @BooBoo19

Thank you for your update and your various posts chronicling your journey.

 

It is helpful to read about your experiences. Although our drug histories are different, I have in the past been on effexor, vortioxetine, and lexapro, so I feel like I can relate to some of the singular horrors associated with those drug profiles. 

 

1 hour ago, BooBoo19 said:

The longer it goes on, the harder I find it and although I am not depressed, I am getting very low about it now as it is taking its toll and it feels that I will never recover.

 

This sentiment resonates with me. Even though I've been in withdrawal for years and it's clearly getting better, sometimes I feel like it's getting harder to endure. The symptoms and waves have decreased in number and intensity, so one might think that logically withdrawal gets easier. Somehow there can also be a cumulative fatigue that sets in, where the mere fact that one has been incapacitated for so long takes up a lot of space. I don't know that this is what you mean; that's how your words land within my experience. I think of it as "recovery fatigue" and treat it the same way I do other symptoms. 

 

From my perspective it sounds like there is definite healing in process over the course of your posts. I know it's sometimes hard to discern from the inside. Your idea to post with longer intervals makes sense.

Maybe there are moments when progress appears clear and moments when the big picture gets murky from the little picture's seemingly incessant mudslinging! I regularly (and irregularly) oscillate between those focal points. I try to retain those memories of clarity and apply it as needed when the dust gets stirred up. And just keep plodding on... 

 

1 hour ago, BooBoo19 said:

I would read a success story and go back through their history as it gives me hope.  I hope mine gives somebody, somewhere a little hope.

 

Your update today gives me hope. 

Thank you. 

Peace and healing,

A.

 

 

[eileen1111]

how are you doing @BooBoo19 ?  

[BooBoo19]

Hello @eileen1111, Unfortunately I have been in a very big wave for 2.5 weeks.  I did have my first full week of a window just before this and I thought 'this is it' I am getting better and what a lovely feeling it was, but alas I entered a bigger wave.  I was posting every 3 months ,but this year has been difficult so I thought I will try and wait it out.  How are you doing?  

 

[BooBoo19]

Hello, i am hoping some kind person can help me.  I do not usually ask for help as I have been trying to manage the situation myself.  However, I am  21 months from my last dose of Lexapro.  It has been tough, as you will all know, but I have had some dirty windows and experienced the most beautiful window (normal life for people outside of withdrawal) for 1 week , 5 weeks ago.  I thought this is it until BAM I have had a month long wave(to date) that has been the most brutal ever, I am cognitively better however the roaring anxiety and fear has been constant for a month.  I have not done anything that would have triggered such a wave, no caffeine, no drinking, no supplement, no additional stress.  Has other people experienced such a brutal and long wave so far out?  I have been advised by a helpline in the UK that this is a common pattern and I am therefore seeking further reassurance?  Many thanks in anticipation

 

[ChessieCat]

Q:  Did you overdo things whilst in the window?  For example, did you go out more, do more things around the house, more exercise?

[rachie]

My experience has been that I'm always looking for the exact trigger but at the end of the day the waves are happening no matter what I do. Just seems to be part of the pattern. I had super intense waves and not much window at all at 21 months. I remember feeling that I had made no progress.  I'm at 26 months and anxiety is so crazy still, crying, avoiding and phobias but the other day I made a list of all of the symptoms from initial withdrawal and rated them as 100 % at the time and rated what percent of the time I have them now. This was helpful because I could see that many of them are markedly less and some almost gone. The emotional and anxiety symptoms are the most bothersome and they are the strongest Still.  Plus my reaction to them makes it worse. But I can see that in its very slow way it is getting better. I've heard others say these are the last to go. I'm hanging on to that. Every now and then I test the waters on supplements, overexertion, etc snd boy does it backfire. It reminds me how real it is. I think time is it. I hope it helps some for me to share that at 21 months I still felt hopeless and desperate but 5 months later I just feel like I get knocked down, get back up, get knocked right back down again but it's not 10 days or a month long any longer. But the downs can be as intense as ever. The pattern seems to be improving. Hang in there. Time takes time as they say. You are worth the wait. Hugs. 

[BooBoo19]

Thanks @Rachie and @ChessieCat for your replies.  I have done nothing different when in the window, I actually felt that good I could have enjoyed a glass of wine but I did not as I would not want to jeopardise my recover as I know how serious it is.  

 

Rachie, it is so lovely to hear from you as I know our patterns have been the same but you are further ahead.  It is inspiring to know that you are seeing some hope as to improvements.  The helpline in the UK who specialise in this withdrawal were not phased at all by my symptoms and advised it was very common but did confirm what you have said that the fear and anxiety are indeed the worse and the last to go.  I have managed to work throughout but fir the first time have had to take some time off work and feel that this far out I should be improving.  I will keep hanging on and having hope as Bayliss says, 'this too shall pass' but I wish it would hurry up.  Stay strong and wishing you a speedier recovery.

 

[Doctorsrcrap]

Hey. What helpline is this?