1Day: PSSD following escitalopram

[1Day]

Hello,

 

After a couple of months of reading some of the posts on this forum, I have decided to join, because basically it seems that I have PSSD.  As you will see from my signature strip, I have been on escitalopram at various doses for just over 7 years (finally came off in January of this year (2017)).  My history on this drug probably looks a bit confusing.  Basically I went on the drug late in 2009 for anxiety that I was suffering.  I only intended to be on it for a short time – maybe 6 months – whilst I made some important decisions about my future.  But my doctor at that time provided no guidance on coming off the drug.  I came off very quickly and crashed.  It basically took me about 3 attempts like this to finally realise I could not come off it quickly.  In the end it has been a long and slow process  with some bumps along the way, but finally I am off the drug – but it took 7 years.  I am male and now in my mid-thirties.

 

Anyway, whilst on the drug I suffered from sexual side effects, which from what I have read is very common.  But it was in late 2013 that I found out just how much the drug was affecting me.  I started a relationship with a girl who although I liked much, I could feel no deep emotion with.  Basically I could not fall in love with her.  At first I could not understand what was wrong with me, but one day shortly into our relationship I suspected the drug.  After a simple ‘Google search’ I had the answer.   This combined with the sexual side effects of the drug just made it impossible for me really and in early 2014 we split up.  It was at this point that I realised no matter what, I had to get off the drug.  It took 2 further attempts of slow tapering but finally I have managed it.

 

I am now almost 5 months off the drug, but seems I have PSSD. At the end of December 2016 I reduced from 10mg every other day to just 5mg every third day.  A few days after doing this I could feel something changing sexually – more normal feeling was coming back.  And about a week later I had a couple of days of what I would say was completely normal function returning.  However this only lasted a couple of days.  Shortly after this I took the last tablet.  I was now off the drug.  About 2 weeks later I once again had a couple of days of everything returning to normal sexually.  Again this only lasted temporarily.  Then a period of 3 weeks of the numbness and erection difficulties.  Then - 5 weeks after taking the last tablet - I again had a period of 2 days of normal functioning – this time I thought it was going to be for good, but unfortunately not.  And that was the last time I experienced what I consider everything being normal.  Since then I have returned to the numbness, lack of drive and erection difficulties that I had whilst on the drug.   I have had the odd day or two in recent weeks where the numbness reduces a bit and there is a little bit of sensitivity, but only a very tiny improvement for a day or so.  Then back to full numbness.   

 

Also I have developed a ache/pain in my testicles that radiates at times into the top of my legs and buttocks.  I can’t remember exactly when this started but I think it was around 6 weeks after being off the drug.   I also feel emotionally flat – I don’t think I could fall in love with somebody.  I think that issue is still there.  I can cry at times, but can’t feel any real happiness for anything.

 

I guess like so many people here I feel the most desperate I have ever done in my life and just looking to talk with others in a similar situation.  These past months have seemed like an eternity and every day is such a struggle.  I am hoping somebody can give me some hope, because right now I can’t feel much of it.  Also I do have a few questions which if anybody can give some sort of an answer to I would be so grateful.

 

1) Why did I have 3 separate periods of normal sexual function in the immediate period of coming off the drug (first 5 weeks) and then nothing further?

 

2) the ache/pain that I feel in the testicles – is this part of PSSD?

 

3) one of the things that really worries me is the fact that I noticed a change to my sexual function after taking just one tablet (God only knows why I did not stop taking them there and then) but as I only planned to be on the medication for a short time, it did not bother me too much.  Does this immediate reaction to the drug combined with my long-term use of it mean it more likely my recovery will be a very long time, or worse still that I never recover? 

 

Thanks very much for reading. 

[mammaP]

Hi 1day, welcome to SA.  You tapered off very fast, but that is not your fault, there is are no up to date tapering guides anywhere except places like this. Doctors are still thinking it is easy to get off them, and if you get withdrawal they think it is because you need them for life for a mental illness which is complete nonsense!  Sadly PSSD is a common symptom of withdrawal. I will try and answer your questions. 

 

1)  Often when someone stops a drug they feel fine for a few weeks, and think they back to normal, or near normal. Unfortunately, that doesn't last and withdrawal sets in which is all the side effects of the drug multiplied and with added extras!  

 

2)Ache/Pain. I really don't know, you need to get that checked out by a doctor. Many people do report pain but it is always better to get it checked out. It can be a symptom of withdrawal. 

 

3)People can have reactions to drugs very quickly. There are some out there who think that PSSD can be permanent, but there are many people who do recover from it. It's  a good sign that you had some periods of feeling after stopping the drug, it shows that everything you are able to function normally, and there is no reason to think that this will be permanent. 

 

We do find that those who can get on with their lives without focussing on PSSD recover faster than those who obsess about it. It is about waiting for your nervous system to heal, it takes time and lots of patience. 

 

Check out the PSSD forum to see how others cope, but be warned, some do not cope, and therefore suffer more than those who do cope and distract themselves. 

 

http://survivingantidepressants.org/index.php?/topic/52-post-ssri-sexual-dysfunction-pssd

[Spruce30]

Are you in the UK or USA 1 day? If you are report your PSSD to the MHRA (in UK) or FDA (in USA). The more reports of PSSD they get, the more likely they are to take it seriously.

[1Day]

Hi mammaP, thanks very much for your reply.

 

I try to be positive and not to think so much about the situation, but I find it very hard.  I know I have to work on this and try to find ways not to focus on it so much.

 

And thanks Spruce30 for the suggestion - I will follow this up.

[Altostrata]

Hello, 1Day.

 

Recovery from PSSD, as with other withdrawal symptoms, can be very gradual and fitful. Please be patient.

 

Have you had any other withdrawal symptoms while going off escilatopram? How are you feeling now? How do you sleep?

 

Many people do better with these 2 supplements

 

King of supplements: Omega-3 fatty acids (fish oil)

Magnesium, nature's calcium channel blocker

 

Fish oil helps the nervous system to heal; magnesium is calming and relaxes muscles.

[1Day]

Thank you for your reply Altostrata.

 

Apart from what I described in my introduction I have not really had any other withdrawal symptoms. Just some mild brain zaps each time I reduced the medication. So it is the PSSD and emotional effects that I am suffering from. And the ache/pain that I mentioned.

 

The situation has got me very down so I don't feel great right now. Sleep is generally ok, but I do find I wake a bit earlier than previously. But I get to sleep ok at night.

 

Do you think a lot of people at least see improvement by the 1 year mark with PSSD? I at least know my body can function correctly by what happened in the first 5 weeks when I came off the drug.

[1Day]

Just over 6 months since I took the last tablet. Still very much have PSSD. But have had some days in recent weeks where there have been some very small signs of slight improvement. But those small improvements don't last long. Everyday I try to believe I will recover from this. But it is very hard not to have days where it feels an almost hopeless situation.  

[1Day]

I am now 10 months off SSRI medication that I had been on for 7 years.  And my problem is PSSD and no romantic/love emotions.  I think I may have some other mild withdrawal symptoms like I get hot and sweat very easily and I was always waking up early but that seems to be getting better.  The PSSD and emotional issues, which I have not seen any real improvement in since coming off the drug, are causing me a lot of distress hence the reason for me posting again.

Like everybody I have read so much online (which is probably not a good thing).  There seems to be two distinct opinions.  The first is that the majority of people do recover from PSSD, but the second is that there is a good chance this is permanent unless a cure is found.

It seems all the moderators on this site tell people with PSSD that they will recover.  But then there are others like Dr. David Healey for example, who have a much more negative view.  I guess what I am saying is, I don’t know who or what to believe.  The one thing I have learnt is that reading posts online from PSSD sufferers just makes me feel worse.  It is a downwards cycle of despair.

I would like to ask any of the moderators on here what evidence they have that most people who have had PSSD have recovered?  I want to believe what you all say, but it is so hard to have that solid belief when you go to other places online – Dr David Healey’s site for example – where the view is almost the opposite.  Is it simply a case of the people talking/posting/despairing about this condition are those going through the process and the large numbers of recovered people we simply don’t here from them?

As much as I hate this situation, if somebody told me that in say a few years time I would be back to normal, my whole outlook would change.  What is so hard for me right now is the different information and opinions about the chances of recovery. And because I am not seeing any signs of real improvement it increases my worry and despair.

[ChessieCat]

The thing that you need to realise is that people who don't have problems in most instances won't be posting on the internet about it.  Here at SA is a good example.  The majority of active members are here because they need support because they are having issues.  People having problems with products and services voice their complaints louder than the ones who are satisfied.

 

Just a thought.

[Spruce30]

I think what one day is asking for is for the reason behind why a lot of people on surviving antidepressants feel people can recover from PSSD? What evidence is there to support that people recover from PSSD? 

 

I would like to know too

[bhasski]

Me too. 

Being 20 months off and not seem any benefit in that aspect ?

 

Why SA mods and people here  say it to get recovered with time and is there anything specific record they have for PSSD ?

 

I am long time associated with SA and resort to it as there is no place for help.

Everyone else have pill as the answer.

[Spruce30]

Have you reported your PSSD to Rxisk bhasski?

 

If not you can confidentially report it here. They are collecting reports of PSSD.

 

https://rxisk.org/experiencing-a-drug-side-effect/

 

[bhasski]

1 hour ago, Spruce30 said:

Have you reported your PSSD to Rxisk bhasski?

 

If not you can confidentially report it here. They are collecting reports of PSSD.

 

https://rxisk.org/experiencing-a-drug-side-effect/

 

Spruce I have filed it 3-4 months back.

[Spruce30]

Ok. I have asked so many people i forget who i have and havent asked.

[bhasski]

48 minutes ago, Spruce30 said:

Ok. I have asked so many people i forget who i have and havent asked.

 

Its okay to ask .. it will do good for long term and will help in awareness..

 

[1Day]

Thanks Spruce30.  That was my point and what I was hoping for some clarification on i.e. what evidence is there that the MAJORITY of people recover from PSSD?  I am not questioning and never have questioned whether there are people that have recovered - clearly there are.  But I think everybody with this condition would like something a bit more concrete in terms of evidence with regard to the likelihood.

 

The problem with phrases such as 'many people have recovered' is, what is 'many people'?  A hundred people is 'many', but if it is out of a hundred-thousand cases , then it is a very, very small percentage.  I am not for one minute suggesting that this is the case.  I am simply illustrating the point that words can be misleading without context.  And when it comes to probability (in this case the probability of recovery), it is only numbers/figures that can provide that context.  What would be fantastic, would be if somebody could say something along the lines of "over the past X number of years I have come across about X number of people with PSSD and X number of them have recovered".

 

So, if there is anybody reading this who can provide some sort of evidence that most people recover from PSSD, I think everybody on this site who has the condition, would be very, very grateful? 

 

 

 

 

 

 

[Lindsay625]

I don’t know a whole lot about t but I️ know a man on here who made a full recovery from everything even PSSD his name is aeroman! Very encouraging and hopeful story to read!

[1Day]

Thank you Lindsay625.  Yes, it is a very hopeful story to read.  And there are many others too.  They just kind of get a bit lost amongst all the despair and stories of great struggle. 

[1Day]

As I am a matter of days away from being 18 months off the SSRI, I thought I should post an up-date.

 

I still very much have PSSD and the emotional problems (lack of them).  In my original post, I mentioned that about 6 weeks after coming off the drug I developed an ache/pain in my testicles.  In recent months I have had some improvement with this, where I have had a number of days where I have hardly felt it.  And other times where the feeling has been less than previously.  But by no means has this symptom gone, just noticed some days/periods of improvement.

 

In terms of all the other PSSD symptoms, things have not really changed.  Although I do feel there has been occasional signs of better sensation.  But the actual dysfunction has not improved.  Have also had the very occasional hint of a bit of libido, but faint.   

 

I have not read of many cases of people getting better from PSSD in less than 18 months, so I guess it is still early days.

 

I am taking fish oil and magnesium, eating healthily etc.  Just praying that in another 18 months time, things are better than they are now.

[Altostrata]

Hello, 1Day, how are you doing?

[Shar244]

On 11/13/2017 at 8:35 PM, 1Day said:

I am now 10 months off SSRI medication that I had been on for 7 years.  And my problem is PSSD and no romantic/love emotions.  I think I may have some other mild withdrawal symptoms like I get hot and sweat very easily and I was always waking up early but that seems to be getting better.  The PSSD and emotional issues, which I have not seen any real improvement in since coming off the drug, are causing me a lot of distress hence the reason for me posting again.

 

Like everybody I have read so much online (which is probably not a good thing).  There seems to be two distinct opinions.  The first is that the majority of people do recover from PSSD, but the second is that there is a good chance this is permanent unless a cure is found.

 

It seems all the moderators on this site tell people with PSSD that they will recover.  But then there are others like Dr. David Healey for example, who have a much more negative view.  I guess what I am saying is, I don’t know who or what to believe.  The one thing I have learnt is that reading posts online from PSSD sufferers just makes me feel worse.  It is a downwards cycle of despair.

 

I would like to ask any of the moderators on here what evidence they have that most people who have had PSSD have recovered?  I want to believe what you all say, but it is so hard to have that solid belief when you go to other places online – Dr David Healey’s site for example – where the view is almost the opposite.  Is it simply a case of the people talking/posting/despairing about this condition are those going through the process and the large numbers of recovered people we simply don’t here from them?

 

As much as I hate this situation, if somebody told me that in say a few years time I would be back to normal, my whole outlook would change.  What is so hard for me right now is the different information and opinions about the chances of recovery. And because I am not seeing any signs of real improvement it increases my worry and despair.

 

I could’ve written this myself, feeling the exact same  

[1Day]

On 1/19/2019 at 9:14 PM, Altostrata said:

Hello, 1Day, how are you doing?

Hello Altostrata

 

Sorry I did not see you had asked how I was doing as I have not checked my own thread for a while.

 

I am 27 months off the SSRI now and sadly have not really seen any real change with the PSSD.  Having said that, over recent months I do have days now and again where the numbness seems a bit less, and also have had the odd day where I feel some faint libido for half an hour or so.  Maybe this is more significant than I think.  But when it disapears it just feels like I am going backwards.  Are these glimmers of improvement which don't last long normal for the slow recovery process of PSSD?

 

I still have a general lack of interest in things.  I don't think it is as bad as it is for others.  But certainly since being off the drug I feel less interested in things, and things that may have bothered me before, don't seem to as much now.

 

During the first year to 18 months off I went through a period where I would easily get very hot and often sweat quite a bit.  This seems to have got much better and pretty much gone.

 

I still have the emotional anesthesia as well, but this is mainly in terms of romantic type feelings.  I can feel sad etc.

 

I hope you are well and thank you for this site.

 

1Day

[Altostrata]

Hello, @1Day, please let us know how you're doing.

[1Day]

On 5/25/2023 at 9:41 PM, Altostrata said:

Hello, @1Day, please let us know how you're doing.

Hello Altostrata,  sorry have not logged in for a while.  Unfortunately I am still suffering with the PSSD.  I have periods where some aspects improve a bit.

[Altostrata]

What improves? How has your symptom pattern changed in the last 6 months?

 

Please add the year to the dates in your signature. Thank you.