I suffered from a pretty bad biological anxiety that runs in my family and was very difficult to control without medication. Prior to the timeline of events below, I have taken other medications (Paxil, Effexor, Cymbalta) each causing sexual dysfunction at the lowest possible dose and genital numbness almost immediately upon taking them. I stopped them fairly quickly because of this, and sexuality and sensation returned but so did the anxiety, usually within the first 2 weeks of quitting.
I complained about the sexual functioning to my psychiatrist over and over again. No matter what we tried drug wise, each caused issues. He just pushed Cialis at me.
I took the medications because every time I stopped, everything reset and went back to normal.
The timeline
- July 2010 – Started 5mg Lexapro. Mild numbing, but not complete impotence like the other drugs. I was able to have “normal” sex, but definitely not normal frequency and sensation. I had a girlfriend, but it was a non-issue.
- November 2010 – Increased to 10mg Lexapro. Immediate increase in genital numbing, dilated pupils, non-existent sex drive. I didn’t feel the full brunt of the numbing until about a month into the higher dose. But it was doing a great job with my anxiety – totally removed it. I broke up with my girlfriend because sex became non-existent and it was the only thing holding it together.
- February 2011 – Added 200mg of Wellbutrin to counteract sexual issues of the Lexapro. I noticed a little improvement but definitely not normal. We gave this adequate time to kick in (6 months).
- August 2011 – Increased Wellbutrin to 400mg to see if a higher dose would help the sexual issues of the Lexapro. It did help at first, but then faded and things went back to nothing. Again we gave this adequate time to kick in (6 months).
- February 2012 – Tried to swap out the Lexapro due to the continued sexual dysfunction. My doctor tried me on Viibryd. During the taper of the Lexapro and initiation of the Viibryd, I did notice some return in sexual function. As the Viibryd built in my system though, it caused all the same issues as the Lexapro. Due to the cost difference, I went back to Lexapro.
- March 2012 – Back on 10mg of Lexapro and 400mg of Wellbutrin.
- January 2013 – I met the girl of my dreams. (I was not seeing anyone after the breakup mentioned above due to the sexual dysfunction). I immediately dropped the Wellbutrin (all of it) and cut the Lexapro to 5mg. I didn’t realize it at the time but my sexuality was not as strong as it was the first time I took 5mg of Lexapro. I began taking 10mg of Cialis at this time because I bit the bullet and finally did what my doctor told me (to treat the dysfunction with Cialis). It worked really well at first.
- March 2013 – I was given 1mg of a dopamine agonist called Ropinirole to try and make the sexual stuff better. It didn’t really do much but just made me really confused and out of it.
- April 2013 – Had a severe panic attack and I couldn’t calm it down immediately. Went up to 7.5mg of Lexapro and that got me to calm down. We also dropped the Ropinirole and tried another dopamine agonist called Mirapex.
- June 2013 – 7.5mg Lexapro and 0.5mg of Mirapex. Mirapex made me anxious so we upped the Lexapro back to 10mg. It never did anything for the Lexapro induced impotence, but it did help more than any other “offset” we tried. It somewhat increased my libido and helped me to orgasm better. This with the Cialis (20mg) was probably the most tolerable sexually I had been during this entire experience. To be clear, I didn’t stay on 0.5mg of Mirapex the entire time. It definitely made me feel anxious so we cut it back and went with the bare minimum approach. At one point I was down to about 0.125mg of Mirapex with 10mg of Lexapro, but I ended on 0.25mg of Mirapex.
- April 2015 – 10mg Lexapro, 0.25mg of Mirapex, 20mg of Cialis as needed. Something changed with this combo. I was not able to stay hard and my sex life was again in the toilet. I took the Cialis and nothing happened. I attributed it to “Cialis tolerance”, as I was taking them probably 2 or 3 times per week for about a year and a half. I was still able to get turned on though and masturbate to porn. I went back to my doctor because I couldn’t perform with my girlfriend anymore, just with masturbation (it took a lot of stimulation).
- May 2015 – Enter the Brintellix. Bare minimum approach was taken for the treatment of my anxiety. No Mirapex with this drug, just 5mg of Brintellix all by itself, with occasional Cialis which was no longer working. I knew something was wrong here the first week I took this drug. Unlike the window I mentioned above when I stopped Lexapro to add Viibryd, Brintellix totally destroyed my sexuality. Any remaining functioning I had was gone. It rendered me totally impotent. I stayed at 5mg for a month to give my body time to adjust, but nothing happened.
- June 2015 – 2.5mg Brintellix. Ended up quitting it.
- July 2015 – 5mg of Buspar. No sexuality, no anxiety.
- November 2015 – Dropped Buspar and tried Lamictal – awful, awful experience – it lasted 2 weeks. I think I made it up to 40mg, and my ears were popping. This was the first time I had flu-like symptoms from a drug.
- December 2015 – back on 5mg of Lexapro. In retrospect, my sexuality on 5mg of Lexapro was not even close to what it was the first time back in July 2010. I was still taking Cialis (not doing much of anything but I had to try).
- August 2016 – Stopped all prescription drugs. 5mg of Lexapro was done.
- September 2016 – In fear of the anxiety coming back, I was taking a low dose of something called inositol powder. I thought it was really helping the anxiety because I did not feel any, but also thought it was causing me the sexual dysfunction still.
- October 2016 – I was free of everything.
Present day
I have been medication free for almost 10 months. I have no anxiety and no sexuality (mostly impotent 98% of the time). I can get an erection sometimes with manual stimulation but it doesn’t last. I continue to have numb genitals, low desire for sex and pleasureless orgasm. I have since tried Viagra, and it does make me hard most of the time. The problem is I cannot feel anything and I cannot orgasm through vaginal intercourse. I have to really manual stimulate it to orgasm. Good news – my semen looks OK. Amount and coloring look pretty normal to me. I am scared to take the Viagra though, because I really want to give my body time to heal. I have had a couple of good signs, but nothing to brag about.
I am now married to my wonderful understanding wife. We have had natural intercourse a handful of times meaning I get hard enough to do it. I cannot finish vaginally these times though.
I definitely have sensory neuropathy as well. Perfumes and strong deodorants drive me nuts. It is really hard to explain, but they just smell so potent to me now and give me a headache. I have numbness in my fingertips as well and some in my feet, which I attribute to the Lexapro.
It kind of feels like my skin is dry, and I put on moisturizer constantly. I also have chronic mild headaches now which I never had before, random unexplained fits of diarrhea (eat super healthy), nausea and emotional blunting as well.
Still feel medicated
If I had to sum up how this feels, I still “feel” medicated. It is like I am stuck in some sort of weird homeostasis. My dopamine is clearly not firing like it should. It is like my body is stuck in the SSRI state. My brain feels “fried” and desensitized. I have no anxiety, or really any other emotion for that matter other than despair of this not going away. I guess I am grateful that my anxiety is gone because that was horrible, but it was at the expense of my sexuality and who knows what else. Oh, I also gained something like 50lbs over the course of this timeline as well. I exercise a lot.
I feel victimized. I feel lied to. I feel like a lab rat. No one ever told me this could happen, or I would have stopped these drugs back in 2010 when I had the chance. My psychiatrist who prescribed me these medications over this timeframe closed down shop and apparently retired or limited the scope of his practice because he got sick. I went to a new one and he said there is some literature out there of the dangers of SSRIs but he never encountered it, but he guesses it’s possible. Well he is encountering it now.
Hopefully someday it will get better, but from what I see online the prognosis does not look good.
Anne-Marie says
I went from 5 years on Paroxetine and then straight onto Citalopram and still suffered side effects of Paroxetine one year on. I then went onto Mirtazapine two months after coming off Citalopram and still suffered the Citalopram side effects for a year after that. I think the brain takes at least a year to adjust, these drugs damage the brain in some way and it takes time for the brain to heal itself afterwards. This is my personnel experiences and I was always told “Oh no cant be the medication the withdrawal only lasts a few weeks”. Not true at all. I am now medication free since the end of 2016 but still suffering after six months for the first time of being medication free in 17 years. I suffer ever day Paranoia and Anxiety the worst but I will beat it and come out better for it I know.
annie says
I feel victimized. I feel lied to. I feel like a lab rat. No one ever told me this could happen, or I would have stopped these drugs back in 2010 when I had the chance.
MIA RADIO: Expanding the Audience for “Critical Psychiatry” Perspectives
We are very fortunate to have James Moore leading this initiative. James, who is from the UK, has been producing the popular “Let’s Talk Withdrawal” podcasts for some time. Listeners know him as a great interviewer, who is always well-informed about the work of the person he is interviewing and the larger issues involved.
James will be hosting a weekly MIA podcast that, in essence, will follow in the footsteps of his Withdrawal podcasts.
https://www.madinamerica.com/2017/06/mia-radio-expanding-audience-critical-psychiatry-perspectives/
The expansion of the audience is always a good thing
Podcast Flyer!
http://www.jfmoore.co.uk/podcast.html
Pit says
That story is so similar to mine…
But as a victim of ssri i’m more interested in solution than another pssd story…
I saved two people from taking that poison and they are doing well now…no anxiety, no depression…haha everything has gone since i told to them my story, but NO ONE wants to help me….
In fact there is nothing that can be done….
Jonathan says
I am 2 years, 4 months post-SSRIs – 16 years worth of SSRIs: Paxil for 4 years beginning at age 18; Celexa for 10.5 years; Zoloft for 10 months (had to stop because of severe weight loss/diarrhea; withdrawal triggered suicidality); Buspar (a different type of serotonergic agent) for 5 weeks (had to stop because of blood sugar problems and dissociation); Luvox for 4-5 months.
I am not the same. Don’t ever expect “full recovery” for myself. Ongoing food sensitivities; cyclothymia; emotional numbing; petit mal seizures; feelings of unreality and paranoia.
SSRIs are prescription poison. They *correct* nothing.
Hannah says
Do. Not. Take. Psychiatric. Drugs.
Just don’t.
Ever.
If you do, I promise you a lifetime in Hell, studded with desperate regrets.
Heather says
Not sure if this fits with the above, apart from Hannah’s comment. But my husband and I had a sudden flash of enlightenment this week and we wanted to air it. We were just writing a piece on the Olly’s Friendship Foundation facebook page in memory of Jon Medland who died by suicide following taking RoAccutane- isotretinoin for his slight acne, for just one month! We wrote that he died in 2004 ‘and had never had any history of mental illness’ so it seemed open & shut that the drug killed him by causing a temporary psychosis. Then we suddenly thought, ‘how is it that ROCHE excuse themselves from any such deaths when they can point to any history of mental illness in the patient’s family?’ What research is there to prove that when someone is given RoAccutane, they are more at risk of developing mental illness if there is a family history? Isn’t this just one massive cop out for ROCHE, and how on earth can they have got scientific proof of this? Isn’t this just a very handy little myth, which shifts any blame very neatly off their horrendously dangerous drug and onto the family who may be afraid of mental illness stigma? When you really look at this coldly, you see how fallacious it is, and how manipulative. And don’t let’s forget how sexual dysfunctioning, often permanent, accompanies this drug, another stigma that young people can’t bear to talk about, so it carries on under the radar. Lab rats, you bet…..
annie says
In 1993 Richard Bentall went a bit mad.
David Healy uploads ..
https://davidhealy.org/wp-content/uploads/2012/08/Richard-B-goes-Mad.pdf
In his controversial book Let Them Eat Prozac Healy wrote about what the volunteers experienced.
“It was not like anything that had happened to them before… Highly personal memories of previous unhappy times – broken relationships or loneliness – seemed to be flooding back. And if they previously held themselves responsible for these unhappy times, they seemed to hold themselves responsible for feeling the way they did now as well.”
Bentall notes studies that show the majority of people who are diagnosed as depressed are also anxious and vice-versa: “It becomes somewhat arbitrary whether you say someone has depression or anxiety.”
Unravelling madness
Lost soul says
I took prozac for a few weeks in 2013 aged 17. I become totally impotent, totally asexual, and totally emotionally numb. I will turn 22 soon and there’s been no remission, no improvement. In the interim I have been put on combinations of up to six psych meds at once including antipsychotics and ssris simultaneously. My penis has already shrank over an inch permanently through having no erections for over four years. I have been med free for a year now with no improvements.
I cannot begin to describe how profound the effects of pssd can be on sexuality. Impotence at 21 is a nightmare in its own right, but what’s even scarier is the total lack of any mental arousal or sexual thoughts. I remember last year, a girl I really liked was bent over in front of me in her pyjamas and a thong. That should get me really excited and instantly rock hard. If I’d never touched an ssri, it would. Instead – nothing. No response at all. She might as well have been a 40 year old male bricklayer. A few months later – we’re in bed together. She closes her eyes and holds her face up for a kiss. I kiss her. She fondles my genitals (thankfully I had an OK erections as I had drank a ton which temporarily helps with pssd). I want to want her, but again, I feel nothing. I have to move her hand and de-escalate the encounter because I knew as soon as I moved I would instantly become flaccid and I couldn’t bear the thought of her knowing I’m impotent. We stay friends for a bit and then stop talking. If it wasn’t for my pssd we’d be together. I never had set before pssd so most likely I will remain single and a virgin my entire life.
I have less sexual function than a 90 year old. That’s not an exaggeration.
There is nothing that helps much. The only sexual experience I can have is masturbation with a semi that ends with premature ejaculation and a nearly nonexistent orgasm.
And why was I prescribed prozac in the first place? I don’t know. My GP didn’t think I was depressed. Nonetheless, he prescribed me prozac and told me they might help. I’ve since found out that’s completely against NICE guidelines. And no, he didn’t warn me this could happen.
Yes, this actually happens. Yes, it could happen to you. My life has been profoundly and irreversibly ruined. You will not find any help for this from the medical system. Most doctors are unaware of pssd and those who know of it won’t try anything that might help for liability reasons.
So that’s my life now. A useless penis. A complete inability to feel anything sexual. Oh – and ssris lower oxytocin levels too. So I find it very hard to feel love or empathy, even for my family.
You have to be skeptical about ssris and every other medication proposed to you by doctors. In 40 or 50 years ssris will be viewed in the same way we now view lobotomies, mark my words.
Spruce says
Seriously. Something really, really needs to be done about PSSD. It is a really nasty condition. I cant deal with having it much longer. A few more years without improvement and i am really tempted to end it. I am not looking for attention or sympathy, but PSSD is very mentally difficult to deal with. I cant live the rest of my life having no sexual feelings. The suffering of those who have developed it needs to be acknowledged and taken seriously. Everyday is torture. I cant live like this forever.
Pit says
Spruce you should join to pssd forum it s very posotive forum and you can find a lot of support there
Pit says
IDK how it s possible that peole can sentence someone for life time torture
Spruce says
I thought the pssd forum was full of negativity, and people saying PSSD is usually permanent etc. How would this make me feel better or positive? Am i wrong?
Pit says
If they think that it is permanent they wouldn’t be there.
Of course you can see also negative posts but as you know sometimes it s impossible to be only positive.
They are the only people who understend you.
It is important to have as many people as possible to talk about theories, symptoms etc
Also there are some advices how to survive it.
Look on SA they don t even want to have people with PSSD anymore because it harms their website – Alto said it.
I see that you suffer tremendously as me.
So join us.
Sorry for my English.
Spruce says
I will check out the pssd forum. Why did Alto say it harms the SA website having people with PSSD there?
Pit says
Because I think that people with pssd are inconvenient for them. Here we are scarecow….so we can help prevent pssd.
But i think you should join us
You can tell your story, whot u ve tried, what is your theory
Spruce says
But why are people with PSSD seen as an inconvenience? Why is PSSD any less important than any other protracted withdrawal symptom that hasn’t gone away?
Pit says
Cause that conditions is so awful that no one knows words that can bring you peace.
Media and medical comunity don t want talk about it….
It is better forget about people who have to live with it
Delta says
Hi Spruce and Pit.
Both of you are being naive…
The PSSD problem is something that can DESTROY more than 90% of the antidepressant market.
There’s a lot of money behind the scenes to keep this contained.
Years ago used to exist a site called Paxilprogress. It was focused on the Paxil disaster.It was growing.One day it simply disapeared.
On Wikipedia the PSSD page is censored. You can find articles about it on this blog.
I assume SA is SurvivingAntidepressants. If you say that they are worried about the site traffic and they censor PSSD you can assume that they have been bought.
Containment is the key word. Big Pharma knows it and the “doctors” also know it. There’s a lot of money still to be made on the herd’s ignorance. 60 years ago “doctors” promoted Camel cigarettes, now you have dead people photos in cigarette packs. Bad luck to all of those men with ruined dicks (me included)…
Antidepressants are a man biggest mistake in life and also the gratest lesson about human society.
If you read David Healy, Peter Goetzhe, Peter Breggin, Marcia Angel, Ann Blake Tracy, you will understand everything.
Psychiatry is worse than the mob.
No objective disease diagnostic. Just convincing people to buy drugs.
Pit says
Actually you right every attempt spreading awernes fails…
Sorry for my English
JanCarol says
It’s not that SA has been “bought” or that we are worried about site traffic, or even that PSSD is inconvenient. PSSD is simply “off topic” in SA forum.
SA is a site for safe, harm-reduction tapering. Tapering cannot help PSSD. It may prevent symptoms – but if someone is already in PSSD, even the most cautious tapering program may not help.
Many people misperceive that SA is for psych support; it is not. We are peer volunteers, not psychotherapists. SA is for tapering support, and that is something which is difficult to get anywhere else. We try to do some handholding of people in distress, but there aren’t enough volunteers to go around.
PSSD is, quite simply, off topic. Additionally, we are a family site, and PSSD is often too graphic. We have a number of sexual assault survivors in there who cannot face the graphic descriptions of PSSD. Even this Rxisk article would be too triggering for many
I hope this clears up some misperceptions as to why SA often refers PSSD sufferers to other forums where they can freely discuss problems and get support from understanding peers.
JanCarol says
argh no edit function on this site!
Protracted withdrawal symptoms can be helped by reinstatement and adjustments to tapering, long holds.
PSSD – nobody really knows what helps, though we know a lot about what harms.
If someone who had PSSD on the drug, and fast-tapered came to me complaining that PSSD was their major symptom – I’d be hard pressed to recommend a reinstatement or tapering program. How could someone recommend “hair of the dog that bit you” (reinstatement) when the dog bit you THERE?
Heather says
Spruce – on BBC TV News tonight, 10pm, there was a piece on new scanning of the brain by Prof Derek Jones at Cardiff University, in more depth than ever before. Might this not give us insights into what medications are doing to various areas of the brain and what is causing PSSD? Apparently this new science is amazingly revealing. Cardiff Uni has one of the only 3 of these scanners in the world. Would David Healy have any comment to make about this? If we could see what neurological damage has caused PSSD, surely there MUST sooner rather than later, be a way to put it right… Big Pharma should be worried now, as probably we will be able to plot, in colour, EXACTLY what their drugs are doing when they hit the brain. So they can’t hide behind ignorance any more. It may well be that the solution and healing of PSSD is just around the corner. But your book (when you write it) will be a vital contribution to all this. Hope you’ve started it! :). Will buy it when you do!
Dr. David Healy says
As regards brain scans, I suggest no one should hold their breath. My hunch is PSSD is peripheral. The brain will be normal other than the fact that no brain on drugs is the same as it was before the drugs. We have been able to “see” this on EEG and quantitative EEG for 50+ years but it makes no difference.
D
mary says
I, too, found the piece about brain scanning fascinating and, like you, my thoughts immediately went to the effect of psychiatric medication on the brain and whether we were watching something which, at last, would help in the understanding of adverse reactions to such medications. Having read David’s reply, it seems we were thinking far too simplistically doesn’t it – such is our hunger for an answer to these problems I suppose.
David – you say that ‘no brain ON drugs is the same as it was before the drugs’; what about the brain once the drugs have been removed? Is the brain able to heal itself, or is the damage permanent? We know of the power of the brain to repair following a stroke, for example, with intense therapy. I accept that duration of treatment and amount of drugs consumed most probably cause a wide variation anyway. Would any changes post drug use show up in a brain scan or would the difference be merely in a person’s behaviour / reaction to life events? Does ‘depression’ show on an EEG scan or merely manifest itself in low mood/ hopelessness/ helplessness etc.?
mary says
Looks as if a Q&A session would be a good idea David – would help us to know exactly when we are given the truth by other professionals and when we are merely given any story to pacify us. I asked the questions above because Shane had an EEG a few years ago which showed white patches on the brain. The psychiatrist working with him at that point referred him to a neurologist ‘to see whether the EEG find had any bearing on his depression’. In due course, he was seen by a neurologist from the Walton centre who, after questioning Shane about any ‘fainting issues’ etc., simply said that “once you turn 30 you’re allowed to have a few white patches on your brain”. That was the end of that – no further info was given but was told to report any fainting or loss of consciousness, should they occur, to his GP and request a re-referral!
Heather says
Brilliantly put, Mary. You’ve encapsulated exactly what I think so many of us want to know. I wonder if DH has actually seen the BBC programme himself – I think he would find it fascinating. The brain was depicted as a complex arrangement of white petals, which seemed to vibrate or flutter, like a sea anemone under water, and different areas lit up in subtle colour formations as their functions were used. It was like nothing else I’ve ever seen. I should have thought the knowledge available from this would be most interesting and might lead to much greater understanding of how the brain works by sending signals to the body, like peripheral neuropathy for instance? Or am I talking nonsense?
Spruce says
What do you suggest the way forward regarding PSSD is Dr Healy? Do you think in time it could be found what the mechanism of action behind PSSD is, and that there could be some way of treating/ reversing it? This whole bleak outlook, that once you have PSSD you are screwed forever, makes me feel like giving up.
Oakey says
I’ve been dealing with the hell of withdrawal syndrome for 2 years. Two or three adverse reactions and full blown pssd for 9 months. I initially got pssd and penile anaesthesia from reinstating Prozac almost 2 years ago after one year of sertraline. Miraculously, function and feeling returned to close to normal within 3-4 weeks. Then I endured some anhedonia, which was bad, but looking back on it now, I’d say it was actually a good time. Then followed severe OCD behaviour and suicidal ideation/depersonalisation/head pressure. My libido was strong for almost a year before it began to decline again summer 2016. After a month on mirtazapine to help treat the severe anxiety and OCD, any sexual function just about died along with the return of genital numbness and this time some widespread body numbness to add to the mix. While the drug wreaked havoc on my CNS and peripheral nerves, a psychiatrist, doctor and a&e nurse all said it was just my anxiety and that I must stay on the pills. Now 8 months med free and symptoms remain. The pssd and anhedonia are severe but I find the abdominal numbness quite strange. A woman on the asexuality blog mentioned something akin to cauda equine syndrome. The whole area feels dead and it is probably the most disturbing symptom. I also experienced what Jonathan above described in another post regarding ‘the magnet’ effect. This was actually the reason I stopped taking sertraline. All of a sudden certain situations would create a panic effect where I felt as if my brain was telling me to jump in front of cars, jump into the Seine river, the metro, on to the ground floor of shopping centre, Lac Creteil just outside Paris while walking the dog. Difficult to put in to words but very disturbing when you experience it for the first time. It still affects me and I think I now have acrophobia. I have an appointment with neurologist soon, given what David says above I’m not feeling hopeful for any breakthrough. Feeling pessimistic in general, but I’m glad to see there’s a growing academic interest in pssd.
JCMJCM says
I still do not understand why anyone would think that using more drugs, different doses of the same drugs, or different combinations of more drugs, or more different drugs with new names, is a solution. I’d rather be anxious. Of course, no one ever suggested toking a little pot for anxiety. That would be USING D-D-D-D-DRUGS!!!
We have as big a problem with people following their doctors like so many SHEEP, never questioning, never analyzing, never doing their own fucking research into all these chemical miracles they think these spottily-educated M.D.s can dispense.
I work filing insurance claims for a LCSW, and the drug cocktails–often prescribed by the same money-grubbing pill-pushing shrink–are off the charts in terms of pharmacological carelessness and studied ignorance. Polypharmacy is more often than not the real problem, not the anxiety.
Heather says
After reading Dr David Healy’s comment following on from mine re new exciting forms of brain scans shown on BBC news, I looked up his word ‘peripheral’. I assume he means by this that PSSD is probably caused by some kind of neuropathy. Would that be correct?
From what Spruce and others have so reasonably oftentimes emphasised, they need hope to understand what mechanism is causing this horrendous PSSD for them and what can be/is being done about it. I have great respect for Dr Healy and his efforts to raise awareness of drug effects, but at the same time, like Mary in her comment, I feel we need more explanation about how the PSSD is going to be overcome, else how on earth can all the Spruces who read this blog, keep their hope alive and carry on?
My own particular interest is in how the brain changes after use of RoAccutane-isotretinoin (for acne). ROCHE religiously maintain that there is no proven causal link between their drug and suicide, but scans some years ago by Dr Doug Bremner (USA) show the frontal lobes losing 21% of their normal function after using the drug, and that area of the brain is the part used for reasoning I believe. The MHRA refuse to take on board these proven findings.
Surely, as Mary points out, if we can see how all these drugs change brain structure, then we can see why bizarre thoughts and behaviours ensue? Just like Oakey describes feeling when walking in Paris and suddenly feeling suicidal. So, when Dr Healy says we shouldn’t hold our breath when hearing of these new scans, I confess to feeling deep frustration. If we really can’t find a way forward, if no serious work is being done and reported on PSSD, are we just talking this whole thing round and round and never seeing any hope on the horizon to move forward to? Like Mary says, the brain can heal after stroke. So can’t we find a way to heal it after drugs which have caused PSSD? Or do we all just throw in the towel and shake our heads. Echoing Spruce’s comment, please can Dr Healy tell us how he sees the way forward, especially as Oakey points out that there is now new academic interest in this. We cannot accept that there really is no hope for Spruce and all the thousands like him. And we absolutely won’t.
Delta says
This message is for the person that censored my reply
I’m absolutely sure that you dont live with PSSD.
The consideration and apreciation i had for rxisk.org just disapeared…
I was wrong: Censorship and containment are the key words…
Heather says
For Delta, I don’t know if this helps but there IS a really interesting reply from you further same date but slotted in further back up the string, which you wrote a few minutes before this last one about being censored. Just wondered if you’d seen that one further back and if not, had thought it had not been printed. For the record, I thought it was excellent. If there was more in it that’s been removed, well, only you would know, but hopefully it’s all present and correct.
It’s rare that anything gets censored off this Blog I’d imagine. It’s only happened to me once, and I write at such hideous length and sometimes far too emotionally, so that’s a miracle to me :). Don’t lose faith in RxISK, it’s so useful and enlightens so many when nothing else reliable and trustable does. Please excuse my intervention, but just wanted to say that.
Spruce says
Living with PSSD is a silent form of torture. You are stuck in a body that cant feel any sexual feelings or sexual pleasure. The torture goes on for years (almost a decade for me).
You reach out to doctors hoping they will listen and acknowledge what has happened to you, but they tell you it cant be the SSRI’s causing the ongoing sexual problems, and suggest the ongoing effects of their drugs is all part of your mental illness, and that you must be mistaken. I have tried for almost a decade to get various GP’s to believe in PSSD; to no avail. Why is it so hard for them to believe it exists?
The burden of dealing with it all alone, eventually forces you to reach out to family and friends, for them at worse to take the piss, or otherwise just suggest it cant be the drugs because you have been off them so long, or just to shrug their shoulders and say they have never heard of anything like it.
There is no one to support you, console you, sympathise with you, or acknowledge your suffering. You are alone. It is a bit like that film Aliens. In space no one can hear you scream. With PSSD no one can hear you scream. You are stuck in your own horror film, like being trapped in a world which 99.99% of the world knows nothing about, and there is no map available to find your way out, to get back to the life you once had.
Like a silent scream. In the world of PSSD, no one can hear you scream!
Heather says
Spruce, I believe most doctors know perfectly well that PSSD exists but can’t be heard by patients to admit it, because they don’t know what to do about it. Isn’t it a bit like motorists always being told by their insurers never to say sorry when an accident is their fault, as by so doing they admit liability.
As to not being believed by family and friends, there is one other, even more sickening scenario; ‘Oh, NO DOCTOR would give you this stuff if it could really do that to you, surely?’ It’s enough to make one explode with frustration.
If PSSD is peripheral neuropathy, then it must be possible to heal those peripheral nerve connexions, and if, as I feel certain, medics are well aware of the rising numbers of cases of reported PSSD, then behind the scenes in top Uni research departments, work is bound to be going on hurriedly trying to find a cure. It’s otherwise going to be like letting all the bees die and pollination stopping leading to death of the planet. With such high numbers of people taking SSRIs and anti-psychotics, so many will end up with PSSD that the population will drastically reduce. Also, more and more fuss and protest will hit the headlines. I bet you someone is researching it at Oxford or Cambridge. Might be interesting to ring around, saying you are an A level student writing a project on it and is there a research scientist there who can give you a few up to the minute insights on it for your essay. They are usually keen to help youngsters. I know Olly did this when 17 on another subject and got amazing information, and I did it once, to find out about epigenetics. If you have any luck, please share your findings with us on here, and keep hope alive. Someone is bound to let something slip.
Heather says
Well JCMJCM I couldn’t agree with you more. In UK this week we had BBC News telling us that mental health services would soon be so overrun by demand that chaos might result, or words to that effect.
There IS a simple solution to this. People are not born ‘mentally ill’ nor to they choose to be so. Life’s events and traumas drive them mentally into a hell they struggle to get out of, and they are thus vulnerable. That is the time, when they are at their most afraid and maybe dependant, that medications are prescribed because it seems a buffering comfort against confusion and fear. When you are totally desperate, you reach out to those who purport to be able to make you safe again because they are medically qualified and assertive. But for the most part, after a very brief week or two if you are really in need of such a drug buffer, they tip you into a worse hell.
Could we not set up places where those broken down by stress, could go regularly, meet others like them, have compassionate advisors on hand to listen, talk through the stressors and offer an action plan to work through, supporting till recovery. We don’t need psychiatrists dishing out drugs and pontificating. We need a chance for everyone to everyone to unburden themselves as soon as the stress really takes a hold. So waiting several months for counselling isn’t much good. People just need to talk. And be helped to find solutions, without resorting to medication, alcohol, etc. I bet the biggest worry people have right now is about finances. They need compassionate banks, common sense manageable solutions, long term arrangements as safety nets so that they can sleep at night. Not short term work contracts and no proper security, so they are constantly living like cats on hot bricks. No wonder we have mammoth levels of anxiety. And then, on top, they get thrown the lifebelt of medications, which make them less able to cope.
We went to talk to an MP today about a new approach to mental health care for anxiety sufferers, on the lines of the above. Centres for talking and therapeutic learning, painting, writing, horticulture, compassionate company and helpful advice. We’d love to set one up, and then look at results, in comparison with the frustrating mess UK mental health care is in right now. It would need a bit of money to start up but we could keep running costs low, using volunteers where appropriate, so long as their ethos was kind and non judgmental. They would be listeners, understanders, shoulders to lean on whilst people had a rest from stress, and in so doing, found new ways of coping with life.
This isn’t any help for the PSSD problem I know, but I’m saying if the drugs weren’t being dished out (at massive expense, don’t let’s forget) the PSSD would not be there at all. I accept that if one is severely psychotic, one needs specialist help, but there would be more of this help available if the others, not psychotic, had timely supportive common sense help in good company, surely? And some meds, we know, cause psychosis anyway. We do not need a ‘magic’ psychiatrist with potions. We need to be heard, empathised with, and loved.
mary says
Just a quick note – Heather, you mention the link between mental health and financial problems in your comment above plus the lack of a ‘listening bank’. I would just like to say that Martin Lewis (Money Saving Expert) has set up a charity which is working to help close the gap between mental health financial problems and the banks’ responses to them. Thinks are moving in the right direction but there is still a lot left to do.
I would also like to add that a way forward, in the absence of centres such as described by you, surely would be a better relationship between CMH and family/ carers. If we, who are supporting, were able to discuss regularly with understanding professionals ( and they are around even if few and far between!) and thereby glean a better understanding of what is going on and how best TO SUPPORT, then surely the whole network would work as one? Finding a professional willing to listen and advise should be as much of a right as is the right of the patient to help in the first place. We know all about shortages in the NHS system but by treating us (family/carers) as part of the picture, rather than as enemies as so often happens, the workload could be shared. By this co-ordinated working, the patient would also benefit from the knowledge that all who care are sharing in his/her journey to a better life. Should this ‘journey’ lead to a person with a far better understanding of ‘self’, then they, in turn, could become mentors for those in society who are suffering without the support of family/friends or carers. All of the above would lead to less stress all round – and that includes the overworked professionals. ‘Them’ and ‘us’ must disappear and re-appear as one body in total unity – that seems to me the only possible, financially viable way forward.
Spruce says
You are thinking in the right direction i think Heather. Lack of understanding and compassion from a cold and judgemental family after i went through some unpleasant experiences in my teen years was what triggered off my OCD when i was in my early 20’s.
From what i have learnt about mental illness over the years, and from my own experience, i genuinally believe that an environment of love, understanding, acceptance (rather than stigma), and compassion towards those with mental illness, can go a long way in helping a person recover.
In fact i read about a society/ country (some hindu or buddhist country i think) where people who develop schitzophrenia and other mental illnesses, are completely accepted within the society, and are given work which they feel able to do, and very little medication is used if any, and they are treated as being as important as any other member of society. The people with mental illness in this society often recovered from their illness, and they were much better functioning, and happier, than those treated by powerful mind altering drugs like in the western world. There was a compare and contrast study done i think about this, between this society, and how our type of society deals with mental illness. I remember reading about it somewhere a few years back. If i can find it, i will post it on here.
Not to sound too much like a hippie, but i really believe that love, acceptance, understanding, and compassion can really go a long way.
Matty says
This mirrors my experience with, and coming off, lexapro. I have been off for over eighteen months, and still feel medicated. I sometimes experience real emotions, but these are fleeting, lasting only a few seconds. I feel it definitely has something to do with dopamine, basically dopamine/serotonin being out of whack, due to receptor damage. My libido is like this too, sometimes there, usually not, and hard to, ahem, finish the job. Thanks for posting, and best of luck.
Mehl says
I am suffering pssd singe mir of 2008 after using an snri for chronic back pain. The urologist diagnosed ipp. But now it was pssd. Brainfog, emotional blunting and cognitive improvement. I was offered more ssri to treat this. They Call it depression. Until 2020 I didnt know it was pssd. Always only called depression. I regret to take These drugs. I am disabled and get suicidal. Life in ruins and perfectly disabled. Divorce because this illness. My former wife pushed me to psychiatrist.