Jrums01 introduction-Dead yet still alive

ssri

#1

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)?
US

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)
PSSD forum

What is your current age, height, weight? 37, 5’4 126 lbs

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Every SSRI, Zoloft started "mild’ PSSD, Prozac made it much worse

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
20mg Prozac

What condition was being treated with the drug?
OCD, anxiety, depression

For how long did you take the drug (weeks/months/years)?
18 years on and off

How old were you, and WHEN (date) did you start the drug?
I was 18 when I first took SSRI

How old were you when you quit, and WHEN (date) did you quit?
36, January 2018

How did you quit (cold turkey or taper off)?
Just quit

How long into your usage did you notice the onset of side effects?
Almost immediately noticed low libido and anorgasmia

What side effects did you experience that have yet to resolve since discontinuation?
No libido, erectile dysfunction, penile shrinkage, no emotions, genital numbing, numbness all over body, dry skin and eyes, loss of taste and smell, severe insomnia

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
Loss of Libido / Sex Drive
Erectile Dysfunction
Complete Impotence
Loss of Morning Erections
Loss of Spontaneous Erections
Loss of Nocturnal Erections
Watery Ejaculate
Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

Mental
Emotional Blunting / Emotionally Flat
Difficulty Focusing / Concentrating
Confusion
Memory Loss / Forgetfulness
Stumbling over Words / Losing Train of Thought
Slurring of Speech
Lack of Motivation / Feeling Passive / Complacency
Extreme Anxiety / Panic Attacks
Severe Depression / Melancholy
Suicidal Thoughts

Physical
Penile Tissue Changes (narrowing, shrinkage, wrinkled)
Penis curvature / rotation on axis
Testicular Pain
Testicular Shrinkage / Loss of Fullness
Genital numbness / sensitivity decrease
Weight Gain
Gynecomastia (male breasts)
Muscle Wastage
Muscle Weakness
Joint Pain
Dry / Dark Circles under eyes

Misc
Prostate pain
Persistent Fatigue / Exhaustion
Stomach Pains / Digestion Problems
Constipation / “Poo Pellets”
Vision - Acuity Decrease / Blurriness
Tinnitus (ringing or high pitched sound in ears)
Hearing loss
Increased hair loss
Frequent urination
Lowered body temperature

Other (please explain)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
All supplements and vitamins, Lyrica and benzos for sleep

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?
LH-7.3 (1.7-8.6)
DHT-53 (30-85)
FSH-6.1 (1.5-12.4)
Prolactin-23.7 (4.0-15.2) High
Estradiol-29.4 (7.6-29.4)
Prostate-specific Ag 0.4 (0.0-4.0)
Testosterone 734.8 (264.0-916.0)
Sex Horm Binding Glob 34.6 (16.5-55.9)
DHEA-Sulfate 218.1 (102.6-416.3)
Progesterone 0.3 (0.0-0.5)
TSH 0.946 (0.450-4.500)
T3 79 (71-180)
T4 1.20 (0.82-1.77)

Anything not listed in the above questions you’d like to share about your experience?

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

I am now 37 years old. My life has been filled with mental and physical problems and the damage done by the medications used to treat these conditions far surpassed the damage of the original problem. I’ve been on and off antidepressants, and other drugs, since I was 18. I was also on benzos, opiates, and a host of other drugs for various conditions. I took Accutane for severe acne and wound up with ulcerative colitis. I also had a pilonidal cyst that didn’t close for 7 years because of the inflammation from UC and required multiple surgeries. I was given Cipro during this time and wound up with terrible tendon and joint pain in my hands and feet and lost feeling in both my hands for two years. Later I was given other antibiotics during this time and wound up with almost deadly C.Diff twice. I was given opiates for the pain and wound up abusing the shit out of them. I also was on benzos for my severe anxiety and abused them too. I was self-medicating. If I successfully sued drug companies for damage done to me I would likely be a millionaire.
But the drugs that caused the most damage were the the so-called “safe” SSRIs. I was given Paxil at 18. I was struck young with the pure obsessional form of OCD. Intrusive thoughts and all. I also was anxious generally and socially. I remember the commercial for Paxil talking about how good it was social anxiety. I went to a psychiatrist and discussed it. They never mentioned ruined sexuality as a side effect. I remember losing my virginity not long after being on Paxil. I couldn’t orgasm and had way less sensation. This happened multiple times. I even tried to “fake it” once. It makes me sick that I put up with these effects for so long. I would then go on and off these drugs for the next 18 years. And while they worked for awhile for pure obsessional thinking, they weren’t that effective and the side effects were often overwhelming. One side effect that was both good and bad was the emotional blunting. Never get too low but also never feel to happy. These medications raise serotonin but they also inhibit dopamine. That greatly effected my abilty to feel pleasure. No wonder I chased other drugs to feel “high”.
Anyway the side effects would usually go away when I stopped the drug. I went on Zoloft in 2016. When I stopped I noticed my libido didn’t come back. I still had one but it felt like I was still on Zoloft. Lack of morning erections as well. But the truth is my morning erections were inhibited for a long time with these meds so I didn’t realize what that meant. But I also had premature ejaculation, even when masturbating. I thought that was weird. Those things don’t usually go together. I certainly didn’t know that was was some kind of brain/nerve damage. I also noticed my erections weren’t getting as big. I thought it was libido related but know I know it may be tissue damage. I even doctors about it and they figured it was depression related. Of course we discussed Viagra but how that wouldn’t bring libido back. One doctored suggested maybe testosterone related and that it could be fixed. I had thought the same thing. If only I had known it wouldn’t be that easy.
In 2017 I really was hooked on benzos and was in a bad spot. I was offered an SNRI in detox. I expressed my concern to the psychiatrist and was told it was not possible and that I shouldn’t worry about it and libido would come back when I felt better. I didn’t know about PSSD and stupidly took it. I also met a girl in around this time so I stopped taking it after a month cause I wanted to have sex. I could still perform somewhat but things weren’t coming back at all. I admittedly was on some confounding substances at this point. Anyway she turned out more messed up than me and it was a disaster break-up. Wound up at a psychiatrist and was given Prozac. I stupidly and to my eternal regret bought into what the doctors were saying and didn’t know how much worse it could get. In fact I only took the drug for a few weeks then stopped. I had enough of the sexual and emotional side effects. I stopped in late January and progressively got worse. A month went by and I noticed I could only get a half-hearted erection with manual stimulation. I then realized my genitals were getting more numb. I also noticed I couldn’t focus on anything but didn’t put that together with the sexual effects. In late May I began being shot awake at 4 am consistently. If I went to bed at 2 I was wide awake at 4. It felt it in my stomach. Even if I took a sleeping pill it didn’t matter. Some people refer to it as a “cortisol awakening”. Then one day in early June, over 4 months since stating antidepressant, I just finished a half-hearted masturbation. I was lying in bed and I felt like my brain actually shifted a or shut off. My body and genitals went completely numb and I could no longer feel emotion. Libido went completely as well. A few days later I noticed the shrinkage. And on and on.
At the moment I have the worst of the syndrome. No emotions, no libido, stopped sleeping naturally completely, genital and body numbness, no taste or smell. dry skin and eyes and mouth, hair thinning, shrinkage and scarring in penis. I am basically a dead person. A fucking zombie. No sexuality, love, sadness, happiness, anger, empathy, or any other human thing. I can’t even perceive the feeling of tiredness. I’ve already tried TMS. Didn’t work for me although it may have helped with derealization and akathisia that I and the first few months. I’ve tried and am still taking some vitamins and supplements but nothing helps. At the moment I have to take large dose of Halcion and Lyrica to sleep. Don’t really dream though. And even in my dreams I have no emotions. This is serious neurological damage.
I am seeing Dr. Goldstein next week. I’m not optimistic though. I also know I will go further down the medication rabbit hole but I don’t give a shit. I’m over it. If this is my life I don’t want it. I’ve suffered enough in life. Ironically a lot of my suffering is due to medication that was designed to ease my suffering :thinking: Truthfully I’m ready to jump in front of a train. But at least they sell nitrogen tanks online for a peaceful ending to this. And what kills me is that I never got to fully enjoy my sexuality due to either mental and physical issues. Much of it medically-induced. I had just signed up to go back to school and was dating some and getting more confident. I had always looked young also but what’s happening is taking a toll physically and will get worse. My last chance at life is slipping away. And honestly I’m tired of life anyway. I’ve been fighting my own brain and body for awhile. And now they have both failed completely. Anxiety had ruined my life. Ironically now my anxiety and OCD are mostly gone. Only at the expense of every other human emotion.
Sorry for the long story but I needed to piece together how I got here. I have so many regrets. I wish I had googled PSSD. But I mainly regret ever taking an SSRI. Although I needed to take something at one point in my life because my obsessional thinking was killing me, it was too much for too long.
Anyway I will keep everyone updated about my visit with Dr. Goldstein.


#2

Hi there jrums01

Thanks a lot for posting such a detailed account of your difficulties. I’m so sorry that the medical profession and their prescribed medications has protracted and compounded your early life difficulties with this unnecessary pain and suffering. I can understand you feeling that you have reached the limit of what you can endure, but I encourage you to please stay with us. Your coming here is part of a uniting of different victim communities with a shared symptomatology. There are projects taking place which you can contribute to: Important Announcement: Two Community-Led Research Projects - Please Participate

We as a community have come a long way. There exists a foundation (pfsfoundation.org) which is actively looking at why this has happened and subsequently to look for solutions. Your coming on board is part of this process. Although we still have some road to travel, this is something tangible.

You are still a young man with a lot to give and contribute in your life. Please hang on. There is hope.

Thanks again for sharing your story.


#3

Thank you for your kind words. I am ordering my 23andme kit in a couple of weeks.


#4

A warm welcome to our community. I am very sorry to read about your story, that is one hell of an ordeal that you have been through. Even though we’re all coming from different places (speak medications), we all seem to speak the same language symptom wise. I wish that this community will give you some additional strength to keep on going, and keep up hope.


#5

Thanks Awor. I guess in some ways it prepared for suffering. But some of these things happening to us are really hard to conceive. It’s happening to me and I still can’t believe it.


#6

Hey @jrums01,

I am so sorry to hear about the tremendous difficulties you are facing! I know you are here because of your sexual issues but for someone who has been on antidepressants for so long you may also be experiencing issues related to protracted withdrawal as well, which for a while can be even worse or at least more acute than the sexual dysfunction issues. (I hope nobody gets offended by the comparison). I know because I have been there.

Just like in the case of finasteride up-regulating androgen receptors, SSRIs physically change the brain as serotonin receptors get down-regulated. After stopping the drug, the brain is in severe serotonin deficiency for a very long time, and that’s just the physical side of things, nothing to speak of the psychological one. I would recommend you check out the survivingantidepressants.org forum as well.

Hang in there! You are not alone.


#7

Thanks. I have been on survivingantidepressants. There is a definite overlap with PAWS and PSSD as far as lack of emotion, insomnia, etc. It really is body-wide damage.


#8

I keep trying to do things I use to enjoy and it doesn’t work. I’ll look up a girl I used to see on Facebook, or try to watch a movie, or porn, or football. Or smoke my medical marijuana. And nothing works. It’s just a futile attempt to feel better or reconnect with the person I was. Life is boring now.


#9

Try ginko biloba there is a study that it can improve PSSD.

https://www.ncbi.nlm.nih.gov/m/pubmed/9611693/


#10

Thanks. I have tried it. It helped some with cognition but not the sexual and emotional side effects. But I read that it can interfere with benzos which I take for sleep so I had to stop it.