Sam-e induced PSSD

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)? USA

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?) Google

What is your current age, height, weight? 28, 5’6’’, 140

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?

Zoloft, Wellbutrin, Prozac, Trintellix, Paxil, 5htp, Sam-e

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

Lots of different doses but always on the low end

What condition was being treated with the drug?

OCD, Intrusive thoughts, Depression

For how long did you take the drug (weeks/months/years)?

From age 19 - 26

How old were you, and WHEN (date) did you start the drug?

19 yrs old - 2010

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

27 - 2018

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

When switching meds I would taper, but coming off the last one was cold turkey but was on the lowest dose so couldnt really have tapered unless using liquid form

How long into your usage did you notice the onset of side effects?

Immediately

What side effects did you experience that have yet to resolve since discontinuation?

I couldnt reach orgasm during sex while on drugs - but that resolved after stopping treatment

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 - mild
Complete Impotence
Loss of Morning Erections
Loss of Spontaneous Erections
Loss of Nocturnal Erections
Watery Ejaculate - resolved with time
Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

Mental
Emotional Blunting / Emotionally Flat - mild
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 - anxiety upon waking
Severe Depression / Melancholy - only due to my physical problems
Suicidal Thoughts - only due to what has happened to me

Physical
Penile Tissue Changes (narrowing, shrinkage, wrinkled)
Penis curvature / rotation on axis
Testicular Pain - was gone but has come back slightly
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) - TMJ, ear clicking, acrocyanosis / raynauds, dry skin, loose skin, joint popping, dry eye (burning feeling), insomnia, sensitivity to light, numb skin, burning skin.

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

PRP - Dr. Goldstein
Licorice Root
Inisitol
Others - cant remember

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)?

Lowered T but not lowered free T
All other labs were unremarkable - recently low vitamin C
Positive ANA 1:40 titre
MTHFR gene mutation

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

See below

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

I started Zoloft/Wellbutrin after having depression and OCD thoughts in college at age 18. Simple dietary intervention would have fixed these issues but I wasn’t aware of the risks of trying pharmaceutical drugs at that age. While on the drugs I was emotionally level headed but could not reach orgasm during sex. This wasn’t a huge issue at the time because I knew if I wanted to get off the drug I could and it would go back to normal (and it did). Over the years and different doctors I saw they convinced me I had a “chemical imbalance” and would most likely need to remain on the drugs for the rest of my life. I was naive and I believed them. I tried various dosages and different drugs because after a while they would stop being as effective and I really wanted to find a drug that didnt cause the problem of reaching orgasm. Eventually after 7 years or so on the drugs I did some research online and heard of the condition PSSD. This scared me so I stopped taking the meds - I didnt taper but was on the lowest dose anyways. I did not have any adverse reactions coming off the drugs and the inability to reach orgasm was resolved coming off the drugs. 6 months after this I was still having emotional issues (again I should have focused on diet to help this) but I was aware of PSSD and knew I could not go back on the drugs - so I tried 5htp with little to no benefit so I stopped. Then I tried Sam-e which worked wonders emotionally I felt incredible (due to bombardment of serotonin) but after a few days the tip of my penis went numb. Then I started getting morning anxiety attacks then over the course of a year and a half:

Developed full blown hard flaccid
Reduced / no sex drive
Pain in testicles (has since gotten better)
Burning hands and feet (has gotten better)
Tinnitus
Eye floaters
Eustachian Tube Dysfunction (ear popping)
TMJ (has gotten a lot better)
Cold body (cold hands and feet) (has gotten worse)
Raynauds / Acrocyanosis (pale skin on hands, feet, face)
Numb, loose wrinkly skin (possibly due to low vitamin C but we will see just added a supp)
Popping in joints (no pain though)
Blurry vision
Dry eye
A few times I had de-realization and a few panic attacks
Insomnia

So as you can see I have been busy the last almost 2 years. I would say that the previous SSRI use and 5htp use predisposed me to what the Sam-e caused. There are a few other people that have gotten PSSD from Sam-e and 5htp. Further and further damage or up/down regulation of certain receptor sites etc. A few things have gotten better but overall I have been getting worse and worse - seems like every couple months I have a new symptom.

I have been doing a resistance stretching program called “DCT - Dynamic Contraction Technique” and its helped but I believe by trying different supplements I have made myself worse (dont ask me which ones because I dont know - just in general). I noticed better penile sensitivity after taking licorice root but never took it long due to other peoples story of crashing on it.

I have a C. Diff bacterial infection that my naturopath wants me to take Berberine - but it makes me very nervous to try anything new at this point. I’ve also recently been trying to start doing Carnivore diet- it definitely helps with mood and feeling more optimistic but doesn’t have any effect on my symptoms.

I can still find enjoyment in life and have a great girlfriend, parents, friends but my life has been altered in a way never thought possible. I did not realize that supplements could also cause PSSD - I thought it was only pharmaceutical drugs - big mistake. For now I will focus on doing carnivore diet, doing DCT, enjoying life as much as possible and staying away from any supplement.

I know research is being done to try and figure out why this happens to people but it could easily be another 5-10 years and I intend to live the best life I can until they figure this mess out. I do believe its able to be fixed but there is not enough of a consensus yet as to how to fix it.

I’m joining this forum to learn about the newest developments of this condition and to make sure I dont take anything that could worsen my symptoms.

Ask me anything

Thanks

2 Likes

That’s unfortunate and wild. I found a couple other anecdotes of people who said they had sexual-side effects from SAMe when scouring the internet to see if anyone else had similar problems as me from it.

Also found some people mentioning that SAMe has serotogenic properties, and like you, I also had the inability to orgasm while taking Zoloft years ago, in addition to it worsening existing PAS sexual symptoms, but that cleared-up after stopping.

Some goofball tried to convince me the side-effects from SAMe and methyl-B-12 were a detox reaction, because nothing “natural” like extreme megadoses of vitamins or a substance that is available by prescription only in some countries could be harmful, right? :neutral_face:

Seems as if the combo of SAMe and methylcobalamin is notorious for insomnia severe enough that people were seeking medical help over it. My insomnia lasted a year before letting-up. It was Hell. Hope it has been improving for you with time.

btw- Please participate in the post-drug symptom survey. Just go about it normally and fill in “SAMe” when it asked what “other” substance you took.

Hi man. I read about pssd, decided to get off the meds and… here I am today.

Regarding the diet thing, I also as you had mental struggles, mainly with ocd and anxiety. As soon as I went on low carb high fat diet (almost ketogenic infact) my anxiety and ocd went away. It eats me up everyday knowing many people including me and you could simply change diets. But yeah, diets aren’t profitable as those devil meds.

I hope things will get better for you. Good luck

I completely agree - doing a low card diet works wonders on my emotional state and really helps with any anxiety or depression. I really wish I had done this instead of going the drug route.

Try to fix your c diff infection.
There are recovery stories of PSSD people who just had to fix their gut issue.

I know but not sure the best way to do that - my naturopath suggests using Berberine - but there are mixed reviews on it - a good amount of PSSD people have tried it with varying results - he also suggested Aliciin - which also someone on this fourm said they crashed taking that stuff. I will keep looking for a safe way to kill off the C Diff and if I experience any improvements I will certaintly make a thread on my results

Can I ask how you found this out? Did a doctor test you for this and what were the indications for testing you for that? Or did you seek out this testing?

there are a lot of methylation tests you can do - I did this test with a naturopathic doctor. I would look up Ben Lynch if your interested in this - he basically is the expert on methylation and MFTHR

Check if Biofecal Therapy is an option for you, it has success rate around 90%.
But i don’t know if it’s approved and covered by insurance in your country.