My Story - Involuntary Head Movements

PFS FORUM INTRODUCTION

Where are you from (country)?
United States

How did you find this forum?
Google search / online research into post-finasteride syndrome

What is your current age, height, weight?
24 years old | 5’4" (162.56 cm) | approximately 158 lbs (71.8 kg)

What specific drug did you use?
Finasteride

What dose did you take?
0.5 mg every 3 days

What condition was being treated?
Hair loss (androgenetic alopecia)

For how long did you take the drug?
Approximately 2 weeks

Date when you started the drug?
September 2025

Date when you quit the drug?
September 14, 2025

Age when you quit?
23

How did you quit?
Cold turkey

How long into your usage did you notice the onset of side effects?
Side effects began while still on the drug (loss of libido, watery semen, severe brain fog). Major crash occurred the day after discontinuation.


Side Effects That Have Yet to Resolve Since Discontinuation

Sexual

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

Mental

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

Physical

[x] Penile Tissue Changes (narrowing, shrinkage, wrinkled) β€” discoloration, dark/spider veins, disconnected feeling
[ ] Penis curvature / rotation on axis
[x] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[x] Genital numbness / sensitivity decrease β€” including cold genitals
[x] Weight Gain β€” approximately 10 lbs since crash
[ ] Gynecomastia (male breasts)
[x] Muscle Wastage
[x] Muscle Weakness
[x] Joint Pain β€” especially knee instability and jelly legs
[x] Dry / Dark Circles under eyes β€” significant periorbital changes, under eye wrinkles, aged appearance

Misc

[ ] Prostate pain
[x] Persistent Fatigue / Exhaustion
[x] Stomach Pains / Digestion Problems β€” GI discomfort, gas
[ ] Constipation / β€œPoo Pellets”
[x] Vision - Acuity Decrease / Blurriness β€” worse peripheral vision, spatial awareness loss
[ ] Tinnitus (ringing or high pitched sound in ears)
[x] Hearing loss β€” reduced hearing, difficulty hearing
[x] Increased hair loss β€” diffuse and crown thinning, texture changes, dry/brittle hair
[x] Frequent urination β€” bladder constantly feeling full quickly, weak stream
[x] Lowered body temperature β€” cold hands and feet, cold genitals

Other

[x] Involuntary head and facial movements (myoclonus) β€” becoming baseline daily symptom, spontaneous isolated head shakes at rest with no trigger, worsening over time
[x] Rapid eye blinking / blepharospasm β€” severe enough to prevent driving
[x] Coordination problems β€” difficulty walking, loss of coordination, jelly legs
[x] Numbness in hands and legs β€” peripheral neuropathy, hands falling asleep, numb heavy limbs
[x] Hand tremor and difficulty moving fingers β€” including left pinky positioning
[x] Severe cognitive dysfunction β€” MCI confirmed on neuropsychological testing, cannot perform simple sequential tasks, unable to read/write effectively, social processing loss
[x] Hypnagogic hallucinations
[x] Dissociation / depersonalization / derealization
[x] Sensory overstimulation β€” crowded or loud environments overwhelming
[x] Peripheral vision loss and spatial awareness reduction
[x] Trouble swallowing / lack of saliva
[x] Lack of sweat / anhidrosis
[x] No sebum production β€” scalp and skin completely dry
[x] Slow wound healing
[x] Loss of collagen β€” facial, periorbital, gum recession, narrower bite, raw soft gums
[x] Sparser beard / facial hair color change
[x] Body hair color changes β€” lighter/blonder in places
[x] Foamy urine
[x] Swollen lymph nodes
[x] Imprinting on skin / sensitive skin / less skin sensitivity
[x] Shallow breathing
[x] Heart rate increase upon waking
[x] Sleep does not feel restorative β€” broken sleep, maintenance insomnia
[x] Anger outbursts
[x] No body odor changes β€” lack of smell
[x] Aged face / accelerated facial aging
[x] One arm going limp when other hand is active
[x] Increased fidgeting / need to move
[x] Difficulty hearing
[x] Unable to anticipate weight of objects
[x] Word substitution errors when typing/speaking
[x] Loss of shame / social filter
[x] No stamina / exercise intolerance
[x] Muscle twitching


Treatments Undertaken Since Discontinuation

Medications trialed:

  • Guanfacine ER 1mg (current) β€” mixed results, helps anger spikes and episode duration, worsens emotional blunting, genital numbness, brain fog
  • Adderall β€” 2 days, minimal benefit, possible mild increase in head movements
  • Wellbutrin β€” 3 days, stopped due to palpitations and anxiety attacks. Notable: dramatically increased motor precision during use suggesting pre-existing dopamine deficiency
  • Doxepin 3mg β€” started recently for sleep maintenance insomnia, some early benefit
  • Tadalafil/Cialis β€” intermittent use for ED support

Current supplements:
Vitamin D3/K2, Vitamin C, Copper bisglycinate, Magnesium glycinate, Taurine, Glycine, Citicoline, Melatonin, Digestive enzymes, B-complex without B6 (methylcobalamin + methylfolate + myo-inositol 550mg)


Blood Test Results (Key Findings)

Confirmed Abnormal:

  • Copper: 64–73 mcg/dL across three draws
  • Ceruloplasmin: 16–17 mg/dL
  • Progesterone: <0.5 ng/mL
  • Pregnenolone: 38 ng/dL
  • Androsterone: 51 ng/dL
  • Vitamin B6: 32.4 β†’ 53.2 ng/mL
  • 3A-ADG: 762 ng/dL
  • Estradiol ultrasensitive: 28–34 pg/mL
  • LH: 2.4 mIU/mL
  • Ferritin: declining 110 β†’ 69 ng/mL
  • CoQ10: 0.92 ug/mL

Imaging/Testing:

  • Brain MRI x2 β€” normal
  • EEG β€” normal
  • CT head β€” normal
  • Home sleep study β€” normal (AHI 0.96, no sleep apnea)
  • Cardiac echo, holter, EKG β€” normal
  • Neuropsychological testing β€” confirmed MCI with impaired memory and processing, executive functioning deficits

Pending:
24-hour urine copper, SFN biopsy, autonomic testing, home EEG, CK, IGF-1


My Story

I am a 24-year-old male from Florida. I took finasteride 0.5mg every 3 days for approximately 2 weeks in September 2025 for hair loss. While still on the drug I developed loss of libido, watery semen, and severe brain fog.

The day after stopping on September 14, 2025, I experienced an abrupt crash at work. During my shift, my processing completely shut down. I had severe difficulty understanding my coworkers, became uncoordinated, and was unable to keep track of tasks. The episode was severe enough that emergency services were called. Acute evaluation at the time was reportedly normal.

In the two weeks following the crash I noticed sugary foods helped during crashes and I was experiencing frequent adrenaline rushes. These early responses have since stopped working or changed character.

Over the following months I developed a progressive and broad multi-system syndrome affecting cognition, movement, sleep, sexual function, peripheral sensation, connective tissue, and autonomic regulation. The most atypical feature of my case compared to typical PFS presentations is the involuntary head and facial movements (myoclonus/blepharospasm) which have been progressive and are now becoming part of my daily baseline rather than purely episodic. These were severe enough that I can no longer drive some days.

I have had to withdraw from college due to my symptoms. My neuropsychological testing confirmed mild cognitive impairment with executive functioning deficits secondary to post-finasteride syndrome. A movement disorder specialist referral has been made. I am currently under the care of a neurologist, endocrinologist, cardiologist, and psychiatrist, and have appointments scheduled with Dr. Harlan Bieley and am on the waitlist for Dr. Will Powers.

Recent endocrine testing has revealed confirmed copper deficiency, essentially undetectable progesterone, elevated androsterone, and borderline elevated estradiol. These findings alongside my symptom presentation suggest a possible severe neurosteroid pathway collapse. If any other members have a similar instance of involuntary head movements that resemble tourettes please share your experience and if anything helped.

I took finasteride for two weeks. It has now been six months. I am still fighting.

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