Mcbbould's story


#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?) Google

What is your current age, height, weight?

28, 5’8, 160

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

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

What condition was being treated with the drug?

MPB

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

2 days

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

How old were you when you quit, and WHEN (date) did you quit?
27
How did you quit (cold turkey or taper off)?
27
How long into your usage did you notice the onset of side effects?
first day
What side effects did you experience that have yet to resolve since discontinuation?
complete virtigo/dizziness, inability to recognize faces, zero appetite
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
[X ] Loss of Libido / Sex Drive - slightyly not really
[ X] Erectile Dysfunction Super mild
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
[X ] Emotional Blunting / Emotionally Flat
[ X] Difficulty Focusing / Concentrating
[ X] Confusion
Memory Loss / Forgetfulness
Stumbling over Words / Losing Train of Thought
Slurring of Speech
[X ] 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
[ X] 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”
[X ] Vision - Acuity Decrease / Blurriness
Tinnitus (ringing or high pitched sound in ears)
Hearing loss
Increased hair loss
Frequent urination
Lowered body temperature

[ X] Other (please explain)

Please read my story for the detailed list

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

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)?

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.

My Story:
This all started when I was 27 (~8 months ago). I was living a completely normal life, have a great job, live in a big city, a huge group of friends, and a strong support group. Basically, everything in my life was going perfectly. At this point, I was probably one of the healthiest people you’ve met - aside from slightly high cholesterol (not above range) I have never had a health concern. I did get my tonsils removed when I was younger, but that’s it. Additionally, I have taken ADHD medications, but very rarely. I took them more in college, but I sort of “outgrew” my ADHD as I got older. Otherwise, I have never had any mental health issues. Always social, never depressed or anxious, and I’ve never taken an SSRI or Benzo or really any other prescription drug except for ADHD meds and antibiotics when I would get sick. Now for the fun part… On April 26th I started taking Propecia preventively because I have a history of MPB. I wanted to take it “proactively” so I would never lose it. I took my first pill before bed. The next day I went to a coffee shop to do work and I noticed I felt pretty strange (like I was hungover or something). I didn’t think much of it and continued with my day. I realized that I felt strange enough not to take the pill that night. I intentionally skipped. I went out drinking with my friends that night and felt okay the next morning. Still strange but I thought it was actually a hangover this time. That night I decided to try the pill again. I took it before bed and that’s when everything went wrong. I woke up the next morning and the room was spinning, and I was extremely dizzy. I stumbled my way to the bathroom and pulled myself up against my sink. I knew something was terribly wrong because my image in the mirror was distant and blurry. Additionally, everything around me was echoing. It reminded me of the movies when a bomb goes off near a solider. everything was in slow motion and my eyes would not track. This lasted at this intensity for about a week. After the week it diminished in intensity, but to this day I am left with these symptoms plus more. My symptoms are as follows in order of severity. Most are 24/7 unless otherwise noted.
• Decrease in consciousness (24/7 never any change) – this is the worst and also hardest to describe. I believe this symptom is highly visual. The best way to describe this is as if I am under the influence of a drug. When walking outside it feels as if I am in a literal bubble. Everything around me seems distant almost as if I am wearing the wrong prescription glasses (although eyes are fine). As if my eyes are set back 6 inches inside of my head. I describe it as my ability to interpret the world around me as being “turned down” – like my brain can no longer handle all the stimulus. This is less noticeable when I am inside – I think because there is less detail in my environment. This also makes it hard to focus on detail (like looking at a leaf or a flower). I understand that this sounds extremely strange and maybe even psychological, but it does not feel that way. Emotionally, I am completely connected to the world around me (don’t think its derealization).
• Vision issues
o Blurry/distant/foreign appearance when I look in the mirror – seems as if I am looking through the side mirror of a car or a very mild funhouse mirror
o Shaky/wavey lines when I look at something, especially straight lines they will begin to vibrate/move.
o Sparkles/stars with little exertion – lifting something heavy or sneezing or having my back cracked will cause little sparkles to dart around for 30-45 seconds. This never happened before.
o Reading difficulties – the words appear different. I remember this distinctly when this all happened. It was as if the words on the page were no longer clear and easy to read. They are not literally moving, but they don’t seem “clear.” This is especially obvious with black text on white font.
• Head confusion – hard to describe but I get this confused feeling that seems to stem from my eyes. It’s almost like being dizzy/drunk in the eyes and makes interpreting things around me difficult. This gets better and worse, but not sure why.
• Head pain in the upper right of my head – This one comes and goes, but it’s a single focal point of pain on my head. It feels like the size of a sliver dollar and when my symptoms are worse it seems so is this spot.
• Head Pressure – I have head pressure that comes and goes every day. Its usually worse when I go to lay down in bed.
• Strange fuzzy feeling in my head – very hard to explain but its tied to the confusion. Its as if something is interrupting the signals in my brain and producing a weird feeling. Like an engine that still runs, but the oil is old and dirty.
• Brain shocks while falling asleep. As I fall asleep I will get jolts in my head
• Muscle twitches – muscles will twitch before I fall asleep. I will not even close to sleeping and I will get twitches throughout my body.
• Fall asleep really quickly – I fall asleep extremely fast; however, I am in this weird limbo state where my thoughts are moving around incoherently and I am sort of dreaming. I go between this mode of sleep and being awake almost all night. I know I am not getting good sleep because of this and I always remember 3 or 4 dreams a night.
• Fatigue – I am very tired throughout the day.

After the first week, I decided to get my blood work done and this is what it showed (date collected 5/9/2018):





After this, I decided to pursue another doctor and saw an endo. The endo wanted to see what my androgen levels were in more detail so he ordered the following tests (collected on 5/31/18):

The Endo saw that my T was super high and doubled since my first test and said he thought maybe my adrenals were producing too much androgen and he wanted to test DHEAS to prove this. He tested DHEAS and it came out above range as seen below (date collected 6/14). My symptoms remain and were/are as follows: less/light feeling in the left side of my body, derealization (not emotionally, but visually) - feeling like everything around me is moving faster than i can interpret. I describe it as my eyes being set back inside my head a few inches such that everything is not within grasp or comprehension. Head pressure, headaches, brain zaps, muscle twitches, and overall confused pain in my head. Its not fog but almost like I am super hungover and thinking hurts (literally hurts) - scrambled/fuzzy/dizzy head is the best way to describe this. Even looking in the mirror is distorted and blurry, like looking at a mild fun house mirror.


After this my endo asked me to take a Stim test, but i havent done it yet. Because my systoms were strictly neurological i perused a top neurologist. I had three MRIs done (2 MRIs, 1 MRA), an EEG, and every blood test she could think of. My symptoms above still remain. Please note i may have been experiencing sexual side effects but my mind was so messed up that i couldnt care enough to check. Now, i am fully able to have sex and believe this has always been the case.

Below are the tests that my Neuro performed (collected 6/14)






Next, I get a recommendation to another neuro and she performed the following tests on (collected 8/14)

These are all the tests ive had done. I’ve also done neurofeedback, but they didnt come up with much. My symptoms are still as listed above. I do not think a simple supplement or diet can fix me, although ive tried it all.

Thanks so much for reading. I still need to edit and review the info
Best,
M


#3

Sorry to read that buddy. Have you had fluctuations in symptoms? I know you said some things are different at particular times of the day but does anything change from one day to the next?


#4

Hey thanks for responding! Was hard for me to post that.

No real changes in a while. There was a big change after the first week (I could walk again) and than after a few month a significant decrease in the derealization. I know this because when I drove before cars would seem literally distorted and distant, now when I drive things look more or less normal (but my eyes don’t focus properly) otherwise the symtoms are the same. Vision and weird mirror thing are the most bothersome. Also, I say “vision” but it’s really a perceptual change in how I ingest the world around me, but in a visual sense. Other changes - I had TMJ badly but that went away, it seems to come and go. I also had a random “crash” about three months in after a party and I went back to not being able to walk. I can’t even describe what that feeling is like. It assume it would be like tripping on hardcore drugs right after going on a The spinning t-cup ride at the fair. It was like that feeling when the car next to you starts pulling away, but you sorta feel like you are moving as well. I had that for 1 week straight.


#5

I think I could tell. I didn’t really have much to say, but I wanted to say something.

I had an episode of the “6 inches” back viewpoint not long after my crash, it’s a good way of describing it. A bit like watching something filmed in first person perspective, I could see my hands reaching for doorhandles, etc but I didn’t really feel like I was fully connected to it.

You’ve been dealing with this stuff longer than I have and obviously so I wouldn’t attempt to tell you how it is, but I try to focus on my improvements and that some things have been in flux would suggest to me that you can get back once we know a little more, or even with natural recovery. I also don’t put much faith in diet when it comes to fixing things (though I know it has the capacity to worsen things) but when you’ve noticed any changes, I hope you’re able to spot patterns and replicate/avoid what you did.

I’m glad you’ve shared what you’re going through. Fingers crossed for a better time for both of us in 2019.


#6

Agreed! I’m also proud that I’ve been able to live a normal life (externally speaking), keep my job, and maintain my presence in society.


#7

You should be proud. It’s a great testament to your strength and character. I find people’s resilience and ability to just keep on fighting really inspiring, especially when I’m struggling. I’m sure that plenty of people reading what you’ve written will feel the same. Thanks for taking the time to write it down.


#8

I wanted to be comprehensive and add that from about six months prior to taking fin, I was using rogaine, perscription grade ketoconazole shampoo, and perception retin-a cream. I went into the derm for a mole and he so kindly told me he saw very early, hardly noticeable, signs of MPB and that I also had small wrinkles under my eye. Btw - I still have a full head of hair. He also perceibed me fin but I didn’t take for six months. I used all of the above with absolutely no problems. After about six months I decided to try The fin and that’s when my member story continues.


#9

Hi All,

wanted to share an update:

I am currently seeing a functional neurologist. They ran a bunch of test and they confirmed that they found some anomalies in eye movement, balance etc. I am doing a rehabilitation program that they have, so i will keep you all posted. They were telling me that they often see drug related neuro issues, specifically around the HPV vaccine (they had a patient who was so bad she could not walk). It was interesting because they were telling me these vaccines can cause neuro-inflammation and also cause virus to become active. I thought this was interesting given all the talk about PreP and Valtex, etc.

Anyways i will keep you guys posted on how this goes. I am cautiously optimistic, but they told me they were able to re-balance a lot of the folk with medicine, vaccine, and TBI related issues.


#10

Great news! I hope it goes well for you.