My Seemingly Life-Threatening Propecia Story

Member Stories
#1

My story is a long and complicated one, and I had no idea the Propecia I have been taking for 1.5 years could be the cause of my severe symptoms!

When I started taking propecia for hairloss, it worked magnificently. My hairloss halted nearly immediately! Within 6 months, my hair thickened up significantly. It was as if no hairloss had ever happened! I was very happy with the drug. I’ve never been much of a sexual person; so, my lack of morning erections wasn’t extremely startling to me, and I was still able to have good sex.

October 2008 is when things started going downhill. I started experiencing brain fog, and feelings of being slightly high when I wasn’t taking any other drugs. I had taken extacy and LSD a couple times during the summer, and I figured maybe I was having an acid flashback or two.

In November, I switched to Proscar since it was much cheaper. The difference was immediately evident. My hair starting falling out quickly. In January 2009, I started taking brand-name Propecia once again. This is when things took a further turn for the worse. I started experiencing some anxiety, and I felt like I needed to be alone a lot. I completely lost my social standing. I stopped going out because I’d developed a severe “Fight or Flight” mechanism that would kick in after being present at a party for only an hour; so, I’d run to the next place because I was too anxious to stay.

I started getting worried that I’d really fucked myself up just by doing a little E and LSD a couple times. I thought about it constantly. I stopped hanging out with the people who still did it because I started resenting them and the fact that they didn’t seem as fucked up as I have felt.

Then April 20th came along. I was house-sitting at a coworker’s house and left my propecia at home. Missed two days of it before I was able to go back home to retrieve it. I took it again the night of April 22nd. That night before sleeping I experienced extreme jittery feelings, drug-jaw feeling, and an extreme pressure started to form between my eyes and behind my jaw. Nothing could have prepared me for the next day.

April 23rd: I am a bartender. I went to work and started my routine. I was in the middle of making a drink, and suddenly: I forgot what I was doing. Then, I forgot where I was. I panicked! I was struggling to form coherent thoughts together and I couldn’t! It felt like my brain was sizzling! I became extremely scared. My coworkers knew immediately that something was wrong with me. I couldn’t focus my eyes on objects. When speaking to somebody, I couldn’t focus on their face very well. It gave me vertigo when trying to look them in the eyes.

April 25th, I was looking at a computer screen and noticed it antagonized the pressure in my head to look at it, would make me dizzy, and then I would panic. Suddenly, while looking at the screen, anxiety hit me so hard that I completely passed out and woke up in a puddle of vomit. My coworkers drove me to Urgent Care. The doctor tried to diagnose me with Panic Disorder. This simply didn’t make sense because I have ALWAYS been able to center myself perfectly. I am generally a very calm natured, happy, and positive person. He tried to prescribe me ativan and xanax, which I refused since my mother has a severe addiction to said drugs.

I tried to smoke a little weed to calm myself, but my anxiety, brain fog, and inability to comprehend things only became worse!! Previously, smoking weed was very calming and centering for me.

I thought I was going mentally insane! I would try to look at mountains in the horizon and it simply did not make any sense! I lacked the ability to perceive the whole picture I was seeing at certain points. Upon research, I found that people who are actually going insane Do Not know they are going insane. This made me feel a little better. I also had severe moments of depression that would seemingly come from nowhere. I’d fold myself into the fetal position on the ground and just wait and concentrate for the feeling to go away.

I was also beginning to think I had a tumor or stroke, based on the pressure I was feeling in my head and the inability to form certain thoughts.

I went back to my normal doctor, who figured I had an inner ear infection, which made some sense. I took an antibiotic which completely did not help.

I was also taking Claritin-24hr, and found some evidence on patient forums that this drug is terrible and can cause my symptoms. I stopped taking it. 2 days later I felt a tad better, maybe a little more clear, but most symptoms still remained!

This past Sunday (May 17th), I was driving home from a friends house, was trying to focus on the mountains in the horizon, and the pressure came FULL FORCE in the center of my head. My arms and legs starting tingling and going numb while I was driving! I went straight to the emergency room. I was having heart palpitations, I couldn’t breathe well, the pressure in my head was terrible. I couldn’t sit still. I literally paced around the ER with bulging scared eyes until I could be seen. It felt like I was being choked. I was certain I was going to collapse and never wake up! When I was finally seen by the doctor, he said with all my symptoms there was nothing he could do and I would have to see my normal doctor. This was extremely discouraging since I was so scared!

So, I saw my normal doctor. I had a huge load of blood tests just this monday, the very day I decided to REALLY get down to the nitty gritty with Propecia side effects.

I didn’t want to believe that a drug that was keeping me beautiful would make me feel so terrible. But, I found this forum.

I have been SOO debilitated for many many weeks. It has been getting to the point that I didn’t even want to live if I had to feel this way forever. After reading many of the stories here, I took my Propecia just before going to bed Monday night. 45 minutes later, I started feeling the jitters and anxiety. The pressure was building in my head. It made perfect since that Propecia could be causing this. I went to my dresser, pulled out my bottle of Propecia, and flushed every last pill in the toilet!

Yesterday (Wednesday), I woke up without the pressure already looming in my head, which came back later in the day in more mild form. The real breakthrough came when I was at the Terminator Salvation midnight show. My eyes starting burning, and my skin felt extremely hot, like I had a fever! When I walked out of the theater, the FIRST thing I noticed is that I was capable of Focussing on everything I was seeing outside!! It didn’t ignite the pressure in my head to focus on objects! The rest of the night, I felt more clear than I have in well over a year. I felt like I could see people’s auras if I’d really tried, haha!

Today, I have had some bouts of pressure in my head and slight anxiety, but no huge episodes, and I’ve had many moments of fairly good clarity throughout the day!

When I woke up this morning, I had an erection (a first since I started taking the drug). I’ve never been happier to wake up this way.

I can tell this is going to be an uphill battle to completely recover, as it’s only been 3 days since my last dose. I am keeping high spirits, though, and I’m sincerely hoping I haven’t done severe damage to my brain and body.

I never thought I’d say this, but I would TOTALLY rather be bald than feel like I have with Propecia.

This makes me realize that no matter what the substance, humans are NOT meant to take a pill everyday. It messes with your chemistry.

I want to thank this forum for existing. I also want to thank all of the people who have posted their stories with similar and same symptoms as I’ve been experiencing. I never would have known Propecia could be doing this to me, otherwise, and I would still be taking the drug & further destroying my brain.

Is it more likely than not that I will recover a lot more since I only took it for a year and a half?

Do any of you have recommendations on how I can recover quicker?

#2

I’ve felt the same way as you have since stopping. Have your mental sides and head pressure symptoms gone away? Mine are still lingering after 6.5 upon stopping…not sure what helps besides: rest, diet, cardio.
the headaches and burning pressures are odd because they occur daily and are extremely uncomfortable. nothing relieved them so far.

Anything help you or advice?

To our health my friend.

#3

So, it has been a out 3.5 months since I have quit Propecia. Over the time, I have experienced a lot of things I never thought would happen. Aka: A lot of things repaired that I didn’t even know were broken.

I was completely absentminded to the fact that I wasn’t haven’t morning erections and cared less for sex. Now, I’m mostly a hormonal maniac, which depends on the day.

My face has seemingly changed shape! I have a lot more tissure around the eyes, cheekbones, and jawline, making me look a lot younger! And, my skin is glowing! Love it.

My hair is falling out again; however, I’ve promise myself that I would rather keep hold of my sanity than my hair. It’s an easy sacrifice.

In the recovery time, I have been taking Kirkland brand multi-vitamins and Apple Polyphenol pills in hopes that it will eventually detoxify my brain.

Last month, I noticed little to no head pressure and ultimate clarity. However, when I ran out of multi vitamins a couple weeks ago and neglected to restore their supply, in two days, sure enough, the head pressure came back full force, causing quite a bit of anxiety and bizarre depression.

I went and saw Halloween 2 the other day while experiencing some head pressure, and found it bizarrely phsychologically disturbing, even though I’m normally not affected by things like that. Also, the movie was terrible and I can’t explain why it made me feel so weird. Maybe depression effects?

I also quit smoking weed 3 weeks ago, because I am working on a research project and need to focus. I find that THC helped greatly dimished the head pressure; however, I don’t want to rely on it and cause permanent damage to my lungs.

All in all, many of my symptoms are much better, but sometimes this head pressure right in the middle of my head, that runs from just above my hairline (which is still intact) down to between my eyes, is intoxicating in the worst way. It worsens when I drink coffee or am under stress. It sometimes fatigues me greatly and dimishes my motivation and willingness to accomplish tasks at hand. Could this be a symptom that my adrenal glands are exhausted?? How should I supplement this?

Fortunately, I am able to complete my jobs; though, sometimes it takes significant effort to overcome the head pressure and focus! I don’t feel less intelligent anymore, I don’t feel like I’m tweaking anymore. It’s just this damn pressure.

I am, indeed, dreaming fully again. For a while it was exclusively nightmares. Now, I have some exhilerating and wonderful dreams. However, a lot of times, I will wake feeling slightly off, which is a sign that it will last the whole day. A lot of times when I nap, I will wake with the pressure. Sometimes the pressure doesn’t show up till around 9pm and I will wake feeling clear. It all just depends on the day.

Does anybody have any experience with this level of recovery and then recovering anymore? I’d sure like to rid myself of this head pressure. If it ceases, I think I will be damn near 95% recovered, with the other 5% being the confusing psychological sides I experience once in a great while like the issue at the movie.

May you all be blessed, be positive, and recover further. And may we all, one day, forget about Propecia, how it tainted our lives for months and some of us years, and live a happy life without the fears, the pain, and the unknown.

#4

Get bloodwork to see what’s up otherwise everything is just guesswork.

#5

4.5 years off Propecia update:

Well, it has certainly been a long journey, and I figure I should give an update on my well-being.

Firstly I want to say that, because of the physical and mental symptoms I have suffer over the last few years, I eat far more Healthy than I ever have in my whole life. I try to stay away from things that are difficult on my digestion, because those things seem to make the pfs symptoms creep back into my shadow. Dairy, cooked meats, gluten, nightshades, soy products, refined sugars, and heavy caffeine. There are more, but these are the definite standouts.

I cannot express enough how important nutrition has been to my recovery. I have monitored my B vitamin, D-vitamin, and testosterone levels as closely as cost will allow. I tend to reach tox levels of B, so I only take that when necessary. I have also reached toxic levels of vitamin-D, though when I drop off usage my levels eventually fall below normal. When this happens I take Garden of Life Raw D3 5000iu. I usually eat a meal, break the capsule into a glass of water and chug it down; this way I get max absorption through the fats in the food I’ve eaten. I can literally feel it hitting my bloodstream. D3 use has kept my testosterone right in the 960 region, but I still suffer sexual side effects once in a while. I have to assert that it is very important to get your vitamins from real food sources and not just from supplements! And, so…

…Every morning, I drink a juice from Healthforce Vitamineral Green and Vitamineral Earth. These are the best of powders you can find! They are pure food grocery of the best greens and earth vegetables you can find in the world, grown in the best circumstances possible. Please research them, they have sped my recovery significantly!! I do 2 tablespoons of each in water first thing in the morning. It tastes disgusting, but when you have symptoms like ours, we’re pretty much willing to sacrifice flavor for the benefit of our health; it is an easy compromise for me, and it should be for you too, if you want to heal at an accelerated rate. At this time I also gulp down two tablespoons of cold-pressed hempseed oil. It is far better absorbed by the human body than fish oil, with the perfect ratio of omegas for human absorbtion.

At some other point in the day, I’ll make a smoothie from apple juice base with mixed fruits, hemp protein, and 2 tablespoons of Healthforce Fruits of the Earth. The highest nutritional fruit powder with very low sugar content. These Healthforce powders are expensive! However, the largest sizes last about a month, and if you are diligent about using them everyday, you will notice you require less food throughout the day, and still my weight remains around its usual 155lbs at 6’2". These powders, smoothies, hemp protein, and hemp oil have helped my mental clarity and physical stamina more than anything.

I have also become a regular exerciser! At first, excessive exertion would send my brain fog and head pressure into unfortunate heights. So, I took it slow and built up over time. Now, I run 4.5 miles a day, and also take biweekly Yoga and Pilates classes. I’m a naturally toned person and also fashion oriented, so this regimen keeps me from bulking up too much. With regular practice, the yoga poses have immensely helped my mind reconnect with my body. This way when symptoms do occur, I can come to center and find a piece of me that is whole.

I want to say that one of the worst things you can do for yourself, and something I did repeatedly, is punish yourself for the choice of taking Propecia and fearing you’ll never reach your full potential, that you’ve damaged yourself beyond complete repair, because with this mindset you are setting yourself up for a lifetime of anxiety and depression. I have personally found that through my healthy lifestyle choices, I sometimes feel better than I have in my whole life. That said, some times the symptoms randomly catch me off guard and I have to be prepared to deal with them and do my best to keep going when they arrive.

The head pressure that used to plague me is now non-existent. When it first appeared with brainfog in 2009, I would be having conversations with people at the bar I was tending, the fog would come and the pressure located right where the pineal would be would get so intense that suddenly I couldn’t follow their string of words, then panic would set in, then my vision would have great difficulty focusing. I would watch in panicked horror as a persons eyes, nose, and mouth would literally migrate about their face. It was like my brain temporarily couldn’t compute the visual elements and my visual field would start to look like a Picasso piece. It was so frightening at times that I would have to walk away, sit down, and shut my eyes till I could come back to center. This symptom has not occurred even once since early 2010. Brainfog happens on occasion, and I notice it on nights at work (I’m a server/bartender) where I won’t be able to remember a 3 person party’s order without writing it down. On clear occasions, I can easily remember a 6-person party’s order even with substitutions and special requests! I also notice the fog during acute depressive moments, and sometimes when I’m reading a challenging book. Reading Game of Thrones in 2010 was extremely hard! Reading the third book in the series in 2012 was much simpler, and I imprinted the information in my memory much better.

As far as sexual side effects, I find myself unable to maintain an erection every once in a while. It is really difficult to predict when it is going to happen, and seems unfortunately random. Sometimes I perform great, and sometimes I gravely embarrass myself. I also have to take into account my use of marijuana, which quite literally became my heroine to cope with the symptoms, then it just became a horrible addiction. I feel the estrogen from weed made my sexual, fog, anxiety and depressive symptoms much worse. I am just now on day 10 without weed (I’m quitting permanently!), and I am seeing many more improvements where I previously feared I had met a cap.

Overall this whole experience has made me a much more compassionate, empathetic, and spiritual person, and it has allowed me to help many people around me with their own issues. Because of how aware I am as to how my body and mind feel at all times, I hold a high sense of composure and poise at all times, and am very careful about the way I articulate myself, which has made me a ‘Father/Mother’ figure amongst my friends and family, which is a very nice place to be.

I am also a musician, and though at the beginning of my recovery I had issues with holding rhythm patterns, I am now much better than I ever was before, because I now put so much focus and intention into the efforts.

I would say I am about 70%-160% recovered. I use the spread because at my lowest of times, I would say I’m at 70% of myself before the use of Propecia. And, at the highest of times, because of my newfound mindfulness and health, I sometimes find myself more proficient than even before Propecia. It goes in cycles, and I’m hoping to bring that low 70% up to 80% in the next year.

Good luck to you all, and let me know if you have any questions! Be brave, and continue living your life as best you can, taking each moment as it comes! Be as present in the present moment as you can be!

#6

PBS,

Thanks for coming back to update us. 4.5 years is an awfully long time to cope with PFS, but it sounds like you are in a relatively good place right now. I’m happy for your success.

Just a few of questions.

-Over the course of your last 4.5 years, did you go through a number of ups and downs? For example, did you feel good for a few weeks, then revert back to a worse condition? Or, did you experience a more linear and steady progress to where you are today? I personally, have a few good weeks, even months, then slide back to feeling asexual and semi-depressed/anxious.

-Did your sides include poor sleep? If so, have you seen improvemts over time?

-Brain-Penis connection … Did you suffer this? If so, how is that today?

Thanks.