[i]This is my story. Believe it or not, this is exactly what had happened. I will never forget this episode of my life and it has completely changed my outlook on health and living. I went through a range of stages that many of you may relate to. I think my symptoms may have been worse than the normal propecia sufferer but they all are very similar to many of the experiences to everyone in this group. I tried to make it as detailed as possible so you can get another perspective.
I am currently 23 years old and took propecia for only 6 months. I have been off of propecia little over 1 year.
If you have any questions, reply to this board.[/i]
I first started taking Propecia when I was 22 years old. I started to take it 1.5 years from ago.
I noticed that my hair began to thin after taking a shower and went into a panic. Little did I realize that EVERYONE’s hair begins to thin after hitting 20.
Being the anal person that I am, I began to scour the internet for solutions. I stumbled across a website called hairlosstalk.com and read many posts regarding hair loss. It seemed that everyone touted propecia as the miracle drug that will end ALL baldness and gasp has NO side effects. People seemed pretty adamant about denying other people side effects. I should have read more in between the lines.
I purchased some 5mg proscar from India and cut them into 1/4s. I was popping pills daily and didn’t really notice anything until about 2 months into my protocol.
I noticed that I suddenly had a huge surge in testosterone. I could feel my libido shoot through the roof and my muscles would bulge and swell like the time I was heavily lifting for sports.
My face would be greasy and I would get pimples all over my face. I normally do not get pimples easily.
This continued for about 3 weeks straight and then I noticed that I began to get really really emotional.
Little things would make me really upset or I would OBSESS over things any pretty girl would say. I would look in the mirror for hours. I even began to read poetry and started to listen to song lyrics (normally I don’t even pay attention to that crap). It was ridiculous.
When I look back on that moment of time, I am convinced my mind became the mind of a woman. Now I understand why women get so crazy so times, it’s their freaking hormones and they can’t control it.
After about one month of that crap, my body began to change again. My hair started to stink ALL the time. It felt like I was always on a caffeine high and the smallest things would agitate me. It felt like my mind was always concentrating and going 100mph.
After about 2 weeks of that, my body started to really burn out. I attribute this to the stress/additional cortisol my body was expressing trying to constantly rebalance the shift in hormones.
You know the burned out feeling you get when you stay up without sleeping for a day or two? Like the ringing noise in your ear and the burned out feeling in the back of your head. I was in that state of mind for another few weeks.
It still felt like I was on way to much coffee. It was impossible for me to sleep and I was taking double the strongest recommended dosage of prescription sleeping pills. I normally take 1mg of lunesta (1/3rd of my dosage) to fall asleep but at this time I was taking 6mgs.
I still would have a hard time falling asleep and many times I would wake up thinking I was going to die. My heart would pound as if I had way too much adrenaline in my system.
After another few weeks of that, I started to get a burning sensation in my lower right back. I didn’t think too much of it, but it started to get worse. After about a week, my lower right back muscles began to twitch also.
This is about the time when I noticed I was hesitating a little bit when I started to urinate.
This was also the start of my twitching episode. When I would get really stressed, the twitching would get worse and worse and eventually started to shift to other places in my body. The twitching still hasn’t stopped after 1.5 years but it has almost disappeared. Since then, it would shift everywhere after a few days. Calf muscles, eyes, face, back, armpit, chest, etc…. I think this is where my nerves were damaged and finally healing, but who knows.
A few years ago, I had a minor case of IBD (Irritable Bowel Syndrome). It went away after a few weeks of medication but during that time I had an irritated colon and would poop out blood.
The stress seemed to have re-triggered this condition and I began to poop blood again. I didn’t think the proscar was the cause of my lower back burn so I hypothesized that it was my IBD that was causing that sensation.
I went to my internalist and got a colonoscopy. They just said it was from stress and gave me steroids.
Even though I felt terrible and had no idea why, my hair was stronger than ever and I decided to get off the propecia.
I stopped taking propecia for about 3 weeks. Now that I look back, I did get better. The twitching stopped, the thoughts of death went away and my pimples began to disappear. I didn’t notice it because the whole time I never thought that the drug would be the cause of all these problems.
After being on propecia for approx 3 months, and taking a little break I decided to go back on the drug.
This is when things began to spiral downhill.
After about another month on the drug, the brainfog hit me HARD. It was so hard for me to put simple thoughts together. I was constantly in a stupor and it was hard for me to finish simple sentences. At this time, sports seemed to amuse me much more. After work, I just wanted to come home, watch sports all day, and crack a beer. I think this was the other extreme from the previous emotional episode. I think my mind was more “manly” at this time but that’s just a hypothesis.
I also noticed that my libido completely disappeared. Not only could I not get an erection, pornography or women did not interest me enough mentally to drive up the energy to get an erection.
I found this very strange because only 3 months ago, I had the craziest sex drive. I also noticed that it was hard for me to exercise. I would get tired very easily and it felt like my muscles and joints would get sore very quickly. I just attributed this to “getting old,” even though I was only 22.
I was constantly in a stupor and began to drink coffee (I never drank coffee because I was always a mild insomniac, hence the prescription sleeping pills). The coffee just caused me to feel stressed out but this time, I also had the brainfog.
Not only was I constantly feeling retarded in the brain, I also had the same anxiety feeling when I was in my “I think I’m going to die, I have too much adrenaline” stage.
This caused my body to twitch heavily. It was terrible.
After 2-3 weeks, I was really tired. So tired that I would get a really great night’s rest without sleeping pills. This was really huge for me because I was on sleeping pills for 2 years and have never slept without them.
I enjoyed the fact that I was able to get a good night’s rest but hated the fact that when I woke up, my mind still felt like it was asleep all day.
I started to get really depressed because I felt like crap and could not think competently. After 6 months of being on propecia, I decided to stop. I did not stop because of the side effects because I still did not realize all this crap was due to the pill. I stopped because it was too hard for me to regularly take a pill on a daily basis. That’s how retarded I felt.
Even though I was off the pill, my body continued to get worse. This was the start of my prostate problem stage.
About 1 month after I quit, it was really hard for me to urinate. In addition to my twitching and burning lower back, I notice that I was hesitating a lot when I had to urinate.
After awhile, a small amount of urine in my bladder made me feel like my bladder was going to explode. It was very hard for me to start urinating and it caused me great stress when I couldn’t go. It was even worse when someone was standing in the urinal next to me. The stress caused me to tense up and caused my twitching to flare up also. Given that my nerves were basically shot, it made me feel like total crap anytime I got stressed.
The urination problem got worse and worse and at one point I could no longer go. The only way I was urinating was by holding it in all day and I waited to go home until I sat in a hot bath tub.
This went on for about 2 weeks. It was so bad, especially when you are trying to work but your bladder feels like it’s going to explode, plus brainfog, combined with muscle twitches and the inability to handle any type of stress.
I got so desperate that I obtained some catheters to use rather than hold my urine all day. Although I am convinced that I caught some type of bacterial infection before the catheter use (when my back started to burn), I’m pretty sure the catheters made it worse.
I didn’t realize what the hell was going on with me until one day I noticed that it felt like I was sitting on a golf-ball. It hurt so bad to sit and I had this dull pain in my groin all day.
At one point, I was pissing out some milky urine.
I did some research and finally realized that I had prostatitis. I went to a general practioner before but he didn’t know what the hell was wrong with me. I just told him that I felt like crap and he ran a bunch of blood tests (no hormone profiles) and told me everything was ok.
I just changed jobs after stopping the propecia so I didn’t really have time to go to a doctor. I did more and more research on the internet and realized it was definitely prostatitis. I read about how people got better by draining their prostate (massaging the prostate), so I decided to give it a try.
My prostate was extremely swollen and I pushed it with my finger. It was very painful and within a few minutes I became very nauseous.
I decided I wasn’t going to do that again and just continued with the catheters.
The craziest part of all of this is that during my prostate episode, I also developed a thyroid problem. I had no idea what the hell was going on with me. All I knew was that I felt terrible all the time.
Then my eyes began to bulge out, really hard. Not only that I had the froggy voice too. I believe those were signs of hypothyroidism.
That was the lowest point of my entire life. I didn’t have the emotionally/finasteride charged depression as before but I constantly thought of suicide due to the pain.
For the next several MONTHS, I would go home right after work and basically sit on my couch and not move. It hurt between my legs and my brain felt like it was on fire. I stopped seeing people and stopped talking to anyone. Life sucked so much. I would go home and either spend time just sitting on my couch or sitting in a hot bathtub (to ease the prostate pain).
This is about 6 months after I had stopped taking propecia. Life sucked A LOT and I hated everything. I would not see people and was constantly miserable. Anytime I was stressed out, I would get these hot flashes. I would blush up and my face would burn for awhile, it was embarrassing and annoying.
I went to several urologists, all who seemed to have denied that propecia would cause the problem. I told them I had burning sensation in my right kidney and that it was really hard for me to urinate.
All they did was give me flomax. Made me feel even worse because flomax can cause sluggishness. Sluggishness + stress + etc = disaster.
I did “all” the tests. Cystoscopy, MRI, sonogram, dre, etc… and everything showed up “normal.” The doctor did say I showed some herpes antibodies but that just means I was exposed to it once in my life (may have been many years ago).
My uro didn’t even think it was prostatitis until I asked him about it and mentioned how similar my symptoms were. I basically had to diagnose myself to him.
He gave me antibiotics before he did a bacterial test. Even though the test came out negative, the antibiotics got rid of a huge amount of the burning sensation in my right kidney.
FYI: Apparently the 5 day culture that my doctor did may not detect certain aenerobic bacteria that die pretty quickly when exposed to the air. He didn’t send in the sample to the lab until the day after.
I was taking a drug called Levaquin (Floroquinone) which is extremely powerful and dangerous. I believe it can have neurotoxic effects so it did made me feel better in one aspect but worse in another.
I took 500mgs for 3 months. My symptoms got much better but I was definitely not 100%. I think the fact that I was not massaging my prostate properly with the antibiotics may have contributed to that. I was also taking some EDTA with the antibiotics (research EDTA on the internet if you are having prostate problems too). I still had a split urine stream though.
In fact, some people say that taking a strong general antibiotic like that without fully identifying the specific germ is not a good idea. It may not fully kill the germ and cause some future resistance.
During the whole time I was having prostate problems, I was taking a slew of natural supplements to try to heal my body as fast as possible. I noticed that the most positive effects came from supplements that help the body to rebalance. This includes ginseng, chlorella, antioxidants, pine bark, etc…
After 1 year of quitting, I can honestly say my brainfog is gone. My muscles twitch only in stressful situations and my brain occationally feels burned out when I get into a really stressful situation, but overall I have healed greatly.
Currently I am still battling my prostate problem but that too has gotten much better. I developed a really good technique on draining my prostate. It seems to get the cloggage out very well. The trick is that you need to constantly look for new clogged areas in the prostate and then focus there for a few days/weeks until that clog is gone.
My stream is beginning to get much stronger and the pain in my groin/above my pubic bone has gotten much more tolerable.
I am no longer on antibiotics but I still take chlorella and some allicin garlic, daily. The twitching is still there but it continues to shift daily (but with much less intensity everytime it switches. It’s almost unnoticeable). I see this as a sign of healing. Right now my knee twitches when stressed.
I tried taking some supplements that directly effect your hormones such as Nettle Root, DHEA, brocolli treatment, pregnelone and noticed that these made my symptoms worse. They would work for a few days at first but then would just make my body feel terrible. I think this was the fact that it required my body to re-adjust again to a sudden shift in hormones and my endocrine system was already burned out.
Like I said before, the supplements that promote balance were the ones that helped me the most.
The side effects continue to affect me and after everything is said and done, it will probably take 2 years out of my life but I am thankful that I went through this early in my life vs. when I had a family and a real career.
I never wish these side effects on anyone and understand the pain that many of you are going through now.
If you look up my messages on the hairlosstalk.com forums (pnb07670), you’ll see me first interested in propecia then try to go on a crusade about the side effects. It is sad that these people are so ignorant and believe that these supporters are sending people down a terrible and dark path.
Even though my case may sound extreme, I am not exaggerating and telling you exactly what I went through.
I took me awhile to write this because I always felt terrible but now I finally feel good enough to write my experience down.
I think I will be 100% cured in 6 months. I think time is the only way to really heal (while avoiding stress, of course).