My Story from Indiana: Peyronie's Disease, Tinnitus, Hyperacusis, Visual Snow

My name is Michael. I'm 60 years old and I am new to the forum. I have been a longtime lurker for over a year and decide now it was time to get more involved. My Story starts with me getting Peyronie's disease in March of 2020. This disease only affects men and I won't go into any of the details for decency sake. I felt hopeless with this awful diagnosis and lost all hope for living. My Peyronie's doctor prescribed a couple different medications. One was daily Cialis and the other was Pentoxifylline. I was also prescribed traction and VED therapy to prevent shrinking and deformities. I was also on a lot of Celebrex, NSAIDs and some Norco for breakthrough pain from severe back pain. After a few months with this regimen my Peyronie's was slowing down and my pain was subsiding.

Then on July 31, 2020 my nightmare began. Severe ringing in both ears with a higher pitch in the right one and a lower tone in the left. I quickly started researching my drugs and I stopped everything cold turkey.

The only thing I continued taking was my hormone injections. I have been on full Testosterone replacement for the past 17 years.

I then got an appointment with the local ENT who said yes I had high frequency loss and wasn't really concerned about my tinnitus. He said that maybe the drugs were ototoxic but wouldn't agree on it being the cause. He prescribed me a course of Prednisone and tried to sell me an operation for my deviated septum. I was scared that I may have a brain tumor and he said that for my symptoms it was very unlikely that I had one. I had equal symptoms in both ears, not just one.

I had also developed hyperacusis in both ears - more in my right. Simple sounds were very hurtful and frightening for me. I also had developed daily headaches. Sometimes they turned into a migraine and other times just a mild ache. My days were filled with tears and sadness knowing that my "normal" life was over forever.

I stopped teaching elementary school and haven't even been interested in my art. I have thought several times about how I could end my suffering, but being a Christian prevents me from doing so. My wife and my 4 children have been a big encouragement on those days I could barely get out of bed. I have found solace in my upstairs bedroom with a TV and quiet surroundings away from everyone. I have also enjoyed reading the forum's positive threads which have had me in tears many times. There is comfort in finding someone who has been through a similar situation. It shows you that there is hope! I did try and not read the doom and gloom postings - some were very scary!

So after several doctor visits with no hope I found an ENT-otolaryngologist that was only 1 1/2 hour drive away. He was quiet and kind and listened to everything I had to say. He also thought an MRI scan was unnecessary. He felt that the tinnitus for whatever reason was aggravated from my migraines/headaches. He believes in preventative measures with supplements and avoiding stress etc. Then he also offers the traditional meds which I have not tried as of yet. I have had some setbacks with loud noises from unexpected places and this has set me back. It is like taking 3 steps forward and 2 steps back. I have recently noticed a slight touch of what I would call visual snow. It is not the classic symptom but rather a slight shimmering in my peripheral vision when focusing on something far away. It comes and goes and is at it's worst with headaches and severe tiredness from online reading. This has also added to my despair, but I still try to be positive as this helps.

Today I have an appointment for my eye doctor just to make sure that there isn't anything serious going on with my eyes. Five months ago my eye checkup was great. My tinnitus is very disturbing at times and then does calm down. My hyperacusis only seems to act up when I am experiencing a migraine. The visual snow seems worse in the morning and comes and goes also with migraines. During all of this I have visited Dr. Google several times and have diagnosed myself with so many rare diseases. I still worry at times about a rare brain tumor. My wife wants to take away my computer.

I am still dealing with Peyronie's but am in the stable phase with continued therapy. I only take it one day at a time and exercise/walk every day. I eat healthy and enjoy the little things each day. I am also so thankful for this awesome forum as it has offered me so much hope to continue on when I could not! When someone posts something positive you never know who is actually reading it. I want to thank everyone!!

Mike J

 

Thanks for sharing your story @Mike J.

Be strong, and keep taking on day at a time while enjoying the little things. It's so important to embrace the positives if you are able to.

Even though we feel to quit some days, have faith in what may come. You will get better with time.

 

Thanks for your kind words. When I have a good day it is easy to find the things to be grateful for. When it is not such a great day I have to tell myself it will get better and remember the better day I had. The healing process seems like running in a marathon.