Hello everyone, this is the very first forum or any type of support group that I have joined. It is so amazing to me to read everyone's story because it is so similar to mine and I haven't talked to anyone with PTC before. I was diagnosed with PTC back in 2003, at that time I was 220 pounds and only 5'1 so quite overweight, I was also on Birth control pills. One day I brought my fiance (now ex) dinner at his job (he worked in an envelope factory and I kept staring at the machine just moving super fast and everything went into double vision so I adverted eyes from the machines shook my head, blinked a few times, and it was gone but after the first time it happened, the very next time my vision went double it didn't go away. On top of the double vision I had the blinding migraines, I was sick to my stomach, throwing up, ears ringing, my heartbeat was pulsating in my head like a constant pounding, my left eye bulged from the socket and turned all the way in to my nose! I went to doctor after doctor, hospital after hospital, eye doctor after eye doctor months went by with no answers or any type of relief! I finally went to an eye doctor that did a nerve test in my eyes and it was only then did he discover that there was pressure on my optical nerves and he told me to get to the hospital right away tell them I have fluid on my brain and for them to do a spinal tap. Of course not one single doctor could tap me, it took me going to philly being admitted and given a tap under the flora scope that they were able to tap me. After the tap I was put on Diamox which I responded very well to and the next day did I FINALLY start to get some relief, my vision started to come back, and my favorite part of course was the dramatic weight loss....I literally peed out 50 pounds in the 1st month alone and over the next 2 years I went from 220 down to 130!
Since then life has been super rocky dealing with this especially cause I have some major spine problems and doctors are very limited to what they can do to help me and as far as having the surgery to fuse my spine pfffft doctors won't touch me. Since all of this is happened I suffer from severe depression and anxiety, I wound up getting addicted to pain meds which then turned into a heroin addiction which I have been clean for 2 years as of may 17th ( i go to a methadone clinic ) and unfortunately methadone makes you gain a ton of weight so with having gained all of the weight back I am having more problems with the PTC yet again. I have probably had at least 10-20 taps in 10 years so the docs say that isn't enough for a shunt but I kinda wish they would just put one in.
Sorry this is so long and kind of all over the place but I was trying to cram alot in without making it too long.