My Story.

I was diagnosed with PTC when I was 19. I was having headaches that were beyond migraines and messed up vision. I weighed about 185 lbs and am 5'7. I was put on lasix and then diamox and give a spinal tap and told to lose weight. After about 3 months and only about 10 lbs weight loss, the blind spot in my vision cleared and my headaches went away. I had about 5 years of good remission and relapsed at age 24. This time was worse. The pain was beyond anything I can describe. If we had owned a gun I wouldn't be here right now. What was worse was now I had a son who was 4. I weighed about 180. Again with the spinal taps, and the diamox and this time I was told to eat no more than 2000 calories and walk 2 miles 5 times a week. Aka- lose weight. It took longer to recover this time, but I did. I lost 15 lbs and symptoms subsided. I am now 32, I have 2 kids, I weigh about 195 which is a record high for me. I am happy and besides being overweight I am healthy. I have had no sign of PTC symptoms returning. In hindsight both times I became sick with PTC I was on birthcontrol pills and birthcontrol pills give me other issues as well and since now I am overweight and not sick but using a copper IUD, I have to wonder if it was the birthcontrol that caused the PTC? I have been told that should I relapse into PTC again I will most likely be given a shunt. This is a surgery I would like to avoid at all cost, so I am currently trying to lower my weight again just as a safety precaution.
BrokeElectrix BrokeElectrix
26-30, F
1 Response Jul 9, 2010

Hmmm the copper iud seems like stroke of brilliance on your part. The fact that relieved any relapses back into PTC is a great thing. i think that all chemical drugs eventually have side effects. We are hearing more on the news each day and online and newspapers about drugs causing serious side effects and sometimes death. Making the drug that 'cures" more of a health hazard than the original problem. You are really paying attention to your symptoms and health though so that is very good. I'm glad you're taking good care of yourself. Do you think you will ever get your tubes tied? That might alleviate the whole threat of PTC ever returning? You are still young though and you might want more children. i think you're doing great though and i hope that shunt is never a part of your future. Thanks for sharing your experience and continued good health! xox

Hello, My name is Jamie. I have been dealing with this. I was also on diamox 1000mg. I am now med. free after starting a product 6 months ago. It changed my life. I am trying to have people sign up with me because my Neuro doc is thinking about giving this to patients to help them. I really want to see if it will work on others like me. I think this could be huge. Anyhow, I will give you my web page so you can look at it. At the very least you know that it is a possibility to get better. It is my goal with my company to work with PTC. It was the hardest thing I went through. I would love to share my story with you if you like. Anyhow if you choose to try it, I work with you over 90days, and let me tell you all my pain was gone after 3 weeks. Let me know if it sounds like something that you would like to try, because I would love to share it with my doc. We need to find a cure for this. Thanks for sharing your story. Jamie This is not a joke or a way to push a product. This changed my life and I will do what I can to help others. I can even send you a sample.