Hi, I/we are very new to PTC as you read in my recent email. In a lot of the emails I've read, most patients are on Diamox. Are you? My daughter takes 500...
Hi Denise, New to PTC, but my daughter just found out she has it. She is 19. Regarding the tingling in the hands and legs and feet, she has found that...
Hi Everyone, Does anyone live in the Marin County California Bay area or San Francisco or Sonoma county? We have some great doctors here who seem to be very...
Hi, I was just reading about the id bracelet. Great idea. I want to get one for my daughter. Any suggestions as to what I should have it say? Thanks for...
my son is on diamox and has been for a year and a half , his other neurologist wanted him to be put on topamox but i didnt want him due to the fact i did...
Yes diamox affected my potassium big time, the norm is 3.6-5.1, mine was 2.4 and my physician called me personally at work and told me to leave to pick up a ...
i am on 500mg diamox 2x day. was on 3x day. plus i take prednisone for my lupus. both which can severely deplete ones potassium level. i was getting heart...
Hi! I live in Windsor, California, just passed Santa Rosa....60 miles north of San Francisco. I have been going to Stanford. I have seen a few doctors at...
It's been three years sence I've had my shunt done. I'm having daily pressure headaches again and some are bad. Like when I bend over or cough I feel like my...
Hi Shaylene, We are located in Novato. I know exactly where Windsor is!!!!! We are very new to PTC. I'm not even sure if I'm doing the forum correctly, but...
Hi, My daughter is having a really bad day! She has this awful headache and dizziness. She called the neuro and she told her to stop the topamax. That may...
Hello, I could never tolerate the side affects of the diamox at that dose - however, I do know of several in the group who have been on that dose - Hope she...
Jackie, I still want to get back to you about living close and sharing doctor information, but wanted to share my diamox imput. I am on the time release...
Hi Shaylene, I'm so glad your getting my emails!!!! Just knowing that there is someone close to us helps. My daughter is also a tough cookie, but yesterday...
Hi Denia, Thanks so much for the advise! She did use the heating pad and sat basically upright. Yesterday was the worst day I've see her in. When I look...
i live in the 805 area code by santa barbara and my doctor gave me darvset and that helped me a lot the the pain was to much or even atvain Jackie Whitaker...
Not a problem For me, the narcotics are about the only thing that will give me any relief - the down side of taking them long term is that you can experience...
Well, oh boy, my neuro-ophtha-what's-it has recommended that I get a shunt. I am, of course, not thrilled about this, but I treasure my eyesight (and my...
Jackie, With a disease like this, there has been NO WAY for me to survive it without pain medication! My mom is an abuser of pain meds for losing her leg 6...
Hi Denia, Thanks so much for your information. I ended up on the phone to the neuro yesterday and they prescribed Vicodin for Denielle. She took 1 pill and...
YEAH!! I am so glad the doctor was open to the use of pain medication - it truly is one of the few ways I can get any relief - I do have headaches every day...
Hi Denia, Can I/we join your group?! Denielle is pronounced like Dennis. She was named after her Dad, Dennis and was born on his birthday. Great birthday...
Hi everyone. I have made a website on IH for awareness and informational purposes that I would like some feedback from the experts and that would be all of...
Absolutely!! you can join my "group" - I am glad to hear Denielle feels well enough to be out and about - that has to be a relief on your part as well! I know...
Well, Mary i had a VP programmable shunt put in on Aug.10, 2006 and i was out of the hospital by the 12Th of that same month. i have been doing a lot better...
Well total brainless moment!! Guess it would help if I included the web site address, lol. It is www.ihawareness.com Thanks again, Angie I GoodSearch for...
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