I am on the same dosage. I have weakness and fatigue at times. Sometimes the weakness is localized like in my thighs. My main symptom has been tingling in my hands and feet. I do have some cognitive slowing, memory issues, etc but I don't know if these are from the medication or the disease itself. Your symptoms seem severe. I would speak with my neurologist ASAP. There may be other options like Topamax that work better for you. I couldn't tolerate Topamax but am able to tolerate Diamox so they may just need to try something new. Good luck.

Hi iluvmy3dogs,
I thought Topomax was mainly for the migraines. Does it work to help the pressure in the brain? My migraines aren't so bad right now, but I do have some vision issues.
Thank you so much for your response..
Blessings
Cathy

Topamax is used for many things including PTC. That was my original medicine but it made it very difficult for me to concentrate so I was switched to Diamox.

My neurologist told me they only treat with Diamox. That doesn't make sense in all the things I have read. I think I need to start looking for a new neurologist. I seen my primary care doctor today. She ordered some other tests trying to see if there is something else that is causing my symptoms. I sure hope they find the answer soon.
I am really glad that you got straightened out with the Diamox.
Thanks iluvmy3dogs!

Iluvmy3dogs I was wondering if you know where I can get a longer list of symptoms of the ptc? I only know that the migraines, some vision loss, maybe blurriness, ear ringing are the majority of the symptoms for it. I have very blurry vision in the evenings. My vision is blurry all throughout the day, but worse at night. Worse with time at the computer. It is not clear to me if I am seeing vision deficits. I hope I make sense. It is just not clear to me what the ptc can do.. I am just now really starting to learn more about it.
Thanks so much for your help. I am sorry if I sound so desperate..

You should visit the IHR (Intracranial Hypertension Foundation) http://ihrfoundation.org/. Go to What Is IH and choose Symptoms, under the 3 classic symptoms, Vision, Headaches, Pulse-Synchronized Tinnitus choose other symptoms.

You can also find out more about meds on the site and even ask questions for the drs on staff.

That website is a huge help! Thank you. I think I have the cognitive difficulties. Lately I keep saying the wrong words. I make people laugh but it is scary. Do you do that? I get the tingling in my feet. I call it electric feet. Ouch!
Take care!

They wanted to put me on Diamox, I refused. I take an over the counter diuretic and I drink a ton of water and changed my diet to all things that help with inflammation. After reading about the side effects I figured the pain I was already in wasn't as bad as what I'd have to deal with on that stuff. I also have a lumbar shunt. So far it's helped, not perfect, but manageable.

Hi Sunshine,
Is the otc diuretic lowering the csf pressure? I don't know about the shunt at all. I was told I am too high a risk cause of other medications and health issues to have any surgery. I am morbidly obese, so they want me to have gastric bypass to lose the weight first.
I am doing better now that I eat a medium size banana or bigger every day. I still am very fatigued just am functional again. My primary care doctor ran some bloodwork, so I am waiting to see the results to see if there is something else causing my problems. I am pretty sure it is the Diamox. They started after I started the Diamox.
Sunshine, I am so glad the shunt has helped you. I know that an answer will be found for me too. :) Thank you for responding. I really appreciate it. :)
Blessings,
Cathy

Glad you are getting some relief Cathy. I'm not sure if the pressure is lowered at this point. I'm only seeing my Dr's once a year (unless of course I'm in pain). I've based most of my milestones on how I feel. When I don't feel pain when I bend over, it's a good day :)

sunshine you don't see an eye doctor? Are your eyes bothering you?

cmpokey about cognitive difficulties, I have several. Mostly, forgetfulness and trouble typing words. I have to do a lot of double checking what I write because sometimes I'll just type the first letter of a short word like s for some or totally interpose letters like adn for and. It has affected my job because it slows down my functioning. With my forgetfulness, someone will ask me to do something and I totally forget to do it. I have trouble recalling names of people. None of these things were a problem for me before I got PTC.

Wow. I super impose letters too. I thought I just was getting worse at typing. I have been doing that since before the Diamox. I can go with three names before I reach the name of the person. That has worsened with the Diamox. It's terrible when you get your kids mixed up. I also switch words around. I will replace a word with a completely different word. It is so aggravating. I always thought bipolar medicines I take were causing the cognitive problems but now I wonder if it is the ptc. But I also can't do math problems I would do in my head before now. this has been for quite some time. I went to college and you would never know it. Now I wonder if that might be the ptc. I was afraid I have dementia. When I looked up dementia symptoms I meet several of them. Scary..
Thanks so much for your replies. It is nice to know I am not alone..

Here's a link to a research paper on cognitive functioning in pt's w/ PTC/IIH:

http://bmjopen.bmj.com/content/4/4/e004376.full

Thank you so much for that link! This is so helpful. Bad news if I am reading it right. It says that it might be permanent even with weight loss or something else. I have to lose weight. But I understand there are no guarantees that PTC will go away with weight loss. But yes this does explain a lot about some things. It would be nice to see them do more studies. It would sure help us..