How much Diamox do you take? How long have you been taking it and have you noticed any side-effects? That’s exciting that our symptoms are very similar so we can maybe help eachother. I am sorry you are also going through this though. It has been the hardest time of my life. Everything you said about your symptoms was so me. It sounds like you have a full house also and it makes it so hard dealing with all this. How many children do you have? I have hope we will get better! Are you on any support groups? I am so happy I found this site. Thanks again for sharing.
I am taking 125 mg of Diamox 4 times a day. I think I started taking Diamox in August 2011. Side effects, well yes. My blood chemistry has been very acidic… we continue to play with the amount of bicarb I take, trying to find how much I need to take to stay balanced (labs currently pending right now) and kidney stones (had a CT last week and I have 3 stones in one kidney and 5 in the other, though I had a stone in each kidney prior to starting Diamox… but the rest are new.. yuck).
Yes, it is very hard being this sick and raising a family. I have 13 children, 10 still living at home (3 grown). I have learned how to run the house from my bed and the kids are great at helping me and each other! I feel bad though… wishing for my “old” self before I was so sick and was so organized and able to do so much! I’m a shadow of my former self it feels like.
I do not belong to any support groups per se, besides our church (they are a great support!). I have a couple of friends that are similar to me in their illnesses, so we support each other and our spouses.
I am also very blessed with a great doctor who reads all Dr. Diana’s research, then does his own, and is doing all he can to put it all together to treat me! When I found out about CCSVI, he did a lot of research and then actually came with me to where I had my CCSVI procedure (a 3 hour drive from where we live) and got to observe and talk to and pick the brain of my IR during my procedure. He is dedicated and very much wants to learn all he can. Plus, just having ONE doctor who doesn’t think everything is in your head goes a very long way.
I love this site and to finally find a place I feel I “belong” with all my illnesses, instead of just one of them. Sorry there are others that have the same constellation of illnesses (EDS, POTS, CCSVI, Mast Cell, etc.), but I sure appreciate knowing I’m not alone. And, then add Dr. Diana doing all she is doing to find us an explanation as to what the heck in going on in us AND treatments to help! Such a blessing!