I had my first appointment with DR Kula at the Chiari institute last week. he was amazing it felt so good to talk to a Dr that understood my symptoms and believed how much pain I am in. As of now I don't need surgery. I did find out that I have mild scoliosis and tethered cord. I have to see him again in six weeks. He started me on a very low dose of diamox to help with the headaches and sent me home with a script for pain meds. I wanted to know what any one else's experience has been on Diamox. I just took my first pill tonight. I'm just nervous about side effects. I remember when I took topomax it was pretty bad. Thanks Frances.
Diamox reduces the production of spinal fluid thus lowering the pressure in your head. What dose are you on? Drink plenty of water and diamox acts as a diuretic. Side effects that my daughter had were fatigue, tingling hands and feet, and soda tastes awful. They say it suppresses an appetite but I didn’t see that. Diamox worked wonders for her and she is now off it, but she was post surgery and was on it for fluid buildup, not pre op like you are. Best of luck!
Hi Jo,how are u? hows ya daughter? Ive had 2 dura graft repairs and still suffering headaches but not the ones I had before the repairs.The only thing that takes the headache away is the diamox but my NL said its impossible thats Im hypertensive after being hypotensive for so long.Could it be that it takes away the pressure from the graft maybe? and thats what helps,Im baffled with it all.Hope your girl is still doing really well.
Denise xx
Hi Denise! I was thinking about you! Alexa is doing well (she rode a roller coaster over the summer and just confessed now!!). Just finished the Diamox and ready to taper off the Topamax. As you know she had a large fluid buildup after surgery with all the yucky symptoms. As I understand it the medicines together lowered production of spinal fluid to allow graft to heal and fluid to decompress. So far so good. Glad to hear you are getting better. Xo