I had gotten into it with them about increasing meds because when the med student came by he had asked me straight out what I wanted. I told him - I wanted the diamox increased. With IIH I make too much CSF. The diamox will ensure that I make LESS CSF. Therefore INCREASE my diamox so I make less CSF. They were concerned because the known side effect of diamox is that it causes metabolic acidosis. The bad thing about this is that it can cause your organs to shut down. Ya it's bad. So they are very leery when it comes to increasing a medication that will cause metabolic acidosis.
With me I am susceptible to metabolic acidosis when it comes to diamox. We know this because I went towards that in November. that's why I was in the hospital for quite a while because we had to titrrate the medication for quite a while (and also work around the doctors shit) - so I was told no - to which I did not take very well because I knew that my VBG (venous blood gas - it measures metabolic acidosis) was stable and that I was only slightly acidotic but that with this med I was/am always slightly acidotic and therefore a trial of increasing the medication should be tried because if not then my pressure will not lower and therefore my pain will remain increased and I will not be able to leave! So the med student left and an hour later the resident came and I said the same thing and he said that he wasn't sure that the answer will be any different but that he would take this information to the neuro team. He was like ya, this is a zebra condition, it's not like we get this condition everyday, we don't know how to treat it easily, it takes time and patience. Ya I know it is, I have not just one zebra conditions, I have two. It sucks!!!
The next day the med student came in and gave me the good news that I got my increase. Then the big guns came in and told me that since I got the increase I could leave that day or I could stay that day or I could leave the next day after I have my blood drawn. I thought it was best if I had my blood drawn after I had my VBG after I had the increase. Additionally, the medication is fast acting so the VBG would be accurate so when it came back sshowing that it was the same as before I was good to go!
So I flew the coop. Hubby and I went out for lunch and then we went to my primary care physician office to make an appt - I got in the next day because I had been hospitalized otherwise it takes a while to get in. When I did see him he wasn't exactly shocked/surprised. We made a plan to have my VBG checked next wednesday to ensure that it hasn't changed. If it's still stable then we'll increase the diamox and I'll talk to him about decreasing the topamax. I'm finding the topamax is making me foggy - other ppl say that this is common. I'm still finding that my pressure is a bit high and an increase in the diamox will help bring it down. But we shall see. Either way, I love my primary doc!