The NL prescribed me Diamox 250 mg starting with half a pill and slowly increase to 3. My mother takes this medication for pseudo tumor cerebri and she said it causes no side effect other than a crazy head rush about 30 minutes after she takes it that just last a few seconds. I of course have all the side effects, pins and needles in my fingers and feet, increased dizziness, loss of appetite, increased nausea and vomiting and tachycardia.
The reason's for treatment do not apply to me, the doctor said he wanted to see if it would help my headaches. And to my excitement I woke up this morning on day 4 of the medication WITHOUT a headache, but it was only short lived -_-
So anyone who was diagnosed with CM1 with Sryingomyelia and EDS, have your doctors used this medication in your treatment? I'm trying to prove to the doctor I am willing to listen to him but I don't see what this is going to prove.
Maybe he is thinking that you may have increased cranial pressure- sometimes diamox helps with that. ???
He wants me to take it for a month. I got to say today is the first time in months that my headache remained at a pain level of 3 out of 10 in a long time. But today a doctor I work with walked by me and did a double take and said "what the hell is wrong with your eye?!?!" My right eye was throbbing and my vision was blurry all day and when I looked at it it was blood red and my pupil was huge. I'm going to keep watching it but my headaches seem to be slowly dwindling down. My brain didn't really show evidence of high intracranial pressure, but at the exam he mumbled something about dimpling on my left optic nerve. I haven't noticed any drastic changes in my vision unless I have a migraine. My mother lost her vision due to high intracranial pressure so I've been on the look out for changes in my vision
Rosie- I think you should go to the ER, or seek some immediate help that could be an emergency. What did that doc who noticed it say? Did he check you out? I’m a bit worried.
When I told him I started Diamox he told me to call the doctor right away, but I couldn't get through to anyone. So he said he would look at it today. Me and him both have experience with the ER and we know they are useless unless you are dying or severely injured. I think in this situation they would be useless so I'll call my NL again today.
I had 2 miscarriages possibly 3, the second time I was a week late and I never did a pregnancy test and never went to a doctor to confirm... I didn't want to know. the first time and possible second one I let happen on their own the third one the doctor opted for a d&c because of my history and it showed the fetus only had 11 chromosomes. but I went to a new obgyn for birth control and she refused to put me on anything but a iud with my hx of miscarriages, migraines with aura and I smoke. she gave me a script for those blood tests but I was so pissed at her I never went. I'll check on it, but I take so much aspirin for the headaches I think my blood is more like water at this point. And the medicine your thinking of is klor-con, its a potassium pill, I just opted to eat more bananas.
haha the lab I use must hate me... everyone has been running soo many tests I racked up $200 worth of copays in just 2 months.
I'm on lo-loestrin right now to try to control my irregular bleeding that's causing low grade anemia, I'm trying to avoid a D&C because the last one left me in really bad shape for a few months.
I'll set up an appointment with my pcp who works with her husband who happens to be a NL, I'll fill her in on everything that's going on and hopefully she will understand what I'm dealing with.
And I watched all those hour long videos, the orthodox ophthalmologist was my favorite!