Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Hi everyone,
I know I'm not around much, but between my kiddo and feeling terrible it's so hard to get here as often as I'd like.
I do have a question though...
I have been on Diamoc since late 3/12 and am finally starting to feel human again on it. I still have pretty bad headaches, but my vision and PAPS are improving. I saw my endocrinologist for some bloodwork to see if the pressure in my pituitary gland (partially empty sella turcica) was affecting my hormones etc.
She ran an electrolytes panel, and I noticed that my CO2 levels is falling again.
Past CO2 =
Baseline march/2012 -- 24
April-- 20
End of April -- 18
Beg. May-- 16
End of may-- 14
The 14 is the most current taken on 5/22/12.
I'm not really having any respite resp. symptoms of low CO2, except that I do find my self taking very deep breaths (almost sighs) more often in the last week or two.
I do have tingling in my hands and feet, lightheadedness, headaches...but those could easily be explained by the PTC or the diamox.
I guess my question is, when should I worry about these levels? The docs don't seem to be concerned. Can I exercise etc with co2 levels that low?
I was just diagnosed with PTC (IIH) in March, so I am still very new to all of this. Not sure what to worry about and what to leave in the doctor's hands. I want to be a good advocate for myself, but it's hard when you don't know much about the illness yet.
Thank you all so much for any help or insights you can give me!
Beth
I know I'm not around much, but between my kiddo and feeling terrible it's so hard to get here as often as I'd like.
I do have a question though...
I have been on Diamoc since late 3/12 and am finally starting to feel human again on it. I still have pretty bad headaches, but my vision and PAPS are improving. I saw my endocrinologist for some bloodwork to see if the pressure in my pituitary gland (partially empty sella turcica) was affecting my hormones etc.
She ran an electrolytes panel, and I noticed that my CO2 levels is falling again.
Past CO2 =
Baseline march/2012 -- 24
April-- 20
End of April -- 18
Beg. May-- 16
End of may-- 14
The 14 is the most current taken on 5/22/12.
I'm not really having any respite resp. symptoms of low CO2, except that I do find my self taking very deep breaths (almost sighs) more often in the last week or two.
I do have tingling in my hands and feet, lightheadedness, headaches...but those could easily be explained by the PTC or the diamox.
I guess my question is, when should I worry about these levels? The docs don't seem to be concerned. Can I exercise etc with co2 levels that low?
I was just diagnosed with PTC (IIH) in March, so I am still very new to all of this. Not sure what to worry about and what to leave in the doctor's hands. I want to be a good advocate for myself, but it's hard when you don't know much about the illness yet.
Thank you all so much for any help or insights you can give me!
Beth
The only other abnormal lab was
Chloride-- 110
K was 3.5 (which according to the lab is the lowest value of normal.)
All other electrolytes were normal.
If it helps, my diamox dose is 1725mg/day.
If there are any other labs you'd like numbers for, please feel free to ask.
Thanks again for replying.
--beth
Please read my post today - Proximal Renal Tubular Acidosis.
It sounds like you are in that condition. TALK TO YOUR DOC ASAP. Give them a call in the morning.
I did email them this morning, so I'm not sure when they will get back to me. I see them on 6/25, is that too long to wait if I am not having any respitory distress?
I will read your post once I get my kiddo down for bed. Thanks so much for your advice and your time!
Beth