I can help a little with this - my CO2 level, since being on diamox, has been between 17-19 most of the time and then dropping lower at others. Are they also checking potassium levels? If I remember through the brain fog, the lungs (CO2 levels) and the kidneys (potassium and other levels) work together to maintain a certain pH in your blood. If one gets off kilter then the other usually follows. If you do a search on acidosis through the message boards there is tons of information. As a side note, I said usually the potassium levels follow the CO2 levels because this isn't always the case - even when my CO2 levels were at the lowest my potassium levels were in the normal range. You may also want to check out the information about eating a high alkaline diet - most of the recommended foods are also high in potassium!

I'm not sure all what she tested. How do you check CO2 level? I've had them put that device on my finger and that's been fine? So maybe some bananas?

Amber

She got CO2 level through a blood test. 21 is pretty good. I get tired, out of breath, confused, and it gets blamed on acidosis from the Diamox, though I had those problems before I was ever on Diamox. So I'm guessing IH may have something to do with it (along with the tons of other stuff, like dizziness, digestion, pain, vision problems, etc).

I replied to your post last week on the same or similar topic and what I have to say isn't really much different but maybe I'll try to say it a different way.

your Diamox dose is not very high and it is not causing acidosis for the most part. I cannot imagine it is causing these symptoms you are worried about. I think your symptoms are from your underlying condition that is not being addressed. the question is: what is that?

we know you have IIH. but beyond the elevation in ICP which can cause all manner of crazy symptoms, I suspect from your description that you have an airway problem. I say this because it happened to me. and when I fixed the airway problem, the ICP problem got better. if you can't breathe, you will feel the way you do. if it comes on slowly, you won't recognize it for what it is, because you have gotten so used to breathing like that. if you are actually experiencing shortness of breath now, it is reaching a critical narrowing. and if there's not enough space in your neck for your airway, there definitely isn't for your jugular veins. your jugular veins need to have enough space in order for the pressure to be such that CSF will drain into them. your body is decompensating because there is not enough space in your neck. I don't believe there is another doc on the planet who has conceptualized this problem the way I have, so I wouldn't blame you for being skeptical. and if you talk to your doc about it like this they might react the same way because they've never thought about it this way. the reason things get worse over time is because as progesterone drops when we near perimenopause, airway tone decreases and the tongue starts collapsing back into the airway and onto the internal jugular veins.

some of what you describe could be orthostatic hypotension. I had this and it went away after I had jaw surgery, whether because of a reduction in my sleep apnea or related to a reduction in my IIH, I don't know. but I was on hydrocortisone to keep my BP stable and I have been able to wean off it for the first time in 3 years. my BP was never unstable in the doctor's office, so you would want to check it at home:
lie on your bed for 5 minutes, then check BP and pulse in that position. stand up and wait 3-5 minutes and check BP and pulse again. orthostasis is a rise in pulse of 20 or more and a drop in systolic BP of 10 or more. the pulse change alone is significant even if BP doesn't drop.

what I would recommend for you is to
1) get a sleep study using the most sensitive criteria, tell them you need to be tested for UARS. go to the best sleep lab you can, travel if necessary.
2) go to an ENT and ask for a fiberoptic scope of your airway, because it feels like your airway is closing up. ask him to compare views of you sitting and lying on your back, also jutting your jaw forwards.

you can test the theory by sticking your tongue as far out of your mouth as possible and see if it feels like you can breathe better like that. when you start having your symptoms, try doing this for a couple of minutes and see if you feel better.

oh, the funny thing that I forgot to mention. 3 years ago when I was really sick and I was trying to figure out a solution so that I would stop thinking about death all the time, I spoke a similar prayer: God, just throw me a bone!! within a few minutes, I found myself driving behind a car whose license plate read "JawDr" or something similar. so I went home and I googled Jaw doctor for my city. and the doctor I ended up seeing is the one who looked in my mouth and told me just how large my tongue was and how far it appeared to have fallen back in my throat. this led me to pursue this avenue even after I had a "negative" sleep study and other docs telling me there was nothing wrong with my airway. and then ultimately, it was the jaw surgery that saved my life. I was contemplating it even before I determined that it was the IIH in combination with the OSA that was making me so sick.
so here's your bone...... ;-)

Take the bone, the info she just provided has been some of the best advice I've seen on the net, and here is why.
1. Even before the stick your tongue out suggestion, Sopsmom told us of her radical jaw surgery, I since have been jutting my jaw forward when doing my breathing pratices for breath holding, it works
2. What better advice do you have at this point, other than pills? Oh and you have panic disorder, it will get better when it has adequate oxygen, and the right amount of csf.
3. Your losing the weight, you need the sleep to compliment the weight loss, and pills because without the deep sleep we need the glymphatics don't work!

that's actually a really good point Mary. I think that the glymphatic thing is really new and we don't know enough about it yet, but what if it's really important for maintaining ICP? so maybe just sleep deprivation itself leads to elevated ICP? do you have any papers that suggest this?

If you look around the net for studies done at Wash U, then by Maiken Nedergaard, M.D., who co-directs the URMCs Center for Translational Neuromedicine they figured it out.
Here is a link
http://www.nih.gov/news/health/oct2013/ninds-17.htm

Hey, maybe this is the need for coma in head injured patient's? Maybe the brain gers so damaged that the body needs coma in order to "go to work" 24/7 in order for it to be constantly bathed and cleaned? I remember the medical establishment's opinion for years that the brain is the only organ thats not self regenerating, but,,,,,,,,,in the right conditions?
Is it possible all along that our symptoms have been telling us to "Just go to sleep" in order to heal itself, but we fight the unknown, we want to go live and be conscious as apposed to letting our body do its job by making us sleep prolonged hours for months or years until its working properly? Maybe in order for IH'ers brains to be repaired and function the med establishment should make the protocol LP, sleepstudy, then sleeping pills in order to really treat the patient?

Gives a whole new meaning to my ghetto term
"Tired ass crack", ohhh I so crack myself up, muuuhhahaha.

well I've been on sleeping pills for the better part of the last 13 years and it didn't make me sleep much better or feel better til I had jaw surgery. I just had another sleep study and while my sleep apnea is not gone, I'm getting A LOT more deep sleep. like 43 minutes whereas before I got ZERO. so sleep stages probably have something to do with this; glymphatics probably work differently in the different stages.. and I'm not sure coma or medically induced coma is the same, more research would have to be done to figure out what the glymphatics do in those states. but if you are right it also suggests a different mechanism for how medically induced coma will allow survival of rabies infection. I think the current thought is that it reduces the metabolism of the brain in order to prevent the virus from being able to thrive in neural tissue. but maybe it is increasing clearance of virus via glymphatics?

Ohh good point, I love these convos, sometimes as I find out new stuff then have stuff to read when im bored to death, and literally sick of cleaning.

I read recently a saying: "a clean house is a sign of a wasted life"
I am now totally going with that.