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...
ok all so im not one much but its not that i am pain free its more that i am busy every day but ok so here is the deal i have been on 4,000mg of diamox for about 5 weeks not and it looks like it will be another 3 months too. my next neuro appointment is 3 months out. has anyone ever been on such high of a dose for so long? what can happen? fyi: my neuro does not do any blood draws on me and hasnt ever. also still ahving a few headaches here and there
Do you think its helping? You say your hds are fewer and with that dose they would want to be.
Why does your neuro not take bloods? Its so strange and I think, irresponsible. You need to at least monitor your potassium levels when on such high doses of Diamox. As well as all the rest.
I get my local dr to do my bloods, every 3 months when on Diamox. He doesn't "like "to either, just what the hell is that all about?, so I lie thru my teeth! I say my neuro needs it. I haven't got caught yet, doing something they should be doing in the first place.
All I can add is to drink a LOT of water. diamox can cause kidney stones, for me its kidney infections. Drinking water will at least balance things in your favor.
Im sorry you had to come back to us, still sick. We missed you about the place! Don't be a stranger, ok? Cath
A neuro does what a neuro does. Your regular doctor will take blood and should do so every three weeks with that dosage.
Eat PLENTY of bananas, drink LOTS of juice and try to get used to the taste of coconut water---all of those will help with potassium.
Also, you should be hydrating constantly. If you are worried about the dose, call the neuro and ask. He should either, A. Call you back or B. Have the nurses tell you when he takes calls. They are supposed to do this for you.
There is a certain name for the blood test you have to get, I am sure that someone on here knows it, but it tests your kidneys (you want to give your regular doctor urine), blood levels and whatever else you need to monitor.
You should never be left to wonder for three months. Call them. It will make you feel much better. You have a right to do this.
My neuro took monthly blood samples at first. Then after I developed metabolic acidosis, then he tested it every week. Then once a month when it looked like things were under control. The acidosis is back, so I don't know what he'll do now.
Your doc should be doing blood tests at least once a month at first, to make sure the Diamox isn't doing anything evil to your body. To see the possible side effects, you can visit the package insert at the FDA's Daily Med website:
http://dailymed.nlm.nih.gov/dailymed/lookup.cfm?setid=bcc2d379-83d6-4b10-ba7f-729ae87fe57e
Your headaches might be IIH headaches, or another kind of headache. Is your neuro a headache specialist? That helps. I have migraines on top of my IIH headaches. After some training I can tell the difference now. For me....
- Migraines, one side with a feeling like a cleaver into my skull. Imitrex or painkillers usually help.
- IIH, pressure headache, with a feeling that my eyes are about to pop out. Nothing helps the pain except reclining with my head higher than my heart and my head and neck packed in ice helps it go away quicker. As in, under 3 days instead of lasting a week or more. Oh, and time. Time helps. What goes up (pressure) eventually comes down at least a little for me. Lots of fluxuation.
Ask your neuro for a blood test right away. If he won't do it, ask your primary care physician. In fact, it might be faster to ask you PCP than to ask your neuro. Your PCP can see if something is off or amiss. She can look at the package insert for adverse reactions to see what she should test for, but I'm guessing she'll do a full blood panel and perhaps a urine test, too.
Do it soon, okay?
The big finding in my blood tests was metabolic acidosis. It was a side effect of the Diamox. Acidosis is dangerous, especially if potassium levels are too low. I was in the hospital for 3 days with it.
http://en.wikipedia.org/wiki/Metabolic_acidosis
I'm in acidosis again, but my potassium levels are okay, so I think no hospital this time. Yaaaay! Just nasty bicarb soda to drink. Ick.
Anyway, get checked out. Some side effects of diamox are dangerous, but if caught soon enough, no worries.
I am on 2000mg and I have to take potassium supplements. Just like everyone else said: get that blood taken. You will not be able to keep up with the potassium with food alone, I don't think. I tried. I failed. I didn't know what was wrong with me because no one was taking my blood either and I didn't think to ask (anything to minimize my time in medical situations, I guess...). Anyway, after 10 months on 2000mg, I was crashing (low blood pressure, dizziness, EXHAUSTION, etc) by about lunchtime (12 noon). I blamed PTC and so did my family, friends and coworkers - we thought that was the disease and the diamox. Then I talked to my neuro about it - first words out of her mouth, "Well, you are taking your potassium, right?"
"Um... No." she flipped out, wrote me a prescription, and I kid you not, my coworkers asked me the next day what the heck happened to me. They wanted to know why I was so "hyper". I WAS FINALLY AWAKE!!
Drink, drink, drink and get your potassium!
All the Best,
Nicole :)