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...
First of all, I'm sorry for not posting much lately. I have been super busy with work and my 3 boys (4 if you count my hubby. haha).
Wanted to get some advice from you guys. I've been on Diamox for 4 months now and I'm doing pretty well. My paps are gone, no headaches (rarely had them anyway), no neck pain. So, clearly the Diamox is working for me and I'm very thankful. However, I do still have the whooshing in my ears daily. To me that indicates that my pressure is still high even though my vision is not currently in danger and I'm not in pain. Should I talk to my neuro about increasing my dosage to 1500mg?
I really don't want to and here's why. I've managed to make it through the worst part of the side effects - energy level is pretty good -and it took a long time. However, the one thing the diamox has done is give me a horrible flare up of GERD which is still not under control. I am on medication for the acid reflux but I'm still having problems. I am afraid that if I up my dosage I will start feeling like a zombie again and that my digestive issues will get even worse.
Should I just try to live with the ear whooshing since my other IIH symptoms are under control? What would you do?
Wanted to get some advice from you guys. I've been on Diamox for 4 months now and I'm doing pretty well. My paps are gone, no headaches (rarely had them anyway), no neck pain. So, clearly the Diamox is working for me and I'm very thankful. However, I do still have the whooshing in my ears daily. To me that indicates that my pressure is still high even though my vision is not currently in danger and I'm not in pain. Should I talk to my neuro about increasing my dosage to 1500mg?
I really don't want to and here's why. I've managed to make it through the worst part of the side effects - energy level is pretty good -and it took a long time. However, the one thing the diamox has done is give me a horrible flare up of GERD which is still not under control. I am on medication for the acid reflux but I'm still having problems. I am afraid that if I up my dosage I will start feeling like a zombie again and that my digestive issues will get even worse.
Should I just try to live with the ear whooshing since my other IIH symptoms are under control? What would you do?
I, would learn to live with the whooshing, I am in fact. You have tamed the devils drug, and to up it now, because of the swooshing sounds a bit drastic to me.
I know the swooshing is suppose to be a sign of increased pressure but do we know that for sure? I would think the call is on how your eyes are doing.
Have them regularly tested, every 3-4 months. Keep on top of it.
The swooshing is a symptom if you like but the real problem is if the paps come back.
Are you still seeing your neuro? What do they advise?
I am off diamox since March and the swooshing is back since Aug. I havnt done anything yet about it. But I am seeing my neuro in two weeks, and I will make the decision to go back on the meds based on my eye exam.
Once again, great to hear all your good news! Cath
The past two weeks almost all the side effects of diamox have gone away which is so great! i feel good on that front. but the nagging feeling that my pressure is also up as soon as i get used to the diamox isn't sitting with me well. I almost feel like it's an evil trick.
Though this week i'm on my period and from what i read hear i gather some women have higher pressure when they are on theres so i'm going to wait to see how i feel and just try to be very aware of my eyes.
increased Diamox or what! Worried about what this drug does to kidneys and also the fact that it suppresses bone marrow.
before i switched up to 1500mg a day my NO said she would like another LP with me on the diamox to see where i'm at since i'm now getting headaches( tenderhead) and my body is feeling like my pressure is high even though my eyes look good.
I haven't had it done yet cus as much as i hate to have another LP part of me wanted to make sure i needed it to see where my pressure was. but the fact the wooshing is back it's making me rethink getting that 2nd lp just to see where im' at.