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 was diagnosed with IIH and papilledema 5 years ago. I'm a member of this forum but I forgot my old password. And the email I signed up for an account with I deleted some time ago :-/ So I had to create a new username. You can see my original post in this link: http://www.dailystrength.org/c/Psuedotumor-Cerebri/advice/20989479-diamox-side-effects/lastpage
I recently went to see my ophthalmologist and I was given some good and bad news. The bad news was that since the last time I saw her my left eye had become more swollen. The good news was that she didn't feel as though I needed a shunt anytime soon and that with weight loss she thinks my symptoms will dramatically decrease.
We talked about a few other things as well. Some questions she felt were to be better answered by the neurologist....However, my neurologist is pretty much incommunicado. I've only seen her once. (My first neurologist moved to another state) And during our initial meeting she she pretty much brushed off my questions and complaints.(Please note that I'm not a big complainer)
And as far as answering any phone calls etc. I can forget that too. I had an MRI earlier this year and the ER physician suggested I go over a few things with my neurologist. Well, she never got back with me. So I had no choice but to contact my GP instead.
At this point I've learned not to ask her any questions. I really want a new neurologist but due to a lot of reasons getting a new one would kind of be impossible atm.
Anyway, lately, my head has felt very heavy. So heavy that sometimes it's hard for me to sit up straight. When I can, I lay down or rest my chin on my hand and it takes the pressure off it. I know it sounds weird. It feels weird to me too. But nothing about IIH feels normal.
I think this heavy head feeling has something to do with IIH/ raised pressure. I'm wondering if any of you have experienced this before? or do you know what might be causing it? or what I can do to stop feeling this way?
Thanks in advance.
I recently went to see my ophthalmologist and I was given some good and bad news. The bad news was that since the last time I saw her my left eye had become more swollen. The good news was that she didn't feel as though I needed a shunt anytime soon and that with weight loss she thinks my symptoms will dramatically decrease.
We talked about a few other things as well. Some questions she felt were to be better answered by the neurologist....However, my neurologist is pretty much incommunicado. I've only seen her once. (My first neurologist moved to another state) And during our initial meeting she she pretty much brushed off my questions and complaints.(Please note that I'm not a big complainer)
And as far as answering any phone calls etc. I can forget that too. I had an MRI earlier this year and the ER physician suggested I go over a few things with my neurologist. Well, she never got back with me. So I had no choice but to contact my GP instead.
At this point I've learned not to ask her any questions. I really want a new neurologist but due to a lot of reasons getting a new one would kind of be impossible atm.
Anyway, lately, my head has felt very heavy. So heavy that sometimes it's hard for me to sit up straight. When I can, I lay down or rest my chin on my hand and it takes the pressure off it. I know it sounds weird. It feels weird to me too. But nothing about IIH feels normal.
I think this heavy head feeling has something to do with IIH/ raised pressure. I'm wondering if any of you have experienced this before? or do you know what might be causing it? or what I can do to stop feeling this way?
Thanks in advance.
Whey my symptoms are bad I feel like my head is under water. It is so heavy it is all I can do to keep my head up. Sometimes at work I just lay my head in my hands because I'm so tired of holding it up. I don't know how to make it stop, but just as soon as it starts I can hear popping in my ears like pressure is releasing and then it gets lighter.
This kind of makes me feel like I have a blockage and once it pushes through I'm good again. But, who knows? I know this doesn't help much but know you are not alone. Hugs
I had to start seeing a new neurologist (insurance change) and he looked at the report from my ophthalmologist and said that I had a little swelling return. He doubled my dose of diamox. It's been a few days, but still no relief yet. I've heard it takes a couple of weeks to take full effect when increasing the dosage.
I don't know what causes the heavy feeling and the doctors don't really answer my questions very well. My head has felt heavy on and off (mostly on) since diagnosis in 2009. When it's really bad, I get some comfy pillows to cuddle into while propped up on the couch (as laying flat will make it worse for me). I also have fioricet and that seems to numb it up so I can get some rest.
I'm not sure how much help any of this is. I hope you find some relief.
I am supposed to be taking 2,500mg of Diamoz every day however I literally couldn't stand being on that high of a dose. On some days I literally couldn't get out of the bed into the afternoon. So I made the decision to take 2,000mg. I'm still tired even w/ sleep mask but less so.
What do you all think? Have any of you been or could function on 2,500mg or 2,000mg of Diamox per day? I also take 25mg of Losortan too. And does Diamox just make you feel physically and mentally worn out too?