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 have been evaluated by a couple of ENTs and been told everything is perfectly normal. However I have a hard time believeing that everything is normal because I remember a time before I had these symptoms. So I want to know if anyone else suffers from any of the symptoms which I have, I have war pIn, especially when speaking on the phone, I often feel a pressure buildup in my head which then fills up my ears and then i get this high pitched ringing in my ears. I have pulsating tinnitus when I lay down, and occasionally when I am sitting but that has been better since going on the Lasix.
My Dr informs me the fullness and tinnitus is not IIH or the acetazolamide (despite tinnitus being on the side-effects list - go figure). As sophiasmom06 points out, I've (luckily) read a lot on here of others having similar symptoms and to me, it seems way too coincidental for them NOT to be related!
First off, most IIH patients suffer with some degree of ear problems .Take for example the pulsing sound of your heartbeat that you can hear when you lay down. (I don’t agree with calling it “ tinnitus “ as that is a different medical problem. ).
I suffer from earaches.The pain that is. There is nothing medically wrong with my ears.But I know when my pressure is high it can bring this pain on.
I also suffer from blocked nose and ears. Have had so many tests done to be told it’s allergies. It’s not. My eyes are nor effected nor does my nose run as would do if I suffered allergies.
I came off Diomax yrs ago and will never take it again. It was poison to me.
But over the yrs the “ whossing” sound disappeared,with no meds. Hate to say this but I actually missed it!
It’s been coming back of late but we have been experiencing a higher than normal amount of storms here. That upsets my ears. A lot of pain..
Another strange one, do you have mercury fillings? You might need to have a look into that.
What I do know after having IIH for 12 yrs, it can give you any manner of a “symptom “.
I know that a member, Seahorse, from yrs ago put together a brilliant symptom log. We all entered our own personal problems. It was a great support and aid to check if what you were experiencing was from IIH.
This new site confuses me! But I’m sure it’s still here.
Hope I helped a little bit. If I can help with anything else just ask. I’ve been dealing with this a long time and I’m still standing! Best wishes,Cath.
here it is:
https://docs.google.com/spreadsheets/d/1fYUdDUeaNfyJ1PkrEM7qy-eYty9xgrHZhminZ1OT84Y/edit#gid=1580702460
always good to repost it for new members to see.