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...
I have no idea what causes this with me. I have had every Cardiac / Pulmonary test one can have and everything is fine.
I get up to walk to the bathroom and I get so short of breath. I do have POTS and sometimes I can stand and walk for a while and my breathing is not too bad.
I try and take my kids to the mall and if I walk for too long, I start to sweat like I just ran 20 miles. It comes mostly from my head, but then to my upper body. It is not a Normal Sweat. Medical term (Hyperhydrosis).
Sometimes, if I walk to my mailbox, I come back in the house and I have to sit and I am so out of breath, it looks like I need an ambulance. It can take 10-15 min. to get my breath back and I lay down and put my feet up like I am trying to get blood flow back up to my head. It is the craziest thing.
When I am out of breath like this, my heart is Pounding in my chest. If I feel my Carotid pulse, it is so strong in my neck.
My shunt will be finished and opened on next Wednesday. My Dr. thinks so many of my symptoms will be better after this. I am praying that this is true. With my ICP near 50, it is easy to imagine so many Nerves, Cranial Nerves, Spinal Nerves, etc. to be compressed or squashed right now.
I am surprised that the general literature does not have that symptoms listed in the Database that was created here: https://docs.google.com/spreadsheets/d/tOuNNwA8DbnKopsYgbpAgRg/htmlview?pli=1
I have so many symptoms on this list as do many of you. I know I need to be patient for my shunt to be opened and I am trying to be. I just get so scared with some of these symptoms that make you feel like you are dying.
I get up to walk to the bathroom and I get so short of breath. I do have POTS and sometimes I can stand and walk for a while and my breathing is not too bad.
I try and take my kids to the mall and if I walk for too long, I start to sweat like I just ran 20 miles. It comes mostly from my head, but then to my upper body. It is not a Normal Sweat. Medical term (Hyperhydrosis).
Sometimes, if I walk to my mailbox, I come back in the house and I have to sit and I am so out of breath, it looks like I need an ambulance. It can take 10-15 min. to get my breath back and I lay down and put my feet up like I am trying to get blood flow back up to my head. It is the craziest thing.
When I am out of breath like this, my heart is Pounding in my chest. If I feel my Carotid pulse, it is so strong in my neck.
My shunt will be finished and opened on next Wednesday. My Dr. thinks so many of my symptoms will be better after this. I am praying that this is true. With my ICP near 50, it is easy to imagine so many Nerves, Cranial Nerves, Spinal Nerves, etc. to be compressed or squashed right now.
I am surprised that the general literature does not have that symptoms listed in the Database that was created here: https://docs.google.com/spreadsheets/d/tOuNNwA8DbnKopsYgbpAgRg/htmlview?pli=1
I have so many symptoms on this list as do many of you. I know I need to be patient for my shunt to be opened and I am trying to be. I just get so scared with some of these symptoms that make you feel like you are dying.
I'm Taleema, I'm a nurse in Primary Care, and got sick the fall of 2013.
Yep! Often experience shortness of breath (nothing like some of the COPDers that we see in our clinics) but definitely have to catch my breath and can't speak while walking (5 min). Will get sweaty & out of breath as you describe and get heart palpitations and PCVs from walking up my stairs from the basement to main floor. I was reading somewhere just the other day that POTS can affect a person's daily functioning in a very similar way to COPD and CHF--sorry can't recall my source.
I have heard of similar symptoms with Traumatic Brain Injury and Post Concussion Syndrome. Interesting that there must be a link between the swelling/pressure and the parasympathetic pathways. Makes me think that's why we get similar symptoms too.
Just got my Holter monitor off today...we'll see what they say... been having increasing episodes of vasovagal irregular heart rhythms that comes with everything, sweating, pale skin, nausea, etc. sometimes with activity, sometimes just sitting on the couch.
I found an article today where dogs were studied after increasing their ICP. They had 160% increase in Pulmonary Artery Pressures, so I guess it just depends on how one is affected probably having to do where the high pressure areas are affecting the brain tissue itself and I'm sure the Cranial and Spinal nerves.
Autonomic Dysfunction by itself is something scary, but when we add in the other stuff, it can be insane. My symptoms began in 2008 so I've had more time to get worse. It took forever to figure out it was PTC / IIH.
How high are your pressures if you don't mind me asking ? My Dr. said that b/c mine is so high, this is why I didn't get relief from Diamox or Topamax. I.e. going from a pressure of 50 to 40 isn't going to be too noticeable.
I'll know this week when they open my shunt finally how much better I can get. My surgical date is 1/21, so I'll know soon enough. Your out of breath / sweating sounds alot like mine.
I had an ANSAR test done a few years ago, which was developed by Harvard and M.I.T. It measures the Autonomic Nervous system. I had like almost No Parasympathetic activity and was dominated by severe sympathetic activity. It was like being in an Anxiety attack 24/7. Beta Blockers help a little bit, but there will be nothing like lowering the pressure I'm pretty sure.
Would love to compare notes with you further more re: the Autonomic Dysfunction. Please message me when you have time if your interested in doing so.