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...
Hey everyone.. I'm Greg.. Just 46 years old and diagnosed recently with PTC. I have a few questions for everyone here re: Symptoms. I have seen in the Medical literature mostly about headaches, blurred vision, nausea, and ringing in the ears.
I certainly have all of those things, but I also have so many other symptoms. I have made many observations about my illness that I want to see how many others can relate. I was misdiagnosed with many things over the years, but a recent LP revealed my pressure at 40mm H2O. This confirmed the diagnosis. I failed medications and now going for a shunt in a few day. I am aware of the complications of shunts, but I have to get some relief. I can't do much like I am.
So, I wanted to ask how many of you experience similar as to what I do. I have noticed that I am worse in the mornings and the longer I lay flat while sleeping, the worst I am when I get up. If I can do only 4-5 hours of sleep, I'm only 1/2 as bad as if I sleep for 8 or 9 hours during the night.
When I get up, I walk like a penguin to the bathroom as I have so much pain and very stiff in my leg muscles and ankles. I quickly go to my office chair to sit and I feel like I'm having a stroke. My speech is slurred. I am very weak. I have numbness and tingling in my right arm, like an Ulnar nerve compression, but it is not. I feel pain down my spine that makes me feel short of breath. I also have severe pain/pressure in the back of my head just below the two notches at the base of the skull. My right ear is constantly ringing and goes back and forth between a constant ringing and a pulsatile tinnitus. My right eye feels swollen right out of bed and opens better as the day goes on. If I exert myself, my heart rate goes nuts (POTS) but my blood pressure is always ok. I have anxiety from hell, but it's not a worry anxiety. It comes with high pressure. Also, my emotions will run rampid at time. I feel like I'm gonna cry for no reason and it is def. a symptom instead of my having bad sad thoughts.
I have such bad brain fog all day long. I feel brain damaged, but I know that I am not. My MRI's are all normal. I did find I had Empty Sella and now on Testosterone treatment for this. I hope that the shunt will allow many of these symptoms to revers.
I feel like I have this so much worse than most of you here from what I read, but then again, some are better at putting things into words than others, so not really sure.
I also get out of breath so easily if I walk up stairs or lift something heavy. I will also sweat like I ran 30 miles from doing little things too. I was an Athlete before all of this. I use to run 3 mils a few times a week and this out of breath is something different then anything I have ever experienced.
I take low dose opiates for the pain, but I have also found that it helps calm down my central nervous system. I have found out through many other tests that I have excessive sympathetic output, or aka the fight or flight response. I have high amounts of Norepinephrine outflow measured in the urine. Because of the empty sella, my Testosterone is low.
I'm told the Pituitary should bounce back after the shunt and I know low T in a man can cause some of my symptoms, but certainly just a few of them.
I have crazy pain again at the base of the skull, but also in the neck, across the shoulders and 1/2 way down my thoracic spine. Sometimes, it feels like I fell off a ladder and got the wind knocked out of me. I am fatigued all of the time and can't get good rest. I do have sleep apnea from all of this too. I wear a mask while I sleep for this. Amazingly, I can still drive and I hate when I'm out and I feel lost. Its so hard to explain brain fog to anyone. I always know who I am and where I am, but things can get so distorted. Sometimes, I need navigation even around where I live. I'm not truly lost, but I lose my bearings.
This illness is so very scary and so poorly understood. I am making so many connection between things like Salt intake and reduction. If I eat salty popcorn, I am such a mess soon after and the next day. Again, not just laying flat for too long, but if I stand up for too long, it seems my pressure goes up, although I have no true proof in number. I do best reclined in a chair about 30-45 degrees. Getting up an walking for a short time can help with many symptoms. They are never gone per say, but they can become manageable at best.
Hope to hear some replies... Thanks for reading..
Greg
I certainly have all of those things, but I also have so many other symptoms. I have made many observations about my illness that I want to see how many others can relate. I was misdiagnosed with many things over the years, but a recent LP revealed my pressure at 40mm H2O. This confirmed the diagnosis. I failed medications and now going for a shunt in a few day. I am aware of the complications of shunts, but I have to get some relief. I can't do much like I am.
So, I wanted to ask how many of you experience similar as to what I do. I have noticed that I am worse in the mornings and the longer I lay flat while sleeping, the worst I am when I get up. If I can do only 4-5 hours of sleep, I'm only 1/2 as bad as if I sleep for 8 or 9 hours during the night.
When I get up, I walk like a penguin to the bathroom as I have so much pain and very stiff in my leg muscles and ankles. I quickly go to my office chair to sit and I feel like I'm having a stroke. My speech is slurred. I am very weak. I have numbness and tingling in my right arm, like an Ulnar nerve compression, but it is not. I feel pain down my spine that makes me feel short of breath. I also have severe pain/pressure in the back of my head just below the two notches at the base of the skull. My right ear is constantly ringing and goes back and forth between a constant ringing and a pulsatile tinnitus. My right eye feels swollen right out of bed and opens better as the day goes on. If I exert myself, my heart rate goes nuts (POTS) but my blood pressure is always ok. I have anxiety from hell, but it's not a worry anxiety. It comes with high pressure. Also, my emotions will run rampid at time. I feel like I'm gonna cry for no reason and it is def. a symptom instead of my having bad sad thoughts.
I have such bad brain fog all day long. I feel brain damaged, but I know that I am not. My MRI's are all normal. I did find I had Empty Sella and now on Testosterone treatment for this. I hope that the shunt will allow many of these symptoms to revers.
I feel like I have this so much worse than most of you here from what I read, but then again, some are better at putting things into words than others, so not really sure.
I also get out of breath so easily if I walk up stairs or lift something heavy. I will also sweat like I ran 30 miles from doing little things too. I was an Athlete before all of this. I use to run 3 mils a few times a week and this out of breath is something different then anything I have ever experienced.
I take low dose opiates for the pain, but I have also found that it helps calm down my central nervous system. I have found out through many other tests that I have excessive sympathetic output, or aka the fight or flight response. I have high amounts of Norepinephrine outflow measured in the urine. Because of the empty sella, my Testosterone is low.
I'm told the Pituitary should bounce back after the shunt and I know low T in a man can cause some of my symptoms, but certainly just a few of them.
I have crazy pain again at the base of the skull, but also in the neck, across the shoulders and 1/2 way down my thoracic spine. Sometimes, it feels like I fell off a ladder and got the wind knocked out of me. I am fatigued all of the time and can't get good rest. I do have sleep apnea from all of this too. I wear a mask while I sleep for this. Amazingly, I can still drive and I hate when I'm out and I feel lost. Its so hard to explain brain fog to anyone. I always know who I am and where I am, but things can get so distorted. Sometimes, I need navigation even around where I live. I'm not truly lost, but I lose my bearings.
This illness is so very scary and so poorly understood. I am making so many connection between things like Salt intake and reduction. If I eat salty popcorn, I am such a mess soon after and the next day. Again, not just laying flat for too long, but if I stand up for too long, it seems my pressure goes up, although I have no true proof in number. I do best reclined in a chair about 30-45 degrees. Getting up an walking for a short time can help with many symptoms. They are never gone per say, but they can become manageable at best.
Hope to hear some replies... Thanks for reading..
Greg
The only reason I'm asking is because almost all the symptoms you described are spot on with what was going on with me. Some doctors miss a chiari malformation because they aren't familiar enough with it to make a diagnosis.
Even in Chiari, after all of the research I have done, the problem does appear to be high Intracranial Pressure, which I do know I have. Again, mine was 40mm H20. So, normal is 15 or so.
Thanks so much and write back if you have time.
Greg
Nicole
My name is Mallory. I have been dealing with IH and another condition, Arnold Chiari Malformation, for 4 years now. I have had many symptoms over the past few years and some overlap with yours. Pain at the base of the skull, nausea, numbness in my feet and some weakness in my legs, loss of reflexes, horrific headaches, vomiting, shoulder and upper back pain all attributed to Chiari...it actually sounds like you might have it as well. It is typically diagnosed by MRI, but some don't consider it Chiari unless it meets the standard 5mm brain herniation drop into the spinal canal.
I also know when I didn't exercise much I became for weak and it was challenging for me to simple go up or down stairs, walk even part of a street block...
Medications can also aggravate things or cause side effects.
The way our CSF flows and is released from the head is through the jugular Forman in the neck. If we are lying down it is more challenging for the fluid to go into this vein to be ultimately released into the blood stream. Gravity also helps to pull fluid from the brain so when you sit up it is natural that you should feel better. I had to prop myself up in bed so I could sleep without horrible pain in the morning.
I have had 8 shunt surgeries in the past three years and have had complications because of my anatomy. I hope this shunt surgery helps your pain and significantly reduces your headaches. Speaking from experience, your other symptoms may not go away with the shunt because you may have an underlying condition that set off your IH. But hopefully if they eliminate some of the symptoms with the shunt, they can more easily pin point what the underlying condition might be.
Welcome to our group and best of luck with your surgery!
If you have any questions there are several of us on here who have had experience with not only meds, but surgeries as well.
Mal
I do have the Empty Sella however. I also have about 90% of the listed Chiari symptoms, so I tend to think I have it anyhow.
I'm curious what more would a decompression do then a shunt ? Isn't the problem the high ICP ? If your blocked at the FM, then it's the high pressure on either side of the blockage that would hinder CSF drainage right ? This, in turn, would cause high ICP and thus all of the symptoms. That is how I understand it, perhaps I am wrong.
Assuming I am correct and don't have a blockage at the FM, wouldn't a shunt then "Fix me" ? I hate to think I would need all of those revisions, but so be it if in between I would be somewhat normal again.
I do notice so many of my symptoms that get worse if I sit a certain way or lay flat too long. I also notice that I do better when I visit my parents, which is about 300 feet above sea level compared to the 1400 feet I live at above sea level. Not sure why, but in a swimming pool, the buoyancy seems to do something beneficial too.
On the flip side, if I eat too much salt, like PopCorn, my symptoms worsen for days. Lasix helps me a little bit too.
I couldn't tolerate Acetazolamide or Topiramate side effects, so I don't know what they would have done long term.
Just to reiterate, my LP opening pressure was 40. I know nothing is black and white with this stuff, but to me, it just makes sense that if there is high pressure on any of the cranial nerves or any of the spinal nerves, one could have anything from pain in the little toe to a full blown seizure.
My Testosterone is just 175 which coincides with the Empty Sella.
I also think that the brain fog could be from Toxins that build up in the CSF.
I'll know more after I get this shunt placed for my own case. In the meantime, it's all conjecture, but I try and figure everything out, it's just my nature.
Thanks for all of your replies. I certainly learn from all of your experiences as well.
Greg
having OSA and IIH can be a catch 22. I was only able to solve this problem with jaw surgery. I hope you do OK with your shunt but if you continue to have problems, it's something to consider.
you can try sleeping at a 30-45 degree angle; this will decrease airway collapse and hopefully reduce ICP buildup in the horizontal position. however, from what you describe, I suspect your airway is only about 2 mm in diameter so there's not much to collapse. you can confirm this by looking at your airway on the brain MRI you had. look for the lateral view that cuts through the tip of your nose and your epiglottis.
take a look at my recent paper:
http://authors.elsevier.com/a/1Q6CY15pGbfCDU
available here for a few more weeks.