You could wake up one day and suddenly find that your whole life has changed.
It might begin with some headaches, maybe they come on suddenly, and last longer than your "usual" headache. Maybe you start to feel a "pressure" inside your skull that you can't seem to relieve no matter what you do. Or when you bend over and stand up quickly everything goes black for a few seconds. Then the real fun begins. You begin to feel nauseated, and if your lucky you don't vomit profusely with this new headache and head pressure. But if you do? That's a new kind of hell you never before imagined. Because this only increases the pressure inside your skull. Your headaches may be centered behind one or both of your eyes. It may hurt to move your eyes. And sunglasses are now more important to you than your underwear, because you will sometimes go commando my friends, but be caught dead in bright light without eye protection, well that's just crazy. Photophobia or extreme sensitivity to light is a new one you can add to your resume.
Then you begin to feel as though you are standing on the deck of a ship in stormy seas, like the world around you is rolling and swaying, the only problem is you're standing still. Or at least trying to. Now this really ramps up the nausea fun, because now you are sea sick on dry land. Or you may find that the only way to stay on your feet is to lean on the walls, counters and tables around you. Try to do this nonchalantly all the time. I thought about changing my name to Eileen ( I lean). Sometimes you will set out on a journey to the kitchen, and find that you have veered completely off course, but you didn't fall down and that's good, you think.
And to everyone else? Well, to them you look perfectly normal, if a little green around the gills. This is frustrating, because no one can understand this frightening and confusing change that is taking place inside your head and you can't really figure out how to articulate just what you are feeling, because you really aren't sure what you are feeling. All you know is that this is definitely not right. Oh yes and you are terrified.
This new situation can be accompanied by a number of other symptoms, which are often very confusing to patients and medical providers alike as they are consistent with thousands of possible diagnoses. You may experience something called pulsitile tinnitis. This could manifest as a constant ringing in your ears, or a whooshing sound that reminds you every time your heart beats that something upstairs is not right.
You may experience stiffness of the neck, pain in the thoracic spine, arms, lumbar spine, hips and knees. So now your taking your temperature every ten minutes because you are sure that you have meningitis. Researchers believe that this pain and stiffness is caused by excess Cerebral Spinal Fluid (CSF) which is stretching nerve sheaths and pressing on the spinal column. But you don't know this. You now are certain that you are infected with some horrible brain eating bacteria and are obviously going to die. Rest assured, your not going to die, but you should be concerned about your vision.
You may experience Transient Visual Obscurations (TVO's). These can be spots, squiggly lines, areas in your visual field that are grayed or blacked out, or complete blindness in one or both eyes. This is the really scary news. This condition can cause blindness. This is caused by Papiladema. Excess spinal fluid puts pressure on the optic nerves. Sometimes this pressure is transient and comes and goes with the fluctuations of your intercranial pressure. Sometimes, it causes permanant damage. This is about the worst case scenario. One myth about this condition is that everyone with IIH has papiledema. This is untrue. You can have IIH without papiledema. I wouldn't lie to you.
You may feel extreme fatigue, malaise, depression. Exercise while fun to do, may be nearly impossible for you. You may work out today but you will pay for it tomorrow. You may experience difficulty falling asleep or staying asleep, headaches may wake you up. Your headaches and head pressure may be worse in the morning.
Rhinorrhea, or a leaking of spinal fluid from your nose may occur. This is not super common, but it can happen. Pressure placed on your olfactory nerves can diminish or completely eliminate your sense of smell. You may have sinus problems, congestion etc.
Memory and cognitive problems are common. you may forget things, not be able to find words when you need them, you may experience some periods of confusion in familiar surroundings. This is all very frightening, but it can happen so you should know. I wish i had a tee shirt that said "stay tuned, another thought is processing".
Endocrine problems may occur due to pressure inside your skull pushing on your pituitary gland. Sometimes this can be seen on Brain MRI's and is noted as Empty Sella Syndrome, because the pituitary gland is pressed flat, and the place where it is supposed to sit, appears to be "empty". Incidentally, this may be the only unusual finding on your MRI. For the most part, it will appear absolutely normal if you have communicating hydrocephalus. This is also a very puzzling and frustrating situation, because there is clearly "nothing wrong". But we will cover this situation in an upcoming blog, titled The Princess and the Frog.
Long story short. This is a pretty rare condition. It affects about 1 in every 100,000 people. In obese, females of childbearing age, the incidence occurs at a rate of about 20 in every 100,000. Because of this you will probably be directed to "lose weight", but this doesn't always work. There are two types of this condition. One is IIH the other is called Secondary Intercranial Hypertension, and is caused by another condition. We will discuss the possible causes of this condition a little later. As you are probably on information overload already.
Rest assured, you are not alone and there is help out there.
It might begin with some headaches, maybe they come on suddenly, and last longer than your "usual" headache. Maybe you start to feel a "pressure" inside your skull that you can't seem to relieve no matter what you do. Or when you bend over and stand up quickly everything goes black for a few seconds. Then the real fun begins. You begin to feel nauseated, and if your lucky you don't vomit profusely with this new headache and head pressure. But if you do? That's a new kind of hell you never before imagined. Because this only increases the pressure inside your skull. Your headaches may be centered behind one or both of your eyes. It may hurt to move your eyes. And sunglasses are now more important to you than your underwear, because you will sometimes go commando my friends, but be caught dead in bright light without eye protection, well that's just crazy. Photophobia or extreme sensitivity to light is a new one you can add to your resume.
Then you begin to feel as though you are standing on the deck of a ship in stormy seas, like the world around you is rolling and swaying, the only problem is you're standing still. Or at least trying to. Now this really ramps up the nausea fun, because now you are sea sick on dry land. Or you may find that the only way to stay on your feet is to lean on the walls, counters and tables around you. Try to do this nonchalantly all the time. I thought about changing my name to Eileen ( I lean). Sometimes you will set out on a journey to the kitchen, and find that you have veered completely off course, but you didn't fall down and that's good, you think.
And to everyone else? Well, to them you look perfectly normal, if a little green around the gills. This is frustrating, because no one can understand this frightening and confusing change that is taking place inside your head and you can't really figure out how to articulate just what you are feeling, because you really aren't sure what you are feeling. All you know is that this is definitely not right. Oh yes and you are terrified.
This new situation can be accompanied by a number of other symptoms, which are often very confusing to patients and medical providers alike as they are consistent with thousands of possible diagnoses. You may experience something called pulsitile tinnitis. This could manifest as a constant ringing in your ears, or a whooshing sound that reminds you every time your heart beats that something upstairs is not right.
You may experience stiffness of the neck, pain in the thoracic spine, arms, lumbar spine, hips and knees. So now your taking your temperature every ten minutes because you are sure that you have meningitis. Researchers believe that this pain and stiffness is caused by excess Cerebral Spinal Fluid (CSF) which is stretching nerve sheaths and pressing on the spinal column. But you don't know this. You now are certain that you are infected with some horrible brain eating bacteria and are obviously going to die. Rest assured, your not going to die, but you should be concerned about your vision.
You may experience Transient Visual Obscurations (TVO's). These can be spots, squiggly lines, areas in your visual field that are grayed or blacked out, or complete blindness in one or both eyes. This is the really scary news. This condition can cause blindness. This is caused by Papiladema. Excess spinal fluid puts pressure on the optic nerves. Sometimes this pressure is transient and comes and goes with the fluctuations of your intercranial pressure. Sometimes, it causes permanant damage. This is about the worst case scenario. One myth about this condition is that everyone with IIH has papiledema. This is untrue. You can have IIH without papiledema. I wouldn't lie to you.
You may feel extreme fatigue, malaise, depression. Exercise while fun to do, may be nearly impossible for you. You may work out today but you will pay for it tomorrow. You may experience difficulty falling asleep or staying asleep, headaches may wake you up. Your headaches and head pressure may be worse in the morning.
Rhinorrhea, or a leaking of spinal fluid from your nose may occur. This is not super common, but it can happen. Pressure placed on your olfactory nerves can diminish or completely eliminate your sense of smell. You may have sinus problems, congestion etc.
Memory and cognitive problems are common. you may forget things, not be able to find words when you need them, you may experience some periods of confusion in familiar surroundings. This is all very frightening, but it can happen so you should know. I wish i had a tee shirt that said "stay tuned, another thought is processing".
Endocrine problems may occur due to pressure inside your skull pushing on your pituitary gland. Sometimes this can be seen on Brain MRI's and is noted as Empty Sella Syndrome, because the pituitary gland is pressed flat, and the place where it is supposed to sit, appears to be "empty". Incidentally, this may be the only unusual finding on your MRI. For the most part, it will appear absolutely normal if you have communicating hydrocephalus. This is also a very puzzling and frustrating situation, because there is clearly "nothing wrong". But we will cover this situation in an upcoming blog, titled The Princess and the Frog.
Long story short. This is a pretty rare condition. It affects about 1 in every 100,000 people. In obese, females of childbearing age, the incidence occurs at a rate of about 20 in every 100,000. Because of this you will probably be directed to "lose weight", but this doesn't always work. There are two types of this condition. One is IIH the other is called Secondary Intercranial Hypertension, and is caused by another condition. We will discuss the possible causes of this condition a little later. As you are probably on information overload already.
Rest assured, you are not alone and there is help out there.