It’s all in your head Is it all in your head? You started to wonder because some days, feeling like a million bucks, you have the motivation to take on the world. You feel great almost normal except for the constant low tone in your ears and the sudden onset of extreme rushing headaches brought on by any type of straining. Yeah, don’t bend over because you will keep going or feel as if you will pass out upon standing. Oh, and don’t cough or sneeze or laugh either. These are the good days. Then comes the bad days, when you wake and feel, why even bother getting up. Your head hurts so bad you have to pick it up to turn it on your pillow to the other side. You can’t focus or see any one particular thing. Your body feels as if you have literally been run over almost like the flu but without the cold symptoms. You try and explain to others and you know the words you are looking for but cant recall them, you feel like an idiot. You don’t remember falling asleep or what you were doing before you laid down or who you talked to last or what you ate. You don’t know what time you took your meds or if you even took them at all. Then as you are thinking very hard to recall these minute details, the brain zaps start, those quick millisecond electric sensations of attempts to reconnect the brain to itself. That’s the only way I can explain it. It’s almost like touching your tongue to a 9V battery or touching a fork to a filling in tooth but in your brain. So you decide to go ahead and get up and someone thinks they’re helping by turning the light on, NO. The light pierces through your eyes into our brain, it feels like a heated ice pick is being forced all the way thru to the base of your skull. I know this all sounds weird and like its in our heads but guess what, it’s not. It’s Chiari Malformation. The two most common symptoms are constant pain at the base of the skull and severe headaches. Other symptoms include balance problems, “drop attacks”, tingling or pain in the arms or legs, swallowing difficulty, dizziness/vertigo, visual disturbances, sleep apnea, ringing in the ears, heart palpitations, impaired fine motor skills, and chronic fatigue, onset of headache when laughing coughing or sneezing, articulating words, extreme sensitivity to light and noise, and petite mal seizures among other possible symptoms due to complications of Chiari or other related conditions. In addition to misdiagnosis, a common complaint of Chiari patients is that doctors just don’t listen well. Many times a patient exhibits Chiari symptoms and will be passed on from one doctor to another and be treated for migraines, fibromyalgia, psychiatric problems, sleep apnea, hormone imbalance, chiropractic problems or other symptoms and the core problem is not apparent or discovered for some time…years, perhaps. One of my friends saw over a hundred doctors on her Chiari journey before she found one who “put it all together”. This is the story of our lives. Those famous words we get so tired of hearing “ It’s all in your head” They are right it is in our heads but it is real.One MRI scan is worth a thousand words…or a hundred doctor visits! Hydrocephalus, Spina Bifida, Syringomyelia, Tethered Cord Syndrome, and Spinal Curvature are related conditions as well as “sister” conditions such as Ehlers Danlos Syndrome. Many Chiarians also struggle with multiple diagnosis and are required to have several surgeries. One is on her SEVENTEENTH surgery. This speaks to the persistence and the patience and fortitude that Chiarians have. We have great honor and respect for our “Zipperhead” friends. They are the ones who have survived the challenges of brain surgery and have the tell tale scar on the back of their skulls that appears to look like a zipper! To look at us, you would think we are fine, healthy, feeling good and looking for attention, but if we could trade places with you for only a minute to let you experience it or yourself we would but quickly take it back because we don’t want anyone else to have to suffer the trials we face daily. For the Doctors that look at you as if you are making it all up in an attempt to get medicine, I wish again sometimes that there was a chair that we could sit you in and push certain buttons to administer to you the exact pain that were have and where, the spots we see in our vision, the feeling of fluid rushing into your brain that forces you to grab your head and sit or get down low to avoid falling so far when you pass out. But then again, I don’t wish this disorder on anyone. Taffiney Sherril
|
It’s all in your head
Is it all in your head? You started to wonder because some days, feeling like a million bucks, you have the motivation to take on the world. You feel great almost normal except for the constant low tone in your ears and the sudden onset of extreme rushing headaches brought on by any type of straining. Yeah, don’t bend over because you will keep going or feel as if you will pass out upon standing. Oh, and don’t cough or sneeze or laugh either. These are the good days. Then comes the bad days, when you wake and feel, why even bother getting up. Your head hurts so bad you have to pick it up to turn it on your pillow to the other side. You can’t focus or see any one particular thing. Your body feels as if you have literally been run over almost like the flu but without the cold symptoms. You try and explain to others and you know the words you are looking for but cant recall them, you feel like an idiot. You don’t remember falling asleep or what you were doing before you laid down or who you talked to last or what you ate. You don’t know what time you took your meds or if you even took them at all. Then as you are thinking very hard to recall these minute details, the brain zaps start, those quick millisecond electric sensations of attempts to reconnect the brain to itself. That’s the only way I can explain it. It’s almost like touching your tongue to a 9V battery or touching a fork to a filling in tooth but in your brain. So you decide to go ahead and get up and someone thinks they’re helping by turning the light on, NO. The light pierces through your eyes into our brain, it feels like a heated ice pick is being forced all the way thru to the base of your skull. I know this all sounds weird and like its in our heads but guess what, it’s not. It’s Chiari Malformation.
The two most common symptoms are constant pain at the base of the skull and severe headaches. Other symptoms include balance problems, “drop attacks”, tingling or pain in the arms or legs, swallowing difficulty, dizziness/vertigo, visual disturbances, sleep apnea, ringing in the ears, heart palpitations, impaired fine motor skills, and chronic fatigue, onset of headache when laughing coughing or sneezing, articulating words, extreme sensitivity to light and noise, and petite mal seizures among other possible symptoms due to complications of Chiari or other related conditions. In addition to misdiagnosis, a common complaint of Chiari patients is that doctors just don’t listen well. Many times a patient exhibits Chiari symptoms and will be passed on from one doctor to another and be treated for migraines, fibromyalgia, psychiatric problems, sleep apnea, hormone imbalance, chiropractic problems or other symptoms and the core problem is not apparent or discovered for some time…years, perhaps. One of my friends saw over a hundred doctors on her Chiari journey before she found one who “put it all together”. This is the story of our lives. Those famous words we get so tired of hearing “ It’s all in your head” They are right it is in our heads but it is real.One MRI scan is worth a thousand words…or a hundred doctor visits! Hydrocephalus, Spina Bifida, Syringomyelia, Tethered Cord Syndrome, and Spinal Curvature are related conditions as well as “sister” conditions such as Ehlers Danlos Syndrome. Many Chiarians also struggle with multiple diagnosis and are required to have several surgeries. One is on her SEVENTEENTH surgery. This speaks to the persistence and the patience and fortitude that Chiarians have. We have great honor and respect for our “Zipperhead” friends. They are the ones who have survived the challenges of brain surgery and have the tell tale scar on the back of their skulls that appears to look like a zipper! To look at us, you would think we are fine, healthy, feeling good and looking for attention, but if we could trade places with you for only a minute to let you experience it or yourself we would but quickly take it back because we don’t want anyone else to have to suffer the trials we face daily. For the Doctors that look at you as if you are making it all up in an attempt to get medicine, I wish again sometimes that there was a chair that we could sit you in and push certain buttons to administer to you the exact pain that were have and where, the spots we see in our vision, the feeling of fluid rushing into your brain that forces you to grab your head and sit or get down low to avoid falling so far when you pass out. But then again, I don’t wish this disorder on anyone.Taffiney Sherril