Discussions By Condition: I cannot get a diagnosis.

Cognitive impairment, POTS

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: Cutoff92
  • January 6, 2011
  • 02:45 AM

I am an 18 year old male with a bunch of obscure things going on. I'm just gonna get straight to the area which with i'm most concerned about and NEED answers. well i've been suffering for five years and it all began with headaches. I have been diagnosed with POTS, a connective tissue disorder(non-specified) sleep apnea, i've had a vp shunt put in for increased spinal fluid pressure, and I've had a spinal cord detethering surgery. Anyway to get to the problem.

I have severe cognitive impairment. I have to literally strain my brain to say a couple words in my head. It is like my head is compressed and suffocating. It literally feels that way too. I have headaches 24/7 due to a retroflexed odontoid which i might get surgey for. My eyes are droopy, my scalp is super tender and I can't shake my head run or jump because it hurts like ***l because i feel like I have no fluid in my head. Anyway, I can't remember my childhood or recall a visual memory. I don't have a train of thought or anything. Just the words i force in my head. I can 't converse with people because of this. The thing is I have had mri's and nothing shows up. Io also have had tons of blood tests done.

After tons of researech ivenever heard of a cognitive problem like mine where i just cant think. What is it? Is it a blood flow problem? Is it stenossis of some nerves around the retroflexed odontoid like i believe? I've been throguh the pychiatric gambit at the beggining which was ***l and now i'm seeing a nuerosurgeon who did my surgeries. Does it have to do with csf flow even though my shunt is working?(from which i found no relief) He ordered a PET scan. Will this help determine my functioning problem? Please think outside the box with help!

p.s. ive been tested for lyme/thyroid/ a TON of blood tests.

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11 Replies:

  • I am an 18 year old male with a bunch of obscure things going on. I'm just gonna get straight to the area which with i'm most concerned about and NEED answers. well i've been suffering for five years and it all began with headaches. I have been diagnosed with POTS, a connective tissue disorder(non-specified) sleep apnea, i've had a vp shunt put in for increased spinal fluid pressure, and I've had a spinal cord detethering surgery. Anyway to get to the problem. I have severe cognitive impairment. I have to literally strain my brain to say a couple words in my head. It is like my head is compressed and suffocating. It literally feels that way too. I have headaches 24/7 due to a retroflexed odontoid which i might get surgey for. My eyes are droopy, my scalp is super tender and I can't shake my head run or jump because it hurts like ***l because i feel like I have no fluid in my head. Anyway, I can't remember my childhood or recall a visual memory. I don't have a train of thought or anything. Just the words i force in my head. I can 't converse with people because of this. The thing is I have had mri's and nothing shows up. Io also have had tons of blood tests done.After tons of researech ivenever heard of a cognitive problem like mine where i just cant think. What is it? Is it a blood flow problem? Is it stenossis of some nerves around the retroflexed odontoid like i believe? I've been throguh the pychiatric gambit at the beggining which was ***l and now i'm seeing a nuerosurgeon who did my surgeries. Does it have to do with csf flow even though my shunt is working?(from which i found no relief) He ordered a PET scan. Will this help determine my functioning problem? Please think outside the box with help! p.s. ive been tested for lyme/thyroid/ a TON of blood tests.Bump! Aslo I get severe flushing of the face and it's strong on one side for some reason.
    Cutoff92 6 Replies
    • January 12, 2011
    • 04:30 AM
    • 0
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  • I am an 18 year old male with a bunch of obscure things going on. I'm just gonna get straight to the area which with i'm most concerned about and NEED answers. well i've been suffering for five years and it all began with headaches. I have been diagnosed with POTS, a connective tissue disorder(non-specified) sleep apnea, i've had a vp shunt put in for increased spinal fluid pressure, and I've had a spinal cord detethering surgery. Anyway to get to the problem. I have severe cognitive impairment. I have to literally strain my brain to say a couple words in my head. It is like my head is compressed and suffocating. It literally feels that way too. I have headaches 24/7 due to a retroflexed odontoid which i might get surgey for. My eyes are droopy, my scalp is super tender and I can't shake my head run or jump because it hurts like ***l because i feel like I have no fluid in my head. Anyway, I can't remember my childhood or recall a visual memory. I don't have a train of thought or anything. Just the words i force in my head. I can 't converse with people because of this. The thing is I have had mri's and nothing shows up. Io also have had tons of blood tests done.After tons of researech ivenever heard of a cognitive problem like mine where i just cant think. What is it? Is it a blood flow problem? Is it stenossis of some nerves around the retroflexed odontoid like i believe? I've been throguh the pychiatric gambit at the beggining which was ***l and now i'm seeing a nuerosurgeon who did my surgeries. Does it have to do with csf flow even though my shunt is working?(from which i found no relief) He ordered a PET scan. Will this help determine my functioning problem? Please think outside the box with help! p.s. ive been tested for lyme/thyroid/ a TON of blood tests.PLEASE THINK OUTSIDE OF THE BOX... I love that comment. I have been in a situation now for eight months and the doctors don't begin to know how to think outside of the box.CSF can cause many things. I was kicked in the head and now I have muscle spasms and headaches and nausea along with much more. My skull is tender so tender I cannot brush my hair. Honestly to me it sounds like CSF is leaking? How is your white count and have they checked you for a Very Rare form of diabeties that is so rare it causes you to drink much water but you still feel foggy all the time. It is caused by one of the glands in your brain/head. Have you seen an endoctrine doc to check all of your hormones and glands to make sure they are ok? My legs burn and I get muscle spasms and my head is so sore and I feel awful to tired to even walk. Finally they put me on an antibiotic and my head cleared up and spasms cleared up and burning skin cleared up but with no diagnosis. I took Biaxon. I know when I finish it that the symptoms will slowly come back because they have not gotten to the root of the problem. If your head ever swelled and you did not notice then it stretched the skin on your skull. Those muscles then spasm but you cannot feel it when they do. Do you have liquid coming from ears? eyes? Your brain can shrink in upon itself if you have a bleed or tumor or anything else making the cavity for the brain to small for the brain to fit. CT should show that you brain is folding over onto itself. If you had shunt put in I'm sure you probably had a CT so the Pet Scan is good. I wish they would do that for me. My dad had been loosing blood and all the tests in the world did not show it but the PET scan did not show it either. It cannot hurt to have yourself scanned with a PET they just might find out what the problem is. I have tight ligaments and muscles and my brain is what is causing it to happen. If you feel like your brain is congested then it is congested. Not enough room or something in there taking up to much room. There is another procedure now besides shunts that have a much higher success rate but I cannot remember the name of the procedure. If you have to go to Clevlend Clinic in Ohio. They are the best of the best. You can even call them with your symptoms. Honestly Don't give up. The doctors are sleeping on us and not even trying to find things out anymore. It is NOT in your head or you would not be begging for help. Take Care and please keep me posted. I am a medical mystery also.
    Anonymous 42789 Replies
    • January 16, 2011
    • 02:53 PM
    • 0
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  • Bump! Aslo I get severe flushing of the face and it's strong on one side for some reason. Bump! I know some guru will help me out. FYI a retroflexed odontoid is that little bone at the top of your cervical spine that cvan press on your spinal cord.
    Cutoff92 6 Replies
    • January 20, 2011
    • 04:31 AM
    • 0
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  • I am an 18 year old male with a bunch of obscure things going on. I'm just gonna get straight to the area which with i'm most concerned about and NEED answers. well i've been suffering for five years and it all began with headaches. I have been diagnosed with POTS, a connective tissue disorder(non-specified) sleep apnea, i've had a vp shunt put in for increased spinal fluid pressure, and I've had a spinal cord detethering surgery. Anyway to get to the problem. I have severe cognitive impairment. I have to literally strain my brain to say a couple words in my head. It is like my head is compressed and suffocating. It literally feels that way too. I have headaches 24/7 due to a retroflexed odontoid which i might get surgey for. My eyes are droopy, my scalp is super tender and I can't shake my head run or jump because it hurts like ***l because i feel like I have no fluid in my head. Anyway, I can't remember my childhood or recall a visual memory. I don't have a train of thought or anything. Just the words i force in my head. I can 't converse with people because of this. The thing is I have had mri's and nothing shows up. Io also have had tons of blood tests done.After tons of researech ivenever heard of a cognitive problem like mine where i just cant think. What is it? Is it a blood flow problem? Is it stenossis of some nerves around the retroflexed odontoid like i believe? I've been throguh the pychiatric gambit at the beggining which was ***l and now i'm seeing a nuerosurgeon who did my surgeries. Does it have to do with csf flow even though my shunt is working?(from which i found no relief) He ordered a PET scan. Will this help determine my functioning problem? Please think outside the box with help! p.s. ive been tested for lyme/thyroid/ a TON of blood tests.I am 17 and have been experiencing many of the same symptoms including: the inability to think (but only when I am upright), droopy eyes (when I am upright), POTS, Ehlers-Danlos Syndrome (a connective tissue disorder), and sleep apnea. One of my main symptoms is when I have been upright for more than 10-15 minutes I feel like I do not have enough blood in my brain and then I experience cognitive and memory impairment. I will eventually nearly pass out if I do not lie down. Lying down relieves most of my symptoms but I remain exhausted. I do not have any pain but do experience severe lightheadedness. My sister has the same conditions that I do to a lesser extent, and does experience headaches.I have had two fusions to lift my skull and reposition my odontoid and a detethering operation. I have been to New York and Maryland for these treatments. Are you seeing either of these neurosurgeons?I was on a tilt table test with a spectroscopy, which showed that I only had 48% blood flow to my brain when I was upright, and decreased but better blood flow when I was laying down (60+%).I was tested for narcolepsy, but that was negative. I have cataplexy, but I should not be able to have that without having narcolepsy so they are diagnosing me with mixed epilepsy disorder instead.Does lying down relieve your symptoms? I have never found anyone else who experiences symptoms like me.I created this website a while back in the hopes of helping somebody find a diagnosis. Maybe it will be beneficial to you as you are considering a fusion. www.medicalzebras.comYou could also visit my CaringBridge for more information.www.caringbridge.org/visit/samanthanapier
    Anonymous 42789 Replies
    • January 20, 2011
    • 06:51 AM
    • 0
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  • Do you or have you ever taken anxiety medication? If so that could be why
    Anonymous 42789 Replies
    • January 29, 2011
    • 04:23 AM
    • 0
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  • Bump! I know some guru will help me out. FYI a retroflexed odontoid is that little bone at the top of your cervical spine that cvan press on your spinal cord.One more try. PLEASE I AM DESPERATE!! Someone has to have ideas!!!!
    Cutoff92 6 Replies
    • February 2, 2011
    • 08:59 PM
    • 0
    Flag this Response
  • I am an 18 year old male with a bunch of obscure things going on. I'm just gonna get straight to the area which with i'm most concerned about and NEED answers. well i've been suffering for five years and it all began with headaches. I have been diagnosed with POTS, a connective tissue disorder(non-specified) sleep apnea, i've had a vp shunt put in for increased spinal fluid pressure, and I've had a spinal cord detethering surgery. Anyway to get to the problem. I have severe cognitive impairment. I have to literally strain my brain to say a couple words in my head. It is like my head is compressed and suffocating. It literally feels that way too. I have headaches 24/7 due to a retroflexed odontoid which i might get surgey for. My eyes are droopy, my scalp is super tender and I can't shake my head run or jump because it hurts like ***l because i feel like I have no fluid in my head. Anyway, I can't remember my childhood or recall a visual memory. I don't have a train of thought or anything. Just the words i force in my head. I can 't converse with people because of this. The thing is I have had mri's and nothing shows up. Io also have had tons of blood tests done.After tons of researech ivenever heard of a cognitive problem like mine where i just cant think. What is it? Is it a blood flow problem? Is it stenossis of some nerves around the retroflexed odontoid like i believe? I've been throguh the pychiatric gambit at the beggining which was ***l and now i'm seeing a nuerosurgeon who did my surgeries. Does it have to do with csf flow even though my shunt is working?(from which i found no relief) He ordered a PET scan. Will this help determine my functioning problem? Please think outside the box with help! p.s. ive been tested for lyme/thyroid/ a TON of blood tests.I had posted a reply to this 2 weeks ago as a guest, but apparently the moderator had issues with me linking an informational website to my reply.Your connective tissue disorder is almost certainly Ehlers-Danlos Syndrome. It causes sleep apnea, spinal cord tethering, POTS, and cranio-spinal instability (the bones in your neck move out of place, like your odontoid). Whenever I have been upright for more than 15 minutes, I experience many of the same symptoms you describe. I get "brain fog", lightheadedness, my right eye droops, and I get a feling in my head (not the lightheadedness) that I cannot describe but feels like either pressure in my head or not enough pressure or something. Every time I lay down these symptoms slowly go away. I have also been diagnosed with POTS, Ehlers-Danlos Syndrome (the connective tissue disorder), have had a spinal cord detethering, and have had two fusions to fix the bones in my neck that had moved out of place. I believe it is a blood flow problem. I had a near infrared spectroscopy which showed the blood flow to my brain decreased to 48% when I was upright. However, if your retroflexed odontoid has not been fixed, that could be causing some of your other symptoms. My nausea, overheating, and a different, separate lightheadedness that was unlike the kind I get now all went away after my fusions. In addition, the longer you go without having your instability fixed, the more symptoms you will get and the more permanent damage will be done.I have also recently been diagnosed with epilepsy, though. I am about to go see a doctor about that and will let you know what he says. I do not get headaches, but my sister has the same condition (EDS is genetic) and she has headaches whenever she tries to think. She also has POTS and has had a fusion, but otherwise she does not have the symptoms listed above.I wish you well.
    EDSdude14 2 Replies
    • February 3, 2011
    • 03:50 AM
    • 0
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  • Here is the website I was going to link:www.medicalzebras.comSee the links section of that website to see links to websites about Ehlers-Danlos Syndrome, POTS, and cranio-spinal instability.I hope this helps.
    EDSdude14 2 Replies
    • February 3, 2011
    • 03:52 AM
    • 0
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  • I had posted a reply to this 2 weeks ago as a guest, but apparently the moderator had issues with me linking an informational website to my reply.Your connective tissue disorder is almost certainly Ehlers-Danlos Syndrome. It causes sleep apnea, spinal cord tethering, POTS, and cranio-spinal instability (the bones in your neck move out of place, like your odontoid). Whenever I have been upright for more than 15 minutes, I experience many of the same symptoms you describe. I get "brain fog", lightheadedness, my right eye droops, and I get a feling in my head (not the lightheadedness) that I cannot describe but feels like either pressure in my head or not enough pressure or something. Every time I lay down these symptoms slowly go away. I have also been diagnosed with POTS, Ehlers-Danlos Syndrome (the connective tissue disorder), have had a spinal cord detethering, and have had two fusions to fix the bones in my neck that had moved out of place. I believe it is a blood flow problem. I had a near infrared spectroscopy which showed the blood flow to my brain decreased to 48% when I was upright. However, if your retroflexed odontoid has not been fixed, that could be causing some of your other symptoms. My nausea, overheating, and a different, separate lightheadedness that was unlike the kind I get now all went away after my fusions. In addition, the longer you go without having your instability fixed, the more symptoms you will get and the more permanent damage will be done.I have also recently been diagnosed with epilepsy, though. I am about to go see a doctor about that and will let you know what he says. I do not get headaches, but my sister has the same condition (EDS is genetic) and she has headaches whenever she tries to think. She also has POTS and has had a fusion, but otherwise she does not have the symptoms listed above.I wish you well.Sorry I took so long to post. Dr. Francomona did diagnose me with EDs but i don't have the hypermobility. I am seeing Dr. Henderson and might get the surgery soon or will get to see him March 7th. He seems to be very busy and scattered but i am working more closely with a Dr. Rowe who condones the surgery. Is there anyway I could contact you like through facebook or something? I would like to know more about the surgery and our similarities. Thanks
    Cutoff92 6 Replies Flag this Response
  • Sorry I took so long to post. Dr. Francomona did diagnose me with EDs but i don't have the hypermobility. I am seeing Dr. Henderson and might get the surgery soon or will get to see him March 7th. He seems to be very busy and scattered but i am working more closely with a Dr. Rowe who condones the surgery. Is there anyway I could contact you like through facebook or something? I would like to know more about the surgery and our similarities. ThanksI need to see MRI results with contrast and CT scans now.
    Anonymous 42789 Replies Flag this Response
  • I need to see MRI results with contrast and CT scans now.I'm sorry? for some reason i got notification of your post just today. Can we speak through another(faster) outlet?
    Cutoff92 6 Replies Flag this Response
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