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AH HA!!! Maybe I should quit reading old posts!!!!!!
Posted: 02 August 2013 12:50 PM   [ Ignore ]  
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I just read YAAAAY!!! from Happy Horse 12-28-11, i have had terrible eye pain for years and did get some relief from thyroid med as being hypo for 22 yrs and being told last yr i was hyper and meds were changed from synthoid to methimazole-eye pain better most of the time but when head hurts eye pain is so bad i don’t even want to move my eye. (eye pain is never gone totally but i can move my eye and i don’t have to go home and go to bed and try not to move my eyes!) eye exam july 2013 was normal? WOW i keep learning things every day by reading old and new posts!!!!! does anyone get dizzy just by moving your eyes- like when you’re reading, watching TV-i also can get really sick to my stomach? sometimes i feel like my bed is moving and i’m lying still and flat!!!! Amazing!!!

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Posted: 04 August 2013 10:02 AM   [ Ignore ]   [ # 1 ]  
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Yes, for me lately things are moving around.  Not vertigo - I’ve had that too.  But things are just slightly jiggling around and it hurts my eyes to try to look directly at one thing.  My eye exam is normal.  I am wondering if it is pre-syncope, as I have Vasovagal Syncope, and I remember during the TTT things moving around just before I fainted.

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Posted: 04 August 2013 06:09 PM   [ Ignore ]   [ # 2 ]  
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YES! I had not only discomfort when moving my eyes, sometimes I felt like I was about to pass out! Really weird, at my worst (or when my intracranial pressure soars for a number of reasons) I hear a funny noise when I move my eyes from side to side (but not up and down). I described it to my neuro as sort of a ‘Chich-chich’ sound (always twice). He gave me ‘that look’! wink As a therapeutic optometrist, this is not something we learn in school! But as soon as I lowered my intracranial pressure (Diamox), it STOPPED. Thank Heavens. I had my first high pressure episode in years (due to inflammation from an injury, likely—just my guess). and the same thing started to creep in. Once again, when I got my intra cranial pressure under control, it stopped. I have no doubt this symptom is from high intracranial pressure.

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 04 August 2013 06:18 PM   [ Ignore ]   [ # 3 ]  
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MJ - 04 August 2013 10:02 AM

My eye exam is normal.

I’ve found that most doctors call our MRI’s ‘normal’, our MRV’s ‘normal’ and our eye examinations ‘normal’. Looking at the RAW DATA, you would be SHOCKED at what is called ‘normal’! I like to look at the raw data, obviously, and for our eyes, after my clinical trial, I learned what to look for! This is NOT taught in school. If you have symptoms of hydrocephalus (please send my your Symptoms Checklist if you haven’t already), I can help you with that. I’ve joined up with http://www.TotalEyeCare (the eye care practice my hubby and I started—he still sees patients, while I lurk in the back doing research). We have a specialist working with us to assist with the treatment. Please let me know if you need help! We are covering out-of-pocket expenses for a few more folks, so we can get this in a peer-reviewed journal. I can’t tell you how AWESOME it is to get rid of that symptom! wink

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Posted: 04 August 2013 07:43 PM   [ Ignore ]   [ # 4 ]  
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YES, YES, YES - I NEED HELP!  Never got the checklist completed - couldn’t download it and you were bogged down (TOTALLY understand), but now I have an iPad and I will try again.  I will start by filling out the Symptom Checklist and sending it to you.  Can’t do it tonight; my neck pain and pressure in head unbearable in evenings.  Will get that out to you; just tell me what to do next!  By the way, is this a vein with 2 giant anneurisms, or do I have no clue what I am talking about? Oh, can’t attach MRI pic here…

And I know “that look” all too well.  I never got a chich-chich sound, but a soft clunking sound - also x2 lol - when I could clear some fluid out of my head (by manipulating the back of my neck or stretching my thoracic area and popping the vertebrae like a CHIRO would).  I literally feel the pressure around the bridge of my nose subsiding when I hear/feel that “clunking” sound.  There were also times the clunking happened on its own.  now I have evidence on an MRI (there’s way more than just this) of several protruding discs in thoracic area abutting spinal cord, and one indenting it.  AND THAT IS LAYING DOWN, NOT STANDING!  I am quite certain the “indenting” of the spinal cord is contributing the the intracranial pressure.

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Posted: 05 August 2013 07:36 AM   [ Ignore ]   [ # 5 ]  
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hi, yes i would love help too. let me know what you want me to do next i’m having problems getting my mri of head only. thanks denise

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Posted: 05 August 2013 10:40 PM   [ Ignore ]   [ # 6 ]  
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MJ - 04 August 2013 07:43 PM

YES, YES, YES - I NEED HELP!  Never got the checklist completed - couldn’t download it and you were bogged down (TOTALLY understand), but now I have an iPad and I will try again.  I will start by filling out the Symptom Checklist and sending it to you.  Can’t do it tonight; my neck pain and pressure in head unbearable in evenings.  Will get that out to you; just tell me what to do next!

Hi MJ, OK, Checklist! Yes. Then, can you send me a copy of your head/neck MRI?  Where would you be coming from? Feel free to switch to Clinical_Trials (at) Prettyill (dot)com to get you set up, OK? When I hear from you, I’ll shoot you an address to send the discs. I’ll open a folder for you right now, to try to stay organized! (ha).

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Posted: 05 August 2013 11:16 PM   [ Ignore ]   [ # 7 ]  
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dab78 - 05 August 2013 07:36 AM

hi, yes i would love help too. let me know what you want me to do next i’m having problems getting my mri of head only. thanks denise

Hi Denise, I just sent you an email. We will need an MRI. We can likely order that for you, if you are ‘our patient’ and we can justify it. How far away are you? Feel free to respond on our email thread, OK? Let’s get you some help with this! wink

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Posted: 06 August 2013 11:30 AM   [ Ignore ]   [ # 8 ]  
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Hi MJ, OK, Checklist! Yes. Then, can you send me a copy of your head/neck MRI?  Where would you be coming from? Feel free to switch to Clinical_Trials (at) Prettyill (dot)com to get you set up, OK? When I hear from you, I’ll shoot you an address to send the discs. I’ll open a folder for you right now, to try to stay organized! (ha).


Hi Dr. D!  You actually have a copy of my 2011 head& neck MRI.  It got lost in the shuffle at one point, but you tracked it down and had it sent to you from the person looking after that area.  We were going to do a consult, but you got busy with trials.  I have had an MRI this year, of my entire spine, but not my head.  Maybe the neck MRI will show part of the head?  This is the MRI showing my spinal cord indented in thoracic area.  The disc is sitting in Hamilton waiting for me to pick it up.  PLEASE LET ME KNOW IF YOU FIND THE 2011 MRI & IF YOU WANT 2013 (neck, thoracic and lumbar, but no head) MRI. Coming from Toronto, Ontario, Canada.

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Posted: 21 August 2013 10:21 PM   [ Ignore ]   [ # 9 ]  
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Dr. Diana - 04 August 2013 06:09 PM

YES! I had not only discomfort when moving my eyes, sometimes I felt like I was about to pass out! Really weird, at my worst (or when my intracranial pressure soars for a number of reasons) I hear a funny noise when I move my eyes from side to side (but not up and down). I described it to my neuro as sort of a ‘Chich-chich’ sound (always twice). He gave me ‘that look’! wink As a therapeutic optometrist, this is not something we learn in school! But as soon as I lowered my intracranial pressure (Diamox), it STOPPED. Thank Heavens. I had my first high pressure episode in years (due to inflammation from an injury, likely—just my guess). and the same thing started to creep in. Once again, when I got my intra cranial pressure under control, it stopped. I have no doubt this symptom is from high intracranial pressure.

I hear a swishing sound in my head, and my ears will fill up, start to ring, then empty.  I have not told any one this though.  Plus I get motion sick too.  We EDSers have all kind of freaky symptoms. wink. Yay us.
Shonda

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