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I’ve been experiencing splitting headaches the past few weeks. One morning after a particularly painful headache I woke up to discover several promounced red blood vessels in both eyes. The white parts of my right eye are now graying, which I’ve read is blue sclerea. I am seeing lots of floaters and the eye really hurts and feels as if there’s a lot of pressure in (or behind?)it. Does this sound familiar to anyone? Will the gray go away?
It was hurting so badly, I saw a GP at urgent care who referred me to an eye doctor I’ll see first thing Monday. This GP was much better than my own, he refered me to cardiology for my orthostatic intolerance and even talked to me about EDS after seeing I am hypermobile. Total 180 from my normal GP. I’m feeling more hopeful that I may be inching closer to a diagnosis!
I’m having the pressure pain this evening in both eyes, usually Diamox keeps it under control but not tonight. Mind you, I’ve just started a new batch of Diamox and I know they are having manufacturing problems here in UK, which has made them so hard to get hold of, so maybe the drug’s not up to standard.
I wonder if the increase in eye pain has something to do with this unusual weather we’re having in the UK at the moment, maybe the air-pressure can influence it.
My sclera are not blue but I have woken up with rather bloodshot whites of eyes and sometimes they look slightly yellowish brown, usually when I’m feeling quite bad.
Barbara
(UK)Hi Robynne, I want your doctors. 😉 I’m sure they’ll check you over closely for everything from a blood clot to a carotid cavernous sinus fistula. Do you “see” your pulse, or hear it sort of whooshing in your ears? Are you on Diamox? Honestly, I’ve never heard of someone’s blue sclera getting suddenly worse before. Interesting! 😉 BARB!!! So great to “see” you! Substandard Diamox, huh? That’s lousy. I let myself get a bit too acidic lately, and it just reminds me all over again how important it is for us to keep that pressure off! Yikes. Big hugs…
Hi Dr. Diana,
Well, my hope bubble has again burst! The opthamologist I saw yesterday was HORRIBLE. After looking over my medical record he came into the exam with his mind made up about me. He told me no doctor is going to be able to help me and proceeded to ask me very inappropriate questions including, “Oh, so you’re married? How’s that going? Do you like your husband?” He told me that I was stressed or anxious and making a big deal about small symptoms. He was also 40 minutes late for the appointment (I was his first patient) and said nothing about being late. He only spent about 10 minutes on my eye exam, during which time he told me that my eyes were dry and that my eyelids were floppy because I rub them too much (I don’t). He told me the pain in the eye is normal and that headaches are nothing to worry about. I’m going to try to see if I can see the urgent care doctor again since he was really on it. This experience also taught me to NEVER go in an appointment alone. I think if my husband was there Mr. Creepy Ponytail doctor would not have said half the things he did! I go to cardiology tomorrow for my orthostatic intolerance. I really want a tilt table test so I can show them what happens when I stand for more than a few minutes.
Opps, forgot to add….
Yes, I do see my pulse. Usually in my stomach. I do not have whooshing sounds in my ears, but I have frequent ringing in the ears, especially as I’m trying to fall asleep.Hi Dr. Diana,
Well, my hope bubble has again burst! The opthamologist I saw yesterday was HORRIBLE. After looking over my medical record he came into the exam with his mind made up about me. He told me no doctor is going to be able to help me and proceeded to ask me very inappropriate questions including, “Oh, so you’re married? How’s that going? Do you like your husband?” He told me that I was stressed or anxious and making a big deal about small symptoms. He was also 40 minutes late for the appointment (I was his first patient) and said nothing about being late. He only spent about 10 minutes on my eye exam, during which time he told me that my eyes were dry and that my eyelids were floppy because I rub them too much (I don’t). He told me the pain in the eye is normal and that headaches are nothing to worry about. I’m going to try to see if I can see the urgent care doctor again since he was really on it. This experience also taught me to NEVER go in an appointment alone. I think if my husband was there Mr. Creepy Ponytail doctor would not have said half the things he did! I go to cardiology tomorrow for my orthostatic intolerance. I really want a tilt table test so I can show them what happens when I stand for more than a few minutes.
Eww… Creep alert, and ‘not all that smart OR caring’ alert!!! I’m sure this doctor knew nothing about EDS! Lordy… Are you SURE you can’t make it to Texas? I have a specialist with me who will help with our hydrocephalus, if needed. A TTT is a GREAT objective measure (if performed correctly). “Do you like your husband?” Are you kidding me? *eyeroll* Hang in, my friend.
Thanks, Dr. Diana! These feelings of “pressure” in my head and eyes are pretty bad. Some days it hurts even to wear my glasses (perhaps because of sinus pressure). I am going to try Zyrtec everyday. I already give it to my dog for his allergies! In learning about the theory, I keep thinking about my little brother. He had a very large head as a baby and an unexplained seizure at age 3. He has a very EDS body type, the longest hypermobile fingers ever! If I end up having EDS I am going to suggest he get checked, too. I may just be able to make it out to Texas! Interested in learning more about the specialist you mentioned. 🙂
Thanks, Dr. Diana! These feelings of “pressure” in my head and eyes are pretty bad. Some days it hurts even to wear my glasses (perhaps because of sinus pressure). I am going to try Zyrtec everyday. I already give it to my dog for his allergies! In learning about the theory, I keep thinking about my little brother. He had a very large head as a baby and an unexplained seizure at age 3. He has a very EDS body type, the longest hypermobile fingers ever! If I end up having EDS I am going to suggest he get checked, too. I may just be able to make it out to Texas! Interested in learning more about the specialist you mentioned. 🙂
Well, please holler if you need help with your pressure and can come to Texas! Wow, I wonder if you can come up with your brother’s head circumferences, weights and lengths from approximately birth to approximately 15-18 months? That helped me prove what happened to my kids! They continue to benefit from Diamox today. 😉
Hi Dr. Diana,
Well, my hope bubble has again burst! The opthamologist I saw yesterday was HORRIBLE. After looking over my medical record he came into the exam with his mind made up about me. He told me no doctor is going to be able to help me and proceeded to ask me very inappropriate questions including, “Oh, so you’re married? How’s that going? Do you like your husband?” He told me that I was stressed or anxious and making a big deal about small symptoms. He was also 40 minutes late for the appointment (I was his first patient) and said nothing about being late. He only spent about 10 minutes on my eye exam, during which time he told me that my eyes were dry and that my eyelids were floppy because I rub them too much (I don’t). He told me the pain in the eye is normal and that headaches are nothing to worry about. I’m going to try to see if I can see the urgent care doctor again since he was really on it. This experience also taught me to NEVER go in an appointment alone. I think if my husband was there Mr. Creepy Ponytail doctor would not have said half the things he did! I go to cardiology tomorrow for my orthostatic intolerance. I really want a tilt table test so I can show them what happens when I stand for more than a few minutes.
Robynne,
Please report that doctor to the state board of medicine. That is so creepy and inappropriate to say the least. Plus he has all your personal information. That is an abuse of his license, and on top of that he clearly does not know what he is doing.
ShondaHonestly, I’ve never heard of someone’s blue sclera getting suddenly worse before. Interesting!
I think I have already reported that I don’t have blue sclera, well guess what – I DO !! – but it’s only a recent thing. Believe me, I would know if I’d had it before, as I have been photographing and videoing the weird things that happen to my eyes for years.
Another strange thing about it, is that it’s only one strip of one eye. I heard an explanation of blue sclera (maybe from your book!) as being a thinning of the top layer, where the eye is white. So is this perhaps another collagen related thing ?
Regards
Barbara
(UK)Honestly, I’ve never heard of someone’s blue sclera getting suddenly worse before. Interesting!
I think I have already reported that I don’t have blue sclera, well guess what – I DO !! – but it’s only a recent thing. Believe me, I would know if I’d had it before, as I have been photographing and videoing the weird things that happen to my eyes for years.
Another strange thing about it, is that it’s only one strip of one eye. I heard an explanation of blue sclera (maybe from your book!) as being a thinning of the top layer, where the eye is white. So is this perhaps another collagen related thing ?
Regards
Barbara
(UK)Hi Barbara.
How are you? My kids and I have blue sclera, but like you I did not notice it until this year. I find there are times when it is more obvious than others. Like when I have a bad headache. Maybe it is because my eyes are more blood shot. I brought up the kids blue sclera to their Pediatrician, mind you this is before I knew I had Ehlers-Danlos, and he told me that it was common occurrence in kids because they have thin sclera. I was fine with that until I learned about eds. Plus, combine it with all their other symptoms, and I know it is more than the kids have thin sclera. So I think your theory is right, and it is a collagen thing. Plus blue sclera are seen a lot of other connective tissue diseases.
Shonda
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