I have a horrible time with lighting....can not use florescent lights and the gov stopped production of incandescent bulbs.....when I was younger, I would not go out at night bcuz the lights hurt my eyes so much....I do not go out at night much any more and I no longer drive......but I do know what you at talking about. My eye Dr had me get tinted glasses to wear when on the computer and inside to help with the light issue...have you tried them?
As for your " I don't have Chiari, but never say never" statement....I said the same about EDS...and found I was wrong....we never can say never until we rule it out.
Another thing or person to look into is Dr Dianna Driscoll and her Driscoll theory ....my understanding is those with EDS tend to over produce histamine...which can cause reflux due to PND....so instead of typical reeflux meds a H2 blocker might work better....I now take a H2 blocker along with anti histamines and my reflux issues are under control or calmer then they were....
I have talked with so many EDSers that have the allergy links....med issues...etc...so I am not alone in this and neither are you.
Hi Selma, thanks!
No, I didn't have a MRI of the cervical spine. Probably my EDS specialist doesn't consider possibility Chiari Malformation in my case. Honestly, I don't think I have CM, but never say never! I have GI issues too.
I have a lot of issues with meds, in fact I cannot take anything. So, imagine my problems in dealing with pain! But that's fine, I don't like to complain :) So, you connect your "allergy" problems to EDS? Ok, that's nice to hear...I mean, I have been looking for a diagnosis since I was 8, now I am 33 and I would like to be able to find a name to all my health problems and just go on with my life.
This opinion that you have, is in line with my basic doctor's opinion and it makes sense if one thinks that almost everything in our body is made of collagen...so my skin, mucuses etc can be very sensitive.
One more thing, my eyes literally burn if exposed to artificial light (I am photophobic but I am talking about smth different now). So I must wear sun glasses almost everywhere I go, expect if the bulb is inside a lamp and the lamp is thick. Have you ever experienced something similar?
Hi and welcome to the EDS forum.
Yes but I have a related conditions as well...it is Chiari Malformation....and GI issues as well as confusion and sleep issues are also a symptom of it.
Have you had a MRI of the cervical spine?
I was told that EDS can indeed cause allergy like issues not only with food but meds as well....and I have had quite a few....including issues with odors and chemicals....some of our issues may not be considered an allergy but has a similar effect....JMHO
I have not had the shedding of my skin tho....but have had a few of the same things you have had...since I do have more then one condition it is hard to know which condition it is from....
Have you had a MRI of the cervical spine to make sure you do not have any other issues?