Hi Graham,
No problems, I reply to my own posts all the time, if I’ve forgotten something, or find something else of interest. Lots of people look at the posts, even if they don’t answer them. I don’t answer them myself sometimes, even when I probably know the answers, usually because I’m too SHATTERED! (as many of us are on here).
1) Neuro-opthalmologists assessment: – first of all I went down to Vision Express where, at the same time as an eye-test, if you ask they’ll take a photo of your funduses and again if you ask, they will give you a password so that you can access them yourself, online (to examine, or to send to your GP, or other doctor). It’s the only place in the body where the blood vessels can be viewed directly and Dr Diana has told us what to look for.
My optician there examined the fundus photos with me, to look for changes in the ‘a/v ratio’, to look for any ‘tortuousness’ or ‘beading’ of the vessels and to look at the state of the optic disk. If they find any abnormalities, they should refer you on, via your GP, to a Neuro-Opthalmologist (NO) for further investigation. I went to see a local NO, within 15 miles, so one might be available in your area.
These things above can be easily overlooked by the optician, especially if they are not used to looking for them, so you may need to educate them on the nuances of EDS etc. You really need to review the photos with your optician and don’t be afraid to speak out if you see something they haven’t:
Normal A/V ratio = 2/3 to 4/5, so arteries are at least 2/3 the size of veins.
Abnormal A/V ratio = 1/2, so arteries appear to be just half the size of veins (aka 50%).
Tortuousness = they bend and contort in places, not running a smooth course.
Beading = where a vessel’s walls are not smooth and parallel along it’s length, they bulge out in places, like beads.
This check is vital because obtaining the correct treatment depends on these things being spotted in the first place. I think you will find a course of Diamox should help, as mentioned above.
2) My Neuro-otological assessment took place at the UCLH, when I went to see Prof Christopher Mathias, who diagnosed my P.O.T.S.
For the dizziness, it was a Dr Davies and her team who put me through a suite of tests and determined that I had Peripheral Vestibular Dysfunction (due to the head injury) It manifests very similar to how you describe it. I was put on Cawthorne Cooksey exercises but couldn’t ever finish the whole sheet, as I was too badly affected. They did help to some degree (that is the exercises that I could achieve).
I think your GP is your first port of call and, if they only allow one thing to be discussed per appointment, a simple way of approaching that is:
“Doc, why am I so disabled, here’s my list of symptoms” and hand him a copy of your symptoms list – let him sort it out!
Regards
Barbara
(UK)