Hi. Early days since diagnosis. I have to wait until January to have a heart scan, other than that... nothing else in place just yet! referal to pain clinic... but living in England means waiting forever for anything t happen. I shall push to see what else needs doing. thank you for your response :)) x
Kerry I am and EDS 3 girl too and also have chiari. Have you had an MRI for your headaches? I am on Tramadol and Soma for the EDS pain yet I am always in some sort of discomfort regardless of what I do. I agree with Selma those videos are great and I have learned so much along the way from Selma and this forum. Hugs and prayers hang in there:)
Thank you for your welcome and your answer.
yes, Dx type 3. shall have a look at vids :)
Hi and welcome to the EDS group.
.I was 48 when I was dx'd with EDS and it was along with Chiari malformation, cervical spinal stinosis, tethered cord and a few other not so much fun things....
But I can answer ur question on the HA's and EDS, yes, they can be related to eds as eds can cause cerviocranial instability, something else I also have and it is this instability that causes the head to bobble around and cause the HA....
Did ur geneticist tell u which type of EDS u have? 3 ?
I have an issue with my ribs as well,...I feel it on my left but all xrays show an abnormality on my right,...I have yet to get to a EDS dr as I have to go out of state and I can not drive due to my other conditions....
Look at the videos posted at the top of this forum...the links will take u to many by Dr Driscoll and they r very informative.