November 10, 2013 at 6:20 pm #610TrachParticipant
I am new to this forum and hope someone may be able to help me. I am 49 and have HEDS. I had a C1/C2 fusion for atlanto axial sublaxation in August by Dr. Henderson. The surgery has given me my life back in many ways.
Besides the issues of dealing with EDS, I still have a trigeminal neuralgia type 2 headache. This headache is located along the top two trigeminal nerves but my symtoms are more like a migraine. So I am not sure if it is TN or not – my neuros/headache specialists differ.
My problem is that this headache can be triggered by reading. I have seen a neuro opthamologist and an opthamologist with EDS experience and other neuros for treatment. I have had every eye test imaginable. Every doctor says my left eye (the location of the pain) is the weaker eye, but otherwise my eye site with correction (I am blind as a bat) is fine.
I am trying to return to work on a part time basis and need to be able read fairly complex documents. I have tried all meds and am still taking several. (Trileptal, Topamax, Effexor, and Notrptyline (for sleep)). Botox helped but only lasted a few weeks.
I am trying to find a solution to this problem. There isn’t a lot of medical literature on this issue. It’s more than eye strain, because sometimes it happens first thing in the morning. Any suggestions would be greatly appreciated!
TrishNovember 11, 2013 at 7:54 am #4580BarbaraParticipant
I think possibly it’s the position of your head when you read that could be causing this. Is your head in flexion (chin down)? Try reading with your book, kindle or whatever on a book stand, so that it’s facing you, at eye level, see if that makes a difference.
Head in flexion can cause cerebro spinal fluid flow ‘obstruction’ problems which can lead to raised intracranial pressure, causing headache (especially occipital headache, low down at the back), also eye pain and it could interfere with the trigeminal nerve too.
(UK)November 17, 2013 at 12:18 am #4599
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