I wanted to update anyone who may be interested headaches triggered when reading.

The neuro opthamologist I saw was the first doctor who thoroughly understood my headache issues, dysautonomia, and ehlers danlos hypermobility. Since I had not had a MRI in a few years, he ordered a MRI to rule out EDS related issues such as chiari, tethered cord, excess fluid, brain settling, and some other possible issues. Thankfully, my MRI was clear. My eyesight is also not the problem. The doctor said my headaches are nerve related (which is how my neuro has been treating me).

On my last visit, the doctor changed my effexor xr prescription to Pristiq, because he said Pristiq is better for nerve pain around the eye. So far I can tell somewhat of a difference. I have an appointment in two weeks for injections around my eye. The doctor is not sure yet what type. He talked about Botox, but I am somewhat leery as Botox treatment for headaches did not work on my daughter and regular Botox did not work on my sister. I think I will ultimately end up with a nerve decompression for one nerve above my eye.

The good news is that the doctor said that my EDS pain medicine nucynta is not contributing to my headache.

That is all I have for now. Baby steps but progress.

Thanks for the update.

Botox was once suggested for my headaches as well, but apart from not being covered by insurance (at the time), in researching, I found that they are a temporary fix at best. First, because they only last a few months (after which the treatment must be repeated) and again because patients build a tolerance to them, so after several sets of injections (everyone is different, so the number can vary) they don't work at all anymore.

I hope whatever you try is more efficacious than that.

Doc

I totally agree with you. There is a new research study out that indicates Botox is not nearly as effective as originally thought for headache treatment. So I don't even want to try the treatment. My sister was told she was among the 1% that Botox did not work on so I assume my family must have a metabolizing issue. It's happened several times with my sister, my daughters, and myself (EDS/dysautonomia related).

Once again, thank you for your input. Although this doctor is the first doctor to understand all of my health issues - EDS, dysautonomia, and headache issues, the doctor concerns me because he does not spend very much time with me. I have seen him for a total of 10 minutes but went through extensive testing on the first appointment. He recently left a prestigious medical school and went out on his own, so I assume he is increasing his caseload to pay for to offices. I am going to press for alternatives than Botox.

Thanks again!