Hi! yes, I'm here and can chat
My whole problem is explained in this document: https://docs.google.com/document/pub?id=10nCd6ovQfYiZNBtfIuE0nNrUmGnG9D3Tr6WHcDHi7l8
To summarize, I have a headache *every*single*day* that when not treated properly with prism eyeglasses also comes with nausea, brain fog and occasional electrical shocks
I am having difficulty getting a prescription more than 20 diopters... right now I am using eyeglasses with 8 diopters built into each lens, and a 4 diopter fresnel prism over the right lens. It appears to have lessened my symptoms for the moment, but they've been "expiring" much more quickly lately
yes, it feels like a never ending search for a stronger prescription of prism eyeglasses
No one I've spoken with understands why I never see double vision
I have seen one optometrist and three ophthalmologists
I am a software programmer, so yes, I use the computer often. However, the problem is not isolated to my computer. I also have problems taking a shower (because I can't wear my eyeglasses) and talking to people.
Oh... and a SEVERE problem with any sort of transportation vehicle.
Riding in any sort of vehicle will often knock me out for half a day
Severe motion sickness that also induces headache
If I keep my eyes closed I can often minimize or eliminate the chance of symptoms occurring. But lately, as I've gotten worse, keeping my eyes closed will only kinda make things better. I still get very very ill.
Showering effects me the same way. I try to not open my eyes while in the shower, but for some reason I still get very very ill.
If I don't use prism eyeglasses, motion sickness knocks me out big time. With eyeglasses, I just have to deal with the headaches. But now that I've reached up to 20 diopters, the motion sickness is taking its toll on me again.
I'm have a *massive* problem getting anyone to even treat me as a patient let alone offer treatment options :(
Two ophthalmologists said they couldn't do anything for me
The other who diagnosed me with exophoria doesn't have time to treat me. He can't fit me in his schedule. I presume I am just not a priority because I don't risk vision loss.
He referred me to another ophthalmologist but she won't see adults except for once a month and she's booked for months
I can't find any :(
I tried to see a neuro-ophthalmologist who has been doing research in eye muscle disorders, but she wouldn't see me, either
She referred me to the standford headache clinic but I haven't heard anything since
She didn't say... just had her assistant call me and tell me that she thought the headache clinic would be better
I do have an appointment with a neurologist, but it isn't until August 3rd
I'm trying to get someone at the standford headache clinic to answer the phone... and the UCSF headache clinic to answer the phone and return my messages, but neither will
I'm in San Francisco
I have another referral out to another neurologist but I can't get through to get an appointment. The last they said was that they'd call me back in an hour or two to schedule an appointment but never called back
but balancing my pain and trying to earn money, it's been so hard to find time between 9-5 (and not lunchtime!) to call everyone
The neuro-ophthalmologist who referred me to the Standford Headache Clinic was the Directory for neuro-ophthalmology at Standford, Y. XXXXX XXXXXao
The ophthalmologist who diagnosed me with exophoria was Dr. Creig Hoyt of the Beckman Vision Clinic at UCSF
Dr. Hoyt referred me to Dr. Alejandra De Alba also of the Beckman Vision Clinic at UCSF... she only sees adults once a month
Yeah, I tried to see Dr. Horton, but for some reason I saw Dr. Hoyt instead. I don't know why that happened.
Ok, I can try again
I don't know why it happened. I had explicitly asked for Dr. Horton but saw Dr. Hoyt instead for some reason.
Ok, I can try
So, do you have any idea why I would never see double vision?
<nods> So weird. So very weird. It'll be nice if I can someday understand what is going on with me.
I'll let you go then. Have a good night.
Any ideas of what could cause eye-triggered headache, nausea and brain fog? I have a full write up of my condition that I have been providing to doctors. I have made it public on Google Docs here: https://docs.google.com/document/pub?id=10nCd6ovQfYiZNBtfIuE0nNrUmGnG9D3Tr6WHcDHi7l8 The only diagnoses I have received is exophoria, a type of strabismus. Treating my exophoria does reduce my symptoms, but does not eliminate them -- and, my ailment is starting to become more severe than the treatment of exophoria can handle. Other doctors are doubtful that my decompensated exophoria is the cause for all my symptoms and believe instead that another underlying condition is exasperating my exophoria. The link I provided above goes into detail the symptoms I have been suffering. To summarize, I have severe headaches, motion sickness, brain fog, fatigue and even occasional electric shocks. This came on abruptly on January 21st, 2012, and has persisted every single day since then. The symptoms appear to be triggered by the usage of my eyes, and treatments directed at my eyes have helped to reduce the severity of my symptoms. However, I am getting worse, and no one has any idea how to help me. I am very debilitated at this time, unable to work even part-time, and I am, well, quite miserable. The only doctors I have "on my side" right now are a nurse practitioner and my psychiatrist. Other specialists have not been helpful. Two ophthalmologists have told me they cannot help me at all, and another ophthalmologist does not have time to continue seeing me because I am not a priority. One neurologist has told me "to stop using the computer", and I am having trouble securing appointments with other neurologists. I am looking for direction that my nurse practitioner or psychiatrist can use to help find me a proper diagnosis and/or treatment for my problem. I live in the San Francisco Bay Area, so even pointing out specific doctors who could help me would be tremendously helpful.
Optional Information: Person's Gender: Female Person's Age: 30 Already Tried: 6, 8, 10, 12, 14, 16, 18, 20 diopter prism eyeglass prescriptions. MRI Clean Vicodin helps headache pain if taken as soon as pain is felt. Fioricet does not work. Lorazepram helps to minimize and occasionally eliminate nausea. Can use odancetron if needed for nausea. Closing my eyes almost always works to stop pain. But lately I have been waking with pain.