[nabs-l] Ocular Migraines

[Justin Salisbury]

Hi Kaiti,

I have a lot of those same things you have: a shunt, glaucoma damage to optic nerves, etc. I used to get tons of really bad headaches, too. This, I am proud to say, is almost completely a past-tense kind of thing now. The thing that made the biggest difference for me wasn't really a medical intervention, surprisingly.

For eight years of my life, I was a blind person who depended heavily on my residual vision. It caused a lot of strain on my eyes, my neck, and my back. I was always juicing my vision for everything it was worth, and I kept getting by. 

Then, I went to training at the Louisiana Center for the Blind. Under sleep shades for 9 months, I learned how to do things non-visually, but I also learned to trust myself to use the non-visual techniques and got over the discomfort of sighted people noticing that I was doing things differently from them. As these things all happened symbiotically, I became more and more efficient with nonvisual techniques. After I hit the point of about 6 months into training, I started to realize that I wasn't paying attention to my vision so much anymore. When the sleep shades weren't on, I was still using those nonvisual techniques, which were now more efficient than the old visual ones. Since I was almost never using my eyes, this took all the strain off of them, as well as my neck and back. I experienced a decrease in my headaches, and I even found that my vision got a little bit better because my eyes finally had a break. 

I have heard your name a lot over the past few years, but I don't know if I've heard of a training center attached to your name. If you haven't gone to one of the six Structured Discovery training centers, it might really help you out like it did for me.

Take care,

Justin

Justin M. Salisbury, MA, NOMC, NCRTB, NCUEB
Opportunity Ambassador
National Federation of the Blind
Email: President at Alumni.ECU.edu
LinkedIn: https://www.linkedin.com/in/justin-salisbury  
 
"Education is not the filling of a pail, but the lighting of a fire." 

William Butler Yeats


-----Original Message-----
From: NABS-L [mailto:nabs-l-bounces at nfbnet.org] On Behalf Of Kaiti Shelton via NABS-L
Sent: Sunday, October 02, 2016 8:27 AM
To: National Association of Blind Students mailing list <nabs-l at nfbnet.org>
Cc: Kaiti Shelton <crazy4clarinet104 at gmail.com>
Subject: [nabs-l] Ocular Migraines

Hi all,

Sorry for this being slightly off-topic, but I wasn't sure of any other way to ask for information on it.

I've had some pretty bad headaches since my early teen years, but every time I brought it up to my pediatrician (who is really good and who otherwise I really like), she made it sound like they weren't frequent or severe enough to cause major concern.  There was talk of sending me to a neurologist at one point, but she never went through with it and wanted me to rule out the possibility that the headaches were sinus-related first, which I have done.  While I do get sinus headaches, especially in the Spring, I can usually tell the difference between them and my other headaches by how they feel.  Further, these other headaches are usually there for several hours and aren't responsive to ibuprofen or Tylenol, and typically knock me out or leave me feeling lethargic afterwards.

Within the past year I started having instances where the vision in the eye that has some sight would cut out for a second or two, then come back.  This usually happened before or after a migraine headache, but sometimes it happens for no good reason at all.  I do know that the shunt used to keep my Glaucoma in check is starting to wear down and will need to be replaced in the next several years, but when I told my retina specialist about these issues he was pretty confident that the visual disturbances I was having are caused by ocular migraines either in my eye or near the optic nerve.  I also see a Glaucoma specialist, and he noted around the same time I talked to my retina doc that everything looked as stable as it can be aside from the shunt he put in, but I read that ocular migraines are also experienced by 2/3s of Glaucoma patients who have taken some damage to their optic nerves as I have.

I'm wondering if anyone else has ocular migraines and might have more information than I do.  I've been reading up on them, but obviously I'm a bit hesitant to take everything I read on Web MD or from the Mayo Clinic archives as something that's happening to me.  Again, I know this isn't academic-related and am sorry for veering off-course, but any information would be great.

Thanks,

--
Kaiti Shelton

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