[nabs-l] Ocular Migraines

Tue Oct 11 03:19:04 UTC 2016

Kaiti,

Your headaches sound like something medical going on. Its probably to do 
with your shunt.
I am sure you would not strain your eyes constantly to cause headaches when 
you have some nonvisual techniques mastered. I think you read braille 
already and use jaws.

I don't know what to suggest. I hope your doctors can  treat your headaches 
and get  rid of them quickly.

Ashley

-----Original Message----- 
From: Kaiti Shelton via NABS-L
Sent: Friday, October 07, 2016 2:29 PM
To: National Association of Blind Students mailing list
Cc: Kaiti Shelton
Subject: Re: [nabs-l] Ocular Migraines

Hi Justin and all,

I believe these are different from eyestrain headaches, which I have some
experience with as well. I used to get those quite frequently as a young
child when I was being taught to read print instead of braille, but as you
mentioned they went away after I stopped heavily straining my eyes.
Occasionally, when I do   something that is especially straining I will get
them again, but these headaches are very different. They often just happen
randomly and for no reason at all. I can be sitting at the kitchen table
eating dinner with my family and my vision will suddenly cut out. It's also
happened when I've been  just walking around my house or outside, or
sitting in class. Unless there is a way to turn the vision I have off even
when I'm not using it for visually straining tasks, I don't think that it
makes much of a difference.  I do primarily do things in a non-visual way,
I know there are some tasks I do use a combination of non-visual skills and
my vision for, but I wouldn't say that I rely on it  or milk it for all it
is worth because those eyestrain headaches have taught me not to do that
when I don't have to and can rely on nonvisual skills I have been taught.
These are different, though, in how they feel in my head and in the
conditions that cause them.

I'm not dismissing your suggestion that I should go to a training center,
but it is not the best thing for me at this time. I am about to enter the
internship phase of my education which is required for me to take the board
certification exam. I think there are some valuable lessons to be learned
at training centers, but timing is different for everyone and some of the
finest   Leaders in our Nfb have not been rehabilitated at all.   so I'm
not taking it completely off the table, but it's not in the cards for me in
the foreseeable future as I work to complete my undergraduate requirements
and get into the workforce.

I also have another theory that these headaches could be caused by my
shunt breaking down. I know that the  Dura mattar  covering the shunt is
wearing thin and was told this summer that within the next 2 to 5 years it
will need to be replaced. Some list members have been writing to me
directly and have given me some more information that I didn't get from my
doctors about these types of migraines,   But I'm still trying to figure
out if there is a link between the breakdown of the covering over the shunt
and them or not.

On Wednesday, October 5, 2016, Justin Salisbury via NABS-L <
nabs-l at nfbnet.org> wrote:

> 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 <javascript:;>
> 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 <javascript:;>] 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
> <javascript:;>>
> Cc: Kaiti Shelton <crazy4clarinet104 at gmail.com <javascript:;>>
> 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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-- 
Kaiti Shelton
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