SS since I was 15

[Aditya Salwan]

I am 24 years old male and I have been suffering with Scintillating
Scotoma ever since I was 15
I clearly remember the first time I had my SS, which was obviously not
a pleasant experience. I did not know
what this problem was or even how to describe it to someone. I told my
parents about it but
they dismissed it as a regular migraine. When I told my physician
about it he recommended to
take Tylenol (over the counter typical pain medication). I am
currently studying optometry and to be honest
one of my motivation to take upon my field of study was to figure out
what is exactly happening to me.
I personally have never met anyone with the same condition. It was
very difficult for me to explain someone
what I have been experiencing. I mean, how do you explain such visual
distortion to someone who has never
seen or heard about it before? My episodes spring about out of no
where. I think they occur in the days that I
wake up to a bright light, as in if my bed is facing a window and its
curtains are open. There could be other reasons
but I am not really sure exactly what triggers it. I can certainly say
that when it is triggered, it usually means that
it is the end of my productive day. Being a student does not really
help either. Especially during exam times when
your sleeping schedule is completely distorted. The worst is when I am
trying to study for a close-by exam and
it gets triggered. The visual defect lasts about 20-30 minutes
starting from the center of my visual field and gradually
becoming larger and moving onto my peripherals. After the visual
symptoms, I get a monster migraine. The only treatment
for my migraine so far has been sleep. I have to stop what I am doing
and just pass out as soon as possible. As I mentioned
before, it really kills my productivity for the day. After I wake up
the pounding migraine is usually gone but I can still feel
the headache being there. Sometimes I still have a small migraine
remaining even on the day after my episode.
I always fear that I might get SS on a day that I need to be alert,
like on a day of a major exam.

Anyways, I feel really good talking about it, even if it is online. I
just found out exactly what my problem is and it feels
great just talking about it to someone who knows exactly what I am
going through. I hope for a cure but I doubt something
like this will be curable over our lifetimes. If anyone is reading
this, I just want you to know that you are not alone...it sounds
cheesy/corny but that is how I felt and it is definitely not a good
feeling.
Please let me know your opinions and your dealing with SS.
Thanks,
Aditya

[Adania Berry]

I'm glad you don't feel alone anymore!  

I've been listening in on this group for a while, but never responded.  I'm sure there are plenty more of us that just stay quiet like me, but you're definitely not alone.  When I was in college (seems so long ago now), I had bad anxiety like you describe because of it.  I was afraid of going anywhere in fear of getting one.  But the older I got, the less I worried.  I've been having these for 20 years, and I figure if they haven't killed me yet then it must not be something to worry about!  

Just go about your normal life, don't stress about it, and if you do get a migraine in the middle of something important, you'll find that people are far more understanding than you realize.  I've come to be thankful for the SS, as it gives me a nice 30 minute warning or so that I'm going to get a migraine, so I have time to get myself to a dark quiet place (hopefully my bed).  

Just hang in there, it gets easier!  

---

From: Aditya Salwan <aditya...@gmail.com>
To: Scintillating Scotoma <scintillat...@googlegroups.com>
Sent: Tuesday, April 17, 2012 10:27 AM
Subject: [scintillating-scotoma:211] SS since I was 15

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[Andrew Hewitt]

Welcome Aditya and thanks for your words. Your episodes are exactly like mine, 20-30 minutes of a light show in the eyes moving around and then a crippling migraine. Sleep is the only thing that chases it away and if I don't eat or drink then I'll wake up with the migraine still though milder. I suspect as Adania has said that there are many here who are silent and just read the posts. You're not alone. Might I suggest reading through past posts and see if anything rings a bell for you. A lot of ideas as to possible triggers have been put forward as well as possible cures so you might find something that works for you. I manage mine somewhat by drinking water/sports drinks and avoiding caffeine, certain foods like nuts, raisins, aged cheeses, etc. and most importantly trying to get regular sleep and enough of it. I wish you all the best and hope that in your study of optometry that you'll figure out a cure for us all.

- Andrew

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[aditya...@gmail.com]

Hello everyone,

Thank you so much for replying back with your experiences with SS. I can easily say that I feel a lot better and more confident with my SS knowing that others have experienced it to the same degree that I have. I am definitely not alone in this and just knowing that feels amazing. My most recent episode occurred about 3 weeks ago and as soon as I saw the visual distortion I was fortunate enough to go straight to bed. Once I had an episode while I was cramming for an exam. I gave it my all fighting the visual distortion and migraine however, after a couple of hours I had another episode of SS. I guess for my case sleep is the only option to alleviate the migraine. In other posts I've noticed people mentioning electrolyte balance, dehydration and light. The precautions that I've been taking is making sure that I wake up to soft light in my room (having my curtains drawn) and for the past 2 weeks, I've been drinking an average of 1 gallon (4L) of water daily. I'm not sure if the water helps but I don't see a harm in trying. Its fortunate that SS doesn't strike too often but the lack of its frequency makes it difficult to pinpoint a specific cause. I would urge you to see if your nearby university hospital's neurology or ophthalmology department is conduction any research on SS or any neurological abnormalities similar to it. Since we all know how infrequent episodes could be, any bit of help to researchers could possibly make a huge difference.

I appreciate the replies and support I received from Hugh, Adania, and Andrew. Your words were very kind and assuring.

Thanks,
Aditya

Sent on my BlackBerry® from Vodafone

---

From: "williams, hugh" <willia...@gmail.com>

Date: Wed, 18 Apr 2012 09:55:54 -0400

To: <aditya...@gmail.com>

Cc: <scintillat...@googlegroups.com>

Subject: Re: [scintillating-scotoma:213] SS since I was 15

Aditya,
Your post must be speaking to the "silent" readers of the group because I too have been reading but haven't posted. I began having episodes in my mid teens and doctors just said I was getting "migraine variants" and there was no treatment aside from over the counter pain meds. I have episodes six or seven times a year. I have tried to locate triggers but unfortunately keep having "spoilers" when I think I may have isolated something. My headaches after the lights vary from moderate to severe but I have learned that I can buffet them with Tylenol or Excedrin if I take it at the onset.  I understand your difficulty to explain SS to others who haven't experienced it. Describing what was happening to me was very difficult. I am 41 now and it has been within the past two years that I discovered that scintillating-scotoma  was what I was experiencing. I was able to show an animated image from the internet to my wife to show her what I was seeing. It was more of a relief for me than I realized just knowing someone else knew what was happening. I had never met anyone with SS either and still haven't met anyone in person. Anyway I guess I just look at it as something that is going to happen from time to time. it's out of my hands at present, so there is no need in worrying about it when it will happen and deal with it when it does. Good luck in your studies and like Andrew wrote maybe one day you'll relieve all of us.

Hugh

[williams, hugh]

On 4/17/2012 7:15 PM, Andrew Hewitt wrote: