Scintillating scotomas of increasing frequency - see a doctor about it?

[Richard Lytle]

Hello all, I just found this group and hoping to get some advice
here. Would you seek medical advice in my situation?

I first started getting scintillaing scotomas about five years ago and
they were very infrequent - maybe twice a year. However, lately
they've become much more frequent -- I've had probably twelve or
fifteen in the past two months (twice today, actually). No headache
or other side effects, just the visual aura for about a half hour.

From the limited research I've done, it seems there really is no known
cause or cure for these so seeing a doctor might be fruitless.
However, the increasing frequency concerns me a bit. Would you see a
doctor in my situation? And if so, what would you expect the doctor
to do or say? I am a 36 year old otherwise healthy male.

Thanks for any advice.

[Phluffhead]

Hi, I have some recommendations. I am 38 healthy male and had SS start
when I was 37 and it was occurring almost daily, sometimes a couple
times each day. Now I have it less than once a week and I believe it
is due to the following actions, and still occurs when I stray from
following these.
1. Stop all caffeine.
2. Eat 4-5 meals a day. Eat breakfast for sure and try to always eat
every few hours the rest of the day.
3. Stay hydrated. My occasional weekly SS is usually the day after
drinking alcohol.

When I get that feeling it is about to happen, I take 2-3 advil and
try to relax and I have been able to avoid the event form starting or
just reduce its level and time length.
I have found dr's worthless, and so have my relatives with similar
conditions. We have all had numerous tests and visits with no results.
Keeping a log of everything you eat and drink and when ss occurs may
help you find other triggers you can avoid.
Good luck.
Chris

[Kevin]

My doctor advised that I get my eyes checked. This seemed like a very improbable cure but it was extremely effective and within six months I had my last CSD seizure. That was three years ago. 

Scintilating Scotoma is a self-visible effect of Cortical Spreading Depression of the Occipital Lobe (I think of it as a brain cramp). 

I'm not a doctor but I certainly did some research on this after watching my head become invisible in the mirror one day.

My own thoughts on the matter is that excess nuero-transmitter chemicals build up in a small area of the cortex (for visual migraines it's usually around the fovea processing area). At a certain overload point agitated neurons dump out their sodium loads which then overloads nearby neurons causing them to do the same. This causes a chain reaction of depolarization that spreads radially across the cortex. We can see this visually as a growing stair stepped pattern of black lines with glowing colors emanating from them and reduced vision in the center as the visual related neurons try to recover oxygen and nutrients from their hyperactivity.

Lots of things can trigger these and I think we become more susceptible to them as we age. In my case, I think that optical changes in my eyes strained my visual cortex neurons and they became more sensitive to blood oxygen changes, nutrient supply, nuerotransmitter chemical buildup like glutamine, lack of sleep and emotional stress.

Anyway, good luck and definitely ask your doctor.

[penny5...@gmail.com]

Hi. I'm in my 30's and have been having "SS" for about 10 years now. I honestly suspect it's nothing to worry about, a few people I know have it regularly,
besides there are experiences all over the internet.... It's certainly freaky, at first especially, but I suppose when doctors are so expensive and clueless it's best to just relax.... Actually I think it's really cool looking and interesting, though it can be tiring and make you stop what you're doing for a moment.... Anyway, I feel lucky there's no pain involved, at least yet. Seems to me it has to do with a lack of blood flow to the brain-- I've been aware for years my circulation's not tip top, plus my hormones are perpetually out of whack, which is another thing that may be related. If I could take my own advice I'd start eating lots of raw greens, find a high-exercise job and quit drinking. Maybe in another decade....

[Boris Mezhibovskiy]

Not to alarm you or anything, but I used to have no pain involved. Lately an episode is followed by one or two days of mild headache and medium nausea. Basically feel crappy for a day or two after.

On Sat, May 3, 2014 at 1:56 AM, <penny5...@gmail.com> wrote:

Hi. I'm in my 30's and have been having "SS" for about 10 years now. I honestly suspect it's nothing to worry about, a few people I know have it regularly,
 besides there are experiences all over the internet.... It's certainly freaky, at first especially, but I suppose when doctors are so expensive and clueless it's best to just relax.... Actually I think it's really cool looking and interesting, though it can be tiring and make you stop what you're doing for a moment.... Anyway, I feel lucky there's no pain involved, at least yet. Seems to me it has to do with a lack of blood flow to the brain-- I've been aware for years my circulation's not tip top, plus my hormones are perpetually out of whack, which is another thing that may be related. If I could take my own advice I'd start eating lots of raw greens, find a high-exercise job and quit drinking. Maybe in another decade....

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[jaimer...@gmail.com]

Increase magnesium intake. Almonds are a good source. Cut down on caffeine, sugar, soft drinks. Get enough rest. Don't over do it on sex.
Drink plenty of water and do not skip meals. When I have done all of the above it reduces the frequency if the episodes. Also helps to go on an antiinflammatory diet. There is a good one here.
http://www.drweil.com/drw/u/ART02012/anti-inflammatory-diet
Join my forum on facebook:
https://m.facebook.com/groups/1492127194350122?view=permalink&id=1492128844349957

[kfot...@gmail.com]

I was 67 when I started getting the SS 3 years ago and when after 3 months as they got more frequent, I made a note of each on the calendar. Time it started and whether the black edged white triangles arc formation are showing on the right hand side or the left.  It starts as a central blur for about 5 minutes and then the expanding arc increases in size for the next 20 minutes, then fades away.  Around 4/5 hours later I get a head pain that occurs on the opposite side of the arc. The head pain is not a migraine, just a painful throb when moving about.  This lasts on average for 30 hours.  I now get a SS every 10 days on average and just live with it.  Some SSs occur in my sleep because I wake up with head pain.  I woke once in the middle of the night and whilst waiting to return to sleep a SS happened. On rare occasions I have had 2 SSs one after each other.  I have not found any connections with food, drink or lifestyle.  I have read that there is a connection with the trigeminal nerve and I have only recently discovered this after having sudden severe tooth pain whilst chewing. So after further research I discovered there is a connection.  I have never seen my GP about this or take painkillers for it.  

[lauraf...@gmail.com]

Hi! This was ten years ago but hope you can answer me :): I used to see SS daily last year, since I didn't use to get much sleep. it was activated by sunlight, always driving at exactly the same spot on the road (weird!), and now it comes and goes sometimes. Do you think seeing it daily for a long time is osmething to worry about'?
Thanks a lot :) 

[rdal...@lsmsa.edu]

The cure for me has been to drink a glass of water each morning. This has avoided my daily episodes. When an episode starts, a glass of water will help end the episode.

[David Shapwe]

Hello Richard,

Thank you for the detailed information on your experience with scintillating scotomas.  Go for it if you have the funds.  I don't have any recent experience with an ophthalmologist.  Please share your ophthalmologist's advice, treatment, opinions, etc if you visit one.

I went to an ophthalmologist about 25 years ago, trying to determine the details of scintillating scotomas.  The ophthalmologist did not have any comments.  They shrugged their shoulders and scratched their heads, so, to speak.  I had a similar experience about 10 years ago.

Many people experience scintillating scotomas at various frequencies and various durations.  Your experience is  uncommon in frequency.  I've never experienced  SS's twice a day.  Anyone?  Please describe your SS as to the coverage of your field of view.  For instance, can you read or write while enduring a SS?  Was your vision occluded 10 %, 20 %, 80 % ?   

I suspect there has been a change in your diet or health, maybe extreme stress.  A sudden increase in fat intake appears to increase the potential of experiencing SS's.  There seems to be no difference in the type of fat consumed (healthy as in nuts or unhealthy as in fried foods and chips).

Empirical evidence collected leads me to believe a microbe is responsible for SS's and associated migraines.  The microbe is a fat lover.  A significant portion of the planet's population harbors the suspect microbe (an educated assumption, but based on limited data).  An individual's physiology and anatomy determines whether or not the microbe causes SS's.  There are assumptions SS's are due to brain abnormalities.  The assumed abnormalities are only symptoms or effects of the microbe's presence (my logical opinion).   

Face the sun for 5 minutes with your eyes closed and walk briskly for 5 to 10 minutes.  Your SS will cease shortly.  You are not alone, as you can see on this group.

Take it easy,

David C

[Nana Royer]

It is interesting to see the varied experiences people have with SS.  Mine began after the birth of my first child when I was 24.  At first I feared I had a brain tumor until a visit to the doctor revealed that it was a migraine.  I have had SS with varying degrees of regularity for 52 years now.  The scotoma is reliable,  sometimes, with numbness of fingers, expessive aphasia as well as receptive aphasia.  When the aura is entirely gone is when I get the headache,  though as I've gotten older the pain is not like it was when younger.  Sometimes I have scarcely any pain at all.  I've tried keeping a diary; however, I can get SS without definable predictions.  Has happened after being outside and running while cold, occasionally after flashing lights, rarely in situation of stress;  last night in the middle of the night when I awoke to go to the bathroom, or getting up in the morning.   I do drink coffee and wine; however, I can go for a couple months without any symptoms despite my intake.  I exercise and eat healthy.  One year recently I had 16 episodes, a lot for me and asked the eye doctor about it--but he wasn't concerned and couldn't tell me anything new.  I'm trying to drink more water as I'm suspecting that dehydration may play a part.   Because the prodromal symptoms seem to mimic stroke, I'm worried that I may be more prone to a stroke, though from what I've read and heard there's no correlation.  

I continue to be open to new information.

[Dave O'Reardon]

Hi nana...@gmail.com,

So much of what you said resonates with me: 

"When the aura is entirely gone is when I get the headache,  though as I've gotten older the pain is not like it was when younger.  Sometimes I have scarcely any pain at all", "Has happened after being outside and running while cold"., "I do drink coffee and wine; however, I can go for a couple months without any symptoms despite my intake.  I exercise and eat healthy", "I'm trying to drink more water as I'm suspecting that dehydration may play a part".

I seem to get more episodes when I'm doing a lot of running and/or when I skip a meal or eat late. I'm begining to suspect dehydration and/or low blood sugar.

David

[David Shapwe]

I started getting migraines prior to experiencing SS's.  When I began getting SS's I did not see a connection or correlation to the occurences of my migraines.  This was about 30 years ago.  The SS's were infrequent, maybe once a month to a few times a year.  The indole based migraine based medicine worked very well on my migraines.  My migraines dissipated once I attained a more stress-free lifestyle.  Infrequent SS's continue, once or twice a year to monthly. 

[kfotocam]

Update from my first report of Jan.2019.  As I could not find any connection with food or drink, I furthered my research and discovered that having low levels of magnesium trigger migraines.  Most diets do not provide sufficient magnesium, so taking a supplement long term is ideal.  The recommended dosage is 100mg daily.  So I bought some 100mg capsules of magnesium glycinate in mid 2019 and my SSs have become less but  often there is no pain now.  Plus the magnesium assists with other bodily functions. 

[Tashina Knight]

56, Female. I get 4-5 SS every year. I track them reliably in a diary including time of day, what I had eaten, what side they are on; sometimes I draw them. I do not and have never had regular migraines, although I get slight headaches above my eyebrows after an SS. I am pretty sure mine are caused by hormone fluctuations as I can pretty much make one happen by changing my dose of of estrogen (I have some estrogen gel I can add and using it once every few months almost always triggers one). Just wanted to add to the information that I have taken SloMag (slow release magnesium) for several years straight (keeps my heartbeat more regular and I am hyper aware of it, so this is helpful) and while I can't comment on its effect on headache-migraines, I can say it has appeared to have zero effect on my personal SS, duration or headache after. I haven't found any connection at all between SS and my diet or even time of day. I woke up in the middle of the night with one once. Only hormones have been a reliable indicator for me, although there may be other factors I haven't figured out yet, so I like to keep up with this group for ideas.

I don't know if SS have contributed to other eye issues, but the SS came first about 10 years ago, and now I have some visual snow, palinopsia (where you can look at something bright or high contrast and see an after image for way too long), light sensitivity so I keep my monitor dimmer than would be expected, and a small clear "floater" in the center of my right eye that doesn't seem to float. Once fully vaccinated, I'll have to check that one out.

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[kfotocam]

Update.  Well the magnesium theory did not work as in the last three days one a day. Only one had a pain afterwards which lasts for about 30 hours. They do seem to make me more tired than usual. I have absolutely no connection with food. Also as I self monitor blood pressure and blood sugar, no connection there either. Certainly not even stress as I live the life of Riley. Mine seem to often occur around the noon period for some reason, and a mild pain occurs some 5 hours later or not at all. Certainly nothing to do with oestrogen as I am male!! I just have not found a connection yet.

But recently some other odd visual disturbances if I pop to the loo in the night, might be related. Whilst standing there relieving myself, a very bright white elongated  shape  appears almost blotting out the toilet. Once back in bed it disappears thankfully.  But again  recently a new disturbances going to the loo. A red prism styled star appears like the refraction of a bright object in a photo. Everywhere I look I can see this. Even back in bed it is still showing, weird.

Have these happened to anyone else?

[David Shapwe]

Very interesting.  I like that, "life of Riley".

Are you saying that everytime, or very often, when you rise during the night you have a SS?  Both the "bright white elongated shape" and the "red prism styled star" may be variants of SS's. They 'sound like" descriptions of SS's given by others.  It is interesting to hear that they dissipated on reclining.

I don't recall experiencing a SS while rising during the night.  I do recall, on one occasion, experiencing a SS on waking in the morning.  It dissipated quickly.

[chris-uk]

Just adding my story here.

I started suffering from SS about 10 years ago. I had an attack about every 10-14 days and most of the time I had no headache, but just had the aura for about 30 minutes and was left slightly "hung-over" afterwards. I saw a neurologist and even had an MRI scan, though that was more to make me less anxious about underlying issues. All was ok.

It's fair to say that SS made me nervous, as I went into any work related public speaking event with the worry that an attack would be very embarrassing and make me have to abandon my presentation.

I work in IT and spend a lot of time (i.e. most of the day) in front of a monitor. Back in about 2012, I decided to get a sight check and found that I needed glasses for VDU work and I'd been putting myself under a lot of eye strain without realising it. I finally bought some VDU prescription glasses and was amazed at how much clearer everything was on the screen. I hadn't realised how my near sight had deteriorated.

Almost immediately the SS attacks stopped and I'd maybe get one every 6 months, which then became once a year and now it's probably over 2 years since I had an attack. (hope I don't tempt fate in saying that).

I have to say though that now on the rare occasions that I have an attack, I do get a full migraine headache afterwards, which lasts for 2-3 hours. The last time I had one also left me vomiting - really bad. Thankfully, that seems quite a rare occurrence now.

So in summary, I reckon that my SS was mainly caused by not wearing glasses when I needed to. I hope that might help someone out there, or at least demonstrate that SS might go away as easily as it started in some cases.

Greetings from the UK to all.

Chris

[Phluffhead]

Adding my story here as well, having some very similar experiences. I have had a scotoma 1-2 times a year since about age of 12, tried hydration which seemed to reduce them. I would sometimes get a post headache and sometimes nothing. Sometimes they would include a brief period of a numb arm or one side of my face during the scotoma, the visual scotoma lasts about 30-45 mins, and I could also have confusion and difficulty speaking. But now that i am almost 50 they have ramped up significantly, in the last two weeks I have had 8 scotomas, two on one day even. I really have no idea what is causing it and neither do my eye or family doctor, they just suggest to keep trying things to rule them out and see what if anything can help. Hyrdation, blood sugar management, magnesium, fish oil, Ive tried them all.One doctor advised I immediately take 3-4 advil when I feel the scotoma coming on.  I have no idea if that helps or not- but it likely helps the delayed headache severity. Recently I have had a sore neck and am not sure if its the scotomas causing it or possibly the stiff neck causing the scotomas. Has anyone found these could be caused by a physical issue with your upper neck? I recently read about migraines can be triggered by this. 

[Andrew Hewitt]

While I don't have ss much anymore it was my experience that my upper neck, in the back at the base of my skull would always feel tight and constricted whenever I was going through an ss episode or migraines. So yea, for me it comes with the territory. My ss always came after strenuous exercise/sports and if I could point to anything that I think contributed to them slowing down and then going away it would be just getting more sleep, drinking more water and avoiding sugary caffeinated drinks. It's just a guess though. However if I go on a bender and don't sleep much for a few days I definitely start to feel headache-y and will even have an ss episode but not followed by a migraine. In the past I would always get a terrible migraine after the ss subsides.

- Andrew

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[kevin ryan]

My scintillating scotomas are very similar to those of kfot...gmail. I also have experienced another condition that the eye doctors shrug their shoulders at: vitreous floaters, but not the kind that arise suddenly from posterior vitreous detachment, a common, fairly harmless condition of those around 60 y.o.  Mine have developed slowly over the years, and can be magnified by water droplets on my swim goggles, or peering into a light microscope.

I'd like to ask those experiencing ss if they might also have a history of vitreous floaters? Just curious if there might be a correlation.

[David Shapwe]

No floaters, here.  Your SS's are like kfot's; so, does that mean that your SS's are relatively frequent, like kfots? Thank you for alerting us to this occurrence as it adds to our database.