#515 jruddy

jruddy [subject #515], Increased halo and starbursts around lights, positive and then negative afterimages, 2008. © 2008 jruddy (larger image see here)

jruddy [subject #515], Regular spiral aura, 2008. "This is pretty close to my spiral aura - the ball in the middle should be more like the spiral on a sea shell, but I can't bear to work on it any more." © 2008 jruddy (larger image see here)

jruddy [subject #515], Regular spiral aura, 2008. "I can more easily draw my aura on paper... silly computer geek! Of course, then I just had to manipulate it on the computer to make it more artistic." © 2008 jruddy

"I have a history of classic migraines (with aura) but have been migraine free (maybe one migraine every 3 or 4 years) for around 12 years.

jruddy [subject #515], First odd aura in December 2007 cluster of migraines, 2008. "This was the aura on the first migraine of the cluster of migraines. I went to emergency because it was so odd. Aura was more blurry, covered top half of vision instead of usual spiral. It started with a scotoma and lasted around 15-20 minutes, followed by extreme nausea and vertigo, pain wasn't very bad." © 2008 jruddy (larger image see here)

jruddy [subject #515], Fourth odd aura in December 2007 cluster of migraines, 2008. "This is the sideways aura. Quite linear - still starts with a scotoma." © 2008 jruddy (larger image see here)

In December 2007 I suffered a cluster of 4 classic migraines in 11 days. These were all odd migraines, the auras weren't quite right, the pain wasn't horrible and there was no nausea.

jruddy [subject #515], Visual snow, 2008. © 2008 jruddy (larger image see here)

At one point I had 2 auras in a row - as soon as the first aura dispersed the second started. I have had visual snow ever since this episode.

My visual snow varies from hour to hour and day to day. I also have wicked negative afterimages and also positive afterimages. I get sparkles as well. Bright lights have halos and large star effects which makes driving at night interesting.

I also have tinninitus most of the time and have had problems with weakness, rubbery feeling, pain and tingling on my left side.

I've had a rumbling headache for a month now and have had acute migraine-like pain on the right side - in front of my ear towards the top of my head - without 'aura' twice.

I have had varying degrees of vertigo both with migraine and not. These often precede left side numbness or pain.

I am exhausted, have difficulty concentrating and focussing. My pupils adjust constantly most of the time.

When my left leg first went numb I went to emerg and the CAT scan was clear. I am waiting for an MRI (Jan 28) and neurologist appointment (Feb ? - trying to get it moved up from the 25th). I am also waiting for an opthalmologist appointment to rule out eye disease.

I've had 2 more migraines in January - both atypical aura that shot off in one direction of my vision (as opposed to a circular or spiral pattern as I used to have) and both very manageable so far as pain goes.

I missed around 1 month of work (at a computer) but have managed to get back in now. I take regular breaks and took a nap today at lunch.

My family doctor is doing a great job setting me up with specialists. He doesn't want to "f***" me up - in his words.

I have just started an anti-depressent - it seems this situation has aggrivated a pre-existing low grade depression.

So far the most likely diagnosis is persistant aura without refarction. My Doc's holding off on Topomax until the MRI and Neurologist see me. I have Naproxen for the migraines but it does little for the vision problems.

Cheers
Jim"

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - New to here - have VS, January 16, 2008)

"I saw a psych - it wasn't too bad. He determined a mild depression but that's it. I'm still going to be going the Neuro and Optha shortly.

Good luck!"

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Neuro, January 16, 2008)

"Visual snow (6) - Changes from day to day and from morning to afternoon - gets worse and better, I'd rate between 4 and 9. Often worse after sleep or nap. Sparkles are especially annoying when I get them...

Increased negative afterimages (8 )- Very annoying negative afterimages. These drive me bonkers. Have been better lately, but when they flare up these are the worst.

Increased positive afterimages (7 ) - Not as obvious as the negative images - but still present. If I look at the white ring of a coffee cup then look away, the white ring remains in my vision for around 1/2 second before fading to a black negative. These also cause big problems when reading or using a computer.

Floaters (1) - I've noticed floaters for years - they don't normally bother me.

Starbursts and halos around lights (8 ) - much worse at night - also during the day for bright lights and high contrast situations.

Feeling slightly fatigued and 'weird' (4) - Feeling better now I'm on antidepressants - still weird and fatigued.

Persistent tinnitus (2) - doesn't bug me much. I can ignore it.

Occasional vertigo - Between 3 and 9 - depending on episode. Worse case I kept walking into walls - felt completely drunk.

Hemiparesis - Left side - ( 6 ) - persistany - usually much worse during vertigo spells. Had twice on right side which literally threw me off (and down on to my knees)."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Symptoms we all have, January 17, 2008)

"I suspect my VS is migraine related, possibly sporadic hemiplegic migraines, though I may have had a few TIAs over the last month as well...

My MRI is in less than a week, will wait and see if anything shows up on there.

I've started on Topamax 25 mg/day for now - no real effect yet so far as I can tell except drinking 2 beers makes me completely drunk (oops). I'll be going up to 50 mg then talk to the doctor about a higher dose. I think it counteracts the Citalopram so he wants to be careful with that...

Since first getting VS (incl. afterimages etc.) in December I've adjusted to the point where I am almost able to function normally on a day to day basis - almost...! I am sure the VS isn't getting any better and is worse on some days, I guess I'm just getting used to it and my brain is adjusting."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - What do you believe caused your VS, January 22, 2008)

"I've only had this [sleep paralysis] once - and only since VS (among other problems) started.

I took a nap, woke up and could not move for around 2-3 minutes. Eventually I was able *force* my arms and legs to move - they felt like I had a lead suit on."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Sleep paralysis, January 22, 2008)

"I am a firm believer in staying away from MSG, processed meats etc... Around 12-14 years ago I was getting migraines constantly. I cut a bunch of stuff out of my diet, fixed my sleeping habits and the migraines went away."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Images of what I see when I try to read, January 23, 2008)

ChelleWMCN [subject #272], Visual loss, 2008. © 2008 ChelleWMCN

ChelleWMCN [subject #272], Corona phenomenon, 2008. © 2008 ChelleWMCN

ChelleWMCN [subject #272], Swirls, 2008. © 2008 ChelleWMCN

Referring to the above 3 pictures from ChelleWCMC [subject #272], jruddy noted: "Your third image looks similar to my full migraine auras (but my auras are temporary and completely block out my vision - they are not transparant or transluscent).

The first image looks like what my sister [subject #530] gets and has been diagnosed as an odd form of visual migraine.

I get the glows around high contrast objects a lot since VS came on. Do you get positive afterimages?

Personally I dispise migraines - both having them and 'dealing' with them. So many people mis-use the term for head-aches it really burns my butt... 'how's your head ache?' people ask me.. if it was just my head hurting I could deal with it! lol

It seems to me that 'migraine' has maybe become a bit of a catch-call for these odd things. The problem is that the average Joe doesn't know a migraine from a pressure head-ache and migraine sufferers have to overcome certain prejudices as a result... "

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - More images - Finally, January 23, 2008; additions in square brackets by Klaus Podoll)

"I find reading improves or gets worse along with the other visual symptoms.

At worse, I have to read each individual letter as I am unable to focus on the entire word - I'm not sure why.

On average I have to focus on every word or possibly two.

To compare, before VS I used speed reading techniques - reading 4 or 5 words in one 'eye jump'.

I am adjusting - slowing down my reading - but for a while I'd end up just reading every 4th or 5th word..!

My VS is normally clearest in the very centre of my vision, worse towards the edges. I suspect this may be the mechanism at work...?"

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Images of what I see when I try to read, January 23, 2008)

jruddy [subject #515], Negative scotomas and increased negative afterimages, 2008. © 2008 jruddy

"A-ha! This morning my negative after-images are brutal and reading is just like your #1 example [showing negative scotomas]! At least in my case, #1 seems to be associated with negative afterimages..."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Images of what I see when I try to read, January 24, 2008; additions in square brackets by Klaus Podoll)

Referring to SupuliSusie's (subject's #405) 3 examples of annoying carpet patterns from Visual Hell, jruddy cried: "Ahh! Yes - er no! The first two are awful! The third is bearable, but ugly!"

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Annoying Carpet Patterns!, January 25, 2008)

"Hi All, my MRI is finally here tonight at 10:00 p.m., wish me luck!

Though it would be frustrating to have a clean MRI with all these symptoms, it would be the best result so... wish me luck for no plaques, lesions, infarcs etc...!

Results should be at my GP tomorrow, I see my Neuro in a week!

James

All this snow and no where to ski..."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - MRI tonight - wish me luck! - MRI Results - "Fine", January 29, 2008)

"I had the MRI - now comes the waiting game - waiting for results - yay!

What an odd experience... never mind that my VS was peaking and other symptoms were acting up...

Buzzz... click... bbbbbbbbrrrrrrrrrr.... bang....

I thought I might be a little claustrophobic before, now I'm pretty sure... it took a whole lot of willl power to keep calm - it's nothing like a CT - lol!"

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - MRI tonight - wish me luck! - MRI Results - "Fine", January 29, 2008)

"The VS, afterimages, disconnected feeling all had been really bad for a few hours but seemed to peak when I was in the waiting room and held the peak until I was in the machine. My hemiparesis was actually doing quite good at the time - though I was a little distracted and to be fair, may not have noticed.

Once I was in the machine I kept my eyes closed for a long time. I was extremely tense, as in every muscle in my body was tensed up. My CT scan last month was not like this at all. Eventually, through closed eyes I noticed my VS had drastically dropped off. I gradually started to relax my legs and arms a little, and tried to resume a normal breathing pattern. It took me a few tries at opening my eyes to figure out what I was seeing (the mirror, my knees, the window etc...) I kept my eyes closed and lsitened to the sounds mostly but looked at the mirror from time to time. It seemed to help me not to panic. After the MRI, my VS was actually not too bad for around an hour. I wondered if the MR helped in some odd way or the endorphins or some other stress reflex did something. One thing to note though, my hemiparesis was worse after the MR, so whatever body function helped my VS, didn't help my left side."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - MRI tonight - wish me luck! - MRI Results - "Fine", January 29, 2008)

jruddy [subject #515], Increased positive and negative afterimages, 2008. © 2008 jruddy

jruddy [subject #515], Monocular diplopia, 2008. "The double images remain if I close one eye or the other." © 2008 jruddy (larger image see here)

"Just to clarify my double vision in each eye that crops up from time to time. My entire field of view isn't doubled. Only what I am focussing on in the centre.

So if I were looking at myself in a mirror, focussing on my eyes I would see this [monocular diplopia, see illustration above].

It is extremely disorienting and I usually just go lay down until it passes. It always accompanies significant increases in other symptoms such as VS, afterimages etc... [item B.10(b) of MAS score]"

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - MRI tonight - wish me luck! - MRI Results - "Fine", January 31, 2008; additions in square brackets by Klaus Podoll)

"1. Name or screen name (optional): jruddy

2. Email (optional):

3. Location (optional): Canada

4. Age: 36

5. Sex: Male

6. Nationality and Race (optional): Canadian - European Descent

7. Do you have classic migraine (migraine with aura) or common migraine (migraine without aura)? When did it begin?

I have classic migraines - suffered for a couple of years in my early to mid 20s, changed my eating and sleeping habits then had been relatively migraine free for around 12 years.
Recently I had a cluster of 4 classic migraines with odd symptoms in 11 day period, and two more in a 2 week period.

8. What do you take for your classic or common migraine and does it help?

Naproxen - seems to help with the pain. Ibuprofin has also helped. Tylonol 3's didn't help - in fact made some symptoms worse.

9. Have you been diagnosed with persistent aura (prolonged migraine aura status)?

Not yet.

10. What is your visual problem and how long does it last?

Visual snow, sparkles, positive and negative afterimages, occasional double vision, difficulty focussing.

Halos around bright objects and also 6-point-stars on bright objects.

Note - double vision was in each eye - if I closed one eye I still had double vision - this happened a few times and was temporary.

Has been persistant at varying degrees for 4 weeks so far.

11. Any other problems that you think might be related?

Weakness, tingling, pain and rubbery numbness on my left side. Occasional vertigo. Tininitus. Non-migraine headache

12. What do you take or do for your vision problem and does it help?

Nothing yet. Waiting for neurologist.

13. Have you found a trigger for your vision problem?

Seems to be worse when I am tired. Rest often provides a temporary relief.

14. What tests have you had and the results?

Cat Scan - Clean
2 series of blood tests (?) - Clean

15. Drug history (pre VS):

Famotidine, muscle relaxants for back muscle spasms.

16. Drug history (post VS - effect on VS - negative, positive, not at all):

Naproxen for migraine - seems to help me to focus - may be simply pain reduction?

17. Do you have a positive family history for migraine? If yes, who is affected?

Yes - my father and sister both have history of classic migraines. Sister has developed into visual migraines.

18. Other information you want to provide?

In December 2007 I suffered a cluster of 4 classic migraines in 11 days. These were all odd migraines, the auras weren't quite right, the pain wasn't horrible and there was no nausea.

At one point I had 2 auras in a row - as soon as the first aura dispersed the second started. I have had visual snow ever since this episode."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - MRI tonight - wish me luck! - MRI Results - "Fine", January 31, 2008)

"The double images remain if I close one eye or the other. When I have it, sometimes it is worse in one eye, sometimes it is the same in both. The magnitude of the doubled image varies depending on how bad the episode is. It can be kind of a ghostly flicker or an actual solid looking double of what I'm looking at. (It is not good to try and talk to people when they have 4 eyes...)

I had the 2 auras in a row on December 13, 2007.

When I was suffering from weekly migraines, around 14 years ago, my migraine 'hangovers' would include photophobia and negative afterimages. They would last around a day or two.

I recall seeing something like visual snow when I was a child/teen ager when in a darkened room from time to time. I never had it in normal lighting, nor had any of the other visual symptoms. I don't recall how long it would last. It seems to me it would be on the magnitude of hours.
I don't recall having VS at all in my adult life.

The weakness on my left side first appeared on December 20. It lasted 3 hours, though the doctor at emerg could detect some weakness a few hours after that. CT was clean.
Since December 20, I have had a number of spells of vertigo with left side weakness that lasted around 10-30 minutes. The weakness is far more pronounced during these spells and takes days before I start feeling confortable again - though I still have persistent weakness. Seems like it could be TIAs to me, but I'm certainly no doctor! My GP is thinking they might be Migraine related which isn't much different if I understand... I see a neurologist in person on Monday and had an MRI on this Monday past so hopefully I can get some answers on this one."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - MRI tonight - wish me luck! - MRI Results - "Fine", January 31, 2008)

"Sparkles, positive and negative afterimages, difficulty focussing, halos around bright objects, 6-point-stars on bright objects all appeared at the same time, after the double attack.

I will try to make images of the positive after images, halos and bright images - the sparkles are very odd, like small fireworks bursting at the sides of my vision. I keep looking to see what is -'over there' but of course there is nothing. They're kind of like very bright and intense silvery VS - small - they seem to explode in a 'sparkle' then fade away. I tried to show them in my one picture with the road and houses.

I was under a bit of stress leading up to my first migraine of Decembre, but nothing extrordinary. But after 2 migraines in a short period I was under quite a lot of stress.

I should mention that after the double attack I felt quite emotionally numb for a few weeks. I have since been diagnosed with depression, which probably isn't a surprise."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - MRI tonight - wish me luck! - MRI Results - "Fine", January 31, 2008)

"Hello, I normally carry my emotions close to the surface, if you understand. I am pretty quick to show any and all emotions, anger, happyness, sadness, laughter etc... As quick as I am to show an emotion, I am normally quick to shut it off (normally).

I am also normally passionate about issues and people that I care about.

In December, when the VS came, I became emotionally numb. I guess my emotions were essentially vacant. On a positive side I had incredible patience too! I stopped feeling anything. No anger, no frustration, no happiness, no sadness, nothing, just an odd cloudy buzzing state.

I honestly don't recall how long the numbness lasted, I'm sure it was between 3 weeks and a month. But when it passed, I started to have disturbing thoughts and spoke to my doctor. I saw a 5th yr psych resident, he did a 1.5 hour examination and determined that I've actually been suffering from a low grade depression for years, but this current problem pushed it to the forefront. I have to agree with him completely. For years it was as though I had two emotions, my surface emotions and my gut emotions. When this problem game, both my surface emotions and nagging gut emotions crashed and I had a really hard time.

I'm on Citalopram now and it is helping - I only have one layer of emotion and it is pretty good most days, though since I've started the Topamax it doesn't seem as effective - that's something to tell my doc when I see him next week."

(jruddy [subject #515], Email to Klaus Podoll, January 31, 2008)

"I really don't know from what year I've had the dysthymia, perhaps since early teens, perhaps only the past 2 years. If it comes and goes for periods of months at a time, I would say early teens. If it stays constant, than maybe the past 2 years."

(jruddy [subject #515], Email to Klaus Podoll, January 31, 2008)

jruddy [subject #515], Increased positive, then negative afterimage, 2008. "If I look at the white ring of a coffee cup then look away, the white ring remains in my vision for around 1/2 second before fading to a black negative." © 2008 jruddy

"Here is the best art I can do right now... maybe on a better day I can spend more time on it.

High contrast does me in for both positive and negative afterimages - when it's really acting up, it just takes a quick glance at the object for me to get the afterimages, I usually just go lay down or close my eyes fr a while and watch the snow... Even on a good day, the white ring on the cup will give me a white after image if I look at if for 2 seconds or more."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - MRI tonight - wish me luck! - MRI Results - "Fine", January 31, 2008)

jruddy [subject #515], Increased halo and starbursts around lights, positive and then negative afterimages, 2008. © 2008 jruddy

"Traffic lights used to bother me more in the day but I'm getting used to them now. They're still a distraction at night, as are headlights, tail lights and streetlamps."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - MRI tonight - wish me luck! - MRI Results - "Fine", January 31, 2008)

"Actually, now the 'sparkles' are making a lier out of me... I do get them in front of my eyes as well as at the peripheral areas.

Perhaps I am better at ignoring them when they aren't in the corner of my eye... I know I don't look to see what they are, so perhaps that's it, a less annoying aspect of the same thing.

Since they're in front I can look at them a bit more. They aren't exactly like the VS that I see. More like the blinding brightness of my migraine auras. They seem more linear too, not explosive, though they do seem to grow a little then peter out. I'll keep an eye on these and see if I can figure out what they look like (no pun intended)."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - MRI tonight - wish me luck! - MRI Results - "Fine", January 31, 2008)

"MRI Results are in - it is 'fine'.

Boy that bugs me. What the heck is fine?

She's faxing it to the neuro so I will be sure to get clarification from him on Monday. I'm going to assume it means it is spotless and perfect for now.

Regardess there seems to be nothing nasty on it so that is great news!

I just might celebrate with a very wee dram of very old whisky...

maybe..."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - MRI tonight - wish me luck! - MRI Results - "Fine", January 31, 2008)

jruddy [subject #515], Human face emerging from visual snow, 2008. "This is fairly close. It only happened once..." © 2008 jruddy

"As I mentioned in my other post, as I drift off I sometimes see images flash by and lately they've been overlayed with snow. Very rarely the snow manifests itself into an object or face then dissolves. For example, two nights ago I woke up a few times, and the snow was terrible (and very colourful, which is a change). One of the times I was drifting back off to sleep the snow kind of formed a small very basic 3 dimensional face. It startled me back awake...

As I've said to my wife, I wish I would have been a drug user before, at least I'd have some expanation for all this mess!"

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Seeing things in visual snow, February 1, 2008)

"I have noticed the left side of my face is less sensitive - but then I am also suffering from left side weakness so... there you go...

And yes, sometimes the colour in my eyes goes all wonky. I figured it was just me. It isn't all the time only occasionally.

My left eye goes less saturated and green, my right goes more saturated and red. It's happened maybe 3 times since I got VS in December.

I never even thought of it as anything other than odd... I'll have to start documenting it to see if it has any relationship to any other symptoms.

Geez... too many symptoms..."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Two symptoms, may or may not be connected to migraine, January 31, 2008)

"I can't say I ever recall seeing VS in my dreams. Sometimes, as I am just about to fall asleep, I see a series random images flash by. These have been overlayed with visual snow lately, but then I am still partially awake when this happens. Even before the VS I have not been a great sleeper, and on nights where these images appeared as I drifted off, I knew I was in for a good night sleep."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - MRI tonight - wish me luck! - MRI Results - "Fine" ???, February 1, 2008)

"Before this wonderful thing called visual snow came along, I enjoyed astronomy as a hobby - though not so much since my two little boys came along. There's something about sleep I've learned to appreciate now... Yes, corona is an atmospheric effect - it is obvious around the moon on a hazy night - and is very annoying to astronomers.

But in our cases it also seems to be a symptom of visual snow. I get it around stoplights in the day time, for example, and car's tail-lights at night. (As well as headlights, etc..) This isn't due to any haze or fog in the atmosphere, but something goofy in our heads.

my telescope sits collecting dust..."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Corona (?) around light sources in the dark, February 4, 2008)1st Neuro Visit - was I expecting too much?, February 4, 2008)

"Hi,

I'm deflated. I heard my neuro was a 'good one', a 'migraine specialist', etc...

But he focussed so much on my migraines that I had to fight to get him to acknowledge my persisting problems with vision, tinnitus and one sided weakness, vertigo episodes etc...

And as so many here have mentioned before, he brought up the depression and indicated it could be a cause of these problems...

I guess I'm initiated now. And also stuck at 50 mg of Topamax for another month...

Talk about frustrated... not even a token EEG... he didn't even check my left side out to confirm what I was saying! bleh..."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - 1st Neuro Visit - was I expecting too much?, February 4, 2008)

"I did ask him if he was familiar, or had any patients that were diagnosed with persistent aura without infarction. He didn't seem to think much of that diagnosis in general...

I'm going to cool off for a while and think about my options. I may give this guy one more chance - or ask to see someone else."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - 1st Neuro Visit - was I expecting too much?, February 4, 2008)

"I guess given my complete history, which I haven't listed here, I was expecting more of a neurological examination than just a deep tendon reflex check on my knees... Things like dropping things, tripping over my own toe, waking up with extreme pain in my arms and legs, aching legs when I lay down, jaw twitches that drive my lower incisors into my uppers, weak spells that last days, tingling in hands and feet etc...

He didn't mention hemiplegic migraine aura, though I have found info on it on-line. I've never had weakness associated with my migraines - only since having various odd spells since getting VS - so it absolutely could be migraine related. My concern is that it might be migraine aggravated, pre-existing condition and I don't want anything to be overlooked."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - 1st Neuro Visit - was I expecting too much?, February 5, 2008)

"I've had a B12 deficiency in the past and one of the tests I had in Jan was a B12. I do take a supplement, though not religiously - I don't absorb B12 very well, probably because of my acid reflux meds so it's a big dose, but I've been able to keep my levels pretty good with diet and supplements, and haven't needed the needle.

A bar of soap?! Weird. The cramps are present during the day too, basically anytime I'm at rest. They started at night though. I'm thinking RLS but am worried about other nasties that are best left unmentioned.

Next visit to my GP I'm going to ask to see a general neurologist for a full examination - I'd like to rule a few things out if possible."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - 1st Neuro Visit - was I expecting too much?, February 6, 2008)

"Oh ya, the tingling has been nuts since the topamax, more like electric shocks on the bottom of my feet and palms of my hands, but I've had tingling in my ams and hands for years before starting Topamax."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - 1st Neuro Visit - was I expecting too much?, February 6, 2008)

jruddy [subject #515], Temporary increase of persistent visual snow with attack of migraine aura (straight bright shimmering lines, depersonalization) without headache, 2008. © 2008 jruddy (larger image see here)

"My visual symptoms weren't too bad as I was driving in to my appointment yesterday. The visual Snow was present, as was mild tinnitus, but I can't think of anything else that was acting up or at least noticeable. It was an overcast day, but my sunvisor was down (out of habit, since VS against the sky is usually very distracting) I popped up my sun visor and the VS wasn't too bad, which was a welcome respite - normally it would be horrible against a grey sky.

But within a few minutes my VS went into overdrive and became more aura-like, with straight bright shimmering lines. I felt off, detached like I have in the past with bad visual snow. I definitely felt like I should not be driving, but I was almost at the neuro's office so I put the visor down and continued to drive.

The very bad aura-like VS only appeared in the part of my vision that was in the grey sky, not where the roads or buildings were. It remained against the sun-visor for around 10 minutes. I continued to feel off for around an hour. In general my VS was worse for the rest of the day."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Interesting episode, February 5, 2008)

"Yes, I had no headache. I will try to make an image [see above] for you."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Interesting episode, February 5, 2008; additions in square brackets by Klaus Podoll)

"VS isn't too bad so far today. Not great, but not too bad. So far no double vision which is a big improvement over the weekend and Monday. Afterimages are flaring up a bit though, but they're manageable so far.

My left side is still bugging me, and since I'm still stressing about the neuro visit, I'm twitching in my arms and legs like crazy... which is making me stress more which is making me twitch which is making me walk around to relieve the twitching, which is making my left side worse which makes me sit down and relax which makes me twitch more which is making me stress more which is... well you get the picture.

At least I'm at work for a change and am adequately distracted from time to time!"

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Interesting episode, February 5, 2008)

Vicious circle of stress, persistent aura, anxiety and depression (larger image see here). If the positive feedback loop in which the system responds to perturbation in the same direction as the perturbation runs out of control, it can result in the collapse of the system. This is called vicious circle, or in Latin circulus vitiosus. © 2008 Klaus Podoll [more]

Referring to the above illustration of the vicious circle of stress, persistent aura, anxiety and depression, jruddy (subject #515) remarked:

"I get the same with my left-side weakness and twitching/jerking/soreness. - It's a bit more complex though.

It starts with the weakness - it makes me stressed and makes me rest.

When at rest and stressed I start to twitch and jerk in my arms and legs

The worry of Parkinson's causes more anxiety and stress, which makes me twitch and jerk more.

Movement relieves the twitching and jerking, so I walk around, this also relieves stress and anxiety sometimes, but my left side gets very tired and sore.

So I sit down and rest, and start twitching..."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Vicious circle of stress, persistent aura, anxiety and depression, February 6, 2008)

"On Medical Leave.

Well, no more trying to work with double vision, afterimages, or visual blizzards.

No more trying to figure out complex problems with mind fog.

No more trying to type in case-notes with hands that are posessed by twitch daemons.

No more working an hour and pretending to work for the other seven...

No more stress or guilt from slacking off because I can't see/think/work when I should be working.

Now... let's see if I can get to a point where I can work effectively again."

Cheers

Jim"

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - On Medical Leave, February 8, 2008)

"I am lucky - we have insurance at my workplace for up to 17 weeks of short term leave at 85% of my wages. The paperwork was a bit invasive but at this point they could have asked for a kidney and DNA sample and I would have complied. My GP and psychiatrist both agreed I needed a leave - officially I'm on leave for migraine complications, anxiety and depression - that's all I've been conclusively diagnosed with at this point! Of course I didn't have anxiety nor anything more than dysthymia before the VS kicked in but, hey... whatever, right?

Keep in mind I am in Canada where the laws are usually (but not always) a bit more favourable for the employee than the USA."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - On Medical Leave, February 9, 2008)

"Every time I yawn I feel nausea [probably representing premonitory symptoms of migraine, see Jacome, 2001, and Schoonman et al., 2006] - this has been going on for around a month - I've been blaming it on the Citalopram and haven't mentioned it to my GP."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - 1st Neuro Visit - was I expecting too much?, February 9, 2008; additions in square brackets by Klaus Podoll)

"Tinnitus. It started with the visual snow on Dec 13th and though it quieted down, I don't think it actually had ever left. If it had, it came back every day and lately has been constant. It is louder in my left ear, but is also present in my right ear.

Weakness of left side. The weakness came on it's own, suddenly, around 24 hours after migraine #4 in the December 2007 cluster. The VS came immediately after migraine #3. I am actively working with my GP to define the cause of this weakness as it is persisting and actually seems to be progressing (getting worse).

Rumbling headache. The headache started with the migraines in December. I'm not sure which migraine. I haven't slept well in a a long time so it could just be sleep related. (Or depression - or anxiety...)

Hemiparesis 2 times on right side. I've had time to think about these spells, and had similar spells, though not as powerful. I think my amateur self-diagnosis is wrong - it may be something with the reflexes. When I've has similar spells lately, I've had strength in my right leg until it was almost straight, then a complete loss of strength, like some kind of odd reflex action. Thus, when trying to stand, favouring my left side - using the right side, I'd start to stand, then end up on the floor as my leg would give out. Cool eh? Now if only I can find a neuro who will listen to me... My doc says I do show signs of clonus, so perhaps this is related to this?

Monocular diplopia. The double vision typically only happens if I've been using a computer, reading or been concentrating hard for any period of time. So yes, I've been having it daily. Yesterday and the day before, I did not, but then I did not use the computer, do any reading or any analytical thinking. (Did not work or surf... much)

In December 2007 I suffered a cluster of 4 classic migraines in 11 days. These were all odd migraines. #1 - Aura was more blurry - covered top half of vision instead of usual spiral, pain wan't very bad, 1st time ever with vertigo. #2 - Regular spiral aura - no nausea, little-no pain - manic feeling afterwards - never had manic feeling before with migraine. #3 - Regular spiral aura, numb tingle in face, 2nd spiral aura immediately after 1st moved into face, mild pain - visual snow started after 1 Hour nap. #4 - Sideways aura - mild pain.

Muscle twitches. I've had twitches for a while - I can't say how long. Maybe 3 years, maybe 5. They've been common enough for me to be annoyed with them, but not so common that I was worried. I would drop things sometimes. It has been worse in the last year. I don't drink caffeine as it makes the twitching worse. I never thought anything of the twitches, thought maybe they were a carryover from a previous minor B12 deficiency."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - 1st Neuro Visit - was I expecting too much?, February 9, 2008)

"Yes, I have been twitching for longer than 7 days, the only thing that changes is the magnitude and frequency, - this seems to be stress related."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - 1st Neuro Visit - was I expecting too much?, February 9, 2008)

"Stress before PMA - stress from migraines. Elimination of stress, relaxing over Christmas break, did not relieve symptoms."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - 1st Neuro Visit - was I expecting too much?, February 9, 2008)

"The stress was related to having migraines again. I thought I was done with them. I thought I had pretty much beaten them and would only have them occasionally. Then I had three migraines in 7 days. The third migraine was weird, with a second aura starting as soon as the first one cleared out of my vision (and went into my face)."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - 1st Neuro Visit - was I expecting too much?, February 10, 2008)

"I've been twitching occasionally (more than twice a day) for a couple of years. It causes me to drop things, throw things, jam my lower inscisors into the back up my upper inscisors etc...

I've been ignoring it / blaming it on an earlier mild B12 deficiency. It has been more noticeable in the last 4 months or so, but I've still been ignoring it. I've not been drinking any caffene for a few years as it seemed to make the twitches worse. (Again, I was ignoring the twitching and was quick to blame Tea)

The first sign that the twitches were a real problem was when my left leg first went numb on December 18 - I was extremely twitchy in the emerg ward - like frighteningly. My mother-in-law was with me, and she is a retired Registered Nurse - she didn't seem concerned. The twitching was constant and lasted for 3 hours - it affected both arms and legs, contractions that would turn my toes in and raise my feet off the ground. Also my biceps would contract, my arms would tuck into my chest and my hands would turn down and away from me. I get similar big jerky twitches now, but not to this extent, and only when I am under extreme stress or anxiety.

The twitching has been more and more common. I'm probably twitching or jerking once every 5 or 10 minutes when at rest. When anxious or stressed it can be every few seconds. These leave me very sore.

I also get weird vibrations, some under the skin, though not too many of those. If I hold my arm a certain way my hand will shake.

I have concerns about Parkinson's or other neurological disorders, but my doctor has calmed my fears for now. Still, there's always that chance..."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - 1st Neuro Visit - was I expecting too much?, February 10, 2008)

"I'm trying to quantify the effects of various stimuli on my VS through the magic of self-experimentation.

I had enough of anecdotes, and tried using the scientific method, or at least the controlled experiment and observation part of it...

Worse is defined as significantly denser and brighter (and darker) spots, the appearance of aura-like geometric shapes and a feeling of disconnectedness/foggy-brained.

I have found that I can make the VS much worse on demand 100% of the time by doing the following:

- Going from a semi-dark room to a very bright room.

- Going from a bright room or outside to a dark room.

- Simply looking at a grey, light blue or beige low contrast wall.

- Looking at an object with contrasting luminances - brighter and darker areas.

- Looking out a very bright window, then at a beige or taupe wall - this has made me feel like I'm vibrating around 20-30% of the time.

- Also when I wake in the middle of the night and in the morning my VS is always significantly worse - I've only had one episode where I felt like I was vibrating when waking.

- The VS gets better shortly after waking up, then gets worse as the day progresses. Computer work or watching tv, or anything listed above seems to accellerate degeneration.

- Concentrating - for example, writing poetry, seems to increase my VS as well. I've tried this on five different days, performing different tasks that didn't require visual acuity and found it to be true each time.

Does everyone/anyone else have any of these things?"

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Experimenting - Ability to change magnitude of VS, February 10, 2008)

"No, I don't recall having a dream before waking and having bad VS nor when vibrating. The few times I do remember waking from a dream my VS was bad, but not insane. I haven't been remembering many dreams lately, which is odd because I normally have very vivid and odd dreams, I wonder if I have a developed a sleep disorder?

I awoke vibrating in the middle of the night. Maybe 2am?

Regarding sparkles, I should be able to make a drawing tomorrow morning when my eyes are a bit better - I think I've figured out what they are.

We've finally had some blue sky and during some experimentation I was able to increase the frequency and intensity of the sparkles. With a little will power I was able to create a totally new experience.

1. I look into the blue sky without blinking. The sparkles appear within a few seconds.
2. Continue to stare, within 10 to 15 seconds, the sparkles become hundreds apon hundreds (maybe thousands) of small worm like crescent shapes which are very aura like in appearance, almost like a sky full of miniature auras. The C shaped worms face in all directions, shimmer in and out of existence very quickly and seem to move in random directions very slowly.

After maybe 5 or 10 seconds of this I am unable to continue looking do to a near irresistable urge to look away. Afterwards I feel light headed and a bit disoriented. During the "worms" I feel like I am about to get a migraine. I would wager that I could trigger a migraine like this on demand with enough will power - not something I'm willing to test unless there's some wires hooked to my head and a greater good to be served.

I did this three times today and each time was identical. I feel I can reproduce this again."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Experimenting - Ability to change magnitude of VS, February 11, 2008)

"Just to clarify - if I take a quick nap, the VS is much worse when I wake up. If I simply lay down and close my eyes for 10 minutes, the VS is worse.

If I allow myself to 'stare off into space' - not focus on anything - the VS gets worse.

During the morning hours, when my VS isn't too bad, focussing on something like a computer screen or text on paper can actually push the VS out of the middle of my vision - it's still snowy all around it, but what I am concentrating on is clear. It's like if I can force myself to focus on it hard enough on something I can force it to be clear, but as fatigue kicks in, it becomes impossible and the VS gets very bad and I start getting double vision, after images, worse snow, etc..."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Experimenting - Ability to change magnitude of VS, February 11, 2008)

jruddy [subject #515], Sparkles, 2008. © 2008 jruddy (larger image see here)

The sparkles "start out as very quick moving flashes - eventually it becomes obvious that the movement is in the worm shape. I often get these in the corner of my eye - they are bright, shimmery - very aura like and very distracting. I also get them in front of my vision in brighter light though I don't see the worms against grey skies. (I just tried, there was something there, but I couldn't make it out, I wonder if it is because the worms are kind of grey/silver themselves?)"

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Experimenting - Ability to change magnitude of VS, February 12, 2008)

jruddy [subject #515], Sky worms, 2008. © 2008 jruddy (larger image see here)

"Now presenting for your enjoyment...

The amazing...
The stupendous...

Skyworms!!!!"

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Experimenting - Ability to change magnitude of VS, February 12, 2008)

"December 13, 2007 - Attack of migraine with aura (1st spiral aura, numb tingle in face, 2nd spiral aura) with mild pain

"Shortly after the first spiral aura transitioned to the left perhiphery of my vision, the left side of my face went numb/tingly.

It continued to exhibit some numbness 6 days later, though the doctor could find no evidence of numbness in my leg, only weakness."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - 1st Neuro Visit - was I expecting too much?, February 11, 2008)

Two videos illustrate jruddy's bilateral (right > left) myoklonic jerks of upper and - to a lesser degree - lower extremities:

"Regarding the twitching, I have foolishly uploaded video of my twitching when under stress/anxiety and when calm to youtube.

I had the camera/tripod ready for when I was twitching:

Under Stress/Anxiety
http://www.youtube.com/watch?v=A19QkPVUknw

Normal: (Still the odd twitch)
http://www.youtube.com/watch?v=tAcRY-ePt98

I have set the files so they can't be embedded into other sites. I will be taking them down in a week or two anyways. I don't want to end up on some gimp mash up."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - 1st Neuro Visit - was I expecting too much?, February 11, 2008)

"I've been sneezing at the sun since I was a small child.

I've read something like 1 in 3 people have this reflex. I wonder if it is more or less here?"

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Photic sneeze reflex - anyone else sneeze at the sun?, February 13, 2008)

"I think my neurologist believes I am a hypochondriac, and I understand why.

I am a technical analyst by profession and by nature and am meticulous in gathering data. I've also expressed concerns to my GP and to the Neuro as to specific diseases that might make me weak on one side and make me twitch. The diagnosis that the neuro gave for these is anxiety. I agree, anxiety does make me twitch worse, but it doesn't have any effect on the left side weakness. What kind of anxiety disorder causes weakness and pain on one side of the body, starting with the leg, then progressing to the arm, then neck? None that I know of. The only anxiety problem I have is a mild social anxiety - I really don't like big groups of people or crowds and avoid them if possible.

I've had some time to think about this and I believe that his conclusion may be that of hypochondria (or cyberchondria). I'm now wondering if he thinks the problems with visual snow, which he has all but ignored/dismissed, fits in to this diagnosis as well. I'm not going to pretend cyberchondria isn't a possibility, but it would seem odd since I researched the symptoms after they developed, but then he didn't bother to find that out and I'm not sure if he'd believe me if I told him.

So, no more meticulous data collection. No more trying to be helpful. Screw it. If they don't think there's something physical, I'll just tell them to give me anti-anxity pills until I'm completely non-functional and see if the problems persist.

Yeesh! My shrink thinks I'm normal, my Neuro thinks I'm nuts!

What a world.

Jim"

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Hypochondria?, February 18, 2008)

"I guess I have an internal struggle going on.

I just want my symptoms to be treated or cured, preferably cured.

Unfortunately I also have access to the internet.

So I look up my symptoms:
- Weakness on one side of my body, started in my leg, is now in my leg, arm and neck.
- Twitching
- Hyperactive Reflexes

What do you think pops up? ALS.

Well, as far as I'm concerned, that's not an option. So what is it? I want this migraine expert to tell me it's all migraine related, only he didn't seem to want to talk about any of it. He blames it all on anxiety. Which is ok with me, if it made sense. But it doesn't. Or maybe it should.

The internal dialog becomes unbearable so I try and switch it off, ignore the weakness. I went to the mall with my family, pushed the double stroller around, pushed through the cramping and weakness - mind over matter. This worked as well as trying to ignore the VS and watch TV/use a computer. It just made it worse.

But then part of me says to myself, toughen up, buttercup, it's all in your head.

Boy, what a roller coaster! I can't wait for the loops!

Cheers!
Jim"

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Hypochondria?, February 19, 2008)

"As a new party trick, I have had fasciculations on my right side of my face for a week. Please understand I'm not worried about ALS any more than being hit by a truck, it's just something I am aware of and so would like to have some kind of an explanation other than ALS, if you understand..."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Hypochondria?, February 19, 2008)

A video illustrates jruddy's fasciculations of the right buccinator muscle of the face (cheek muscle):

"Here is my latest party trick! [video, not available here]

It is difficult to see. I may draw a grid on my face to show it better. It has been happening every day, almost all day for 7 days now.

Using the muscles or rubbing my face will make it worse. Any facial expression will trigger it."

(jruddy [subject #515], Email to Klaus Podoll, February 19, 2008; additions in square brackets by Klaus Podoll)

Referring to the bilateral myoclonic jerks of upper and lower extremities, jruddy added:

"I should say, my jerking has been much better lately, it seems to me isolated to my index fingers, and though I did toss a bowl of tomato bisque a few days ago from a twitch I haven't put myself in danger while driving again lately!

I still only drive only when required though. It is too hard on my eyes and I still don't fully trust my jerking.

I am really focussing on staying calm and relaxed. Of course, I never used to jerk like this before when agitated or stressed, so I would like to have this resolved at some point - as well as be able to see properly."

(jruddy [subject #515], Email to Klaus Podoll, February 19, 2008; additions in square brackets by Klaus Podoll)

An adverse side effect of topiramate (Alonso-Navarro and Jimenez-Jimenez, 2006) has to be considered as a differential diagnosis for the multifocal myoclonus and fasciculations:

"I did find the timing [onset of muscle twitches and start of therapy with Topomax] to be quite coincidental - I keep asking about the Topamax. I am willing to go off of it I am not receiving any perceived benefit from it, except maybe not having any migraines since the middle of January. The neurologist seems to think I may just be back in migraine remission anyways, I don't mind risking regression to see if I stop twitching..."

(jruddy [subject #515], Email to Klaus Podoll, February 19, 2008)

"I have resent the first video, which shows the jerks during stress/anxiety, and the second video, which shows the marked reduction in jerks when I am relaxing.

I must say, the very first time I had any kind of jerk like this was before I started Topamax, when I was in emerg with a numb or weak leg. (I am not sure which it was, numb or weak - I think it was really weak, but I said it was numb)

It was a one-off and lasted only a few hours.

Since starting topamax, the Twitching has been worse, and there was an increase when the dose went from 25 to 50 mg per day.

I still do jerk, no matter how relaxed I am - mainly in my index finger, but also in my arms and wrists. Any kind of stress, agitation, mental fatigue etc... currently seems to cause the jerks to get worse."

(jruddy [subject #515], Email to Klaus Podoll, February 19, 2008)

"I've noticed on a few occasions that a combination of visual and audible stimulation - usually kids running around making noise, but not always, puts me into an odd foggy state of mind. I don't talk, don't move, I look around, but can't really think straight enough to interact properly. The other stimulations that do this are when I have really bad VS, as well as when I stare into a blue sky until I get 'Sky Worms'.

I'm wondering if it is psychological or part of the whole Persistent Aura experience. Does anyone else get this feeling?"

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Visual/Audible Stimulation, February 19, 2008)

jruddy [subject #515], Persistent afterimages before hearing loud techno music, 2008. "There's a very faint afterimage of the black middle buttons in the first image." © 2008 jruddy (larger image see here)

jruddy [subject #515], Worsening of persistent afterimages whilst hearing loud techno music, 2008. © 2008 jruddy (larger image see here)

"Ah - yes, malls and electronics stores - my last migraine was in a Future Shop - kind of like a Best Buy. My brother-in-law invited me to the Toronto Auto show, but I had to decline... what used to be a holy grail for me has become a bit of a hell...

And, more self-experimentation results!

I put on some loud music - I'd call it techno, but I really don't know what the kids would call it today, kind of like what I imagine rave music is like. Not really my cup of tea.

After a few minutes I did notice a bit of mind-fog, then afterimages were worse. I didn't notice any difference in VS. I did twitch a little more - not even in time to the music... lol... I noticed that while I was trying to come to terms with what was happening my train of thought kept pausing every few seconds. At first I'd lose what I was thinking all together - even mid word, but eventually I was able to hold onto the thought and catch it again after a brief pause of a second or two.

Weird eh? I think it's pretty neat. If only I had MPD [multiple personality disorder] so I'd have some friends to show this to, first hand...

It's too bad I don't feel like I can share this with my doctor - I expect he'd just look at me funny. I CAN'T imagine why... it doesn't sound crazy at all..."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Visual/Audible Stimulation, February 20, 2008; additions in square brackets by Klaus Podoll)

"Understand, these tests I'm doing are highly subjective, meaning, not objective, and not really scientifically relevant - just a bit of fun and curiosity.

I was interested to see if I saw more snow. Nope, just remote control buttons every where (afterimages...)"

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Visual/Audible Stimulation, February 20, 2008)

"Understand, I normally get afterimages on high contrast objects since getting VS. When this episode happened, the contrast threshold for afterimages seemed to drop and the lenghth of time to recover increased. So on the remote, only the black buttons would normally give me a quick, mild after image."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Visual/Audible Stimulation, February 21, 2008)

"Hi - When I have a migraine, that is, a full blown, ice pick in the head, someone please inject me with something, migraine my senses of touch, hearing and smell become super human. Well, they're hightened, anyways. I think what probably happens is the brain normally filters out the junk we don't need, but during a migraine attack, the brain filter fails, so I hear every tiny sound, feel every little fiber in the blanket or face cloth, and smell every tiny smell.

I wonder if VS, along with after images etc... could be a similar failure but in a visual accomodation circuit in our heads? I've often had a hightened level of sensory perception during my migraine hang-overs, and in some ways, this VS stuff is like a really long, really nasty migraine hang-over.

Just a thought."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Hyper-sensitive Smell, touch, hearing during migraine - related to VS?, February 21, 2008)

"Today I was trying to get some reading done for my night school (one day a week at the local university, it's paid for so I might as well continue)

I read until my vision got too bad, then out of habit I went and looked outside - this is my old trick for relieving eye strain - which this isn't... habits are hard to break though...

Anyways, it's a grey overcast day, but what do you think appeared in the sky...

Skyworms!!!!

So I can get them in grey sky as well as blue. I thought as much - but hadn't had any luck until now.

Anyways, my vision's all doubled up from reading and snow is awful so cheers for now...

Jim"

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Experimenting - Ability to change magnitude of VS, February 22, 2008)

jruddy [subject #515], Sky worms against grey sky, 2008. © 2008 jruddy (larger image see here)

"The scale and shape are much more accurate in this picture. The interior of the worms are less distinct against a grey sky, but the edges became very obvious.

jruddy [subject #515], Reading - normal, 2008. © 2008 jruddy (larger image see here)

jruddy [subject #515], Reading - after a little while (corona phenomenon whilst reading), 2008. © 2008 jruddy (larger image see here)

I noticed when reading that the letters all had developed bad glows before I developed double vision, as well the glow around my couch etc... got worse too. Perhaps the glows are related? Just a theory."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Experimenting - Ability to change magnitude of VS, February 22, 2008)

jruddy [subject #515], Corona phenomenon, 2008. © 2008 jruddy (larger image see here)

"I thought I mentioned the glow around the couch before.

It is a constant, very slim glow around dark objects against bright backgrounds. I've not seen it get as bad as the 2nd blue jay picture [from SopuliSusie (subject #405), see here] but it does get worse, especially if I've been reading. (or rather trying to read) I seem to be able to read for around an hour in the morning, maybe 15 minutes in the evening before the glow becomes top bad. If I push on, I develop the double vision. I've done this quite a few times lately and am sure this is the sequence."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Experimenting - Ability to change magnitude of VS, February 22, 2008; additions in square brackets by Klaus Podoll)

"It started with or after December 13th. I suspect it started December 13th but I didn't notice right away, it is a bit more.. subtle than some of the other symptoms... less invasive so to speak..."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Experimenting - Ability to change magnitude of VS, February 22, 2008; additions in square brackets by Klaus Podoll)

jruddy [subject #515], Central scotoma, 2008. "I woke up with a scotoma. It lasted a few minutes then receded." © 2008 jruddy (larger image see here)

jruddy [subject #515], Indoor skyworms, 2008. "The skyworms appeared and I developed awful positive after images - this lasted a few minutes." © 2008 jruddy (larger image see here)

"After a fairly good VS day yesterday, I woke up with a scotoma in the centre of my vision - I figured I was going to have a migraine, but didn't. Instead I got indoor 'skyworms' and awful positive afterimages which lasted around 2 or 3 minutes and now my VS is quite bad, which is annoying because normally the morning is my 'good time' so far as VS goes.

The positive afterimages were popping on anything of any level of contrast - my closet doors, art work on the wall, where the wall meets the ceiling, where two walls meet, my dresser etc...

I don't have a migraine head-ache - but I do have a head-ache, though that's nothing new.

I assume this is some kind of funky migraine episode. No ice pick to the head, no nausea so I'm happy."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Here's a new one for me..., March 1, 2008)

"This is the first spontaneous attack of skyworms and the first time I've seen them indoors. The other times I had to force them to come by looking at a bright field - grey or blue sky - for 10-15 seconds. The VS phenominon is always worse when I first wake up, but usually clears up. I have woken up with migraine auras which have led to migraines in the past."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Here's a new one for me..., March 1, 2008)

"I'm doing better now, just the usual afternoon snow with a little extra noise thrown in for good measure...

Before a migraine, I often get a negative scotoma that I only pick up on if I'm trying to read or look at something detailed. It turns into a grey/silver scintillating scotoma/start of an aura which is what I saw this morning. This is why I thought I was getting a migraine. It fizzled out though. I have had migraine scotomas/auras recede before but not very often, maybe 3 times in my life, not counting this morning's odd sky-worm episode.

I also saw the worms in the snow this afternoon wearing sun glasses. Er, I was wearing sun glasses, not the worms..."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Here's a new one for me..., March 1, 2008)

Jruddy summarized the sequence of symptoms during his attack of migraine with aura thus:

"1 - I woke up with a scotoma. It lasted a few minutes then receded.
2 - The skyworms appeared and I developed awful positive after images - this lasted a few minutes.
3 - Along with the worms I had a huge increase in Visual snow and other symptoms, after images, foggy mind, sparkles etc... lasted for around 5 hours. I saw Sky worms in the snow.
4 - The Visual Snow calmed down to regular levels.
5 - Around 4 hours later I developed a pretty bad headache - but not a migraine but worse than the headache I had earlier.
6 - Advil has taken care of the headache but now my vision is awful again, but it is evening and it's been an interesting day so I'm not surprised."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Here's a new one for me..., March 1, 2008)

"The memory and thinking problems have been going on since the VS started and I think it has been worse since starting either the Topamax or the Citalopram.

I do know that I had some memory loss with some migraines in the past, that is, I could not recall what I had experienced, and ended up creating migraine logs to track their sequence... so it is possible the memory problems are associated with the persisting aura.

I can tell you that every morning the VS is worse for me - but I don't think I've had a migraine episode. Usually it improves pretty quickly then slowly degrades throughout the day. I don't recall the timing for the improvement, I can check the next few mornings and let you know.

I can take a 5 minute nap and when I wake up my VS is much worse. Even if I just close my eyes for 5 minutes and don't sleep, the VS is worse when I open them..."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Here's a new one for me..., March 2, 2008)

"The Neuro is upping my Topamax from 50mg to 100mg, @ 12.5mg per week increase - stopping if the snow ends.
Also he's referring me to another doc and sending me for an emg for the weakness problems.

My faith in specialists has been restored... lol

Thanks to Dr Podoll for asking me to make the pictures, both my GP and the Neurologist found them useful and instructive. The Neuro also thinks the skyworm phenominon is migraine aura related."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - 2nd Neuro Visit - went pretty good, March 3, 2008)

"I woke up in the middle of the night with electric shocks (really bad paresthesia I assume ) in my right hand - which I've been having a lot in my hands and feet lately and blaming it on the topamax - and my thumb had a wicked tremor in it - around 2 Hertz - 1 cm deflection. The tremor continued until the electric shock sensation stopped.

I've had tingling in my hands and feet for years now, ever since a B12 deficiency, but nothing like these recent 'shocks' - and I've never had such a huge tremor before - more like little vibrations.

I just went from 50mg to 62.5 mg of Topamax on Monday so I'm back to thinking the Topamax might be causing some extra issues. But if it clears my vision up, I'll deal with it."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - 2nd Neuro Visit - went pretty good, March 5, 2008)

"From what I've found on-line, dream images are processed in the visual cortex 'not the primary visual cortex that interacts with the outside world, but the visual association areas that form hallucinatory images'. If VS is a hallucinatory function of a malfunctioning secondary visual cortex, then it would follow that we should always see VS in our dreams, but at least some of us don't...

So as far as my layman's understanding goes, this lack of VS in the dream only leaves the neurological connection between the eyes and the visual cortex - the optic nerve bundle, some kind of issue in the primary visual cortex, and psychological causes, no? But if VS et al are supposed to be hallucinatory shouldn't the malfunction be in the secondary visual cortex and as a result, shouldn't I see VS in my dreams? The logic doesn't make sense.

The only thing I could hypothesis, as an ignorant layperson, and a data interchange specialist, is that there is a hand-off of information from the primary visual cortext to the secondary visual cortex and somehow the data is not in the expected format - perhaps some noise is being introduced somewhere or maybe the voltages are too high or to low -maybe some cross talk between nerves - that sort of thing. The secondary visual cortext is expecting data within its programmed tolerances and isn't receiving it, and as a result it generates these hallucinations that we are seeing.

I expect that for some people VS, even without migraine, might be a condition that is similar to epilepsy, maybe a distant cousin. Since my sister and her son both see VS in the dark, I expect there is a genetic link to the abnormal electrical activity that manifests itself as VS. But, since VS isn't well known nor terminal, I don't expect much in the way of genetic profiling to happen in the near future... This would also explain why anti-seizure drugs work for (at least) some people's VS.

I don't mind not seeing VS in my dreams, a few days ago I dreamed I was laying on my back, looking at a beautiful blue sky with great puffy clouds like I used to do as a kid. Then I realized there was no VS, then I realized I was dreaming and woke up. It was bitter sweet. At least I had that moment of 'respite'."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - I don't understand why I don't see VS in my dreams?, March 28, 2008)

"So because dreams originate from the 'mind' (memory, emotion etc...) as opposed to the eyes, they don't go through the same process and are not effected by the mechanism that is causing the VS.

It's interesting that I can not turn off the VS - if I recall an image or event it is still overlayed with VS. I will continue trying and see if I am able to overcome this. I would expect that I should be able to recall a pre-VS event without having VS imposed on the memory. Or is this simply some trick of the conscious mind?"

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - I don't understand why I don't see VS in my dreams?, March 28, 2008)

ipdonkey, Numb Trailer - Depersonalization Disorder, 2008 (see here)

"Wow, I really never understood what people meant by depersonalization so I assumed I didn't have/get it.

I watched the trailer [ipdonkey, Numb Trailer - Depersonalization Disorder, 2008 (see here)] and saw something of myself in the main character.

So, yes, I get sparodic bouts of depersonalization - it gets better and worse at times, though usually I do not suffer from it.

Also, I believe that when I first was blessed with VS, I was what I've called emotionally numb. There were elements of depersonalization to this numbness. If I recall, it lasted a few weeks. It may have been two weeks.

It seems that a situation where there is a lot of visual or audible stimulation will trigger this depersonalization. I've been assuming it was a psychological response, perhaps anxiety, but now I'm wondering if it is a VS response as I hadn't had this response before aquiring VS, that I can recall...

Anyways, looks like a great movie, I hope my brain clears up enough to watch it!"

(jruddy [subject#515], Yuku forum Visual snow or static - General discussions - Movie about depersonalization/derealization, March 29, 2008)

"The way I've felt is kind of like an odd detachment from the world - like I've shifted 1/2 of a dimension out of place. I look around at the people around me and it is very much like the scenes in the movie - surreal - detached - dream-like. I've been assuming it was an anxiety response or some weird efect of the topamax. Sometimes I feel like my hands aren't mine. (Like right now.) Sure they work and I can feel them, but they are kind of weird to look at while they're typing, like they're someone elses hands. Again, I figured it was the Topamax messing with my head.

I *think* noise brings on DP for me but I'm not too sure. I wonder if what I call 'fog brain' is actually a form or level of DP? I'll have to keep an eye on that."

(jruddy [subject#515], Yuku forum Visual snow or static - General discussions - Movie about depersonalization/derealization, March 30, 2008)

"Firstly, the EMG was a hoot. There is something of a masochist in me I guess, I really got a kick out of the shocks the Technician was giving me. (No pun intended)

The NCV was not much to mention, I barely felt the tiny needle.

In the examination, weakness was evident in my left arm, I'm not sure if he could detect it in my left leg.

Plantar reflex was absent which is a good thing! (No Babinski's sign!)

Reflexes are very brisk, welcome to my world. I almost kicked him between the legs, lol.... he should know better.

The best news, the EMG and NCV were normal. Benign fasciculations were present. I blame the topamax. I've been fasciculating like crazy since my dose went to 100mg.

The 2 Doctors I saw suspect:
- Hemiplegic Migraine
- Something Genetic Passed on from my Mother who doesn't really have MS
- 'Something Else' in the Brain or Head

Blood & Unrine work up including Thyroid has been done, waiting results. I forget what else was on the order sheet.

I Booked a Muscle Biopsy - they gave the option and I figured what the hell, it can't hurt that much, can it?"

(jruddy [subject#515], Yuku forum Visual snow or static - General discussions - Neuro Muscular Clinic - Appointment, EMG & NCV results, April 1, 2008)

"Enjoy the EMG - seriously, if you've ever checked to see if a 9v battery was good by sticking it on your tongue, you're in for more of the same, only more surprising....

I've had 120v and 220v through me a few times while working with an industrial mechanic, fixing a dishwasher, etc... and even an arc welder mishap repairing the centre stand on a motor cycle (I wonder if any of those scrambled my brains? lol ) the EMG was far better than any of those!

Thank goodness I've been trained to keep one hand safe and have only ever had the current go through my hand, not my chest!!! (And when arc welding, always wear a glove, even when making a quick spot... it saves you from arc-sun-burn and the live screw in the handle doesn't cause you a problem when you rest your hand against the bike to steady it...! - WHAM)"

(jruddy [subject#515], Yuku forum Visual snow or static - General discussions - Neuro Muscular Clinic - Appointment, EMG & NCV results, April 1, 2008)

"I also have clonus. The doctor was very surprised 'You have Clonus!!!'

I said 'ya I know...'

He just sat there holding the ball of my foot as my leg bounced...

I said 'It won't stop...'

He looked at me odd and checked the other leg... same thing... he was a little surprised.

I'm not sure about the biopsy. They are very thorough and I really don't mind. The risks are very low so I'm willing to go through a little pain.

My Neuro knows about the Clonus, he doesn't seem to be bothered by it, I've had it for 20+ years... so unless I've had an undiagnosed condition all this time it should be benign. It's just another of my growing list of party tricks."

(jruddy [subject#515], Yuku forum Visual snow or static - General discussions - Neuro Muscular Clinic - Appointment, EMG & NCV results, April 1, 2008)

"My visit to the Migraine Neurologist today (quick follow up) went ok. I was able to introduce a bit more information (sister, nephew's VS, mother's MS that isn't MS, how the Neuro Muscular clinic went) and discussed my current status so far as migraines and VS goes.

I haven't had any full blown migraine attacks, but I am still having the VS and odd aura symptoms.

He has given me free reign to either continue at 100m g of Topamax or slowly reduce to whatever level I want, be it 50mg or right off. He hasn't offered an alternative to Topamax.

So what do you think? Besides bad tingling (expressed as 'electric shock sensations') in my hands and feet, temporary loss of appetite and possibly tiredness, I can't say what other symptoms I have are Topamax and what are migraine or Citalopram or depression or anxiety or undiagnosed 'other' problem...

Bothersome problems:
- Memory Loss
- Increased Mood swings, Shorter Temper than even usual for my Irish blood...
- Mental Exhaustion, though this seems to be getting better I do need more sleep than normal to function
- Shakey Hands, jaw, face etc... - noticed in neuromuscular clinic - they thought I was nervous - I didn't think I was, I was having a good time actually.
- Twitches, Jerks, Fasciculations in hands, legs, arms and face

So what do you think - stay at 100 mg or drop to 75 mg."

(jruddy [subject#515], Yuku forum Visual snow or static - General discussions - Topamax - pick my own dosage..., April 3, 2008)

jruddy [subject #515], Lamp light on ceiling seen against usual level of visual snow, 2008. "Standard Evening VS." © 2008 jruddy

jruddy [subject #515], Transitory worsening of intensity of visual snow and autokinesis induced by acoustic stimuli, 2008. "Worse VS and wobbly lamp shine on ceiling with audio stimulation. It didn't need to be very loud tonight. I normally listen in bed at lower volume with noise cancelling headphones on. Turning the noise cancelling off doesn't make a difference either. My tired mind can't figure out how to get the VS to dance and the light to wiggle at the same time..." © 2008 jruddy

"Confirmation of relationship between sound and my VS.

I was relaxing, listening to an audio book and I had the volume up much higher than usual.

I was laying down and there was a pattern on the ceiling from one of the lamps. It was dancing/wiggling/vibrating. I thought maybe the filament was going in the lamp (it is an old incandescent bulb) and asked my wife if the pattern was moving, she said no and actually showed a rare bit of pity for me.

She complained that she could hear the audio book so I turned the volume down and shortly after the light pattern on the ceiling stopped dancing/wiggling/vibrating.

Intrigued I turned the volume back up, and almost immediately the pattern started dancing/wiggling/vibrating again.

The time was around 9:45 p.m., when my VS is usually bad anyways. I did notice the second time that my VS did get courser/grainier with the louder audio stimulation.

Shortly afterwards my wife turned out her lamp (such is life with two small boys) and the experimenting ended.

This supports my previous experiment with loud techo music and increased after images. I do seem to have some kind of connection between audio stimulation and VS.

Now, how do I tell my Neurologist this... and will he care?

Edit - I was having increased myoclonic jerks with the louder noise as well. I really do wonder if Migraine and Epilepsy are more brother and sister than distant cousins..."

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - Confirmation of relationship between sound and my VS, April 6, 2008)

"Lamp light on ceiling - regular [here].

Lamp light on ceiling - high octane - (or high volume) link is below [here] for the brave and curious... It's not perfect, but it's pretty close. The amplitude is a bit exaggerated, but not by much but enough that I feel like fixing it and the snow shouldn't really be moving with the lamp, at least not that I noticed but I can't figure out how to fix that. I think some migraine/VS sufferers here would say there is something quite familiar and migraine-like about it though, but I can't put my finger on it.

Maybe it's the speed of the movement?

Bleh, I feel ill! ha ha...!!!

Updated image is below [here]. It is much more accurate and much less vomit inducing... though the snow doesn't do the 'snow' thing... and I forgot to change the graininess in this version... rats..."

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - Confirmation of relationship between sound and my VS, April 8, 2008; additions in square brackets by Klaus Podoll)

"I've reported my twitching thumb a few times, including one night when it woke me from a deep sleep, but I managed to catch it on film tonight. Unfortunately the big twitch had calmed down before I thought to get the camera, these are smaller 'after twitches'".

The twitching always seems to be preceded then accompanied by bad tingling in the the fleshy part of the palm near the thumb that spreads up the thumb itself. It is always my right hand. The Neuro-Muscular clinic believes I may have hemiplegic migraines - the problem seems to be on my left side though. I've also had problems with my right knee wobbling today - it felt like a reflex action, I do have clonus in both legs, have had it all my life, it 'felt' similar to the clonus bounce... I've had these problems with my right knee since getting VS before and ended up falling down twice because of it.

I still assume this twitching is a Topamax side effect, I'm going to start ramping down next week and I'll see if the problem gets worse or better.

Video file here.

FYI, I've had a rough 4 or 5 days with almost constant headaches, only 3/10 on my pain scale, the VS has been worse, tinnitus also worse than usual, brain fog attacks 2 or 3 times a day, weakness/muscle fatigue is worse, mental fatigue is worse.

jruddy [subject #515], Transitory dysgraphia, 2008. "Today for around 10 minutes I couldn't write. Well, I tried to write 'Between now and June 5th' I eventually got the 'B' done and it looked like my 3 year old wrote it, it was wobbly and the two bumps were mis-sized, and it took me around 5 seconds to make it... It looked something like this..." © 2008 jruddy

And something new! I expect it may have something to do with the clumsyness moving to my right side - today for around 10 minutes I couldn't write. Well, I tried to write 'Between now and June 5th' I eventually got the 'B' done and it looked like my 3 year old wrote it, it was wobbly and the two bumps were mis-sized, and it took me around 5 seconds to make it...

It looked something like this [see above]."

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - KSomething - For your enjoyment - Caught on film - twitching thumb!, April 23, 2008)

jruddy [subject #515], Self-correction of dysgraphic letter "B" in the word "Between", 2008. © 2008 jruddy (larger image see here)

"After the writing came back I wrote a B over the B to make the word 'Between'." [see above]

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - KSomething - For your enjoyment - Caught on film - twitching thumb!, April 28, 2008)

jruddy [subject #515], Dysgraphic letter "B", 2008. © 2008 jruddy (larger image see here)

"I have tried to edit out the corrected B to show the original problem - keep in mind it took me around 5 seconds to make the B."

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - KSomething - For your enjoyment - Caught on film - twitching thumb!, April 28, 2008)

"The writing attack came on April 23. For all I know it was stress related, or a combination of things. I do know I was experiencing a lot of typical brain-fog and weakness symptoms that day (or rather that week) so who knows... they do seem to feed off each-other like a snake devouring its tail."

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - KSomething - For your enjoyment - Caught on film - twitching thumb!, April 28, 2008)

"It feels like a fasciculations to me, it just pulls the whole thumb when it goes, but I expect you would be better suited to make that call... It can get quite strong sometimes, moving the thumb a good centimetre - this is what it was like before I grabbed the camera, and also what it was like when it woke me up from a deep sleep. It is mildly uncomfortable - as you can see at one point I massaged the tingling out as it was starting to feel more like shocks than tingles, and after the twitches were reduced."

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - KSomething - For your enjoyment - Caught on film - twitching thumb!, April 24, 2008)

"No Surprise, Insurance Company Denying Claim

The Long-Term Disability company that my employer uses has pre-emptively denied my claim. (The name [here] rhymes with Sun Wife.)

My doctor wasn't surprised, though it is the second time I've heard him swear, (he called them a bunch of A-holes). He's appealing the decision.

My Short-Term Disability runs out June 5th, my employer will keep paying me 85% until then, but they wanted me to come back part time - that is until I went in for a meeting and they saw first hand how fekked up my mind is and imagined the fallout from me messing up one of our top customer's data integrity. Oh, sorry Mr (Biggest Soft Drink Company in the USA), no Maintenance data going to financials for you this month... I accidentally erased it... wait, who am I talking to? Oh, it's (Electricity Company for a Carribean Island), shoot, well.. what script did I run? Um... Can I, ah.. call ... um... you back I'm... sort of... seeing ____ double and ____ er ____ um ____ what was I saying?

On a positive note, I'm going to see a neuro-ophthalmologist, no date picked yet, and I'm going back to the psychiatrist for another evaluation as I have been feeling rather out of sorts for a few weeks now, angry, frustrated, like I want to chew bricks or try and cut down a tree with my forehead or somefink... maybe if Sun Wife doesn't understand my brain problems they can understand my emotional/psychological issues... maybe I have GAD afterall... I dunno... whatever.

My loverly wife makes enough cashola to float our lifestyle with a few small changes so I'm ready to fight those greedy insurance pigs all the way to court.

Cheers."

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - No Surprise, Insurance Company Denying Claim, April 25, 2008; additions in square brackets by Klaus Podoll)

After having read about CK's (subject's #560) monosymptomatic persistent aura consisting in hypersensitivity to light, jruddy noted:

"If photophobia is a symptom of PMA, then I may have had PMA when I used to suffer regular migraine attacks years ago.

The migraine attacks ceased but I still suffered significant photophobia for months, maybe even for over a year after. I just assumed it was normal for migraine sufferers??

I eventually got mostly better, though ever since camera flashes have caused me significant physical discomfort and mild pain in the back of and behind my eyes, not to mention the spots that last for 10 minutes or longer... the retinal scan at the ophthalmologist was near torture...

I believe my sister [subject #530] also suffers significant constant photophobia, as does my father, I'll have to double check that though."

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - Participation in Sofia Greene survey at day 8 of PMA, April 26, 2008; additions in square brackets by Klaus Podoll)

"It was many years ago, I can't give you a complete list of all the times, I can say for certain that I had photophobia for at least 6 months, perhaps more, in 1995."

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - Participation in Sofia Greene survey at day 8 of PMA, April 26, 2008)

In the 6-months period from summer 1995 to winter 1995/1996, "I was having regular migraine attacks, between 1 and 2 a week, and constant photophobia - pain and discomfort from any significant light levels. This resulted in me wearing sun glasses outside all the time and keeping the light in my appartment subdued. The migraine attacks ceased but the photophobia continued for at least 6 months, it gradually got better, I can't say for certain how long it took, but I am sure it was longer than 6 months - the migraines ceased in the summer and I still had the photophobia symptoms in the winter when I visited my family for Christmas. I also wore lighter shaded sun glasses for driving at night. I just assumed it was part of the recovery process...

I have had a mild light aversion for many many years, perhaps my whole life - I'm not sure, I hate bright lights. I know my father at least has this aversion, I need to talk to him about his migraines and see if the photophobia he gets with them ever persists.

My sister [subject #530] wears sunglasses outside all the time because of her aversion to light. I need to determine if this is a mild aversion or clinical photophobia. Any advise on how to seperate the two?"

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - Participation in Sofia Greene survey at day 8 of PMA, April 26, 2008)

"I have been on 100 mg of Topamax for a while now. I haven't started tapering down yet, we're having thunder storms this weekend and I have an exam Monday, so I plan to drop to 75mg on Tuesday and see what happens for a couple of weeks.

Worsening ca. April 18/19, 2008, was not preceded by severe migraine attack or stress, though I did have an increase in stress April 22, 23 and 24, 2008, and psychological symptoms increased accordingly. Major stress factor was relieved afternoon of April 24, 2008, and finally today I am finally back down to pre April 18, 2008, levels. I have been studying for an exam (finally done that bloody course - exam Monday - no more courses until my head clears for God's sake!!) which puts added demands on my brain and eyes - I expect this has actually been a big factor in my VS et al issues lately."

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - Participation in Sofia Greene survey at day 8 of PMA, April 26, 2008)

"I slowly increased Topomax from 50 to 100 mg, in 12.5 mg steps. I see that on March 17 I was at 87.5 mg so I must have started stepping up around March 3rd which coincides with a neuro app't I had. I would have been at 100 mg around March 24.

I'm going to drop to 75 mg tomorrow, then next week, if I have no ill effects, I will drop to 50 mg. I'll stay at 50mg for a little while, maybe a month, and see how I feel. If I have no ill effects, and seem to have any long term improvements in thinking, fatigue etc... I will try to get off of it.

If nothing changes at all I will probably stay at 50mg, just to keep the full migraine attacks away.

If I feel worse, I will slowly step up until I feel better."

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - KSomething - For your enjoyment - Caught on film - twitching thumb!, April 28, 2008)

"Sensation of Cold/Wet spot. Does anyone else get sensations of cold and wet spots?

I've been getting it maybe once every couple of weeks since the VS started and so never really complained to anyone about it, mainly in an area above my right ankle around 2 inches wide by 3 inches high. It literally feels like a cold wet spot with distinct border, it doesn't gradually fade out, but has an edge to it. Even though it 'feels' cold and wet, when I actually touch the area with my hand it is dry and is the same temperature as the surrounding skin.

Any idea what this is called? Anyone else get this? Should I mention it to my neuro / gp? I assume it is a similar phenominon to the paresthesia I get, though it is an odd place for it (and an odd, cold, wet feeling, lol)."

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - Sensation of Cold/Wet spot, April 30, 2008)

jruddy [subject #515], Second car accident, May 2007. © 2007 jruddy (larger image see here)

"Well, I had to go and mention the 2 car accidents, didn't I... it was in self defense though, I was explaining that I was in two traumatic events in a year with no anxiety so why the hell would it start now?

But I guess tangling with a semi in a snow storm then being taken out by a pick-up truck in a parking lot within a year (neither my fault, thank you) doesn't do much for one's psychological evaluation. It seems that even rocks like myself get worn away by the river of stress and the accidents just may contribute to my current mental state. I'm upping the ole Citalopram, but I don't mind. I'll see what happens and if it doesn't help, I'll just taper off again. I'm on a schedule to get up to 50 mg, I guess I have some anxiety issues to deal with. I asked and was told I have not been diagnosed with GAD, something more like PTSD, but not PTSD...

He also mentioned temporal lobe seizures in an off hand manner but then decided that my neurologist would be the best to handle the DP etc... problems which I had started to assume were psychological but I guess aren't...

Talk about confusing.

The Semi changed lanes into me, quick thinking and I got mostly out of his way, but he did a little damage to my rear bumper which I kindly offered to let the driver pay for out of his own pocket rather than lose his job and possibly his license.

The pick-up didn't stop at a stop point in a parking lot and totalled my car. I didn't see him coming due to the 'plethora' of tinted windowed mini-vans. (ok the one mini van)"

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - Latest app't - Psych., May 2, 2008)

"Naw, last spring - around a year ago. I don't really get where the psychiatrist was going, but I guess in certain people things can take years to digest... like a 16 oz steak.

I admit I was acting weirdly after the accident, all I could think of was, yay, now I get to go car shopping. Well... it WAS spring afterall!!"

(jruddy[subject #515], Yuku forum Visual snow or static - General Discussion - Latest app't - Psych., May 2, 2008)

"I can't recall the exact dates - I'll see if I can find the information.

Ca. January 2007 - tangled with tractor trailor in snow storm.

Ca. May 2007 - pickup truck totalled car.

The psychiatrist indicated that I don't have PTSD, but rather something in the same catagory or family is causing anxiety problems, ie. current stress and past trauma are building up and causing problems. He believes that I have two conditions, a psychological and a physical condition. The physical condition would be the migraine condition, the psychological would be parallel and aggrivated/triggered by the migraine and past accidents. From what he said, I gather he doesn't believe the vision problems, the weakness, or the derealization are psychological. Just the wicked mood swings, feelings of extreme frustration, irritability, etc... he says things have built up and finally became too much for me to digest. I don't really know, but I'll try upping the citalopram and see what happens.

I do not meet any of critereon C or F [of the DSM-IV criteria for Post Traumatic Stress Disordersubject #515], but other than that I meet the rest. We did discuss Criterion B: intrusive recollection at length, it was much worse closer to the accidents, but I do still occasionally have the occasional flashback.

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - Latest app't - Psych., May 5, 2008; additions in square brackets by Klaus Podoll)

"I was not diagnosed with either GAD or PTSD. It seems to be a trauma and stress induced depressive/anxiety thing, if that makes sense? It was explained as similar to PTSD, but not quite.

What do you think of temporal lobe seizures for derealization? I don't recall having smells or tastes, but there is some DEJA VOUS and I do stare and it is really hard to explain what the experience is like or interact ith the world. The majority of the attacks come during or immediately after eating. I think this is why he made comment (then seemed to regret making it). Just how much overlap is there between epileptic seizures and migraine aura attacks?

I understand some studies show there is significant comorbidity between epilepsy and migraine, but not between migraine and epilepsy (it seems to be a one way connection, people with epilepsy have been shown in studies to have a high rate of migraine as well, though perhaps over-diagnosed or mis-diagnosed, while migraine sufferers are only slightly more likely to be epilepsy sufferes than the general public)

But when I read up on partial temporal lobe seizures, I really start to think, wow, is there a grey fuzzy area between the two diseases and am I in it?"

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - Latest app't - Psych., May 5, 2008)

"Oh yes, the intrusive recollections were fairly immediate after each accident. I'd say within 24 hours.

They would be triggered though, by being in a similar situation."

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - Latest app't - Psych., May 5, 2008)

jruddy [subject #515], First car accident, May 2007. © 2007 jruddy

"I don't have any pictures of the first accident. I didn't have a cellphone with a camera at the time It was just damage to the rear bumper skin.

Here is a Gif of the accident. The big black blob is the semi, the little black blob is my car. The long line is a concrete barrier. It was snowing badly, the road was bad, traction wasn't good, but I managed to almost get out of the way, somehow I didn't spin out, I just kept on the power and luckely I grew up doing stupid car tricks in the winter in mall parking lots, so I recovered. I'm sure a lot of people would have ended up crunched into the barrier or under the front of the truck."

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - Latest app't - Psych., May 5, 2008)

jruddy [subject #515], Morning aura, 2008. © 2008 jruddy

"I discussed a bunch of things with my Neurologist today.

Down to 50mg of Topamax

---- Now almost daily morning 'aura-like-disturbance' with no migraine, I will stay at 50 mg for fear of morning migraine attacks.

---- No significant or noticeable overall increase or decrease in Myoclonal Jerks

---- No change in Tingling/Electric Shock, Still occasionally getting sensation of cold wet spot above ankle.

---- No Full Migraine Attacks

Depersonalization Attacks

---- Discussed at length, I will be sent for an EEG to try and spot Temporal Lobe Seizures

---- May try another drug, to arrest but not yet. Will wait until I'm done upping the Citalopram.

Effect of Sound on VS

---- Discussed Worsening of VS with sound

---- Neuro was intrigued by it but he did not seem to support synaesthesia theory. Such is the medical world!

---- Possibly some kind of partial seizure?

Still no news from Neuro-Muscular Clinic

---- We both asked the other if we heard news from the Neuro-Muscular Clinic. lol

---- Muscle Biopsy is next week. I said, 'what the hell, it can't hurt.' (ba-dum-bum) Oh yes, my sense of humour is back, someone take my happy pills away before someone is permanently injured, would you?

Cheers
Jim"

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - KSomething - Latest Update - Neuro Visit, May 7, 2008)

"Here is the morning aura - it looks more like the fortress aura that people mention. It doesn't scintillate any more than the snow does and goes away pretty quickly - within 2 or 3 minutes."

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - KSomething - Latest Update - Neuro Visit, May 7, 2008)

"I've been having them intermittently since the VS started, but they got worse in April and have been coming every day since around April 30th."

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - KSomething - Latest Update - Neuro Visit, May 7, 2008)

"Since the VS started, when I first wake up the VS has always been very bad. Within maybe 5 minutes it settles down. I did wake to two migraine attacks before starting Topamax. I've combined the layers on the image so changing the individual parts will be tricky, but I'll see what I can do."

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - KSomething - Latest Update - Neuro Visit, May 7, 2008)

"What I find really interesting is how my vision problems go haywire with high contrast things like this coat, text on a page etc... and low contrast objects, like a painted interior wall. Add in flourescent lighting and the problems seem to double.

In contrast, I spent a couple of hours in the bush yesterday (getting shot by paintballs - it sucks not to be able to run like I could a few months ago...) and the vision problems were minimal until dusk started to set in and contrast/light levels got too low. By then I had enough Tè Bheag [a whisky called Tè Bheag nan Eilean (literally "small one of the islands"), produced by the company Praban na Linne] in me that I didn't care that my vision was messing up, we were pretty much done except for a few rounds of '1812' (which is just a quick way for painballers to shoot eachother a bunch of times before going home) anyways.

I did notice even the minimal VS did reduce my ability to pick up movement at a distance, which is no surprise - my whole field of vision is moving... lol, but it wasn't too bad of an experience until my left leg went partially dead on me and I started falling over... ha ha... bloody hemiplegic migraine.

At least I'll have some interesting bruises for the team to see during my muscle biopsy on Tuesday.

Cheers.
Jim"

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - do houndsooth coats make you want to run???, May 10, 2008; additions in square brackets by Klaus Podoll)

"Lately when the paraesthesias in my arms and hands have been bad, they've also started to feel 'twisted' or contorted out of shape. Yesterday for a few minutes I swear my left arm felt like my palm was face up, but it was really face down."

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - do houndsooth coats make you want to run???, May 16, 2008; additions in square brackets by Klaus Podoll)

"OK, the latest thing identified by my Neurologist is possible Narcolepsy... sheesh!

- Sleep Paralysis (only once)

- Cataplexy - noted when laughing - most of my life - magnitude of weakness varies - collapsed three weeks ago from mild laughing, have never lost consciousness.

I thought everyone got weak when they laughed. I have fallen down a bunch of times when laughing since I was a kid, people did look at me odd, probably thought I was goofing around... I am a bit of a goof afterall...

So... with the Neurologists I've seen I'm up to:

Migraine (Complicated, Possibly Hemiplegic depending which neuro I talk to)
Probable Simple Partial Seizures - Temporal Lobe - not caught on EEG
Probable Narcalepsy
Possible mtDNA disease 30% chance, waiting for results.

Plus depression and anxiety which are being treated quite effectively with 40mg citalopram (Celexa).

We're not treating the seizures, we talked about a drug, I think it was Carbamazapine, but I decided I didn't like the sound of it, and we both agreed I'm better off without it for now.
The same goes for the Narcalepsy, we talked drugs and decided the limited problem (Mild Cataplexy, daytime sleepiness, sleep problems) isn't worth the side effects.

The good news is I think I'm done with tests, there's nothing left for me to take or do but move on and figure out what I can do.

Of course I'm still off work and have these medical issues, but hey, when it comes down to brass tacks, at least I have my health.

Cheers
Jim"

(jruddy [subject #515], Yuku forum Visual snow or static - General Discussion - Good Lord, not another diagnoisis..., May 28, 2008; additions in square brackets by Klaus Podoll)

jruddy [subject #515], Visual snow in a lucid dream/nightmare, 2008. © 2008 jruddy

"I recently had VS in a lucid dream/'nightmare'.

The dream became lucid when I realized I did not have VS, (a-ha I'm dreaming) but then very bad VS appeared in my perhipheral vision and started to move inwards, I struggled with the VS, trying to force it back out, (this was the nightmare part) but I eventually failed and the dream ended with me waking up. I don't recall the VS being any worse than it would be waking in the middle of the night which is always bad anyways. It certainly wasn't anytyhing like it was in the dream, which was opaque and opressive.

The dream seemed to be a psychological manifestation of my struggle with VS rather than a physical phenominon, I don't normally see VS in my dreams.

Cheers.

Jim"

(jruddy [subject #515], Yuku forum Visual snow or static - General discussions - Visual snow experienced in dreams, June 2, 2008)

"I returned to sleep a few moments after waking. When waking at night or even after a short nap (or even closing my eyes for a few minutes) the VS is always worse.

I can't recall the pre-VS topic of the dream but I can recall the VS aspect - it was quite artificial. I will try and make a series of pics or an animation."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussions - Visual snow experienced in dreams, June 2, 2008)

"It took longer and I did push it out but it eventually collapsed, but it kind of looked like this. Not at all like my real VS, more like a caricature.

I still think it was psychological."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussions - Visual snow experienced in dreams, June 2, 2008)

"As I mentioned in another post, my sister [subject #530] now suffers from odd migraines, for example, in some attacks, half her vision goes black in each eye.

I spoke to her tonight - I asked her a direct question: When you are in a dark room, what do you see?

She sees gold sparkling donuts, swirls and lava flows... she always has and assumed everone did...

I had her ask her 12 year old son [subject #531], when he is in a dark room, what does he see...

'Everything is pixelated.' With clarification I determined that he sees visual snow in dark rooms, much like I did at his age.

Her husband just sees darkness as does my wife.

Coincidence or familial connection?"

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - KSomething - Interesting data - Family connection?, February 28, 2008; additions in square brackets by Klaus Podoll)

"I have asked everyone I know to check - only my Sister [subject #530], Neice and Nephew [subject #531] see grainy, snowy in a dark room.

My wife, mother, father, brother, mother-in-law, father-in-law, brothers-in-law, sisters-in-laws, co-workers, boss do not see grainy or static in a dark room."

(jruddy [subject #515], Yuku forum Visual snow or static - General discussion - Has VS ever led to blindness, April 25, 2008; additions in square brackets by Klaus Podoll)

References

Alonso-Navarro H, Jimenez-Jimenez FJ. Reversible tremor, myoclonus, and fasciculations associated with topiramate use for migraine. Clin Neuropharmacol 2006; 29: 157-159.
Jacome DE. Compulsive yawning as migraine premonitory symptom. Cephalalgia 2001; 21: 623-625.
Podoll K. Alwa Glebe's imitatio Nietzsche: On elective affinities of migraine-inspired artists. In: Rose FC (ed) The Neurology of Music. Academic Press, London 2008 (in press)
Schoonman GG, Evers DJ, Terwindt GM, van Dijk JG, Ferrari MD. The prevalence of premonitory symptoms in migraine: a questionnaire study in 461 patients. Cephalalgia 2006; 26:1209-1213.

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