Click here to have your say on the changes to this website
This is the final part of a three part series. You can go back to part two from the links at the top and bottom of this page. Or you can jump to any part from the PMA & Visual Snow FAQs page link.
Don’t forget to read the Migraine Daily News round-ups of articles on migraine, visual snow and related items! Click here to go to the posts section: http://www.porillion.wordpress.com
To finish this short series, I’ll relate my own experience. This list of symptoms may be of interest generally and to anyone with persistent aura or visual snow.
I’ve always or long had a few symptoms which I thought everyone had:
- Swirling pink-purple and green patterns in the dark. These repeat with change. I don’t always get them and they don’t usually last long.
- Spontaneous afterimages. These are rather like anyone would get if someone flashed a bright torch in their eyes at a distance. Except they pop up without any light source. They also take a while to disappear. The brightest and largest ones can last half an hour or more.
- A rushing, whistling, whining sound in my ears. This is called tinnitus. In my case I get several distinct but faint sounds all across my stereo field.
Because these hadn’t caused any problems I hadn’t bothered with them. Then just under three months ago I suddenly got a lot more symptoms. My GP diagnosed persistent aura, including visual snow. My specialist has confirmed the diagnosis:
- Something called Scheerer’s Phenomenon. This is where you see short-lived and fast-moving squiggles. These are normally seen against bright uniform fields like white walls or blue sky. You can see these normally without any pathology. Though not everyone does. They are how the brain interprets ‘gaps’ in the blood supply to the eyes caused by white blood cells. In my case it is constant in the right conditions.
- Visual snow itself. At first I confused this with Scheerer’s Phenomenon. Visual snow is like the static you get on an analogue TV in a poor reception area. It’s been described as like “seeing the air” and is also called aeropsia. In my case I see it in dim or dark conditions and it is pronounced most times. It is constant in the right conditions in my case. Though it did go away for a few minutes one night recently.
- Something I call sparklers. These are like exploding fireworks. In my case they take place at the centre of my vision. They usually happen when I go from looking at a bright scene to a darker one. Sometimes I see them while still in a bright scene. I get these most days. They last a second or two each time. They are usually green or orange in my case.
- Fasciculation(?) Localised involuntary twitching or nerves or muscles. These vary from day to day in frequency. Each event can last a second or two or for several minutes. The actual frequency of twitching can be a twitch every second or two to many times a second.
- Pinpoint flashes. These are hard to spot so I’m not sure how often I get them. They may be short lived spontaneous afterimages. The name I have given them describes them perfectly.
- A kind of scintillating scotoma I call “aurora”. These look a bit like the Northern or Southern Lights. But they are colourless. I get my aurora in my right field (side) of vision in darkness. It happens most times I go from lit to dark conditions. It lasts a few minutes before fading away. It is dimmer than the scintillating scotoma I get before a hemiplegic migraine attack. It is reactivated by light, even with my eyes closed.
- Another visual symptom I see in my centre of vision is something I call a “capillary”. This is because it resembles in many ways videos of red blood cells pumping through a capillary. Except that the ‘cells’ are white ringlets. They even pulse. I usually only see them in brightly lit conditions against a white field. Very rarely they end with a spontaneous afterimage. Worried about this, I asked my optometrist about them. After examining my eyes she said I had no damage. So it wasn’t a blood vessel bursting! Also there are no blood vessels in the centre of vision. These seem to happen more in my right eye.
- I also get a single stationary ringlet in the centre of my vision. Recently this has lasted several days. I see it when I blink. I now realise it is in my right eye and is a spontaneous afterimage that won’t go away. Though it has faded again. Usually I see this rarely.
Some rare visual symptoms I get are:
- Starbursts or rays. These look like short but very bright rays with patternation within them. They emerge from very bright usually point light sources such as the sun reflecting of a metal tap (faucet). They give the appearance of something like one of those floating seeds like from cotton. Except they shine. Very pretty!
- Halos. A misty veil of light surrounding a bright light source in dark conditions. Though the scene itself is not misted.
Any of these symptoms can increase when I get a hemiplegic migraine attack.
I can also spontaneously get the other symptoms of such an attack without the usually scintillating scotoma or headache. These usually last just a minute or two and are much milder. Most common are a short, mild burning sensation in one or other hand. This is usually associated with paresthesia (numbness or pins and needles) in a proper attack. Or I can get tingling in my top teeth. Sometimes I also get mild photophobia or hyperacusis: intolerance to light or sound. Finally I sometimes get short lived strobing or pulsating headaches. These usually last only a few seconds and can sometimes be severe.
Each person’s symptoms may vary. I have come across a support forum for people who have or think they have visual snow and are worried by it. Before writing a permanent page here, this is the link to that forum: http://thosewithvisualsnow.yuku.com/
Sources
http://216.25.100.131/upload/CT_Clas/diagnost.pdf
http://ihs-classification.org/en/02_klassifikation/02_teil1/01.05.03_migraine.html
http://www.migraine-aura.org/content/e25968/e26078/e26305/index_en.html
http://www.ncbi.nlm.nih.gov/pubmed/15606571
http://www.ncbi.nlm.nih.gov/pubmed/16688637
http://www.ncbi.nlm.nih.gov/pubmed/17388804
http://www.ncbi.nlm.nih.gov/pubmed/17883529
http://www.ncbi.nlm.nih.gov/pubmed/18727635
http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Search&Term=persistent%20aura%20without%20infarction&itool=QuerySuggestion
http://en.wikipedia.org/wiki/Depersonalisation
http://en.wikipedia.org/wiki/Blue_field_entoptic_phenomenon
http://en.wikipedia.org/wiki/Floater
http://en.wikipedia.org/wiki/Palinopsia
http://en.wikipedia.org/wiki/Visual_snow
http://thosewithvisualsnow.yuku.com
http://www.migraine-aura.org/content/e27891/e27265/e42285/e42288/e60771/index_en.html
http://www.visualsnow.com/
2008 October 31 at 10:06 am
Hi there,
I am the administrator for the Yuku site on visual snow (or persistent migraine aura, though not everyone accepts that diagnosis).
Some great information you’ve posted here – would love for you to pay a visit to the forum and maybe repost this information there? It’s very in-depth and might be useful to a number of people.
Thanks!
Ian Casey
2008 October 31 at 10:11 am
Hi, Ian
Wow! Thank you. I’d be happy too. I’m actually already a member already under another nickname.
2008 December 9 at 10:37 pm
Just wanted to say thanks for your detailed approach.
I’ve been attempting to ignore very similar symptoms for at least a decade and they finally did lead to anxiety, depression, etc. Although the tendency toward anxiety and panic reactions may be unrelated to migraines, so I’m sure I can call it a direct cause. Also – spending 12 hours per night (and most weekends) in bed would likely bring about depression even without the other symptoms.
I really do appreciate that you lay things out in a reasonable manner and that you clarify distinctions between opinion and fact. It has been my experience that most similar websites tend to fall into two categories – strictly clinical at moot bat crazy. (or to be less judgement – unfocused and irrational)
A website is not a diagnosis, but it was extremely helpful to be able to see everything intelligently and methodically detailed as it greatly improved my understanding (and comfort) with the symptoms. Your descriptions of symptoms were clear enough for me to immediately determine whether or not I share them.
Aside from state categorically that I do not suffer from the affliction of calling a “flashlight” a “torch” (I believe American television can help you with that, although such a treatment is not without associated risks) – I also wanted to genuinely thank you for choosing a theme that failed to induce nausea.
Seriously – much appreciated and good job.
2008 December 10 at 10:31 am
Thanks, Sam,
I started this blog with more of a general intention, but drifted into focussing on my own health issues. But from the start I wanted to write a factual-but-not-boring mini-site. I’ve found a lot of blogs are more about the writer’s ego, sadly, than helping or entertaining (or whatever) their readers. Though I must say of those WordPress do seem better blogs!! It’s great to hear that I’m doing what I set out to do. Thanks for your feedback.
You’re quite right that a website is not a diagnosis. This is why I’ve always tried to remind people to see their doctor if they think they have migraine, pma, or any other illness. This is a good opportunity to do that again.
As to the affliction of calling a “torch” a “flashlight”, the phrase “a people divided by a common language” comes to mind!!
Take care.
2009 April 23 at 4:09 am
Hi. I suffered from persistent migraine aura and intermittent severe migraine headaches for years in my mid-twenties. Then, I had an eight month long migraine, and found out I’m allergic to corn. By avoiding corn completely –including the corn starch that forms the base most meds (including migraine preventatives, what a cruel joke!)—I have been able to get rid of my persistent aura and substantially reduce the number of migraines I get each month. I truly recommend that anyone who suffers from persistent migraines get tested for food allergies (and some suggest food insensitivities too).
2009 April 27 at 5:53 pm
Hi, Liz,
Thank you for your comment.
First let me apologise for the delay in approving it; I’ve been having problems getting into the WordPress site this last few days.
Food allergies and intolerances do seem to be one factor in some migraine sufferers. I’d agree that it’s always worth testing this possibility (though again I point out I’m a lay sufferer, not medically trained). I’m glad you’ve found the likely cause of your own condition. The British Medical Association booklet does point out that it’s also possible, though, for a craving happen with the start of a migraine attack. So, we should be careful when assuming that eating a certain food before obvious symptoms appear that the food causes the migraine attack. It is possible that the attack is causing a craving.
All the best for the future.
2009 June 2 at 2:43 am
THANK YOU. I have been trying to explain what’s been going on to my Dr for the past year or so and he just doesn’t get it. My Dr says it will go away. I say no it doesn’t. It’s CONSTANT. He then say at least your better then before. Which is true.. I no longer lock myself in my room under the covers and in constant pain during the day time… and do school work at night. But you know It still bad. I can’t plan anything cause i don’t know when will knock me out. Do you have any suggestion on which type of specialist to go see or any studies i can print out and show them and say see see I’m not crazy look. Thanks again. Hey does any one have a horrible memory or maybe its just me. Or any suggestion about computer use?
2009 June 2 at 10:02 am
Hi, AM,
I can empathise to a degree with your problems. Though I had migraine attacks of a few hours’ duration every one or two days rather than constant pain. At the moment, things are better – though this is a relative term!
I’m not a medical expert or anything, just a fellow sufferer who wanted to show how bad migraine can get. And how hard it can be to be taken seriously. About your memory, can I suggest you also read my “Visualisation FAQs” page and see if it relates to you? You can find it here, from which you can find the links to the full series I wrote: http://porillion.wordpress.com/visualisation-faqs/
My guess is, and my nurse girlfriend would probably agree, you need to see a neurologist – if you’re not already. If you are, then you may need to ask to see another one. Can I suggest that you try the following online support forums, as people there may be able to offer more suggestions:-
http://health.groups.yahoo.com/group/migraine/
http://forums.healthcentral.com/discussion/migraine/forums?
http://www.migrainepage.com/cgi-bin/dcforum/dcboard.cgi
Take care.
2009 July 20 at 4:32 am
Wow, I have been struggling with the same exact symptoms as you for the past 10 years or so with little help from doctors. Reading your list is describing my day to day symptoms methodically. It all started at the age of 17 and I’m now 25. I have palinopsia, tinnitus, hearing sensitivity, fasciculations, and millions of lights when I look at high contrast images, ie: sky. I have had full optimological exams, brain mri, eeg w/ evoked potential, tons of blood work, and all returned normal, most done as recent as 3 months ago. Insurance refuses to pay for any other tests, and most doctors just tell me to stop stressing out. I feel like the symptoms have been getting worse lately and I really want to find a doctor with the knowledge of this particular condition. If you find someone willing to help you, please share it with me.
2009 July 20 at 11:40 am
Hi, Dominic,
Your story seems typical of others who’ve commented here, or on the “visual snow” support forum at: http://thosewithvisualsnow.yuku.com/
I feel I’ve been “luckier” in that my GP (family doctor) accepted my self-diagnosis based on the evidence I presented him (taken from my research for this blog!). My migraine specialist (who I saw because I also have frequent, severe migraine attacks), though accepting my self-diagnosis, admitted there’s no much medical science can do at present. I suspect as you’ve mentioned medical insurance you live state-side? I’m in the UK myself.
I will update this site as and when (if!) I find any more information. Meanwhile, you may find some more suggestions and advice at the visual snow support forum.
Take care.
2009 July 20 at 11:42 pm
I’ve been browsing the visual snow forum for a few years, and it has helped to a certain degree to share with people there. However I have not come across a site with information as intelligently written as yours, and you also share exactly the same symptoms as mine. Thanks for taking the time out to set it up! I will update you if I find any medications or tests that will help alleviate this mess.
I do live state side, in New York City. I thank the UK each morning as I sip away on some Scottish Breakfast Tea
2009 July 21 at 10:02 am
Hi, Dominick,
I’m pleased that you’re finding the site helpful, thank you. Thank you too if you do find any information to add. Finding quality information from reliable sources is hard. I avoid anecdotal information, as it’s not always reliable. But others do share their personal experiences in support forums.
Being a country lad myself, I think I’d find New York City quite scary! (London’s scary enough!) I’m glad you enjoy the tea! It sounds better than the brew I drink!!!
Take care
2009 August 10 at 4:50 pm
Hi! Thanks so much for this site which is about 1000 times more helpful than the doctors have been! I had an unusual cluster of 7 migraines over the course of a week, where the penultimate left me with a weird surreal feeling and ‘ghosting’ and ’shadowing’ effects on anything I looked at. It felt like my brain hadn’t reset properly, and my eyes were taking in too much information. I couldn’t read, couldn’t drive. I could watch TV as when things were moving, it felt like my brain didn’t have time to get confused, and also the colours were saturated.
I realise everyone is different, but here’s something for other sufferers to try. I realised that I felt better when I was under trees and also when I was in the downstairs toilet – this has no natural light, just halogen spotlights.
I thought that maybe green or cooler light helped and maybe I could trick my brain. So I made an eye mask out of see-through green plastic from a stationery folder and wore it for about 7 hours. The next morning, the shadowing had gone! My vision still isn’t 100% – blue sky is no longer blue, but has grey moving filters – but it’s so much better.
Good luck everyone and remember, you’re not the only ones!
I realised
2009 August 11 at 5:22 pm
Hi, Helen,
Thank you for sharing your experience. It rings a bell that I have read somewhere in the past that tinted glasses can help with certain visual and/or migraine problems. If I find any reliable information on that I’ll add it to the site.
Take care.
2009 October 11 at 8:10 pm
Is there any chance you have been following the research of Dr.Zamboni in Italy? In a nutshell he claims to have found a link between autoimmune disease and vascular insufficiency in the brain. Perhaps theres a chance your migraine related vascular changes are preventing waste materials from leaving your brain and causing all these strange symptoms, which are very similar to MS. Have you had a cranial doppler performed by your GP? Contact me if you’d like to go into further detail.
2009 October 12 at 9:57 am
Hi, Dom.z,
No, I’ve not heard of the research by Dr. Zamboni. Thank you for raising this. However, from a brief investigation I should point out that VS and PMA are relatively common complication of a history of migraine (or previous hallucinogenic drug use). As a complication of MS it is much rarer, and I don’t want my readers to automatically assume the worst! Myself, I have been tested for MS and received the all clear. Nonetheless, for those readers who may in future have a diagnosis of MS caused symptoms, this work may be of interest.
Take care.
2009 October 13 at 3:06 am
I apologize, it was not my intention to scare anyone into thinking that they have MS, it is still a very rare disease and migraine is much more common. However, the only reason I brought it back up is that you and I share the same symptoms, and my neuro seems to think that there is some sort of autoimmune eitology because of the fasciculations (note: pure speculation as MS testing has come up negative as well).
Is there a possibility that there is some sort of (minor) autoimmune aspect of what is going on with us? This of course is 100% pure speculation and guessing, but guessing has pretty much been the name of the game in the attempts to diagnose me. I will see if I can get a MRV of my brain done, will fill you in on the results.
2009 October 13 at 9:40 am
Hi, Dom.z,
No worries. It’s an interesting idea that a mild autoimmune aspect may play a part, though until your comment I’d heard of no research investigating that possibility. I can’t comment further, as I’m not medically qualified, except to say that nothing I’ve read of mainstream information suggests it. *If* there should be such a link, then I guess it would turn up in a reseach lab!
Take care.