h1

Persistent Migraine Aura & Visual Snow (Part Three) (Last Edited: 2009 Nov 19)

2008 October 11

Go back to Part 2

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.


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/

Go back to Part 2


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/

About these ads

28 comments

  1. 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


  2. Hi, Ian

    Wow! Thank you. I’d be happy too. I’m actually already a member already under another nickname.


  3. 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.


    • 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.


  4. 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).


    • 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.


  5. 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?


    • 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.


  6. 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.


    • 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.


      • 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 :)


        • 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


  7. 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


    • 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.


      • Kept meaning to reply to this as there have been developments. After many appointments with opthomalogists and neurologists, I was diagnosed with Irlen Syndrome. You know when you see children with dyslexia wearing different coloured glasses to help them read? Well my reading speed was improved 20% by having green lenses. It also helped with the visual “shadowing”.


        • Hi, Helen,

          That’s interesting, thank you. I’m glad you have some progress.

          Take care.


  8. 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.


    • 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.


      • 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.


        • 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.


  9. have you read something of Stan Grof ?

    maybe it´s not an answer, but a help …


    • Hi,

      Thank you for your suggestion.

      I must admit I had not heard of Stan Grof or his techniques of “holotropic breathing” before. I’ve only done a quick read of the Wikipedia entry, but I do note one thing that worries me. According to the Wikipedia entry on migraine, “The incidence of migraine is related to the incidence of epilepsy in families, with migraine
      twice as prevalent in family members of epilepsy sufferers, and more common in epilepsy sufferers themselves.” The entry on holotropic breathing does point to research “concerns that the hyperventilation technique might cause seizure”.

      Many readers here also suffer something called “visual snow” or persistent aura. The understanding of this in relation to migraine is poorly understood. But it is known that it can also be triggered by hallucinogenics. While holotropic breathing does not use LSD, the article does say Stan Grof used this in early research. Anyone thinking of using LSD should be aware of this risk and others with its use (and that it is illegal in most places).

      Readers may want to explore this for themselves. It appears, in my brief read, to be an “alternative therapy”. Anyone using such a technique should consult their doctor first. If using it for a medical condition, they should not use any alternative therapy in place of conventional medicine.

      Take care.


  10. please help i have had an aura in my eye since friday and has not went away


    • Hi,

      Have you been to see your doctor? It’s hard to say from your writing what you have, and I must stress I am not medically qualified. I think you might want to see your doctor as soon as possible, to rule out any eye complaints – if only to be on the safe side.

      Take care.


  11. YOU DONT UNDERSTAND HOW MUCH YOU HAVE HELPED ME, I HAVE SUFFFERED WITH DEPRESSION AND ON GOING INCREASES TO MY BI POLOR PROBLEMS DUE TO EVERYTHING YOU HAVE DESCRIBED, I ALSO SINCE A CHILD SAW ALL OF THIS BUT JUST NO WHERE NEAR AS MUCH AS I DO AND HAVE FOR ABOUT 4 YEARS, CONSTANT EVERY DAY FOR 4 YEARS I HAVE SUFFERED THIS CRAP BADLY ITS LIKE IVE TAKING MAGIC MUSHROOMS EVERY SINGLE MOMENT OF EVERY SINGLE DAY AND I HAVE TRIED FINDING ANSWERS FOR SO LONG OR JUST TO FIND SOMEONE WHO SHARES IT AND UNDERSTANDS AND CAN HELP LAY TO REST WHAT I AM GOING THROUGH BY HELPING ME SOLVE THE MYSTERY,I THOUGHT IT WAS SPIRITUAL,I USED TO SEE ALOT OF SPIRITUAL THINGS/SPIRITS I HAVE SEEN UNIMAGIONABLE AMAZING THINGS IN MY LIFE BUT I SEEN NUMEROUS MEDIUMS AND I HAVE HAD HELP TO TUNE OUT OF THE SPIRIT WORLDS AND SEE IF THAT HELPED, I DONT SEE ANYTHING SPIRITUAL AS MUCH THESE DAYS BUT ALL THIS CRAP IS STILL HERE,I GET MIGRAINS NOW N THEN WHICH INTENSIFY THEM SO MUCH I HAVE REGULAR PANIC ATTACKS AND FEEL I CANT GO ON, IVE DONE SO WELL BUT ITS GETTING TO MUCH I EVEN HAVE TRIED A WIDE VARIETY OF TABLETS THEY ONLY HAVE ONE MRE PRESCRIPTION TO TRY FOR ME AND IF THAT DOESNT WORK….THATS IT NOTHING CAN BE DONE AND IT SCARES THE HELL OUT OF ME :( IM 26 NEXT MONTH I HAVE A 1 YEAR OLD DAUGHTER AND SOMEDAYS I FEEL I AM LOSING MY MIND MORE N MORE BECAUSE NOTHING IS HELPING I JUST WANT A NORMAL LIFE.SEEING THIS HAS HELPED IN SO MANY WAYS I CANT THANKYOU ENOUGH, NOW I JUST NEED TO HOPE AND PRAY TO GOD THIS FINAL ATTEMPT TO HELP ME WILL WORK , WISH ME LUCK I WILL UPDATE AND GIVE U THE NAME OF THE MEDICATION INCASE YOU EVER NEED IT XXX


    • Hi, Lisa-Marie,

      I am glad that you have found some help from this site. I understand how frustrating and worrying visual snow and migraine is. I myself cannot work because of them. I have found writing this site helpful, and it makes me happier that others find it helpful too.

      I share your concerns at the lack of apparent knowledge or help from the medical profession. One of my hopes is that site like mine, and the support group I’ll suggest you try in a moment, will raise awareness of visual snow and how it affects sufferers. As you may have read, I’m moving to a hosted site where I hope we will come together as a community to also create our own support and campaign forum. You can keep up-to-date on how this goes from the homepage of this site (http://www.porillion.wordpress.com)

      In the meantime, you may want to look on the support group for visual snow that I first came across: http://thosewithvisualsnow.yuku.com/

      And I have listed a few others on the FAQ page: http://porillion.wordpress.com/pma-visual-snow-faqs/

      I do wish you all the best, as I do all of us, for the future in the hope that we may one day be relieved of visual snow and, for those of us who also suffer them alongside, migraines too. If you do find a medication that helps, I’m sure we would all like to know and share in your happiness.

      Take care.


    • Hello Lisa-Marie, i was wondering which line of treatment did you follow? Is it the regular Anti-epileptic treatment or did you take another medication? & has it helped so far? Thanks!


      • Hi,

        Yes, it is – I’m on Epilim, which helps a small bit. The visual snow seems less severe, and it also halves the number of attacks of migraine I have that are painful. But it hasn’t lowered the number of migraines I get with confusion, hating light, and so on.

        Take care.



Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

%d bloggers like this: