PORILLION

(Please note that there are discussion threads on this topic. Most of the comments are on “Part One” of the series. But there are shorter threads on the other Parts, and at the end of this page. Please see the links below.)

This is a quick guide to persistent migraine aura (PMA) and visual snow (VS). It may be helpful for sufferers and their friends, family and work colleagues. On this page you will find links to:

• Information about what each condition is,
• Information about how to help or get help,
• Online support groups for sufferers,
• Other help websites that may be of interest.

What are PMA and VS?

First of all, they are not always related conditions. Usually someone with VS has it as a symptom of either:

• Persistent migraine aura (PMA), or
• Hallucinogen persisting perception disorder (HPPD), or
• Less commonly optic neuritis caused by multiple sclerosis (MS).

Secondly, someone with any one of these conditions may not necessarily also have VS. But I write about both in one page because:

• These conditions are commonly linked, and
• I have both PMA and VS.

Persistent migraine aura is more rightly called persistent aura without infarction, or just persistent aura. It is a complication of migraine where the auras continue without or after head pain. These auras can last longer than normal, or can be permanent. How PMA works is not known. As well as visual snow a number of other visual and non-visual symptoms can be associated with PMA. Not much is known about how to treat PMA. Medical practitioners also disagree on how common PMA is.

Visual snow is the appearance of “seeing the air”, and is known as aeropsia. It is like the static on an analogue TV picture in an area of poor reception. It is usually more noticeable in dim or dark conditions. It is often confused with something called Scheerer’s Phenomenon, which is not related. It can be hard to get a firm diagnosis of visual snow. And it can be hard to get a diagnosis on what the underlying cause is. Not much is known about how to treat VS. Many medical practitioners have not heard of VS, especially in primary care. Many people with VS can get anxious or depressed about it. There is also a statistical link with depersonalisation-derealisation.

PMA and VS are covered more fully in these Saturday Series posts:

• Persistent Migraine Aura & Visual Snow (Part One)
• Persistent Migraine Aura & Visual Snow (Part Two)
• Persistent Migraine Aura & Visual Snow (Part Three)

There are links to more information at the bottom of parts one and two.

Help with PMA or VS

If you have symptoms of PMA and/or VS and are worried about them you should start by seeing your family doctor. Without a diagnosis either condition can be scary for both sufferers and those around them. Sadly, you may have to expect some time before you get a diagnosis. It is unlikely that if you have VS it is caused by multiple sclerosis (MS). But whatever the cause, your doctor’s diagnosis may give you peace of mind.

If you are a friend, family relation or a work colleague you can help a sufferer. The most important things you can do are:

• Understand what PMA or VS is,
• Understand that the sufferer usually can’t control it.

You may be tempted to blame a sufferer who has HPPD. But remember that VS can start a long time after he or she has stopped using hallucinogenic drugs. And even a single one-off experiment with this kind of drug can cause VS. Most of all remember that someone with VS may never have taken any drug at all.

If you are an employer you can educate yourself on what PMA or VS is. For the most part neither PMA nor VS need affect an employee’s work performance. But understanding how VS can cause anxiety for someone with it is important. You need to be aware that VS can sometimes trigger panic attacks or episodes of depersonalisation-derealisation. At these times, the employee may need to withdraw from the work environment for a short time to recover. Someone with PMA may also suffer migraines, in which case please read the Migraine FAQs page. Someone with MS will also have health needs.

By offering flexible working you can help yourself, your company and your employee. VS and PMA (and migraines) themselves in most cases do not need cut productivity or attendance. Asking an employee to work through a panic attack or episode of depersonalisation-derealisation (or migraine) is cruel and could expose you to legal action. And it isn’t necessary.

Online Support Groups

If you, a friend, family member or colleague suffers from PMA or VS you can find online help from these forums. Please note that they may be aimed more for sufferers with especially severe forms. Always read any introductory information the forum moderator provides:

PMA and migraine,

• http://health.groups.yahoo.com/group/migraine/
• http://forums.healthcentral.com/discussion/migraine/forums?
• http://www.migrainepage.com/cgi-bin/dcforum/dcboard.cgi

VS (including PMA, HPPD and MS caused VS),

• http://thosewithvisualsnow.yuku.com/

If you know of other online forums, please contact me at nospamporillion@hotmail.co.uk Remove ‘nospam’ first!

Other Websites

These websites may be helpful to UK readers if you cannot work due to the mental health side-effects:

• Run by a barrister and a writer, this site uses facts gathered under the Freedom of Information Act in the UK. It charges a small yearly fee: http://www.benefitsandwork.co.uk/
• The website of Martin Lewis of Channel Five’s It Pays to Watch fame. The site has many money saving tips and loads of forums. Registration and use is free: http://www.moneysavingexpert.com/